Low T3 syndrome V: Should it be Treated with Thyroid Hormone?

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This article is part of a special report on Thyroid Disorders. To see the other articles in this series, click here.

In this final article in the series on Low T3 Syndrome, we’ll discuss whether thyroid hormone replacement therapy is an appropriate treatment in these cases.

Unfortunately, there are few studies that have examined this question specifically, and even fewer that have explored the question of whether T4 or T3 (and which type of each) would be the best choice.

As a clinician, my primary concern is always primum non nocere, or “first, do no harm.” From this perspective it’s important to recognize that the changes seen in Low T3 Syndrome may represent a restorative physiological adaptation by the body to chronic illness. In other words, T3 levels are low because the body is attempting to conserve energy and resources to better cope with the challenges it is facing. Increasing thyroid hormone levels in this situation could conceivably have adverse effects.

For example, the changes observed in the thyroid axis in acute illness are similar to those observed in fasting, which can be interpreted as an attempt to reduce energy expenditure and protein wasting. (1) Giving fasting subjects thyroid hormone results in increased catabolism (breakdown). (2)

In cases of chronic illness, however, it is less clear what effect thyroid hormone replacement has. The few studies that have been done produced mixed results. (3)

Some studies show that treatment causes harm, others show no change, and still others show an improvement. After reviewing the literature on this, I’ve come to the following tentative conclusions:

  • T4 is rarely, if ever, effective in Low T3 Syndrome and may even cause harm. This is probably due to the decreased conversion of T4 to T3 that is seen in chronic illness.
  • T3 replacement has been shown to be consistently beneficial only in cardiac patients who’ve recently had surgery, heart failure or a transplant.

That said, I’ve heard anecdotal reports of improvement from people who have taken replacement T3 hormone for a condition called “Wilson’s Syndrome” (which does not exist in the scientific literature or according to any mainstream medical organizations). Wilson’s Syndrome refers to low basal body temperature and other nonspecific symptoms occurring in the presence of normal thyroid hormones.

I’ll be the first to admit that “lack of evidence is not evidence against”, and as I mentioned earlier, there’s not a lot of research on the effectiveness of T4 and T3 replacement therapy in Low T3 Syndrome. It may be that as we look into this further, we’ll discover a role for thyroid hormone replacement in these conditions.

That said, I think caution is warranted. Taking T3 when you don’t need it is potentially dangerous. It can significantly upregulate the metabolic rate and lead to cardiovascular complications in some patients. And, if the changes seen in Low T3 Syndrome are a compensatory adaptation of the body in response to chronic illness, increasing T3 levels artificially may have undesirable effects.

In the majority of cases of Low T3 Syndrome, I think it’s preferable to identify the underlying cause and treat that. As I discussed in articles #3 and #4 in this series, those causes most often include infections, autoimmunity and inflammation.

Have any of you tried thyroid replacement for Low T3 Syndrome? If so, what was your experience? Please let us know in the comments section.

Articles in this series:

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Comments Join the Conversation

  1. Ana says

    I’m so glad to find your studies I’m a good sample of everything you have said I had feel like I do have hypothyroidisms for all the symptoms until I decide to request levothyroxine for treatment and it actually works at the beginning but the side effects I had did not worth the treatment now I’m under treatment prophylactic for TB because I had the TB test positive and never treated before I will let you know if my T3 rise when I finish the treatment to confirm your theory of long chronic disease wasting

  2. David K says

    I got partial results of the blood work I got last week. My free T4 is HIGH while my free T3 is normal. Also, my rT3 is HIGH. Lastly, my white blood cell count is low and neutrophils measurement is low, implying low count wbc. I am not sure what’s going on. Can somebody please give me some advice.?

    • Faith says

      Hi David,

      First of all, it is normal to make some RT3…in other words, to convert excess T4 into unusable RT3.

      In situations where one has normal T4 and low T3 and high RT3, then illness is usually behind this.

      However, in situations of high T4 and high Rt3, then one could easily theorize that the excess RT3 is explained by the body trying to get rid of excess T4. If you have no underlying condition, then this may be a likely explanation.

      Hope that helps

      • David K says

        Thanks for the response Faith. I got most of the recommended blood work that I’ve researched, which includes zinc RBC, magnesium RBC, free T3, free T4, rT3, vitamin D 25, ferritin, iron level, selenium, vit B12, and a few others. I did not get vit D 1.25 test, but ask for one. I do not have any base reference for hormone levels.

        The red flags I have are low vit D level (low 20’s ng/mL), low WBC count (3 x 10^3/uL), a little high MCV (98 fL, some consider this as within the range), low absolute neutrophils (0.9 x 10^3/uL), high free T4 (1.91 ng/dL), and high rT3 (30.8 ng/dL). Test for Antithyroglobulin Ab and TPO were normal.

        Also, TSH was normal, but on the lower end (1.86 uIU/mL) and T3 was normal (3.0 pg/mL).

        Zinc and selenium levels were normal on the higher end while magnesium level was normal on the lower end. This is because I’ve been supplementing with zinc piccolinate and carnosine for past few months along with selenium and Brazilian nuts.

        One last thing to keep in mind is that I had two surgeries last year that were 9 months apart and had a lot of antibiotics afterward, which killed my gut health. I have a leaky gut syndrome for sure because I started getting rashes on my body everywhere along with itchiness. I’ve had 4 surgeries with general anesthesia/antibiotics in total, which is enough to kill healthy bacteria in the gut.

        I am kind of confused by the blood work results. I know that I have leaky gut -> compromised immune system -> onset of other medical conditions. Is there anything I can do to boost my immune system so that my body starts functioning properly? If anybody has good advice, please feel free to share. I am desperate and my hair is still shedding a lot :[

        • Gillian says

          Hi David,
          Besides fixing your low vitamin D, I wonder if looking at your copper might be a possibility?
          High red blood cell MCV (aka high mean cellular volume, aka macrocytosis) usually makes one think of low B12 and/or low folate, but you had your B12 tested, so I’m assuming that was normal. (You don’t mention folate.)
          Because you’re taking zinc and you mention gut issues, I thought about low copper as a possible culprit.
          Both zinc supplementation and malabsorption, among other things, can cause low absorption of copper, and low copper can cause low levels of white blood cells (aka leukopenia) with low neutrophils (aka neutropenia). I’ve pasted in a few links below with more information, in case any of this is useful in talking with your doctor(s).
          (Apparently low copper is also associated with osteoporosis, greying of hair, and nerve problems that can cause symptoms like trouble with balance.)
          Hope some of this might be helpful in your search for answers –
          Gillian

          http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/herbsvitaminsandminerals/copper (excerpt)
          Some people may not get enough copper from foods, especially if they take zinc supplements, which can partly block copper absorption. Large doses of vitamin C supplements can also block copper uptake. People who take zinc supplements or large doses of vitamin C may need to take extra copper to absorb enough. Those with malabsorption diseases or malnutrition may also need extra copper.

          http://lpi.oregonstate.edu/infocenter/minerals/zinc/#safety (excerpt)
          The major consequence of long-term consumption of excessive zinc is copper deficiency. Total zinc intakes of 60 mg/day (50 mg supplemental and 10 mg dietary zinc) have been found to result in signs of copper deficiency. Copper deficiency has also been reported following chronic use of excessive amounts of zinc-containing denture creams (>2 tubes per week containing 17-34 mg/g of zinc; (100)). In order to prevent copper deficiency, the U.S. Food and Nutrition Board set the tolerable upper intake level (UL) for adults at 40 mg/day, including dietary and supplemental zinc (5).

          https://en.wikipedia.org/wiki/Copper_deficiency (excerpts)
          The deficiency in copper can cause many hematological manifestations, such as myelodysplasia, anemia, leukopenia (low white blood cell count) and neutropenia (low count of neutrophils) . . . .
          . . . . The characteristic hematological (blood) effects of copper deficiency are anemia (which may be microcytic, normocytic or macrocytic) and neutropenia.[6]
          . . . . Anemia and neutropenia typically resolve within six weeks of copper replacement.[8]

          http://www.jabfm.org/content/19/2/191.full (Note: high methylmalonic acid makes one think of low B12 and high homocysteine makes one think of low B12 and/or low folic acid, but this woman wasn’t low on either – she was low on copper.)
          Wu J et al. Copper Deficiency as Cause of Unexplained Hematologic and Neurologic Deficits in Patient with Prior Gastrointestinal Surgery J Am Board Fam Med 2006:191-194
          Abstract
          Copper is a trace mineral essential to hematopoiesis and to the structure and function of the nervous system. Copper deficiency is a rare cause of anemia, leukopenia, and myeloneuropathy, but should be considered in the differential diagnosis in a patient with prior gastrointestinal surgery. We report the case of a 51-year-old woman admitted for nonspecific neurologic symptoms ultimately found to be due to copper malabsorption.
          (excerpt)
          The patient’s neurological and laboratory findings were initially attributed to vitamin B12 or folate deficiency . . . . However, her vitamin B12 and folate levels were available by the third day of hospitalization, with a vitamin B12 level of 738 pg/mL (normal range, 200 to 950 pg/mL) and folate level greater than 24 ng/mL (normal level, >0.9 ng/mL). Methylmalonic acid was 0.77 μmol/L (normal level, <0.4 μmol/L) and homocysteine was 4.7 μmol/L (normal range, 4 to 12 μmol/L). . . . . Serum iron, ferritin, and transferrin levels were normal, at 122 μg/dL (normal range, 40 to 150 μg/dL), 259 ng/mL (normal range, 10 to 291 ng/mL), and 220 mg/dL (normal range, 200 to 400 mg/dL), respectively. Other laboratory findings included a white blood cell count of 2,000/mm3 (normal range, 4400 to 11,000/mm3), with 40% neutrophils. . . . .

          http://171.67.112.51/content/123/1/125.full.pdf (Note: these three men all had very high zinc levels)
          Willis MS et al. Zinc-induced copper deficiency: a report of three cases initially recognized on bone marrow examination. Am J Clin Pathol. 2005:125-31.
          Abstract
          Copper deficiency is a rare cause of sideroblastic anemia and neutropenia that often is not suspected clinically. . . . . Excess zinc ingestion is among the causes of copper deficiency. We present 3 cases of zinc-induced copper deficiency . . . . The first patient was a 47-year-old man with a debilitating peripheral neuropathy that had progressed during the previous 18 months, mild anemia, and severe neutropenia. The second was a 21-year-old man receiving zinc supplementation for acrodermatitis enteropathica in whom moderate normocytic anemia and neutropenia developed. The third patient was a 42-year-old man with anemia, severe neutropenia, and a peripheral neuropathy that had progressed during 8 months. The bone marrow findings in all cases suggested copper deficiency, which was confirmed by further laboratory testing and determined to be due to zinc excess. . . . .

          • David K says

            Gillian,

            Thanks for your insight. My result for vitamin B12 was normal, actually on the higher end. I was tested for folate too, but the result has not been released yet. I was supplementing with B12 in the past for about 6 months, so I think that explains why my B12 level is normal.

            I suspected copper might be a problem as well. I’ve taken zinc supplements for a long time without taking copper supplements. Copper from food source is not easy to get as they are abundant in shelled seafood. My hair loss symptoms actually worsened when I switched from zinc piccolinate to zinc carnosine. I’ve dropped zinc supplements altogether and have been taking copper supplements for 6 days now.

            I have not had a chance to read the articles you posted, but I really find your idea convincing because it suits my case perfectly. I will talk to my physician about it.

        • Faith says

          Hi David,

          The normal T3 (the only one that truly matters), high T4 and high RT3…especially in light of the normal to low TSH (the pituitary’s request for thyroid) all suggest that the RT3 is a result of the body trying to rid itself of the excess T4.

          While one would like to think that the TSH should be lower with excess T4 (as it was originally believed to respond to T4 only), it is normal as is your T3 (the one you use).

          The clear antibody tests mean that they will not be dx’ing hashi’s.

          All that suggests that the thyroid is not your issue.

          Regarding everything else, you cannot (truly) tell if your Vit D (also an endo hormone) is low without the 1,25 D test…as what is tested on the 25,D test is the inactive hormone (similar to testing T4 only). MANY people have low 25,D who have normal, even ideal, 1,25 D. Unfortunately, no one seems to want to understand the Vit D process enough to end the fad or realize that the endless studies are thus invalid…I suspect that the fad will remain another 10 years. Sorry that you could not get your test.

          You will have to decide what you do re the low inactive D.

          White blood cells are measured in percents…so some will appear high and some low to non-existent…that is all perfectly normal. Each kind of white blood cell has its own function. Neutrophils destroy bacteria and fungus…so, unless they are suspecting AIDs, you were not having an issue with bacteria, fungus, parasites when your labs were drawn.

          The one of interest is the MCV…or Mean Corpusul Volume…it just means that your cells are larger than normal. If this is coupled with low blood cell count (you did not mention) and low hemoglobin (also did not mention), then it could be a form of anemia. Since it is likely that those two other labs were normal, it is unlikely this is the case. They can also be big when you are making fresher new blood…as may be the case after surgeries. Also, likely not the case, they can be big if you drink alcohol fairly often.

          The vits (zinc/selenium/etc) have nothing to do with thyroid use and function (although, the bulk of people on here will disagree). What I do know is that the need for selenium is very low (in the body, in general) and that the symptoms of too much are the exact same as for too little. Unlike vitamins (that one can take and take and simply excrete), minerals are needed in precious balance in minute amounts…and too much or too little can quickly put our health (and life) in jeapordy.

          I know gut health is a huge topic these days…but (trying to add some logic and reason here) if you had a truly leaky gut (first off, one would get sepsis), then you would be having an immune response…which you are not. My doc had a great suggestion for testing your probiotic (most on the market don’t work), by putting it in a half cup of milk and seeing if it curdles overnight. The major problem you would experience from antibiotic use is the inability to digest food…and the inability to fight yeast. Trusting that you do not have thrush or a yeast infection…and that you are still digesting food, likely the antibiotics you took are not an issue.

          I was on 2-4 antibiotics solid of 1.5 years. Not only for myself, but for a surprising number of people I know, digesting food has become an issue. Like corn had been for most people, more foods are becoming. However, you did not mention that was your issue.

          Lastly, the thyroid numbers fluctuate over time…and change slightly when you have a cold…all this is normal. And just because the lab has a so-called “normal” range, does not make it your normal. The best suggestion I can make is to look up the body function behind each thing being tested…rather than the “theories” out there…for example, what cells use zinc…and in what way? What is the step by step body process of thyroid hormone, or Vit D??? What makes what, when and how?

          I wish I had better answers…the labs look good. They probably told you to take Vit D…and it probably wouldn’t hurt as you are not having a bacteria issue, but may not be needed.

          The hair thing…that is other hormones. I wish I could remember which ones, I deeply feel for you.

          Hope that helps.

          • David K says

            Faith,

            Thanks for a thorough response. My red blood cell counts are normal and same for hemoglobin level. MCV was a little high, but my vitamin B12 level was fine, so I do not think MCV matters. My liver enzymes are all normal and kidney is normal as well.

            The reason why I think I have poor gut health is because of many reasons. First, as I stated above, I’ve had 4 surgeries with general anesthesia, followed up by megadoses of antibiotics afterward. I had two surgeries as a kid when I was 7 yrs and 9 yrs old respectively, and I do not recall eating yogurt or probiotic rich food afterward. In addition, I was prescribed with Accutane twice in my life (20-30mg/day for 300 days, total 6000-9000mg) and also had doxycycline for acne. All these are possible causes of compromised gut.

            Furthermore, I used to drink non-organic pasteurized milk all the time, probably 1 gallon every week. I also ate a lot of canned tuna in the past, at least 3-4 cans/week. My all time favorite meal was sausage, the cheap ones you can find at Walmart. I have stopped eating all of them, but I think the damage is already done.

            After receiving the last surgery in March 2014, my body has been functioning strangely. I’ve been suffering from eczema, pityriasis rosea, seborrheic dermatitis, and dandruffs. I have never had pityriasis rosea in the past and my body always felt itchy.

            Food intolerance has become prominent. Whenever I consume dairy or fruits with high fructose, my shedding becomes more severe. I cannot even have a sip of alcohol as it turns my entire body red, hot, and itchy. Processed foods are hard to eat as well. Common salad dressing and a lot of raw veggies lead to same reaction, increased shedding.

            Adrenal fatigue is another thing. I do not feel as refreshed even after sleeping for 9-10 hours of sleep. I have difficult times concentrating and thinking.

            I know that a lot of hair loss sufferers focus on hormone DHT. I’ve tried finasteride and other alternative supplements that lower DHT, but they all increase shedding and create more rashes on my body. I do not think DHT is the sole culprit of hair loss in my case. There is a bigger piece of puzzle that I need to figure out, but I still have not found the true answer yet.

            So far, my conclusion is leaky gut (poor gut health) -> autoimmune response resulting in food intolerance -> compromised immune system (low WBC, neutrophil counts) -> infection (pityriasis rosea, eczema, SD) -> hair loss. Does this seem plausible? My physician just thinks this is telogen effluvium, but it’s been 9 months already and I shouldn’t have gotten other skin conditions in that case.

  3. David K says

    I got partial results back from blood work I got last week. My free T4 level is HIGH, but T3 level is low. Also, rT3 level is high. I am not even sure what condition I have. Has anybody seen a condition like this? What should I do about this condition? I would appreciate your feedback.

  4. Lori says

    I tried 1/4th a tab of 5mg of generic Cytomel for low T3 for 3 days in a row. I could not tolerate it, I felt horrible. My HR was elevated (120), dull headache, nausea, couldn’t eat, incredibly sleepy; I couldn’t function. My current symptoms of fatigue and anxiety seemed like heaven compared to how the Cytomel made me feel.

    • Fern says

      Lori,

      When I started on cytomel I didn’t have much anxiety, but the first dose, 1/2 of 5 mg tablet was great for me for the first day, but I knew it was way too much, so I didn’t take another one for a couple of days and then decreased to 1/4 tablet but not two days in a row. Eventually I figured out how to split it down to 1/8th and that worked for me for a while. As my body adjusted I could take more without my HR rising above 80 or my BP being high. That was the sign to me that my level was right, and I began to function better on a regular basis.

      About a year ago, I had a low TSH test, although neither my Free T4 or T3 were high.

      I was forced to go off the Cytomel then, and had terrible fatigue, drowsiness, and sensitivity to the cold until I was told I may be depressed and I was put on Wellbutrin, which seemed to help a great deal, even with the cold intolerance.

      I also started taking Acetyl-L-Carnetine which seems to have helped somewhat with muscle weakness, especially fine muscles like the eyes (relaxing my severe double vision) and for bladder control.

      • Lori says

        Fern,
        I switched to 1/2 tab of lowest dose of Synthroid to see if it can boost my T3. I am not really tolerating it either. It is giving me insomnia and nervousness; only 5 days into it. I took Wellbutrin 4 years ago for weight loss and I felt really good on it. I have read that it’s not always necessary to try to correct low T3 but address the underlying problem, I am also peri-menopausal. I have considered trying Wellbutrin again to see if it can help with my mood and fatigue. How are you doing on it?

        • Fern says

          If I understand correctly, 5 mg is the lowest dose of Cytomel and it was way too much for me until I chopped the pill into 8 pieces… but even the Synthroid lowest dose, 25 mcg, I believe… if you get a bad reaction to that, then you are probably converting the thyroxine to triiodothyronine well enough. I suspect it doesn’t happen very well with me.

          Even though my endocrinologist told me that my labs may indicate that I could be having a “non-thyroidal illness” [or Low T3] and it may have caused my TSH level to drop without the FT4 rising, he has also said that no condition that I know I have could have caused it. It might be caused by severe depression or severe psychosis, or at least something more severe than chronic sinusitis.

          I don’t think my depression is that severe, especially when on the Wellbutrin. Yes, it is working well for me but the doctor had to increase the dose so I am taking 450 mg for half the day and 300 for the other half. [I take the 300 extended release (24-hour) tablet once a day and the 12 hour, 150 mg tablet for the other half day being careful not to overlap the times so much that I ever have more than 450 mg in my system at a time.]

          I was having a terrible time with depression even on Wellbutrin when I started using estrogen and especially when my OB/gyn had me use it 3 times in a week instead of just once. That was when my regular doctor tried me on 300 mg Wellbutrin plus some Zoloft. I didn’t do well on that combination so he had me do the 300-450 mg Wellbutrin that I am doing now. I also stopped the estrogen because it was obvious to me that it had the worst effect on me.

          Anyway, I understand the necessity of finding the illness that is responsible for the Low T3 Syndrome, but the doctors seem to believe I am just perfectly healthy other than having auto-antibodies that could cause either Hashimoto’s Thyroiditis or Graves’ Disease. So they say it’s depression but the low energy and inability to function well, remain with me.

  5. vickey says

    I’m 62. Diagnosed with hypothyroidism at 28 at the onset of myxedema coma. Prescribed 200 mg Synthroid. Over the years I tried natural thyroid medications, but they made my heart race while not helping symptoms very much. Darn. I wanted to be on something “natural.” Oh well. Eventually went back on Synthroid 110 mg as I aged – but suffered symptoms all my adult life. Had a Thermography Test done 10 years ago – it did report a “severe viral infection” that I can’t seem to shake off entirely. I’m ok if I keep on high doses of Vitamin C, etc. and don’t overwork my body. But if I let myself get run down or stressed too much emotionally, the upper respiratory suffers and I cough up a little stuff. I don’t know who to go to find out what kind of virus is causing this, and how to destroy it so I do the best I can. I betcha the thyroid problems are connected to that virus, but can’t prove it right now. So then – a few years ago, symptoms worsened, so I experimented and increased the T4 Synthroid which caused diarrhea, but did make me feel a bit better. I knew something was wrong so went to MD and asked that my thyroid be checked. He told me nothing was wrong with my thyroid and tried to push Zoloft into me! I changed MD’s immediately. Found an out of town alternative MD who did all the tests, including Reverse T3 – and that was way out of range at 425. I had done my homework and showed him research on T3 Cytomel. He prescribed a low dose, breaking up the tabs which I took sublingually. I monitored my pulse 3X day. I did start to feel better. I increased the dose gradually and still take Cytomel 2-3X a day. It helps me more than any other medications I’ve used. I’m not symptom free but function better. I do half a dozen cleanses a year followed by colonics to keep toxins down, which also by the way, stopped the 8 years of horrible migraine suffering after just 1 liver cleanse and 2 colonics! What a relief! I grow veggies, flower, don’t smoke, drink clean well water, breathe fresh air except on “spray-days” and actually feel and look better today than I did 10 years ago. Its a lot of work to take care of self but its better than being sick!

  6. CherieE says

    Recently diagnosis with low T-3 in the absence of any obvious illness. I am 61 and take no medications other than Topamax for migraine control and vacated. Just a couple of bad disc in my back. I am at loss for this. I do have trouble keeping my iron level up. Not sure what if anything to do about this.

  7. ivy says

    Hello hipifiggy,
    Insomnia is either caused by hyperthyroidism, or hypo…

    It means you dont take right dose of t4, t3 combo

    Try with smaller dose of t4 then add just tiny amounts of t3 and this fixes majority of people who have thyroid issues only

  8. HipFiggy says

    Hi. Has anyone ever taken one of those OTC “thyroid glandular” supplements with success?

    I was on Armour 60mg. A natural health practitioner (via electrodermal screening) found that Armour was causing stress to my body so I switched to Levothyroxine, which ramped up my moderate insomnia until it was nightly severe insomnia. So I wondered if the plain old glandular would help me.

    (Anyway, the Levo was not increasing my low fT3, I learned when I replaced my old MD, seeking answers to the insomnia.)

    any experience with the glandular type supplements?
    thanks
    Fig

  9. ivy says

    yes you should eat bone broth every day or as much as possible to fix the gut!…if you dont have good gut, you get malnutrishioned, and no way you can function properly ……

    this is the nature of things first gut then everything else, but to achieve it you have to get balanced hormons in blood, and maybe take thyroid therapy

  10. David K says

    I lost a lot of weight (+100 lbs) in a short period of time (<10 months) about 7 years ago. I did so by cutting down a lot on food consumption and exercising as much as I can. I believe this increased cortisol level in my body significantly and it must have stayed that way ever since then. I managed to maintain my weight for 7 years, but I do feel fatigued all the time.

    In addition, I had a major surgery in June of 2013 and March of 2014 that required general anesthesia. I took antibodies and narcotics after each surgery, which I assume destroyed my gut health (flora). I've been experiencing hair shedding since March of 2014 and it just does not stop. My hairline receded a bit when I am in mid 20's.

    I've tried all iodine supplement (potassium iodine, kelp, and Lugol's), but all of them created massive shedding after a day of taking the supplement and I felt jittery. I supposed I am very sensitive to hormone/thyroid level and something is severely messed up in my body.

    Furthermore, massive shedding also happened when I took DHT inhibitors (finasteride, saw palmetto, and beta sitosterol), which substantiates my theory about hyper-sensitivity to hormone/thyroid level further.

    Lastly, I have cold hands, feet and sensitivity to cold, but at the same time I sweat really easily and have large pores, which are contradictory.

    I have not done a blood test yet, but I think my rT3 will be high and free T3 will be low due to prolonged high cortisol levels from diet/surgeries and gut problems from antibodies. I do not think I have any other medical conditions that's causing thyroid/hormone problems.

    I just want to fix sensitivity to coldness and hair shedding. What should I do? Does anybody have any suggestions? Your input would be greatly appreciated.

    • ivy says

      did you check your thyroid? hormon levels as well ultrasound?

      it may well be that you are malnutritioned in some way..or your thyroid hormones not balanced,

      hair loss can come from low ferritin, low vitamin d3…..you should check those, esp if you avoid sun, or have no possibility to get tanned….then b12 you could check just in case…becasue all of 3 can contribute to feeling fatigue

      then you should start eating real food, kick out as much as sugars as you can…not 0 but make sure you eat good proteins, versatile food, liver, organ meat..not just lean…maybe fresh milk, not pastereuzed…

      and dont think about rt3! you are too young for that…unless you are not infected somehow?…anyway rt3 is not something TO FIGHT AGAINST but to think about why it happens….but i would save that money for the above….which is more relevant for your case

      your symptoms point to underactive thyroid…esp avoid adding iodine! and you should test for thyroid antibodies too

      • David K says

        Ivy,

        Thank you for your response. Unfortunately, I have never done a blood test for my thyroid, testosterone, vit D or ferratin levels.

        I did avoid sunlight unintentionally in the past because I had difficulties moving due to surgeries I had. Starting June 2014, I started jogging outside to get as much exposure to sunlight as possible. On the other hand, I’ve been on vitamin D supplement since January. I am not sure if getting sunlight has different effect on the body compared to consuming vitamin D supplements.

        I’ve been eating vit B12 supplements for 2 months, but I do not see significant improvement yet. Also, I took Ferrets Furmarate (106 mg of elemental iron) for 3.5 months, but it had no effect on hair loss what so ever. My iron level was 14.8g/dl last time I donated blood. FYI, I do not donate blood frequently.

        The reason why I considered rT3 being a problem was because I read numerous posts saying that severe constraint on food intake (from diet) causes body’s cortisol level to rise and conserve energy by reducing the amount of active thyroid T3. Since T4 is converted to either T3 or rT3, to decrease T3 amount, body has to convert T4 into more rT3, causing imbalance. Am I missing something here? How would I go about getting my thyroid level balanced in a natural way? Iodine supplements definitely do not work at this moment especially because I can’t stand more hair shedding. Any feedback would appreciated.

        • Faith says

          I didn’t read this post until I had already posted. Yes…here is your answer!

          The Vit D.

          Vitamin D is grossly misunderstood…even by the medical community(sorry).

          Vitamin D is a endocrine hormone…just like the thyroid is an endocrine hormone. Although there is often talk about different receptors, the endocrine system shares the same receptor…the receptor has different functions. Vit D shares the same receptor with T3. The issue is, Vit D is dominate and will boot the T3 out.

          However, to understand this issue deeper you need (and everyone needs, and most especially the researchers and medical community needs) to understand that D3 is NOT usable. It must be converted twice in order to be used. Therefore tests of Vit D (the 25,D) are as false and misleading as endos who only test T4 for thyroid! This is crucial to understand, imho.

          D3 is “CHOLECALCIFEROL” (everyone can look at their bottles and see this for themselves. D3 is animal based and IS absorbed ever so slightly better than D2 which is plant based…but not so significantly that vegetarians need concern themselves. The most obvious and grossest mistake well meaning, but unthinking, practioners make is to call D3 “active”…it is not, and is not any more than T4 is. D2 is “ergocalciferol.”

          The body converts CHOLECALCIFEROL (aka D3) into “CALCIDIOL” in our bloodstream. Then our body converts CALCIDIOL into “CALCITRIOL” in our kidneys. CALCITRIOL is the ONLY usable form of the hormone known as Vitamin D. In other words, CALCITRIOL is the ONLY active form of Vitamin D.

          CALCITRIOL is tested with the 1,25 D test. The doctors, and all the researchers on all those numerous studies, have erringly tested the 25,D…the non-active D3 and D2. This invaildates all those studies on their face…unfortunately.

          The reason this is important…and it is very improtant…is MANY people, maybe even half, have a non-harmful genetic defect in the enzyme known as CYP27B1 that over-converts the D3 you take (CHOLECALCIFEROL) into the D you use (CALCITRIOL). This is not an issue for one’s health or wellbeing…but it does mean that these people will ALWAYS test low on the 25,D test that doctors run. Always.

          In addition, anyone with a bacterial infection will also over-make the enzyme CYP27B1 and thus also over-convert CHOLECALCIFEROL into the active form…and thus have low levels. Again, it is a non-health issue…other than, the misunderstanding amongst medical practioners in telling patients to take it based on the wrong lab…because as an endocrine hormone Vitamin D is a steriod and an immune suppressant…not so good for those with bacterial infections (very good for those with autoimmune however).

          Hence, people should always ask for (or demand) the 1,25 D test along with the standard 25,D test that they run…to ensure an actual def before ever taking, imho. Those with the genetic make up, or with bacterial infections, will have low 25,D (what they test) and normal to high 1,25 D (what they don’t test).

          Also, for those with the Vit D Reversal issue…taking D can also make them feel increasingly unwell. I know I get increasingly tired and ill feeling on it.

          Sun is always your best option, the body will never over-make the active form.

        • ivy says

          david,

          I will advise you this, its ok to learn but its really not ok to make conclusions based on forums, other peoples opinions and half knowledge. So for you to try to understand how rt3 and t3 function and hence conclude something beneficial for yourself is futile mission, and not needed to do so.

          1. There is maybe no other way but taking thyroid hormon supplements, to many people, and myself included this helped fix my gut!it helped tremendously for my metabolism to start using food i eat properly, to some patients even taking thyroid replacement wont help…this means either they have not found their root cause or they have many other problems….there will always be exceptions to any rule.
          So your task is to determine your tsh, ft3, ft4 lvls and antibodies. If your tsh shows clearly you are underactive, plus your ultrasound….then you cant go aroundnthis naturaly becasue the problem did not start just 1 year ago, it may be on for years….remember first time you started beeing cold in not normal situations ……like in the summer or somethingmlike this, how long ago was that?
          2. Regarding vitamin D…the one obtained from the sun is water soluble, its much better form becasue it performs many other activities……i cant elaborate on it now, its really irrelevant since so many of the unknowns is there regardingnthis vitamin, but it has very protective role, against cancer, it lifts your mood, energy lvls, and helps immunensystem A LOT!! Supplement is not ideal, but is ok…if there is no other option….i restored my vit d3 lvl by 25% only in 4 weeks of tanning during the summer time…..so during 15 mins in the sun between 12_2 pm you can get total dose for a day in amounts to 20 000 i.j
          3. To help naturally your thyroid you must kick out gluten, corn! Eat 30% of carb,protein and fats……and start eating real food…….then supplementing iron is ok, with vitamin c, b complex…….you should test ferritin lvl that for you as a man mus tbe around 90 if its 50 or lower you are mulnourished…….in that sense….and it has no relation to ferum blood lvls…ferritin is beeing depleated to keep blood lvls unchanged until one day…..that body is preventing to come by slwoing down metabolism

          So your task is to wake up metabolism, and how you do it:-) there is lot more to learn …. if necessary takingnthyroid hormon therapy to restore optimal lvls of ormons in blood means tsh to be from 0.6 to1.5 this sort of lvls and other hormons in the interval!!……and so you have enough to do only there and leave theories of rt3 to some that wants to work on that……..thinkingnhow you will solve this puzzle over night is not realistic especially trying to figure out something not so relevant as rt3. Every body produces this!!!be it healthy or a sick..its just one little thing in the process and you dont understand so many of them so why to other about rt3

          Best of luck……

    • Faith says

      Hi David,

      I am sorry that you are experiencing this. It sounds like you have done your reading and tried everything mentioned.

      Two myths abound on the internet regarding thyroid. One is that iodine helps the thyroid. Iodine can only help when one’s thyroid is truly def of iodine (most peoples thyroids have stored a lifetime supply by the time they reached adulthood if they ate a typical or even better than typical western diet). True iodine def is rare…it would be evidenced by very high TSH, very low T4…and is only one of the possible reasons for those labs.

      In truth, the thyroid “digests” iodine…renders it bio-available. Iodine is then attached to a thyroid molecule (T4 = 1 thyroid and 4 iodine). The two compounds that deal with iodine in the thyroid are Thyroid Peroxidase (TPO) which is the enzyme that converts iodine into something we can use, and Thyroglobulin (TG) which binds it on the thyroid molecule. BOTH TPO and TG are the primary subjects of attack in thyroid autoimmune conditions which comprise the bulk majority of thyroid patients. Thus, taking iodine increases the tow subjects of immune attack.

      I strongly reccomend that people have iodine tests PRIOR to ever taking iodine to prove def status. The risk is setting off an immune attack and possible thyroid crisis.

      Regarding cortisol and thyroid. While the hypothalamus regulate both…and does so by instructing the pituitary to signal both…the signals are two completely different compounds. Furthermore, the hypothalamus reads two completely different things in determining what is needed. There is no other biological connection to the two. In other words, cortisol is not needed for thyroid production or use…and thyroid is not needed for cortisol production and use. It is an utter myth started and perpetuted on the internet. Sorry that there is not better information out there.

      Hair lose can be related to numerous hormonal and nutrional deficiencies. Estrogen is the usual cause in women…I am unsure what it is in men. My best reccomend is to get a good multi-mineral and have a hormonal base test. Hope that helps, sorry I don’t have more on that.

      RT3 will be high if you starve yourself or have an underlying illness. FT3 will also be low in underlying illness…but can have other causes. Did you suspect an underlying illness??? If so, then correcting that should correct the thyroid levels (if they are off).

      One thought I had…the usual symptom of adrenal issues is if you cannot go without eating for long. For example, super grumpy or irritable if you don’t snack.

      It can be hard to track down just what is going on with the body. Throughout the day our hormone levels fluctuate. Standard ranges only mean that this is where they usually are for most people who have gone through that lab…but do not necessarily reflect what is normal for individual people. In my years of researching this kind of stuff, I have come to the conclusion that the hormonal labs (where there is not gland failure…ie cancer/tumor/atrophy/inflammation/cysts/etc) that odd levels are merely the body adjusting normally adjusting itself to whatever else is going on within us. For example, being sick with the flu, the body will create excess RT3..which slows us down so that we will rest and give our immune system a chance to heal itself…and this is what it should do. When the flu is gone, the RT3 naturally goes back to normal levels.

      The problem is, by middle age…even the best diets are misguided (we tend to negate trends and fads 10 years after they start)…and def. We inject disease into people who then breathe it out infecting people with man-made germs that the body has no resources for. We have pollution we cannot avoid. In response, our bodies begin breaking down…we have illnesses that the medical system is clueless how to respond to (because they only know how to match symptoms to meds)…and we end up with odd labs that no one knows how to interpret.. Many will tell you how to…but as you found out through your own trial and error, they don’t really know either.

      I am sorry that things are not more advanced…or that doctors don’t often use what they learned in med school about how our bodies actually work. I too wish I had better answers. I wish you the best, I hope something I shared helps.

    • Faith says

      PS: I spent 1,5 years on antibiotics…however, my digestion problems started before taking them. Most food I eat comes out clearly recognizable in the way corn does for most people.

      That said, I have been hearing of a lot of people who are having the same issue and who haven’t had antibiotics.

      Probiotics are the usual reccomend. They haven’t helped me.

      Digestive enzymes are the second reccomend. They have only minimally helped me…and then, not really.

      Fecal implant is the next thing they try. I have not tried this.

      That said, I saw an odd video a while back where they put a camera in someone’s stomach when they ate ramen noodles and claim that even 36 hours later they are not broken down. They claim it is a preservative. Leads me to wonder is this preservative, or something like it, isn’t being put on a lot of the food out there.

      In the mystery, and for what its worth, I digest processed food better than whole. Mangos, apples, orange juice, greens, grains, come outvirtually untouched.

      Again, I wish I had more for you…sorry. I can only add to the wondering.

      Best of luck.

      • David K says

        Hi Faith,

        Thank you for your response. I read your previous post on vitamin D and it’s interesting how active vitamin D can compete with T3 in the body. I’ve been consuming vitamin D that’s in hair supplement I take, which is about 670 iu per day. Maybe prolonged consumption of vitamin D has led to cause thyroid problems. I am going to see what other alternative I have for the hair supplement I am taking currently.

        I completely agree with your statements about diet in general. I’ve never had issues in early 20’s, so I kept eating anything I want, including a lot of meat, no veggies, a lot of grains, and fried foods. Now that I am in mid 20’s, my body has been damaged quite a bit from bad diet habits I had in the past. This is very stressful and I hope somebody would have told me in advance.

        I am going to get some blood test to see what is really wrong with my body. The test will include TSH, free T3, free T4, rT3, cortisol/adrenal levels, free testosterone, DHT, ferratin, and vitamin D 1,25 levels. I’ve been throwing shots in the dark for a while, hoping that random supplements I take would miraculously fix my issue. I am sick of getting bad results and additional shocks I am causing by throwing random treatments. I will report back when I have results from the lab. Thanks everybody.

        • ivy says

          Yes perfect plan!

          And defo kick out gluten and corn, try just for 3_4 weeks, if you sense any improvement , continue, since this is natural help to your thyroid…and dont kick it before y have a plan how to substitute….dont substitute with rice:-) ….in huge amounts or potatoes:-) ……try looking for some LCHFbreads that you will bake instead and increase coocked vegetables and butter, olive oil and other fats, coconut oil is praised by benefits…..dont be afraid to eat fats:-)

      • ivy says

        Beeing 1.5 years on antibiotics is more then enough to ruin someones gut for a lifetime, restoring goof bacteria is hard task, because taking probiotics is like a massage, if you have back problems massage will only fix you short term, to make pain easier, but the underlying problem is les diversity…

        We all have 3_4 kg of gut bacteria!this is 10x more genes, and that gut bacteria is like our second brain, those creatures make you like some food more then the other, this is a problem of chicken and egg, if you will eat sugars you end up with such bacteria, but once you loose some of the species becasue of taking antibiotics for such a long time….its veery hard …to get it back, and this is only now beeing studied

        Maybe going to some ecological farms with domestick animals could help restore some of the bacteria…..like workingnon a farm, earing fermented food, sauerkraut every day….this is what i would start

        And taking system enzimes, betaine hcl’pepsine, and such stuff i agree is just mild short term help…nothingn serious

        And digestion of this kind, when you miss gut bacteria defo cant be solved by thyroid hormon replacement of any kind

  11. Emily Kewley says

    I have had ‘CFS’ for 14 years. and then recently found out I had low T3 free and subesequently low oestrogen and progesterone. I have been treated with thyroxin tablets and have been using oestrogen and prog creams to try and get my levels back to normal I am a lot more capable physically than I have been for years , though still get tired easily/ feel hungover/ headaches. I am an aussi living in Denmark with a lack of resources here, as the health system is VERY against CFS and small minded when it comes to looking outside the box. I am being treated by a doc here, but would be grateful for new contacts. Does anyone have any contacts in DK that could help me?

  12. Becky says

    I had undiagnosed hyperthyroidism for 3 1/2 years after an abscessed tonsil. Ramping up, my T3 was in the low range and T4 with high high normal.tsh was normal. Things were still not right with the low normal t3. I was saying things wrong without knowing it. And there were others symptoms-like tingling toes/legs. I suggested to the Dr cytomel. It made my heart race for about two hours. The doctor suggested time released compound t3 with my t4. I was much better. While on t3, I would have reactions-boils-from dental injections for example. I started taking my morning thyroid pill with purified Or distilled water. Wait one hour. And them eat an have coffee. Wait to take medication/vitamins for four hours. I am not taking T3 now and my t4 was reduced from 125 to 112. My new doctor is upset because my TSH is below normal. I told him if I took100 that my t3 would be out of range low. I feel great on 112 but tend to get pretty cold at 70°. I feel that if I took 5 µg T3 per day with my T4 that I would be so feel so good. Undiagnosed hypo was so bad for three years that I lost weight. I had arthritis in my fingers. I had bumps on my knuckles. I had Neck pain constantly. I was highly allergic to MSG. I had swelling from head to toe-eyes, face, chest cavity, ankles…. 112 pounds. I felt like I was 90 years old. I couldn’t walk to the corner of the sidewalk. I went hyper from taking prednisone prescribe for tennis elbow. The prednisone evidently Addressed an adrenal problem. When I went hyper. every ache and pain and all swelling went away. I remember telling my brother that I felt like superwoman. I could roll around in the bed again just stretching. Could Walk or run around the block again. It take from the experience that the aging could age more gracefully if on adequate levels of thyroid replacement. And those who are thyroid deficient could have a better quality of life if on adequate levels as well. This means having better than the minimum t3level. This means having t3, 1/4-1/2 within range. So, if the normal range is 1-32, wellness is a minimum of 8-16. Once on replacement, I believe the tsh means nothing unless it is too high. Tsh tells the thyroid gland to make t4/t/3. If taking thyroid replacement pills, the pill is in charge. I will find another dr if mine doesn’t understand. I have already been to an endocrinologist locally and to one at Vanderbilt. Some people just need to take the pill right-nothing for 1hour, no chlorine, bromide, fluoride, coffee or tea. If that doesn’t work…..add t3?

    • Faith says

      Hi Becky,

      I agree, many people could enjoy a better quality of life if they had thyroid levels that were right for them.

      I think that is the biggest challenge, is to get to the point where we can realize that our numbers may be different than the norm and yet still right for us.

    • HipFiggy says

      Becky,
      You mentioned Vanderbilt, so do you recommend whomever you saw there? I am looking for the right doc in or around Nashville. My free T3 is low even when I take meds.

      My close friend is pushing for me to get an endocrinologist. I’ve always seen integrative or holistic physicians.

      I was on Armour several years; found it to be stressing my body. A new doctor put me on Levothyroxine this summer; I got terrible insomnia; toyed with dosing; no change. I left that doctor for another doc’s Nurse Practitioner; she saw my free T3 was still too low. That was the first I’d known about what the free T3 number was supposed to do.

      Am supposed to see her for a follow-up to last week’s bloodwork and she will probably recommend something T3 besides Armour. I can’t keep going to her because their clinic switches to direct-pay soon.

      I’ve been off all meds a couple weeks, am having bad fatigue.

      • ivy says

        hello there, its not about what you were on but what doses….armour is unbalanced treatment it contains too much t3

        have you ever tried anything along physiological lvls like taking 100t4+ 6 t3?

        becasue if you take too much t4 your body will automaticaly fight against it making lower t3 if you then add too much t3 to that combination (like in armour)…you will overstress body…it cant get rid of so many redundant hormons….

        taking too many make you feel fatigued as taking too little, but many times people take too many meds, what i have seen so far

  13. Lila says

    My fluid retention improved markedly with bentonite clay. I use bentonite clay externally to detox. I smear it on my body, covering at least half my body, wait an hour while making sure it does not dry out, then go shower to remove it. It made me lose most of the fluid that my body retains, going back from size L pants to size M.

    I have euthyroid sick syndrome, normal blood values and symptoms very much resembling hypothyroidism. I was very ill and not able to take care of myself anymore at the age of 22, suffering extreme fatigue, very much muscoskeletal pain, feeling very cold all day, and a lot more symptoms.

    I have been taking dessicated thyroid for over the last 15 years, following the work of John lowe, which did improve my situation, but over the last 10 years, ive slowly become more sick again, leaving me to need more and more dessicated thyroid.

    At my worst period (age 29), I had built up to 60 pills of Thyro-Gold a day, without any signs or overstimulation (hyperthyroidism) (the equivalent of 120 armour thyroid pills). I still had symtoms of hypothyroidism, but less than before.
    This is an extremly high dose, and I cannot recommend it to anyone at all (this dose would kill a normal person) , but at the time I was very very ill, once again no longer able to take care of myself at all even inside the home (though still better than before I started the thyroid pills), the mainstream doctors said “your blood is good so we cant do anything, you just have to live with it” so I was very very desperate.
    When at some point my brother stumbled upon new research I started taking iron, something I had not done for long, because I get a lot of bowel problems from it, and I started needing less and less thyroid pills. Currently I need only 1-3 Thyro- Gold pills a day, as long as I keep taking iron, I still suffer from a lot of hypothroid symptoms, but at least I can take care of myself inside the home, (I am still homebound).

    This webpage seems to describe what I have, I have a lot of problems with inflammation (candida, leaky gut, sinus problems) however I am not sure how to treat these more permanenly. I drink a lot of Pau D’arco tea, which improved the candida, I get medicines for candida and parasites from my holistic doctor, but nothing seems to aleviate these problems for longer than just a short time. I also take probiotics for my bowel, unfortunately they are too expensive to take a higher dose. Each time one infection is treated, another will show up, my immune system does not seem to work very well. My holistic doctor does not know how to help me either, he does his best but none of the doctors seems to know how to really fix these problems, neither the thyroid problems, nor the repeat infections. This page may hold part of the answer.
    I would very much like to try a diet to reduce inflammation, since that is something I never tried, but there are very little food producs I can eat, my digestion is very bad, I take digestive pills for this, but even on those the only food I can eat without getting ill after each meal is quinoa and raw or cooked vegetables, and once in a while some salt-less meat, but I can only eat it separately, in combination with the quinoa its too much.

    I will print out these pages and take them to my holistic doctor,but if anyone has any additional advice on what I can do to combat any of these problems (or a part of the problems) advice is very, very welcome.

    I would also like to come in contact with anyone who has similar problems, especially if they also are very ill.

    • Faith says

      Lila,

      My heart just goes out to you and I am so sorry that you are sick and struggling. I too have been sick and struggling for years, and like you trying to find answers. Yes, it is very discouraging how little doctors know…but many of their hearts are in the right place.

      The poor immune system and chronic infections sounds similar to late stage Lyme disease. If you have the availablity of getting tests, you may want to run an CD57; C3a; and C4a. Quest does these…one of your docs may use Quest. Lyme tends to turn down the CD57. C4a tends to be high in Lyme (C3a in Lupus). I would run these before the cash-pay Lyme test…the standard Lyme screen only has a 35% chance of picking it up (so has far too many false negatives esp in late stages), the test you want is the Igenex one. It is $260 upfront, if you have non-aid health insurance they will reimburse you…so this is why I suggest running the other screening tests first to see if it is called for. For what it is worth, the symptoms of candida and Lyme are nearly identical.

      As well, autoimmune stuff will give you low grade fevers. Have you had your ANA or FANA yet?? If not, you might want to see if that may be behind it.

      All that said, the greatest help I got was from doing the 23andMe.com genetic test…but not in the way most people have. It is $99, but so well worth it. After the test you run it thru Genetic Genie (free) and get a basic report on genes you have that may be messed up. From there the general thing people do is take whatever they would make after the defects…however, that made me really much worse…so, I made a list of all the things the report said would be affected to see what, if anything, was truly affected…and asked my doctor to test them. Turns out I was not making a few things well…none of which are what current belief covered. For example, I don’t make the amino acid Taurine very well…and the supplementing of that has helped tremendously…went from using a walker and needing a wheelchair to being able to walk without a cane.

      Like you, I also have digestion issues…in that most food I eat comes out untouched (like corn does for many people). And I have increasingly been hearing about a number of other people who are having a similar issue…also not really being helped by digestive enzymes or probiotics.

      One the meat issue, you might consider grass-fed organic beef or I have found great success with lamb. That said, meat is said to cause inflammation.

      Juicing might help…there are two schools of thought, one is juicer for no-fiber/just nutrients…the other is belnder for all the fiber…both have healing properties so it is just a matter of person experience or preference.

      Dr. Joel Furman has a PBS special on the other day about an end to dieting and he mentions why the diets out there (ie Paleo) are harmful…he suggests similar to what you are eating…you might find it interesting. He goes heavy on the cruciferous veggies that are not so good for people with thyroid issues…and I don’t do well on greens…but other than that, he seems good.

      Have you had a RT3 test??? If not, you may want to…when one is sick, their body often turns T4 into RT3 rather than T3. Too much (over the range) RT3 can make you feel poorly and hypo.

      I know many practioners and people like dessicated thyroid…however, it is not preferrable to people who may have immune issues with their thyroid…as it is just more of the things the immune system is attacking. Don’t know if you know about a newer thyroid hormone called Tirosint, it is T4 without any fillers…and is by far the only one I have taken that didn’t make me feel yuk after. That said, I am on T3 only…and long for the day when my body can handle T4 again.

      Hope something I said helps, again I am so sorry that you are going through all this…hang in there. The more you keep searching…you will, here and there, start piecing it together. <3

      • Honora says

        I read a post recently where someone (and I can’t remember who they were but they did a lot of researching of pub.med type articles) tried to find out the studies that supported or even suggested the idea that taking biological forms of thyroid hormone stimulated antibody formation which went on the attack the thyroid gland. They said they only found 1 study, done in the 80’s which actually showed taking NDT, WTE or whatever one calls it actually lowered anti-TPO levels.

        Despite this, I’m sticking to the synthetics as I feel OK but if I ever did switch, it would be to the New Zealand bovine origin stuff. Even though I live in NZ, I think I’d have to get it from the USA. Annoying. As Faith has pointed out, the idea of taking the Armour pig stuff is pretty revolting due to the dreadful overcrowded pestilent conditions in which these poor animals are reared.

      • Diane says

        Faith-

        Thanks for the great post. I have a few questions. I’ve done 23andme as well. It’s interesting. I had an OAT test done and I think, if I’ve read it correctly, I have a break in the Krebs cycle @ tartaric acid. (Doing this from memory here.) I did some reading and began taking taurine, seem to tolerate 1500mg daily the best. It has been a huge aid for me. But, I curious what on your 23andme pointed you in this direction. Can you share?

        Also, if one is taking t3 only should a blood test show normal numbers for this or will it always be elevated? I’ve had a couple blood tests one taken when I didn’t take my dose in the AM that was 5.5 I think and one when I did take my med and it was 7.9! From what you’ve shared, it seems my liver isn’t getting rid of it or it’s too much. I’m slowly weaning off. I can’t say I’ve ever felt great on t3. Or any thyroid for that matter. I always thought I wasn’t taking enough. Now, I realize with a conversion issue, it may be something else entirely.

        I found this to be a great explanation of conversion. It’s a complicated function in our body. Maybe this will help others to understand what’s going on…..

        http://www.nahypothyroidism.org/deiodinases/

        Thanks again, Diane

        • Faith says

          Hi Diane,

          You ask some really good questions.

          After the 23andMe, and the reports, my doctor kept trying all the usual supps that the “experts” say you should take only they made me worse. After about 8 of these tries, I made a list from the reports of all the things it said would be affected. Simple logic suggests that if someone had a double defect in the MTHFR that they would either be dead by middle age –or- some other gene/enzyme adds a methyl group to folate that they just simply don’t know about yet. Anyways, from that list I had my doctor test the things it said were affected to see what, if anything, were indeed affected.

          It was these tests (UAA, OAT, Pharmasan’s Neuotransmitter test, and a few other assorted individual tests) that we found that I was high in Cystine and low in Taurine and Glutathione…the two things you would make after Cystine. Also high in Dopamine, high in Norepinephrine, and low in Epinephrine (aka adrenaline). Both of these are at the end of the Methyl Cycle…and neither are covered by the “experts.” We also found a corresponding imbalance of high Glutamate and low GABA which make each other.

          Although I have been able to identify the exact enzymes I have issues with, there are no known treatments (yet)…and I have come to the conclusion that while it is really great to find the exact pathway that things are breaking down…that maybe all we are doing is watching the disease process up close. In other words, we are just seeing the process by which the body is down-regulating itself. Indeed, many of the other disease groups are finding particular patterns common among them. Rather than assuming the defects cause the disease…my view is that the disease is causing the defects…and that tending the particular defs is just mitigating the symptoms (sort of like pain meds helps one to deal, but doesn’t cure the cause of the pain).

          Regarding the blood T3 tests and taking T3…yes, labs would likely be wonky. Mine tend to be, esp my TSH which goes all over the place from way too low to way high. Although, I suspect a hypothalamic/pituitary issue

          What I know about the liver is this: When we eat, the liver takes about 4 hours to process the food we ate. During that time, it is not processing our hormones or not processing them well. This is why they say that sleep is restorative…it is not the sleep, but rather that we are not-eating so that the liver can finally balance our hormones. From what I know about Phil (from Fat Sick & Nearly Dead) and the juice fasting and the way his body just restored itself…I surmised that it was the extended fasting that allowed his liver to heal his body…and that the juicing simply let him extend the fast longer than one could if they were just taking water. Since people tend to eat multiple times throughout the day…the liver would be challenged to process the excess thyroid.

