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.
Why T3 Levels Are Low
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.
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.
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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.
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.
Articles in this series:
- Low T3 Syndrome I: It’s Not About The Thyroid!
- Low T3 Syndrome II: Myths and Misconceptions
- Low T3 syndrome III: Inflammation Strikes Again
- Low T3 Syndrome IV: An Autoimmune Disease You’ve Never Heard Of?
- Low T3 syndrome V: Should It Be Treated With Thyroid Hormone?
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My 16 year old daughter was tested for iodine deficiency and also thyroid issues. She did the iodine load test and her doctor has put her on 1 iodoral each day. Her body was producing the thyroid hormone but her T3-T4 was low. So he put her on Armor Thyroid medication. She is on 30 per day. She also takes Vitamin D-3 and 200 mcgs of selenium. After reading some of your info and am really concerned that this might be destructive to her overall health. She struggles with her weight, but eats a very clean diet of vegetables, lean meat and low glycemic fruits. She consumes complex carbohydrates like brown rice and gluten free pasta in very small amounts. Her basal temperature was low before she started taking the medication 93.6. Her temperature now is up to 96.7. Please let me know what you think
Sorry i forgot to say i started t3 (tertroxin) at 20mcg then went up to 80 for about three weeks then back down to 20 for about two weeks before stopping.
And the t4 i have been prescribed is eltroxin
Wow, I’ve never heard of a doc prescribing T3 so casually, or even for weight loss…period. Docs in the USA are reluctant to prescribe it for thyroid. 80 mcg is an awful lot to take in a day. Did you take in one dose, two doses, three doses or four doses. I would take at least 60 mcg in 4 doses for a week or two and reduce by 5 or 10 mcg every one or two weeks. Also I would consider a more responsible doctor. In some ways I wish I had a doctor who was so free with T3 but I am sure I would be more cautious. Where in the world are you?
Hi all, thanks for your replies, much appreciated.
My t3 has never been tested unfortunately. Only TSH and t4. My results were normal a year or so ago but are now indicative of hypothyroid according to my doc. And i did not get any tests while taking t3. The shocking part was how quickly i put weight on once i came off t3. Literally 7 kgs in 3 weeks. I didnt even know that was physiologically possible 🙁
I can hardly get up the energy to get out of bed and my usual exercise habits have fallen by the wayside because of this and also because i feel too self-concious to get to the gym now.
So i have been prescribed 50mcg of t4 per day for now. Does t4 also require a long tapering off period if i were to come off it down the track?
Thanks
Hi Helena,
The issue with taking any endocrine hormone, is that the body is extremely self-regulating…which means, whatever you take your body will make less. The danger of this, and of casual rx’ing that some drs do…is that as they raie doses, the gland may stop making any altogether…and the risk is atrophying the gland…or gland death.
It sounds like you are very hypo-thyroid…and yes, the weight gain can be phenominal. Yes, will be the same trouble (or even more so) with the T4.
TSH is the pituitary request for thyroid hormone. T4 is the storage form of the thyroid hormone and has a much longer life in the body. T3 is the only active usable hormone but does not live long in the body. The liver is the primary converter of T4 into T3. It is very likely that the pituitary will tag the T4 you are taking and lower accordingly…meaning, slows down its request for the thyroid to make any. When TSH gets high…meaning is asking for a lot…drs assume you need more, but it can also mean that your pituitary is having issues.
People who have multiple endo issues (ie adrenals etc) more likely have a pituitary issue or hypothalamus issue than a thyroid or adrenal issue.
To get a clear picture of what is going on you need a full thyroid panel…however, this condensed one will help as well…TSH, FT4, FT3, and RT3. You may also want to run the dual D test of 1,25-D and 25-D. D is also an endo hormone and like thyroid, they tend to only want to test the non-active storage form (it is a wonder that they can help anyone at all).