          This could be good or bad depending on what one’s particular body was doing with it. Excess thyroid can cause bone loss (which maybe should be checked regularly if one is on extended T3 treatment)…or the minimal excess could keep one from going low. A doc from the Mayo tried to explain that taking T3 would cause spikes and drops (too high/too low) throughout the day…in which case that small excess is probably great. I side on the checking each year or every 6 months. As well, I have become familiar with how too much feels to me (which is similar to how too little feels with a slight variation) so I can keep my doses in check.

          With all things there is a risk…and that includes T3 treatment. We each have to weigh them for ourselves. I know no way to have a consistent level throughout the day. I take it 10-12x a day. It is just one of the downsides of pills. I also tend to feel like our bodies compensate for that. I take an rx that is GABA (Baclofen) and it is pretty clear that my body knows when to expect it. I’d like to think it does the same with the thyroid.

          That is a good description…thanks for linking it. One thing that no one has explained, and you may also experience with the genetic work…is that it can seem like the body sometimes only can use what is freshly available (as like with B12) and that the storage amounts (ie B12) the body doesn’t seem to access as well. I find this with thyroid, at least for myself, as my dose and need keeps increasing over the years.

          There are issues with the description you linked…(referring to the D2 section) TSH is not regulated by T3 levels, it is regulated by the hypothalamus (which may be regulated by T3 levels). Also, if the pituitary was so easily thrown off, everyone’s bodies would be doomed. While it is true that doctors should not dose based on TSH…but this is not why. As well, it is making an odd chicken and egg argument…saying that being overweight/etc causes down regulation when indeed wonky hormones cause overweight/etc. Too little thyroid causes depression…not the other way around (unless depression is from other cause), antidepressants suppress thyroid (what makes thyroid-caused depression worse). TSH is not linked to conversion of T4 into T3…TSH instructs the thyroid to produce T4 and then carries the T4 into the bloodstream. Most of the rest seems ok. It is difficult to get exact information when studies or papers make wrong assumptions (ie Vit D studies using the wrong Vit D tests).

          It is a lot like the genetic stuff, causes the condition or is a result of the condition…all they can say for sure is that: low T3 occurs concurrent with this condition, not which caused which.

          Anyways, hope this helps.

          • ivy says

            i want to add something
            to thyroid hormons functioning

            you said it : TSH instructs the thyroid to produce T4 and then carries the T4 into the bloodstream.

            this is becasue it goes like this TSH rises when there is fall in total T4….and low ft4….so TSH is more regulated by t4 lvls…..this is why when you go t3 only some patients experience rise in TSH if they are not on supressive doses but small one…becasue body needs t4 wich is storage of energy not t3

            t3 in normal thyroid patients with no other illneses should be used in physiological amounts, i think these are up to 12 mcg ….

            its no wonder to me that someone on t3 only cant feel well enough, becasue one has to have ft4 to ft3 between 3-4 ratio……and normal blood levels, and even then if there are malnutrition evidences in the body, like low ferritin, low b12, low d3…..person can not feel energetic, becasue its not the thyroid hormons only that determines our stamina , but the overal composition of the body so to say!
            its a complex issue, and it takes time to heal and mineral vitamin defficiencies to fill up!!
            this takes complete chnage to dieting, becasue its many times bad diet that led to thyroid problems…….
            one should eat liver 1x weekly minimum! who eats it?

            these are things i have learnt from my own body

            i take 6 mcg of t3 plus 100 t4……..this gives my blood results balanced……

            i really dont think for majority of patients its wise to override those blood tests becasue thats moving away from logic, and there must be a good reason why to do that….many of patients just try to heal everything with thyroid hormons in 1 day!

            • Faith says

              Hi Ivy,

              You are doing well at putting everything together. Just a few pieces to add.

              The pituitary (TSH) is not regulated by T4 or T3…instead it is the Hypothalamus that is: the hypothalamus then uses Thyrotropin-Releasing Hormone (TRH) to tell the pituitary to release TSH, which then tells the thyroid.

              T4 is not-needed by the body. T4 is the storage form of T3…and its only use is that it lasts longer in our system than T3. T4 must be converted into T3 in order to be used by the body.

              Many people have low-grade undiagnosed health issues and often the only abnormal lab they have is their thyroid labs leading many to believe (falsely) that their issue is the thyroid…and even though it can look that way, their thyroid is functioning perfectly fine…only it is functioning in response to some other underlying health issue. In many of these cases, attempts to correct the thyroid often prove futile.

              The most telling sign of this is normal TSH, normal T4, low T3.

              Many people will mistake those labs to mean that they have a conversion issue.

              I have seen no evidence that iron has anything to do with thyroid function. Iron is, however, caused to become abnormal in underlying illness. Because underlying illness is the cause of both factors…many assume incorrectly that they can fix each other.

              In many people who benefit from B12 have normal levels of B12…there is no medical explanation for this (yet). I suspect that this has something to do with the body having a breakdown in its ability to use what it has. I believe that this is similar to what some might call thyroid resistance (that is not otherwise explained by excess RT3, Vit D, or genetic receptor defects)…in other words, someone has normal T3 but is still genuinely hypothyroid…failure to be able to use what one has. I do not (yet) know the exact pathway by which that happens.

              Vitamin D is something the body makes…and has no bearing on one’s nutritional status. That said, it is poorly understood even in the medical community that should know better leading to gross misunderstanding in the public. The test that they run for Vit D status is called 25,D this is the storage form of Vit D comparable to T4. The 25,D test tests for D3 and D2 and adds them together. D3 is called Cholecalciferol (everyone can check their Vit D3 bottle)…D2 is called Ergocalciferol). BOTH of these are storage forms and must go through 2 conversions in order for the body to use it.

              1) Cholecalciferol (Vit D3) is converted in our bloodstream into Calcidiol; then

              2) Calcidiol finds its way to our kidneys where we convert it into Calcitriol…the ONLY usable form of Vitamin D

              The test for Calcitriol is the 1,25 D test.

              Here is where the confusion comes in (besides that people do not have the correct information to begin with)…people who have a certain genetic code (many have this) and/or have a bacterial infection…will over-make the enzyme called CYP27B1 which converts the D3 you take (or make from cholesterol in the fat under your skin in the sun) into the active Vit D Calcitriol…so as to over-convert it.

              Those who over-convert Vit D will ALWAYS look low on the Vit D test. This is why the 1,25 D test is required in order to assess one’s true levels of Vit D. In the cases of those with bacterial infections, because Vit D is an endocrine steroid and immune suppressant, it is imperative that they assess their 1,25 D before ever considering taking a Vit D supplement.

              Also, I take T3 only and do just fine on it. I have been on T3 for over a year and see no ill effects from not having T4. For my own self, my personal experience negates the old thinking that thought T4 was needed for anything…but that is just my view.

              Hope this helps. :)

              • ivy says

                hello Faith, oh i replied to some of the things in the reply below….but let me add few more….i think that are crucial from my experience

                1. low grade inflamation can be casued by thyroid not working properly!
                this is what i noticed when i reduced my hormon levels….so i was on 150 mcg t4 this brought me hyper…even all above 75 mcg i had hyper symptoms, but my TSH was stable below 1 on 150 mcg dose…when i reduced it to 100 t4 + 3mcg t3….so this is quite some reduction….i experienced low grade inflamation back! starting from my thyroid that was struggling to make up for the hormons i need…my lymph nodules appeared! and i had them constantly enlarged before i ever took thyroid hormon therapy! had them for years
                so saying which is first…i would say this: thyroid hormon therapy that is not balanced will always have as a result low grade inflamation
                there is logic behind it too, the body is not clearing from the system all it should in time, is constantly under low stress!

                2. i want to say i dont agree that body needs only t3. there is a reason why there is mechanims t4 then t3…and i dont know exactly what that reason is except that some tissues in body want to have their own pace of t3 , and some tissues need the constant t3 thats been secreted on a daily basis by our thyroid!! so no conversion at all!!
                so the logic is: if your thyroid is broken you should only replace those amounts issued by thyroid and not more!
                this is my experience….why?
                becasue if you will add lets say 20 mcg of t3 the body will instantly reduce your ft4! and this happens SOOO many times, i have seen it..its normal way body responds to too many t3 even if you take no t4 with it!

                this is how body protects from too much ft3…..there are exceptions to the rule,

                what has happened to me when i was taking 25 mcg of t3…this was clasic hyper, my hungar grow to the extremes, i was getting huge sugar blood spikes, and then panick attacks triggered by sudden drop in sugar lvls……i got dhiarrea!

                so my understanding is…that t3 is not helping at all digestion its the t4!….also t3 messes around with some neurotransmitersin brain!! so one gets exchnages from euphoria!..then disspair

                but for majority of people i think its very good to keep their body as they were, and not depleating from t4…becasue some of them will notice after 80 days they can not go without t4…..for whatever reason there may be…..

                also i think body is able to adjust to whatever you give to it! i could have gone t4 only on 150 mcg t4 for who knows how long…..and suffer not even knowing there could be better until i would probably get some sort of dementia or whatever…..after 10 years or 15…..

              • ivy says

                oh i am firm believer that thyroid problem is mostly result of bad diets for years! and in critical period of life from 14-22 years old! many people have no idea what good diet is, becaue its extinct from our habits!
                so low iron is going hand in hand with low metabolism caused by low thyroid!
                i evidence this..and also evidence how hard it is to replenish the lost balance! becasue it only says this, my kitchen brough me there…..digestion!! not working well in so many thyroid patients why?…digestion is the root cause of all……and its all like one vicious circle, my ferritin and iron lvls improved after i started taking thyroid hormon replacement it goes slow! but my ferritin went from 6 to 34! this is huge improvement and most of that came from chnagning diet ….starting to eat bit better but that was not enough: lean meat is not enough!……then taking thyroid therapy improved my digestion a lot! ….then i hope now when i finally got good thyroid therapy …it will imrpve even more becasue i notice my appetite is going back to where it was longlong time ago when i was healthy person …….thyroid causes bad protein digestion….and its all so interconnected…..this is how low iron comes in place too!! what happens is this
                1st you become low in iron, minerals vitamins..
                2nd your thyroid starts falling apart in lets say 2-3 years time…
                3rd you go hyper first then hypo when things gone so that you can see it on the ultrasound

              • ivy says

                oh on t3 only there is a guy paul robinson who wrote a book, he is on t3 only for 17 years, so there are people who can do it…..i only firmly believe they are exceptions to the rule

                i know my personal experience , 25 mcg of t3 was like living hell to me :) and it was not easy to spot on it showed only after 8 days :) like problem it was together with 100t4, but i was on 150 t4 before….
                also when you dont take t3 you fall instantly….not taking t4 is no big deal…i love that cushion it provides, also there is no reason for me to go t3 only….i know you have lyme and this is something not connected to thyroid…..but i dont think t4 and t3 are so easily interchnagable..becasue i have seen how too much t3 makes me another person, this is like face lifting! yes you can do it…but is this ok?

              • ivy says

                oh thanks for vitamin d explanation this is one of the most valuable info i took from reading you here…there are other stuff too :) i read many researches on vit D and its all still fresh, but i think i remember its all so not well researched yet….i must check my 1.25 form….becasue my 25 form shows i am little under..and when i supplemented i got moles sensitivity! it was just not coincidence i repeated the experiment in short period of time and it got even sooner and it was so that my mole would hurt!….so i stopped supplementing
                the thing is…vitamin d is connected to thyroid regulation in a way i dont understand ….but i read study on it too…..it was noticed that TSH varies according to seasonal effect, and my idea was it has to do with the sun and maybe citamin d lvls…but forgot must repeat the readings :)

                also vitamin d is not converted only in kidneys but in liver too :) ..i think i read that too….

                and one veeery interesting thing i found…there are rats that naturaly have no vitamin d since they live under ground called naked mole rats…they have 0 vitamin D and no cancer, and live very long!! this is why tehy did so much research on role of vitamin d on cancer…and trying to connect d3 status …..but apparently the best vitamin d one can get is from the sun :) and one more info i remember 10-20000 i.j. one can get per day from sun!! :) so its huge!! :)…also the VDR vitamin d receptors are all over the body….and some say good vitamin d lvls are needed for the good energy lvls, this is why its so often mentioned together with thyroid, as well as iron…becasue thyroid affects metabolism…hence the connection….also iron is needed ingerdient for oxidative metabolism….absorbed in tiny space in duodenum! and if one has bad digestion no way he/she can replenish iron,

                also vitamin d is just like thyroid essential for functioning of everything in the body, i think this is not just pure coincidence those 2 receptors are in all cells and they have similar form of working from prohormon to active hormon :)

        • Faith says

          Hi Diane,

          You ask some really good questions.

          After the 23andMe, and the reports, my doctor kept trying all the usual supps that the “experts” say you should take only they made me worse. After about 8 of these tries, I made a list from the reports of all the things it said would be affected. Simple logic suggests that if someone had a double defect in the MTHFR that they would either be dead by middle age –or- some other gene/enzyme adds a methyl group to folate that they just simply don’t know about yet. Anyways, from that list I had my doctor test the things it said were affected to see what, if anything, were indeed affected.

          It was these tests (UAA, OAT, Pharmasan’s Neuotransmitter test, and a few other assorted individual tests) that we found that I was high in Cystine and low in Taurine and Glutathione…the two things you would make after Cystine. Also high in Dopamine, high in Norepinephrine, and low in Epinephrine (aka adrenaline). Both of these are at the end of the Methyl Cycle…and neither are covered by the “experts.” We also found a corresponding imbalance of high Glutamate and low GABA which make each other.

          Although I have been able to identify the exact enzymes I have issues with, there are no known treatments (yet)…and I have come to the conclusion that while it is really great to find the exact pathway that things are breaking down…that maybe all we are doing is watching the disease process up close. In other words, we are just seeing the process by which the body is down-regulating itself. Indeed, many of the other disease groups are finding particular patterns common among them. Rather than assuming the defects cause the disease…my view is that the disease is causing the defects…and that tending the particular defs is just mitigating the symptoms (sort of like pain meds helps one to deal, but doesn’t cure the cause of the pain).

          Regarding the blood T3 tests and taking T3…yes, labs would likely be wonky. Mine tend to be, esp my TSH which goes all over the place from way too low to way high. Although, I suspect a hypothalamic/pituitary issue

          What I know about the liver is this: When we eat, the liver takes about 4 hours to process the food we ate. During that time, it is not processing our hormones or not processing them well. This is why they say that sleep is restorative…it is not the sleep, but rather that we are not-eating so that the liver can finally balance our hormones. From what I know about Phil (from Fat Sick & Nearly Dead) and the juice fasting and the way his body just restored itself…I surmised that it was the extended fasting that allowed his liver to heal his body…and that the juicing simply let him extend the fast longer than one could if they were just taking water. Since people tend to eat multiple times throughout the day…the liver would be challenged to process the excess thyroid.

          This could be good or bad depending on what one’s particular body was doing with it. Excess thyroid can cause bone loss (which maybe should be checked regularly if one is on extended T3 treatment)…or the minimal excess could keep one from going low. A doc from the Mayo tried to explain that taking T3 would cause spikes and drops (too high/too low) throughout the day…in which case that small excess is probably great. I side on the checking each year or every 6 months. As well, I have become familiar with how too much feels to me (which is similar to how too little feels with a slight variation) so I can keep my doses in check.

          With all things there is a risk…and that includes T3 treatment. We each have to weigh them for ourselves. I know no way to have a consistent level throughout the day. I take it 10-12x a day. It is just one of the downsides of pills. I also tend to feel like our bodies compensate for that. I take an rx that is GABA (Baclofen) and it is pretty clear that my body knows when to expect it. I’d like to think it does the same with the thyroid.

          That is a good description…thanks for linking it. One thing that no one has explained, and you may also experience with the genetic work…is that it can seem like the body sometimes only can use what is freshly available (as like with B12) and that the storage amounts (ie B12) the body doesn’t seem to access as well. I find this with thyroid, at least for myself, as my dose and need keeps increasing over the years.

          There are issues with the description you linked…(referring to the D2 section) TSH is not regulated by T3 levels, it is regulated by the hypothalamus (which may be regulated by T3 levels). Also, if the pituitary was so easily thrown off, everyone’s bodies would be doomed. While it is true that doctors should not dose based on TSH…but this is not why. As well, it is making an odd chicken and egg argument…saying that being overweight/etc causes down regulation when indeed wonky hormones cause overweight/etc. Too little thyroid causes depression…not the other way around (unless depression is from other cause), antidepressants suppress thyroid (what makes thyroid-caused depression worse). TSH is not linked to conversion of T4 into T3…TSH instructs the thyroid to produce T4 and then carries the T4 into the bloodstream. Most of the rest seems ok. It is difficult to get exact information when studies or papers make wrong assumptions (ie Vit D studies using the wrong Vit D tests).

          It is a lot like the genetic stuff, causes the condition or is a result of the condition…all they can say for sure is that: low T3 occurs concurrent with this condition, not which caused which.

          Anyways, hope this helps. :)

          • Diane says

            Hi Faith –

            Thank you for your in-depth comment. I’ve been off line and will be again as I am doing some travel but wanted you to know I read and appreciated your input.

            Recently, I’d tried to up my cytomel and I could tell my body definitely didn’t like it due to symptoms. After reading your explanation and a few other things, I decided to go off t3 and see what happens.

            It’s so weird. Other than when I get too much in my body, I can’t tell any difference taking it or not taking it. I was taking it four times a day at a total of 37.5 mcg. At one time I was at 50mcg but a naturpath told me to lower it and I was feeling awful so listened.

            Anyhow, I believe inflammation is the culprit for me now. I’ve endured a ton of severe stress for the past twenty years. Much has been alleviated, at least for now. I’m finding tart cherry juice is being very helpful along with a lot of magnesium and P5P. That’s all I’m taking now but may need to add a tad of B12 in some form. I’m cmpd hetero and my B12 was lower than I’d like on my last test.

            I plan to do a good amount of testing in about a month to see what has happened in my body since changing everything. My energy is decent! My pain is much lessened! Now I’m hoping some of this weight will come off.

            Thanks again for all your helpful input.

            Take care,

            Diane

    • ivy says

      hello,

      so this is what i can confirm low inflamation comes from broken thyroid, i got the symptoms back when i reduced my therapy and my TSH went from 1 to 2.22 in 30 days….

      at the same time my old synus problems came back and signs of low inflamation that show up as enlarged lymph nodes…on my neck under armpits…and strange abdominal pain, like my all body went inflamed!

      so to sort these problems i am sure, becasue i sorted those one has to have TSH back to 1.5 or lower…(for normal patients who have this hipotalamus pituitary axis working)….or sort the thyroid hormon lvls ratio in the blood first, then those symptoms will go back

      from what i have concluded here, i used to have bad digestion before too, it sorted out big time when i started taking hormonal therapy! and from what i have seen people with really bad digestion who dont metabolize food at all_ like faith says food comes out untouched….this is special case and maybe those patients not doing well on t4 for the digestion reasons….dont know just did notice link between very bad digestion and thyroid problems even with taking hormons…

      also meet does not cause inflamation! its a myth…i can confrim that when i started eating more meet and fat my overall body inflamation DECREASED……

      from every signle person you can learn maximum 90% 10% of what each one of us say is probably VERY WRONG

      • Faith says

        Hi Ivy,

        I think it differs between people. I also think it can be hard to tell information apart some just compare red meat to fish…as opposed to meat verses vegetable. So careful sifting through the information out there is necessary.

        All vegetable diets lower inflammation suggesting that meat/starch diets increase it or keep it there. For what it is worth, I eat meat and I have inflammation…I also eat a lot of fruit. I know that if I have dairy products, I am in significantly more pain for 48 hours.

        That said, Chris here wrote an article about it with some interesting information: http://chriskresser.com/does-red-meat-cause-inflammation

        • ivy says

          hello Faith,

          oh the article is goo as all Chris articles are good becasue he makes fool portray of pro and con, from all angles

          but this is the issue: thyroid patients need to get enough protein in the body! and this can only be done via eating meat!
          now where is the problem?
          the problem is we eat the same kind of meat all the time!
          read the article about liver from Chris too :) our ancestors used to eat a lot more variety! and throw lean meat to the dogs, and eat only organ meat, like liver kidneys..skin….this is why dr ray peat suggests eating gelatine! casue you have better balance of different amino acids in those other parts!
          we twisted eating habbits and this is why the incidence of thyroid problem is rising on top of twisted living lyfstyle…

          this is what i know for myself! my thyroid got broken when i was not giving enough good nutrients to my body over long period of time!….and there is no way one can feel super energetic before fixing the whole package …slowly over time,it can take 2-5 years beeing on balanced thyroid hormons eting good food to fix energy issues! if nothing else broken….

          and many patients who are on t3 only just never hit good therapy they went like 100+25 or more and then concluded oh t4 not working so kick it out..and if t3 only is the remedy for its very short half life they should have felt great then immediately and this should have lasted…its know that one can feel good on t3 only for a limited amount of time up to 15 weeks

          and yes i would agree there are differences between people…some like more veggies , some more diary some more fish…its becasue of different environmnets we all live

        • ivy says

          you know for many things one needs just good logic, you can never go wrong if you eat ALL moderately!…and listen to what your body says this is the ultimate! eating is something that should be instinctive….
          i started feeling so much better when i kicked out white bread and started making a bread that is based on flax seeds with 6 eggs and cottage cheese, and added more protiens, and vegetables into my diet….the inflamation went down

          now the thing is they do hybrid seeds! you never know what they will invent that may become new source of inflamation in the body like that ATI protein in wheat! that is the real huge inflamatory molecule! and not gluten…its the most recent study you can look it up on sciencedirect or other page!

          thats why i am not really interested in kicking out any food group…one can spend a lifetime learning but i must eat as of today :)….and taking good protein is simply essential for anyone who has broken thyroid!

          • ivy says

            oh one more thing, you said you dont digest fat well?
            do you know the reason for that?

            usually people who are diabetic dont digest fat…..

            i noticed i love fats now more then sugars…and read that fat craving is symptomatic of hypo patients

            • Faith says

              Hi Ivy,

              I am not sure what this post is linked to or who you are addressing it to…so I might be off by chiming in if it wasn’t directed at me (my apologies).

              I have not found the cause of my digestion issues (yet). However, I have since encounted 10 people who also are no longer digesting many foods. One woman who is dying even after having had the fecal transplant.

              Fat digestion is done by an enzyme the pancreas makes.

              That said, I recently happened across a video of a pill camera in the stomach of someone who ate Ramen Noodles…not only did it say that after 36 hours (I am sort of suspect of that) the noodles still were not broken down. The interesting part was that they were connecting this to the preservative being used on the noodles. This led me to suspect (and I actually highly suspect it) that something being put on our food (maybe even just to clean it) is causing it not to be digested.

              It is very disconerting to me to hear so many people relating the same story regarding not-digesting. Recently saw a GI doctor who said straight off that they can’t do anything about the digestion. At this point I only minimally process bread (although I feel super yuk eating), necterines (that are no longer good/in season), and meats minimally (although don’t want to be eating. Romaine lettuce and pinapples are suppose to have natural digestive enzymes in them…and yet both come out untouched.

              Anyways…hope it answered your question.

              • ivy says

                hello Faith,

                oh i have come very quickly ahead of many things i did not know before.

                1st right move was finding good combination that put my ft4 to ft3 ratio in balance.

                I must disagree when you say many people have lowt3 syndrome.
                We have to dofferentiate 2 things: a ) do they take t4 or any other therapy b) is that low t3 , normal t4 and normal TSH what was found before they ever took any thyroid h.therapy

                this is crucial! becasue i dont agree many people have low t3 syndrome!
                most people have just thyroid issue. and they rarely end up online, and then there is this first problem, i had too

                where low t3 suddenly appears becasue of unbalanced thyroid hormon therapy i.e. going above physiological doses with t4 medication! my ft3 dropped immedately as i hit 100 mcg t4!! this is not a coincidence! since then it never recovered….

                so it can be just like i explained that body fights agains excess of t4 hormones…by reducing ft3 , producing more of rt3….to keep body from going too much hyper! and in that situation i was having symptoms of hyper: sweating, headaches….and symtoms of hypo :brain fogg,fatugue, sleeping problems

                these are 2 very improtant thigns to differentiate, so adding small amount of t3 to therapy can easily correct the low t3….when i added only 3 mcg to my t4 my ftr jumped from 3 to 4! it was 4.4 before i ever started medicating

                so telling that body doesnt need t4 and needs only t3 i would not agree, becasue WE DONT know….noone understands that issue so well to claim this….its like every cell in our body has its own logic, and having t4 is needed so many of those different parts can regulate t3 conversion as they like, also look how every cell in the body has 2 receptors:thyroid h and vitamin d hormons! and both of the 2 have the prohormon version and hormon version!

                there is too much unknown there so that anyone can claim we dont need t4 , ofcourse we do, becasue t3 sets the same pace for all cells in the body and maybe this is not how its supposed to be?

                yes i know hypotalamus is the master mind and pituitary is sort of manager, if hypotalamus is CEO :)…..i know this, i just saw that my TSH goes up when my total t4 went lower! body is trying hard to secure enough of t4…that is called energy storage prohormon..because t3 must kept constant….should not vary too much becasue of sensitive heart muscles..

                but then when you look thyroid, it secrets those 4-6 mcg of t3….all the other conversion goes in tissues…so what normal thyroid only patients should do is replicate what thyroid is secreting and not the total body production of t3 that is around 30 mcg t3 that i heard? but not sure of that info…never checked…if thats at all available or known fact?

                this is my understanding based on my hypothyroid experience! and i have been seriously hypo for over a decade before i realized i have broken thyroid….number one casue i think is malnutriton!
                digestion issues are very much connected to thyroid problems….since you said you can not take t4……i must tell you my digestion improved remarkably when i started taking t4 only!! in low doses…..it was very significant chnage…however low t3 makes personnot digest proetins well…..so only until i made good balance i digest proteins well now as well! and dont need betaine hcl supplements

  14. Mare says

    Thanks for explanation of all the T3s, except I mostly get low T3, not really low any of the others (total or free, etc).
    I did a corticostim test in which they inject you with cortisol and put you in an extremely stressful situation to see if your body can respond to the stress, and I responded above and beyond by making lots and lots of cortisone. So that means no pituitary problem.
    My endo is great and I have medicaid, so I can get more tests, but maybe, as you point out, there really is nothing they can do anyway, so they don’t bother.

  15. Diane says

    So, I’m wondering, is low body temperature an indication of low t3 or not? (IE the whole Broda Barnes scenario.) Since low t3 is not from an ill thyroid but a lack of conversion, will low body temperature have any bearing on if a person should seek treatment or not? In other words, will having low t3 cause low body temps?

    • Faith says

      Hi Diane,

      You ask is low body temps an indication of low T3 as in a causal effect, and no I do not believe that it is…however, the two things often happen together, although (I believe) are happening independently.

      To explain. When the body is sick, for whatever reason, the main hub, the hypothalamus (which controls both of these things), will change our body’s set points.

      Systemic low grade inflammation will cause the hypothalamus to set the body’s temp point lower…in the same way a bacterial infection or virus will cause it to set the body’s temp point higher (fever).

      The underlying condition causing the low grade inflammation (just being sick) will cause the hypothalamus (independently, through use of different chemicals) change the body’s set point for T3 lower. It is not that the body is not converting it well…just that the body is not wanting more, per the hypothalamus’s instruction.

      Both of these processes often occure together, although are happening seperately…and both are normal and natural and not in need of treatment (other than to treat the cause of the illness and underlying inflammation) as they will correct themselves on their own when the condition precident is removed.

      Hope that helps clarify.

      • Diane says

        Yes, very helpful Faith. And, interesting.
        I do have inflammation. My ferritin has been moderately elevated for at least a year. (250ish). It has been coming down (177 last check) as has a mildly elevated ALT. (mid 50’s and now normal at 22 last check.) But with what you’ve stated above, I wonder if Cynomel is the culprit, at least in part. I was quite ill Jan of 2013, I think it was EBV as I have high counts for an infection from sometime in the recent past. Huge fatigue and from blood work thought it was my thyroid, started Cynomel. I think I’ve started a vicious cycle here. I’m wondering if there is way to support the hypothalamus? Now I’m wondering about bone loss and my weight gain. UGH. I may need to wean off Cynomel.
        Question is, how does one ever determine the cause of inflammation? It could be just about anything.
        My ANA is normal. No Hashi’s.

        • Faith says

          Hi Diane,

          Interesting re the high iron. In my own labs they commented (my iron is normal) that it could be elevated due to anemia of chronic illness. Apparently, illness raises iron levels.

          It is often difficult to isolate what is causing what as it is usually due to complex interations. Oftentimes, the only or first odd labs we get are thyroid labs…so it makes sense to start treating it…when sometimes it is not the thyroid but something else.

          I’d still reccommend the book…and a look at your diet precceding each change on the off chance foods are triggering the flip flop.

          Hang in there, keep searching and you will eventually find your answers.

        • ivy says

          i dont believe there is something called hashi! its broken thyroid only…..nothing more, and you can get antibodies only when its in early stages, if you are in late stage of destruction there is no way antibodies will show up when all is destroyed allready….

          so what happens you take hormons but thyroid got broken becasue of somethign else!! and you built up vitamin mineral defficiencies over the years, you can mask a lot of it with hormones….but long term the overdose of hormons will start giving you new issues

          high ALT can be from too high t3!! yes my logic is staying close to physiological lvs in hormones is best approach..unless like Faith ….you have some special case…issue…which you may have but

          high doses of t3 and those are all above 5 mcg…….can be culprit…

          the same as taking 200mcg t4 its 2 x the physiological dose, taking 12 t3 is 2 x more…….it will mess with your t4 lvls…..t4 is good for something…..etc….unless you have some really good reason not to have it

          • ivy says

            since i wrote this i was reading some papers and now not sure anymore what physiological doses are….they may range from 4-10 mcg?

            so i would say taking more then 10 mcg of t3 is going way above physiological lvls

            would be nice that they finally say what are the physiological doses exactly of t3 is it 4-6 mcg or it is 6-10 mcg? anyone knows?

      • ivy says

        this is very nice explanation…..

        but in my case my low ft3 came becasue i was thrown out of balance by taking too much t4 meds! i was on 150 mcg t4…my symptoms would not go away on t4 only what i should have been given is tiny amount of t3 when t4 started not to work properly…and my tsh was around 1.4 this was achieved even on 75 mcg doses…..

        so above 100 mcg t4 there was very significant drop in my ft3

        this is caused by hyperconversion of excesses of t4 into rt3! this is what i learnt and fits in with my lab data…..its so clear that 100 mcg t4 was probelm for me and those days i remember i got all of the symptoms like sweating, hair loss, and feeling hyper!! but eventually my body accomodated to it!!

        amazing thing!

        so low ft3 number in people who take hormons can be produced only by excess of t4….in my graph this is so vividly shown

  16. Mare says

    About 10 years ago I started have issues with weight gain and feeling cold all the time. The cold is getting worse over time, the weight gain at this point seems to have leveled off at about 20 pound gain. Everyone I know has been bugging me constantly telling me I have a thyroid problem for many years. My TSH always is normal. I finally got some tests abroad (where I could afford them) and my T3 consisting turns out low are just at the low end of normal. I bought some cynomel on the internet and tried taking a tiny amount, but didn’t like the effects and quit. Still I am desperate to get warm. I tried the cynomel again this summer. I took approx .5 mcg two days in a row. The first day I felt warm. The second day I woke up at night with a terrible ringing in my ears, drenched in sweat, feeling just awful. At a certain point it felt like I was no longer inside the right half of my body (I kept touching it to make sure I could feel it to make sure I wasn’t have a stroke). I vowed I’d never touch cynomel again. Interestingly, over the next month or so I was generally warm, and sometimes hot. People thought I was having hot flashes. I also lost 10 pounds without trying to in any way, (this after 10 years of unsucessfully trying to lose weight). During this time of weight loss and heat, I had an appt with an endo doctor (I finally got on medicaid and could afford it). I really liked the doctor and mentioned that I felt like my thyroid had bounced back up (a similar thing had happened 4 years prior and I never understood why- this time I thought maybe it was the effect of the meds). He did many thousands of dollars of bloodwork which all turned out not just normal, but at the high end of normal. This did not surprise me given how I was feeling. Since then, in the past month or 2, I have gotten cold and started gaining the weight back. A more recent blood test still shows normal thyroid function. No one has tested my T3 since April because doctors consider it not important. Even when I ask for it and it is prescribed, the lab results give total T3 rather than T3. I asked the endo if it is the same thing and he said no. Since T3 doesn’t matter and all my other numbers are fine, I am considered fine. Yet I cannot go indoors in summer and cannot work because of the cold. Whatever was going on earlier in the summer, I want it back desperately. The doc said it could not have been the meds. I am negative for Hashimoto. What boosts my thyroid function and how do I get it to go back up again so I can feel well? I am desperate, so I am now putting a cynomel in my mouth every day and letting just a tiny bit dissolve. I have no adverse effects that I notice from this, but also am still cold. Why did it seemingly have a month-long effect before? Or what was it instead that boosted my thryoid function?

    • Faith says

      Hi Mare,

      I am so sorry that you are going through all this. Although I don’t have an answer as to what is causing this, I can shed some light that may help you further your search.

      Even though many people connect being cold and thyroid, it is in fact the hypothalamus that sets the body’s temp point. Even when we are sick, like with the flu, it is the hypothalamus that increases the body’s temp (fever) in order that e can make more white blood cells to fight it. I do know that inflammation will cause the hypothalamus to set the body’s core temp lower than normal. You did not mention if you have taken your temp when feeling cold all the time…if it is lower than normal, it is likely inflammation. The labs for that are C-Reactive Protien (CRP) and the SED Rate.

      Systemic inflammation, even low grade, ironically can happen from too much T3. Although, usually it is that whatever underlying issue that is causing the inflammation will also cause the body to, naturally, lower T3 levels. This looks like, in labs, as normal TSH, normal T4 and either low normal or low T3. This will likely not be helped by supplementing because the body (the hypothalamus) has set the body’s level of T3 lower so the body will work to sustain that low level.

      That said, taking T3, even when the body doesn’t want it…will become a problem if the liver is not clearing it like it should. Too high T3 can feel similar to too low and can even cause paradoxial weight gain…and, it can also cause bone loss.

      Although it sounds to me like the beginings of a possible autoimmune condition (non-thyroid) wherein the bad periods cause inflammation and thus low body temps as well as the flip hot times…before covering that, my suggestion would be to consider any differences in your diet the week or two before either of the shifts on the off chance that food may be the precurser to the issue.

      The main test for autoimmune is the ANA or FANA.

      There is a good book on both how to identify and also how to help yourself if autoimmune may be the underlying issue. And again, I don’t mean that it is anything outright…but more subtle and just in the begining stages causing just low grade systemic inflammation. The book is Why Do I Still Have Thyroid Symptoms When My Lab Results Are Normal? by a Dr. K. He discuses how to identify which side of your immune system it may be as well as the foods that may be behind it.

      Sorry I don’t have the answer, but hope any of this may help…I sure hope you find your answer.

      Faith

      • Mare says

        Thanks, I will look into the tests you mentioned. My body temperature is generally around 97.6, but it varies. I’m cold all the time, whether my body temp is low or not. Recently the tests that I had that turned out off were low MCHC, low MPV, low eosinophils, low basophils, high immature grans, high lymph absolute, high mono absolute, high immature grans abs. Since I had just finished a low-grade corticosteriod treatment for back pain, I assumed that is what affected those test results.
        Also, I am confused as to what the difference is between T3,, total T3, Free T3, and uptake of T3. It is my T3, and occasionally my total T3 that are low, not the others.
        Thanks!

        • Faith says

          Hi Mare,

          To help clear up the confusion re T3/TT3/FT3…in general, we make T4 (1 thyroid 4 iodine) the storage form of thyroid hormone…and we convert T4 into T3 (1 thyroid 3 iodine) which is what fits into the receptors cleaving the 3 iodine in the process. In order to preserve both T4 and T3 longer, they temporarily bind to carrier proteins…while bound to these proteins they are not-usable. TT4 and TT3 refers to a count of all bound and unbound T4 and T3. FT4 and FT3 refers to only a count of unbound and ready to use T4 and T3. However, I have yet to hear of anyone with an issue of too little or too much protein binding or protein binding being an issue. That said, to further compound the T3 issue, there is also RT3 or Reverse T3, which we normally make some of and is not-usable. When they do a TT3, they are also counting RT3. There is no test that just counts bound and unbound T3 without the RT3…so this is why doctors and patients prefer the FT3 test.

          The important thing to know is that just because someone may be low on FT3, they may have plenty protein bound T3 that the body can readily unbind and use at a moments notice…and thus the test can and often does give a very false impression of a person’s T3 level. In my opinion, it is best to draw a baseline of TT3, FT3, and RT3 in order to see what your particular body is doing. High RT3 will throw off TT3…but if RT3 is within normal range, then TT3 is a better way to see what your levels are. Although, you have low TT3 with normal T4 and TSH shows a true conversion issue…the question is why…as in, are you truly failing to convert or is your body converting less on purpose? One of the most common reasons that a body re-sets our set point is because we have some underlying illness going on…and in these cases, it is not a thyroid issue (as it will correct itself), but a side effect of being sick. And, in actuality, it is the hypothalamus that sets that base point.

          Running cold is a sign of hypothalamus involvement…whether from low grade systemic inflammation or other illness process. Like Chris suggests in this article (that we are posting under) the body just sort of does this when we are sick…and when the illness resolves, the weird settings clear up on their own.

          There is no known way to support the hypothalamus…however, all the standard advice on lowering body inflammation could help. Doctor’s do not treat hypothalamic issues…nor do they often test for it…I personally believe that they have no clue how to deal with it. No one on the internet (providers included, author of this article included) seem to break it down like this despite having learned this in medical school. If you want to pursue it, a cursory look at the Wiki’s on both the hypothalamus and pituitary will yield the relevant hormones that could be tested. I am told it is a stimulation test that only endocrine doctors can run…and that they don’t like running them.

          Hope that helps. :)

  17. Diane says

    Mark-

    Yes, snpedia, and also reading research studies like you mention above. There are several other snps that have been studied but the two I mentioned above seem to be the most important ones, so far. ( I tend to second guess myself, afraid I’m not determining the correct reading. Sometimes the ‘orientation’ of the snps are flipped and though I think I know how to read them I still wonder if I’m reading them correctly at times. )

    Thanks for the great tip on how to try and take the t3. That would make a lot of sense. I’m now wondering if the t3 has added to my inflammation? Also, I think I upped it too much, too quickly and I didn’t give my body time to adjust.
    = feeling crappy.

    Glad you figured out your snps!

    • Mark says

      I compiled an analysis of all five SNPs with supporting research documentation: https://app.box.com/s/vb2ck4vvfe13hoaer0wo

      Maybe you can glean some helpful info from it. So from your research, SNPs rs2235544 and rs11206244 are the most significant then? If so, then I can surmise the argument is that I sway more toward being a hyper-converter of T4 to T3.

      • Faith says

        Great research everyone and thanks for sharing.

        I don’t have much to add, other than to say feeling poorly on T3 is usally a sign you have too much…and that it can, eeriely, feel similar to having too little.

        As to what the genes mean, I would think that this is just a map of how your body converts…that said, if you were a super converter, you would have chronic low T4 because it is over converting it…similar to the Vitamin D Reversal Pattern where a person has chronically low storage D (25,D) and normal to high active D (1,25 D). The other signs of over-conversion would be low TSH.

        I think the pertinent point that is being missed is why some peoples body’s “set point” for T3 need is lower than the standard. The main reason there seems to be for this is some other underlying illness and that for all practical reasons the body (despite the low T3) is acting normally and doesn’t need to be messed with. Also demonstrated by when messed with (adding t4 or t3) it does worse. Sometimes, the body knows better than us. *shrugs*

        • Diane says

          I have to totally agree with you Faith. We often try and fix a ‘broken’ system in the body by taking and doing all manner of things. I’ve found supplements push the body chemistry, not always in the best direction. The human body is wonderfully created to fight for health, homeostasis. And, unless there is a disease process going on that it cannot overcome, often time is the best nutrient.

      • Diane says

        Mark- Thanks for the great document. I’m still checking and reading as time permits. I did read on a few studies the two snps I mentioned are the main ones. Although, I suppose another researcher could have a differing opinion. Thanks again for putting this all together. I downloaded it and will spend some more time researching it all. Also, I noticed the last article on thyroid and depression. I’ve definitely had that, especially when the winter days are so short. I’ve read more thyroid med is needed in the winter months and personally, I’d say I think this is true.

  18. Diane says

    Thanks for the post above, Faith. I’d been feeling tired and recently upped my t3 from 37.5mcg/day to 50mcg/day. Now, I’m feeling even worse. Maybe I need to take it the other direction. I would love to not take any thyroid.

    Chris, my question to you concerns the deiodinase enzyme snps. I am homozygous for rs2235544 A/A and rs11206244 T/T. From the bit of reading I’ve done, these are two of the main snps associated with fT4/fT3 conversion. In the past when tested I’m always on the low end of normal for fT3. Mid level for fT4. Does this necessarily mean that I am not able to convert well due to these polymorphisms? Looking back, I’ve dealt with ‘thyroid type’ symptoms since my mid-20’s. Early 60’s now.

    Although, from your article, I’m wondering if my problem might be more related to inflammation. Elevated ferritin with normal iron levels and elevated HSCRP. Sed rate normal. I have high markers for EBV virus, past infection. Might this be the culprit for my inflammation?

    Thanks, Diane

    • Gillian says

      Hi Diane,
      I’m also low or low normal on fT3 while mid-range for fT4. I tried taking a very low dose of T3 and felt much worse.
      In my case, I *think* the reason that I’m not converting T4 to T3 is that I have ferroportin-loss-of-function disease, the second most common type of genetic hemochromatosis (aka iron overload disorder.) Ferroportin LOF is characterized by high ferritin and low or normal transferrin saturation, with different tissue types getting overloaded than with regular HFE hemachromatosis. There’s a good summary on iron overload disorders from the NEJM posted here: http://www.trinity.edu/rblyston/documents/JAMPjanReading/Fleming2012.pdf
      Fleming RE, Ponka P. Iron overload in human disease. N Engl J Med. 2012 Jan 26;366(4):348-59.
      Inflammation does put up both CRP and ferritin – but if your ferritin is a lot higher than can be explained by your CRP, as you can see by the flow chart in the NEJM article, you might want to ask your doctor about ruling out ferroportin LOF disease. (The one upside of ferroportin disease is that it is treatable with bleeding to get rid of the extra iron, although people with ferroportin LOF often end up having to be bled less often so they don’t get anemic. Still, with patience and perseverance, we get “de-iron’ed” in the end!)
      Ferroportin disease isn’t that common, but it’s often missed because the transferrin saturation doesn’t go up until the ferritin is very, very high.
      Just in case this could be a helpful clue for you –
      Gillian

      • Diane says

        Gillian,
        Thank you for the response and input. Appreciate it. I have looked over my snps for possible HH but haven’t found that I have any snps, even heterozygous.
        I did find it good that my most recent blood work showed my ferritin levels lowering from mid 250’s to 177. But, even better my ALT enzyme had been in mid to upper 50’s for a year or more. This time, very normal at 22! So, I’m heading in the right direction. With normal iron TIBC, UBIC and % sat, I do think it’s inflammation that’s been causing the elevated numbers.
        Great that you were able to find out what was occurring with you. And, especially that it’s fixable!
        Thanks again….Diane

    • Mark says

      Diane – Wanted to commend you for making this discovery of your +/+ SNPs. I am glad I just happened to read this post in my inbox. I also use 23andMe raw data quite frequently. How did you pinpoint these specific deiodinase SNPs? Was it from somewhere you read or did you run search on SNPedia? In my case, I was mistaken all along, thinking (assuming) I had a conversion block when in fact I do not (I am -/-); in other words, I am a hyper-converter, therefore, the NDT and T3 I’ve been taking along may have been making me worse! This is further supported by the fact that the one time I trialed T4 only for a month, I converted just fine, my T4 dropped as did my rT3 which is what’s supposed to happen, and my TSH was <1.0 for the first time ever, and my FT3:RT3 ratio was 67, but I didn't stick with it because everything in the alternative community that I followed told me T4 is "evil" and I need to run back to T3! I would think T3 would be the remedy for you since you're an under-converter [yes, you have a problem converting based on the research – see risk allele "A"" http://www.snpedia.com/index.php/Rs2235544

      Strange why you felt worse. But maybe not, as speaking of inflammation, I was told by a well-respected doc some time back that T3 up-regulates immunity and can cause inflammation, especially if it is taken on an empty stomach (and 80% of our immune system is in our gut). His advice: take T3 with food since 95% of it is absorbed regardless. Perhaps that will help.

      • ivy says

        hello there,

        what is your ft4 to ft3 ratio in a blood?

        i think one can only look at that ratio before taking meds and target that sort of lvl later! my ratio was 3.4 before meds, when i started taking t4 it went to 4 and dropped below 4 and i was feeling great!…my doc nevertheless chased TSH and after 100mcg t4 i ended up dissbalanced! my ft4 to ft3 ratio in blood jumped to 5.5!! which is soo much worse then should be my TSH was regulated well dropped below 1

        that beeing said i think best is to keep it above 1 slightly 1.4 maybe….below 1 is maybe overdose…..

        so after taking 150mcg t 4 for a year and having low ft3 becasue of dissbalance i chnaged to 100+3 mcg and my brain fog lifted but after 3 weeks i felt hypo symptoms back and my TSH jumped from 1 to 2.22 in 30 days…
        i am trying 100+6 now, but from this lower dose 100+3 i got my lymph nodules inflamed….i hope this did not come from 3 mcgt 3 but becasue of TSH that moved to 2.22
        and y ft4 to ft3 ratio dropped to 4.5 which is good….and i aim for it to drop below 4! since my natural ratio was 3.4

  19. ivy says

    it is 13th day i am on combination therapy! taking 100mcg t4 +25mcg t3, i made a switch in 1 day from 150mcg t4, now not too sure if thats the perfect way to do it, but have learnt various things in the process….

    finally think i know where panick attacks come from, from drop in t3 lvls…body keeps t3 very stable….and on 11th day i took only 19mcg t3+ 75mcg t4 in the morning and was feeling sick all day long….

    i looked up my old lab test 2007-2009. and it shows how my ferritin was 6 and minimum was 30 :) so seeing ferritin in 2014 at 34 is not that bad thing ? :)…i was blaming it on low ferritin, that probably has something to do with conversion process from ft4 to ft3 since it stood better then when i was very low in ferritin…..but not so much worse as it got when i was on 150mcg t4

    but adding t3 in my body i realized that hormone plays important role for heart!, for mood and energy and brain fog…feeling tired has the most to do with heart not beeing at its best…..this is my feeling…..i.e. with low ft3 …and even the slightest chnage in ft3 hormone is able to trigger panick attack, that is designed instead of electro shock for heart….so hypo people use a lot their adrenals…instead of ft3!

    i also noticed when TSH drops , also does theconversion of t4 to t3 and that total body production of both hormons stands at around 100 mcg t4+ 30mcg t3…..which is 3.33 ratio…and before i was medicating hypothiroid my ratio stood at 3.41 i dont think this is coincidence only

    and when i reached 100mcg t4 intake in my boody(at 150 t4 tablets, since i absorbed probably 70% of it taking it immediately before clacium breakfast :) my TSH remained supressed below or at 1…and ft3 fell to low border of the range…….
    and i feel so sad now….casue not sure if this combination therapy will work for me, its creating me wolf hunger and if i dont eat exactly 5-6 hours after breakfast i get shaky and dizzy and like i will die out of hunger and that creats perfect situation for a panick attack …..but in general my mood was better, i was euphoric how energetic i was, but the last 2 days when i had panick attack due to messing around the dose….i got dissheartened…and today feelign tired all day long…really tired….my adrenals probably exhausted…..
    and why i messed around the therapy becasue i was afraid its too much too soon, and my heart is under too much effort since i had sensations around chest area and i started reading…..

    do you think i will be fine? and it was not that big deal to switch from 150t4 to 100+25 combo?…..

    one day i did sport and i noticed that exhausted me ..but i was energetic and could do it much easier then before, just that hungar is annoying…i dont eat overall much more..probably about the same?……but today i feel depressed…cause tired and its 13th day…2 days ago i messed the dose so this took me out of balance…today was managable but i am afraid now..and not relaxed..and thinking…and just so so tired…:(

    thank you!!! for lsitening and maybe some word of encouragment :))

    • Faith says

      Hi Ivy,

      Well I applaud you for trying things and keeping careful track of how you feel.

      The feeling shakey when you don’t eat IS adrenals…that is the one sure sign. Unlike everyone else, I feel better when I don’t eat.

      Too much T3 will make your heart beat funny…which could easily set off a panic attack. If I remember, you did not do well on T3??? If not, then you do not want to take a big dose all at once…it doesn’t act like T4…and the fact that you get the heart issue and panic suggests that your body is not clearing away the excess T3 that well. For what it is worth, I only take T3…but I have to take it 10-12 times a day. My body clears it really well.

      Both too much and too little T3 feels pretty much the same…tired, yuk feeling. The difference between the two, I have found, is too little makes you sad…and too much gives you the weird heart racing thing.

      Take heart, everyone is different in their need for thyroid hormone…and what works for one does not work for another. Keep trying things, eventually you will find what works best for you.

      Hang in there. :)

      • ivy says

        hello Faith, i am back with new info :)

        i read dr Blanchard book, this has been somehting like an eye opener for me….

        you know i have 16 data points from 16 measurments of my hormons through 3 years time….and i noticed my TSH moves up in the summer, i found explanation for this in the book…sor tof and i added my own explanation to it, it must be connected to vitamin D! …i remember all cells in the body have receptors for 2 things, vitamin D and thyroid!! this is not just coincidence

        and research showed much higher TSH seasonal variations in subclinical then euthyroid patients so i assume it can go as high as 1….

        so i set new target for myself i will target my winter TSH 1,4 so that summer goes to 2.4 like it did last summer

        i was on t4 only for 3 years but slightly increased to 150, where i spent 1 year this supressed my TSH to below 1, and symptom of low energy stay there

        so this is my big conclusion now: overdosing masks the underlying problem each of us have…i know malnutrition is great trigger to develop thyroid probelmS! and my ferritin beeing low i can not feel more energetic on the borderline ferritin :) so no matter how much hormons i throw in it wont do me good, and i was clearly overdosed on 150 t4! and then

        i took 100 t4 +25 t3!! oh boy this was one of the worst nightmares so far in my life!!!! i was having starvation hungar! that threw me into panick attacks! i was fighting for my life, eating like crazy!! and euphoria and disspair were swaping through the day my BP went to 140 over 80 and heart rate 74 always and 80 sometimes…..and my usual HR is 63!….and bloos pressur enever higher then 125…..

        then i dropped to 100+3 mcg t3 only it felt great , soo good for 3 weeks then i started noticing huge dropp in t4….i did not notice before …t4 is slow worker…so i upped to 135 10 days during my PMS ….now 100 for 2 days…i plan to keep that dr Blanchard approach cause i was amazed how many things he explained well in the book, and

        the most improtant take is t3 in very small doses lifted my brain fog!! and improved my mood!! i still have eneryg problems, am only like 35 days into it…..so too early to tell, and not perfect yet….becasue i think my thyroid supressed for some time now…and must start working again…..

        so i was getting old symptoms back , i hate it :) like lyphatic nodules becoming bigger, and synus sensitivity…but on the other hand PMS was nonexistant almost!! and no headaches and finally not feeling so crazy hungry! omg what a rollecoaster t3 is, 25 mcg t3 affected even my short term memory!! can you believe it?

  20. Faith says

    Hi Everyone,

    All the comments are running together in my mind (sorry about that), so I am just going to make a more blanket response here (hope you don’t mind).

    Yes, it can be very difficult to get doctors to see the logic in things, I think we are all in the same situation with that.

    I think it is great that we are all reading and trying things, even if we later find out those things don’t work. I try to post what I learn about things because so many of those things are costly and a lot of people do not have the money to waste on what doesn’t work.

    I don’t know what to say about the iron issue…I am very chronically hypo, but my all my various iron levels are fine. The B12 issue, I believe, is a whole different story that I don’t believe anyon has gotten to the point of even formulating the question of why is it that people who are struggling with their health do soooo much better on B12? For me it seems like a breakdown in my ability to use my stores of it…since my levels are also fine.

    The research is hopelessly behind, in my opinion…because all the B12 work is on the autoimmune and digestive issues of not having enough “intrinsic factor” to process it from food…but I test fine on those tests too. When I take B12, I am fine for about 4 hours and then I need more. Why is this? I have no idea. It also helps my kids and my mom. Nothing I have seen in all the cycles (like the methyl cycle) points to the process by which we process and use B12 so I have no idea.

    I agree, I think we all know what will work for us…I honor that part of people that knows this stuff.

    Regarding Vit D…sunlight is my best choice. Back before I researched it, I got Borage Oil (from a plant) and Flax Seed Oil…I think for Vit D, deffinitely for the essential fats. There is a really great video on YouTube about mixing Falx Seed Oil, Flax Seeds, and Cottage Cheese…the Budwig Protocal. This mixture renders the fat water soluable. I was intrigued by this because I don’t digest fats well. The Cottage Cheese they mention is really very sour…if you like sour, go for it. I ended up having to use regular Cottage Cheese, because the other was just too sour for me. With the regular Cottage Cheese, it could be a replacement for cream cheese on a bagel or something. In the end, I just cannot do dairy products so I had to stop.

    This is a great group of people. :)

  21. ivy says

    was searching through the web yesterday, and reading researches on the ferritin , b12 and folate and iron metabolism…..

    there is one hormone that is called hepcidin, it is in the liver, and it regulates complete metabolism of the iron, i noticed many hypo people have problem with low iron and/or b12! and this puzzles me why this is not addressed together? (some studies on mices showed that combined therapy of iron +t4 gave better results then taking just on or the other on treating iron lvls)

    It seems that body doesnt want to absorb iron from the food if there is low grade chronic inflamation going on…and that kind of inflamation can be caused by exercising…..and i remember i was always active even though my body was depleted with everything (so body with hypo people can register walking as exercising too if its more then it can do??)….

    iron is directly correlated to oxidative metabolism, which is again affected by hypothrioid condition….so probably body concludes there is no reason to uptake more iron if the oxidative metabolism will just make the body weaker….becasue not sufficient hormones to keep it going??

    this is just my theory…but bottom line is…..when one finds hypo problem should check ferritin level and prescribe both things together, if ferritin is not improving this means thyroid hormones are not balanced enough??

    this was my case at least, my ferritin could never improve….

    so curious to see if on better therapy after 1-2 years my iron gets fixed …….my serum b12 is good, did not measure folate (since i think there may be false rsults).
    Also not enough copper, zink can influence iron absorption..but i watch my diet for the last 6 years….was bombing myself with iron rich food :)…eat bluebrrries every single day now :) meat etc…so it my feleing the body doesnt want to absorb more! :), i tried with more stomach acid too, but to na avail……iron is absorbed in duodenum 1-2mg per day only and that same amount is wasted every day too

    if anyone has any other clue….t3 may be the missing link, becasue i was on t4 therapy only…so my ferriting tells my thyroid therapy maybe not ok my latest feritin lab was 30( 30-300 is lab range :) maximum i saw is 34 in me

  22. ivy says

    Dear Gilian thank you so much for your effort, appreciate it.this is great community here very informative, but
    I dont believe in h.pylory…its something so prevalent in the population, but low ferritin and hypo go so well together, my serum b12 is high, so if it was for pylory i would be low in b12 too, i think it has something to do with metabolism, and they did not investigate it yet, they dont know what function ferritin has, thats what i read today……

    Helicobacter, i read may even have some postive effect in our bodies! It so ething co pletely new, i put it into same category as gut bacteria, something thats not been researched at all, and not used in healing at all, h.p. can cause problems in some people i know thta, i have read many things, and no way i would be taking 2 antibiotics and proton pump inhibnitor that makes me sick person,to get h.p. next time i go for a coffee:-)

    I do take a lot of calcium, eat lots of milk products, but dont drink coffee , tea:-) …and was supplementing iron for years..but was never on proper thyroid medication, i did notice that my ferritin dropps immediately if i dont supplement for 1.5 months….and it is connected to low ft3 lvls and hair losss……so i was thinking there is something to it……am very curious if on this new balanced therapy that includes100t4+ 25 t3 i will maybe move that ferritin for the first time in 15 years up:-) ….then i will know its closely connected to thyroid…..

    But i am so so surprised that they did not establish explanation between low ferritin, low b12 and hypothiroidism…..

    Yes i just learnt today how those trace elements must all be inbalance i never supplemented anything beside iron, so this may well created some imbalances but i doubt it can be so that i prevented me from creating more ferritin…..

    Have no idea, but i never had any stomach problems in my life……i did develop hypochloridia …which i did not know, but every summer i would be feeling like vommiting for a month……even on t4 only it improved! Now 5 days taking combined and i think t3 is of great help there…and i will turn that metabolism higher……..

    Yes like faith said..maybe its in my genese something that prevents me from creating more ferritin..but i dont know what could help there….i did notice i have higher bilirubin in my blood , but slightly, they told me i have gilbert syndrome, so i become a bit yellowish if i fast…nothingnserious about it 5 of people have it…but this is some liver, blood, metabolism connection, i feel is not investigated at all??

    So little of really good infor tion found…did you ever find the research on t4 to t3 ratio? Some topics are deliberately avoided i think, and its only about money, its also not in docs interwt to fix us with one tablet so we wont be cpming for more checkups!!! My doc was so trying hard to put me off from combined therapy and i insisted on pure logic:-) …….just freakin amazing, i wish i could take him to court…..but in my country how could i explain that i was misstreated when not even in the USA you can prove misstreatment with t4 only

  23. Gillian says

    Oops, forgot to mention that besides reducing iron absorption, H. pylori infection of the stomach can also reduce absorption of B12 and some other vitamins –

    http://www.ncbi.nlm.nih.gov/pubmed/22105725
    Minerva Gastroenterol Dietol. 2011 Dec;57(4):369-77.
    Nutritional aspects of Helicobacter pylori infection.
    Vitale G1, Barbaro F, Ianiro G, Cesario V, Gasbarrini G, Franceschi F, Gasbarrini A.
    1Internal Medicine Department, Catholic University of the Sacred Heart, Gemelli Hospital, Rome, Italy. [email protected]
    Abstract
    H. pylori is a gram-negative pathogen, etiologically associated with atrophic and non-atrophic gastritis, peptic ulcer, primary gastric B-cell lymphoma and gastric carcinoma. Several observations demonstrated a correlation between H. pylori and malabsorption of essential nutrients; epidemiological studies have shown an association between H. pylori infection and iron deficiency anemia, while the absorption of some vitamins such as vitamin B12, vitamin A, vitamin C, folic acid and Vitamin E may be affected by the infection. The main mechanism related to malabsorption of this components is the modified intragastric pH (hypo – achlorhydria) due to H. pylori infection. Moreover H. pylori is also able to determine a modification of gastrointestinal hormones by reducing plasma levels of ghrelin and increasing those of leptin and gastrin, thus affecting appetite and promoting the occurrence of dyspeptic symptoms. On the other hand, H. pylori eradication has been shown to improve serum level of iron and vitamin B12, has some effects on Vitamin A and Vitamin E absorption and has a late effects on ghrelin levels. As a consequence of those effects, H. pylori is also associated with childhood malnutrition in developing countries either for the occurrence of malabsorption or for an increased susceptibility to enteric infections caused by hypochlorhydria.

  24. ivy says

    and one question for you faith pls

    regarding glutathoine……since i started having grey hair in my 30s , rather earely i read this may be a sign of some problem with that glutathoine….

    what do you supplement for that problem?…..
    is l glutamine doing anything helpful to it?

    and what do you think of ashwaganda, i am confused since i have hashi and some say its great thing and on one powder i bought it says WARNING its not for hypothiorid people…..

    thank you very much! i love reading from you

    • Hélène says

      Milk thistle has glutathoine in it, I think it may be why it’s a great liver herb. I take it in an extract as I think the powders/pill/tablets arent as effective.
      Ashwaganda stimulates the adrenals. If you’re wired and tired already this will make you worse. You have to get rid of the stress, emotional but also BODY stress—inflammation, illnesses etc and then heal the adrenals.

      • ivy says

        hello Helene,

        thank you very much!!

        BUT i dont know why then they mention this ashwaganda everywhere around hashimoto issues..i bought it :(( so another money spent for no reason uff….

        i am starting to believe its the liver that needs some support not just the gut, everyone is so much obsessing with gut, becasue it looks like a black box….and i remember when i did not know anything , and read no books intuitively i thought i may have some liver problem, becasue i had chronic synus problems, and i heard from one holistic doc who is very very good, he is fixing knees, that synus problems point to liver problem…and i was taking some herbs in form of tablets for synus, when i read up active ingredients of those pills, they were all good for the liver!! and these pills helped me significantly for my synus problems (this was no 1 pills in germany for synus problems, Synupret forte)

        • Hélène says

          DrBerg.com is an ND who explains alot of this kind of talk. He’s where I learned about ashwangda. He tried to dispel alot of the common misconceptions adn confusions about health out there. LOTS of free info on his site. He’s in Virginia in the USA.

      • ivy says

        amazing before i read anything i was thinking to take that thing for my liver that milk thistle, then someone told me i dont need it :)…..i think we all know intuitively what we may need!……i connected my liver to my synus problems, and basically i think liver is really essential and so far noone put that much importance to it, all are just focusing on gut, and gut permeability which i think is stretched idea…i dont believe this is source of autoimune disease…..but rather consequence, that by beeing ill you become more sensitive to certain foods……ofcourse eating healthy is crucial, just me going gluten free , did nothing for better conversion from t4 to t3 :) it may even made it worse :)….becasue i was eating more protein, fats…….i do follow the same diet now and is nice! but only becasue i fixed my hormonal therapy am taking close to that ideal ratio of 3.5 :) taking 100mcg t4+ 25 mcg t3

    • Faith says

      Hi Ivy,

      Gray hair, esp early, is generally a sign of copper def.

      Regarding glutathione…and L-Glutamine…

      .-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.

      Glutamine makes Glutamate…which turns activity on. Eventually, Glutamate makes GABA, which turns activity off. I make way too much Glutamate (why my tissues tighten up) and not enough GABA. How it works is this:

      A.1. Glutamate + the enzyme L-Glutamic Acid Decarboxylase = GABA

      B.1.a. GABA + the enzyme 4-AminoButyrate Transaminase (along with active B6) = Succinate Semialdehyde
      B.1.b. Succinate Semialdehyde + the enzyme Succinate Semialdehyde Dehydrogenase (via the Citric Acid Cycle) = the enzyme Glutamate Synthase
      B.1.c. Glutamate Synthase then makes Glutamate

      And the cycle continues ad infinitum.

      .-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.

      On the other hand, how we make Glutathione is this:

      In short, Cysteine (which is what they would give you to help you make Glutathione, only mine is already high) makes Taurine and Glutathione (both low in me). How it does so is this:

      1. Cysteine (mine is high) + Glutamate (mine is also high) via the enzyme y-GlutamlCysteine Synthetase = y-GlutamlCysteine
      2. y-GlutamlCysteine + the enzyme Glutathion Synetase = Glutathione

      As I mentioned, they give you Cysteine to help make Glutathione…and due to my issues, this is where I have to accept that there are so many more processes involved than even the experts understand…Cysteine would make me sick, as would more Glutamate…my body is clearly trying very hard to make Glutathione. This is why it appears blind to just tell people to take something for something when they don’t understand the process involved.

      .-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.

      Since Cysteine (mine high) also makes Taurine (mine low)… I clearly have a breakdown in those enzymes. Whether that is genetic (if so, they don’t know which genes (yet)), or some other reason…like my body slowly breaking itself down due to my being sick, it is hard to say. It is equally hard to say whether taking Taurine (and/or Glutathione if we could) would solve my health issues, or merely cover a deeper process going on.

      I am a firm believer in finding out the actual process things work by, and not just taking what someone who made a website or wrote a book said, because when you can understand the process…things just become visible that were not before…and the path to our health, if it exists, also becomes visable…like, for me, taking taurine. Nowhere in my defects (so very little is known about them anyways) would it suggest that I would not make taurine or glutathione…and yet, labs show that I am not…for me, I put my trust more in the labs that trending notions. That is not to say I didn’t try, I did…just that it wasn’t it.

      Hope that helps. :)

      • ivy says

        oh thank you very much!!! ,

        i did notice recently i can not stop eating dark chocolate i know it is rich in copper…..

        i have good vitamin b12 in my blood, and yet i am not sure if that is good or not, maybe its only in the blood….and not beeing used properly, so me supplementing b12 i did not feel anything, usually when something is really defficiant helpful i notice it for the 1st tablet…….

        i can totaly understand how these docs make wrong conclusions…..it doesnt surprise me at all….

        in a way if you ask me i think they know too little!! and this surprises me so so soooo much, that i can not understand where they spend years and years of learning, some things were obvious to me in few months after started reading……i am especially pissed at study who made t4 beeing recommended as 1st therapy

        thank you very much for this explanation of the process, which is part of methylation process…i never took time to investigate it….just went on to try everything other people recommend :) so i bought myself that powder lol, and i was resisting a long time to it…and then i do sports so it may help me some, but since i was on t4 my muscles did grow somewhat…so am not that very sick person…..but still i know now its all about chemistry and that metabolic process that is in the core of life………

        thank you very much dear Faith!

      • Hélène says

        The thing is paying for these labs is cost-prohibitive. You don’t want to know the convoluted way I went to prove my T3 was horribly low. My doctor was then basically forced to give me the cytomel, which the ins had to pay for due to the lab documentation. She would have never tested for it though–just the T4.
        Labs would be nice. Most ppl just have to research, guess and try. The selenium actually seems to be helping me. But I’ll just have to see.

        • ivy says

          hello Helene, tell me about it :)

          i came with 2 charts to my doc, which i am paying extra, so private insurance(although i have right to national insurance), to ask to give me combined therapy t4+t3, i just followed the logic, before i started medication with t4 only i was having 3.5 ratio of ft4 to ft3 in my blood, 3 years after that ratio jumped to 6, becaue my ft3 went lower then it was without medications…….in a way i lost faith in those docs, i think they are severely undereducated, and just lack too much logic.

          it is beyond me that recommended therapy for hypo people is t4 only! and they dont check ft3 at all

      • ivy says

        oh it just dawned on me….i was supplementing iron for years without any pause, so this may lead to my copper defficiency? i know i am eating cashew for years, and i eat all bag in 2 days….recently noticed i love dark chocolate……

        i could never get such an advice from doctor, and why i can not build up my ferritin no clue to that, and many hypo people suffer with either low ferritin or low b12…but nowhere did i find my case persistent low ferritin despite iron supplements…..maybe i was missing copper in the equasion….and docs told me just about vitamin c , b complex to take with iron

        copper, iron , zink they all have some part in glutathione production, and i read today what you all probably know that taurine is put into energy drinks!…that taurine has many beneficial effects! i think i notice it in that supplement i take there is 200mg of it in it gives energy!

        • Gillian says

          Hi Ivy,

          H. pylori infection of the stomach can cause low iron (which will result in ferritin being low when there isn’t any inflammation) even though someone is taking iron (see a couple of links and article abstracts on H pylori vs. iron deficiency at the end.)

          Iron absorption will also be reduced when iron-containing foods (or supplements) are taken with things like calcium, zinc, magnesium, copper, tea, coffee, etc. (There’s a nice discussion at http://www.parentingscience.com/iron-absorption.html that might be helpful.)

          Taking too much zinc can also cause copper deficiency, as noted in this handout from the UK http://www.patient.co.uk/doctor/zinc-deficiency-excess-and-supplementation . It works the other way, too – e.g., from http://web.mit.edu/athletics/sportsmedicine/wcrminerals.html : “High intakes of calcium, iron and copper may also limit zinc absorption.”

          And here are the H. pylori vs. iron deficiency article abstracts, in case they are helpful –

          http://www.ncbi.nlm.nih.gov/pubmed/23316928
          Helicobacter. 2013 Jun;18(3):222-8. Epub 2013 Jan 15.
          The effect of Helicobacter pylori infection on iron stores and iron deficiency in urban Alaska Native adults.
          Miernyk K1, Bruden D, Zanis C, McMahon B, Sacco F, Hennessy T, Parkinson A, Bruce M.
          Abstract
          BACKGROUND: Helicobacter pylori (H. pylori) infection has been correlated with low serum ferritin and iron deficiency. As a secondary analysis of a study of H. pylori reinfection, we investigated the association of H. pylori infection and the effect of its eradication on serum ferritin and iron deficiency.
          METHODS: Alaska Native adults undergoing esophagogastroduodenoscopy had sera collected and a (13) C urea breath test (UBT) was performed. Those H. pylori positive were treated with an antibiotic regimen; those who tested negative 2 months after treatment were evaluated at 4, 6, 12, and 24 months by UBT and serum ferritin with an immunoradiometric assay. We excluded persons from further analysis if they were prescribed iron by their provider.
          RESULTS: We measured serum ferritin for 241 persons; 121/241 were H. pylori positive. The geometric mean ferritin (GMF) for persons with and without H. pylori infection was 37 μg/L and 50 μg/L, respectively (p = .04). At enrollment, 19/121 H. pylori-positive persons had iron deficiency compared with 8/120 H. pylori negative (p = .02). Among 66 persons tested at 24 months, the GMF was higher at 24 months (49.6 μg/L) versus enrollment (36.5 μg/L; p = .02). Six of 11 persons with iron deficiency at enrollment no longer had iron deficiency and had a higher GMF (p = .02) 24 months after treatment.
          CONCLUSIONS: H. pylori infection was correlated with lower serum ferritin and iron deficiency. After H. pylori eradication, serum ferritin increased and approximately half of persons resolved their iron deficiency. Testing for H. pylori infection and subsequent treatment of those positive could be considered in persons with unexplained iron deficiency.

          http://www.ncbi.nlm.nih.gov/pubmed/20201716
          Scand J Gastroenterol. 2010 Jun;45(6):665-76.
          Iron deficiency anemia in Helicobacter pylori infection: meta-analysis of randomized controlled trials.
          Yuan W1, Li Yumin, Yang Kehu, Ma Bin, Guan Quanlin, Wang D, Yang L.
          Abstract
          BACKGROUND: Helicobacter pylori (H. pylori) infection and iron deficiency anemia are prevalent in disadvantaged populations worldwide. The benefit of H. pylori eradiation for iron deficiency anemia has been extensively studied, but data are still equivocal.
          METHODS: A search in The Cochrane Library, PUBMED, EMBASE, EBM Review databases, Science Citation Index Expanded, and CMB (Chinese Biomedical Literature Database) was performed. Randomized controlled trials (RCTs) comparing anti-H. pylori plus oral iron to oral iron alone for the iron deficiency patients in whom H. pylori was positive were selected for meta-analysis. Reviev Manager 5.0 software was used for the performance of meta-analysis.
          RESULTS: Sixteen randomized controlled trials totaling 956 patients were included. The meta-analysis showed that the difference from baseline to endpoint of hemoglobin (Hb), serum iron (SI), and serum ferritin (SF) was statistically significantly different between anti-H. pylori treatment plus oral iron and oral iron alone (SMD, Hb 1.48; 95% CI, 0.96, 2.00; p < 0.00001; SI 1.15; 95% CI, 0.87, 1.43; p < 0.00001; SF 1.84; 95% CI, 1.20, 2.48; p < 0.00001, respectively).
          CONCLUSIONS: Our study suggests that treatment of H. pylori infection could be effective in improving anemia and iron statue in IDA patients infected by H. pylori, particularly in patients with moderate or severe anemia.

  25. Hélène says

    Just chiming in with my experience. Tried cytomel for 6 mos. Did NOTHING. Tried it again 6 mos later. This time tried for a year. Did NOTHING. Used 10 mcg. Tried using 15mcg but got palpitations. At the end was down to 5mcg a day as my numbers were “normal”. Well honey, they ain’t In Range for MY BODY. Then I had my levels tested again about 6 mos later when all T3 out of my system…my RT3 is 21 and my T3 is 2.2? Isn’t that a horrible ratio?
    Would love to try the Wilson’s protocol but have no money to pay for it.
    Am trying all sorts of diet modification for about 6 mos now but nothing works. Havent lost a pound in almost 3 mos now.

    • Faith says

      Hi Hélène,

      Thanks for sharing your experience. You sound like you have been doing some research. My two bits is this, and I am sorry if it comes off poorly, but the ratio notion is purely made up. However, I don’t want to just say that without telling you why.

      As someone who has an RT3 issue, and by that I mean that whenever I am on T4 (I don’t have a thyroid), my RT3 levels skyrocket. I have never been on T4 longer than 6 months, however, my RT3 levels have been upwards of 180 points over range. At about 100 points over range I start collapsing, I assume from being so hypo. So my doctors have me on T3 only. In trying to solve my own issue, I have learned a few things along the way…namely, the way the thyroid system works…and, in doing that, also inadvertantly learned what stuff out there is bs and why.

      For starters, the body normally makes RT3…and it is normal to have some. There is no ideal ratio…nor any way to change it as the body makes it according to its needs. For example, if you are exposed to a cold or flu…or if you didn’t eat breakfast before labs, your RT3 levels will be higher (normal, but still a higher normal). Throughout the day your RT3 levels fluctuate.

      The role of RT3 is to regulate metabolism…and, in general, to slow it…whereas T3 speeds it…so they work together.

      The ratio notion hinges (incorrectly) on a false assumption that adrenals and thyroid are connected, when, in fact, they are not…or rather, they are not in the way that they porport. The thyroid system is seperate from the adrenal system…other than from their comand centers, the hypothalamus and pituitary that commands them both. However, they are commanded 100% by completely different chemicals that the body makes. IF, for some reason, a person had issues with both (and this is where I am disappointed with practioners who do the ratio bs), then you have an issue with your pituitary or hypothalamus…and, if they went to medical school, they should know this. If you follow the Wiki’s from the hypothalamus down to pituitary, to thyroid and/or adrenals…you will see that they are seperate independent systems. I am sorry that they lied to you.

      Also, RT3 is made 100% in the liver. Nowhere on their sites do they mention this or even seem to know this…other than maybe they have read me in the last 5 years trying to correct them.

      The ONLY time anyone needs to worry about RT3 is if their level is over the range and they have persistent hypo sysmptoms despite normal T3 & T4 levels.

      T3 is not a feel good medicine…nor will it help anyone lose weight (unless they are truly low due to non conversion)…and it has the side effect of making one’s bones demineralize. The ONLY reason one should consider trying it (besides an RT3 issue), is if they have nornmal T4 and low T3. That said, if their T3 stays low…then it is NOT due to not converting enough and likely due (as the liver is sweeping it on the instruction of the hypothalamus which sets the levels) to being sick or not eating enough…in which case, the only course is to fix the sickness and/or eat more.

      That is my two cents…I am sorry that you are having issues, and sorry that it still frustrates me that the misinformation on the web is keeping nice people chasing their tails. The surest cure for the misinformation is to figure out how the system works from start to finish.

      Hope that helps, and I sure hope you find some answers.

      • Hélène says

        Yeah, I went to college for nursing and then again for massage therapy so I have had a lot of physiology, myology and even nutrition as I’m headed for my bach in nutrition and culinary arts. Plus the decades of self study I’ve undertaken becuz I’m really into nutrition and cooking, let alone alternative healthcare.
        I’ve never heard the notion the RT3/T3 ratio is not important or just made up. Of course, it fluctuates but I’ve really just paying attention to it as I’m investigating ANY avenue to see what’s up with my body (and it’s not just up becuz I’m almost 50, I’ve been sick since I was at least 25, probably longer—I’ve had PCOS at least that long).
        I have come to believe that the adrenals and thyroid are co-dependent, if only in the fact the thyroid isn’t usually even the problem. It’s the adrenals underlying that; affecting the thyroid due to the adrenal dysfunction. HOWEVER the adrenals are often underlain by the GUT and its dysfunctioning. This is where I am focusing now. T3 is made in the gut also. 20% of it–a significant amount!
        Feedback loops all affect each other too. The body all runs as a whole. Once one thing is off, a lot more goes with it. In massage we learned (and phyisologists hate this & argue it) that fascia out of shape in one part of the body can affect somewhere totally different…cause pain and dysfunction. This is so true in many aspects of the body.
        I have definite hypo symptoms with “in range” T4 and low T3 (once it was 42 and 100 was the lowest normal range number!) I eat plenty lol I am dealing with chronic inflammation of several decades in duration.
        Thanx for your reply. I shall keep on keeping on in my quest for resolution!

        • Faith says

          Hi Hélène,

          Like you, I too am ever interested in nutrition and how the body works…and more so due to also being sick. For me, only 6 years, however, it has been a disabling 6 years and I very much want my life back. Being sick, I have come to find many others who are also sick with things that the medical profession do not seem to know what to do about. And, also probably like you, believe that diet and nutrition can play a big part in how we feel…as well as recovery.

          I have come to believe that MANY people have issues with either their hypothalamus or pituitary that are undiagnosed, and thus subsequently untreated…this is the only biological explaination for issues with both. Other than, a slow shut down of both (as well as other biological functions) due to underlying illness. If you study the biochemical compounds that the hypothalamus and pituitary respond to, then you will see that they are independent of each other in regards to all the different glands they control.

          I am a firm believer in going back and figuring out how all the various things actually work…because often, then, the cure or fix becomes readily visable…but that is just me.

          One thing I did, which started an amazing trail of discovery, is genetic testing. You may have heard a bit in your research about MTHFR et al. It goes into the genes that code the making of enzymes, which then control how we make and unmake nutrients and chemicals out body needs. I found this very interesting as we only need to eat a small fraction of what we need to make…and, I wasn’t getting well with nutrition (currently, most foods I eat come out untouched). So it goes into heady things like the methyl cycle and all the other various cycles.

          The premise is that you take what you would make after a defect. So, for instance, if you had a defect in the MTHFR gene with codes the enzyme with the same acronym…which adds a methyl group onto folate, you would simply take methyl-folate. However, umpteen of these supplements my doctor gave me made me much worse…so, I looked further…and this is where I began having my own ah ha.

          What I did was to take my genetic reports and list all the things it said were afftected and have my doctor test those things to see what, if anything, was actually being affected. My premise, IF a person has a double defect in MTHFR…then either they would be dead by middle age…OR…something else (that they don’t know about yet) is adding a methyl group onto folate.

          This panel, which was rather simple, lead to more answers than I have ever found in 5 years of being sick. I found out that I was not making taurine (the supplement of which brought back my strength and saved me from needing a wheelchair), nor do I make glutathione well…yet have high amounts of cycteine (which makes those two things)…and why my liver was getting so sick from the antibiotics they had me on…the removal of which has led to my increasing health.

          I also found out that I was not making adrenaline or GABA. No cure or fix (yet) for the adrenaline issue, but the rx Baclofen has gone a long way in relieving the stiffness that had my body curled up.

          Many people who are sick are very smart people…only some of those people have the money to buy all the supplements that so-called “experts” say we should take…and then only to find that they didn’t really work…or worse, made them worse. What I learned by my study of the methyl cycle et al, is that even what we believe to be healthy food (ie greens), can make certain people very very sick (ie those with MTHFR defects)…as can supplements. The genetic testing is one way to personalize supplementation. But again, how the experts do it…and the logic I applied to it still has a gap between. That said, I am many many times better than before discovering all that. My belief, we are all just trying to find answers…I try to share what I have found esp as far as what I have found different from others.

          The RT3 thing…just goes down to understanding how it works. As I say, I have a huge issue with RT3…I take T3 only (as I have no thyroid), and look forward to the day when my health is under control enough that I can go back to T4. I ache for those who are sick and struggling, and hurt for the practioners (well meaning as they are) who read the internet and what people want and just give it to them sans their medical knowledge…like those who give T3 to every tired person or to help people lose weight…or just give Armor and/or iodine to those with thyroid autoimmune…they do it with stunning fregency, because someone who wanted to make a name for themselves on the internet said it was good on a website…and they want to sell what people want to buy so they throw their own knowledge to the side…as these things do in fact make people very sick. The RT3 ration thing was made up by a person who is not a doctor, or even a nurse…and yet are practicing medicine in a yahoo email group..to the point of telling a person on T3 to ignore her heart palps, she had a heart attack following their advice and nearly died. Hence why I always advocate to educate yourself on how the actual system works step by step (medical books, not the internet) and apply heavy doses of logic and reason.

          I have no issues saying something different than what the crowd is saying…been that way my whole life…and found that there is about a five year turn around time until what I am saying becomes common knowledge. Those thyroid sites are NOW, five years later, finally starting to connect liver and T4 to T3 conversion. I cant control the world, nor do I care to, but I can share what I have learned…and that I do. Whatever helps, I am glad…however much you disbelieve, that is fine…if you keep searching you will eventually come to what I have found.

          Best wishes on your journey back to health. :)

          • ivy says

            hello Faith,

            ever since i heard about methylation, i thought its the bottom line of how one should feel in his life, energetic or low energy, it makes sense, but they say 50% of total population has some deffect on those genes…..and the environment triggers genes to switch on and off, i am firm believer of that one too……the lifestyle can determine if someone will become seriously ill person, and one that functions “normally”—

            i was diagnosed hashi 3 years ago, when i was put on t4 only i immediately started feeling better, i felt my thermostat finally works, i was no longer feeling cold!, still i was not tolerating summer heats so effectively as i thought i will…..
            my lab tests showed both my hormones ft4 and ft3 went higher and this correlated with my feel good….then my doc started increasing t4, and i did not know why becasue at a time i had “nough” of benefits on that dose i was taking….when we went to 100 mcg i satrted having same old issues, hair fall, feeling tired, and having hot flashes….so nothing was working ……but i could not go back becasue on lower doses i would be tired the same as i was before…….my lab test showed my ft3 decresed on that does below normal range!

            now 3 years later i did a chart of my hormones, and saw that my ft4/ft3 ratio was 3.5 before i started taking t4 hormon!…….this funnily enough corresponds to good combined therapy ratio of t4/t3……….after taking 100mcg that ratio jumped to 5.5…..my doc responded to that giving me even more t4…..i did not read anything at a time….i ended up at 6! so my ft4 was 6 times more present in my blood then ft3! obvious sign of not converting well…..

            now many hypothiroid patients have low ferritin …this is protein in the liver and it was low when i started medicating when t4 did work for me…..but what i noticed adding too much of t4 indeed stopped conversion of t4 to t3 with me! it must therefore be that excesses of t4 is blocking proper conversion..becasue this happened 1 year after taking t4…then the body stabilized somewhat again, and then….i chnaged my diet to more fats/protein, to stabilise my sugar….and either coincidence or not…my t3 showed up again the lowest ever, below the range….

            now i started taking combined therapy 100mcg of t4 +25 mcg of t3…..and i feel huge improvement! i am not there 100%

            i do think that t4 monotherapy is just not good for seriously hypothirodi people, like i was! and that right therapy must keep ft4/ft3 ratio around 3.5!…..and i dont get it why it all got so complicated in the process???

            and why do you think reverse t3 is not of any value?

            when i started supplemeting betaine hcl + pepsine witch is said to improve methylation in the liver and kidneys only….my brain fog lifted!! it was AHA moment for me…..i di dnot feel like that since my teenage….but after 5 weeks that magic stopped working!!…..

            after all my experience i started to believe that something like reverse T3 exists…..becasue i did notice how doses above 75mcg of t4 did start to make me worse, my hair started falling out….

            and yes look for signs about bad methylation, but 50% of people would develop some metabolic issue…and i guess genes are not perfect with anyone…and still they dont develope thyroid disease, …its part of living we can not be perfect, but i think we CAN find a way to treat it to feel better, and i think combined therapy t4 and t3 must be standard for hypothiroid treatment! and not just t4!
            t4 helped me only not to feel cold, and nothing else so much!…..

            my anti stress supplement has taurine too, and when i drink it i feel better, my mom too! so i think not only you but many people would benefit from taurine!…….

            can you pls tell me what suppelemts are the most safe in your oppinion? are larger doses of b complex safe to take?
            i am as well very wary of what to supplement, i treid d3 becasue i am slightly below low range, and after 2 weeks of taking 3000 i.j. i developed mole sensitivity!! my moles started like bruning…inflamed…..then i thought to myself omg is this a connection between sun , vitamin d and melanoma?
            i stopped supplementing……

            i spent huge amounts of money on supplements none ever worked, recently i am trying to buy only products contaning b complex and a little bit of this and that….becasue i notice they help me..magnesium was very beneficial! was huge discovery for me

            and i think beeing hypothiroid for 15 years must casue mineral vitamin deficiency in the body

            and the gut bacteria….i think they also influence a lot what minerals and vitamins we will be deficient in…..its 80% of our immune system this is real hard core biochemistry whats going on there…..its researched on mices…..if you share diabetes 2 gut flora with new mice it will develope the same disease!!

            looking forward to your answer on reverse t3…thank you

            • Hélène says

              If you think you may have MTHR, etc. take the methylated folate and B12. I do and i eat TONS of greens and sufficient animal products also. I take the methylfolate as its inexpensive on vitacost.com. The methylB12 I need to order still. Im already taking 20mg zinc, 200mg selenium and some iron (till my ferritin steadys out).
              But then again I take kelp for trace minerals and the iodine so you mite not agree with that.

              • Faith says

                You should test your selenium first, symptoms of too much are the same as too little.

                For years they thought that was my issue, but supping keep making me sick…come to find out, years later, mine is at the top of range.

            • Faith says

              Hi Ivy,

              To clear up any misunderstanding, I think RT3 is of great value…what I view as useless is the “ratio” idea that someone (not a doctor) dreamed up.

              They removed my thyroid because it was large and had multiple nodules, they did not test me for thyroid autoimmune beforehand. I was put in T4, like everyone else is, and became worse and worse. By this time I had read a little, enough to ask for RT3 testing…mine was over 100 points over range and I was collapsing. My doctor at the time increased my T4 dose even though my TSH, FT4, and FT3 were fine…I got much worse, new doctor revealed my RT3 was now over 180 points over the range…she put me on T3 only, which I do well on.

              Like you, when I heard about the methylation stuff I was excited…thought it could explain and fix everything…until all those suggestions, from my beloved doctor, also made me much worse. It was then that I asked my doctor to run labs on all the things my reports said should be affected…again, my logic was that if someone, for instance, had a double defect in MTHFR…then they would either be dead by middle age…or…some other gene/enzyme adds a methyl group onto folate. Lo and behold, my labs revealed nothing any of the experts ever go on about…my taurine was very low, and I wasn’t making adrenaline. Both of these are in the methyl cycle…but are not associated (by the experts) with my particular defects. I have concluded that there is more that they don’t know on the subject than what they do know…and even though I think, if they applied more logic to it that it could help more people…they are not going down that path (yet).

              Because everything they keep dreaming up to give me keeps making me worse, I have (personally) come to the conclusion that NO supplements are inherently safe…and, for myself, now…after years of trial and error…I take only those things I test low in. For me, that is taurine and the rx baclofen which is GABA that actually crosses the bbb. These two things have helped me the most. All my tissues were tightened up, my body was curling in on itself…the baclofen helped 95% with that. Before the taurine I was growing weaker and weaker, I was very close to needing a wheelchair and I did use a walker…after taurine I grew stronger and stronger.

              I would no longer recommend people listen blindly to the hypothesis of taking whatever comes after a defect (ie methylfolate for a MTHFR defect)…instead, I strongly encourage people to do the lab work and see what, if anything, is truly affected.

              That said, take what works…with the open mind of if it ever doesn’t work stop for a while.

              The heat sensitivity is common in autoimmune.

              The true test for Vitamin D is the 1,25 D…not the 25,D that they run…that is only a precursor, many who are sick (like you with the autoimmune) will test low on the 25,D…but will probably test fine or high on the 1,25 D…the only usable D. I think of the 25,D like T4 and the 1,25 D like T3.

              Hope that helps. :)

              • ivy says

                hello Faith,

                thank you for your explanation here, i think we agree on every point, yes i first came here and read some of your discussion with one person and also started to think d3 is like t4 :) and people recommend taking that d3 like its a candy :)….

                i was trying to follow the advice tested only 25 one and tried supplementing, after 10 days or so i noticed all moles on my body are hypersensitive, not all at the same time but sporadically! i tested it 2 times, so i gave my d3 to my mom, she has osteoporosis so it may help to her……, as she was taking some prescribed by a doctor(yes i agree medicine knows far less then what they dont know so i dont trust ANYONE 100% anymore…..just see more value in talking to patients like myself, then docs :)
                yes ideally i would go on and test myslef, the problem is there are no such tests here in my country, and i dont know what tests would be best for me…..

                i noticed taking that formula with taurine def helps ! and my mother confirmed it too, she asked me what pill was it :)
                i was supplementing with b complex all in several times higher doses then recommended, i did notice some energy lift….but nothing longer term significant for me, i.e. i dont see difference if i dont take it, and i take it before sleep because it calms me down :)

                selenium i tried! 2 days 200mcg and i felt awful, just not for me, i felt exactly like i did not take my thyroid hormones for that day…so it makes me feel worse, so that i dont want to try it again

                so 2 most recommended things vitamin d3 and selenium not working for me…..

                i think many hypothiroid patients have low ferritin, and i have it for years. i.e. i first noticed it when i think my thyroid problems started…and i think this would be crucial to understand the link between ferritin and hypohiroid and liver

                i totaly agree with you that people missuse rT3…and luckily i did not fall into the trap, i did notice in my body that when you take more t4 then your liver can convert to t3 it starts producing rT3…..and that it can make you feel worse….and before i start taking any medicine my ft4 to ft3 ratio was 3.5…..i read some studies who confirm this ratio found in normal people, thats what make me think this should be targte when medicating! i was taking t4 only for 3 years and this ratio gone slowly to 6! body was trying to bring it down but slowly it just shot up to 6 …and this was correlating with my sense of energy…..
                so i would recommend taking combined therapy in ratio 3.5 or lower to target that 3.5 ratio in the blood, i am no doctor, but this is what i concluded based on my own experience…..

                on supplementing i was never firm believer on it, but once i tried betaine hcl + pepsine, this was such a difference that i started thinking these supplements can make a difference :) now i think 1st is good thyroid therapy…and supplements only where it makes a difference, and this is what i learnt after i bought too many of them :))
                i bought l glutamine, and just read yesterday this does not helps glutathione :)…some say it does some say it does not :)

                thank you very much for your answer!!! its really helpful

                • Hélène says

                  One thing with the D3…I usually would not take the selenium even but eat, say, Brazil nuts daily instead. However a endo who has Hashi says she doesn’t think it works for Hashi ppl–its didnt for her; needs the supplement. So I’m doing that supplement but may switch to Brazil nuts in a few months.
                  With the D3, I would take fermented cod liver oil ONLY. It has Vit A in it also, along with of course, ur O-3s and O-6s. It’s a food more than anything. I don’t work for nor have any affiliation with Green Pastures, but that is the only brand I would take. I don’t take any D3 currently as I just cannot afford theirs. The others are a waste of money IMO.
                  How much longer I take the folate IDK either. I see no difference and am just finishing my supply at this point in case it needs awhile to kick in lol.

      • ivy says

        oh i would comment on this—–i absolutely disagree that taking t3 is not remedy for people, and only t4 is….

        i think since too little is known the logic principle would be most prudent to follow, and that is taking t4+t3 in a ratio found in the blood of normal people which is 3.5 ……..and thats the safest way to go….

        i know how taking t4 only can make people feel, in the end….having low energy…and disstorting the normal 3.5 ratio……so you end up at 6 or so which is huge difference…the excesses of t4 can make people sick, stop the metabolism……as well, like any supplement you take in a excess is producing the same result as wehn there is too little of it!!
        this is all ABOUT BALANCE! fine tuning, for too little knowledge medicine has its no wonder …..

        but how on earth anyone came to idea that only t4 is remedy and not t3 as well …is beyond me! and beyond any logic!

  26. Jackie says

    I am 56 …. I was diagnosised with hatichmono disease at 21 years of age. At 17 years of age I was diagnosised with elevated white blood cells … but no known caused.

    At 19 I had a baby; had an emerengcy C-section due to placenta priva (sp??) then at 21 and 2 weeks I had my 2nd child C-sections .. no complications.

    Soon after the birth of my 2nd child I dropped her twice during a mid night feeding as I fell fast asleep – passed out type. My husband prodded me to see a dr. I was then diagnosised with hatichmono disease.

    I had issues with the para thyroid also; and it was impartive to reduce the goiter size. I had nucular treatment.

    I was then put on Synthroid; I swear I was exhausted … from kids or illness for 5 years! Finally it seemed I had balance.

    Until I was 17 I was full of energy … I never walked … I ran everywhere. I was very athletic and I was busy.

    Then I got married had children and became the laziest person you ever met. I had many traditional side affects, but not really weight gain. After one year I lost all my baby weight for both pregnancies. I could never decided if being lazey became such a habit that when I felt better I still did not have the same gumption.

    Some place around 5 to 7 years I recovered. I felt good again.

    Symptoms … I was cold, dry hair, skin and I cried. I have always been known as a crier even as a child. But I really cried over everything.

    Once I was stablized (5-7 years) I really felt well. During the next years I worked out at the gym regularly … 10 years ago I ran a marathon. Then I stopped all my work outs. I didn’t think I wanted to … I told myself I should go to the gym … I just quit. And then I started to gain weight. Menapause? No exercise? LOTS of stress at work!!

    Now at 56 I have my yearly blood test, and my TSH is a whopping 42.48!!!!! norm – .4-4.2 (I believe or close) so you see how out of wack TSH was. Then T4 normal, T3 -3.5 … so my doctor put me on Cytomel along with my synthroid.

    I feel so much better. But why did this happen? I want to learn and understand what happened to me that TSH went crazy or that T4 stopped converting to T3? Why???

    Any help out there is appreciated.

    Jackie

    • Faith says

      Hi Jackie,

      Sorry that you have experienced so many ups and downs. For me, the crying is a sure sign of too-low thyroid…as the symptoms of too much and too little, beyond that, are identical (for me), including weight gain. With Hashi’s you likely go hyper- and hypo-…so it will be helpful to you to discern the differences with how you feel with each.

      The TSH is the pituitary’s request for more thyroid hormone…when it is high like that, it really wants more. The question is, why? Esp if your hormone levels were fine.

      That you feel better on T3 is a big tell about what might be going on, and why you might have had the high TSH. Until recently, the medical world (and much of the thyroid world) believed that TSH only responded to T4, but this is not so…and it responds to T3 just as well. I don’t know how much you know, so forgive me if I explain things you already understand.

      T4 is the storage form and is not usable…T3 is what we convert T4 to and the only one we can use. There are reasons that the body will convert less T3…one is some underlying illness, another is starvation…and the body will generally down-regulate (make less T3) whenever the body is compromised. One thing to check, if this is the issue, is what is known as Reverse T3 or RT3. If this is high, and by that I mean over the range, then RT3 will dock in the thyroid receptors preventing usable T3 from getting in…one reason for being hypo when blood tests are normal.

      Another thing that competes with the thyroid receptors is Vitamin D. If you take Vitamin D, you may experience hypo symptoms even though your thyroid hormones are normal. Many people (falsely) believe that they are low Vit D because doctors test the wrong thing (25,D), they should be testing the 1,25 D.

      I hope that gives you a place to start, please keep asking. :)

  27. says

    Hello,
    I’m currently on Levothyroxin 50 mcg, 1 tablet morning and
    Armour thyroid 30 MG, 1 tablet morning and still having trouble with my T3’s being too low. In the past we have increase the armor and decreased levothyroxin but than I go hyper. I did have stressed induced cardiomyopathy last june leaving me with heart failure, which i’ve recover from. At that time I was hyper. I just keep swinging back and forth and am currently at a low. My doctor doesn’t want to increase me anymore so I’l stuck here. interesting point you made, I have a high CPR level and been there for many years. Don’t know what the cause of it is.

    • Faith says

      Hi Mary,

      I am sorry that you are experiencing so many health issues. You sound, to me, like you have thyroid autoimmune issues which, unfortunately, I don’t know all that much about. However, there is a really great book on the subject that you might find interesting.

      Why Do I Still Have Thyroid Symptoms? by Dr. Datis Kharrazian
      http://www.amazon.com/Still-Thyroid-Symptoms-Tests-Normal/dp/0985690402

      I am admittedly clueless why that particular combination…other than maybe to suppress your thyroid from producing. That said, IF you have thyroid autoimmune, the Armour would make it worse because it contains the things your immune system would be attacking, which may account for why you get hyper when you increase it.

      CRP is C-Reactive Protein…it is elevated when you have inflammation…which would also be consistent with autoimmune issues.

      At some point they estimated that 80% of thyroid patients are thyroid autoimmune…so if you haven’t been officially diagnosed with it, you may want to get a consult. The two main things that the immune system attacks are TPO or Thyroid Peroxidase…which is the enzyme that “digests” iodine and renders it bioavailable. The other is TG or Thyroglobulin which is a protein that binds the now bioavailable iodine on the back of a thyroid hormone. Both of these are present in desiccated thyroid products. If you have thyroid autoimmune you will want to avoid natural or desiccated thyroid and iodine as they both will stimulate attacks.

      Normal TSH, normal T4, and low T3 is usually a sign of an underlying issue. To be clear, barring actual liver failure or disease, this pattern is a result of the body determining to have less T3. The main reason it does this is because one is ill…and this includes low-grade, chronic illnesses that may even be so low-grade that the person doesn’t even realize they are sick. As Chris states in the article, this fixes itself when the illness is cleared up…and is also the main reason doctors don’t worry about it or treat it.

      That said, you may consider stopping the Armour (increasing the Levothyroxin) and possibly adding Cytomel which is T3…and see if that doesn’t improve things. That said, if you still have a thyroid, I personally would be concerned taking thyroid hormone…but again, I don’t know much about the treatment of autoimmune thyroid or whatever point or purpose they have for doing so…other than to maybe shut down the thyroid and thus overcome the immune attacks. I don’t know why more doctors and practitioners don’t realize, or warn you, against Armour/desiccated thyroid…but suspect that many follow the desires of patients to the peril of their health (sell em what they want). No one with autoimmune thyroid issues should ever have desiccated thyroid ever. Yes, yes, some will claim they feel better on it…but I deeply suspect that this is because it contains other things they need. Anyways, that is my two cents…hope it helps.

  28. ivy says

    so one has to find what chronic deasease one has to maybe help convert t4 to t3, and i know only of hashimoto that i have…..i may have other issues, my only worry is my memory loss, and brain fogs and beeing tired all the time will make me dementious when i am 60…..which is too early, i would like to be old and have good brain….so this is what i am trying to fix, what must one do and eat to be heatly old person…have seen demetia and its disgusting, and more and more people have it, and nowdays people do not live longer then they used to live in 19th or 18th century! its a lie….the graveyard is full of 90 year olds from 19th century in my country…..
    have a feeling these all autoimune diseases are coming from bad quality of food….and maybe too much stress?…like living a life of a perfectionist…..i think this all si so unnatural…could it be the main cause just the stress?
    i still think its the food too, beeing off the gluten took away so many problems i had and total level of inflamation decreased becasue i no longer have such PMS , its reduced 80% the only thing that is not good around pms now is headache which i think is related to progesteron, but doing exercises on those day help treat it without taking tablets….its just not convinient while working…..so must wait for the end of working time to get exercise so i dont end up with strong headache like migrene…so this is new stuff, so i connect it with aging, but am sure there are things one could do to solve those issues, i just wish i know which one are those?

    it seems like thyroid issues are actually many many various issues and its like fixing a car, each car is different, but the problem to me is, that dont even recognize parts of that engine and what they do individually….let alone how to fix it

    • Faith says

      Yes, I agree, more people are sick now than they used to be. It is hard to know the exact reason why, and I tend to think it is everything mixed together.

      Although more people now have issues with gluten, in times of old when people ground their bread from whole wheatberries (more gluten), there was not this issue.

      One thing you did not mention is vaccines. Vaccines are comprised of partial viruses and bacteria…meaning incomplete, just a part of. Not only that, but they bypass the immune trigger system by being injected. They have found that many of these partial viruses and bacteria live on in the gut…and may, I think, contribute to food sensitivities.

      They also cause problems in other ways by injecting the body with mercury and aluminum in ways that the body is less able to get rid of them (the body is more able if they come through the gut).

      This is one thing that is new…and seems to correlate with the increased amounts of sick people.

      The other thing you did not mention, is that certain things can change our DNA…turning things on or off…and then, this DNA gets handed down. In my own situation, my parents were pretty well…I am sick in middle age…all four of my kids are sick, two since babies, one at 10, the other since teens…all with the same symtoms.

      Unfortunately, and I say this with all due compassion to the medical community, the medical industry is forced to operate about 20 years behind the knowledge that is out there. Also, depending on the doctor, people are likely misdiagnosed for a long time before they are properly diagnosed and treated…

      Or, as is more often the case, many are just sick for years before any doctor figures it out. I think many thyroid patients fall into that catagory…they are sick with something else and the only abnormal lab they have so far is too low T3…so they research thyroid to a great degree, when it probably wasn’t the thyroid at all…and only the normal body response to being sick.

      Also to blame is the really weird (makes no sense) way doctors test things. For example, in a standard check up, doctors test liver death numbers…not liver function numbers (so they could actually help someone before they got sick). Or, they only test T4…or only test TSH…and not the actual T3. If they could just design tests to screen for things that might actually lead to results that would help them help their patients before people get so sick.

      Anyways, just wanted to add those things. And yes, the idea is that when the illness is fixed, the thyroid will correct itself.

      <3

  29. Crysta says

    I am 21 years old and almost 5 years ago, I was diagnosed with Graves’ disease. I underwent the radioactive iodine treatment and had my thyroid ablated. I was put on the generic levothyroxine, got bloodwork done every few months but my levels and dosage were always changing. I changed doctors, she recommended I go on Sythroid. So I switched, continued getting bloodwork and for a while everything seemed okay but recently it’s been changing again like it had before. Within the almost 5 years, I had an appendectomy and also had a cyst on an ovary removed. I eat very healthily, work out and get plenty of rest. I continue to have problems with exhaustion, weight, hair loss, mood, the whole nine yards of everything. For the most part I am diligent about taking my medicine but sometimes things happen and I’ll forget for a few days and that seems to always throw me off to extremes. My primary dr has done multiple general blood tests and everything she says is perfect. Is there anything I can bring up to my doctors that could help? Or is there an alternative process to take my synthroid that would help me forget less or just another medicine in general? Thanks

    • Honora says

      Don’t know if this will help with remembering to take your synthroid but I read a link somewhere that said taking it in the evening can be pharmakinetically beneficial. So I switched to taking mine in the evening as waking up to take it on an empty stomach when camping in the winter in a tent is very unpleasant, trying to track down the tablets as there’s no pocket in the tent, tracking down the water bottle in the crowded little tent or realising I haven’t set it up the night before etc. etc.

      Also I was having to wake up half an hour before I was served breakfast in bed, so this was disrupting my sleep at home. Now I get the extra half hour…nice.

    • Faith says

      Hi Crysta,

      Sorry about your Graves Disease and other issues. A few things come to mind that may help you.

      One is that when I was on T4 (synthroid or generic), I took it at night right before going to sleep. Not only did that help me remember it, like Honora mentioned, I felt yukky after taking it and so taking it at night helped.

      You don’t need to worry too much about forgetting once or twice because T4 stays in your system 6 weeks or longer. T4 is the storage form of thyroid hormone and your body need to convert it into T3 to be used.

      As to your numbers going up and down…well part of that is that your needs fluctuate…and there is nothing you can do about that.

      The other thing that may be affecting you, and I know it affected me a lot when I was on T4, is that certain foods interfer with thyroid. Your snythroid should even say in the insert to avoid soy and walnuts. Soy is in pretty much everything from all the breads on the market (except Ezekele’s 7 Sprouted Grain), fruit flavored tea, gum, and chocolate, and pretty much everything processed…it is very difficult to avoid.

      In addition to that, veggies in the broccoli family including kale and cabbage also affect it. Many people argue the point, but I noticed a huge difference in when I had them and when I didn’t…very hypo when I had them as though I hadn’t taken the thyroid at all.

      You can do a search on “goitergens” and find a number of lists. This may help you a lot.

      The only other medicine is T3, doctors don’t like to give it…it only stays in your system a couple of days so forgetting it can have huge consequences…and you have to take it multiple times a day. I take mine 10x a day.

      Hope that helps.

    • Peggy Pearl says

      Buy a one week pill dose pack at any drug store or dollar store. Put out one week’s worth of medication in the individual compartments. Put the dose pack on your nightstand along with a glass of water. First thing in the morning, take it and make sure you wait at least half an hour before eating or drinking anything other than clear liquids. If you forget, you’ll see the tablet in the day’s compartment, in which case, you take it immediately unless it’s almost time for the next day’s dose. You’ll know if you forgot your daily dose and how many you are forgetting to take.

  30. Audrey Toll says

    I am on Thyroid from a compounding pharmacy. I take 2.5mg daily. My blood work came back with a very high T4 and very low T3. I am concerned and cannot find a physician who can explain this. I’m wondering if I should stop taking this.

    Thanks.

    • Faith says

      Hi Audrey,

      Most doctors cannot explain this as it is (still) outside their current “standard of practice.” The current industry “standard” says that for low TSH (the pituitary’s request) or for low T4 (the storage hormone) to supplement thyroid hormone.

      As far as understanding how all this works together, to understand what your numbers mean, you need to understand how the body operates. If the body has a need for additional thyroid hormone, the hypothalamus (a gland within our heads) will signal its desire for more… to which the pituitary (another small gland connected to the hypothalamus) will release additional TSH to tell the thyroid to make and release more T4. The body (primarily the liver) then converts the T4 into usable T3. The main question is, why are you not converting enough T4 into T3?

      There are a few reasons this could be. One is that you don’t, in fact, need more. Some bodies operate just fine on less…and just because the industry has a standard “norm,” your personal norm could be less. A huge tell in if you need more is if your TSH is over the range…if not, you probably don’t need any more.

      Another reason can be that you are not making enough of the enzymes to convert T4 into T3. I do not know of any test for this and doubt that one exists. There are also no known treatments to help with this that I know about…and since most people who advice on the thyroid fail to understand that most conversion takes place in the liver, they don’t even seem to include advice in supporting one’s liver.

      However, the main reason that people have normal to high T4 and low T3 is some underlying illness. When the body is sick it naturally down-regulates itself…and although doctors know all about it happening in hospital settings, they do not treat it because it naturally resolves itself when one is well. The challenge comes in when one has a chronic illness. The author of this article is only asking the question of whether or not it should be treated (it is currently not-treated).

      One thing you may wish to have tested is RT3. When the body has too much T4 it will often convert it into unusable RT3 or Reverse T3. Again, this is a self regulating matter and the body does this normally. It will do it when you are sick and if you exercise too much or fail to eat enough nutrition. Again, it will correct the matter on its own when the condition causing it to do so is resolved…again, the problem comes in when it is something that is not going to resolve, like chronic illness.

      In general, you seem like a candidate for T3 only treatment…however, this again is outside the “standard of care” for the industry and finding a doctor who will rx it for you can prove quite a challenge.