For what it’s worth, my T3 needs fluctuate (I no longer have a thyroid)…when I take too much, I gain weight (despite being hyper-thyroid)…when I take too little, I get depressed. Rumor used to have it that Jullian Michaels (Biggest Loser) was on synthroid…if so, she is the only person I have heard doing well on thyroid hormones. The lesson I took from all that I went through…is that man has yet to immitate nature.
What is likely happening is that your thyroid is making less to compensate for what you were taking…I am unsure how to help one’s thyroid to function again…other than careful slow tapering to allow it to catch up.
Again, so sorry that you are going through all this…something my dr often says, the body is really very ressilaent…hang in there.
Hello
I was wondering if you have any idea about the expected time it takes for the thyroid gland to return to normal functioning after coming off liothyronine. I have gained a large amount of weight in the short month or so that has passed since i stopped taking t3. My thyroid was normal before, i took t3 for weight loss under the false impression that the rebound effects would be minimal. Iam extremely worried that i have damaged my thyroid permanently. Any info would be appreciated.
Many thanks
I don’t have any answers for you, just more questions. How long and how much T3 were you on?
Karen
I’ve never heard that you could come off T3 with minimal effects. At the very least you have to wean yourself off…SLOWLY. Have you considered the possibility that you did/do have a thyroid problem? Did you ever have your Free T3 tested?
🙁 Helena, I am so sorry that you are going through this.
Ok…so some things to think about. You mentioned your thyroid levels were normal before taking the T3…any chance you had them tested while on the T3 as well? <—This would tell you the most about what you are facing. IF your thyroid levels remained normal on the T3, then this is a pretty clear indication that your thyroid system is working well. However, if your T3 levels were high while you were taking it…then there is more cause for concern. <– This would indicate that your thyroid system is not responding well.
The sad truth about thyroid is that too much thyroid can also make you gain weight…and feel tired and fatigued as one would if low.
If your levels stayed normal on the T3, this means that your thyroid system started making less to compensate for what you were taking. If this is the case…you will want to wean off the T3 to give your thyroid the chance to make more.
If your levels were high on the T3, my guess is (and this is not medical advice), that you will feel much better stopping it. That said, you will probably want to check your thyroid levels every now and then through the years.
The concern with taking endo hormones (of any kind) is taking so much that the gland stops producing any…and if stays like that a while, then the gland can atrophy. It doesn't sound like you are there.
Hang in there.
I have Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia I have all the symptoms of Low thyroid. When I try to take thyroid meds: I have tried all of these treatments: ( Cytomel, Synthroid, Compounded T3 SR, Armour Thyroid and the first two together) At first I seem to feel better, have more energy and I just have a better outlook on life and can cope with things better but after awhile it seems to increase my low thyroid symptoms plus add some new symptoms. I have the same reaction when taking progesterone.
I have had severe breakouts like boils on my chin, armpits and groin area. One on my chin in which I had to have lanced it became so severe and had to have IV antibiotics. I also start having small, painful nodules which started in my abdomen, but now are in my arms and legs when I take the thyroid meds. I start itching in my ears and the right upper shoulder blade and have headaches.
Anyone out there experience any of this and have any answers? I am desperate as I really feel I need the thyroid meds. My bloodwork shows I do, but just can’t seem to tolerate it when I try it.
Thanks,
Desperately Seeking Help
Make sure your Iron, B-12 and D levels are optimized before trying the medication. I have parasites that cause itching and they can interfere with thyroid so have those checked as well.
I have been struggling with health issues for a significant amount of time. I am given a diagnosis and then my physician says no, I do not have it after I test positive for it. The disease is Sjogren’s Syndrome. Which the blood work came back with a high ANA in a Sjogrens Pattern. I am also being diagnosed with nodules in the lungs, they seem to disappear and then I have new nodules that replace them. I have been watched with CT scans for about 5 years. Also, new nodules in the liver, and kidneys. This concerns me as I have heard that T-4 converts to T-3 in these organs.