      In my opinion, you do not need to worry about the high T4 as it is just a storage form and not usable in itself…however, I would not take any extra T4 if it was me. It also kind of highlights that your liver is not doing its job sweeping the excess hormone from your blood stream…this could be because your liver is being taxed in other ways, like you may be one of those people who eat little bits throughout the day or eats before bed…the liver also has to deal with what we eat and thus has to suspend hormone balancing in order to do so. Just a thought.

      Hope that helps explain it some. Best of luck.

  31. Mary says

    I have low FT3 (2.20), low FT4 (.66), and low TSH (.343). I have been on Armour Thyroid 90 mg. Seems if I increase it, I get shaky. My adrenal gland is in the Maladapted Phase II. My cortisol is above range in the mornings and in the low range after the late afternoon. My ND has increased my iodine dosage to 57 mg. to try to help my thyroid (with Tri-Quench). However, I am afraid of such a high dosage. I do have Lyme Disease. Does anyone know if high dosages of iodine help or are safe?

    • Faith says

      Hi Mary,

      The low T4 and T3 is disconcerting, however, the low TSH is more telling. Your TSH (pituitary’s request for thyroid hormone) is low…suggesting that, for whatever reason, your body does NOT want any more thyroid hormone. The question is why?

      One thought, is that the normal ranges that they give may not be your normal. Maybe your body operates just fine on less thyroid??? That is one possibility.

      You did not mention if you still have a thyroid or not. Iodine is only useful if you have a thyroid…and then only useful if you are not making enough thyroid due to no other reason than lack of iodine.

      Many practioners do not understand iodine and thyroid…in industrialized countries lack of iodine is extremely rare and then only if you live on a farm and drink well water def in iodine and eat only the food from the farm (no meats) that is watered with iodine def water. The thyroid sucks up all the iodine you eat…and “digests” it for lack of a better term the enzyme Thyroid Peroxidase or TPO is what turns the iodine you take or eat into something you can use. Th ethyroid then stores it. The iodine your body uses, the ONLY iodine your body uses, is what comes off the thyroid hormone.

      To better understand that, T4 = 1 thyroid hormone and 4 bioavailable iodine molecules. The liver then liberates 1 bioavailable iodine to make T3, which = 1 thyroid hormone and 3 bioavailable iodine…which are then liberated when the thyroid molecule docks in the thyroid receptor.

      There is (or there should be) a huge caution in giving people iodine. Most thyroid patients (like 80%) have thyroid autoimmune issues. Iodine causes the thyroid to make TPO which is the main target of attack in thyroid autoimmune…hence why they test TPO Ab. The other target of attack is Thyroglobulin, or TG…this is the protein that bind iodine onto the back of a thyroid molecule…hence the TG Ab tests. Taking iodine massively stimulates the production or TPO and TG thus causing an immune attack. You did not mention if your practioner tested your TPO Ab and TG Ab prior to giving you iodine, but he or she should have…and if not, you should request this as this could be causing your problem as your body may be turning down production in an effort to slow the attack.

      Also, there is a huge misunderstanding re adrenals and thyroid connection…the only place that they are connected are the hypothalamus and pituitary who instructs both of them. The thyroid hormones and adrenal hormones do not talk to one another nor stimulate one another. My suspicion is that many thyroid patients in fact have hypothalamus/pituitary issues and not true thyroid issues…and your labs sound a lot like that because otherwise why would your TSH be low?

      The hypothalamus is what determines what your hormone levels should be…and for the thyroid it issues Thyrtropin Releasing Hormone or TRH which signals the pituitary to release Thyroid Stimulating Hormone or TSH…which then the thyroid responds to by creating and releasing T4.

      In the same way, the hypothalamus determines the amount of adrenal hormones you should have and issues Corticotropin Releasing Hormone or CRH which signals the pituitary to release Andrenocorticotropic Hormone or ACTH which then causes the adrenal gland to release Corticosteroids…one of which is Cortisol.

      The testing they do to determine if you have a pituitary/hypothalamus issue are stimulation tests and they are done by endocrinologists.

      On the subject of thyroid autoimmune, Dessicated Thyroid like Armour, also contains the things that the immune system attacks.

      Autoimmune thyroid attack can leave you going up and down hypo-hyper and make you feel very sick.

      You did not mention hypothyroid symptoms…if none, your body may just need lower levels. Having Lyme, it is very difficult to discern the differnce between Lyme symptoms and hypo symptoms as they can be the same. As can hyper symptoms be the same as hypo…and can have paradoxial weight gain rather than the usual loss.

      You also did not mention having your RT3 levels checked, you may want to do that. When the body is sick, it will often convert T4 into RT3 rather than T3 and may account for your low T3 levels.

      Another thought, you may be making enough T4 and just simply converting it fast…low T4 by itself is not an issue as you have some. T4 is not usable, it is just the storage stuff waiting to be converted to be able to use…the low T3 is the main issue…and again, bearing in mind that your body does not seem to want any more (low TSH).

      Lastly, if you still have a thyroid and are taking thyroid…your thyroid will naturally make less.

      My advice would be to check your RT3 and then maybe consier taking very small doses of T3. If your T3 improves, and you don’t feel shakey, then conversion is the issue. The only way to bypass RT3 conversion is to take T3 only.

      I suspect your RT3 will be high due to having Lyme. The body naturally does this when one is sick and it will generally stop doing it when you get well. The problem comes in when one is chronically ill.

      Best of luck.

  32. ivy says

    Hi i want to warn anyone reading these comments not to follow them as a truth, because some of the ideas here may be missleading, i totaly dont agree that hypothiroid condition is a way of body downregulating itself, and the whole article gave no answers just raised question and pointing negatively, there is no solution just negative energy around many of these comments, i really empathyze with lyme desease patients, because what faith wrote looks like horrible condition, but also i was finding solution to my hashimoto and was almost sure i need to take t3, to my therapy, on t4 only for 3 years, i sturggled , went through bad stuff and am finally stable at 150 mcg, dont know if too high or not, but seems like stable now, after 3 years, but my t3 constantly low, lower then when i started therapy 3 years ago, and steadily fluctuating in tight range from very low to low
    There is no logic that the immune system would attack itself to downregulate! When we have heard that there is assumption gluten sensitivity causes autoimune response, my experience is all related to malnutrition, i was anorexic for 4 years from 16 to 20s and getting slow out of it, this combined with some methylation genes is i suspect the reason, why? 12% of population has bad methylation genes, under lot of stress this can weaken imune systme, you get some bacteria , or gut problems autoimune develops…..

    This is my theory , this is what i went through in my life, am 37 now, i dont believe that taking shower caused this or me going to the swimming pool for years, i know exactly when it all started, with malnutrition, i was starving myself out i think not many people would live through that…..

    So saying that adding thyroid hormons is bad is nonsense, how the hell would body heal from vicious cycle, i added up betaine and it helps my methylation and i hope this will help make t3 if not i think taking some t3 to my t4 will help, also my iron issue goes on since that time of my early 20s……and adding iron to bad absorption is usless, but saying it is harmful, this is just negative energy and making no solution, saying that everything that people add to feel better will not be good is just spreading negativity that is not based on any fundamental data, and projecting only from ones own experience, while my experience is genes + malnutrition for years, and system could not be rebooted once it could not absorb food properly, i suffered dhiaria until 3 years ago every month

    • Faith says

      Hi Ivy,

      I am sorry that you are experiencing thyroid (and/or other health) issues, however, am glad that you are trying to find your own answers.

      You mention not understanding the ways in which the body down regulates itself…and I will try to explain. However, please understand that everyone’s case is different…and each case of hypothyroidism likely has its own causes.

      That said, what is being referred to in the article, and what I was referring to is normal TSH, normal T4, low T3 with no other explainable cause. This means that the hypothalamus/pituitary is NOT asking for more…and that the body is viewing this state as normal.

      There are two primary reasons for low T3 when everything else is normal. One, the body is not converting enough T4 to T3 because the liver due to some dysfunction (or because one is consuming too many supressants like kale, broccoli, walnuts, soy, etc) and is failing to do so; or two, the body is not converting enough T4 to T3 because the body does not want more T3.

      It has long been recognized and known in the medical industry that when one is critally sick, in the hospital, that the body will over-make RT3 and have low T3. However, because this clears up on its own, when the patient is no longer sick, they dont treat it. This is why the medical industry ignores RT3 and low T3. However, the issue comes in when one is chronically sick…and so therefore chronically has low levels of T3…and whether or not to treat it.

      Thyroid autoimmune and the immune system in general are seperate issues. No one knows why the immune system attacks healthy or needed tissue in people…only that it does. The gluten hypothis is one of many.

      I too have a MTHFR defect, as well as many others in the methylation cycle…it is not just one gene that goes bad and throws a whole body off. Futhermore, if someone had a double defect in the MTHFR gene…either they would never be able to add a methyl group onto folate (and thus would be dead long before middle age) or some other gene is doing it that they just don’t know about yet.

      I went a step further…I took my reports and had my doctor test all the things that the reports asserted were affected…to see what, if anything, actually was affected…and I came to find out that things people who are into that stuff never connect to it were affected…like, I don’t make taurine very well…which is no where on their methyl cycle charts. And, there is not just the methyl cycle…but a number of other cycles. So your simple answer of just don’t eat gluten and take methylated folate fall short for many who are struggling to find answers…and, if it helps you – great. The methylated folate made me super sick…despite my defect. Taurine, on the other hand, helps a great deal.

      I am all for people finding their answers…as I am all for people learning (precisely) how the body does stuff…and, I am a big geek for that.

      So, to be clear…the immune system does not down-regulate, the body does…and it decides in ways no one seems to understand (yet). But if normal TSH, normal T4, and low T3…the body is NOT asking for more…and presumably wants it that way. The fatigue from it could be caused by things other than low T3.

      Hope that helps clarify. :)

      • ivy says

        hello Faith,
        oh yes now i get it much better now, so i went through my records, and made a chart of my free t4 and freet3 hormons and it shows that i felt the worst when that ratio was 5.5 and the best when it was below 4,my doc never took time to get that relationship, so now i am searching the help for myself, and in my country i dont have any expert to ask,
        i did not notice adding methyfolate helping me as well that much consistently, adding high doses of b complex was actually making me very tired,now i am taking some anti stress formula wich has that tyrosine, and b complex and for some reason i feel better, i just dont take them day by day, and i started agressively on helping my gut with probiotics, i know intestine is the key to immune system , so i read one great book, says that 2kg of body weight goes to those intestine bacteria, and experiments on mices shwo that if you inplant a sick mouse intestine flora who has diabetes 2 or is obese into steryl mouse, he will develop the same disease …..now the question is how to grow those good bacteria, what food to eat, they say that we should eat 30g of fiber per day to grow good bacteria in the colon, then there are 3 major types of bacteria, they learnt this in 2011, 60% of living bacteria still not known, but experiments show direct connection between type of bacteria in intestine to some diseases or obesity….which is so interesting to me, and so i am taking biotin, and b complex, betaine hcl pepsin, which did wonders for me, i started feeling like a human beign after so long long long time, i still have issues i want to solve, and they show clearly up in my blood tests, t4/t3 ratio should be around3.5% and its 4 for me, and it increased with the increase of levytiroxyn, i am on high dose now 150mcg….and TSH has dropped to below 1, but my sense of feeling better correlates exactly with that ratio t4/t3 and not so to tsh lvl….and my doctor did not see that….so now i am going with my chart to him and will ask the answer…….
        i would like to make my t3 higher since it was higher before taking t4 therapy! ……
        also have a feeling that blood sugar lvl has some to do with it, so i found one good article from dr ray pete, also reading his articles confuse me so much, one article he said one shoudl avoid fish oil , and all other PUFAs…etc so now i dont know who to believe,but this one on thyropid seems good to me
        http://www.thyroid-info.com/articles/ray-peat.htm
        am taking coconut oil, this is very good for thyroid….and
        my last solution is trying to take t3 supplement, and i am alsmost sure my progesteron is on the lower side….also my constant anemia…..have no idea what to do with it, maybe part of perniciosa aneamia, but my blood b12 is high….and i dont see chnage while taking high bcomplex with b12 vitamin..so i guess anemia is part of the whole package….

        and yes on gluten, i have tried making my sourdough bread, must say i fel good on it, ate just one loaf so far, i liked it so much, scientists from germany found out that it may not be gluten who is making sensitivity to people but ATI protein, newly added to enhance properties to fight against some insects! its a protein that flares up immune reactions, and autoimune responses!……so thats why i did not notice that eating pasta is so bad to me like eating bread….in pasta its preatty much safe….etc etc…

        i am a bit dissapointed that there is so little studies done on combined t3/t4 therapy, and so little knowledge about t4 to t3 conversion, and so little knowledge about it all, becasue seems like every other woman has some sort of thyroid issue, not that they have heath issues as of yet, but that it impacts the quality of life(beeing tired etc) and that modern medicine can not even offer 3-4 good theories to why is that…..

        huh, ill keep reading although i feel like my head will explode…

        • Faith says

          Hi Ivy,

          Knowing what your own ideal numbers are is a great way to help yourself, kudos. :) Also, I am soooo glad you are finally starting to find things that help.

          Interesting about the gut flora…I read an article that suggested obesity was caused by too much flora breaking down too much food.

          It can be hard to know what to trust as every week someone seems to come up with a new theory on how the body works.

          Increasing the T3, I also feel, is important. Your T3 should be in the normal range.

          However, I am not sure about the ratio idea…and here’s why. T4 is just the non-useable storage form and so even low amounts are fine, whereas T3 is the active form and is what the body uses…if that makes sense. If your body is not converting T4 properly into T3, then the excess T4 will cause your TSH to go down…and, subsequently, for your doctors to want to give you less.

          You might want to try taking a small amount of T3. It is called “Cytomel.” This will bypass conversion and raise your T3 levels.

          Doctors do not, generally, prescribe T3 because it is outside the “Standard of Care” which limits what they can do. The “Standard of Care” for thyroid issues…which assumes that everything else is fine and only the thyroid is failing…was written by the makers of Synthroid, the leading brand of T4. The thyroid “Standard of Care” states to dose based entirely on TSH (again, assuming that only the thyroid is failing)) and to only prescribe T4 because then the body can decide when to convert and how much to convert. It actually makes sense and is good advice if only the thyroid is failing…but that is only about 5% of thyroid cases. Doctors can lose their license if they go outside the “Standard of Care” so most are unwilling to do so. However, there are some who will.

          If, for whatever reason, taking T3 does not raise your T3 levels…then you might start looking at why your body wants its levels low. One main reason is some underlying illness…which may be so minor that you do not even notice it. If the body wants your T3 levels low, then your liver will filter out all the excess you are taking and get rid of it. The same holds true in opposite, if taking too much T3 and the liver is not filtering out the excess…then issues with the liver. Since you say you haven’t felt well, my guess at the low T3 is due to underlying illness.

          When the body has too much T4 (which you may because the TSH is going down), the body will convert it into what is known as “Reverse T3” or “RT3” which is non-usable. This is normal. However, too much RT3 (over the range), will cause it to compete with T3 in the thyroid receptors…making you feel hypo even when you have enough T3.

          Regarding vitamin B12…the true tests that you want for it (because the blood test is not all that accurate) are: Homocysteine, and Methylmalonic Acid. Methylmalonic Acid will become high if too little B12 and low if too much. It is what is used to process B12. Regardless of your B12 status, many people feel much better on Adeno-B12 or Hydroxy-B12. No one seems to really know why, but many people who are sick seem to be less able to use stored B12…and so take often through the day. My doctor says not to get the regular B12 they sell because (she says) it is mixed with cyanide…I personally disagree and think she doesn’t understand the compounds, but I haven’t looked it up so am just passing along what she said since I cannot say for sure.

          Oh thanks so much for reminding me about the ATI/Gluten thing…I had long since forgotten that and have been trying to get away from breads, only, like you, noticed that some wheat products do not bother me and others, like bread, do. Now my own situation (regarding bread) makes so much more sense. Thanks. :)

          Anemia is common in those sick…and made more common because paradoxically iron can look normal in the sick when a person is still anemic. It is called, “Anemia of Chronic Illness.” That is just the little bit I know about it, otherwise know not much else.

          Three tests that helped me the most were the Organic Acid Test (OAT); the Urine Amino Acid test (UAA); and a neurotransmitter test (this one from Pharmasan Labs). These showed, more conclusively, what I was and wasn’t making.

          Hope that helps. :)

  33. Faith says

    Hi Ashevegas Gal,

    Posts like yours do help…many are searching. It also helps for those of us who have been around awhile to learn what others are doing.

    You mentioned Medulla??? and adrenaline…are you saying that there is a product with adrenaline in it??? I ask because I don’t make adrenaline well and no one seems to know anything that can be done to help.

    • says

      You can’t take adrenaline orally even if some product happens to contain it, it’s destroyed in your GI tract. Sublingually _might_ work, but I wouldn’t count on it.

  34. Ashevegas gal says

    I’m just really hoping this helps someone bc it could have saved me years if I’d read something like this before:

    I was diagnosed with subclinical hypothyroidism but let me tell you, it felt anything but subclinical. I felt like a mental zombie. I went from being high energy, with loads of vitality, to being exhausted all the time. If I got up and kept moving then I could get through the day but if I worked (hospital, 12hr shifts) 3 days in a row then I’d sleep or lay in bed for two days after before wanting to do anything. Poor sleep (waking at 3-4:30) and always constipated. they diagnosed me with Irritable Bowel but the stuff they gave me never worked really or had terrible side effects. The worst thing was my mind. I simply could’t retain any information, could’t remember details or people with specificity, couldn’t come up with anything interesting to say – ever. I did a saliva cortisol test to see how my adrenals were functioning over the course of the day and I was a little low in the AM, little high in the PM. TSH was 5.5 (little high), T3 & T4 were a little low & the Dr started me on NDT, Nature Throid (getting up to 32.5 mg) until my levels showed more in range but even then, I felt only marginally better. It was terrible. At this point I’d had colonoscopies etc. I still had some trouble eliminating. The gastro Dr said I must not be drinking enough water, but I really was. It was so frustrating.

    A year later, still tired, more comprehensive bloodworm showed iron and D3 were really low, TSH 2.5, T3 and T4 okay according to labs but T3 on the low side of ok. I took things into my own hands, got some advice outside the normal physician realm. Here’s what I’m on now – and all my symptoms are pretty much gone, even my constipation.

    AM: Armour thyroid 15mg with 12.5mg of Cynomel (T3 that comes in 25mg tablets, I just break it in half)

    DAY: Thorne adrenal cortex (no medulla, so no adrenaline, and it’s raw), I take these copiously throughout the day depending on my patient load etc – probably use at least 4-6 a day most days. I still forget to take these on my day off which isn’t good on my adrenals.
    and D3 varying dosages

    PM: Floradix liquid herbal iron (dose varies depending on my cycle), and MK7 (vitamin K for absorption of the iron)

    I can think! I have energy! I poop! I sleep through the night, mostly!! Good luck to those of you who suffered as I did.

    One last thing, to those of you who are being told you’re depressed, that it’s not a metabolic problem – if you feel like the depression came as a result of your fatigue and is a result of that frustration then trust yourself! I can’t tell you how many times people told me I was just depressed. Made me crazy. Keep at it! Trust yourself! You’ll get there!

  35. Peggy Pearl says

    I’m 55 years old, female, diagnosed with Hashimoto’s thyroiditis in early 40’s. I was once active, working 12-14 hour shifts as an RN, then doing more physical labor when I wasn’t “working” and on my feet all day. I was also misdiagnosed with lupus at one point and eventually diagnosed with fibromyalgia. I have had several injections with corticosteroids in my spine over the past few years. I fell into an opportunity to try human Growth Hormone (hGH) in the form of injectable Somatropin. I knew that I was “guinea-pigging” myself in my desperate attempt to feel better, basing most of my symptoms at that time on fibromyalgia. I was reading a lot about hGH being produced during the sleep cycle and that people with FM didn’t fall into that phase of sleep at night. So, I decided to try hGH on my own. First it needs to be known that this is definitely growth hormone, from a reputable pharmacological source. Now, a question for Chris: I recently had my thyroid blood work done and for the first time I had a low T3 with T4 and TSH on the low end of normals. My T3 was 49 with a normal range of 100-200. I’ve never felt as rotten as I have over the past few weeks. No energy, muscle pain, thinking is foggy (at best). I was put on a Prednisone burst (today is day 3) and my Levothyroxine was increased from 75 mcg – 100 mcg (day 8). Is it possible that my use of hGH has caused the current problems with my thyroid? It’s been 1 1/2 years that I’ve taken it with dosing anywhere from 0.5mg to 1.2mg sometimes daily (Monday through Friday) with weekends off. Sometimes every other day dosing (M, W and F) with weekends off.
    Initially I had GREAT results with the hGH. High energy, great mood, increased stamina, ability to sleep at night, decreased depression, muscle mass like I’ve never experienced in my entire life.
    I always knew that I might be causing long-term damage or even the possibility of cancer or early death by taking the hGH but I was of the mind that I’d rather have 5 good years and die younger than to have 20 miserable years of intolerable pain and fatigue. But it’s now been about a year and a half since I started the hGH in varying doses (directed by myself!) – my physician is aware that I’m taking the hGH and has tested my IGF to be sure that I’m getting “the real thing” – which I am.
    I will be getting a full workup of my blood hormones in a few weeks, to include adrenal functioning. I’m wondering if it’s time to give up on the hGH by slowly decreasing it prior to eliminating it? I know my source won’t be around forever and at some point in the not-so-distant future I’ll be forced to quit taking it.
    Comments from anyone? Chris?

    • Faith says

      Hi Peggy Pearl, love the name by the way.

      Some comments…long ago I was dx’d with fibro (it was my first dx), thankfully, by a fibro specialist. He explained, in great detail, that (and fibro community please don’t hate me for being the messenger) fibro is actually a symptom (pain) of some other underlying condition…and, again thankfully, he encouraged me to keep looking for what could be causing it. To this day I am deeply greatful for his sage advice. I share with you so that you too will (hopefully) keep looking…because the answer is there.

      Regarding the low thyroid…that is very normal when one is suffering any illness. You may consider having your RT3 levels checked. The thyroid (primarily) makes T4, a storage form of the thyroid hormone…and the body (primarily the liver) converts it into T3, the active form of the thyroid hormone. However, it also converts some into RT3, permanently not-usable. Only the RT3 also docks in the thyroid receptors and blocks the T3 from getting in. In cases of underlying illness…the body often over-makes RT3 (above range)…and that can be a problem.

      Regarding Lupus…even if they changed the dx…you may want to run two additional labs, the C3a and the C4a…these are specific aspects of your immune system and will let you know (since dx’s are often subjective anyway) whether or not you have Lupus of something else that can mimic it sans the organ injury. I mention because you sound like you are getting worse?? C3a will be higher in Lupus…and C4a in the mimic…the reason for differentiating them, is that the treatments are opposite each other…and either harming the other.

      I know that many with fibro just want to feel better…often regardless of the costs, and I totally get it (am in same boat). But as someone who recently experienced the costs of horrible disfiguring and utterly embarassing dystonia (unwanted movements)…let me be the voice of some costs are not worth it. Sometimes it really is robbing Peter to pay Paul and you lose in the end.

      While the cost may be prohibitive, my best pain relief comes from theraputic massages.

      I also had VERY good luck with genetic testing (23andMe.com) along with a panel of labs to see what, if anything, was affected by the defects. Generally, the theory is to take whatever you would make after a defect…however, that only made me very sick…hence why the panel. The general panel was a UAA (urine amino acid), an OAT (organic acid test), and a neurotransmitter test by Pharmasan Labs.

      What I found out was that I was not-making Taurine, and I was making too much Glutamate and not enough GABA…which likely caused the muscle knotting (and the fibro dx). Before the Taurine, I was needing a wheelchair and used a walker…after the Taurine it has been a steady (slow, but steady) improvement to where a year later I no longer need the cane. I also take an rx called Baclofen which is GABA with a little molecule added to confuse the neurons into accepting it (supplement GABA does not cross the blood brain barrier)…which stops the tightening and allows be to not be so curled up. I still need to stretch daily and work to regain what was lost.

      Hope any of that helps.

    • says

      Growth hormone can affect the function of most other important hormones. It tends to boost thyroid hormones, androgens (and I think estrogen), but lowers cortisol or increases the need for it. I believe it is supposed to increase conversion of T4 to T3. When I started GH (for GH deficiency) my doctor said I may have to reduce my thyroid meds by as much as 30-50 %. So far I’ve had to reduce the dose by about 1/6.

      However, most of the other hormones GH affects also affect other hormones. If for you it happens to boost estrogen and lower cortisol more than it increases the T4 -> T3 conversion, that might explain the results you’re getting. You might need hydrocortisone, for example.

      How much of GH are you taking (or were, if you’ve since discontinued it)?

  36. Judy says

    My free T 3 was extreamly low, I was tired all the time, very moody, joint pain, dry skin, weight gain, and cold all the time. The doctor put me on cytomel 12 mg within the week I felt better, more awake, didn’t need my 32 oz of coke a day. Really everything got markedly better. Then after 5 months some of the symptoms returned. Took blood work again and my T 3 is good but my T 4 is below low. I am now starting on a T 4 medicine along with continuing my cytomel. Hope it puts thing to how they were for those great 5 months.

    • Faith says

      Hi Judy,

      I am sorry that you are experiencing all this.

      I would be very curious what your TSH numbers are.

      It sounds to me like you have a classic case of down-regulating. Wherein the body down-regulates itself due to some underlying issue.

      One of the first steps it takes is that the hypothalamus determines that it wants a lower level of T3…so the body (primarily the liver) converts less T4 into T3. If that doesn’t work, then the liver will begin over-converting T4 into what is known as RT3 (unusable hormone). RT3 will fill the thyroid receptors and prevent active T3 from getting in.

      Since you probably still have a thyroid, the last ditch effort your body will take to keep your thyroid level where your hypothalamus wants it (in your case lower than normal) is for your thyroid to not-make T4…which sounds like where you are at.

      Why the body down-regulates itself is not well understood…but it generally does so when you are ill. This is true of when we have the flu for a few days…and it is true when we begin developing a chronic illness. Often the first thing noticed is fatigue…and doctors most often check the thyroid when patients complain of fatigue…and due to the down-regulation going on, often rx thyroid hormone…as if that will help you stop being sick. It may improve the numbers, but it doesn’t change the status of possible illness developing inside one.

      While I certainly think you should try the T4…I would caution you to do so with eyes wide open. IF your hypothalamus has down-regulated you (which is what it sounds like), your body will continue to make every effort to keep your levels low. This means that even with the T4, you will eventually need more and more…until such a point where your thyroid stops producing any. At that point, your thyroid will begin to atrophy…and at some point will no longer be able to produce thyroid hormones anymore, and leave you permently dependent on taking either synthetic or animal hormone.

      I share that with you because…as most thyroid patients eventually find out, that man has not successfully reproduced nature at least as far as thyroid hormones go…and many (too many imho) thyroid patients (who are dependent on hormone replacement) experience ongoing issues. So just a word of caution.

      Also, a suggestion that you may want to consider checking into whether you could be developing some underlying issue that is causing the downregulation. I hesitate to suggest that because it seems that doctors these days are more keen on late stages of anything and are generally not at all adept on catching things in the very beginning.

      Hope that helps.

  37. Brandi Lyons says

    I’ve been following this thread. I have been experimenting with ways to limit or stabilize my dependence on T3 and T4 supplementation for several years. The most effective thing I’ve found so far is to follow the diet recommended at the end of the following article:
    http://www.abioenergeticview.com/2-9

    The author’s rationale in choosing these recommendations are explained in excessive detail in his book (free download) and all his blog and newsletter posts. I was able to completely flip my progesterone vs. estrogen ration within 5 days of starting on the diet he proposes.

    I’m still experimenting with all the ratios, but it’s been more dramatic than any creams, pills, herbs or other diets I have attempted. . . particularly the parts about going starch-free, choosing types of sugar, and limiting unsaturated fats. Those concepts were all shocking to me, but I had immediate relief when I tried them.

  38. Faith says

    Hi Mimi,

    You are correct in assertaining that no one knows what to do about normal TSH and normal T4 with low T3.

    Normal TSH (the pituitary’s request for hormone) suggests that the body does NOT want any more thyroid hormone. Normal T4 suggests that there is adequate amount of the storage form of thyroid hormone for the body to convert what it needs when it needs it.

    Low T3 (in the face of normal TSH & T4) is almost always a sign that you have some kind of illness going on in your body, possibly low-grade. In other words, for reasons no one knows or understands, the body has down-regulated itself…and one of the ways it does so is by making less T3. My own personal theory is that it does this to make you tired so you will rest in order for your body to divert its energies to healing you. But yes…no one knows why it does this. And, in addition, no one (in the medical field) cares because when you treat/heal/correct the underlying condition…the body will start converting more T3 all on its own.

    Now, no one likes that…particularly the chronically ill…because that means being tired for years…so we want to push nature, to take control of things that are likely out of our control no matter what we do.

    So…in this situation (normal TSH, normal T4, low T3), you have 2 choices: to supplement T3 or to not supplement T3. Most drs will NOT supplement as this is not an approved standard of care (yet), and they risk their license to do so. Realize, your TSH is the pituitary saying that your body absolutely does NOT want any more thyroid hormone. Also, few want to do the work to investigate what could be wrong with their health causing the down-regulation.

    There are a number of inherent issues and dangers with supplementing T3. But, first of all, it is important to understand how the body works. The liver, not only (primarily) converts T4 into T3…but, when it is working correctly, sweeps our blood of excess hormone and removes it. Therefore, if your body set its levels of T3 low…it will 1) not convert more than that set point; and 2) will sweep any excess over that amount out. Meaning, even if you take some T3…the liver will remove it.

    Now, a great many people’s livers are not working correctly…allowing them to have an excess of T3 (hyper-thyroid)…which is a deadly condition (another reason drs do not like to supp T3). Not only can it kill you, but too much T3 leads to a demineralizing of your bones (osteoporosis).

    What I have found, from experience (I do not have a thyroid and am on T3 only), is that the symptoms of too much T3 and the symptoms of too little T3 are identical…and, unbeknownst to most people, too much T3 causes weight gain as well…most believe it causes weight loss. It causes heart palps, which in some can lead to heart attacks.

    There are numerous other dangers…but the point being is yes you are right, NO ONE knows…the medical community doesn’t know…and worse, what things we have we can do are imperfect and, at best, dangerous. So all you have is a choice, to supp T3 or not to.

    Lastly, realize that the lab normals are arbitrary. They are for reference only. At best, man can only guess about nature. Your body (nature) knows best what it needs. It can be difficult to trust one’s body.

    Best of luck to you.

  39. Mimi says

    I read all discussions. They all led nowhere. No one seems to have any idea what to do about low t3 levels in light of normal t4 and TSH. it was not helpful.

  40. Pam says

    Hello,

    I was on 240mcg of Armour for several years and labs were is ok range but still presented with hypo symptoms. Started T3 Therapy mid December and worked up to 90 mg. Stayed on this for over a month before dropping down to 75. Tried 60 at night in the split dose for a few days but felt less well. Plan is to continue on 75 bid until I get hyper symptoms. Have not had labs since I started this . At the onset my RT3 was 21 and FT3 was 2.3

    My question is this. The last week-10 days I have noticed that I have much less strength in my arms. I play tennis and have been doing yard work – moving the trampoline, etc and I feel like I have about half the strength that I used to. Not working out per se during this time, but active.

    Could the T3 therapy be causing this?

    Thanks

    • Faith says

      Hi Pam,

      That is hard to say…as many things can cause weakness. The weakness is something that you should keep your dr informed of.

      That said, if your body (and particularly) your liver is working correctly, then you should never have symptoms of too much. The liver’s job is to sweep the blood of excess hormones…and it does so rather quickly.

      What I can tell you from experience that the symptoms of too much T3 and too little T3 are virtually identical…and that it is possible to paradoxially gain weight on too much T3. Although that is not much help.

      Sorry I cannot be of more help.

    • Faith says

      Great links, thanks :)

      The one problem with the Vitamin D studies…and this is nearly universal…and renders them false on their face is this. The Vitamin D that they test is 25,D…and this tests yoru levels of D2 and D3 and adds them together. D2 is Ergocalciferol; and D3 is Cholecalciferol

      However, 25,D (Ergocalciferol and Cholecalciferol combined) are the STORAGE FORM of Vitamin D…which is comparable to testing only T4. The salient fact missed (by doctors and researchers, not to mention savy internet readers alike)…is that they MUST BE CONVERTED in order to be used. Since no savy internet reader would ever advocate for testing T4 only and dosing based on that…they should be applying the same logic to the Vitamin D issue.

      It takes two whole steps for Cholecalciferol (D3) to become active/usable. First the body converts Cholecalciferol (D3) into Calcidiol…then, Calcidiol finds its way to the kidneys where it is converted into the ONLY USABLE form of Vitamin D, Calcitriol.

      the 1,25 D test tests for Calcitriol…the ONLY USABLE FORM of Vitamin D.

      I know, I know…many well loved doctors mistakenly call D3 “active”…but they are wrong. Both D2 (plant source) and D3 (animal source) are not-active. The mistake comes in because an old study found that we absorbed D3 slightly better than D2…but not enough so that Vegetarians need to concern themselves about it…and taking D2 is just as fine.

      While I personally cannot believe, or rather am deeply disappointed in, all the doctors who make this rather huge mistake…I do realize that it will take them about 5 years to catch up, but that one day they will…I would like tothink that the savy internet readers will get there quicker than the medical world.

      However, because of this egregious mistake…ALL STUDIES who only test 25,D are false on their face.

      As I said previous, those with a certain genetic mutation (that would never cause anyone a problem and, because no one tests it would never be the wiser), make too much of the enzyme CYP27B1 which converts D2/D3 (not active 25,D) into Calcitriol (active 1,25 D)…so that they will ALWAYS, ALWAYS, ALWAYS look low on the 25,D test…but will, in fact, be IDEAL in the 1,25 D test.

      As well, those with bacterial infections…even the low grade ones…will also over-make the enzyme CYP27B1 and over convert 25,D (not-active) into 1,25 D (active). Because Vitamin D is an endocrine hormone…and a steroid (aka immune suppressant)…this is a very critical issue…and the effect of the erronous testing, and erronous results, results in people with low grade bacterial infetions being told to take Vitamin D…which supresses their immune system and makes them worse because it allows the bacteria to florish.

      All I can say is shame on doctors who should know better. They either should know (because they studied this), or reasonably should have known…which puts this subject and treatment in the legal catagory of negligence.

      So please try not to be misled by studies that use this erronous information.

      In the case of autoimmune (which you would only know with an ANA/FANA test AND the specific antibody tests)…then, immune supressants work wonders. Vitamin D is a steroid in the same way prednisone is. But for those with a bacterial infection…this is the worst thing possible. The only way to test for and know if a true def exists is with the 1,25 D test that doctors hate to give. Why? I have no clue…but then much of what they do makes no logical sense.

      Hope that helps (maybe not you, but the other readers). :)

        • Faith says

          Hi Mary,

          I thought that is what I said(??)…yes, the belief is a bacterial infection that can become autoimmune. However, I do not know anyone who is treating their Lyme with immune supressants.

          That said, very little is known or understood about Lyme at this time (although many act like they know)…I believe that we are still in our infancy of understanding it.

          Lyme is believed to be a bacterial infection…and, about a third of late stage (disseminated) patients seem to have significant improvement from antibiotics. The other two thirds, however, do not seem to improve much from antibiotics and generally grow worse (overall) on them calling into question whether it truly a bacteria?

          The other question regarding those who get worse on antibiotics is, has it become autoimmune? Again, no one (unless things have changed recently) in the Lyme community would reccomend immune supressants autoimmune or not.

          That said, some have greatly improved on anti-protozoa meds…begging the question.

          As well, many who have late stage Lyme are positive for viral activity…likewise, begging the question.

          What I do know, is after a year and a half on antibiotics, that no one knows (yet) any agent that kills it 100% effectively…and then there are the 77 studies that those who argue for the long term antibiotics hold up showing that even after years of antibiotic treatment they still pull out live Lyme spirocetes. For me, this just begs the question…maybe it is not a bacteria, but some other (viral, protazoa, parasite, etc) critter in need of a different anti-…but that is just me.

          I do believe that within the next 10 years (and certainly by the 20 year mark) they will discover what kills Lyme…and by the what kills it (ie anti-protazoa) we will better know what it is.

          I also believe, that those who are better on antibiotics should be given them for as long as they are needed…and I am deeply grateful that some are helped. For the sake of the rest, who do not do well on them…my hope is that people keep looking.

          :)

      • Honora says

        Here’s our lab’s explanation:
        This is not a valid measure of Vitamin D Stores.

        It is the active metabolite of Vitamin D, which may be elevated in patients with granulomatous disease and hypercalcaemia. Apart from the rare indication in patients with hypercalcaemia of unknown cause and a suppressed parathyroid hormone there is little or no clinical reason to request this test.

        For further information contact a Chemical Pathologist or Endocrinologist

        I guess it’s the same scenario for T3 then. It doesn’t measure stores of thyroid hormone (T4), just the active hormone and yet is thought by many doctors to be a worthwhile test for management of patients with known thyroid disease. Go figure…

        • Faith says

          Hi Honora,

          That would almost be funny if it wasn’t so sad.

          For everyone else that hasn’t caught the issue yet: 25,D (the combined cholecalciferol (D3) & ergocalciferol (D2), collectively known as calciferol), which is just a metabolite or precurser (pre-vitamin they call it) of usable Vitamin D, but is NOT the usable Vitamin D (yet). Cholecalciferol (the D3 you take) is converted in the blood stream to create Calcidiol (likewise a precurser, or pre-vitamin to active Vitamin D). Calcidiol is then converted, in our kidneys, into Calcitriol…the one and only truly active and usable Vitamin D. This is tested with the 1,25 D test.

          In two situations, bacteral infection and certain genetic defects (that you would not notice), the body makes too much CYP27B1 (also called 25-Hydroxyvitamin D3 1-alpha-hydroxylase) which is the enzyme that converts D3 (unusable) into usable Calcitriol…resulting in an always low 25,D test…and a high or normal 1,25 D test. However, by whatever stupidity, the medical world only ever tests 25,D….which results in a lot of people thinking they have low Vitamin D, when in fact, they may not. In order to properly know, one must test both 25,D AND 1,25 D.

  41. Becky says

    Treating thyroid without T4 is tough, without a doctor is tough. When I first started on t4 levoxyl, months later I noticed that my T4 was on the high end and my T3 was at the low end of the reference range. My toes were still purple and I was still not saying things right sometimes. I talk to the doctor about it and asked him about Cytomel. I could not tolerate Cytomel because it was not time released. It would make my heart race for a couple of hours and that’s all I got out of it. I try splitting the pills and it really wasn’t working. Went back to armor split the pills because I was getting tired by 2 o’clock in the afternoon and it didn’t work either. Then back to Levoxyl and time released compounded T3. It worked. I was at a ratio of 2 to 1. When I stopped drinking tap water -purified instead. My T4 levels jumped up and my Dr reduced t4. I stopped taking T3. . I am not good On T4 112 µg alone. Recently I found out that my vitamin D was below normal. I have been taking vitamin D for about three days and I do not feel cold at 63 degrees…outside temp. I read an article that suggested that people who have autoimmune thyroid disorders should be taking vitamin D supplements even if within reference rage. I am taking 2000 IU’s (1000 twice per day) at this point even though the doctor suggested 1000. My skin has been dry (not from vitamin d) and I have noticed fishscale type appearance to my skin. Not terrible, but it looks crinkled. I have actually had dry skin like this for more than a few years. The article also suggested that vitamin D supplementation can help to convert T4 to T3 more efficiently. High hopes! At this point I am able to wear a short sleeve shirt and shorts when it’s 63° outside and I am comfortable. Last week I felt cold when it was 70° in the middle the day in the sun. I was biking for 25 miles and it took 2-3 days for my t3 to catch back up. Slept a lot. Will be interesting to know if intense excerises will be better without the t3.

    • Faith says

      Hi Becky,

      Thanks for sharing your experience and I sure hope it works out for you.

      Had some thoughts to share.

      One is, you may want to consider trying a T4 called “Tirosint”…it is T4 with no fillers and may clear up some of your issues. It is a name brand so your doctor will need to make an argument for it to your insurance.

      You are not converting a whole lot of T3…and, although many people try a gamut of supplements, the most common cause for not converting much T3 is some form of illness going on. As Chris writes in this article, the low T3 conversion will clear up when the illness does and so may not need to be treated. As someone without a thyroid, and who makes high amounts of RT3 (over 180 points above range) and collapses when on T4, is chronically ill, and who takes T3 only…my view is that it is unrealistic to ask someone to remain hopelessly tired and hypo for years just because they have a chronic illness.

      The problem of hyper symptoms upon taking T3 are not uncommon…but do also point to a possible liver problem. In a properly working body, the liver would flush any excess T3 out of your system within a minute or two of it appearing in your blood stream…and then, of course, you would grow increasingly hypo as your body uses the T3. There really is NO great work-around to this issue…T3 needs to be taken throughout the day to keep levels up. I have no experience with the timed release so I cannot speak to that…I take mine 10-12x a day and it works well that way.

      The issue of Vitamin D is a deep and confusing one. First off, Vit D is not a vitamin at all, but rather an endocrine hormone…a lot like thyroid hormone. When they test your Vit D levels, what they are testing is 25,D…this is a STORAGE FORM of Vit D…and is the exact same as testing T4 only. The active form of Vit D is the 1,25 D (same as T3)…and they hate testing this in the same way they hate testing RT3. However, I strongly advise getting BOTH tested (25,D + 1,25 D) before supplementing. I also am deeply concerned that anyone is recommending to just take Vit D anyways because it is a fat soluable supplement and excess is not flushed away, but can build to toxic levels. The reason for the dual testing is this…people with certain genetic mutations (that you would normally never be aware of) AND those with bacterial infections will make too much of an enzyme called CYP27B1…this is the enzyme that converts 25,D into 1,25 D. What this means is that these people will over-convert 25,D into 1,25 D (like those who over-convert T4 into T3). Now, most who do this will have chronically low 25,D (the one they test) and perfectly ideal 1,25 D (the one they do not test). However, if you are sick and doing this…you will over-make or over-convert 25,D into 1,25 D and have too high 1,25 D (the one they don’t test).

      While this is not a huge problem for those who are autoimmune…because Vit D the endo hormone is a steroid and immune suppressant…it IS a huge problem for those with bacterial infections because excess Vit D will suppress their immune system’s ability to fight the infection.

      They call the issue of low 25,D (the one they test) and high 1,25 D (the one they don’t test), the “Vitamin D Reversal Pattern”…of which I also have. For me, who like you was also tested and found very low, tried taking Vitamin D…feeling great at first and then very tired and sick, only to feel better again when I stopped taking it.

      I advocate for the dual testing because I was so shocked when I learned about it…and especially because no one who is in the know now on thyroid issues would only ever test T4 and dose based on that, that I find it sad that doctors are still only testing 25,D and dosing based on that alone. I know that they will catch up eventually…they just haven’t yet.

      I am not saying don’t supplement…only adding so if you end up not feeling good supplementing, that there may be a reason for that.

      Lastly, the liver (primarily) converts thyroid hormone. I don’t have any suggestions for what you can do to help or support your liver. And just adding again, that low T3 when T4 is fine or high, is generally a sign that you are sick with something…and is likely to remain like that until you fix the something else.

      Best of luck.

      • Becky says

        Sick with something…? I have osteopenia. Triglycerides are pretty Low-50, and DHL is high end of range. Liver function results are normal.
        How is your tsh level? Mine was below normal as it has been since taking thyroid replacement. My new dr. Is intense about it and wants to reduce my t4. My t3 is 83 with the range of 78-181 so if the dr reduces me to 100 mcg makes sense I will be t3 deficient the next time I’m tested. Other dr didn’t care about tsh. I tried tirosint and previous dr tried to make a case for it but ins wouldn’t cover it-$85/mo. Some Walgreen’s make compounded time released t3, (doesn’t have to be refrigerated)but it has been hard working with dr’s to get to that point as of yet. $35/mo….

        Anyway, I did well on t4 and compounded t3. Went to jamaica, frig broke and my t3 ruined so I went days without, felt fine until t3 dwindled and here I am trying to working it out again after 7 years of doing well.

        Let me know if you can come up with any underlying disease based on this:
        The thyroid problem was triggered by a sore throat in 2002 that got worse over 2-weeks, amoxicillin, then cortisol, then z-pack made my tonsil swell tremendously. Ent gave me augmenton and it resolved. For the next 3.5 years my dr did not catch that I was hypo even though I visited frequently with many problems, developed tennis elbow in 2006 and was prescribed 3-4 weeks of pred and went hyper-(developed bump on neck-nodule and made appt) doc didn’t catch it and put me on t4. After ramping up from 25mcg to 100 I couldn’t tolerate t4-had hyper symptom again. Of course the first time I went hyper I didn’t know that It was thyroid storm-just knew if I didn’t lay down and stay still I would probably die. I was not on t4 yet due to testing. (Uptake tech asked me why I was there, told him hypo and he told me I should get another blood test- but didn’t tell me I was producing a lot of t4 on the uptake). Asked doc at that point If he thought I could be hyper instead of hypo. He said there is no way and did nothing else but hand me my first samples. So, I was in myxedema crisis, and came out of it in not such a graceful way. If diagnosed before the pred, I would have been admitted to the hospital.i was 112 lbs and had water retention. I even tried to tell the dr when I went in for tennis elbow that things were not right an he basically ignored me. So, I read about treatment for myx. Cortisol, high levels of thyroid and antibiotics. I got pred, went hyper and requested a round of augumenton after discussing all this with the doc at the time. While taking aug, I could feel a sensation across the top of my head like something was clearing out-only went on for a couple of days.

        • Faith says

          Hi Becky,

          Hard to say what the underlying illness is to be exact…however, as we share a number of similarities, I will say that there are a great many thing going wrong with people these days that haven’t made it into “standards of care” (yet) so doctors don’t know about them. Sort of like workers who are like, “if it doesn’t come up on the computer, then they don’t know what to do.” You probably experience this as well, if you don’t fit perfectly in a dx box…then they have no clue. It is a challenge to be patient with the drs. The current “standard of care” for thyroid that they must follow is to dose based on TSH…it is a challenge to find a dr that will operate outside of that. Unfortunately, this assumes that 1) the pituitary/hypothalamus is working correctly; and 2) that the only thing wrong is the thyroid. Never, ever have I seen a dr or internet thyroid group talk about the liver’s involvement in hyper-thyroid since hyper is ultimately a failure of the liver to remove the excess hormone. Many people pay for cash-only drs. For those of us who have to depend on insurance covered drs, my suggestion is trying an “integrative” dr…they try to get to the bottom of things, treat the whole system, and can use supplements as well as rx’s…and are far more likely to use T3 and dose based on how you feel.

          When on T3 only, my TSH is all over the place…less than 0.1, less than 0.1, 9, 14, less than 0.1, 17 (normal being 0.5-5.0). all in a span of 6 months on the exact same dose.

          The lower bone density sounds very much like hyperthyroid (and too much T3)…am guessing you have had your alkaline phosphatase levels checked. Mine are also high…only my dr thinks is gall bladder related which can also cause that.

          The liver tests they run are actually liver death/damage numbers and not for function (yes, stupid, I know). Unfortunately, I don’t know what the function tests are…but do know, in the basic panel low BUN and Creatinine together = liver; high Alkaline Phosphatase = liver (also bone demineralization); and higher than normal ALT = liver. Mine are all wonky…but only slightly so. Your cholesterol numbers are great…which the liver makes…it would suggest that it is healthy.

          No one seems to know by what process (exactly) the body down-regulates during illness. They see the after-effects (low T3 et al), but they don’t know how or why. I imagine that something is instructing the liver to make less T3 (or, to remove more T3). Not knowing what it is…no one knows what to do about it. Many say to take supplements of the things you need to convert…but, poor conversion is rarely due to def. Also, many things one is told to take (selenium, Vit D3, etc) has the exact same symptoms for too much as for too little…esp selenium. My recommend is always test to ensure def before taking…esp as now that I have learned about the genetic stuff, supping things can really make a person sick.

          Like you, I have chronic tennis elbows…started from muscle knotting in my forearms. I get cortisone shots, this helps with knotting all over my body. My dr gave me Cortef based on my improvement from the cortisone shots. I still take a partial pill once or twice a month to keep the knotting down. Eventually, my body became very tight and physical therapists had to stretch me out. My doctor gave me Baclofen which is GABA with a little molecule added to confuse the neurons into accepting it. Later on, a different dr I see who does the genetic stuff, ran a neurotransmitter test from Phramasan…this showed that indeed I was making too much glutamate (turns muscle/tissue on) and not enough GABA (which turns them off). I tried all the various GABA supplements, but they did not help…the baclofen works great and is cheap as far as prescriptions go (I think 11$ a month). So, just a thought on a direction you might pursue.

          On the same line, my cortisol is fine…but by the same neurotransmitter test, I am not making adrenaline well. Everyone seems to know what to do for low cortisol…but no one knows anything about what to do re low adrenaline.

          You mention needing to lay down or die…omgosh, I feel like that so often also…however, until you mentioned it, I had not thought of that as thyroid related. To me it feels like my body doesn’t make the chemicals it needs to support life…and if I do too much it is like instant forced need to sleep to restore.

          Like you, I also have water retention.

          The sore throat suggests to me two possibilities…it is common to both autoimmune and infection. As well, many in the autoimmune community believe that the autoimmune condition is caused by an underlying infection of some nature. That you improve with antibiotics suggests some kind of low grade infection going on.

          I would be very curious your temp. If it is lower than normal, this would suggest Lyme.

          However, that said, my first thought on low grade infection is to wonder if you have recently had any vaccines? They don’t tell you this, but they can cause a permanent state of low-grade infection in adults. The MMR vaccine used to be attributed to chronic fatigue syndrome…is a virus, but operates in the same way, a permanent low grade viral infection. The other thing it suggests is Lyme disease. Unfortunately, the screening test for Lyme only has a 35% chance of picking it up. The gold standard test for Lyme is the Igenex test…they don’t take insurance so it is $260 upfront and then insurance reimburses. Your dr would have to get the kit, draw the blood, and then you send it in. Lyme is very insidious…and can mimic so many things. For me, the main symptom was that for years I never got sick and my temp was a degree cold. There seem to be 3 kinds of people with Lyme…1 who gets better on antibiotics (and benefit from long term antibiotics); 1 who goes up and down on antibiotics; and 1 (like me) who get worse on antibiotics. Lyme can turn into autoimmune. The one benefit to a Lyme dx, is that you have a running chance of knocking out the underlying infection of autoimmune…imho…with the antibiotics.

          Augmentin is not usually used to treat Lyme…but that you improve strongly suggests bacteria of some nature.

          If you haven’t yet…you may ask them to run these tests:
          ANA/FANA (for autoimmune)
          RA Factor (also for autoimmune)
          C-reactive Protein (for inflammation)
          SED Rate (for inflammation)
          CD57 (immune response, low if Lyme)
          C4a & C3a (immune differential between Lyme & Lupus)
          CBC w/ Differential (will tell you which white blood cells are most active)
          Blood Smear panel…not sure what it is called exactly, but will tell you viral or infection

          You also might get a test of the usual suspects like EBV.

          The two immune tests specific for Lyme are covered by insurance (although you may need an order for an outside lab, like Quest), and if suggestive of Lyme then would warrant the Igenex test…if not, then you can save the money re skipping the Igenex.

          Beyond that…re hypo/hyper thyroid, which you seem to be swinging…the liver should sweep the excess within minutes of it being there…meaning, no one should ever be in a state of hyper for long. I know mine used to…not so much now. No one knows the process by which it does this…or, how to help it do this…drs don’t even look there, people on the internet (smart as they are), took years to realize that the liver was even involved. Unfortunately, I don’t have any advice either…as I am still trying to puzzle that out for myself.

          It does, however, also make sense that our body’s need for thyroid varies each day…even hour to hour. It might work better for you to take T3 once every few days and wait until you feel low to take one dose again?? Just a thought.

          Hope that helps. :)

  42. says

    I haven’t had health insurance in a decade, so I self-medicate based on a lot of experimentation. . . I am extremely sensitive.

    My current dosage:
    88 mcg Eutirox (half tablet 2X daily)
    a small sliver of a 2 grain tablet of Nature Throid 2X daily
    Half a Kelp tablet in the morning.

    If it gets a tiny bit low my hair begins to fall out, I get very “still” feeling, constipated, and the two outer fingers on my hands go numb when I sleep.

    If it gets even a tiny bit high (especially with the T3) I get sweat on my upper lip, I can feel my heart beating hard, and sometimes there is menstrual spotting.

    I have been on a gluten free, low starch diet for five years. I still have some symptoms that persist regardless of everything I’ve done: acne on the jaw line, hirsutism, some degree of hair loss is constant, and I rarely menstruate.

    I would love to hear about more ways I can treat this without thyroid replacement, since it is very difficult for me to get ahold of that without a doctor.

  43. Annie says

    I had RAI for Grave’s Disease in 1993 so I have 20 years experience trying to find a good solution to replacement thyroid. I have been diagnosed with carpal tunnel in both wrists twice. Once in 2008 and again recently. Both times, it was when my endocrinologist did not support me taking a small dose of T3 in addition to my T4 medication. I have chronic pain issues, well documented. There is no question that my pain is worse when T3 is removed from my Rx. My current endo refuses to even test for total or free T3. My mother had this type of skeletal pain and so does my daughter. Long family history of thyroid disease. I agree it is an inflammation issue. It breaks my heart to be on ibuprofen and narcotics when I feel a small dose of 2.5 mcg of cytomel twice a day could resolve much of this pain and has in the past. We don’t all fit inside the same bell shaped curve.

    • Faith says

      Oh Annie,

      Your story breaks my heart…and I am so sorry that you are having trouble getting some T3. I am also very interested in your T3 pain connection as I too have a lot of pain, and tendonitis…and, like your carpal tunnel, I have chronic tennis elbows that I get cortisone shots for.

      On getting some T3, as you have already discovered, most endos will not give it. You may have better luck with an “integrative” doctor. Another solution, although not the best one (but in a pinch), many psychatrists dose a small amount of T3 for depression. I know, it baffles me that they and endos don’t talk…but such is the practice of medicine these days. Integrative doctors usually operate as primarys, they are more well rounded and try to get to the bottom of things.

      For me the pain thing went opposite to yours (although I still see the T3 connection)…mine started when I was put on T3 only, with the tennis elbows. Since then all kinds of bone, muscle, tendon pain…and my body tightened up (a lot). Two diagnosises…a gaba/glutamate imbalance (make too much glutamate and not enough gaba)…and I was dx’d with late stage Lyme disease. The screening test for Lyme only has a 35% chance of picking it up…so the gold standard for discovering it is the Igenex Lyme Screen which is $260. Your insurance will remburse you (unless you have state aid in which case they don’t)…and is well worth it. Other screeing tests (and easier to get) are the CD57 and C4a. If the CD57 is low you probably have it and if the C4a is high you probably have it…and then it would warrant paying for the Igenex test.

      I mention this because two of the antibiotics my doctor used, Cipro and Clindamycin, took away 80% of my pain…esp the bone and muscle pain. Just something to consider.

      Please try seeing other doctors. You can make “interview” appointments where there is no exam…just you seeing if you want that doctor. Many now are on T3, so there are more of them out there than before. Sorry your endo is such a pill about it.

      Hang in there,
      Faith

      • says

        It’s a far better idea to take bromelain than NSAIDs or steroids for things like carpal tunnel and tennis elbow. It’s much more effective and much safer. You probably need a dose of 500-1 000 mg a day, in at least two doses. It’s very safe. If you get diarrhea you’re taking too much (at once).

        Of course it’s better to get to the root of the problem – when I was hypothyroid I suffered from shin splints, plantar fasciitis and Achilles tendinitis. But at least bromelain is far superior to Rx anti-inflammatories.

        • Faith says

          I would agree with that…I think I was referring to cortisone shots/injections…you get them 1x every 4-6 months and it takes all the pain away. 1 dose every 6 months, at least to me, is far preferable to anything one has to do daily…but that is just me.

          I would also agree, getting to the root of the problem…and am again, amazed to hear yet one more person connecting tendon issues to hypothyroidism. Thanks.

          • says

            If you knew how dangerous/harmful cortisone injections are, I doubt you’d be saying that. In regular use steroid treatment always has its side effects and risks, which tend to be hefty. Some of them are even unavoidable.

            • Faith says

              Hi Maija,

              Again, I was speaking only of the injections…which I do get and which I do believe that I understand the risks…which, to me, are negligable in comparrision to daily pain killers which are also something I take.

              Injections in elbows, my understanding is that I risk only the tendon it is injected into…to which my doctor has stated that we have other tendons that do pretty much the same thing, so that the entire elbow is not lost just that one tendon…and, the benefit is that I am pain free for 6 months.

              Daily pain killers, I now have liver damage…and I don’t even take them that often. If I try over the counter I get stomach pain.

              Also, to explain, I have pain other than my elbows (hence, painkilles)…and, when my elbows are bad I cannot lift a cup or spoon to my mouth, I cannot use a cane or walker so I cannot walk safely, nor can I pull my pants up or down to go the bathroom…so, for me, I weigh nearly complete lose of use of arms…with the possible of loss of one tendon.

              So, for me, I will continue to choose to feed and dress myself and take what seems, to me, a very small risk. I will also, continue to choose, the 2x year shots over more intense multi-daily pain killers.

              As well, before you down people’s choices…many with autoimmune conditions need those daily immune supressents…and I continue to receive tremendous relief from systemic muscle knotting by taking a small dose of Cortef monthly…likely due to not making enough on my own.

              That said, no medication…or over the counters…is without issue. And, for what it is worth, I a told that the surgery they would give me for my elbows is clipping the tendon…the very same tendon that could be lost from the injections…which leaves me still siding with the injection. I have been getting then for three years now and I haven’t had any issue…and have even had the added benefit of the relief from the systemic muscle tightening. We will just have to agree to disagree.

              Best of luck.

  44. Michele says

    My T3 still has been low with migraine like symptoms every ten days..then three days of feeling motion sick, lightheaded..then ten days of normal “woozy”. Something new I noticed is on my lower lip, inside membrane is a series of four pin head size clear bumps..all straight in a row. The soft palate in front of my tonsil (in the fold) also has a small bean size nodule that seems to put pressure at times on my ear. Have had doctors look at them..the one they say looks ok and the other can only feel, not see and send me on my way. My question…could this be any type of autoimmune disease as I already have hashimoto? Would appreciate any input.

    • Fern says

      It seems like something the doctors know nothing about, but you shouldn’t let them just brush you off. Ask them to test you further or to refer you to a specialist.

  45. Mary says

    I agree with the progesterone hormone comment. Even if it’s natural progesterone. It caused me issues also. One other questions, my T3 was extremely low but TSH normal. Now on Armour Thyroid and TSH is too low now. Also, my T4 lowered. How do you get the right balance? I don’t want my bones to demineralize.

    • Faith says

      Hi Mary,

      I third the taking of any endo hormone without proven need as it is just such a sensitive and complex system.

      TSH low suggests your body doesn’t want more thyroid…and it is interesting that you are also low T4. That said, overall in the grand scheme of things, T3 is the number you need to be most concerned with.

      Armour often uses fillers that inhibit thyroid hormone…that may be one cause. Another cause may be that you have thyroid autoimmune and are thus attacking the Armour.

      The test for the bone demineralizing is the Alkaline Phosphatase…which i personally think is a good idea for people who are on T3 to run every now and then (especially if taking more T3 than is warranted by serum thyroid levels).

      That said, I am one of those people who has my TSH waffle from less than zero to 17+ and has no bearing on serum thyroid hormone levels. I strongly suspect that some people have faulty pituitary/hypothalamus’s. However, testing for that (I am told) is not very simple.

      Not sure what your doctor looks at, but your T4 being low (to me) suggests that you are on too low a dose.

      Hope that helps.

      • Mary says

        Wow, thank you for that information!! I did have my Alkaline Phosphatase tested and it was on the low side (36), so I guess that means it is not causing demineralization. I do have Lyme Disease so you are correct on the autoimmune part. I’d like to up my dose of Armour, but it causes me to get shaky and tired on higher doses. Can having a low FT3 cause physical issues?

        • Faith says

          Hi Mary,

          and you are welcome. The tired and shaky part means you are getting too much and, for whatever reason, your liver is not clearing it as quickly as it should. Normally, the liver clears out excess thyroid hormone.

          Ah…the Lyme disease is why you have low FT3, and you will likely have low FT3 as long as you are sick (this is what he says in the article we are posting under) and will reverse itself when you are well (if anyone ever ets well from Lyme).

          No one really knows why the body sets FT3 (the nly one you use) low when one is sick…only that the body does. It is part of how the body down-regulates itself. My thought is that it does so to make us tired enough to lay on the couch to divert our energy to getting well. Apparently the body does not have a program from long term chronic illness. I wish I had a better answer for you, I too have Lyme and suspect that this is something we will deal with for maybe our whole lives. Sorry you have Lyme.

          Have you had your RT3 tested yet? If not, you may want to. The body will increasingly turn T4 into RT3 when one is sick…same down-regulating process. The only way to make RT3 is with T4 (mine gets super high), so I take T3 only and do pretty well on it.

          Anyways, I hope that helps…hope your healing journey with Lyme is going well and continues to go well.

          I have found some good help in doing the genetic testing from 23andMe.com. From there, running the raw data through Genetic Genie or Livewello…and from there reports, having those things tested (rather than just taking the stuff they say which made me sicker)…from there I found out that I was not making a few things and by taking those things feel worlds better.

          Hang in there. :)

          • Mary says

            Thank you for that info. I noticed that you recommended testing for Epstein Barr Virus. I did get tested for that and HHV-6, and they were both high. My EBV IGG was 6.09 and my HHV-6 IGG was 6.95. Do you know if this is of any importance? I’m not sure I understand the significance of these. Thank you again!!!

            • Faith says

              Hi Mary,

              You are not the first person with Lyme whom I have heard has viral activity going on, a significant part of the population with Lyme does as well. I also do, only not that much. I would be most interested to find out how you did on antibiotics (if you took them). When I was part of Lyme groups, I noticed that about a third of people on abx got better right away and all uphill from there; one third waffled up and down; and one third got worse. Since I was one of the ones who got worse (1.5 years on abx), I have often wondered about why. My ANA and RA was positive and so I considered autoimmune being the reason. However, I have also speculated whether Lyme may not be a bacteria but some other classification and thus need something other than abx. One of the things I have wondered most about is the low grade viral activity so many with Lyme had. What I didn’t do was correlate viral activity with those who do worse on abx.

              Either way, any illness will cause the body to down-regulate. It is just that most illnesses last only a short while, so RT3 goes up and FT3 goes down, and then go back to normal when the person recovers.

              The problem comes in when someone has a long term illness because RT3 stays high (blocking receptors) and FT3 stays low for extended periods of time.

              Correlating the experiencs I have read in thyroid groups, there doesn’t seem to be a way to correct it as far as I can tell…if it has to do with illness.

              The reason for this, I suspect, is because when ill the hypothalamus sets the body’s level of FT3 need low…and the entire body works together to make sure it stays at that level. Meaning, the thyroid will make less and less (if one still has their thyroid), and the liver will clear the excess.

              What I usually tell people is try the T3 or whatever you are taking and see if the levels go up. If the FT3 stays low despite increasing doses, then you can be pretty sure the body is setting the level low. If, on the other hand, the levels go up, then it is a pretty clear indication that the thyroid (and liver in terms of T3 conversion) are failing their job and supping is necessary.

              The article here, he wonders whether low FT3 should be supped or not. I think he sides on not (been a while since I read it)…I am not so sure since no one seems to have come up with a plan for those of us with long term illness.

              Hope that helps. :)

              • Mary says

                Wow! Thank you very much. You’re so helpful. I have a difficult time getting answers and understanding everything. I could go on and ask you so many questions I have (especially about Lyme), but then you would be busy writing back all the time. I REALLY appreciate your input!!!

  46. Sandra says

    Hi,
    I ‘d like to warn people who might be prescribed Progesterone by a well meaning naturopath. I have a thyroid condition (I suppose) , my TSH was 12.5 so I took Synthroid for over a year..it stopped working recently so now I switched to NDT. Before doing that, I had to increase my dose of Synthroid every 3 weeks trying to control a multitude of symptoms. To keep this short, my ND said “lets try progesterone” because my problem might be related to Estrogen dominance. I took Prometrium 100mg once a day for about 2 weeks. I noticed increasing fatigue but thought that was normal. Eventually, I couldn’t vacuum the house without having to lie down afterwards. Then, out of the blue, I almost fainted in a kind of cardiovascular meltdown attack , low blood pressure, profuse sweating, hard to explain but a severe and acute incident. Stopped the Prometrium after that and it took two weeks for my circulation and cardio-vascular system to normalize. I was dizzy with low blood pressure for 2 weeks and it felt like my blood had trouble reaching my extremities throughout. Please be careful with this hormone. A friend of mine had a similar experience but her blood pressure rose to lethal levels. We were both diagnosed with Hashimoto’s .
    Also, on Synthroid, I had burning eyes that hurt daily-I have now taken NDT for 5 days and the burning and pain I had for a year has vanished. It is yet too early to tell if that is the T3 added but I am hopeful. My FT3 was always in the lower range.

  47. Kathleen says

    Hello,

    Does anyone have any information about ESS and Crohn’s Disease/Inflamm. Bowel Diseases?

    I have Crohn’s and my 15 year old son is being monitored for it but has other chronic gut absorption issues. We recently found out via bloodwork that it appear he has ESS going on as well.

    Any help or info you have is greatly appreciated!
    Thank you!!!

  48. Karen says

    Well, nevermind. For some reason the correct link won’t come across. You can search Youtube for:

    MTHFR and Thyroid Disorders (Dr. Ben Lynch).

  49. Karen says

    Really interesting lecture regarding the relationship between methylation and thyroid hormones. Even if you don’t have methylation issues, low or high thyroid hormones (T4, specifically) can cause methylation issues as the methylation process requires homeostasis within the thyroid hormones.

  50. Kimberly says

    I have been trying to find out what’s wrong with me. I wod love to know what tests I should request be performed. I have tried to be proactive in finding out what is causing all my issues but as you know they health issues can be so complex. I have had constant fatigue and weight gain although I eat. Low carb and sugar diet. I stay away from gluten. I developed a growth under my elbow similar to a rheumatoid arthritis nodule but I’m still waiting to have it diagnosed. It hurt so bad because it was causing what felt like displacement of the other bones to make room for the growth. I couldn’t move my arm for 6 months and could barely even hold a glass to drink with that arm. My hair has been falling out and has started to become pretty thin. I also suffer from hormonal acne and ovarian cysts, as well as chronic migraines that can last a month. I had my first migraine when I was 2 where I was given an MRI and spinal tap. Last year I developed chronic diareaha for 4 months and then it settled down after a cyclosporine food infection. When I get sick it is like my immune system is not working or maybe it’s safe to say it’s over reacting. I am sick for a month or more for colds my husband has for only a week. I have recently been tested with low DHEA, Low cortisal, normal TSH and Free T4 and reverse T3, but LOW FREE T3 and low feritan and low (MCH) mean corpuscle hemoglobin. I’m starting to wonder after reading this article if I might be suffering from an autoimmune disease. Any suggestions on labs my doctor should run. Feel free to email. [email protected]

    • Faith says

      Hi Kimberly, and welcome.

      First of all, I am sorry that you are feeling so unwell. As well, I am no stranger to having “mystery” things going wrong with very little answers. Although I do not know all the definitive tests you should consider, I am aware of some and am happy to share what I know.

      Low T3 when all other thyroid tests are normal, in my view, tends to suggest that the body is down-regulating itself for some reason, often illness. Constant fatigue also suggests some kind of low-grade illness.

      One question I have, is have you had any viral-oriented vaccines as an adult? If so, sometimes they cause a low grade viral infection…and used to be thought of as a cause of Chronic Fatigue Syndrome.

      Many things can contribute to weight gain and retention, as I have come to find out. Low Epinephrine (as shown by Pharamsan’s test); Low Taurine (same test). And I know there are other things that cause hair loss, other than thyroid, but unfortunately cannot remember them, sorry.

      To test for immune activity, at least for what kind you are having:
      * CBC w/ Differential (this will count your white blood cells and see which are more active).

      Another test you might think of is a:
      * Blood Smear (I am not exactly sure what they are supposed to test, but mine came back with viral activity)

      As well, I recommend:
      * Epstein Barr Virus (EBV) exposure test (often results in low grade viral activity)

      To test for the possibility of autoimmune, I suggest these:
      * ANA/FANA (this tests for antibodies to the nucleus of your cells), if positive then you can get further testing.
      * RA Factor (this tests to see if you have rheumatoid arthritis).
      * C-Reactive Protein or CRP & SED Rate (these two test for inflammation which is common to autoimmune).

      I do not know all the immune tests, but two places to start are:
      * C3a & C4a (C3a is a lupus marker…C4a is a Lyme or mold marker).

      Acne may be zinc, so I recommend a:
      * Zinc test

      Basic Panel Tests you may find worthwhile:
      * Urine Amino Acid or UAA test
      * Organic Acid Test or OAT
      * Pharmasan’s Neurotransmitter Test w/ all the extras
      (these will give you a very good understanding of what is off in your body, imo)

      Tests you’d have to pay for, but may be helpful:
      * 23andMe.com’s Genetic Test $99 (this has been, along with the basic panels, the BEST revealer of mystery issues I have found ever).
      * Igenex Lyme Test under $300 (the other screening test has only a 35% of picking up confirmed cases)
      * Comprehensive Stool Sample $500 (one that shows you what you are digesting, enzyme, parasites, fungus, viral, bacterial, etc.)
      * Comprehensive Nutrient Testing
      * Comprehensive Nutrients You Make Testing

      Hope that helps. :)
      PS…the website that will give you an idea of what the panels and genetic test reveal in how one is making and unmaking nutrients is here: http://www.heartfixer.com/AMRI-Nutrigenomics.htm

  51. Karen says

    Chris Kresser has some really good articles (ebooks) on his website that many here might find interesting. You’ll have to register, but it’s free.

    http://my.chriskresser.com/wp-content/uploads/membership-files/ebooks/Thyroid%20Disorders.pdf

    Also, if you search on Youtube for Loren Cordain and a video names “Hyperinsulinemia”, some people may find answers to their health issues in these two sources.

    Dr. Kesser also has a lot of good videos on YouTube.

    Karen

    • Faith says

      Karen,

      For what it is worth, and with all due respect, I get that it is really difficult to 1) have a belief that you really, really believe in…and 2) have someone essentially say that that belief is wrong.

      The fact is that all the cells in the body (every last one of them), in one way or another (which is what those studies are essentially saying)…whether directly or indirectly, need ALL the essential nutrients in at least the quantities set out by the government…without which the body will, in one way or another, begin to break down. Or, better put, as the body is not getting the nutrition (all nutrition, not just iron) it needs, the body will down-regulate itself…and one of the prime ways it does so is via (not the thyroid, but) via the liver…by increasing RT3 and decreasing T3. It would do the same if you withhold protein, carbs, fats, even calories.

      That said, taking iron, alone and to its exclusion, will not magically make one convert thyroid hormone better…or produce thyroid hormone better.

      What I am countering, and will continue to counter until they start getting it right, is the false internet advice that if you are having trouble with the thyroid that you must take ( and test) iron or you will never get your thyroid right. This is false on it’s face…even with the linked studies you provided…the truth is, you must take a multivitamin and/or otherwise make sure that you are not def in ANY essential nutrients if you want your body not-to down regulate itself.

      That said, if you want to argue it, do so by showing exactly where in the biological pathway that iron molecules or atoms are used in the creation of (thyroid) or conversion of (liver) thyroid hormone. Is it used in the hypothalamus’s creation of Thytropin Releasing Hormone, or the pituitary’s Thyroid Stimulating Hormone? We know it is not used in the thyroid hormone itself, those are 1 thyroid hormone molecule and either three or four iodine atoms. It wouldn’t matter if it was used by Thyroid Binding Protein because only unbound thyroid hormone is usable. Nor does it appear to chemically be in the enzyme Tetraiodthyronine 5′ deiodinase which is what liberates an atom of iodine off of T4. Is it chemically within the enzyme Thyroid Peroxidase? Or Thyroglobulin which attaches the iodine onto the molecule of thyroid? And if so, then wouldn’t def then create a complete failure to make any thyroid hormone and super high TSH’s?? Maybe in the receptors??? No where in the pathway can I find it, and I have looked.

      Again, the point of the studies, which are mis-read or mis-nderstood by those wanting very much to create some kind of connection…the point being, if one is def in nutrition…one’s body down-regulates itself…and, it does so by creating more RT3 and less T3 so as to conserve what little nutrients one has…not because it needs it.

      Hope that clarifies.

    • Faith says

      Karen,

      The fact is that all the cells in the body (every last one of them), in one way or another (which is what those studies are essentially saying)…whether directly or indirectly, need ALL the essential nutrients in at least the quantities set out by the government…without which the body will, in one way or another, begin to break down. Or, better put, as the body is not getting the nutrition (all nutrition, not just iron) it needs, the body will down-regulate itself…and one of the prime ways it does so is via (not the thyroid, but) via the liver…by increasing RT3 and decreasing T3. It would do the same if you withhold protein, carbs, fats, even calories.

      That said, taking iron, alone and to its exclusion, will not magically make one convert thyroid hormone better…or produce thyroid hormone better.

      What I am countering, and will continue to counter until they start getting it right, is the false internet advice that if you are having trouble with the thyroid that you must take ( and test) iron or you will never get your thyroid right. This is false on it’s face…even with the linked studies you provided…the truth is, you must take a multivitamin and/or otherwise make sure that you are not def in ANY essential nutrients if you want your body not-to down regulate itself.

      That said, if you want to argue it, do so by showing exactly where in the biological pathway that iron molecules or atoms are used in the creation of (thyroid) or conversion of (liver) thyroid hormone. Is it used in the hypothalamus’s creation of Thytropin Releasing Hormone, or the pituitary’s Thyroid Stimulating Hormone? We know it is not used in the thyroid hormone itself, those are 1 thyroid hormone molecule and either three or four iodine atoms. It wouldn’t matter if it was used by Thyroid Binding Protein because only unbound thyroid hormone is usable. Nor does it appear to chemically be in the enzyme Tetraiodthyronine 5′ deiodinase which is what liberates an atom of iodine off of T4. Is it chemically within the enzyme Thyroid Peroxidase? Or Thyroglobulin which attaches the iodine onto the molecule of thyroid? And if so, then wouldn’t def then create a complete failure to make any thyroid hormone and super high TSH’s?? Maybe in the receptors??? No where in the pathway can I find it, and I have looked.

      Again, the point of the studies, which are mis-read or mis-understood by those wanting very much to create some kind of connection…the point being, if one is def in nutrition…one’s body down-regulates itself…and, it does so in the liver by creating more RT3 and less T3 so as to conserve what little nutrients one has…not because it (the thyroid, the hormone, or the liver) needs iron to do it.

      Hope that clarifies.

  52. Karen says

    Faith,

    You keep saying over and over that there is no link between adrenals and thyroid. But, that simply is not true. There are plenty of studies to show that cortisol is intimately involved in the 5′-deiodinase activity. In addition, insulin can also inhibits T4 to T3 conversion. These two things make it very attractive to look at a higher fat, very low starch/sugar diet such as the Paleo or ketogenic diet, used therapeutically to straighten out glucose metabolism, which would also help to correct thyroid conversion issues.

    Here is but one study of the affects of cortisol and insulin on thyroid conversion (there are others as well):

    Inhibition of thyroxine 5′-deiodination type II in cultured human placental cells by cortisol, insulin, 3′,5′-cyclic adenosine monophosphate, and butyrate ☆

    Jairo T. Hidala, b, Michael M. KaplanCorresponding author

    • Faith says

      Karen,

      With all due respect…cortisol, although produced by the adrenals, is the NORMAL thing the adrenals produce when you feel emotional stress. Adrenal fatigue is when you do not produce cortisol because it is too worn out to…and so instead produce adrenaline to deal with daily stresses. Adrenaline is NOT connected to thyroid conversion.

      Furthermore…you are talking about conversion…NOT thyroid function. Conversion happens primarily in the liver. So you are truly connecting emotional stress to liver function.

      The things produced by the adrenals do NOT communicate to either the thyroid, nor to the pituitary or hypothalamus’s control of the thyroid. Hence…there is NO biological connection whatsoever between adrenal function and thyroid function. Sorry, but that is just the facts.

      IF, for whatever reason, someone has both a problem with the adrenals and the thyroid (proper, not made up)…then the hypothalamus or pituitary are to blame as they control both.

      In addition, what the studies say is… too much cortisol (from too much emotional stress) affects enzyme action which is entirely different from gland function. What you need is to 1) reduce stress…and 2) figure out how to fix the enzyme issue. To date, as far as I can tell…no one is testing the enzyme, or the gene that codes the enzyme, or has a treatment…so, what you are left with is taking up yoga and meditating and other lifestyle changes to reduce stress. If you know of a fix for the enzyme function, please share.

      Hope that helps clarify.

  53. michele p says

    so today i didn’t take any t3 an my temperature was over 99.0… normally its around 98.2-98.4.
    does that mean i need the t3 or not because it was a rough day for me anxiety wise and for no real reason! blurred vision and some breathing issues.
    i was only back on t3 since friday, so 3 days.

    thanks for your insight faith!

    hugs

    • Faith says

      Hi Michele,

      You are completely welcome.

      However, I don’t know what to tell you…you do not dose T3 or thyroid based on temp.

      Temps over 98.6 are a fever…meaning, an immune response, not low or high thyroid. The hypothalamus controls your body’s core temp…and raises it when more white blood cells are needed to fight an infection because white blood cells do better at higher temps. Sounds to me like you are sick. When one is sick, even slightly, this raises RT3 and lowers T3…this is a NORMAL body response to illness, and will correct itself when the illness resolves. Esp per the article above.

      Anxiety is caused by a reduction in serotinin…likely caused are exacerbated by one of the supplements you are taking.

      Again, my best reccommendation is getting the lab panels and possibly the genetic test. In particular Pharmasan’s Neurotransmitter test with all the bells and whistles. This will tell you better what is going on for you.

      Other than that, go back and look critically (and objectively) at what you have been doing differently…as that is the likely causation, even if you may not know why. Just because someone says something is a good idea (Wilson’s) does not mean that it really is a good idea. The key is trying it and seeing how it works…and being willing to admit when something isn’t working right.

      That said, and I have said this many times, and no disrepect to the well meaning practitioners…but I think it is a dangerous practice to give thyroid hormone to people with perfectly fine thyroid function. That is just my opinion…and beyond the knowledge I have of why it is not a good idea…person after person, like you, reports problems.

      It can be very hard to love an idea or belief and have to concede that it may not have been a good idea after all. Again, that is just my opinion.

      Maybe someone has a better answer for you?

  54. Michele P says

    Hi Faith!
    You are soo wonderful to post all of this! I am going to look into all of this.
    You mentioned when someone is on t3 and they have their numbers if their numbers didn’t go up then their bodies liver is working and they don’t need t3.
    but if their numbers go up then they need it, correct?
    well when i was on wilson’s temp i had my thyroid checked and my t3 was very high! like 5.4.
    so would that be a good indicator that i needed t3?
    also i meat rt3 but typed t3 when i was referring to you didn’t believe in rt3 as an issue,etc.
    i have a ft3 & rt3 ratio issue. so that is why we were going to have me on t3 only.

    i am going to read more about how the thyroid works! thanks for the suggestion!

    As for the paleo diet, i just started it this saturday. so wouldn’t of affectd my numbers.

    if i have a hypothalamus issue how do they fix that?
    or a liver issue how would you fix that.

    i tried 5-htp for seretonin and it did help me sleep but it made my jaw hurt from clenching my teeth at night. not sure why it would do that!

    all my hormones are on the low side so i’m working on healing my gut b/c our gut calls the shots on a lot of things.

    i only took t3 this morning and didn’t take anymore. felt a little better but not 100%.

    I’m wondering if i should try the t4 & t3 again. or just not take anything!

    thank you!
    M

  55. Faith says

    Hi Michele,

    First of all, and for what it’s worth, I do not endorse either the Wilson’s Protocol or the Paleo Diet, per se. I am not particularly opposed to either, just that no one person has an absolute answer for anyone…so these things must be taken lightly, as suggestions rather than absolutes. And, as you say, you are doing these things AND you are still having problems…or, rather, you are doing these things AND you are having more problems…and that, to me, is worth acknowledging and taking seriously…as well as respecting and honoring as we listen to and honor what our bodies are telling us. To me, those things (Wilson/Paleo) are just someone’s ideas of something that might work…and they might work for some people…but then we take those things and try to make them work, sort of like putting on a sweater that doesn’t really fit and trying to make it fit anyways…no matter how we stretch and pull, we just can’t get the sweater to fit. So we have to acknowledge (eventually) that sometimes, it just doesn’t fit. Someone once asked me, and I find it fitting, “how long do I have to do something that doesn’t work before I realize it doesn’t work?” Even though what we tend to do is keep trying to make it work, sometimes we just have to acknowledge that it just doesn’t work.

    Maybe a misunderstanding, I don’t have a problem with T3…I said there is no RT3 ratio. T3 is what we use. I have no thyroid and am on T3 only, and have none of the problems people have surmised one would have on T3 only (such as the notion that only T4 crosses into the brain). That said, T3 is not without its own dangers…but then ALL thyroid hormone replacements have their issues (none of them are free of issues). Nature is always the best option (meaning the hormone we actually make), imo.

    Low serotonin is not depression, some depression meds can lower serotonin levels too much and the result is anxiety (low serotonin = anxiety)…but that is not the issue I was referring to. I was taking about possible genetic mutations being affected by what you are doing (sups you are taking) inadvertently causing low serotonin which then results in your anxiety. The MAOA gene in particular which turns tryptophan into serotonin…which I believe comes from turkey meat…but, you would only know this if you did either the genetic testing or the neurotransmitter test or both (or simply take it on faith). http://www.heartfixer.com/AMRI-Nutrigenomics.htm it is in cycle 2 at the bottom. And this in particular, http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MAO A: Monoamine Oxidase A (ugg, link not working)…what I was meaning was a possible over-activation of the MAOA (via gene defect) causing a large breakdown in serotonin and creating your anxiety. It was just a thought.

    Regarding your low iron, you might consider liver? If you use thin slices and over cook it with onions and hot sauce it is not so bad. Or liver powder in capsules? That said, iron is NOT needed for thyroid conversion…and that IS a fallacy perpetuated on the internet. Low iron is often the result of underlying disease. The big problem I have with the internet stuff is it keeps people trying stuff after stuff and discourages people from looking for the underlying cause…thus potentially allowing disease progression. Many underlying diseases start off slowly and quietly and little things start going subtly wrong before big things go wrong and people become aware that something is wrong. One thing I love about Chris’s article here is that he acknowledges that once the underlying problem is addressed, the thyroid corrects itself. In other words, the thyroid numbers are a symptom…not the issue itself.

    While I would never tell someone to not do what their doctor/s says (and I always do what mine say, even when I suspect that they are wrong), however, I do advocate going in eyes wide open. But the problem I see with the progressive type doctors is that they scan the internet (which we all want them to do), but then they see what people are wanting and just do that (which many are glad they do)…rather than see what people are doing and add their medical knowledge as to whether or not that is a good idea (which we actually really need them to do). What seems absent is the adding the medical expertise and knowledge to what we think up to try. Frankly, I don’t know much about the Wilson thing, but your comment about upping T3 makes me eek a little as this is similar to what the RT3 people say (also not-doctors). They believe that while too much RT3 is present the T3 cannot get in the receptors…so they advocate high doses of T3 until the RT3 clears. One woman in the group doing the high doses of T3 reported heart palps (a usual sign of too much T3) and they told her to ignore it…she had a heart attack. As I say, this false information (while it empowers people) is not benign…but has the potential to seriously harm people. Something that I also think warrants acknowledging and honoring.

    Realize that these people who advocate this stuff on the internet are NOT doctors…and that few doctors (except the progressive ones who give patients what they want) endorse this stuff. As for myself, so much of the internet stuff made me sick (and it sounds like it is making you worse too), that I had to take it upon myself to educate myself on how the thyroid system works from start to finish.

    Your body temp is 100% regulated by your hypothalamus that has nothing to do with your thyroid or adrenals (other than it controls them)…which invalidates the Wilson thing, imo. Inflammation in the hypothalamus will cause the hypothalamus to re-set the body’s core temp lower (like it will set the body’s core temp high when one is fighting an infection). There are reasons behind that, but mostly, no one cares to look that deep…but fixing it may require looking that deep. The thing is, if the hypothalamus is the problem…you can try to fix the thyroid (and adrenals) until the cows come home, but nothing will resolve until the hypothalamus is addressed. Like a dog chasing its tail and never catching it, or a hamster on a wheel. In my opinion, it takes looking at the whole system, start to finish, to begin realizing why stuff (like what you are doing) is not working.

    As I say, and will always say, YOUR numbers are unique to you…and the only way to tell what your personal numbers are is by how you feel. Your doctor thinks TSH should be in the low end (which, with all due respect, is just an opinion and not a fact), which may be ideal in theory…but maybe isn’t for you. Before my thyroid was removed, my TSH was 2.1…and that seems to be my personal ideal. The TSH is just the chemical request of your pituitary asking for thyroid hormone…anything in the normal range is fine and it fluctuates throughout the day. Too low suggests you are getting too much and it wants less, and too high says it wants more…TSH numbers are pretty accurate tells unless your pituitary is not functioning well, or your hypothalamus, like mine that is all over the place from less than zero to higher than 17 and having no bearing on my actual hormone numbers. If doctors dx’d me or adjusted my thyroid hormone based on my TSH, they’d have killed me. In my opinion, treating a healthy thyroid with thyroid hormone and not looking for or ignoring why the low T3 numbers and only treating those numbers, is like playing whack a mole. Low T3 (with normal T4 and TSH) is caused by a failure to convert…the failure to convert has to do with the enzyme that converts it…in the liver. It is also a perfectly normal thing the body does when something else is going wrong. We can try to augment those numbers, but unless the liver is failing it will not work…and, if/when the underlying cause is found corrected then the hypothalamus/pituitary/thyroid will correct itself.

    The inherent problem with taking thyroid hormone when you have a functioning thyroid (even if slightly low numbers in some people’s opinion), is that your thyroid gland will make less. The more you take, the less it makes. Like using a wheelchair when you can walk, it eventually atrophies the gland…then requiring you to be on thyroid hormone for life (with all its wonderful flaws). This is one of the more serious issues that the progressive doctors do not consider when giving people what they think people want and ignore their medical knowledge. Personally, I like going into things eyes wide open…and I want to know all the dangers to things they want to try so I can make informed choices. I am all for people trying thyroid hormone…and then re-testing and SEE, did the T3 numbers go up (which would warrant staying on it), or did they stay the same (which would suggest not to be on it). If they stay the same, your liver is functioning well and getting rid of the excess…or your thyroid turned down its function and is making less to compensate.

    There is no RT3/T3 ratio other than what a human being, such as you or I, made up. You don’t need RT3 at all. RT3 is ONLY a problem if it goes above the range because it blocks the receptors. However, if you want more RT3 you can do so by starving yourself or getting sick…although I cannot imagine why you would want to do so as all RT3 does is slows your metabolism.

    The problem of trying to fit ourselves into made up ideals with hormone supplements is that you will never do it…it is not-possible (although it will not stop people from trying). Your body is self-regulating…and if it is down-regulating your T3 conversion then something else is wrong (and the down regulation is a symptom that something else is wrong)…and THAT warrants further investigation, imo. Poor conversion of T4 to T3 does not happen in isolation, it happens because of something…and as long as that something exists, it will keep happening. The kindest thing you could do for yourself is to find the something that is causing the low T3, in my opinion.

    As I said before, one of two things will happen when you take T3…your level will either increase suggesting one of two things, you needed it and were truly failing to make it or your liver is not working well…the other thing that would happen is that your levels would stay the same suggesting your body wants your levels lower. If your T3 levels go too high, then your liver is not doing its job.

    The very best thing I have found for constipation is Magnesium Oxide (sold as NatureMade Magnesium). These are pills. Walgreens sells a horribly sour magnesium drink, to me the pills seem easier.

    Also, I am only one person…just like you shouldn’t take the advice on any website or book as an absolute, nor should you take what I say that way. I mean only to educate…and to give a side of things that are missing so that one can get a clearer picture. My own journey is filled with things I tried and that failed…eventually I got fed up with spending money, time out of my life being worse, and just simply getting worse…and so I took it upon myself to educate myself and see if I could figure it out or see something others had missed. I started with the thyroid system from start to finish, from the hypothalamus to the receptors. I used medical text books, however, the wikis are a fair starting point too…they are pretty good and detailed. Up until I did this, no one in any of the internet groups knew that conversion happened in the liver…no one, I couldn’t believe it. Of course, we all have our threshold of what we need to go through before we can accept that the information that we thought we knew was not true, for me that was it…how could they hope to help people convert thyroid hormone if they didn’t even know where in the body we did that?? So I am simply sharing with you the things I have learned along the way. Sometimes people don’t like what I have to say because they like to believe what they believe…even if it is making them worse. All I can say is, if it is making you worse: 1) tell your doctor; 2) acknowledge that and honor what your body is telling you…and then 3) accept that those sources of advice may not know, understand that they are just people with theories, have compassion because even if they may be hurting people they are just trying to help.

    Oh…and as thyroid helps regulate protein, carbohydrate, and fat metabolism…maybe why they were lower in the first place is the Paleo diet??? Just a thought…maybe eating less of = needing less of??

    Lastly, I assumed your anxiety was chemical and not caused by you feeling stressed…why I associated sups with inadvertent harm per the complications of how we make and unmake things…hence the genetics. There is no hard fast answer to what is going wrong for you or why the sups may be harming you…the easiest answer is that you are changing the dose daily. Thyroid is something your body learns to count on you taking at regular times…when you change that, it may not be prepared to handle that change…esp, suddenly lowering your dose or increasing it. While I don’t know, offhand, of a connection of thyroid and anxiety…I do know that putting your body chemically in danger will cause a chemical response of anxiety, I think it is an inborn response mechanism…so theoretically, sudden low thyroid could cause the body to alert you with anxiety…just a stretch.

    Hope that helps. :)

  56. Michele P says

    thank you Faith.
    I wasn’t experiencing any leg pain before i started the t3 and my anxiety wasn’t too bad until i took the t3 only.
    however i was able to handle 2 1/2 cycles of the wilson’s temp syndrome which is striaght t3 cycled up to 75mcg 2x a day then cycled down.
    with the 1st cyle once i was off it for 3 days i felt amazing then my energy dropped and i had some anxity.

    about your 1st post, i have found it very hard to lose weight,even though i follow the Paleo diet which stays away from starchy carbs and i exercise 4-5x per wee.
    i have had dry skin, hair is falling out more than normal, i find it hard to use the bathroon even though i take miralax 2 x a day and linzes to help me go, lips dry, water retention, sometimes hard to fall asleep.
    i do not have any depression just anxiety sometimes.

    so i have lots of symptoms pointing to hypo and b/c of the ratio of Ft3 and Rt3 I have learned and my dr says i should be on t3 only.
    but then you say there is no such thing as t3 issues.
    so do you think going on t4 & t3 would help bring my tsh even lower to 1.? my doctor says he likes the # to be around 1.

    my iron is low, i’m eating more red meats now to increase the number.
    low ferritin can cause a problem in the conversion of t4 to t3.

    in the past i used to take xanax for 13+ for anxiety but it only made me sicker. so i slowly came off it and have been of it for 8 months. i feel much better now and i know i have a thyroid issue b/c while on the wilson temperatur syndome protocol there where times i felt amazing with NO anxiety and it showed me that my anxiety is from a hormone imbalance.

    Thank u for carin and shaing ur thoughts on this.

  57. Michele P says

    Hell, I wanted to add to my last post, on Friday i took 2.5mcg of t3 3x and spaced each dose out by 5 hours. I did ok but not 100%, so yesterday i did the same but 1 hr before i too my 2nd dose i took my iron pill and then when took my t3 i started to have some anxiety. i had some anxiety after i took my 3rd t3 dose too plus my back was really achey for no reason..
    and then this morning i woke up and my leg hurt with pain down to my foot… I wasn’t sure whether i needed to increase my t3 dose or not take it at all.
    So I decided to take 5mcg of t3 and it helped but i still have a little leg pain and yesterday i had some ligering breathing issues from anxiety. I have those a little today too.
    my blood pressure this morning was only 95/59 and my pulse was 59.
    my bp is usually low like 100/60 and my pulse stays around 60.

    do you think i’m on too little t3 and that why i’m more hypo right now?
    i was going to wait the 5 hrs for my next t3 dose and take 5mcg again. i also was going to wait til tonight to take my iron pill, my dr said to take it 2x a day but i don’t want any anxiety!

    i have found that i cannot take any supplements or i’ll get internal anxiety,do you know why that would be from all this?

    thanks for your help!
    M

    • Faith says

      Hi Michele,

      For what it’s worth, I also get increased pain when my thyroid is too low.

      Regarding the supplements and increased anxiety, like most people I used to think that supplements were safe because they were like food (right?). However, as I learn about the genetics and how the body works, I learn that supplements are not-safe in the ways we thought and could do far more harm than we thought. Not that I am saying that they are bad or anything, just saying that we need to know much more about how our own bodies work before messing with it.

      To explain, one of the more commonly known genetic mutations is the MTHFR (yeah, no joke, that’s its acronym)…it codes the creation of the enzyme (also called MTHFR) whose sole job is to add a methyl group onto folate…in what is known as the methyl cycle. The hypothesis (and it is really just a hypothesis) is that if you have this defect then you should take methylated folate. However, a bulk majority of people who do take methyl-folate get worse. One of the so-called experts in this then starts saying that some people have problems with extra methyl…duh. But likewise, taking folate could also harm people who may have this defect and not even know it.

      Because eight of the things my doctor tried (that the expert she likes said we need to do) made me much worse, I finally said that we should just test the things that the report said could be affected and see what, if anything, was actually affected. My hypothesis is that anyone with a double mutation in the MTHFR gene would either be dead by middle age…or, another gene/enzyme does the job that they just don’t know about yet. What I found with the new labs was that I was not making an amino acid called taurine very well…and nothing would have suggested that and thus we wouldn’t have known without that lab work. So, for me, taking taurine has gone further to improve my health than anything else we have tried.

      The genetic stuff is under the category of “personal genomics” and a good starter point is testing by 23andMe.com which will give you, for $99, an over 14,000 pages of your genetic code. You then run the raw data through software like Genetic Genie (free) or Livewello ($20) which will give you a report of things that are affected for you personally. After that, while I would like to say that the care is more personal because it is based on that, it is not quite yet because it is more based on what the so-called experts think you should do with certain defects. And as I say, what the experts said just made me worse…which is why I recommend using the reports to generate a list of things to test as see what, if anything, in you is truly being affected.

      I know I have been on this site all on about 23andMe, and while I still think it is a good place to start (cost effective)…I have now learned that they only give you a small part of your whole genome. It is (very) cost prohibitive (thousands of dollars) to get one’s whole genome tested, much less interpreted…but for the very sick may be well worth it. More detailed testing, as far as I know, is not on the radar of any of the doctors or practitioners that I have heard of who work on the personal gemonics (yet). So still, 23andMe is a good place to start as long as one takes it in context that it is not that complete. The funny thing about knowledge, the more you learn the more you start realizing that there is more to know.

      Low serotonin can cause anxiety…and serotonin is part of the things affected by the methyl cycle and genetic defects, in other words the way we make and unmake things in the body. Defects can either increase production or decrease it…and providing the defected area with the building tools, esp if it creates over-production, can definitely have the effect of lowering serotonin too much and creating anxiety. So can certain medications.

      For you, with your increased muscle pain and anxiety caused by all these changes in what you are taking, I highly recommend getting a Neurotransmitter test by Pharmasan Labs…and check for two things, but most especially the gaba-glutamate neurotransmitters. Glutamate and gaba make each other as well as work together. They are like binary code, glutamate turns on muscle activity (tightening), and gaba turns it off. My doctor says that these two things should be in balance or the same on the test. Too much glutamate can lead to a lot of stiffness or minimal stiffness that increases pain. The other thing would be the serotonin/dopamine-norepinephrine-epinephrine complex. My doctor added taurine onto that test, not sure you need to, but in hindsight I wish I had gotten the complete, everything they can test test from them as it has been one of the more revealing tests we did. I also found out that I don’t make adrenaline very well (sort of the opposite of what you are experiencing)…and any stress just makes me want to go to sleep.

      I really hope that helps. Hang in there, and sorry my other post didn’t go through the other day.

      PS: here is a link to some beginner stuff into the methyl cycle and what some doctors are doing about it: http://www.heartfixer.com/AMRI-Nutrigenomics.htm
      You will see how quickly complicated all this stuff gets.

      • Honora says

        Hey Faith, thanks for the info about Livewello. I checked them out and they’re very helpful for understanding some of the data reports I got from MTHFRSupport (using 23andme data). Their report is the same as MTHFRSupports but there’s a bit more information on it regarding the interpretation of the results.

      • Fern says

        Faith I also have one defect in one copy of one of the MTHFR SNPs. I joined a discussion group about it on 23andme, but I didn’t think much about it until I read about how T4 is converted to T3 in the liver, which relies a lot on methylation and methylated enzymes, etc.

        I had also heard about how Carnitine is depleted by hyperthyroidism and in reading about that, I came across information about the genetic condition of Primary Carnitine Deficiency. It is regulated by the SLC22A5 gene, so I searched my whole genome at 23andme for it and found my gene seems to have a defect compared to the genes of my husband and his uncle. I know if you got a double whammy of the defective genes in the past, it meant death very soon after birth, but now they test for the deficiency, so perhaps they can treat the babies for it, and will test the mothers to see if they are carriers and might have risk for less quality Carnitine to be used in the body. I also know two of five children born to my paternal grandmother died soon after birth.

        • Faith says

          Hi Fern, and sorry that you are not feeling very well these days. :(

          That is really interesting…sorry about the deaths.

          Regarding the conversion in the liver…once I found out about it, it surprised me that the well revered thyroid sites seemed oblivious to it.

          Regarding the geneomic side of medical care…if the supplements my doctor kept trying didn’t make me so sick, I would never have looked deeper. But applying some logic, if MTHFR was the only gene/enzyme that added a methyl group to folate…then people with a double defect would be dead long before middle age…or…some other gene/enzyme also adds a methyl group to folate that they don’t know about (yet). Same with all the other genes/enzymes.

          Definitely, testing for a person’s true status of these things is more helpful imho than just doing the genetic test and assuming.

          Thanks for sharing this. :)

          Hang in there…hope you feel better soon.

          • Fern says

            As I said, I have only one copy of the MTHFR SNP that is bad. I’m sure the good copy keeps me at least half alive. And Methylation isn’t just about activating folate — there are many other processes in the body that require it, including at least 3 steps in the pathway of T4 to T3 conversion. That most of this conversion happens in the liver is only significant, imo, if there are other things affecting the liver that affect the conversion process as well. There is a small percentage of T3 that is produced in the thyroid, and small percentages in the kidneys and elsewhere.

            As to dying before passing middle age, I would estimate that I have had at least 3 brushes with death in the last 25 years. I am 65 now.

            • Faith says

              Hi Fern,

              You and me both…and yes, i am aware of the complexities of the various cycles.

              What I was referring to is just adding simple logic to the hypotheses out there…and that being, those with double mutations (which many have), would either be dead by now…or some other gene/enzyme is adding a methyl group onto folate.

              It was that bit of logic that caused me to ask my dr to test all the things the report said were affected to see what, if anything, was affected (esp per the double mutations I had)…and nothing was. I only found out that I was not making taurine or adrenaline very well. Supping taurine has gone a long way to improve my health.

              Sometimes it takes thinking outside the boxes given to us to find answers.

              Hang in there.

        • says

          You can’t just go through the raw data at 23andMe and if you have an SNP that differs from someone else, conclude it’s a functional mutation. A lot of the time a mutated SNP does not do anything, because the genetic code is read as a combination of three consecutive “letters” (amino acids) and some of these three-letter combinations are synonymous. Also, even if the mutation does mean that a different amino acid is coded, it may not have any effect on the function of the final protein.

          If you look at the genetic code of any larger gene between two different individuals, there are likely to be some differences. So it’s far easy to conclude you have a “mutated XYZ gene”. It’s not a good idea to look at the raw data unless you’re looking for some specific SNP known to cause problems.

  58. Michele says

    Hello, it’s Michele, I had posted a while ago.. well I am a 37 yr old female with 2 young boys :-)
    I got my blood work back and here are my levels and I was hopeing you could make some sense of them.

    TSH 1.9 reference range (1.5-2.5)
    t4 total: 5.4 (4.5-12.0)
    t4 Free: .9 (.8-1.8)
    T3 free: 2.3 (2.3-4.2)
    thyroglobulin antibodies: <20 (<20)
    RT3 19 (8-25) If you look at the ratio of Free t3 and my RT3, it does show I have a Rt3 issue bc 2.3/19 = .12 and if should be .20 of higher, correct?
    My doctor wants me on t4 and t3 b/c both are low. he wants to start me on Slow Release t4 33.3 & t3 10.1 for 15 days and then increase to t4 50.4 & t3 15.2.
    I'm worried b/c of the Rt3 issue… but I have higher tsh and low everything else. Let me know what you think!

    Progesterone: .7 (Follicular phase < or = 2.3 and Luteal phase 3.0 – 31.4) I'm currently on 25 mg pill and my Doctor wants to increase it to 75mg pill each night.
    Testosterone total: 15 ( 2-45)
    Testosterone Free: 1.6 (.1-6.4) My doctor wants me on 1mg per night to raise this #.
    They had to redraw my blood for estrogen b/c the nurse asked for it but they didn't give it to her. But it's always been on the low side! So he said he may want to put me on that too.

    Iron:
    Total: 139 (40-175)
    Iron Binding: 353 (205-450)
    %saturation: 39 (15-50)
    Ferritin: 16 (10-154) I've learned that if this number is low then it may be why I have a rt3 issue.
    So my doctor wants me on an iron supplement 2 x a day.

    My DHEA was lower then ideal too so he wants me on 10mg supplement of this. how do you feel about that?

    Here is something else that is confusing: one doctor checked my levels by blood and this is what the results were.. my cortisol was normal by the way, both PM and AM.

    And then my other doctor tested them by a 12 hr urine sample and it showed my progesterone and estrogen were high and my cortisol was high from 3pm until 3am.. but my blood levels show normal.
    I don't understand why these test would be so different!

    Thank you for your help in this!
    M

    • Faith says

      Hi Michele,

      I tried to post this earlier, but it never showed up…so re-posting.

      Your doctor seems pretty progressive (what most would consider kind) at offering you thyroid hormone…and, indeed, your T4 and T3 levels are at the low end of the normal range. That said, your TSH is also at the LOW end of the range. The TSH is your pituitary requesting thyroid hormone…and it is NOT requesting more. If your TSH was over range high, then this would suggest that your body wants more that it is getting and your thyroid is failing to produce.

      That said, SOME people in your shoes would feel better on some thyroid hormone…so it is one of those gray areas where you will have to decide how YOU feel about it.

      (in case anyone forgot, I am one of those with HUGH RT3 issues), the RT3 ratio is fiction (nothing personal to the person who tried to make a name for themselves, but it is utterly made up). First and foremost, you don’t need ANY RT3…RT3 is unusable and it’s only function is to slow your metabolism. When you are sick, your body will make more RT3…this is what makes you feel like all you can do is lay on the couch…trust me, you do not want more RT3. From my own experience, when I take T4, my RT3 rises pretty quickly…the normal ranges on my labs are 90-350, mine sails into the 500’s. When mine gets to be 100 points over range, I collapse (like literally fall down for an hour or so due to energy bottoming out until I have the energy to get up). In my personal opinion, you do not need to be concerned about RT3 in the normal range. If you had chronically elevated RT3, then this would be suggestive that you had some kind of chronic illness going on that if you did not know about should probably look into (or you are starving yourself and your body is attempting to save you by slowing your metabolism down). But no, the ratio is made up by the author of the book (complete, albeit nice sounding, fiction) is not a doctor.

      The rest of the stuff gets into an area where people generally do not like my answer, IF more than one of your endocrine glands is not functioning well…your problem is in your pituitary or hypothalamus which controls them all.

      That said, and as great as it is that you are able to get all these tests and seem to have a very progressive doctor, there is an unfortunate limit to each method of testing. Urine tests only show what your body is excreting…your actual levels in use could be perfectly normal as you only excrete the excess. So even if there is no excess being excreted, you could still have perfectly normal levels in use. Blood tests can only show you what is available…not what you are able to use. For example, they can tell you that you have thyroid hormone available…but they cannot tell you how much is getting in the receptors. It could suggest that your thyroid is working (producing hormone)…but even if it is low, it could just be that you liver is over-tagging it for excretion. So they only give a rough idea of what may be going on at best.

      The big thing is, and this is often overlooked, is how do you feel? Our bodies are extremely good at making what it needs when it needs it…and lab normals are only the average of the people who get blood drawn at that lab (which is really messed up if you think about it), meaning that all the sick and healthy people tested…what their average is, is what they are calling normal…and may not be normal at all. If you have those numbers and feel great and are at a good weight, then this may very well be YOUR normal numbers.

      Oh…and the T4. T4 is a storage hormone that you convert when you need it. Whether in the low end of the range or higher…there is still adequate amount of it IF you needed it. The real number to contend with when you are getting full panels is the FT3, that is the only usable hormone…and that, of all the thyroid numbers, really goes by how you feel. There was a woman in another thyroid group that feels super sick when her T3 is in the middle or upper part of the range (even though the progressive doctors still think it needs to be higher, this is just not true for all people). The problem with higher T3 levels is that it demineralizes bones…and if too high can cause paradoxical weight gain. So again, go by how YOU feel. If you feel fine with it in the lower end of the range, then that is YOUR personal normal.

      Lastly, remember that authors tend to operate on hypothesis and theory…no matter how smart sounding, it is still just an idea. The difficult part that you find out after you walk a few miles in each of those ideas is that they do not help everyone, and even manage to hurt some that follow the ideas that they put out there. In the RT3 group (also non-doctors), they say to take high doses of T3 and told a woman to ignore her heart palps and she had a heart attack. So take everything with a grain of salt…remember that they are just hypothesizes and not fact (esp the RT3 ratio). There is no great science of how to get your numbers just right, because if your body wants them lower, your liver will mark them for deletion and they will stay low. This is why I always advocate for finding out how exactly things work (ie hypothalamus tells pituitary which tells the thyroid, and the thyroid uses x,y,z in exactly what way to make the hormone, which goes where to be converted, and exactly how is it converted, etc) because then fact from fiction becomes increasingly evident (like why your adrenals have no bearing on your thyroid).