My T-3 had tanked about 8 months ago, at first the GP did nothing. I was then told by Rheum. my problem is metabolic. I went to see an endo. I was given T-3 and the first day I felt wonderful. Probably for two weeks I felt great. But had some GI issues with the T-3. I have noticed slight palpitations while on T-3 and my great feeling of increased energy, and increased appetite has stopped again. I was having severe weakness, with shortness of breath and just feeling as though something was seriously wrong. I am concerned about the amount of nodules showing up in my organs and I am greeted with a blank stare and I never receive information as to what this can be. I am thinking cancer and or Sarcoidosis. I am seriously sick and tired of the medical profession and blank stares. I keep working toward getting my life back and there is always a setback. I thought the T-3 was the magic bullet. It was for a short while and now noticing some weakness and shortness of breath again. I moved from a large metropolis to a small mountain community which has really thrown a monkey wrench into everything.
My mother had a pituitary tumor and her kidney failed without warning. Or they just weren’t paying attention. Is there any hope in ever finding out what is really wrong with me? Whatever it is, it has affected every organ system, from the eyes, to the skin, hair, nails, kidneys, lungs, liver. I have low D-3 which will not respond to supplements. Yada, Yada, Yada, My values are TSH: 20.29; Free T-3: 1.7 Pg/ml; Free T-4: 1.32 ng/dl. The prior test of the Free T-4 was slightly high. Any thoughts? Or is it wait and see?
I am a 37 yr old female with a lot of symptoms that is very confusing to me. My symptoms are; fatigue, thinning hair, excess hair, thinning skin, lack of muscle tone/muscle loss, irregular menstrual cycle, Pms, dizziness, nausea, depression, excess urination especially at night, brain fog, difficulty concentrating, don’t feel awake till 11am – and probably more I can’t remember. I went to a holistic DO because my gyn said all my tests were normal. The holistic dr. sent me for labwork and I have (FREE T3 = 2.4 pg/ml , Thyroglobulin Ab =24 iu/mg, FREE THYROXINE = 1.28 ng/nl, TSH = 1.65 uiu/ml, HIGH SENSITIVITY CRP 7.7 mg/L , and saliva Cortisol tests shows low Cortisol until late evening where it levels out.) My tests seem to indicate as these articles Low free T3. The holistic Dr. prescribed me 30mg of Armour thyroid and I got so sick off this, chest pain/anxiety that I never experienced, increased dizziness, increased fatigue. She said it was a low dose so try it every other day, the symptoms decreased but not completely, I called the pharmacist and then stopped the medication. This DO is now telling me to go back on it. My father was diabetic type II but my glucose tested low, I have hypoglycemic tendencies. Before changing my diet I would eat an omelet with salad and get dizzy and weak after. I don’t think my symptoms are being caused by my thyroid, I think as this article suggests that my symptoms are a result of something else. I am trying to find out what that something else is. Hypoglycemia is a pre-diabetic condition, could that cause this? I have high inflammation, I am overweight. I have lost 30 lbs. but I urinate 3-5x a night so I am also fatigued from sleep interruption. My daily life is greatly affected. In the past when I told Dr.’s I was fatigued they put me on antidepressents, when other symptoms appeared they said lose weight. I am so disappointed in the medical profession. I am also disappointed in this holistic dr. who is telling me to go back on Armour after I told her it made me sick. I am going to and endocrinologist next Thursday but I fear I won’t get answers from them either. This article is also complex and I don’t know any Dr’s that might even be able to help me with this b/c the article says Dr.’s don’t understand FREE T3 syndrome. If anyone knows Dr.’s in Pennsylvania that would help with this please post back. Thanks,
Hi Irene,
I am so sorry that you are going through all this…and some of your symptoms sound very much like my own.
Re the Armour thyroid…not sure where natural drs got the idea that dried out pig thyroids were natural or good for people…Armour Thyroid is made by Armour Meats (you know, Armour Hotdogs). The law requires slaughter animals to be killed before their 2nd birthday…however, the industry slaughters all just before 1.5 years due to that they feed these animals so much endo hormones to grow them bigger, faster, fatter…that they would die from hormone overdose at around 1.5 years. As well, anyone who have thyroid autoimmune…their immune system will outright attack the thryoid cells in the dessicated thyroid…as it made you very sick is suggestive of this and is wrong (in my humble opinion) for your practioner to tell you to stay on it. In addition, Armour tends to change fillers and have been known to use fillers that supress thyroid action.
If you have low FT3…then two tests you may want to have run are the “Reverse T3” or RT3 as well as the dual D tests…25-D (which they normally run) and the 1,25-D (the more important one). If either or both the RT3 and 1,25-D are high this is indicative of an underlying bacterial infection. It will also lead to the situation where your thyroid levels look normal…but are unable to get into the cells to help.
There is a better thyroid hormone (that I would hope natural drs would rx instead) is called Tirosint…it is a T4 only and have no fillers…however, you may need to get special permission to get insurance to cover it.
As to whether or not it is an endocrine issue exclusively or not…anytime the body is going through illness of any nature, the endocrine system tends to respond. And it does seem like your endocrine system is responding.
I also have felt very poorly after eating…and have had no answers for why that is.
My suggestion would be to look for integrative drs in your area…they combine things like nutrition and supplements as well as conventional medicine…and they are the most likely to consider the low FT3 and /or high RT3 and 1,25-D as issues than endos or general practioners do.
OMG this is exactly what I went through! I was heavy and lost a lot of weight intentionally and never felt well after, constant hypoglycemia, peeing like a race horse, fatigue, everything like you. what has cured me after being sick for 2 years? PROGESTERONE. not the creams, they didn’t work. Oral Prometrium. I was diagnosed with Estrogen dominance (lack of Progesterone) I tried for almost a year on topical creams they did nothing. not even the prescription bio identicals. within a few days of taking 200 mgs oral Prometrium I started feeling better. now I have to take a small amount of estrogen as I am Menopausal, and I am finding balance. I actually had to stop working I was so cold and exhausted and weak. I do have to take a small amount of NDT (Thyroid by Erfa in Canada) but I’ve been able to cut back already and it looks like I wont have to continue with it much longer. have your hormone levels checked.
Hi Anita, re estrogen dominance, just wanted to add a bit…sometimes there can be an enzyme in the GI tract that will take the estrogen that was marked for excretion and and re-put it back in the blood stream. Not sure where I found that bit, but I believe in searching re the liver’s role in thyroid conversion.
Irene, Progesterone is the hormone that helps balance blood sugar levels. I bet dollars to donuts you are very low in this hormone.
Your thyroid lab figures don’t seem particularly low to me unless the lab has different ranges than I am used to.
One thing I think is that brain fog, in particular, is a secondary symptom, perhaps not directly low-thyroid, only in that being low thyroid causes appetite loss and appetite loss causes insufficient or infrequent eating, or even insufficient fluid intake, either of which could cause the brain fog. If you have nausea I am sure that could do the same thing.
Nausea was a major symptom my husband was battling before he was diagnosed with CHF. Do you have any shortness of breath or difficulties taking deep breaths? You may want to check out, and hopefully rule out heart failure as a cause of your symptoms. My husband was diagnosed as hypothyroid before he was diagnosed with the heart failure, and I believe it is partly due to being on L-T4 that he is doing so well with his heart now.