      That brings me to the last bit, if/when you try adding hormone…re-check your levels. IF they stay low, your body wants it low. IF they improve…one of two things, you needed more and weren’t able to make it…or, your liver isn’t working well. The hallmark would be, do you feel better or worse on them? Go by how YOU feel, not what others say about the numbers…although, it can be hard to trust one’s self at first.

      Hope that helps. :)

  59. Jennifer says

    Hello, I just got tested for low thyroid levels (TSH, T4, T3) and found that I have normal levels of TSH and T4, but low T3. My doctor didn’t really explain what this meant, but he prescribed me liothyronine, which he described as a T3 substitute.

    I decided to do some research and find out what could be causing my low T3 and found this article. Although I’ve found it very enlightening, I am now very hesitant to take my prescription in case it causes the adverse effects stated. I was hoping you could give me some advice on what steps to take next…and potentially what else I should be getting tested for.

    Any input would be greatly appreciated
    Thank you,
    Jen

    • Faith says

      Hi Jen,

      Liothyronine is T3, which is what you are not making enough of ( http://en.wikipedia.org/wiki/Liothyronine ), and fwiw, I think it is mighty progressive for your doctor to order it for you (that being a good thing).

      Although no one could hope to tell you what to do, my thought would be to take it and see…and retest in a month to 6 weeks from starting it. One of two things will happen…either your T3 level will increase to normal…or, it will stay below normal. IF it increases to normal then it is because your body is failing to convert it and then taking it is warranted. However, IF your levels stay below normal either you are not taking enough…or, your body has set your levels lower…and remember, everyone’s levels are unique to them. The proper levels of T3 are best determined by how you feel…even though some on the internet have an opinion, I have met those who do not feel well when their levels are higher.

      As far as testing the T3 levels, you will want the “Free T3″ test, or “FT3″…that is the active, ready to use, hormone. Total T3 or TT3 tests everything, the protein bound, the free, and reverse T3.

      If your levels stay the same, you will have to choose between increasing your dose and retesting to see or stopping the T3…but that is a very personal choice. Unfortunately, doctors don’t know much on what might cause the body to set their levels lower (assuming lower levels and feeling hypo, rather than lower levels and feeling great). I do know that chronic illness (even if so low grade that you might not realize you have anything) is one cause.

      Personally, I think it is pretty great your doctor is willing to try that (it is generally very hard to get T3 rx’d)…and I think it is worth a try. And, again, it is just my personal opinion that staying on hormone when it is not due to failure to make it (levels do not rise) is probably not the best thing to do…but that is just my opinion.

      Hope that helps.

    • Fern says

      I agree with Faith. The main reason Liothyronine can be scary is if you already have sufficient free T3.

      For me, though, I tried just taking a half a pill first (2.5 mcg) and that seemed like too much so I skipped a day and cut it in 4ths, eventually I was taking 1/4 every other day then once a week. Then I learned to split it in 8ths, and was able to take it every day and build up to a whole pill and beyond to 1 1/2. That seemed incredibly good for me, but my TSH dropped to 0.009, so I had to go to another endocrinologist (#4) who has wanted me to go off the Liothyronine altogether before determining whether I need to increase Levothyroxine (L-T4) (25 mcg). I have been struggling a lot with this since I first decreased to just one pill, then toward 1/2 pill. I couldn’t stand it so I wrote my Endo and told him I was increasing it again by 1/4 pill. I take the half in the morning with breakfast and the quarter in the early afternoon. I will see him again next week.

      In the meantime, I am trying to check out the possibility that I might be carnitine deficient. I had my genome tested at 23andme but I haven’t determined yet whether this gene is abnormal or not.

      I do know that red meat is rich in carnitine, and I have started eating more beef and have felt better since then. I also understand that carnitine is important to the production of TSH which has the job of stimulating the thyroid to produce thyroxine which is converted in the liver to the T3.

      • Faith says

        Hi Fern,

        Interesting your mention of carnitine and the genetics…was wondering what led you to that??? Also, have you had your UAA (urine amino acids) and OAT (organic acids test) done yet? Quest labs does them…I am not sure if carnitine is on them, but it’d be a place to start. Anyhow, hope you are doing well.

        • Fern says

          Right now my new Endo is taking me off the thyroid hormones and I have been struggling a lot to function with daily life. Today is a little better. It is hard to keep up with this site.

          I don’t have my own tests done, and I haven’t even had enough energy to make an appointment with my regular doctor.

          At my last Endo visit, I was told the supplemental carnitine wouldn’t affect the thyroid, but I am too tired to do much, so I just found it and am taking the lowest dose, first at once per day 500 mg, then when Endo #4 made me decrease LT3 to 2.5 mcg, I started taking the a-L-Carnitine twice per day. Eating red meat helps me feel better too, and more able to cope.

          • teancum144 says

            Why would your doctor take you off Cytomel just because your TSH is low? If Cytomel works for you, and you don’t mind being on it for the rest of your life, why do you need TSH? Check out this case study:
            http://www.neuroendocrinology.org/thyroid-hormone-resistance.html
            Also, there is a really good yahoo group called, “Natural Thyroid Hormone Users”. Have you read “Stop the Thyroid Madness”? Here is the website:
            http://www.stopthethyroidmadness.com/things-we-have-learned/

            • Faith says

              TSH is the pituitary requesting thyroid hormone. If it is low (clinically low, below range), this means that you have too much circulating thyroid hormone.

              Too much circulating thyroid hormone is NOT good for you and will cause your bones to demineralize.

              TSH is (providing the pituitary is working correctly) a good way to tell what to do with dosages.

              • teancum144 says

                Faith, your comment: “TSH is (providing the pituitary is working correctly) a good way to tell what to do with dosages.” Is a very general answer to a very complex topic. Did you see the link in my comment below (on 3/26/14 at 8:05 am)? In fact, anyone who suspects they have thyroid problems should read all the topics on the left side of that webpage.

                • Faith says

                  Hi, and well met.

                  Sadly, I think I have traveled a bit deep into the rabbit hole as well…as I am currently dealing with the genetics and defects in my thyroid receptor.

                  For what it is worth, I do not agree with the seeming current belief put forth on many of the sites that taking excess endo hormone is somehow likened to vitamins in which one simply excretes the excess. With endo hormones, in the face of excess, the gland produces less…which I feel is unsafe.

                  :)

              • Fern says

                There are other causes of low TSH besides high thyroid levels.

                I just read about how cortisol can lower TSH.

                • teancum144 says

                  Yes, TSH is produced by the pituitary gland. So, Hypopituitarism is a cause, which is commonly underdiagnosed.

                • teancum144 says

                  Fern, In addition to the yahoo group I mentioned, there is a forum in the “National Academy of Hypothyroidism” that is very helpful.

              • teancum144 says

                Similar to insulin resistance, some tissues of the body can become T3 resistant. Increasing T3 can help overcome this resistance.

                • Faith says

                  For what it’s worth, the lady who writes that site and book is not a doctor…aand many of her ideas that sounded good back when are now outdated (sorry to be the bearer).

                  Just increasing T3 is dangerous. In the RT3 group (where they also recommend high T3 doses not warranted by serum levels (also not doctors), told a woman to ignore the heart palps (a known symptom of too high T3) and she had a heart attack.

                  Realize, that the body is self-regulating…when you take extra hormone your body responds by having the gland make less. Eventually, if you follow that pattern enough, the gland stops making any and atrophies.
                  Endo hormones are NOT like vitamins…you do not simply piss the excess and you can seriously harm your body by doing it.

                  Even in this group, there were a number of people who were given T3 to lose weight and not only got sick, but paradoxially gained weight.

                  Our bodies are just so much more complicated than that.

            • Fern says

              While I think my endo and most endos overreact to a low-TSH lab report, I also want my TSH to be in the normal range. My experience is that Thyrotropin aka TSH is much better at doing its job of stimulating the thyroid than the craziness of needing more supplementation that is hard to get right in the first place. The body, if normal, simply does the best job.

            • Fern says

              I have very little energy to even comment here.

              I looked at the links, but the source and concepts look suspicious to me.

              Sure, it’s a popular concept: “The endocrinologists don’t know anything!” but the complainers know even less.

              I would rather get my information from the scientific journals like: http://www.ncbi.nlm.nih.gov/pubmed/20074584

              Thanks anyway.

              • teancum144 says

                The reason why I like that source is at the bottom of each webpage is the many footnotes with sources, which are often from medical journals and universities.

              • teancum144 says

                Meanwhile, as you say, you have “very little energy to event comment here”. You are free to believe your endo knows what’s best for you while living with miserably low energy.

                • Fern says

                  I believe that the Endos know more about the thyroid than any of the rest of us, but that isn’t really saying much. I believe it is time for a medical breakthrough regarding the thyroid and the treatment of thyroid disorders, but that the whole world will not catch on to the problems unless some of us sufferers put ourselves into the hands of those endocrinologists.

          • Fern says

            I just got lab results:

            TSH range (0.35-4.94) Jan 21st was 0.19, now April 1 at 1.18
            Free T4 (0.8-1.7) was 1.5 now 1.3
            Total T3 (80-200) was 128 now 116

  60. Michele says

    I think there are two Michele with one l here…what are the chances. My symptoms seem to be more of the weight loss and feeling like I had coffee most of the time. I wake in the middle of the night and feel wide awake. Brain fog, pressure behind eyes at time. So many doctors, so little answers. Migraines is the new diagnosis but I didn’t think that weight loss was one of the symptoms.

    • Fern says

      Your symptoms sound primarily like Hyperthyroid, but that could be stress related, too. Even being hypothyroid seems to cause internal stress for me. (I have been both, swinging from one to the other.)

      Have you had your thyroid levels checked? Do you have your own copy of the results? Even if they are in the normal range, it may cause trouble.

      There are also other conditions that can cause thyroid symptoms.

      I suffered for many years without a diagnosis, then at age 60, when my TSH level dropped to 0.01 I was treated for Graves’ disease which was worse for me.

      Now, I suspect I have a defect in the gene that codes for Carnitine which plays an important role in TSH production among other things.

    • Michele says

      Hi Dr. Loscalzo, I wanted to comment on your post with my experience on WTS.
      It has helped to change my life for the better! I used to get bad PSm anxiety 10 days before my period and I don’t get that anymore.
      I have learned that because I’ve responded well to WTS that I have a Rt3 issue. I never thought in a million years I had a thyroid problem, but now I know I do.
      Also while on WTS there would be days that I would feel amazing! Those were the days my temp was at 98.6.
      WTS and the t3 have helped me with my sleep as well! I’ve always had a hard time falling asleep and now I can get right to sleep. It’s soo wonderful!
      Another thing I’ve noticed is my skin isn’t as dry, especially on my heels where it was the driest!
      It helps boost mood and it helps give someone the support they need through this.

      I was on a benzo for 13+ years, started on it for sleep and then I needed more of it b/c of dependency, etc. To make a long story short, in 2010 I decided that the benzo was making things even worse for me and I slowly weaned off of it over 16 months. In the meantime to help with the withdrawals, my doctor put me on remeron to help with appetite and sleep, and anxiety. That was the 1st AD I had ever been on.. I wasn’t depressed but needed the additional support. I was on it for 17 months and when I finally got off of it too, I was 6 months post benzo and after my 1st cycle of WTS I felt I had enough support from the T3 that I stopped the remeron. I’m soo thankful to WTS because it helped me get off that nasty drug remeron, which I had been withdraw ling from for over a year…. I was able to jump off of 3.75mg of liquid remeron and because of WTS I suffered little side effects. I am super sensitive to all meds, etc and to be able to do this was amazing. Before that I was only reducing my dose my 10% each month. My initial dose was only 7.5mg.

      I hope this post helps you decide if using this therapy in your practice is right for your patients!

      My doctor is one of my heros, I love her and am so thankful the Lord led me to her practice!

      I will say though that you have to hold hands with your patients through this b/c it can be tricky, but it’s worth it!
      If you have any questions for me I’d love to help! Just let me know!
      M

    • Faith says

      My thoughts are this (and I share only because I’m probably the only one who’d say it: I think it is dangerous to give thyroid (or any endocrine hormone) to patients with healthy thyroids. My reason being is that it will cause the thyroid to make less and the danger of atrophy is made significant because best as the world has tried, no rx thyroid is as good as what one makes.

      Likewise, if there is an RT3 issue (sign of a chronic underlying illness)…then that should be looked into…rather than just cover it up with T3 and leaving it to worsen, imho.

      As well, and I am probably a bit ahead of the time here…but IF someone has an issue with both the adrenals AND thyroid…then the culprit is the pituitary or hypothalamus. Since the hypothalamus regulates core body temp, my other opinion is that THIS should be checked out.

      Lastly, in a healthy person who’s liver is functioning well…excess T3 will probably be fluhed from the system and thus the desired affect not reached. In those, like the other person posting about hyper symptoms, i think the liver should be checked out…again, just my opinion. As well, excess T3 (hyper state) is dangerous…it causes bones to demineralize, one of the symptoms of too much (although not often mentioned on the internet) is weight GAIN, and feeling sicker than before.

      I say all this not to criticize, but to hopefully give food for thought (which ou may or may not be interested in). Being surrounded these days by sick people, the pattern I notice is that first it is one thing, then another, and then a few months later another. I think that the cause of this is that symptoms are treated…and although one may feel better, the true underlying cause is worsening…and thus the next thing crops up. I know that many doctors don’t think that way…but it’d sure be nice if they did, and I think I can speak for most people with health issues…we’d really like the true issue corrected, even if we are happy at the moment to feel better from symptoms treated. Hope that makes sense.

      Best of luck to you in your practice.

  61. Michele says

    Hi Faith and thank you for getting back to me!
    I do still have my thyroid, thank goodness!
    I was on Wilson’s temperature syndrome and did very well on it.. some of the days I would feel amazing and some of the days I wouldn’t.
    But once I got off it the 2 or 3 x I would start getting very very dry skin, couldn’t fall asleep, and it would case me more constipation.
    You see I already take LInzess 290mg, which is a prescription med that helps people use the bathroom, plus Miralax 2x a day. So there is no reason I shouldn’t go, but when I’m not on t3 I find it harder to go. It feels like my system gets tighter or more stressed when I don’t take t3. But when I do it starts to relax some.
    Does that make sense?

    Today is my 4th day on t3 only, I’ve noticed that today I am tired! I am only on 10 mcg, 4 x a day and 15mg Slow release t3 at night… and maybe I need to increase my morning does already because maybe my body is making less t3 and I need to increase now. what do you think?

    I also suspect that I have higher coritsal levels after around noon because that’s when I start feeling internal anxiety. I meant this always happens! I am also holding more weight around my hips, butt and lowers abs. I’ve always had tight abs and this is a like a layer of fat or water.
    do you think cortisal may be the cause of this? Does t3 mess with cortisal levels? I also crave sweets and junk food which I don’t want to eat b/c of the weight gain.

    About sodium, I am very health conscious! I used to compete in figure shows, just 2 years ago I did my last one. So I watch my sodium intake, etc. So my water retention is not from sodium! it’s from somethine else. When I was on WTS there were days when I would be cyling t3 that my weight went down to 105, my normal weight before all this was always 103. and my peak weight was 112. I’m now 109. I am only 4′ 11″ so 104 would be a perfect weight for me. I know it has a t3 or cotisal link to my weight gain!

    Man I am tired, I could totally go home and go back to sleep!

    Hugs to you and God bless you for helping others!
    M

    • Faith says

      Hi Michele,

      I understand your frustration and concern.

      Your super tiredness suggests that maybe it is not enough thyroid hormone…that said, it is hard for me to judge because it is not my body and you still have a thyroid. I do not have my thyroid and take T3 only…I take x2 10mg pills, 10x a day (20 pills total). Before that I was on half that dose and slept 22 hours a day, until a doctor suggested I increase until I have symptoms of too much. Another thing to consider is the fillers of the T3 as they can have a huge affect. The Paddock brand I did not do well on, felt like I wasn’t getting any (also got hives). Currently I use the Mylan brand and do quite well on it. Again, is not my body so very hard to judge from here…but the general symptom of too much thyroid is heart palps.

      That said, thyroid and cortisol are NOT connected at all…likewise, it is generally adrenaline and not cortisol that causes anxiety feelings. My understanding is that cortisol is what we use for day to day stress…and when that is LOW we use adrenaline instead. A better test that I have found than the usual panel run by endos, is Pharmasan’s Neurotransmitter Test…that will tell you what is going on with your adrenaline better than the other test.

      As well, there are a number of other changes in the body that can cause weight gain that is difficult to lose that has nothing to do with the thyroid (or the adrenals). For example, low taurine (an amino acid we make) will also cause weight gain that is difficult to lose. Also, high levels of norepinephrine (an anxiety/adrenaline precursor) leads to glucose release from muscles…which could, in theory, cause a corresponding insulin release and weight gain. And fasting leads to increased norepinephrine levels. Low dopamine, same thing…weight gain. As well, it was recently found that too many “good” bacteria in the digestive system also leads to weight gain because more food is broken down and thus absorbed. As well, poor liver function or eating too often in a day that causes the liver to constantly have to deal with foods not hormone levels; not enough quality sleep; too many carbs.

      My personal belief is that weight gain (beyond 10 lbs) is a symptom of illness in the same way as a sore throat is…and that eventually doctors will start seeing it that way. Already, 100% of hospital/doctor created diet and exercise programs do not work…which suggests to me that it is NOT diet and exercise related, but inner body chemistry related. My secondary belief is that it is a result of nutrient deficiency. That said, it could be from nutrients you would eat…OR nutrients you would make. From what I know personally of Phil, from Fat Sick & Nearly Dead (juicing movie)…is that I saw before my very eyes in 10 months time he was at his ideal weight with no health issues. He had been 427 lbs when he started. It is as if, in the face of finally getting complete nutrition, the body simply heals itself and un-makes the fat cells…which are, in reality, only three building block chemicals. Although they seem logical to me, I have come to realize that my ideas on fat are still a bit radical for today. Regarding what I suspect is nutrient def weight gain, it will happen regardless if a person eats or not (I don’t eat much, generally less than 500 cal a day)…but to the defense of those who do, a nutrient def would also cause one to always be hungry (the body’s natural attempt to get that nutrient).

      One of the big difficulties in finding the culprit of weight gain is just how complex our system is…and how widespread our divergence from things the way nature intended them (foods and meds primarily). Just when we think we know something about something (like eating more veggies is good for you), we find out that this may not be true. Certain genetic mutations can affect our ability to process folate. And veggies from the broccoli family (esp and including kale which are hot new fads) suppress thyroid function…as does soy. Although soy is touted as this great source of protein, it was never meant to be eaten. Furthermore, we feed our feeder animals corn which nature never intended them to have and lethal overdoses of endocrine hormones…and then eat their meat. Eventually (as in it is not a matter of if, but when) our system starts to crack and not perform nearly as well. So widespread is this that we think of this as normal…like heart disease is ever normal, or diabetes, or weight gain. I know that there are people who feel that there are ways to eat the broccoli family safely with thyroid issues…but as a person without a thyroid and lots of trouble getting enough thyroid (despite having enough in my blood stream), I can tell you it absolutely DOES affect one’s ability to deal with the hormone they are taking. Many people may not notice, or they may be on enough that they can do both, which is great…but for people like you (and I) who have trouble using what we are taking or making, it matters. And, sadly, soy is in like everything…chocolate, gum, teas with fruit.

      As well, it just seems to me (matter of perspective I suppose) that more people are sick with “mystery illnesses” than ever before. What I have found of the “mystery illnesses” (and all illnesses really) is that as a matter of course during reproduction of cells, our genes are changing…as in they are not static, but subject to change. Whether due to def of materials to build the cell or changes in our environment or both, in those changes, the genes that encode our ability to make and unmake the chemicals our bodies need functions increasingly less well…and, as a result, things are becoming unbalanced. And even with all that I have learned, I can see that the next level of knowledge is even infinitely more complex than that…as in, it is not just what we eat, it is not just what we can process…but it is about can we even use it if we have it??? Like the thyroid hormone and defects in the receptor…or B12 def despite adequate B12 in blood stream…??? All questions looming pulling me towards the next horizon in all this.

      If I hadn’t found that I wasn’t making taurine well…and began supplementing it, I doubt I would be walking now. Same with the B12 that I can’t seem to do without. I wouldn’t have known any of this if I had not 1) done the genetic testing; 2) been made worse by what the so called experts suggest to do; and 3) had the audacious idea to test the things the genetic report said were affected…to see what really was. Everyone’s mix will be different of course…but is was the single most effective inquiry into what was going on with me, and yielded the most direct treatment thus far.

      If I were you, I’d get the second Vit D test done (the 1,25 D)…if that is ideal or high, my guess is the excess D you are taking is the culprit. RT3 may also be, and can be tested as well. After that, a look at diet for sources of soy and veggies in the broccoli family. If all of that is done and the thyroid issue is still an issue…then it is probably time to look deeper into the genetic testing and more comprehensive lab panels. Diuretics may also be helpful…just a thought. Soy is a real downfall for me.

      Best of luck. :)

      • Michele says

        Hello Faith and thank you! I spoke to my doctor and we are going to get the additional vit-d test done!
        All my other vitamin levels are normal, except for Magnesium and B1.
        I’m already supplementing with Magnesium and I’ve rtied b1 but stopped it.

        Here’s my issues today… yesterday after I took my Fst acting t3 my temp weas up to 99.2.. so now my temp is above 98.6 and that’s probably why I’m not feeling the greatest!
        Then today, after talking to my doctor, I took Slow Release t3 this morning and my temp is again 99.0.. but my pulse rate is faint and only 72. So I”m not sure if now the t3 is too much or if it’s still too little.
        But my temp is really high and I don’t like that!

        Thank you in advance for your response on this!
        Hugs – M

        • Faith says

          Hi Michele,

          Sorry this is going so rough for you right now, ((hugs)). And *yea!* that your dr is willing to test the 1,25 D!!! Awesome dr!

          My understanding of B Vits is that, with the exception of B12, they should be taken together rather than individually.

          Going back to some other things you previously about RT3…if you have an RT3 issue, then you have some underlying chronic condition going on…or you are fasting. The body makes RT3 normally, but does so in excess in order to regulate the body. Drs tend to ignore RT3 because they see it in excess the hospital setting…and know that as the patient’s health returns the RT3 corrects itself naturally.

          The problem comes in when someone is sick with a low-grade chronic something…then it is always high and always a problem. And while it can be bypassed by taking T3 only, the cause of the RT3 remains the same…and untreated.

          Fever is an immune response, whether you are fighting a virus, a bacteria, or your own body (as in autoimmune)…it is a sign that *something* is going on. Bacteria generally cause high fevers…or higher, while viruses tend to cause low grade fevers. Many people have low grade Epstein Barr Virus EBV going on. Getting vaccines as an adult, esp the MMR in women can cause low grade chronic infection. As can many other things.

          I happen to have Lyme disease, and can tell you that for years my only symptom was that my temp was low and I never got sick (which I thought was a good thing)…but just as many have low temps. As well, one of the co-infections cause what is known as relapsing fevers that are a common symptom of autoimmune.

          I thought you mentioned having Hashi’s??? I don’t have it so I don’t know too much about it, but would venture to wonder if the fever is a sign of immune attack in that regard?? Just a thought.

          Not sure if your dr has an open lab (that you can go to anytime) or if you have to have an apt, or if your dr uses Quest labs that you can just go in. It might be super helpful when you are right in the middle of one of these reactions to get your TSH and FT3 checked. Especially if your TSH is pretty normal most of the time (mine’s wonky)…if your TSH is super low (like below range), then it is probably too much T3…if it is high, then not enough. It is also a relief to see your blood levels of FT3 to be sure. TT3 checks it all, bound and unbound, plus RT3…so that can’t tell you much. I would think if you could go in twice or maybe three times…once while in the middle of a reaction and once when you are feeling fine you will get a clearer picture of what is going on.

          Hope that helps. Hang in there. I know it can feel like you need it fixed right now…my first couple years after my thyroid was removed it was like that…and it was agony that I’d have to wait a month on one to get re-checked, it didn’t make sense…but now some years later, my drs sage advice was to tell me that the body is very resillient…and it would seem she is right. You really will find the answer, it will probably take longer than you would imagine, but you WILL find teh answer…and everything you try will bring you a step closer, s hang in there. :)

  62. Michele says

    Thank you so much for getting back to me Faith.
    I do test low on Vitamin D and have been taking 50,000 IUDs 1x per week for several m onths and now I take it 1x bi-weekly.
    Since I’ve change to 1x bi-weekly my nails are not quite as nice, actually they’re not good anywas but I also know that Vit-D is sooo crucial to everything!
    But now that you mention the corrilation with t3 and vit D I wonder if bc of the vit d I”m not making t3 as you had mention.
    I’m super excited about this and learning all this stuff!
    I am taking Slow Release T3 at night bc I feel it is helping with my sleep and helping me feel stable when I wake up in the morning.
    when do you know when to up dose on t3? what signs might one have when they need more or when they need less?

    I hope to also lose some of the water retention that I have, I am such an active person and have been in such great shape for years, but now I fluxuate sooo much.. I was just 107 and now I’m back at 109..
    Do you know about when someone who just starts t3 will lose the water retention and lose that weight?
    Also it’s keeping me from using the bathroom as much (bowel movement).

    What I find strange too, is all my hormones are lower than ideal.. they are on the low side, my progesterone, testosterone, estrogen, DHEA, growth hormone, etc.
    Could that all bein correlation with the t3/thyroid?
    And one my t3 is working properly my hormones will fix themseleves?

    Hugs and thanks!

    • Faith says

      Hi Michele,

      Try to realize that the lab ranges are not perfect…to get them, they average the results for everyone at the lab getting tested…which includes healthy and nonhealthy alike. Sometimes, your numbers are just ideal for you.

      Regarding dosing, I am on T3 only (not slow release)…and for me the symptoms of too much and too little are nearly identical…with one exception either way. When too little I get weepy and cry at cute things…when too much, I want to fall asleep soon after taking it. And, as I say, I take it 10x a day.

      There was a time, however, when I was on way too little and did not realize it for a while. I was in incredible pain and sleeping 20-22 hours a day, I thought because of coping with the pain. One of my dr’s suggested that I increase my dose until I got symptoms of too much. I ended up doubling it, the pain went back to bearable levels, and I stopped sleeping all the time.

      That said, the hallmark that I think one should look for is this…if you take more and your T3 levels stay the same then it is likely that this is what your body set your levels at. However, if you take more and your levels increase, then it is a good sign that you needed more. This is an important distinction, I feel, because if you still have a thyroid (which it doesn’t sound like you do), then taking thyroid hormone will cause one’s thyroid to make less…and less and less, until it makes none and atrophies.

      I know the so-called internet websites “experts” say that T3 should be in the upper third of the range…but this is just not true. Best to go with how YOU feel on this one.

      If you are going to take Vitamin D, likewise and an endocrine hormone…my suggestion is get the dual D test…the 25,D (that they always test) and the 1,25 D (that they hate testing). This way you can see proof positive whether your active (1,25 D) is in the normal range or not. If you have the Vitamin D Reversal Pattern (low 25,D normal/high 1,25 D) that is a pretty clear sign that something else is going on.

      I am not going to make any friends by saying this (and probably a lot of enemies), but any doctor or studies conducted using only the 25,D tests…are invalid on their face. I am sorry to say that and do realize that they put in a lot of work…but it is just the same as testing only T4 and making assumptions about health on T4 only labs (or TSH only labs for that matter)…and, it makes absolutely no sense. I know that it will take the world another five years to catch onto that…but the more you know the better I always feel.

      I can’t say about the weight loss…and I am not sure where it is being connected to T3 on the internet (rue the person spreading such falsehoods). IF weight gain is purely from low thyroid then thyroid supplementing will bounce it back almost immediately. THAT SAID, most people I know…that once they get on thyroid hormone (rather than from their own thyroid), do not fair all that well…and weight gain seems to happen to most. For me, I fluctuate between 40-60 lbs from what I was when they took my thyroid out. Had I only known then…what I realized soon after…man has yet to replicate nature…and ANY thyroid hormone (even dried out feeder pig gland) is imperfect at best. That said, water gain is usually something else…like too much sodium. One thing I have learned, is that I need to eat at least 1,000 calories a day or I gain weight.

      One of the surest remedies for not-going is a magnesium rink sold by Walgreens (and the like)…horribly sour. I have found that NatureMade’s Magnesium Oxide (a pill) works even better. Usually just taking two will do the trick. It is often sold at Target. People do not like the Mag Oxide form as a supplement, but as a lax it does great.

      Your question of, if you fix the thyroid levels will all the other hormones fix themselves…is another false internet rumor (strongly and passionately believed, but false on its face). The connecting factor being the pituitary and hypothalamus which set the levels and regulate it all. Beyond what the pituitary and hypothalamus say…then it would be enzymes, and the liver and kidneys.

      The primer is, the hypothalamus listens to the body’s levels and determines what levels they should be…it then tells the pituitary which tells the corresponding glands what levels to kick out. IF your TSH is fine, and IF your pituitary is working perfectly…then your T3 levels are fine…even if low by the standards. IF, however, your TSH is super high…then it is screaming for more thyroid (and if it is super low, it is screaming for less thyroid hormone). Another common false belief is that one can force a hyperthyroid state in the hopes of losing weight…but not only will the liver correct that, one’s bones demineralize (I suspect because calcium binds to the hormone rendering it inert…or some such similar action).

      You body’s levels may just simply be low…and that may be perfectly normal for you. Likewise, for reasons doctors may not know (yet), your body (hypothalamus) could simply have set your levels lower.

      Why things slowly start to breakdown as we age is generally because as our cells reproduce, they do so imperfectly…so that ever set is slightly less perfect than before.

      The treatment for water gain is usually dieretics (things that make you pee a lot).

      Hope something there helps. :)

  63. Faith says

    Michele,

    Sorry, I can’t find your post about dropping weight, sensitivities to light and sound, and motion sickness feeling…but perhaps can help point in some directions.

    I have had my thyroid out, am on T3 only due to overproduction of RT3 (way beyond range)…and yet nearly always hypothyroid despite taking enough. Along with that, I have had some symptoms that don’t fit squarely in any picture. Having been sick now for over 5 years, I have found some things that were more useful than others.

    First of all, I did end up doing the 23andMe.com genetic test…because after going round about the long way, it was the simplest easiest way to get all the testing rather than piecemeal. I did find that I have defects in the thyroid receptor gene/s. They are abreviated THRA and THRB. My THRB gene is the one with lots of mutations and may explain why i am often hypo.

    After my dr tried me on a number of supplements that the so-called experts say you should take for some of the other defects…and after they all made me sick…I started to think, why not just test the things that they say are affected and see what is (and more importantly, what isn’t) affected. This set of labs did me more good than anything in the previous 5 years. The labs I did were the Urine Amino Acid (UAA); Organic Acid Test (OAT); Neurotransmitter Test w/ taurine (from Phramasan); with some additional tests. Some of the other labs were pertinent to my situation…like the taurine, aluminum (because of the GABA/Glutamate imbalance), etc. But this by far yielded the best testing differences. Previously you mentioned only having the thyroid and anemia tests come up off. One of the oddest things we found, is that I am not making adrenaline very well. This sort of runs contrary to the cortisol and temp tests (sorry about that). Seems like there is a breakdown in the enzyme that converts norepinephrine to epinephrine. This led to me fainting and feeling quite unwell with ANY stress.

    Granted, with all the genetic stuff…and with then having to study things like the methyl cycle and the general making and unmaking of compounds in the body, I have gotten a bit deep…but it is really not as difficult as it first appears…and I highly recommend both the genetic testing and lab panel for anyone who has unexplained symptoms…esp those who are stumping their doctors. It was from that testing I began supping taurine and a special B12 that I began finally getting better. There was no way that my conventional doctor (or even my alternative one) would have thought to do that.

    Lastly, and perhaps completely irrelevant, Lyme Disease has been noted to cause sensitivities to light, sound, and chemicals particularly in the midwest USA. It is possible to have a low-grade, chronic, underlying case of Lyme and not know it. That said, it is also possible to have chemical sensitivity and not know it. Some of the common symptoms are low body temp (usually a degree or two low) and not catching many colds. Unfortunately, the screening test used only has a 35% chance of picking it up…therefore the gold standard test is the Igenex Lyme Screen ($260)…it will show whether or not you have been exposed. In later stages you don’t produce as many antibodies to it…other tests that could show whether it was worthwhile to run are the CD57 and C4a. Both are aspects of the immune system. CD57 will be low if you have late stage Lyme and are likely to test low on Igenex. The C4a, however, will be higher.

    One the subject of chemical sensitivities, two movies hit it home:
    Short: https://www.youtube.com/watch?v=SCD-_47Maww
    Long: https://www.youtube.com/watch?v=r8lCXbPwg1k

    Hope some of that helps. :)

    • Tim says

      Faith – how were you able to “decode” your THRA AND THRB SNPs from the 23andme raw data and find out which SNPs are the risk alelles??? I ran them through SNPedia and came up with nothing.

      • Faith says

        Hi Tim,

        Admittedly, 23andMe is difficult to decode as it only shows 2 letters…and not even whether they are capitol or lower case! They also don’t show repeating gene sequences.

        And while I don’t know this part for certain, I also don’t think that they include the patented genes either (like the breast/ovarian cancer gene)…since private companies are making big bucks being the only ones who can test them.

        That said, I can tell you this (and this will really get your brain working)…for those with double mutations of the specific “named” SNPs of the MTHFR gene, they’d either be dead now…or some other SNP or some other gene/enzyme is doing the job. ;)

        Hope that helps.

        • Honora says

          I was tested for 2 BRCA genes with 23andme. Also regarding WDT (Armour etc.) my GP said it contains antibodies of porcine origin that would attack my thyroid gland so with having Hashi’s I’d be better off on synthetic thyroxine and T3. Has anyone heard of this or better still knows a paper purporting it. I could ask the GP but don’t want to be challenging her all the time!

          • Faith says

            Hi Honora,

            My understanding is this…the two main things from your own thyroid that your immune system attacks are Thyroid Peroxidase or TPO (the enzyme that “digests” iodine to be used in the making of the thyroid hormone; and Thyroglobulin or TG that bins the iodine to the molecule of thyroid (ie T3 is one molecule thyroid and 3 molecules iodine). Since you have Hashi’s you have probably already had the TPO Ab an TG Ab tests done. Dried out thyroid tissue contains these two things that your immune system will recognize and attack just like it does your own tissue.

            Hope that helps. :)

            • Honora says

              Thanks for your reply, Faith. It sounds like what your describing is a situation where my body attacks the Armour medication. What I thought she said was the Armour medication attacks my body b/c the pigs’ antibodies (anti-TP0 and anti-TG) attack my TPO and TG. I don’t know if a pig’s antibodies would survive the manufacturing process of WTE. I guess I could ask the various dudes who manufacture it but I’m guessing they wouldn’t know. I could ask one of the long-suffering immunologists at work that I ask these questions to but I suspect they wouldn’t know either! Cheers.

              • Faith says

                Hi Honora,

                I don’t know, but i don’t believe that it is processed near as much as they say in internet groups. I take a pig pancreatic enzyme and the insert contains a warning about the possible transmission of bacteria or viruses…assumably because it cannot be cooked to remain active. It would make sense that similar is true of active hormone.

                It does contain TPO and TG. My personal thought has been that it is contradicted in people with hashis or graves. However, because of the false belief about it being “natural” or somehow better has led to many (what I call) internet doctors in private practice looking to sell what people are buying with no regard to the risk to patients tend to promote it…something I consider a dangerous practice. Same as the proactice of giving tired patients T3 even when their T3 levels are normal…or T3 for weight loss. No health minded person would consider Armour Hot Dogs a “health food”…and with the thyroid gland being far more polluted than the meat it sort of just baffles me. Anyways, that is what I know.

                That said, it also contains other hormones that some may have genetic defs in and thus are helped by those more than as a source of thyroid. I also wish doctors or researchers would pick up the ball on testing for that since there may very well be a much safer alternative to supping what is missing.

                Hope that helps. :)

  64. Michele says

    Good morning..sorry for all everyone is feeing. I have not had weight gain but weight loss..loss of muscle and fat. At times I feel like I have adrenaline rushes..don’t need morning coffee anymore. Face gets tingly like it has novacaine at times..pressure behind eyes…sensitivity to white lights and feel motion sickness when I am not moving. I take synthroid 88 and cytomel 5mcg…t4 fine but t3 and iron levels low. Had probably every test..mri out there. Do have hasimotos. I know there is something else up but feel like a science project that nobody wants to finish. Wondering if anyone has symptoms such as these…thank you.

    • Fern says

      Sounds like Graves’ disease, to me, or a hyperthyroid cycle within the Hashimoto’s, which I have heard can happen. Maybe other autoimmune issues. I guess your TSH was within range though? Maybe yours is the classic “low T3 syndrome” ??? Maybe you need a finer adjustment to your meds, maybe such precision that you could only obtain if you were adjusting them yourself according to your symptoms, like pulse, and only if you were not on the time-release types. Pulse faster than 80? cut back on cytomel; slower than 60? add a bit more; in the 70’s and otherwise symptom free? stay on your current levels.

      Just my opinion. Talk to your doctor for his recommendations.

      By the way, it seems like there are two Michele s posting here… How can we tell you apart?

  65. Michele says

    Hello, I am 37 years young, a mommy of 2 young boys, a full-time working professional, etc.
    I’ve suffered from ADHD and anxiety but have found that my anxiety is all related to my thyroid, which is soo comforting! When my thryoid is doing well, I feel great with no internal anxiety!
    Here is my experience with slow release t3:
    I just got done with cycle #2 of Wilson Temperature Syndrome and it’s helped me so much. But it’s now shown me that I do have hypothyroidism.
    My t4 and t3 levels are not low off the charts, but they are lower than ideal levels.
    I believe b/c of doing the WTS that I have a Rt3 issue, my t4 isn’t converting properly to t3. And here is why I think that. Cycling up on WTS was easier then cycling down off WTS. Plus, once off WTS my temp is avering 98.6. When cyling up on WTS or Down my temp would only capture 98.6 for 1 – 2 days at the tops and then go back down a little.
    My sleep improved SOOO much on the t3 cycle but once I came off it I found it was harder to fall asleep again. I’ve always had a hard time falling asleep and that’s why for 13+ years I took a benzo to help me fall asleep, but I’ve sinced weened off that horrible dependancy drug, I’m 7 months post benzo, yeah!

    Anyways, I’ve also found that t3 helps with my constipation! When I’m on it I could go a lot more and when I’m off it it’s harder to go. I take Linzess 290mg 1x and Miralax 2x a day to help me go to the bathroom so I can notice a difference when I’m cycling WTS and constipation.

    Also now that I’m not on WTS and time release T3 my skin is sooo dry, especially on my feet. Dry enough that the bottom of my feet catch onto my soft bed cover at night, :-( also the tips of my fingers are dry and getting rough as well. I’m a petite lady and this is not cool!

    I have a wonderful Doctor and she is trying to help me with this. However she is over an 1 1/2 away and she is very expensive and she thought to put me on Armour 30mg, which I took for only 3 days and here’s why. I respond to things very quickly, the 1st day I was good in the morning then by the afternoon I had anxiety from it (It was over the weekend too). I managed but it was uncomfotable, but then the next day I felt great and then the following day again i didn’t feel so well. Each of those 3 days I found it VERY Hard to fall asleep and each of those 3 days I had internal anxiety, it’s hard to explain! I didn’t have any anxiety at night while trying to sleep but felt I couldn’t turn the lights out.

    I think it’s because of the t4 and my body just doesn’t like it, even though my blood work showed that the levels were lower than ideal.
    I also think the reason I might of felt somewhat good for 1 of those day is bc of the quick release t3 that is in Armour.

    I thought well I’ll try to use the slow release t3 as follows:
    1 in the am and 1 in the pm, similar to WTS, but I wouldn’t cycle up. Well I started out on 7.5 and took that for 2 days and then worked up to 15mg and the 1st night on that dose I slept great! Then yesterday I took 15mg in the morning and 7.5mg at night and noticed right away I couldn’t use the bathroom for a bowel movement, even though I took my meds to do so, and I felt things moving around in my tummy to do so.. then I took another 7.5mcg and within an hour I started using the bathroom. However I didn’t have good sleep at all!

    This morning I didn’t take any t3 and my skin is getting very dry again already…. especially the skin on my heals!

    I hope you can shed some light onto what you think the best course of action would be.
    To try Cytomel 3 – 4 x a day, maybe the fast release is what i need.
    Or maybe try 1/2 of a 30mg of Amrour and SR T3 at night.

    I am currently also on 50mg of bioidentical progesterone pill and 30mg of bioidentical progesterone cream, 1x each a day.
    Plus the 290mg of Linzess and 2 x a day Miralax.
    And that is it.

    I also think that my cortisol levels maybe low in the morning and higher in the afternoon, or visa versa.
    I do find that I feel much better in morning, even thought that is when my temperature is at 98.2 and then by noon or so I start to feel internal anxiety and my temp goes up to 98.6 or higher sometimes.

    Hypothyroidims runs in my family!

    • Michele says

      I did want to add that I find it very easy to gain weight and hard to lose weight. I find I cannot work out in the am as hard and as much as I’d like to and I once did. If I do, then by the afternoon I feel even worse with anxiety.
      I am 4′ 11″ and my normal weight is 103 but I am 108 and go down and up a pound all the time. while on WTS at some doses I got down to 105 but then it changed b/c of the WTS cycling.
      I also retain water as well, my tummy isn’t as tight as it always has been.
      I have always been in great shape, competed in figure shows, etc.. but right now my weight is crazy!

      One other thing, while on WTS when I needed to take a rescue dose of t4, it would sometimes make me feel even worse. And it was supposed to help!

      Thanks again for your help!

    • Faith says

      Hi Michele,

      I take regular T3 (not slow release), and I take it 10x a day. What I can say is that it is difficult to know what you will need and how you will need it until you get going on it. I find that I take it more often in the morning an evening and less often in the middle of the day. Like you, I am pretty quick to react…and have learned my body’s language of when too much and when too little and adjust accordingly.

      The inherent problem with taking any hormone is that the liver will clear (or should clear if it is working correctly) any excess. So, hypothetically, taking T3 once or twice a day the liver would clear out the excess within a few minutes leaving one low.

      RT3 is fairly easy to test, and I know Quest Labs tests it as well. RT3 is made, primarily, in the liver…and usually in response to some underlying illness…which may, or may not be your problem.

      Low T3…or low conversion to T3…could have a number of reasons. I know of at least one person who feels best when her T3 is in the lower end of the range…and T3 should always be dosed on how you feel (imho). The amount of T4 really doesn’t matter…as it is just a storage form of the hormone that must be converted to T3 to be used…again, something that happens primarily in the liver.

      That said, you seem to be a good responder to thyroid supplementing…so you have that on your side. Armour has many other things in it and not just thyroid hormone. As a hashi’s person…it also has the things the immune system attacks.

      Alternatively, there are at least two other causes (besides RT3) that I know of that can contribute to normal T3 lab results and still hypo-thyroid. One is Vitamin D…which is, in reality, another endocrine hormone. The endocrine system shares a receptor and Vit D “displaces” T3 from the receptor when it is in excess. And, it can be in excess unbeknownst to most people and even doctors…because for whatever strange reason, they only ever test the storeage form of Vit D (similar to only testing T4). People who have genetic defects OR people who have bacterial infections over make an enzyme called CYPB27 that converts that storeage Vit D (25,D) into the active, usable form (1,25 D) so as to have someone ALWAYS look low on the test that they do. And, because the person LOOKS low they tell that person to take Vit D…which then causes the untested active form to become too much and prevent T3 from getting in the receptors.

      The other cause is a genetic defect with the receptors. Although I am sure you could get testing of the THRA & THRB genes done, the cheapest way I have found is through the 23andMe.com site for 99$…an then search the raw code for the two receptor genes. I found that I had numerous defects in the thyroid receptor B gene and suspect that this is why I am often hypo-thyroid despite taking T3 only multiple times a day.

      Hope that helps shed some light. Sorry you are experiencing thyroid issues. Sounds like you have a helpful doctor. :)

  66. says

    So, I’m on Nature-Throid and now wondering if I should? However, I do feel better on it but also wondering if I should be taking an extra grain per day… I have PCOS, Hypothyroidism, and suffer from hypoglycemia and adrenal fatigue ugg…

  67. Diana Hurwitz says

    Most recent article on this topic: http://www.holtorfmed.com/uploads/file/protected/controversies-in-the-diagnosis-and-treatment-of-hypothyroidism.pdf
    My story:
    After a diagnosis of Graves Disease in 2008 and total thyroidectomy, I could not tolerate sufficient amounts of T4 to feel well and developed level 9 pain and muscle weakness. I read Dr. John C. Lowe’s textbook, The Metabolic Treatment of fibromyalgia (which I had been diagnosed with 20 years before and consisted of muscle cramps and exercise intolerance). I realized I had probably always had problems converting T4 to T3. I insisted on trying 5 mcg Cytomel T3 in addition to .112 of Synthroid. Within days all of the muscle pain and weaknesss and everything connected to fibromyalgia was gone. It was gone for 2.5 years. Then I was diagnosed with Type 1 Diabetes LADA with GAD65 antibodies and had a return of the muscle pain and weakness with a current diagnosis of Stiff Person Syndrome. I have tripled the Cytomel 5 mcg three times a day and dropped the Synthroid to .88 six days a week. I still believe I have suboptimal levels of T3 at the tissue level, complicated by the Valium I have to take for SPS, and know I have suboptimal levels of GABA due to the GAD antibodies. I believe there is an unequivocal connection and that collaboration between endocrinology and neurochemistry will point to a cure for all of this. GABA and thryoid hormones are entwined. And GABA injection studies have shown that GABA not only prevents but reverses type 1 diabetes (Note: not oral GABA – it does not cross the blood-brain barrier). The level of T3 in the tissues is affected by so many things and the TSH/T4 tests do not reflect accurate tissue levels of T3. The pituitary can have much higher levels of T3 than the tissues have access to as well. But I can tell you for certain that T3 made me feel like I was 20 years old again. It reset my sleep cycle, corrected the IBS, got rid of the muscle fatigue and exercise intolerance, I had energy to burn, and built muscle strength and range of motion etc. for those 2.5 years. GABA/T3 are a large piece of the puzzle, I’m certain of it. Prior to the LADA diagnosis I had a very stressful year, with deaths in the family, and I went into physically stressful activities to cope with it. I’m am certain that added to the imbalance. I want to try higher levels of T3 but am meeting resistance and my Endo still insists on using T4 /TSH as a guide for “normal”.

    • Faith says

      Hi Diana,

      So sorry that you have gone through all that. Someone else who posts here also has stiff person syndrome. Also, I share many of your issues with the T3 and GABA…and not feeling like you are getting enough even though there is sufficient T3 in the system. As wel, my TSH is all over the place. Also, the fibro, thyroidectomy, pain, stiff muscles…and muscles knotting at rest. As well, in my experience it is connected to the thyroid as well…but is nortoriously difficult to find drs who understand the connection of pain and thyroid. My thoughts on why these things have ranged all over the place…and I still don’t have a perfect answer, although am much closer than before.

      My path went in a slightly different direction than yours and I was dx’d with late stage Lyme as well…which led to the genetic stuff. What is on the internet is a bit wonky, but it led to what was, at long last, helpful. I did the 23andMe genetic test (was only $99 and is pretty comprehensive)…from there, everything the so-called experts said to do that my dr was giving me made me sicker, so one day I said lets just test everything the report said was affected and see what was really affected…that is where my answers began taking shape.

      First and foremost I found that I had stopped making enough taurine…and the supplementing of is what started turning my health around. I also found that, like you, I have a gaba/glutamate imbalance…for which I take the rx baclofen…which is a gaba with a molecule added to confuse the neurons (it is an MS drug, I guess in MS the neuron reject the gaba)…anyways, point being it DOES cross the blood brain barrier and DOES work incredibly well…at least for me. I went from being curled up where my PT had to keep stretching me out to being better than when they stretched me. It still is hard to lay flat on my back (it stretches), but am worlds better than before. One of my dr’s suggested phynelated gaba saying it crossed the bbb, but no such luck for me…it did not work the same.

      I also found out, by searching the raw code on 23andMe, that I have a lot of defects in my thyroid receptor. Although I haven’t seen the article on connection of the thyroid and gaba receptor, I know that endocrine receptors are one receptor that does multiple things so it doesn’t suprise me.

      The other thing I can add, regarding the T4 issue…you might look into a rx called Tirosint (needs special permission for insurance), but is a T4 with no fillers…and is the ONLY thyroid drug I have taken that I did not have side effects from. However, as I make way too much RT3, I take T3 only in the form of Ctyomel…I take .10 – 10x a day. Also, have to take the Mylan brand as the Paddock brand gives me hives and I feel yuk on. So just some thoughts there.

      Again, sorry about all you have been through…hang in there.
      -Faith

  68. Rick Paquin says

    Back in 1995 I was diagnosed with depression, lethargy, weight gain, sensitivity to temperature, Epstien Barr, headaches, and tested and treated unsuccessfully for ALL of those ailments. Most days I didn’t have the energy to get out of bed. I read about a doctor in the area that treated thyroid disorders as described in Wilson’s Syndrome and went to him. He didn’t have many patients. He explained to me that the reason was because his patients had become well. He also complained that the AMA was on his back.

    Noting my low body temp 96.7, he tried me on a small dose of “compounded” T3. He explained that compounding was necessary as T3 (Cytomel) only has a working life of about 3 hrs. He wanted me on a stable daily dose so it was compounded with a 12hr release. I took each dose 12hrs apart. Within a week, I lost 5 lbs, and began to feel like I did when I was a teen, and no depression! I then went back and he continued the treatment. Monitoring both body temp and heart rate, we found a dose that brought my body temp up to 98.2 without increasing my heart rate. After 3 weeks I was a brand new man! I fired both previous doctors that had me on depression drugs and all sorts of other chemicals that did not work. That was 1995 and have NEVER had a relapse of Epstien Barr since, nor depression, nor temperature sensitivity. Oh yes, and I lost 20 lbs and now eat what I want without fear of weight gain. I’ve since lived a full productive life and I credit that doctor for giving me my life back. It’s difficult to find doctors that will continue treatment, but they can be found. It should be noted that I am ONLY on T3. Blood results confirm that the body doesn’t really need T4 at all. My T4 level went to Zero back in 2000 and remains at Zero today and I’m doing just great! As noted by Chris, I cannot convert T4 to T3, so logically my new doctor concluded it would make no sense to administer T4. I am totally fed up that the AMA and main stream doctors who do not open their eyes to this treatment. It’s criminal to allow people to become overweight, depressed and non-productive ONLY because of ignorance. Why isn’t it studied so all doctors understand how it works? Why? Well do the Math. Synthroid (T4) is a multi-billion dollar business. If it was exposed that Synthroid isn’t really benefiting but 15% of the people who need a thyroid supplement, and T3 was the solution, the company would lose revenue. Yes, I think it’s all about money, not the patient! The T3 evidence exists and many doctors are quietly prescribing T3 because they are the few who believe in making patients well. Unfortunately the result is that their patients DO get well and they have to constantly find new patients or go out of business! T3 simply doesn’t sustain their long term business as a doctor. You don’t want a treatment that really cures peoples ailments because if you’re a doctor, you will be a poor doctor! Cynical? You bet I am. I was fortunate to find the right doctor, but what about the other millions of people being currently mistreated for a thyroid related condition??

    • Faith says

      I am just soooo glad that you got better! :)

      Like you, I also do not properly turn T4 into T3 and am also on a T3 only treatment for my thyroid. Unlike you, I am not instantly better of all things…and, if I don’t eat enough (over 1000 cals a day), I gain weight. That said, I agree…these doctors can be found and many are hiding in plain sight. My doctor is at a large main-stream facility, takes insurance, and gives me T3 only.

      Re the other stuff, the first doctor that treated me had me on T4, even though it was generic. That said, they disclose on their website that he received $250,000 from Synthroid. Not a big conspiracy theorist myself, but was disheartened to see that…especially because at the time my T4 numbers were normal, my T3 was normal, my RT3 was over 100 pts above range and I was collapsing. His solution, raise the T4 dose. When I got to the doctor I have now, my RT3 was over 180 pts above range, she said that it was a wonder I was getting any T3.

      Yes, the information is there…and yes, it should be logical that they use it. That said, most doctors are like sheep (followers) and not shepards (way showers)…and there is a process that change must go through…seems to take about 20 years for things to reach medical practice.