I have been diagnosis with just about every thyroid disease that has a name. Different Dr different treatment, times in my life hypothyroid was “in” and other times it was “out” of favor. There was a time that I was told your depressed, a time when it was hormonal, sleep apnea, narcolepsy, it goes on and on. I am 54 now. First time I was treated for hypothyroid was when I was 11. I am still overwhelmingly fatigue. I remember when I was 11/12 having nightmares about running in slow motion. That is what my life was like. I was always smart, got my college degree, got the right job and excelled in my career, although the whole time I was extremely fatigue. The ppl who commented about biking and running, I never had that kind of energy. The days I worked out at the gym I came home and went to bed immediately and usually was late for work the next day. After having a child at 34, I hit a all consuming fatigue, I never fully recovered. I quit my job and became a achy, fatigue mom and wife. I had to push myself constantly to do the things I did. Now at 54 I do not have the pain I use to have, I still am fatigue. I found the biggest relief is the use of progesterone.I have used it off and on for 20 yrs. It helps a lot with the muscle pain and sleep. I still search for answers to my fatigue. I currently am re-visiting the use of thyroid and iodine.
Hi, I recently got bloodwork and seems I have low T3, normal T4, and high TSH. probably started a long time ago but just now being addressed. Dr gave me Synthroid. 2nd day started to feel better but got nose bleeds 4 days in a row. stopped taking the 6th day. Nose bleeds stopped. Then was given Naturthroid. 3rd day in, major nosebleed. Stopped of course. told its not a side effect. both of those meds caused me to feel dry. even in my nasal cavity. What to do? So now I’m researching. Anyone hear of this happening. I’m afraid of what to do next.
Thanks
Wow Joanne, that is an interesting (and perplexing) response to thyroid hormones. 🙁
Not sure if you still have your thyroid (I do not)…and it seems wonderful that your dr is trying to treat the low T3 (they usually do not it TSH and T4 are fine). That said, it is a bit perplexing to me that the drs solution was to treat by giving you more T4…but it is the standard of care so I guess it makes sense given the context of the way they do things…even though it makes no sense on a practical level.
T3 is the active hormone and the one you need…and it would seem that you are not converting enough T4 into usable T3…and the body generally has a reason for this. Malnurishment can cause this, but so too can an underlying illness cause this. The liver is the main place that T4 is converted to T3…or RT3. The body will make increasing amounts of RT3 when there is an underlying health issue. The RT3 is not usable and will dock in receptors so as to prevent T3 from docking. Even people with adequate T3 levels can make too much RT3 and remain hypothyroid despite adequate levels in the blood.
You may want to consider getting your RT3 levels tested (be forewarned drs do not like running it…thanks to the current unfortunate standard of care). And, you also may want to consider having the dual D testing done. They normally only run the 25-D test (this is roughly like thyroid’s T4, the storage form of D)…but the more important one is the 1,25-D test (also one that they do not like to run)…the 1,25-D test is like thyroid’s T3…the active D. Too high 1,25-D can also dock in the thyroid receptors.
Drs hate to give people T3…but you may want to consider asking for that. After all, what you are low in is T3. And at least to me, that seems the logical place to start.
Re the nose bleeds…have no idea…but did get the same thing from an herb used to treat Lyme disease. The dry feeling may be a nutrient def…although I cannot seem to recall wich one…and my sinuses are super dry far in. You may get relief from the saline used in netti pots…they sell some with saline packets that when flushed with that feel great relief from the dryness.
Hope you can find something that helps.
I have had hypothyroidism for 12 years. During this time I was treated with only T4 meds. I felt better, but was never at optimal health. My T3 levels would always show in the bottom of the normal range. I started on T3 meds with a lowered dose of the T4 meds four months ago. I am a different person! I have not felt this good in 12 years! My hair is thickening for the first time since my 20s. It has made a difference in my life! I recommend the book: Recovering with T3 by Paul Robinson.
Dear Denise,
I hope that you are doing fine on the T4+T3 meds. How is your hair now? My hair has been thinning since my early 20s and after 13 years it is so thin that I am considering supplemental hair/wig. In 2007 I was diagnosed with Hashimoto’s because of TSH of 3.5 and high antibodies. My endo started me on the lowest dose T4 medication but after 2 years I stopped it because it did nothing for my hair and other symptoms. I have not been on any thyroid medication for the last 5 years but since 1.5 year I’ve followed gluten, dairy and egg free diet. This year my anti-TPO antibodies are normal for the first time and TSH is 2.3 without medication so my endo says I’m in an euthyroid state. However, my FT4 is low normal and FT3 is just below the normal range. I looked up the blood tests from the period when I was taking Euthyrox 25 micrograms/day and I see that although TSH decreased and became normal and FT4 increased substantially, FT3 remained borderline low. Since my endo would not prescribe any treatment I am considering visiting a private physician who can prescribe Armor. or some type of FT3 supplementation. I am afraid of the side effects because I cannot tolerate more hair loss. I am desperate that after 13 years of hairloss it will never thicken up but your post gave me so much hope. Please let me know if you are still benefitting from this treatment.
I have been fighting fatigue and inflmation along with weight gain since I had my daughter in 2000. My THS levels in tests show “normal”, but my endocrinologist has been digging with lots of tests for almost 3 years trying to get to the bottom. Armorthyroid gave me Graves Disease type symptoms, and just T4 alone was not effective. A few months ago, we tried adding T3. I felt great for about two-three weeks and then-BOOM! Right back to where I started.
Issues include: IBS (gluten and dairy casin as main triggers), achey fatigue and stiff popping joints, fogginess, high blood pressure with edema, asthma, B12 anemia, allergies, low sleep oxygen levels, and female hormonal problems.
My latest blood test results show that I have very high blocking T3 and almost no free T3. My cortisol levels are at .1 – one of the lowest my enocrinologist has ever seen. I also have experienced low levels of C and D when he tests for vitimain deficiency.
My cycle is so heavy that my OB is considering DNC or even up to hystorectomy, my pulmologist has tested me for sleep apnea and found that it wasn’t happening (hence, he did find low oxygen levels – 75% – and can’t figure out why. The ABG test he ordered was normal).
My naturalpath seems to think it is all food related. Every time I go on a diet I lose weight for a couple of weeks and then STOP. Any any food intake over about 1500 – 1600 calories results in weight gain. That should sound normal, except that I weight 260 and should have to eat 2300-2400 just to maintain that weight.
All of of these great doctors mean well, but I can’t help thinking there is some underlying problem that ties it all together. I have been reading up on tyroid diseases and treatments and discovered the Stop the Tyroid madness site as well. I get conflicting info. I would appreicate any input you might have and would be willing to share my test results with you if you think it might help somebody. Goodness knows, I have a lot of them.
Thanks.
Oh Jay, your story just breaks my heart. There is a better book on thyroid issues called, Why Do I Still Have Thyroid Symptoms by Dr. Datis K. He goes into the autoimmune issue as well…which is what you would experience if taking dessicated thyroid like Armor or Nature Thyroid.
It sounds like you need to treat your low adrenals. Also, the true connection between adrenals and thyroid is in either the pituitary or hypothalamus…and you need an endocrinologist to run those tests (reg drs cannot run them for whatever reason).
You did not mention if you had your RT3 levels run. That is important in a case like yours…we make too much RT3 (which will block the receptors if too high) in response to some other underlying chronic illness.
Also the D test…which is also an endocrine hormone…the 25-D test is similar to a T4 test in that it is the storage form. To truly assess your D levels you also need to test the active form of D which is the 1,25-D test. In response to an underlying chronic bacterial infection the body massively converts the non-active 25-D (the thing they test) into active 1,25-D (the thing they don’t test unless you insist) and then too much active D will dock in the thyroid receptors as well and display the T3 in them…leaving you very hypo thyroid even with plenty in your blood stream. They call this a Vitamin D Revesal Pattern.
One underlying issue could be late stage Lyme Disease…esp if you have the Vit D Reversal pattern…unfortuately the screening test they run for it is woefully inaccurate (only 35% chance of catching a known positive). There is a better test run through Igenex. Not saying it is that, just saying that could be below it. It could also be viral, parasitic, or fungal in nature as well.
There is also a new-er thyroid called Tirosint…it is a T4 with NO fillers. However, an underlying condition will cause more RT3 to be produced.