      Anyways, so glad that you are better!!! What a relief. :)

  69. Roisin G says

    I am 25 years old, been perfectly healthy all my life, no issues with weight gain (actually struggled with keeping weight on!). High metabolism, hearty appetite, tons of energy.
    As a teen I started experiencing menstrual-cycle related classic migraines. They became so severe with such terrible auras (prolonged vision spots and extreme nausea) that I was prescribed beta blockers for them in college. The beta blockers worked and the migraines went away. Thyroid was always tested because of my thinness, but as TSH and T4 levels were fine so no follow up was ever done.
    I became pregnant and lost the pregnancy at 8wks when I was 21. After that, my cycles became highly irregular and very long. Fell pregnant again at 23, was diagnosed with extremely low progesterone levels at 9wks and took progesterone supplement injections throughout the pregnancy up to third trimester. Other than that, perfectly healthy pregnancy, healthy beautiful baby born with no complications who is now almost 18 months old. Migraines occurred throughout pregnancy since I stopped taking the beta blockers after the loss of my first child.
    I started cycling again in April, 9months after my daughter’s birth. I was breastfeeding full time at the time. A few cycles of semi-normalcy, then nearly 4 months of nothing. I weaned my daughter in September and experienced a “breakthrough bleed” (not a true period).
    About early August I started feeling incredibly tired. Poor appetite, little zest for life, hair loss, sensitivity to cold, lots of classic thyroid symptoms (although weight gain was not one). Very, very unusual for me. My husband encouraged me to make an appointment with my trusted GYN to see what was up. My GYN who is NaPro trained did a reverse T3 on me and found that my level was at 5-6, despite TSH and T4 being normal (as they had been in the past). In addition, I have low waking basal body temperatures and always have had. My progesterone and other endocrine levels appear healthy and normal, and I am not anaemic.
    My doctor is a wonderful physician who wants to try me on some slow-release boosters to see if we can’t boost up T3 function. I feel that migraines, irregular cycling, and my current apathy are all somehow related, as are my low progesterone pregnancy levels. Something – be it autoimmune disorder, thyroid function, what have you – is not quite right. I don’t fit into any category for autoimmune disease that I know of – I’ve always had a very healthy digestive tract and gut, no food allergies, and indeed no foods that really bother my system at all. I’m terribly intrigued to get to the bottom of this and grateful for any input!

    • Faith says

      Hi Roisin,

      So sorry about your lost and grats on the little one. You certainly have some hard-to-pin-point symptoms. You and your dr also seem to be chasing down all the suspects. I agree, something is not right. I suspect that there are growing numbers of patients where things aren’t quite right but who do not fit the classic ills. On the good note, sounds like you do not have an out and out auto-immune disorder yet.

      Just some thoughts off the top of my head…high dopamine can make you have no appetite. It is the liver (primarily) that converts T4 to T3…it also balances and regulates our hormones. The liver filters out excess hormones and marks them for excretion. That said, I know of at least one enzyme issue…an enzyme in the GI tract that un-marks estrogen and sends it back into the blood stream…I suspect that there are others.

      If you are low in T3 (the usable hormone), you may benefit by taking some…however, I say that with the caveat that if your levels stay low despite taking some – you probably should stop. There are two causes of low…one is you are failing to make enough (which would raise levels if you took)…the other is that the body set the levels low for some reason (in which levels will stay low)…if this is the case, your thyroid will simply make less to compensate for what you are taking and that is not a good thing esp in the long run.

      My general advice to anyone with symptoms that dont fit classic dx’s is to learn the entire system for your particular things. There is a lot of false info on the internet…info that sounds really good and logical, and even that many drs use, but is still false on its face (ie the falsely believed connection between adrenal function and thyroid function is not biologically connected) so learning the biological pathway for your particulars will go long ways in helping you weed out false info.

      Lastly, although I am not sure how it fits your particular profile, you may want to look into genetics. By this I do not mean like congential genetic defect type stuff, but your own gene code for making the various enzymes you need to do all the various functions in your body. Two issues can arise…one is, as we copy our cells (including DNA), each copy is less perfect than the original…so defects crop up. In out and out auto-immunes, one’s genes change…at which point it is unlikely to be fixable any longer…so you are not there yet which is great. The other is…you may have one of two genes mutated and was never a problem before because the good gene prevailed…but age and issues can interupt that and cause it to no longer function well. It is a fairly new subject in the medical world…and most of the gene function is still unknown…but for what they do know it is highly helpful and interesting. One of the well known genes, MTHFR, the gene that instructs the making of the MTHFR enzyme, which is the enzyme that adds a methyle group onto folate…(which is just one of millions), is readily searchable and you will find lots of information.

      My two bits on the subject are this…23andMe.com has the test for $99 and you don’t need a dr to order it. After that, you can search the raw data yourself or run it through software like Genetic Genie and get your methylation report. There is a super complicated chart of the methyle cycle (there are other cycles as well) at Heart Fixer dot com. BUT…the current hypothesis in the field is that if you have a defect (ie MTHFR) you simply take what the body would make after it (ie methylated-folate), however, like 8 of those things that the so-called experts in the field say to take made me very sick. So what I did was took the report and had my dr test everything that it said it affected to see what was and what was not being affectd. Lo and behold I found some very interesting stuff. I don’t make the amino acid Taurine very well…and I don’t make adrenaline well. None of the experts say to take taurine…but I do and cannot sing the praises of what it has done in my life enough. For me this approach was just logical. Yours would, of course, be different…but is about the most personalized way to go into the medical arena and the quickest way to get your true answers.

      Best of luck,
      Faith

      • Roisin G says

        Thank you Faith, great input! Something I have always noticed about myself is my ability to metabolise things very speedily, ie alcohol. I am adopted and my birthmom was on a lot of drugs. She got clean when I was about 4 months old in the womb, but I was still expected to to born with some issues. I have never had any thank God and have always been very healthy, but I’m wondering if maybe this could be related. Drugs particularly alcohol can affect liver and other organ development. I will bring your info up with my dr and see what she says. Thanks again!

        • Faith says

          Interestingly, how quick or slow you metabolize something is genetic. On of the fun aspects of 23and<e.com is that it tells you if you metabolize coffee or cigarettes faster too. It also shows one's ability to metabolize certain drugs which is nice to know (ie warfrin whether you need more or less than average people). As someone who has been chronically sick for awhile with symptoms that dont scream any one thing, I found the genetic testing to be the most effective method of getting to the bottom of things. As I mentioned, after the testing I ran it through the free software site, Genetic Genie…and then had my dr test all the things it said it affected (mostly amino acid tests)…that is when I yielded the missing nutrient taurine which supplementing has been such a huge help. So has become my advice when drs try the obvious but still just don't know.
          Best of luck,
          Faith

          • Sharon says

            The 23andme test has been a great help to our family as well. However, after taking the GeneticGenie reports to our naturopath, he suggested running our raw results through the MTHFRsupport software ($20 via PayPal), which yielded a list of 5 times the mutations that GeneticGenie had.

            We’ve found the Genova Diagnostics NutrEval FMV test to be the best for trapping what problems the mutations are causing, and both the Heartfixer site and Amy Yasko’s Pathways to Autism ebook have been helpful in understanding what our naturopath is doing to help, and has helped us ask questions that have improved our treatment and outcomes.

            We all have various thyroid issues as well – I have the famous, but apparently, non-existent Wilson’s syndrome, and have had extremely good results with generic Cytomel, after learning to avoid the ones with the CORNSTARCH and LACTOSE fillers, to which I am allergic, in addition to gluten. And so, I have appreciated reading through all the comments above – thanks all.

    • Gillian says

      Here are a few other ideas – I don’t know if any of them would fit with your situation, but just in case –
      1. If not already done, consider asking your doctor about having your ferritin and C-reactive protein checked. If both are low, you may be low in iron. If both are up, you may have something inflammatory going on (for example, some sort of autoimmune thing.) If the ferritin is up and the CRP is down, then it might be worth checking for hemachromatosis.
      2. Is your pituitary okay? (Any change in your headaches or are they exactly the same migraines as always?)
      3. Does going right off gluten make any difference? There’s such a thing as “silent celiac” where people don’t have gut symptoms but test positive for celiac and can have other symptoms, such as fatigue, that get better when they stop eating gluten – and then there’s non-celiac gluten intolerance where people don’t test positive on any of the tests for celiac disease but feel better not eating gluten. Caveat: you have to be eating gluten for celiac to show with antibody or biopsy tests. (It doesn’t matter for the genetic tests.)

      • Roisin G says

        Thank you Gillian!
        1. I have had iron levels checked (anaemia is the first things drs think when they see how thin I am and hear “tired”) and they have always been great, excepting during pregnancy which I think is fairly normal. I don’t know my family history but I will talk to my dr about the possibility of hemachromatosis, that is definitely a possibility.
        2. My migraines are the same textbook classic migraines they have always been. Start off with gradual “aura” vision loss, accompanied by nausea, cold hands/feet, followed by pounding pain on one side of my head or the other, depending. They usually come in clusters of about 2-3, spaced over a few days.
        3. I don’t eat very much gluten and have gone days at a time without eating any, so I’d be really surprised were that the issue. I never notice much of a difference to my system with regards to what I eat. The fatigue, along with hair loss, sensitivity to cold, insomnia, loss of appetite are all relatively new symptoms to me, all starting right around early August. Prior to that everything was fine other than my migraines, the irregular and long menstrual cycles, and my pregnancy progesterone deficiency.

        • Honora says

          Despite all that, It may be worth going without gluten for a month and seeing how you feel and then introducing it after a month. Confession: I’ve never attempted this with dairy. For me it’s easy to skip gluten but going without the dairy stuff is another matter altogether…plant food in the hot drinks just doesn’t cut it. Luckily we have A2 milk available here at only twice the price!

    • Fern says

      When I was in my later child-bearing years I had PMS migraines. I had miscarriages which were preceded by migraines. Later I noticed that the migraines occurred when I was not getting what I needed to build strong bones. By then I had osteopenia and was taking medication for it, but would get a migraine if I missed a dose or if I failed to get enough calcium, vitamin D, or the micronutrient Manganese which has been associated with osteoporosis.

      I had a book called “Menopause” which talked about the need for extra natural progesterone during menopause being a precurser to various estrogens and other hormones. It also warned against the various progestins that are created by drug companies that differ from the natural version so they can patent it, but fail to work identically in the body. It also mentioned that progesterone helps the thyroid function better. I also know that progesterone counter balances estrogen and estrogen is something that binds to the thyroid hormones causing a smaller amount of total T3 to be left in the biologically active “free” state.

  70. Dot McMurtray says

    I was shocked to read this article. I’ve been on time-released cytomel for low T3 for 10 years. 2 years ago I had an unexplained cardiac event, an episode of ventricular tachycardia where my heart stopped and I collapsed, which luckily I survived. There was never an explanation for this that satisfied me until I read these articles. I printed them out for my oh-so-casual doctor who put me on this med without even repeating the low lab results. Instead she’s tried to refer me to cardiologists for a one-time incident.

    • Fern says

      I am on Liothyronine (generic Cytomel) one 5 mcg tablet per day (not time-released) which I take in a divided dose (1/2 tablet with breakfast and the other in the early afternoon. I couldn’t have taken that much at first, probably because the reason I had trouble in the first place is that I have autoimmune antibodies for both Graves’ Disease and Hashimoto’s Thyroiditis, so when I took 1/2 tablet for the first time taking the L-T3 it was a huge jolt to my system. In about 3.5 hours my heart rate went from about 60 to 94. I knew the hormone could do that, since I had the fast pulse before I was treated for GD, and having read as much as I can from as reliable sources as I could find.

      It was after having been treated with Methimazole (MMI), an Anti Thyroid Drug, and becoming “euthyroid” but with my Free T3 levels near the bottom of the normal range, either slightly above it or slightly below it, that I asked my Endocrinologist for thyroid supplementation. I was in misery, but he made one excuse after another for not treating me. He was the second Endo I had seen, and he told me that Endo #1 had made me hypothyroid, and he would be careful not to do that by starting with a low dose of MMI and building up from there. It was still very much a struggle being treated with the ATD, but worse when the GD was resolving and I could no longer decrease my dose. I was desperate to get more help and went to Endo #3 for a second opinion. She was the one who clarified to me that I had both types of antibodies present, but she was unwilling to prescribe even the smallest dose of Levothyroxine because it might make me hyperthyroid again. She was out of state and an eight hour drive away, but she said she would see me after a year, or sooner if my symptoms or labs showed a need for more immediate treatment, and wrote a letter that I could show my PCP to have him run the labs.

      I tried to return to Endo #2, but he dismissed me as his patient because I had gone elsewhere for a second opinion. Partly because of that, my PCP was willing to manage my thyroid. I showed him the letter, telling him it made me feel like I was walking a tightrope between the GD and HT, but I didn’t think any doctor could walk it for me, and I just wanted the means to do it myself. He agreed, and we discussed treatment options.

      I wanted the L-T3 treatment because my labs showed I was lowest in T3 and because it seemed like it would be easier to “walk the tightrope” if I had immediate feedback as to whether I was taking too much or not enough, and I knew that L-T3 is both fast acting and with a short half-life of about 24 hours. I planned on taking my blood pressure every morning before breakfast and especially watching my heart rate because I thought that would be the most dangerous sign if I was getting too much liothyronine.

      After the first jolt of L-T3, which actually made me feel like a new person, I skipped a day and went down to a quarter pill the next day. It also seemed like too much and I skipped more days, becoming rather haphazard with taking the med. When I saw the doctor again after 6 weeks and new labs, he helped me determine a more reasonable dosing schedule, so I would start out with an eighth pill daily for a week and increase the dose weekly by eighth tablets until it seemed too high and I would return to the next lower level. In actuality, I needed longer than a week to stabilize on each size dose, at first. Later, I could manage a quarter-pill increment, and after only a few days on the previous level.

      At my next doctor appointment at the end of September, he prescribed 50 mcg Levothyroxine for me to take along with a whole L-T3 pill daily to more fully stabilize my hormones. I felt good on that level for a while, then added another quarter pill in the afternoon. That seemed to be too much so I shifted to the 1/2 pills morning and afternoon.

      I believe all this slow back and forth adjustment is necessary and has actually helped the GD attack subside. I suspect that it has a lot to do with how I am able to better tolerate the dose I need and stay in the normal range with my labs.

      • Rick Paquin says

        Fern, what you are experiencing with endocrinologists is common. I can’t figure out how they can practice the way they do. Hiding T3 results from the patient is also routine, unless you demand to see it. Then come the excuses when you start asking about it.

        Your on the right track but I would urge you to find a doctor that properly prescribes T3. Any doctor that would have you take 1 non-compounded pill per day, when the pill only has a known active working time of about 3hrs is not good. You need to be on a steady 24hr T3 dosage, only possible by compounding. I think you are currently on a roller coaster with your current dosage and that’s why you can’t get the true benefit of T3.

        • Fern says

          Thank you for your comment. Sorry, my roller-coaster doesn’t allow me to get straightened out.

          I was feeling fairly well until I had my blood test toward the end of November. My free T’s were in the normal range but my TSH was zero (0.009), so my doctor sent me to another endocrinologist. He wanted me to quit the Cytomel cold turkey, and I had already lowered it, and the levothyroxine a little before I even saw my doctor after the blood test. This Endo #4 tested me at the end of January, which showed I was at 0.17 TSH, I think. Still he wanted me to lower my Cytomel to 2.5 mcg and I have felt awful.

  71. Cat says

    I was on 62.5 Synthroid and 15 Cytomel (which may have been a bit high?). Then TSH increased to 3.9 last month and MD increased Synthroid to 75. Cytomel remained the same. I was hypo at that time. For the past couple of weeks and in particular for the past week, I started feeling extra exhausted but like I were “drugged”. I reduced Cytomel to 10, 2x per day just following my gut. I watched closely this weekend and it became clear by Saturday afternoon that within 1 hour of taking both morning and afternoon Cytomel dose, I was hit with this drugged feeling and overcome with exhaustion. Today I did not take either Cytomel dose and felt much better. Wondering if I could have Reverse T3 Dominance which I am just researching now – and it causes hypo symptoms. Is this the same think you are talking about here? Not sure what to do – decrease T4? stay off Cytomel? Not sure if anyone reads these posts. Thank you.

    • Faith says

      Hi Cat,

      Your symptoms sound very much like mine…feeling drugged and sleepy when on too much. Ironically, it is extremely similar to the feelings of too little thyroid as well (or at least we use the same words to describe both).

      Taking T3 (Cytomel) would by-pass the RT3 issue (we make RT3 from T4)…so should make you feel better rather than worse. For what it’s worth, I get the same feeling after taking most T4 meds including desicated thyroid…except from one, Tirosint. Tirosint is a relatively new T4 and has no fillers. Many of the other manufacturers use fillers that may be a problem and some, like Armor, often use fillers that interfer with thyroid function (you’d think they’d know better, but such is the world we live in).

      Two thoughts…one is that it is possible that your body has set your thyroid level needs lower. There are many reasons that the body does this (age, lack of sufficient food, illness…even low-grade, barely noticable illness). If so, then your levels might look low…but really be fine for you.

      The other is the myriad of thyroid receptor issues…RT3 being one of them. Too much T4 can cause increased conversion to RT3 to get it out of the way…body set point lowered will increase RT3 conversion (which by the way takes place in the liver). As you have read, too much RT3 docks in the receptors and will prevent T3 from getting in. The classic signs of this are normal T4 and normal T3 levels (high (over the range) RT3 levels) and high TSH (the pituitary requesting more thyroid hormone).

      Another possibility, like RT3, is the active form of Vitamin D (which is another endocrine hormone)…Vitamin D Receptors and Thyroid Receptors are one and the same. There are numerous conditions that can make the endo hormone known as Vitamin D an issue…(genetic, illness, or taking Vitamin D). The Vitamin D we take (whether D2 or D3) is not-active (similar to T4) and must be converted by the body into the active-usable form (like T3). Unfortunately, the tests that they run for Vit D levels is the 25-D test and this ONLY tests the non-active form (like T4). The test you want to run WITH the 25-D test is the 1,25-D test (the active form, like T3). Those who have bacterial infections (even very low grade and barely noticable) or a genetic predisposition to make TOO MUCH of an enzyme called CYP27B1 that over-converts 25-D into 1,25-D…leaving a person to ALWAYS look low on the 25-D test but, in fact, be too high in 1,25-D. The problem with this is the shared receptor…and that 1,25-D (the only usable form) will “displace” T3 out of the receptors. So, if not RT3 it might be 1,25-D.

      In addition, there can be genetic mutations to the thyroid receptor itself…forwhich neither I nor the internet can help you much there (yet). However, you can (if you want) do the 23andMe.com genetic testing…and then search the raw data for the thyroid receptors (THRA and THRB) to check for mutations.

      That said, your symptoms sound exactly like how I experience too much thyroid hormone (I don’t have a thyroid so am totally dependent on what I take). The only difference I have found over the years between too low and too high is I get weepy and my pain levels raise to unbarable levels when I am too low. And yes, it sucks…that drugged feeling is really yukky in my humble opinion. The challenging part is that our needs for thyroid hormone fluctuate…the only blessing in my case is that I take T3 only so I take multiple times a day and can adjust dose by dose. Sorry you are going through it, good luck on your search.

      • Cat says

        Hi Faith! Thank you so much for your response. After increase of T4 from 62.5 to 75 and decreasing Cytomel from 15 to 10 my labs moved from/to: TSH 3.9 to 3.5. T3 1.9 to 1.9 (R1.9-3.9) and T3 0.8 to 1.0 (R 0.7 to 1.8) which makes sense with a bit more T4. I was off Cytomel for 2 1/2 weeks and felt better then ever (but had also stopped caeffine coffee the week before). MD put me back on Cytomel but after 10 days I stopped it again. “Drugged” in the sense of “sedated” is the reaction. It is crazy cuz have posted on several thryoid groups and not one person related. My system is sooo sensitive. Wonder if I should try Tirosint?. But do I need to worry about T3 then? Armour has fillers too as you said. I go back to have new labs Dec 2 and that will be after being off Cytomel completely for 3+ weeks. Will also ask for the 2nd Vit D test as I was deficient and take Vit D3 supp. Thank you!! Cat

        • Faith says

          Hi Cat,

          I wish I knew what caused the drugged feeling. Mostly just chalk it up to being on too much at the moment and cut myself back (like 1 or 2 doses).

          That said, there are times that I def feel like I am not getting enough…like it is in my blood but I am not using it. This I chalk up to the genetic stuff that i have just been finding out. For example, I have many defects in genetic instructions for my thyroid receptor. Not sure what that means exactly, but it reasonably makes sense that this might be why sometimes I don’t seem to make use of enough.

          The liver is very involved in clearing the excess thyroid hormone. I have low-grade liver stuff (recent in the last 6 months). Part of being sick I guess. That said, doctor today looking at my labs from my genetic stuff made the connection of my not making enough glutathione…and glutathione, she says (not sure about this one yet), is a detoxifier or detoxifying agent of the liver. My own drugged like feeling when on too much T3 leads me to wonder if the feeling is not some kind of protective device of the body?? Like maybe the excess gets tagged for deletion, but instead re-circulates, and that tagged piece makes for the sick feeling???

          Anyways, I don’t know…but you are so not alone in this.

      • Honora says

        Hi Faith or anyone out there in the blogosphere. Picking your brains again You referred in the above post to a couple of genes that can affect Vit D levels. Mine’s always been on the low side (13 whateveritis). I browsed the 23andme raw data as advised and came up with 1 heterogenous mutation out of about 20 SNP’s for theCYP27B1 so I don’t think that’s too significant. However for the THRA gene I had 4 out of 8 heterozygous SNP mutations. For the THRB gene I had approx 65 of the above out of 240 SNP’s .

        I read a few of the eye glazing articles on Gene Scholar. Do you know how significant these proportions of mutations are? Just realized I haven’t analyzed the data to see if I have homozygous mutations. That’s going to take forever… I guess like the methylation pathway mutations, some of these mutations are more serious than others.

        I’ve got subclinical autoimmune thyroiditis and before I commenced thyroid hormone replacement 2 months ago, the T4 and T3 levels were on the low side with the TSH around 4.5 and positive but fluctationg antibodies. I’ve been diagnosed as being severely deficient in iodine but am eshewing it as a trial coincided with my antibody levels rising despite taking 3 brazil nuts/day along with zinc and magnesium.

        Unfortunately here in New Zealand, I can’t find a way around the fact that a RT3 level has to be sent off to Australia to be measured and I don’t see any doctor here ordering a 1,25D level as they cost around $400.

        On STTM, I saw a calcuation for RT3 consisting of subtracting the FT3 from the Total T3 level but I can’t see how that would be possible as Total is bound and free T3 I assume, so that would only give the level of bound T3, not RT3 surely? Any thoughts on this?

        Finally, on 25mcg Synthroid and 10mcg SR T3 daitly, the thyroid hormone levels came back virtually unchanged but the TSH dropped down to 1.82 so at least it appears I’m being compliant to the doc! I take them half an hour before breakfast with a glass of water.

        • Faith says

          Hi Honora

          *Waves all the way to New Zealand*

          First let me acknowledge that you are way ahead of most on these subjects.

          The Vit D issue is that they test the inactive form (sort of like testing T4), but as you say, it is costly and inconvenient to get the 1,25 D test run…so you may just have to speculate. I don’t see a major issue in supplementing unless you have a bacterial infection (like Lyme) or an autoimmune condition…in which case you would want to consider your choices maybe more carefully.

          Genetic Genie runs a free “methylation report” from the raw 23andMe data. However, what I have learned is that all the information being pulled is from studies…and as such is not complete. For example, the MTHFR gene that everyone was all on about last year…instructs the making of the enzyme that adds a methyl group onto folate. Many had a double mutation. That said, you’d think (just logically speaking) that by mid-age they’d either be dead or some other enzyme does the same job. At least that is what I figured. My doctor in this likes to do what all the so-called experts say, but after many failed trials, I asked to just test the things the Genetic Genie report said were affected…to see what, if anything, was really being affected. This was the single greatest thing that yielded true answers to what was going on. However, the side effect of which is that I am much more skeptical of what the so-called experts hypothesize.

          Like you, I see a number of single mutations on my report as well…and have yet to figure out what constitutes a double mutation on the others…so wish I had more information for you there. Hear you on the eye glazing articles. What I have taken to doing is reading studies only so far as they explain how we make or unmake things…in other words, as to how things actually work. What I have learned is that the “receptors” are in essence one receptor that does multiple functions. I do not know of anyone or anything that fixes receptor issue though.

          Regarding the RT3, I don’t see any merit in the calculations that were espoused by some sites…the body will make some, and will make more or less depending on the situation. For example, when one is sick, one makes more. All of which are normal and self-correcting. The issue comes in when one is chronically sick, or sick with some low-grade issue that they may not even know about and have RT3 over the range all the time. People are refuting it, however, the function of RT3 is to regulate our system…thus docks in the receptors in the same way T3 does…and can cause a situation where blood levels or T4 and T3 look normal but are unable to be used at the level one needs and thus one is still hypo. High levels of RT3 would be beneficial to those who are hyperthyroid, I would think.

          That your levels come back unchanged, my guess is that your body (namely the hypothalamus/pituitary) has set your levels at this level. In the presence of too much hormone, the liver sweeps the excess and marks for excretion in order to keep the status quo. Which suggests to me that the issue is not in your thyroid per se.

          If it were me, I would question the iodine dx…assuming that you are still making thyroid hormone (which would be the true sign of low iodine). The iodine one takes is not bioavailable, even in the brazil nuts…and must be converted by the thyroid into an iodine that is bioavailable. Incidentially, the thyroid stores iodine. T4 is one thyroid molecule with 4 iodine molecules. The liver (primarily) cleaves a single iodine off to make T3…that cleaved bioavailable iodine is then reused. You might look into the testing methods and see what you can find. Along this long journey of health, I have found much to my dismay, that lab work is so hopelessly flawed that it is any wonder we (and our doctors) could know anything. Also, if you are without a thyroid…and/or taking thyroid hormone…you are already getting a full supply of bioavailable iodine (as T4 and T3 mean one thyroid and 4 or 3 iodine respectively).

          Also, the jaunt into genetics has taught me that everything we previously thought we knew about supplements is outdated and even potentially dangerous. Even the so-called genetic experts who has espoused taking methylated-folate often really hurt patients how have issues with methyl groups. What I have learned is to be extremely cautious and to trust my body.

          Ok, hopefully this helps. Hang in there,
          Faith

          • Honora says

            Thanks for the reply, Faith and the nice stuff you wrote. I ran the methylation report on genetic genie. Like most people on the planet i had a mutation, in my case a heterogenous mutation on the 1298, luckily no mutations for the COMT and only 1 heterogenous mutation for the CBS genes. My interpretation of this means it would probably be OK to trial methylated forms of Vit B12 and folate and see how I go. My homocysteine level wasn’t flash at 11 in a range from 5 to 15 though the biochemist I pester at work keeps telling me that if things are in the normal range, don’t be concerned…

            Most of the MTHFR, MTR and MTRR, VDR Bsm and VDR Taq are compound heterogenous too except for that A664A thank goodness. It all seems to point to issues with methylcobalamin, mine’s in the grey zone at 250, and folate. Mine’s OK but it’s only the plasma measurement, not the red cell folate.

            I suppose I could do as you have recommended and just get the specific levels measured e.g. ammonia and some neurotransmitters and maybe heavy metal toxicity e.g. aluminium but I’d need to track down a pretty special doctor to agree to all this. I think it would be a lot easier to trial the Vit B’s first.

            Unfortunately, Methyl-Life don’t ship to NZ so I’ll have to research and track down an alternative brand. BTW, I’ve forgotten what the T and G on 23andme are substituting for. Is it A and C, or C and A? I’m guessing C and A because I’ve got the wild form for the A664A and they say I have no mutations there with my alleles are GG.

  72. Teresa says

    I was told I have a thyroid that was not functioning and 2 doctors were surprised I was not in a coma because my T3 & T4 did not exist. My symptoms were so severe (yet classic hypothyroidism) that in a 12 year period of time I was mistreated and even put on lithium. With lithium in my system…I believed I was crazy. Here I was being told I had hypothyroidism not bipolar. Happy days again. The doctor started me on Synthroid 75 and within a few months I was taking Synthroid 150 and still my symptoms were present with little improvement. At this point I added Cytomel 25. Wow, I was feeling more myself again. My symptoms were now tolerable and I could cook dinner and eat without having to take a nap. Now some 5 plus years later my symptoms are slowly rearing their ugly heads again. I know what this is so I go see a doctor that decides to cut the Cytomel 25. (I have moved to a different state and due to insurance had to find a new doctor). Within 24 hours I knew I was going to the place I swore I would never go to again. Promising my doctor to be a quenie pig I continued not to use Cytomel for almost 3 weeks. The downhill sprial was horrible. I started researching again I put myself back on the Cytomel and this time I took half in morning and half in late afternoon. Within 12 hours I felt the headache ease and my brain now had glasses on and could see thru the fog again. Never again I said. So now I recently saw a endo dr. who is upping the Synthroid to 200 and wants to discontinue the Cytomel. After many tears were spilled at the dr. appt. I agreed. 10/5/13 will be my first day. The dr. assures me I will feel better and will “bridge any gaps” if necessary. I’m so confused about all the research and I have absolutely no trust in any doctor. It’s all an “EDUCATED GUESS” for them with little regard to how I feel. When this all began and I was told I would have to take pills for the rest of my life I asked the doctor about diets, supplements or anything else before parmacutical treatment. I was told there was nothing. I now know that was untrue as well. After the few weeks of stopping and restarting Cytomel, I am scared I will go down again and not be able to get back on Cytomel.

    • Fern says

      Did these doctors have any excuse for wanting to take you off the Cytomel? Why did you agree? I know it is hard to find a doctor that will treat you right, but maybe it is worth it.

      Even in the worst case scenario with high blood pressure, fast heart rate, and hyperthyroid results on the blood test, I would expect, possibly even demand to only reduce the dose, not go off of it entirely in one fell swoop.

      I feel like I volunteered to be a guinea pig in the positive direction. Treated first with the Cytomel 2.5 (half of a 5mcg tablet) and finally building up from 1/8 tablet to a whole 5 mcg last week and adding Levo-thyroxine 50 just today. It seems exactly right to me so far.

    • Fern says

      Also, Teresa, did you consider that taking the Cytomel late in the afternoon, your TSH may be more suppressed than is good for a clear picture of what your thyroid is really doing? (I guess you’re really saying your thyroid isn’t doing a single thing, anyway, right?)

    • Faith says

      Teresa, omgosh my heart goes out to you with this.

      Beyond what everyone else would say, two things you might consider. One is that (unlike what they say on the internet) it is (primarily) your liver that converts T4 to usable T3…and that your failure to convert enough suggests a possible issue with the enzyme that does the converting. To that end, it is our genes that instruct the making of the enzymes…and they are not impossible (confusing, but not impossible) to figure out. For this I would suggest you consider the 23andMe genetic test…and then search the raw data for the gene/enzyme that does the converting.

      The other possibility to consider, and you did not mention if you had tested this, is that the other possibility that the T4 alone isn’t working is RT3. Sometimes the liver converts T4 to RT3 more that T3…and the RT3 will dock in the thyroid receptors blocking them from T3.

      As well, you could have genetic issues with your thyroid receptors. This would cause (I believe) the fluctuating times that it feels like you are not getting enough thyroid. I go through this periodically and get very hypo. At those times it doesn’t matter how much I take.

      By the same tolken, our needs for T3 fluctuate.

      And you are absolutely right…it is all educated guesses…but try to take heart that even though relatively little is known about the human body, that they are trying to do the best that they can with what little they know. And yes, it is often times wrong. This can be very hard (I know) because we as patients NEED them to know.

      And I am sorry that Synthroid has really cornered the market on the treatment of thyroid. In an ideal world, taking T4 only does seem like the smartest and most logical thing to do…unless you are not converting it to T3 (or to too much RT3).

      The last thing, the thyroid receptor and vitamin d receptor are the same…and in certain conditions (genetic, illness, etc) people make too much of the enzyme that converts the vitamin d we take (think of it like T4) to the vitamin d we use (like T3)…so that we become hyper-d. It is called the “Vitamin D Reversal Pattern”…the test they use (like T4) will look low…and this is the test they use for EVERYONE…while the vitamin d we use (which they DO NOT TEST) is too high. The problem with the vitamin d we use being too high is that it floods the receptors and is said (in the studies) to “displace” the T3 from the recptors. So….if you are taking d, you may want ti get BOTH d tests done…the 25-D (that they ALWAYS test) and the 1,25-D (that they NEVER test)…so that you can see whether too much vitamin d might be causing your current issue.

      Hope that helps. Try not to beat yourself up…there is only a small handful of drs that will give you T3 (your current one obviously not one). Don’t worry, even the Mayo Clinic is against T3. Hang in there…and demand that they run the RT3 test with your other thyroid tests as they monitor you. And, if you can, get the dual D tests as well. If it is either one of those it would be the simplest solution (although, even with high RT3 few drs will consent to give you T3…and my RT3 levels were over 180 points above range and myself collapsing…and still it is a battle). My best suggestion is an integrative doctor if you can find one. Best of luck.

  73. Gina says

    Hi-
    Sorry to jump in so late on this thread! I was wondering if anyone else has experienced rapid weight gain on T3 medication? I see an integrative physician and through testing found I had borderline low t3 and t4, and my TSH was not elevated. I was also feeling very ill, dealing with gallbladder problems (I am gluten free), lots of nausea so I was glad to try something that might help…I began to feel better on the t3 and less nauseated overall, however I quickly gained 10 pounds, all in my midsection. I am relatively thin (went from 130 lbs to 140 lbs and I’m 5’7”) but the scale is continuing to creep upwards. I don’t think I am eating that much more than before so this is puzzling to me. Has this happened to anyone else?
    Thanks!
    Gina

    • Faith says

      Hi Gina,

      YES! I have experienced weight gain from T3. One of the little known (and subsequently little talked about) facts of too much thyroid hormone is a paradoxial weight gain. My guess, since none of my doctors shared the biological pathway of this mechanism, is that this is a way of the body clearing the excess hormone.

      Here is the challenging part…the TSH is the pituitary’s request for thyroid hormone. If all things are working correctly in the body…esp the pituitary and hypothalamus…this really IS the best read on whether more hormone is needed. And it is helpful to know that there are many reasons why one’s T3 and T4 may be on the slightly low side that have nothing whatsoever to do with the thyroid…for example, your gall bladder issues. When one is sick with something else…it is normal for the body to set the thyroid levels lower. Even though much of the general public dislikes the fact that biologically our bodies are set at when one has an illness they need to slow down and rest in order to heal…but this is the way our bodies are wired nonetheless…so when you are ill (esp low grade chronic illnesses) the body down-regulates itself…often by lowering thyroid levels. This doesn’t mean that it needs or even should be supplemented, however, (imho) suggests that the TSH should be very closely monitored more frequently.

      That said, there are other reasons for weight gain (and inability to lose) than the thyroid as well…such as high norepinephrine levels or def in taurine.

      The question is…on the T3, as you were feeling better, did you happen to get thyroid labs done? If so, did your TSH go down or stay the same (or did it go up)? Did your T3 levels change? This would be an important ‘tell’ in regards to what is actually going on. Also, did you have or were you recovering from a cold when you took the original thyroid labs?

      In a normally functioning body (even a chronically ill one), when the hypothalamus has set your thyroid levels low…your levels will stay low even though you are taking the T3. It will do this by producing less…and by clearing the execess with your liver…in order to keep the status quo that it set. IF that is what is happening with you…if your levels are still low despite taking thyroid rx…then it is not your thyroid…but rather something else.

      As someone who also has gut issues…and occassionally inflammed gall bladder…and the whole nine yards…it sounds to me more like the fluctuating ways of the gut for all of the above…just my thought. When the pancreas starts failing it can kick out excess insulin…which the body clears by making fat (why many diabetics are overweight). And yes, that will cause extremely rapid weight gain (and loss). What the drs told me when they ultrasounded my gall bladder in response to my question about how to not-develop gall stones, was to eat less meat…fwiw. High dopamine levels will cause you not to feel hungry…and even nauseated. For me, I feel repulsed by food when my gut is acting up. And I know, from my own experience, that the weight gain I get is NOT from eating food since I struggle to get my caloric intake up to 500 cal a day. The times I have been on too much T3 (I don’t have a thyroid), I gained weight…it was the only symptom that it was too high because all the other symptoms were the exact same as too low T3. Also, too high will elevate your Alkaline Phosphatase…which you may also want to check…means your bones are starting to demineralize (side effect of too much T3…and one’s liver not-clearing it).

      Also…are you on Armour or other dried thyroid gland??? Many people feel ill on thyroid from the fillers…and some of the companies use fillers that supress thyroid function.

      Anyways, hope that helps provide some insight. Please feel free to ask.

      • Gina says

        Hi-
        SO nice to know I’m not the only one! Since this has been happening to me, I’ve been scouring the internet for answers and stumbled upon this website. I really appreciate your feedback. I mentioned the steady weight gain to my Dr., and she seemed puzzled and had no advice. I had assumed that with the T3 medicine (It’s slow release T3, 10mcg) that my energy levels would improve and I would feel stronger and more like my old self, when I had almost too much energy. Initially, I did feel much better, even though I kept gaining weight while eating the same, or maybe even less (I’m gluten free and almost 100% primal/paleo.) She tested me once after I started the meds and I went from 2.3 to 2.5 as far as my T3. It’s only been 4 months since I started the medicine. Also, she prescribed Cerefolin at the same time because she found that I had a MTHFR genetic defect. So I don’t really know which one was making me feel somewhat better, and fatter ;)
        So I think you are right about the pituitary/hypothalamus being off and not really the thyroid. Also, I didn’t have a cold or anything when tested, and my thyroid numbers have been about the same (borderline lowish) for the last two years; mainly I thought I’d go ahead and try the medicine because I had been feeling so weak as of lately, etc.
        The gallbladder issue has been a steady problem for about 3 years, and I can control it as long as I avoid gluten and most grains in general. Honestly, I’ve had horrible stomach aches for 15 years and ignored it until I started having IBS type symptoms. I didn’t want to have my gallbladder removed because all of my tests and ultrasounds of the GB were always normal, although it had gotten bad enough that I developed pancreatitis once, and even then all of my blood work was fine so I never had to be hospitalized thank goodness! The GI Dr’s would not listen when I told them I thought it was gluten that was making me ill. I had an upper GI, and the small intestine biopsy showed lymphocytosis (intraepithelial), and then my 23andme.com test showed I had a trait towards being celiac. So that convinced me 100%, no gluten ever again.
        My father died of pancreatic cancer at a young age, with no known risk factors. I’m trying to get to the bottom of all of this so I can be extra careful in case something serious is in it’s early stages, especially since I have a 2 year old little boy and I want to be here for him!
        The only other tests that I’ve had that were abnormal were a positive ANA (only 1:80), and I also found out that I have several other MTHFR polymorphisms (besides the one my Dr. found) from my recent genetic test.
        I decided to stop taking the slow release T3 about 3 days ago; now I have a cold/sore throat but may be a coincidence. It would be nice to get to the bottom of this, as to whether I have an autoimmune problem, or is it just the celiac issue, or something else!? I have read Dr Amy Yasko’s book about methylation defects and may use that approach to try and heal my “gut”.
        Thanks for your input and advice!

        • Fern says

          I am also of the opinion that having sufficient thyroid hormones in your system, especially T3, can help keep us from catching colds, etc. and help the body resist secondary infections.

        • Fern says

          Also, the reason I was tested for TSH levels after age 52 was because my ANA tests came back 1:1280 and I was diagnosed with Lupus. My ANA came back into the normal range, though, before I was diagnosed with Graves’ Disease at age 60.

        • Gilliana says

          Hi Gina,

          I was just wondering if you have been checked for Helicobacter pylori (H. pylori) infection? H. pylori causes a stomach infection that results in stomach aches (especially when hungry) and can predispose to food intolerances because the H. pylori causes holes in the stomach lining that let whole, undigested food molecules get through into the blood stream.

          Depending on your genetic tendencies, undigested food molecules in the bloodstream can result in the development of food intolerance causing diarrhea or even autoimmune conditions.

          For example, gluten is a food molecule that some people have found to bring on autoimmune conditions and/or make them worse. A google search on
          gluten “palindromic arthritis” OR “rheumatoid arthritis” OR lupus
          shows that for some people, cutting out gluten results in improvement in symptoms of PA, RA, or lupus. – here’s an example of one person with a diagnosis of lupus – http://kriscarr.com/blog/the-lupus-and-gluten-connection/ .

          Similarly, a search on
          gluten thyroid disease
          finds postings from people who have found that cutting out gluten results in improvement in their autoimmune thyroid condition – e.g., http://blog.cleanprogram.com/a-gluten-free-girl/ . These observations are supported by this review ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695884/ ) indicating that H. pylori may be linked to the development of thyroid disease.

          H. pylori is also linked to severe nausea of pregnancy, stomach ulcers, stomach cancer, reduced absorption of B12 and iron, and more – including, apparently, reducing the absorption of thyroid hormone ( http://www.jgld.ro/2013/3/4.pdf ).

          In case any of this is helpful -

          • Gina says

            Hi-
            Thanks for the links; I will check them out. I had an upper GI, during which they tested for H. Pylori and it was negative…I was surprised, actually! I had just assumed that I would have it!
            I’ve known for about 4 years that gluten was not my friend, however it took a long time to convince myself because my Dr’s would always tell me it was unlikely to be causing my symptoms. Luckily I listened to my instincts!
            Gina

            • Gillian says

              Hi Gina,

              If the test done for H. pylori was a biopsy or a urea breath test, both can be false negative when you have an H. pylori infection but something is suppressing the activity of the H. pylori. Here is full text of a recent review article with everything you ever wanted to know about H. pylori and a lot more you probably don’t ( http://70.86.17.143/~dnoom/images/PDFs/Gut-2012-Malfertheiner-646-64.pdf ) – the part of interest says, “. . . serology is the only test which is not affected by local changes in the stomach that could lead to a low bacterial load and to false-negative results of the other tests. This is owing to the fact that antibodies against H pylori and especially against its most specific antigen CagA, remain elevated despite transient decreases of the bacterial load and even for long periods (months, even years) after the disappearance of H pylori from the stomach.”

              This also means that if the blood antibody test (serology) shows that you do have H. pylori and you are treated, serology won’t tell you if the treatment worked or not. Therefore, your doctor will want you to have breath testing (or stool testing) to find out if treatment worked. To make sure the breath testing (or stool testing) doesn’t miss any surviving H. pylori bacteria, you need wait at least 4 weeks after the H. pylori treatment is finished so that any H. pylori that weren’t killed will have time to recover from the acid-suppressing drugs and antibiotics enough to show up on the breath (or stool) test.

              I know what you mean about current medical practice not picking up on symptoms caused by gluten. I stopped gluten because I was diagnosed with palindromic arthritis and was told the only treatment was painkillers, that there was no treatment that would fix the problem. In searching for more information, I found postings by people with palindromic arthritis who got better when they stopped gluten, so I thought I’d try it. Not only did I stop having flares of palindromic arthritis, to my vast amazement, the “irritable bowel syndrome” I’d had for a couple of decades went away overnight. (At least, 90% of it did – and without that 90%, I was then able to figure out the other foods that gave me GI symptoms and stop eating those other foods as well.) And this is totally embarrassing but I have to confess two things: first, I am a doctor so you’d think I’d be better at figuring out stuff like this. (I wish!!) And second, about four years before I stopped gluten, I did wonder about gluten intolerance and asked to be tested for it. I had an anti-tissue transglutaminase (aTT) a test, which is used to test for celiac disease. The result was negative and I believed that meant I wasn’t reacting to gluten, so I didn’t try going off it. It would appear that there are forms of gluten intolerance that aTT testing doesn’t pick up.

              Like you, I think it’s a really good idea to pay close attention to one’s instincts . . . .

              Gillian

    • Fern says

      Hi Gina,

      From the time I was 18 until I got married at age 33 I was a very thin 132 lbs nearly all of the time, being 5’6″, so it seems like I should be able to relate to you.

      I have had hypothyroid symptoms off and on for my entire life, but I wasn’t diagnosed with it because my TSH was never high enough, if that was even tested before I was in my 40’s. I was never told it was.

      I asked for a thyroid test when I was about 23 or 24, but it seemed like my doctor didn’t see a need for me to be tested, if he tested me anyway I don’t know because in those days we didn’t even know the names of the medications we were prescribed. I was tested in my mid-40’s, told I was “normal” and tested every year after age 52 also with “normal” results.

      When I turned 60, 5 years ago, my TSH dropped nearly to zero, but my FT4 was barely 0.1 above the normal range, so I didn’t need treatment right away. When I did start seeing endocrinologists I got over-treated and was made hypothyroid. I was hypothyroid per FT3 but normal with TSH and FT4 when I was able to stop the anti-thyroid drugs last December, but felt awful and began to gain weight with little or no appetite and forgetting it was even time to eat.

      I went to my Endo #3 in May this year, and in June I went to a new MD who seems somewhat trained in Integrative Medicine. The new Endo let me know that there was no defect shown in my pituitary but I had antibodies both stimulating the thyroid and destroying it. The new MD put me on the L-T3 5mcg tablets with instructions that I could have up to 2 tablets daily, depending on how I feel. I took a half of a tablet, which was both a huge jolt to my system but a feeling of finally being able to function like a normal person again.

      It was so good, I didn’t feel a need for another one the next day. I tried to regulate myself according to how I felt, but I ended up taking ever smaller portions of the pill until I figured out how to get them as small as an eighth tablet. When I returned to the doctor in 2 months, he could see I needed to be more consistent and let me build up from 1/8 pill daily for one week, increasing to 1/4 pill the next and so on by 1/8th pills, each week. In actuality, I took longer to go from 1/4 pill to 1/2 pill at the time of my next labs, then I increased to a whole pill over this next week and saw the Dr. again this afternoon.

      With that in mind, I will tell you what happened to me with my weight.

      From 1983 weighing about 130 lbs. until 1988, I had four children and didn’t think much about my weight because of the ups and downs with the pregnancies, but during my third pregnancy, I was confused and, while trying to “eat healthy”, I stopped eating foods with additives like nitrites and food colors, not thinking about replacing those foods with healthy alternatives. I became very tired and sluggish and spent most of the days on the couch, becoming even too tired to go to the kitchen and fix myself something to eat. I was due January 8th and during the preceding holidays I got dairy egg nog and guzzled it. My daughter was the heaviest baby I had had: 7 lbs 3 oz. and I had gained a layer of fat over my abdomen which never went away. I was sick, pale and jaundiced with brittle hair, after she was born but the doctor couldn’t tell me what was wrong, except that I had high cholesterol and should go on a low-fat diet, and unlike my husband I had no sign of infectious mononucleosis. During the next nine months I had a cough nightly. My doctor asked if I was pregnant and I said “No,” because I hadn’t had a period, so he prescribed Medrol. It stopped the cough and made me feel very energetic, but another nine months later I had another daughter. I was 40 and wanted more children but had 5 miscarriages after that.

      Anytime I would try to lose weight after that, I never lost more than 5 lbs but it was followed by a gain of 10 lbs. until I weighed 200 lbs at age 59. Just before my 60th birthday I tried a different kind of diet which had very few restrictions: No caffeine, no alcohol, and no sugar substitutes. Just eat 3 meals with Water, Veggies (except for breakfast,) Whole Grains, Protein, and Fruits along with desserts, fats and sweets; and 3 snacks of Water and Veggies.

      I not only lost weight (about 10 lbs in about 12 weeks), but I also had more energy. Then, I was diagnosed as hyperthyroid. I was also scheduled for a colonoscopy which reset my appetite and ability to eat down to a minimum so I could no longer keep up with the diet and I regained some of the weight. Yes, this is also paradoxical that I should have lost weight eating more and gained weight eating less, but that was the way it was.

      Under the anti-thyroid drugs, I gained up to about 206 lbs. I rebelled against taking the ATDs and weaned myself off of them in early spring 2010 and didn’t return to that Endo #1. I spent a pleasant summer having a reasonable amount of energy and some weight loss until I was coerced into going back to an endocrinologist. I went to Endo #2 who was more reasonable than the first, but still I suffered a lot and gained up to at least 212. Eventually I started a weight loss program that involved both diet and exercise, and got down to 196, but I had trouble maintaining it.

      From April to December 2012 while on decreasing amounts of anti-thyroid drugs I gained from 197 lbs to 202 lbs. Then I went off the ATDs again, this time with the Endo’s agreement. I still felt Hypo, though, and the Endo would not give me supplements. I felt worse and worse, had low T3, and lost a few pounds at first, but then started gaining again. In January this year I weighed about 199 and increased to 205 by the first part of June.

      I started the Cytomel on June 17th. and gained another pound, but then started losing slowly as I became more stabilized in my eating habits, etc. until weighing about 202. After becoming more regular and with smaller dosages of the Cytomel, my weight has continued to drop to 199 in these last 6 weeks.

      From my experience, the weight gain or loss isn’t due to the Cytomel alone, it needs to be coupled with a healthy, non-restrictive diet that emphasizes balance and variety and plenty of water, as well as reasonable amounts of exercise. Also, I believe too much Cytomel is like too much dieting or too much exercise, which doesn’t work for those of us who are not prone to being anorexic. In short, I believe that the thyroid controls weight loss but not in the way you might think. You have to try to eat MORE than you burn, in order to BURN more calories than you consume. As far as I know, though, I am the only one who thinks that way. :)

      Also, in my opinion, the smallest dose of L-T3 is way too strong for someone who is very low to take all at once without a gentle buildup and adjustment time.

      I am going to be starting on Levo-thyroxine (L-T4) in addition to the Liothyronine (L-T3) now that I have seen the doctor again.

      • Fern says

        I forgot to mention that my doctor wanted me to take my weight divide by 2 and drink that many fluid ounces of water per day. Even though I don’t usually make it to 3 Liters (100 fl. oz.) I am doing much better at it, which would have been totally impossible before taking the very low doses of L-T3.

        Any weight loss I have had may be attributable to the water.

  74. Rita says

    Although I’ve been dx with both Graves and Hashimoto’s and constantly fight hyperthyroidism, I’ve needed to be on Synthroid but it was the T-3 that gave me back my brain and personality. Yet, the fluctuations in test results are constant and I’m always re-adjusting and trying to balance out…

  75. Fern says

    Chris,

    You started this blog in November 2011, and asked the question: “Have any of you tried thyroid replacement for Low T3 Syndrome? If so, what was your experience? Please let us know in the comments section.”

    Are you still interested in the responses or have things changed over the years?

    In case you are still interested (and I have included a more complete history in other comments of mine), I have now been in treatment for low T3 in connection with both GD and HT, having both types of antibodies present, for about 3 months.

    At first, trying to get the proper dose was difficult, and I started out with 1/2 tablet, ie 2.5 mcg. It seemed like a huge jolt to my system and I didn’t take any the next day. In fact, I learned to cut the tablet into pieces as small as an eighth to try to get the right dose. Even then, I only took it very sporadically until my next blood test. The test showed minimal improvement in my T3 levels, and my doctor insisted that I try taking it daily, starting out with the eighth tablet and increasing my dose by 1/8 tablet each week, with the idea that I would decrease to the previous level if I had symptoms of becoming hyperthyroid, principally based on my BP and resting HR, averaging three times in a row.

    When I went up from 1/8 to 1/4 pill, I felt good, but the following day I forgot to take it, or any of the other pills (OTC vitamins, minerals, and supplements) that morning. The same thing happened when I increased my dose to 3/8 of a pill, but I had actually taken the 1/4 dose for longer than a week so I could get stabilized with following what I consider to be a healthy diet.

    I wasn’t sure which day I increased the dose to 3/8, but it seemed like I became more hypothyroid, possibly due to a reduction in the immune attack (TSI) but I am not being tested for that right now. It just seems like I wasn’t on the 3/8 dose for a full week, but I needed more.

    Today is the first day that I took 1/2 tablet again after my last blood test and I feel good–quite normal. I took my BP both before the L-T3 and about 3.5 hours afterwards. It was 106/73 pulse 69 at 10:00 this morning, and 121/68 pulse 78 at 1:37 pm.

    I am scheduled to go in for another blood test (fasting) next Monday (September 23, 2013.) I will update my report, if you care.

    • Fern says

      Here are my labs from last Monday and the one six weeks ago for comparison:

      Ranges: [T3 is listed as “total” but it is obviously free T3]
      T3, 2.0 – 4.4 pg/mL
      FT4, 0.82 – 1.77 ng/dL
      TSH, 0.450 – 4.500 mIU/mL

      September 23, 2013
      T3, 2.8
      FT4, 1.41
      TSH 1.040

      August 12, 2013
      T3, 2.9
      FT4, 1.43
      TSH 0.695

  76. Fern says

    Faith, I think you misunderstood what Marco was saying. I don’t think he was recommending taking T3 in order to lose weight, just saying that some people do that, and it “works” after a fashion, even though it probably causes more damage than good. No legitimate doctor I know of would ever prescribe L-T3 for the purposes of weight loss.

    I know that many of the hyperthyroid symptoms can mimic the hypothyroid ones–hence the need for blood tests. What you say about the dangers of taking the hormones otc, or without a doctor’s management of it is also true.

    What you said here, however, is contrary to my experience: “Taking T3 does NOT increase appetite…I know, I am taking it and have been cumulatively for nearly two years. I have zero appetite most days. Nor does T3 result in weight loss…because in order to do you you’d have to be successful at inducing a hyper-thyroid state…which the body will not let you do.” My appetite was seriously reduced before I took L-T3 and now it is more nearly normal.

    Also, I was a very skinny child and thin adult until I got married at age 33. During my third pregnancy, at age 38, when I got off-kilter in my eating habits and became very lethargic and like how you would expect someone with a “non-thyroidal” illness to become–I started gaining weight that never came off. After giving birth, both my husband and I were very ill. He was diagnosed with mononucleosis, and I was told I did NOT have that, but had borderline high cholesterol and to follow a low fat diet. There was no follow up. The doctor may have thought I just had a viral infection. In any case that was the beginning of my unexplained weight gain. I was very good at following a low-fat diet as instructed, at least for a while, but I lost only 5 lbs at most, which was immediately followed by a 10 lb gain.

    That weight-loss and gain cycle continued until I had gained about 60 pounds, along with continued lethargy, cholesterol problems, and 5 miscarriages until about 7 years before menopause. At age 60 I started a new diet that seemed to be a truly healthy one. I lost 12 lbs in 12 weeks, and was told by my gastroenterologist “No one loses weight in America;” meaning I must have something wrong with me. I had actually also just been tested for TSH and it was found to be practically zero. A subsequent test of my FT4 showed it barely above the normal range so I was not treated at that time.

    I had felt good while on the healthy diet, but I couldn’t seem to restart it after my colonoscopy. I got foggy headed and confused and when my doctor sent me a report of my labs with a note asking me to come in for a follow-up, and highlighted it, I thought he had crossed-through it instead, so I didn’t go back right away. The part of the letter that said “no treatment needed at this time” wasn’t highlighted so I thought that was the end of the story.

    I suppose I am getting too wordy. Sorry. I am just saying that I did lose weight when I was not very hyper-thyroid per FT4. Endo #1 made me hypothyroid with too much anti thyroid drugs and I regained the weight plus some. I went off the ATDs for the summer and lost some weight again. Endo #2 did things differently, explaining that #1 had made me hypo, and promising not to make me gain more weight. It was slower weight gain, but still an empty promise. I became “euthyroid” but had low FT3. Endo #3 explained things better than #2, but only inadvertently helped because Endo #2 refused to see me anymore and #3 was trying to watch me by remote control since she was far away, so my family doctor was willing to treat me. His take on it was that I am “not the textbook case,” and prescribed the liothyronine. I haven’t begun to lose weight yet, but at least I am no longer gaining it.

    Hypothyroidism can make you gain weight, sometimes water-weight which is hard on the heart. Hyperthyroidism can make you gain weight, possibly depending on something in your individual physiology, or perhaps because of Reverse T3 when you fail to eat as much as you are burning. I don’t really know why, but I know if I became more hyper I started gaining weight, and only lost the weight when my FT3 was near the top of the normal range.

    All in all, it is true that any of us who are not doctors, especially not endocrinologists, might be mislead by the stuff that is on the internet and may pass it on here. Maybe we need to post disclaimers….

    For myself, I should say “I am not a doctor, nor do I play one on TV. Whatever I say is based mostly on my own experience and may be subject to error.”

    • Faith says

      Fern,

      One of the problems is that there are too many variables. There is a vast difference between thyroid failing for no other reason than the thyroid is failing…and all the other reasons one has low thyroid. I am glad it helped you. That said, please don’t discount my experience either.

      My eating is not enough to be starvation as a cause of RT3, but neither is it too many calories…generally pretty low. As I say, I have zero appetite…so it is a challenge for me to get enough to eat. Indeed, i only lose weight when I can get calories up really high. No amount of taking T3 has increased my appetite…and indeed, when I took too much it was even worse…food nauseated me.

      You can be hypo-T3 as well…and as you said your TSH was very low…which means you were on too much T3. This suggests to me that your liver is not functioning ideally…or that you were comprmising it in other ways during that time. In short, you did create a disease state. As I said, my cousin lost (and kept off) 50 lbs in two days with super high blood sugar.

      There are a number of reasons for weight gain and inability to lose that have nothing to do with food intake or thryoid. For example, too high norepinephrine…or too low taurine.

      Soooo wish things were as simple as you set them out to be. :)

      • Fern says

        Faith,

        I appreciate your obvious concern and desire to help that is behind all your comments. Apparently it is also very difficult to get a message across clearly and the way we intend them to be in a short comment, or even in a long one.

        I understand that your situation is vastly different from mine and I do NOT discount your experience. I just want to let you know that there really ARE more variables than you SEEM to have acknowledged before. NOR did I intend to imply that my experiences or opinions are applicable to very many other people. I have simply stated SOME of them in the hopes that someone MIGHT also be benefited. I certainly have NOT intended to imply that I think anything about the human body and its function is SIMPLE. It IS very complex.

        You accused me of making blanket statements in another comment, but that is how some of your statements have come across to me. THAT was what I was trying to point out when I quoted you: “Taking T3 does NOT increase appetite…” If you didn’t intend that as a blanket statement, you could have said “Taking T3 does NOT ALWAYS increase appetite…” I have usually tried to use qualifiers in my statements to indicate that I accept that there is a wide variety of possibilities. I have NO bad feelings toward you, however, and am just pointing out this, to help you see how you MIGHT be coming across to SOME readers. Apparently, you really never intended to come across that way yourself, and I won’t hold it against you. If I also lack the ability to explain myself in a pleasing and appropriate way, please cut me some slack, too, OK? Thanks. :)

        • Faith says

          I did post links, you apparently missed them:

          http://edrv.endojournals.org/content/13/3/596.short

          Although about something a bit different…taking excess thyroid hormone (T3) in order to induce a hyper-thyroid state (in order to lose weight, as you say)…would be recognized as happen when the pituitary’s TSH is supressed…meaning that the body clearly does not want any more thyroid hormone as it has too much already. While we will disagree on your ability to successfully do this (as I contend that the liver would clear it), eiher way…suppressed TSH…

          …they say: “isolated TSH deficiency causes hypothyroidism and thyroid atrophy.”

          Likewise, anyone even thinking of taking T3 or other thyroid hormone (while they have a normally functioning thyroid, should have their Alkaline Phosphatase checked regulatly to ensure that they are not-demineralizing their bones. One of the causes is hyper-thyroidism:

          http://en.wikipedia.org/wiki/Elevated_alkaline_phosphatase

          Furthermore, I added (in regards to your studies):

          PS…your first link is a study about thyroid-supression therapy…usually given to those who have thyroid auto-immune. This is different than giving thyroid hormone. Apples and oranges.

          Your second study caps out at 56 days taking thyroid hormone. So…from that your best argument from this study is that you feel it is safe to take unnecessary T3 (for weight loss) for 2 months.

          Furthermore, this study only evaluated their TSH levels…which is the pituitary not the thyroid. So while their pituitary recovered…this has no bearing on their thyroid. This has far more bearing on their hypothalamus.

          Hope that helps.

          That said, I have NO WISH whatsoever to “prove” to you that giving people T3 for the sole purposes of losing weight is an unethical and dangerous practice…it is already KNOWN in the world at large to be a bad practice (even says so on the rx’s per endless lawsuits forcing it to be put on the inserts). Furthermore, recently there have been at least three posters who had no thyroid issues and yet were given T3 for the sole purposes of losing weight…and all three reported (here, in this very blog) that not only did it make them very ill…none lost any weight as promised. That speaks louder, in my view, than your studies. Likewise, my own experience contradicts yours. Additionally, your weight gain was purely from your thyroid issue…so of course you taking thyroid would clear it up. As I said, I suspect that you have a other underlying issue in that you caused/created a medically recognized disease state (with your diminished TSH)…which is NOT what I was referring to…as I have said that in a healthy body you could not induce a disease state. That said, that you have some other underlying issue is likely evident in that you 1) read this article; and 2) felt some need to comment…had you purely had primary hypothyroidism that was perfectly cured by taking some thyroid hormone your search for answers would have ceased. That you are still searching for answers means that there is still something wrong…which puts you in the pool of the rest of us…and I will say again, it is not near so simple or straight forward as you want to make it out to be. Hopefully we can both agree on that. :)

          • Faith says

            PS…you have to realize that there are TWO distinctly different sources of information in thyroid land. Bonafide medical knowledge and science…which doctors learned in school…and what people on the internet think they know which usually has a little bit of science and a whole lot of hypothesis (granted, it is often smart sounding hypothesis…but is still just hypothesis and not-fact). Most of what doctors know does NOT end up on the internet…nor does it need studies because it is known fact.

            My ever-present advice is don’t get sucked in by intelligent sounding stuff on the internet…check it out. And to check it out by looking at the body’s process and seeing whether it fits…and then look deeper at the process. When you learn the systematic process from the hypothalamus to the liver (of the thyroid process), then much of what is on the internet instantly shows itself as false. Now, I am sorry about all the false information…and it pains me that it misleads people…but all I can do is correct the information to the best of my ability…the rest is on everyone else. Educate yourself, educate yourself, educate yourself. To that end, I can (at this point) have exceedingly detailed conversations about the innate processes regarding thyroid…right down to enzymes and genes…and why supplements, previously thought useful, end up causing more problems than good.

            • Faith says

              PSS…in regards to taking thyroid for the sole purposes of losing weight…and the thyroid atrophy it causes, think of this:

              You can probably ride around in a wheel chair for 56 days and still get up and walk. You are unlikely to walk, due to extreme muscle and tendon atrophy, after a couple of years in the wheelchair.

              Now, I WISH upon wish that people “just tried it” as opposed to the countless reports of peope who have been on high doses of thyroid hormone for years that they did not need. Yes, there are many cases of gland atrophy…doctors know this. Even the practioners who give patients this (because this is what patients want to buy), know this…they know this and do it anyways. Just like how doctors KNOW not-to cut the umbilical cord on babies…and yet do so anyways.

              To get a grasp of just how pervasive bad treatment can be…consider that in tribal africa babies smile on day one, sit at three months of age, and walk at six months of age. Why our babies do not…because of oxygen deprivation brain damage due to premature cutting of the umbilical cord (less than 4 hours). In all the medical books that all doctors studied before passing medical school…no where does it say to cut the cord. In fact, it says to leave it alone. Yet, when doctors do their residency the see the older doctors cutting the cord…and so they do too.

              Best illuminated by the story of the easter ham. Little girl watches her mom cut the end off the ham before putting it in the oven and asks her mother why she did so. The mother replies that she does so because her mother always did. So the little girl asks her grandmother, how says the same thing, because her mother always did so. So she asks her great grandmother who says that she used to because the first house they had had only a very small stove and the whole ham did not fit in the pan…but as soon as they got a bigger stove she never did that anymore.

      • Fern says

        Faith,

        When I said my TSH was nearly zero here, it was when I was 60. By that time (5 years ago), I had never taken a thyroid hormone, so I did not cause my own diseased state that way.

        I have heard it said that the most frequent cause of thyroid diseases in the U.S.A. is autoimmune attacks. As far as I know, the cause of autoimmune attacks has not yet been determined.

        Autoimmune hyperthyroidism is called Graves’ Disease (GD). The immune system creates a TSH-like substance referred to as TSI (Thyroid Stimulating Immunoglobins) which causes FT4 and FT3 production to increase which lowers the TSH. The fact that this happens is outside a person’s conscious control, and that is what happened in my case.

        Autoimmune hypothyroidism is usually called Hashimoto’s Thyroiditis (HT). I have also read that there is another type called Ord’s Disease that is more common in Europe and which is different from HT in that HT may shift to GD and back again whereas Ord’s does not.

        From what my most recent Endocrinologist told me, I have both GD and HT.

        There is a difference between having too much T3 produced by your body, and “taking T3″. I use the L-T3 abbreviation to mean the type of T3 made by the drug companies (Liothyronine), which is the kind a person can “take”. There are other designations to more accurately describe the forms of T3 (Triiodothyronine) found in the body: Total T3 (TT3) is the easiest to measure. Reverse T3 (RT3) has been addressed sufficiently by Chris Kresser with its role in low-T3 syndrome. Free T3 (FT3) is the most biologically active form of the hormone, but it occurs in such extremely small amounts in the human body that measuring it accurately is not considered reliable by most endocrinologists unless it is above the normal range. That is why they rely on the TSH numbers.

        Also, my doctors were also concerned about my liver function and have tested it many times, but the results showed no problem with it.

        • Faith says

          Fern,

          My mistake then (in regards to your low TSH and T3).

          Sorry about your liver. Unfortunately, the usual labs that they do for liver are tests that measure if the liver is dying (i know, weird and stupid, but take up your complaints with the medical industry and not me, the messenger)…what you need are “liver function” tests. No, I don’t know what they are offhand…but that should point you in the direction of where to begin looking.

          For what it’s worth, there ARE things you can take in the L- form (like L-Methionine)…but there are also things you can take in other forms, for example N- forms (like N-Acytel Cysteine)…but not everything is in those kinds of forms. There are also things in S- form (like S-Adenosyl Methionine or SAMe as it is usually called). As well, you have things in number forms too (like 5-Methyltetrahydrofolate).

          Likewise, for what it is worth to the conversation, I found this on the drugs.com site in regards to T3 and weight loss:

          “Warnings
          The use of thyroid hormones in the therapy of obesity, alone or combined with other drugs, is unjustified and has been shown to be ineffective. Neither is their use justified for the treatment of male or female infertility unless this condition is accompanied by hypothyroidism. Thyroid hormones should be used with great caution in a number of circumstances where the integrity of the cardiovascular system, particularly the coronary arteries, is suspect. These include patients with angina pectoris or the elderly, in whom there is a greater likelihood of occult cardiac disease. Therefore, in patients with compromised cardiac function, use thyroid hormones in conjunction with careful cardiac monitoring.”

          As I have said…

          • Fern says

            Faith, regarding the liver function tests, the Mayo Clinic staff made this statement: “Liver function tests are blood tests used to help diagnose and monitor liver disease or damage. The tests measure the levels of certain enzymes and proteins in your blood.

            “Some of these tests measure how well the liver is performing its normal functions of producing protein and clearing bilirubin, a blood waste product. Other liver function tests measure enzymes that liver cells release in response to damage or disease.

            “Conditions other than liver disease or damage can lead to abnormal liver function test results. Test results can be normal in people who have liver disease or damage.”

            For Results, the Mayo Clinic goes on to say, “Normal blood test results for typical liver function tests include:

            ALT. 7 to 55 units per liter (U/L)
            AST. 8 to 48 U/L
            ALP. 45 to 115 U/L
            Albumin. 3.5 to 5.0 grams per deciliter (g/dL)
            Total protein. 6.3 to 7.9 g/dL
            Bilirubin. 0.1 to 1.0 mg/dL
            GGT. 9 to 48 U/L
            LD. 122 to 222 U/L
            PT. 9.5 to 13.8 seconds
            “These results are typical for adult men. Normal results may vary slightly from laboratory to laboratory, and be slightly different for women and children. Results may also be affected by certain foods or medications. Be sure to mention any foods or medications you’ve eaten or taken so that your doctor can correctly interpret your results.

            “The farther from normal the test results are, the more likely you are to have significant liver disease. Your doctor will use these results to help determine any treatment that may be needed. If you already have liver disease, liver function tests can help determine how your disease is progressing and if you’re responding to treatment.”

            The ‘description’ and ‘results’ shown here seem like the tests the endocrinologists and even my current family doctor have run.

            My current family doctor seems very knowledgeable and aware of new medical findings. It was hard to find a good family doctor after my old one retired a couple of years before I was diagnosed with Graves’ Disease, but this one seems to be very good so far, for both my husband and me.

            Thank you for the warning about the use of thyroid hormone for weight loss, etc. As I tried to explain before, I know that already, and I neither practice it nor recommend it to anyone.

            Perhaps I misunderstood you originally, when it seemed like you were saying weight loss doesn’t happen with excess T3 in the body. It does. It happened to me when my Graves’ Disease started taking over. I also have a neighbor who had Graves’ Disease and lost an unhealthy amount of weight before he was diagnosed and treated. I know of other people who have gained weight with excess T3, however.

            I’m just saying it happens, not that losing weight under those conditions is good. All I want is to have normal thyroid levels in the upper part of the range with the TSH in the lower part of the normal range. We are all a little bit different physiologically, and I think that having those normal levels is where I feel the best, and where I am best able to control my own health through diet, exercise, sufficient sleep, and other lifestyle habits.

            The one other thing that interests me is having a DNA test done by 23andme. It is on my Christmas wish list. You had that done, right? So it is where you found out about the low-taurine, right?

            • Faith says

              Fern,

              *Sigh*…Please don’t shoot me for being the bearer of news you did not know, but the standard liver tests they run (that you mention here) are liver damage tests (aka show liver death) and NOT function tests. The function tests are different tests, that they do not normally run (or even normally think to run when people have liver trouble) <–as I say, take that up with the medical community.

              The Wiki has this to say: http://en.wikipedia.org/wiki/Liver_function_tests

              "Liver function tests (LFTs or LFs), are groups of clinical biochemistry laboratory blood assays designed to give information about the state of a patient's liver.[1] The parameters measured include Prothrombin time (PT/INR), aPTT, albumin, bilirubin (direct and indirect) and others. According to some[who?], liver transaminases (AST/ALT (SGOT/SGPT) are not liver function tests but liver damage test—biomarkers of liver injury in a patient with some degree of intact liver function."

              Repeat, they are NOT liver function tests. The liver function tests are different.

              As to the 23andMe test, yes I have…and it has been by far the greatest help…but not in as straight forward a way as one might think. While it really shouldn't surprise me anymore, although it still does, what the so-called "experts" on the genetic things say to do (like methyl-folate) make me sick. My doctor, who is good, has had me try at least 5 of the things the experts reccommend, all to no avail. That is when I gave up on that direction…and instead, looking at the report (free report from Genetic Genie)…I had her test all the things that it says these genes supposedly affect. THAT is where I got my best leads. And that is where I got a much clearer picture of *what* specifically is going on in my body. Likewise, I like to have tests to confirm things (as opposed to the magical thinking that is so prevalent these days).

              What I found is that I am not makig enough taurine (although have high cysteine…that which we make taurine from). I found that I am not making adrenaline very well (although have high dopamine and norepinephrine…that which we make adrenaline from)…which also told me why foods made me sick sometimes. Most tellingly, I found that I have a GABA/Glutamate imbalance…I make too much glutamate (turns muscles on) and not enough GABA (turns muscles off)…which explained a lot! Now I have a treatment plan more personalized to *what* specifically is going on in me.

              The second best part of 23andMe is the "Browse Raw Data" section…from there I found that I have a lot of mutations in the thyroid receptor. It also lets you look up various genes that are mentioned in the various genetic disorders.

              I have done this test for my grown kids as well (who are all also sick with similar symptoms)…and it is fascinating, truly fascinating.

              I wish I could say that this genetic stuff was as easy as they make it seem on the internet…and if the 5 favorite best things to try hadn't made me sick I might have been inclined to stop there…but they did…and that is wraught with the same false information as thyroid groups have. In the end, you are the master and steward of your own body…and the onus is on the individual owner of each body to learn the true biological process the body takes rather than take loosely linked internet advice (ie like iodine for thyroid, oy vey!) as fact…it is not…and it is often wrong.

              So my work continues.

              Yes…you had weight loss BECAUSE you were truly low T3. My comment was that taking T3, when one has normal thyroid function, does NOT lead to weight loss…as was also evidenced here by at least three posters (who had been rx'd by bonafide drs *sadly*). Likewise, I take T3 (have no thyroid), and do NOT have weight loss. Hope that clears up the misunderstanding. :)

              • Fern says

                Thank you. I can hardly wait to get my DNA tested. My husband is also interested, and I’m not sure if other family members are, as well.

                I’m sure the medical community is still a long way from having all the answers, but I feel a little guilty when I disagree with the standard protocol. How did you get your liver function tests done?

                It is that attitude, that in the end we are each in charge of our own health, that has helped me a lot along the way.

                I do believe that I was low T3 for a long time before I was tested, and that the best weight loss I had was before I became fully hyperthyroid with the Graves’ [and again between the times that my thyroid was suppressed by my first endocrinologist and the time I saw the second one (about 3 months)].

                In my case, your supposition works only if you can accept that these same crazy medical doctors are wrong in accepting the TSH levels as the best indicator of thyroid malfunction. I believe that my TSH is always lower than would be expected with my T4 and T3 levels. I believe my T3 was low even when the doctors were saying my TSH was in the normal range for several years. Now I have a doctor who agrees with me that my TSH and T3 levels don’t match, at least; saying that I am “not the textbook case.”

                Your attitude is still a little confusing to me. You seem to think it is a big mistake to take much advice off the internet, but when you do take advice from the internet, you obviously prefer sites like Wikipedia to sites like Mayo Clinic. How do you feel about the clinical health studies that are published in scientific journals?

                Also, why don’t you have a thyroid? Was it surgically removed, or did you have RAI? Why? Cancer? or some other reason?

                The thyroid doctors have all recommended at one time that I have RAI or a total thyroidectomy, but I refused.

                • Faith says

                  Fern,

                  For what it’s worth…I don’t take (to heart) categorically ANY information on the internet. I might look there for a while to get an idea of what direction to go in…but I invariably go back to the books. The trouble is, people like you *warm smile,* who asks me for links. So then I have to go traipsing all over the internet to try to find a.n.y.t.h.i.n.g that comes close to matching what’s in the books. And…well…yes, the wiki does tend to do that more often than not.

                  Also for what it’s worth, I care far more about the actual functional biological pathway of things…and not the opinions attached. For example, I wanted to know exactly how we convert thryoid hormone…with what enzyme/s, where, when, and how…and now, what genes that instruct those enzymes. Beyond that, I categorically disregard any and all hypothesis and opinions others (like the study doers and website writers) have attached to it. So my links, what one’s I give, are merely to show that this is indeed the way the pathway functions. Again, the wiki tends to cover that best as well.

                  Why I don’t like the Mayo Clinic’s website…hmm…have you ever read their stance on thyroid treatment? Like the articles? Yeah, well I did and I am of the attitude…not so much. Here’s a link to a series of articles there: http://www.mayoclinic.com/health/wilsons-syndrome/AN01728 It also might interest you to know that not only did the makers of Synthyroid write the hypothyroid “standard of care” that doctors have to follow or risk losing their license…but that they pay doctors large amounts of money to follow it. In most places doctors have to disclose this information (on my original primary’s clinic’s website, they disclosed that he had been pain $250,000 by Synthroid…not like I stood a chance there).

                  By the by, you and I are probably of the same opinion in regards to TSH. The problem is (and few separate this) there is a vast difference between “primary hypothyroidism” (meaning that in isolation and for no other reason the thyroid is failing to produce thyroid hormone)…and everything else that goes wrong. Doctors have estimated that only aprox 5% of thyroid patients have primary hypothyroidism…and that all the rest have something else. That said, I have to begrudgingly admit that for true primary hypothyroidism (meaning that in isolation and for no other reason that the thyroid is failing)…it is the best and most logical way to approach thyroid treatment. However, for the other 95% of thyroid patients…it doesn’t even come close to helping anyone. Sort of like giving asprin for a broken arm. Likewise, I am an outspoken advocate for pituitary/hypothalamus testing when the numbers don’t match up (like mine).

                  All that said, I can tell you only what I know…and I don’t tend to venture into what I don’t know, other than to point to the direction to those so interested. Sometimes people assume that because I know so much about one thing that I must know about everything else, this is not true. Likewise, I am still on my journey for answers…and have not been able to complete the thyroid/pituitary/hypothalamus journey (or liver journey for that matter), because there are other, more pressing, health issues that take precedence. So no, I don’t know what the liver function tests are (yet)…only the direction to go. Nor do I know the pituitary/hypothalamus testing…only that it seems warranted in a number of cases (including mine). Currently I am trying to wrap my exhausted and confused mind around genetics…from how to read the raw code, to digesting how we make and unmake numerous chemicals…and all the things that might influence our doing that…much less try to put that into something that others could understand and make use of…iy, yi, yi…not an easy thing to do. So I am sorry for the answers that I don’t have. I am further sorry that sometimes certain people have a tendency to get upset when presented with information that doesn’t fit their beliefs…but I think the information is important enough to risk upsetting some…and hope that people will have the maturity to deal with it. Once upon a time people believed that the world was flat too…didn’t make it so.

                  As to researchers…*epic sigh*…while I wish it were not-so…it is so…that research is fallible. Easily fallible even. So here is a simplistic example of studies done to get drugs approved for uses from the FDA: For example let’s say that we want to see if warfarin (a blood thinner) can be used for pain. Now blood thinners have no (or at least I don’t believe that they do) functional connection to pain. However, take 20 people in pain…give 10 a placebo and 10 warfarin. IF more people in the warfarin group experience pain relief…the FDA will allow them to market warfarin for pain…and doctors (without so much as a second thought – most of them) will start rx’ing it for pain. Even though there is no true connection to it helping with pain. Case in point, they are currently giving gabapentin to people with fibromyalgia…gabapentin is Neurontin…one of the stronger psych drugs used to treat bipolar disorder. And yet, the fibro community is 1) convinced it is a pain killer even though it doesn’t work for a large number of them; and 2) upset that they doctors they see think that they are nuts…and make no connection to the fact that they are taking a psych drug as possibly accounting for those dr’s points of view. So why I don’t trust the studies.

                  What I do like about some studies is that they give the functional pathways…which is hugely helpful (for me) in figuring out what direction to go. The largest case in point (that I can think of offhand) is the plethora of Vitamin D studies…ugg…when you know that what they test to find out of people are low is the 25,D (same category as T4)…then you can see that the bulk of tests are misleading if not false on their faces. Never are they testing the 1,25-D (comparable to T3). If it were the same for thyroid studies you’d sigh too. Studies tend to test a hypothesis…if I go out at dawn and sing, will the sun come up? Oh yes, I have done it multiple times on multiple days…and so have others…so it must be true that our singing causes the sun to rise….right? Even on a more practical level…if you rounded up all the hypothyroid patients and ran a study…it wouldn’t tell you much of anything because people are hypothyroid for numerous reasons. Ok…I probably shouldn’t have started on why studies are virtually useless.

                  My daughter is in her 4th year of college…and she has found what she wants to do in life…she could do it now, I suggested that she stay and get the degree…why? Because people (mistakenly) give more credence and credit to those with degrees. She laughed and said she was just studying that…about how people are misled that way. Same is true of studies, imho. Best that one can get out of them is insight into the function of the body…like how exactly the thyroid receptor or vitamin d receptor truly works.

                  Anyways, good luck.

                • Fern says

                  I suppose there are times when we must agree to disagree.

                  I do not give any more credence to what is found in books than to what is found on the internet. The internet has advantages over books because there is no up-to-the-minute information in a book. Also, sometimes the information from books is published on the internet and it is easy to search for the information here.

                  I accept some of the basic things published by the “experts” especially when it fits with my own experience, and in any case, I like to know what opinions traditional medicine hold fast to, even if I don’t agree, so I am prepared for what I experience going to the doctor. I like to learn what is found in recent research studies, and evaluate it for how well the study was done, etc. and how valuable the finding might be.

                  I don’t really care whether or not “Wilson’s syndrome” exists, “a rose by any other name smells as sweet.” The fact that mainstream doctors do not accept it, simply means I need to call it “hypothyroidism” or perhaps “Low T3 syndrome” (if that is actually accepted by most of the medical community)–which I am not actually sure about.

                  Because of what I read on the internet published by the ATA and AACE, which is thoroughly mainstream, I know that they acknowledge secondary (with pituitary involvement) or tertiary (with hypothalamus involvement) hypothyroidism, but consider them to be extremely rare, due to an adenoma which is possibly too small to detect.

                  On the contrary to what you say, “Doctors have estimated that only aprox 5% of thyroid patients have primary hypothyroidism…and that all the rest have something else,” nearly all mainline doctors accept that well over 99% of hypothyroid patients have it in the primary form. Most of those do have the autoimmune cause, but it is still considered “primary.” You are talking about thyroid patients in general, though, so that includes those of us who have been hyperthyroid, that is in the minority, but not so rare as those who they accept as having hypopituitarism aka “central hypothyroidism” and even rarer is a problem with the hypothalamus. (All according to what the traditional doctors, mainly endocrinologists, say.)

                  Personally, I think there is a genetic reason that some of us have both low TSH and low thyroid hormones. Recent research sounded like they were attributing it to an autoimmune attack on the pituitary or on TSH receptors…I am not quite sure what they were saying in the report, and I only read the abstract, not the whole thing. I know that my sister has a similar problem to mine, and it seems like many of our cousins do.

                  I know that many people diagnosed with hypothyroidism do NOT have tests done for autoantibodies, but the whole autoimmune thing is hereditary, and the recommendations from the ATA and the AACE are that the doctor should try to find the cause of either hypo or hyperthyroidism. Anyway, people often have more than one autoimmune disease at the same time. My sister has one that is not related to the thyroid, as did our mother, cousins on her side, and at least one cousin on my father’s side of the family.

                  Wouldn’t it be strange to find that we are related, too?

                  Good luck to you, too.

                • Faith says

                  Fern,

                  Whether or not it is (in err) called, “primary hypothyroidism,” (maybe becaue they do not know what else to put down?)…does not primary hypothyroidism make. The true definition of “primary hypothyroidism” is that for no other reason the thyroid in isolation is failing to produce thyroid hormone. This is simply not the case for most people. This is dx’d by high TSH and low T4 and low T3.

                  Those who have low TSH have either a pituitary/hypothalamic issue or some other chronic disease for which their system has down-regulated itself.

                  Those who have “low T3 syndrome,” and the author mentions in this article…is often due to some other underlying condition.

                  While it is theorhetically possible for someone to have both primary hypothyroidism (a failing thyroid) and thyroid autoimmune…it is unlikely to be the case. Yes, bonafide doctors DO estimate the numbers of thyroid patients with thyroid autoimmune to be aprox 80%…that would mean that only 20% or less could have primary hypothyroidism…but for it to be 20% that would have to mean that there is no other cause of thyroid issues, which is also not the case.

                  The plight of all those not having their antibodies tested…and in the face of all the internet information telling them to take iodine…well that risks people’s injury and even potentially their life. You can argue to the moon and back that the information on the internet is better than books…I will disagree whole heartedly (especially in terms of thyroid).

                  Glad to see that we both share the same opinion on the Mayo clinic…remember, you used to think they knew a thing or two, I disagreed. Yes, their stance on the thyroid leaves a lot to be desired. As I said, at the bottom of the article was a link to the next in their chain of thyroid articles…all equally disappointing.

                  In the end, unfortunately, the onus is on the patient to educate themselves…and live with the consequences of that education. As long as it remains on the internet, people will undoubtedly keep believing that they should take iodine…and as long as people think that this is education, they will undoubtedly *broken heart* keep telling people to take that iodine even if they are autoimmune. And as long as I run across such nonsense, I will add my piece to correct the misinformation that they think they know…because, when you go back to the books (the thyroid pathway never changes by the way) then you can see squarely why taking iodine, esp in the face of autoimmune, is disasterous at best.

                  Studies are hypothesis played out…they still do not change the functional pathway that things happen by. My interests (which I suspect are different than yours), are the functional pathways. Yours appear, to me, to be to find the latest thing they are trying to try it yourself. I am not interested in that…I am interested in the pathway…to find my own idea of what I think will work for myself and try that. Two different approaches, likely based on our individual confort levels, neither right and neither wrong…just the way we each go about things.

                  Good luck to you.

                • Fern says

                  Faith, I really like our little discussions, but it blows my mind away when I find out that we aren’t speaking the same language.

                  I grew up being told “don’t believe everything you see in print,” now, that is transferred to the internet. I don’t necessarily believe either what books say or what is found on the internet. I judge each piece of information for its own merit. You don’t have to put links on for an explanation of what you believe now that I know how you feel about the internet. You can cite the book if you want. I won’t necessarily believe it, but I won’t blame the misinformation on you. ***Kind of kidding–I won’t blame you anyway, really.*** :)

                  The New York Times put forth a definition of primary and secondary hypothyroidism that matches my understanding of it:

                  “Primary hypothyroidism is when the thyroid cannot make the hormones T3 and T4 because of a problem with the gland itself. In the U.S., the most common cause is destruction of the thyroid gland by the immune system. This condition is called Hashimoto’s thyroiditis. Not having enough iodine in the diet is a rare cause of hypothyroidism in the U.S.
                  Other causes of primary hypothyroidism include:
                  Certain drugs such as lithium
                  Radiation exposure to the neck
                  Radioactive iodine used for treatment of hyperthyroidism (overactive thyroid)
                  Special x-ray dyes
                  Surgical removal of part or all of the thyroid gland
                  Some women develop hypothyroidism after pregnancy (often referred to as “postpartum thyroiditis”). In other cases, the cause of hypothyroidism is unknown.
                  Problems with the pituitary gland and hypothalamus may also cause the thyroid gland to produce too little thyroid hormone. This condition is called secondary hypothyroidism.”

                  There is one little tidbit of information I would add: Outside the U.S., particularly in third world countries, lack of iodine is a more common cause of primary hypothyroidism. This is also the way it was in parts of the U.S. before the introduction of iodized salt. I live in Utah, and it was the leading state for goiter prior to the use of iodized salt. That information came from my old World Book Encyclopedia published about 1957.

                  If you don’t know that the thyroid hormones are called “T4″ and “T3″ because that is how many atoms of iodine is attached to each of them respectively, then you are not understanding the functional pathways of the thyroid as well as you probably would like. Are you familiar with the types of deiodinase enzymes and their function? Chris Kresser talked about them in the first article of this series, of course.

                  By the way, I still think of the Mayo clinic the same as I did before. I disagree with some things, but find many things very instructive. That is how I believe about most things whether found on the internet or in books.

                  Also, do you have some particular interest in Wilson’s Syndrome, whether anyone says it exists or not? Wilson’s Disease is something else and is accepted as a rare but real condition, which has now caught my interest….

              • says

                Faith, you’re spreading so much misinformation it’s painful to read. You put down other people for their “misinformed ideas” when you spread same kind of (or worse) misinformation. You’re the exact stereotype of a patient who reads something and then thinks of herself as an expert (so you’re also harming people other than those who may take your advice). You may “know” all kinds of things, but you don’t understand medicine. At all. It’s very sad that some people here are taking your advice seriously! A good example of your total lack of comprehension for basic biochemistry was the explanation of “L-forms, N-forms and number forms”.

                Gabapentin is not a psych drug. It is an anticonvulsant aka antiepileptic. It is sometimes used for all kinds of indications – but it has been shown not to work as a mood stabilizer in bipolar disorder (unlike many anticonvulsants). Most anticonvulsants can be used for pain, especially neuropathic pain. (What is true, is that gabapentin and pregabalin are not very effective for most people with fibromyalgia, even though pregabalin has been officially approved for it.)

  77. Marco says

    First off – there needs to be some clarification here with respect to feedback mechanisms and specifically how it affects thyroid metabolism, as there is some potentially dangerous misinformation being spread on this blog.

    Simply put, the thyroid, adrenals, and gonads are NOT the same when it comes to feedback effects of exogenous hormones. For example, a euthyroid person supplementing with T3 will cause a fall in TSH, secondarily T4, but ALL will return after stopping the T3. The thyroid homeostasis will rapidly return to normal, unlike the HPTA. Therefore, the suppression is TRANSIENT. Bottom line: taking thyroid meds will not trigger HPTA suppression. It is untrue that the thyroid will “atrophy”.
    http://www.ncbi.nlm.nih.gov/pubmed/808728
    http://www.ncbi.nlm.nih.gov/pubmed/807596

    People recover their thyroid hormone relatively quickly (within months, at most) after going off of several YEARS (!) of thyroid replacement therapy. Some people in the studies were on T3 for 30 years and recovered their natural thyroid function within short order.

    Also, T3 has been sown to induce weight loss and is a powerful lipolytic (fat loss) agent that pro bodybuilders use to get as lean as possible before a contest. It stimulates the breakdown of cholesterol and increases the number of LDL receptors, thereby increasing the rate of lipolysis. The only caveat to this is that by T3 increasing metabolism, appetite increases, and weight gain from eating a surplus of calories could result.

    • Faith says

      Not sure who you are responding to, but I will answer for my part (as I NEVER said that thyroid and adrenals are connected…that is pure internet hogwash…and I agree, super dangerous information). That said, two things you are stating ARE downright dangerous…and that is one you will have to lump.

      As I am a proponent of patient education…and more specifically, education on bodily function…so that people can more readily tell the difference between internet hogwash and what may in theory work. I am also a proponent of reasonableness and caution.

      So, first off…dangerous internet information number one. While it is true that MOST vitamins (water soluable ones), if taken in excess or when a body does not need them, will be excreted…it is NOT-true that they are excreted by themselves. People taking high or unneeded doses, for example, of calcium will also excrete magnesium that binds to it. However, one could consider taking water-soluable vitamins realitively safe. Where this has become UNSAFE…is that people think of ALL supplements in the realatively same way. Minerals, for example, quickly become dangerous in excess. Even worse…because they cannot patent hormones…there ARE some hormones being sold over the counter. THESE are not simply excreted. The body is an extremely excellent regulator of itself…while it will excrete excess (ONLY IF THE LIVER AND KIDNEYS ARE FUNCTIONING CORRECTLY…something that NO doctor or practioner that I know of even bothers to look into in those who are hyper-thyroid).

      Yes, while some might restore function…there are many (a great many) of thyroid patients who were not-so lucky.

      So…body function. The hypothalamus sets the body’s level of thyroid need. (If you disagree I will find you a link, however, you might prefer to get a medical textbook). This level will then be maintained no matter what. So, for example, if the thyroid set the thyroid level low (because maybe the person is sick)…then no amount of taking thyroid hormone will raise it. And, you can ask thyroid pateints about this…they take increasing doses all while their levels stay low. Now, I cannot help or control the fact that the medical community is hopelessly behind in understanding this very rudimentary and simple fact. It is (primarily) the liver that will tag excess hormone for excretion…and in so doing…in the face of continual excess hormone…the body will let the hypothalamus and thyroid know to further reduce levels.

      Taking T3 does NOT increase appetite…I know, I am taking it and have been cumulatively for nearly two years. I have zero appetite most days. Nor does T3 result in weight loss…because in order to do you you’d have to be successful at inducing a hyper-thyroid state…which the body will not let you do. It would also be inducing a disease state (extremely dangerous and for which drs should lose their lisence). You can also induce extremely high blood sugar to reduce weight (my cousin lost 50lbs in a weekend)…but again, that would be to induce a disease state…violating the ethic of, First Do No Harm. So…I cannot even believe you are defending this. And, you are wrong. This blog has had a few people who were erroneously given T3 (under the same false belief as yours), felt terrible…and did NOT lose any weight. That, in itself, speaks volumes. And, indeed, I can tell you from experience…too high T3 causes very similar symptoms to too low T3…excessive tiredness, paradoxial weight gain, feeling like one is going to die…literally, not-panic-based…and it is a horrible feeling. Never in a million years would I want anyone to feel like that. And…incase you did not know, hyper-thyroid is so dangerous…and so likely to result in death…that the Disability people consider it something that they automatically approve people for disability for. Why in the world would you want to harm people like that???

      Cholestrol is connected to Vitamin D…and is a hormone…we make it. The liver (I beleive) makes cholestrol…and the fat under one’s skin makes vitamin D (a steroid hormone and immune supressant).

      So bottom line is…IF you think that it is safe to take thyroid hormone while you have a perfectly functioning thyroid…AND…if you further believe that you have found a way to supress the liver and kidneys (and want to do that) so as to be able to successfully induce the disease state of hyper-thyroidism…in order to lose weight, by all means…go for it. That said, never in a million years will you be able to convince me that doing so is safe…or wise. I will continue to advocate against such dangerous practice.

      As to linking the thyroid and adrenals…you will have to take that up with the other posters who think that is true, I do not. Likewise, I think that they border on dangerous practice of having people take hormone that they do not need.

      Indeed, the article above, is asking the very bold and tough question…should one even give T3 in people with low T3 due to chronic illness. While I take T3 (and have a chronic illness), I also have no thyroid, I agree with asking the tough question…and I think he (a doctor), makes a reasonable and cmpelling point. You did read the article didn’t you??? Maybe you should write him about why you feel T3 should be given to everyone???

      Hope that makes my part clear, good luck.

      • Marco says

        Faith –

        My purpose is to clarify for others here and not get into a pointless pissing match on your word and against mine.

        First off, are you a trained medical professional or have some type of medical background which gives any credence to back up your statements? Look, I’ll lay it on the line; I’m no medical professional, but at least I back up my comments with actual research and not just lay opinions. Some of your statements do make sense and are true, whereas others have no bearing on reality other than your own and that of you own observances and anecdotal data. But since seeing some of your posts over the last several months, your approach seems almost dictatorial as if it is gospel and I fear some of the others are taking it as such.

        Furthermore, you completely misinterpreted the issue with respect to weight loss. There are ample studies that show T3 does, in fact, induce lipolysis (fat loss) which I thought I made very clear in my post, otherwise bodybuilders and figure athletes wouldn’t use as as a pre-contest staple to reduce bodyfat down to almost nothing. Fat loss has nothing to do with weight loss, although T3 used in high amounts can be very catabolic to muscle tissue which would then result in weight loss. I agree it should NOT be used as a “weight loss aid” AND I never implied it should be administered to euthyroid (normal thyroid) patients. Those that take it as a fat-loss aid are taking it at their own risk.

        BHRT, and specifically thyroid HRT has a real place in today’s world. It simple cannot always be fixed by tweaking macro and micronutrients, although those can be supportive and assist in treatment. There are a ton of cases to support that argument with respect to thyroid and all hormones (i.e. growth hormone, estrogen, progesterones, testosterone, etc.). Thus, hormone replacement is not the evil you make it out to be.

        Other issue regarding T3 that you again misinterpreted is that I never stated it increased appetite directly. I said it increases metabolism and increased metabolism increases appetite. No rocket science there.

        Finally, without substantiating your opinions with just about everything you blog about with some actual bonafide research amounts to nothing more than blatant rhetoric and idle banter.

        Post up some links to some studies and then we can have an intelligent exchange.

      • Laura says

        Faith, I don’t understand your statement that the body will not let you induce a hyper thyroid state. It is my understanding that one of the goals of testing thyroid levels is to prevent damaging levels such as occur during a thyroid storm. It is because you can overdose that they watch your levels. If there were no danger (because the liver sweeps excess away), it would be so simple – just give a large dose and let the body use what it wants. What am I missing here?

        • Fern says

          Laura, your understanding is pretty much the understanding I was given by each of my 3 endocrinologists.

          Faith, I agree that you should share your sources of information if you have something more to relate about why the liver should sweep away the excess thyroid hormones.

          Are you still with us, Faith?

          • Karen says

            Twice in my life I’ve been hyper thyroid. The first time was a chronic condition before they removed my thyroid. My resting pulse was above 100 (usually around 125), my metabolism was crazy fast, I was irritable, I couldn’t sit down (hyper active) and I lost down below 100 pounds (normal weight is around 120). So, I know what it feels like to be hyper thyroid.

            the second time was just about 4 years ago when I was trying to figure this thyroid stuff out because my current doctor had lowered my dose so low that I could hardly function. So, I ordered Dr. Lowe’s Thyroid Gold supplement. I started out taking 3 capsules, which was WAY, WAY too much for me. 3 days later I was extremely hyper thyroid. Even though it does induce weight loss and I was overweight at the time, the feelings of being hyper thyroid are horrible and I don’t enjoy them. So, I went back on the Synthcrap until I could figure things out.

            You CAN induce hyper thyroid by taking too much. Maybe people who are thyroid resistant cannot, but a normal person can. I have no antibodies and no other illnesses. I did have high RT3, but after getting on a T4/T3 combo drug, I don’t have high RT3 anymore and I’m back to normal. I don’t have a diagnosis from when my thyroid was removed, but it was just after the birth of my son and was likely induced by the pregnancy and not autoimmune.

            Karen

            • Faith says

              Will re-phrase…

              Per Fern: IF your weight gain is due to low thyroid, then increased thyroid would help. However, IF one’s weight gain is NOT due to thyroid (high norepinephrine, low taurine, etc), then taking thyroid will not help in the slightest. There were at least three recent posters here that were complaining of how horrible they felt on T3 that they were given for weight loss and all three reported that it did NOT help them to lose weight. Nor, for that matter, has it helped me lose weight…and I do not have a thyroid and take only T3…and have, at times taken too much. Furthermore, on the Mary Sholmon Yahoo Thyroid Group, many there (some years back now), stated the same…that it wasn’t until calories reached 2,000 that any weight loss was experienced by anyone.

              To Karen, that is very interesting that getting the T4/T3 balanced reduced your RT3…thanks for sharing that. If you are taking a desiccated thyroid, my suspicions are that there is something else in it that you needed…and the lack thereof may be what resulted in the RT3.

              I will continue to disagree that in a body that is working correctly you cannot induce a hyper-thyroid state. In a body that is NOT-working correctly…you could. However, and just a random guess…that you two could not get together and figure out *what* precisely was not-working correctly…so as to know *who* should and should-not be given T3 to help them lose weight. And by that, I mean those who do not have a thyroid issue…and just simply want a weight loss drug (which is what you are avocating for…to which I am opposed)…and I will defer back to the recent previous three posters who had no thyroid issue, were given T3 for weight loss, and who did not recieve the promised weight loss benefits…and became very sick to boot.

              • karen says

                Faith, I don’t believe anyone should be given T3 to loose weight. I also don’t believe that MOST people should be given ONLY T3 at all. I took it for a year and felt like crap the whole time. Know many other people who feel the same way.

                • Faith says

                  Karen,

                  Just goes to show you how everyone is a different (as I only feel ok on T3 only). By the by, this conversation is taking place amid another conversation…a person named Marco (see above) was upset because he/she felt there was some misinformation being spread. Although Marco was connecting (at least) two different bodies of information, I elected to respond to the part which may have come from me. Fern then jumped in on what I was saying (that T3 should not be given for weight loss)…and then you jumped in. Unfortunately, the heart/spirit of the original conversation was then lost. Does Fern agree with Marco that T3 should be given for weight loss only? I doubt it, and I doubt she realizes that this is what she has been defending (despite my trying to point that out). You may appreciate reading the whole conversation to see how it is getting off-point. Also, it goes on own further below your comments.

                  Bottom line is, imho, T3 should NOT be used for weight loss…that is not what it is for and it has many more negative consequences to one’s health. Agree or disagree. Marco says yes they should be…Fern seems to agree with Marco that T3 is a wonderful weight loss pill…Karen does not, nor do I…seems we (lol) have a tie. ;)

                • Fern says

                  Faith,

                  You said: “Fern seems to agree with Marco that T3 is a wonderful weight loss pill” … did you even READ what I really said?

                  I said: “Faith, I think you misunderstood what Marco was saying. I don’t think he was recommending taking T3 in order to lose weight…” I think YOU misunderstood Marco, now you MISUNDERSTAND me. I DO NOT and HAVE NOT AGREED that “T3 is a wonderful weight loss pill” Marco did NOT say that, either!

                  If you can NOT even understand this simple language how can you POSSIBLY understand all the medical “information” that you try to pass along on this site?

                • Fern says

                  Karen, I think you’re right about most people. Most people who have low thyroid function seem to do very well on L-T4.

              • Fern says

                Faith,

                I read the posts of Elizabeth May who said “We started with only cytomel and gradually increased to 10mcg in the am and 10 mcg in the late afternoon. We added in 25 mcg of synthroid in early 2013.” I understood that the reason they gave her thyroid supplements was due to low thyroid levels and didn’t see anything mentioned about being given T3 “for weight loss.”

                Laura said, “…the fact that I had unexpectedly, with no apparent reason, gained 20 pounds” was what led her to see the naturopath, but that is different than being a healthy person seeking to lose weight. It is a symptom of low thyroid to have unexpected weight gain.

                I agree that we shouldn’t accept all the “information” we find on the internet, because some or even most of it might be misinformation. I always consider the source. One of the best sources is the National Center for Biotechnology Information (NCBI) the National Library of Medicine (NLM), at the National Institute of Health (NIH).

                Here is a basic chapter on Thyroid Disease:

                http://www.ncbi.nlm.nih.gov/books/NBK241/

                I actually found it while searching for “thyroid atrophy” since you had mentioned it, Faith. (Thanks.)

                It says, “There is an exception to this, [how TSH usually rises in response to low FT4] however. In autoimmune thyroiditis, blocking antibodies to the TSH receptors on thyroid cells may prevent TSH stimulation and thyroid atrophy may occur even in primary hypothyroidism.” (This is not talking about thyroid atrophy resulting from taking L-T3, but because of the autoimmune response.)

                It also says, “Tests for antithyroglobulin and antimicrosomal antibodies assist in the identification of patients with autoimmune thyroiditis. Antibodies to TSH receptors are now clinically available, both TSH-like thyroid stimulating antibodies (TSI) and thyroid blocking immunoglobulins to diagnose Graves’ disease and atrophic hypothyroidism.”

                I believe this is why one of my endocrinologists said that the antibodies associated with the autoimmune hypothyroidism would “destroy the thyroid.”

                Did I mention that I have both the TSI, and the antibodies that signal Hashimoto’s Thyroiditis? (AI hypothyroidism).

                There is one other thing I think you should realize: I NEVER said I think people should take HIGH doses of L-T3. As far as I know, NO ONE has ever taken LOWER doses of L-T3 as I have. When I started taking L-T3 daily, I started with an eighth of a 5 mcg pill. To get it that small I had to first cut it in quarters then turn the quarter on its side to split it one more time.

                Naturally, if a doctor prescribes it, having found the need for it in testing, then yes. Follow the doctor’s advice or get a second opinion elsewhere.

                • Faith says

                  Fern, I am speaking to conversations outside this one..but either way. YES, that IS what Marco is saying…and what you ARE defending. Which is fine…as it is fine that I disagree. We are unlikely to come to an agreement on this subject…and you are equally unlikely to see my point.

                  My point, to you, being that you had weight gain because of low thyroid (most people have weight gain for numerous other reasons…like high norepinephrine, insulin issues, low taurine, etc…which would NOT respond to thyroid hormone for weight loss). Your situation was corrected because you added what was missing…and because you created a disease state. That in no way means that if you give a perfectly healthy person who doesnt have thyroid issues T3 (and not everything is an L-) that you could or would successfully create a disease state. Furthermore, for all the people in the world who are overweight for reasons other than thyroid (which is most of them), adding thyroid hormone is not only useless, it is dangerous. Now, will you acknowledge that people are overweight for other reasons than thyroid? Will you realize that just because you responded one way that not everyone responds as you do? Will you acknowledge (even to yourself) that you created a disease state? I doubt it.

                  Furthermore, my ire is with the practioners who do NOT test…but merely give every single fatigued patient thyroid hormone…usually dried feeder pig thyroid hormone under the guise that it is “natural.” They do this because this is what people who read the internet seem to want (and are willing to buy)…rather than use their medical knowledge. So we are talking about doctors and naturopaths who do in fact rx it without lab tests.

                • Fern says

                  Faith, what Marco said was, “Faith –… you completely misinterpreted the issue with respect to weight loss. There are ample studies that show T3 does, in fact, induce lipolysis (fat loss) which I thought I made very clear in my post, …although T3 used in high amounts can be very catabolic to muscle tissue which would then result in weight loss. I agree it should NOT be used as a “weight loss aid” AND I never implied it should be administered to euthyroid (normal thyroid) patients. Those that take it as a fat-loss aid are taking it at their own risk.”

                  That is what I agree with: that YOU misunderstand; and that EVEN THOUGH T3 can cause weight loss, it is NOT healthy weight loss if it is due to free T3 being increased above the normal range, nor should it (liothyronine, Cytomel, aka L-T3) be given to euthyroid patients to push their levels over the top of the normal range. I would like to emphasize what Marco said in conclusion: “THOSE THAT TAKE IT AS A FAT-LOSS AID ARE TAKING IT AT THEIR OWN RISK.”

                  Essentially, I thought that was the gist of your own argument and wherein WE DO AGREE. If you don’t agree, then maybe I really don’t understand you either.

                  Faith, you also asked, “Will you acknowledge (even to yourself) that you created a disease state? I doubt it.”

                  NO, I will NOT acknowledge that I created a disease state by taking Liothyronine. It is simply NOT TRUE. I have only been taking L-T3 (please accept that this is shorthand for saying “supplemental T3″)–and, I am saying, I have only been taking L-T3 for three months so far. Also, I have ONLY ever taken LESS THAN 5 mcg in a day. I have NEVER taken as much as 5 mcg in a day, and certainly NEVER more than that. Is that clear?

                  I certainly hope you could understand me this time. If not, I give up.:P

                • Fern says

                  Faith, I forgot to mention that I DO acknowledge there are other reasons for weight loss. My husband lost about 40 pounds of water-weight during his one week stay in the hospital under the care of cardiologists. They used diuretics on him to get rid of the excess fluid he apparently gained while he couldn’t eat due to nausea–and while doctors had no clue that his problem was cardiomyopathy, or congestive heart failure (CHF.)

                  There are certainly other disorders that can cause weight loss, like Cancer.

                  Maybe people can actually lose weight by trying, even here in America where an abundance of food is always at our fingertips…I am being a little facetious here…but that is outside my range of experience.

                  In any case, I don’t think thyroid supplements will necessarily help with weight loss, but that it is necessary for the thyroid to be functioning properly [or proper supplementation if the thyroid has been destroyed] to have healthy weight loss. And it’s important to follow a very healthy diet as well. I don’t think diets are very healthy if they, like the paleo diet, are restricting some very healthy foods. Exercise is also important to healthy weight loss. That is my opinion. If you don’t like it, that’s fine with me.

                • Faith says

                  Fern,

                  It sounds like you are trying to beat me over the head until I agree with you…we don’t agree on some thing…and that is ok…so leave it.

                  And, you DID induce a disease state because you caused your TSH to go low, below range. TSH is the pituitary’s request for thyroid hormone…and it IS what doctors and research studies look at to determine hypo/hyper thyroid state. Your reduction of your TSH DOES (like it or not) show that you affirmatively induced a “hyper-thyroid” state…aka, a disease state. <– THIS is actually what we (or what I) was challenging because my stance is that this would not-have happened in a otherwise healthy body.

                  You can disagree with that all you want, however, that is how doctors and other research professionals will look at it. The studies cited (only one having to do with actual thyroid hormone as opposed to thyroid supressors), looked only at TSH over the 56 days (again, leg muscles are unlikely to atrophy in 56 days).

                • Fern says

                  Faith,

                  I know that TSH is the main thing “doctors and research studies look at to determine hypo/hyper thyroid state,” but there are exceptions such as the one I quoted from the chapter on the thyroid from the medical text.

                  Now, I just want to know where you got the idea that anything I have deliberately done has suppressed my TSH below the normal range? And when did it happen? If I gave you that idea in any of my other comments I would like to know which one. In any case, it didn’t happen due to taking the L-T3, because my TSH test s