So my reccomend is to get the RT3 levels checked and the Dual D tests of both the 25-D and 1,25-D to see if you cannot find out what may be behind your issues. The dual D would be indicative of bacterial in origin…and thus the likelihood of possible Lyme.
I would like to second the things Faith said. I would also concur that you still don’t know the underlying core problem. It took me almost a decade of suffering to find mine.
I would only add that the vitamin D reversal pattern involves any type of macrophage Th1 inflammation and is not limited to bacterial. A classic example are certain autoimmune diseases.
I would strongly urge some reverse T3 results, and also C3a and C4a markers. Not to mention ANA and other related markers. Get a doctor that goes in with the mind set that your immune system is out of whack and either there is an infection, an autoimmune disease, or both. And get some information.
A good LLMD can make a reasonable Lyme’s diagnosis and will use clinical not just lab results. But then again Lyme’s is tricky to treat. I had one doctor who thought I had Lyme’s, put me on the protocol and all it got me was abx destruction of my esophagus and stomach. Turns out the result was a false positive. When I went to an actual LLMD who was tops in my area, he said he did not have Lyme’s and to be honest he must be right or being on the high glucocorticoids for my autoimmune disease I would be toast.
Also my advice is stay away from the Marshall Protocol. That may work well for sarcoidosis but that is about it. Otherwise you can risk severe problems. The MP people come off almost like a cult and that really bothers me as a scientist since they willfully ignore any research that conflicts with their theory. They also base most of their arguments on in silico simulation on the computer which I guarantee are problematic (that is the area of specialization I spent the last 13 years on).
Best of luck to you and God Bless!
Thanks for that extra information, David. Do you know if it is possible to be tested to see which of the Th1 or Th2 variant of autoimmune disease one has? I’ve got subclinical autoimmune thyroiditis (Hashimotos). Since I read about the possibility of a Vitamin D reversal pattern, I’ve put my weekly 50,000 i.u. dose on hold.
Th1 and Th2 are different components of the immune system not categories of autoimmune disease. Autoimmune testing needs to be done by a specialist. Try to see if you start off by seeing an rheumatoid arthritis doctor or an endocrinologist and see if you can have some of the basic biomarkers I mentioned done. As well as basic hormonal workup. If some of the biomarkers light up then maybe you can get referred to an immunologist. Then they can pursue actual diagnosis. My autoimmune disease is so rare I had to go a very roundabout route to get the right tests.
I think 50000 IU is never a good idea since 70% or more of the immune system is in the gut. That being said though ingested vitamin D3 is a problem for me, my body loves the sunlight. Other ways may be a sublingual vitamin D. But you have to get both the 25OH and 1,25 tests and work with a doctor.
Thanks for that, David. My understanding was that there can be a dominance of either Th1 or Th2 in autoimmune disease and that the dominance can be attenuated or potentiated by certain items e.g. green tea for one dominance and say, echinacea for the other. Must have a chat about the biomarkers with my boss who’s a immunology laboratory scientist. I was assuming I would be one of the 8% of Hashi’s who don’t have other forms of autoimmune diseases as I’m pretty asymptomatic. Just trying to stay that way…I’d love to know why 50,000 i.u. of Vit D is never a good idea since 70% or more of the immune system is in the gut. But I don’t want to pester with too many questions…At 43 degrees south, we don’t get a lot of sun after March till September. I got it up a whopping 7 nmol/L after 9 days hiking this summer.
Sure you are right. Though most of the common autoimmune diseases are believed to be mediated by Th1 type cytokines. But I was using the term Th1 do not which component of the immune system. I think though the issues of dominance are actually very complex and while certain studies involving supplements may be suggestive of how they affect the cytokine subclasses and their expression, again I think the whole issues is much more complicated.
50000 IU is given as D3. In that form the immune system in the gut looks at it as inflammatory and if bad enough response can alter NE profiles as well. Maybe vitamin D3 sublinguals are an option?
Cheers for your reply, David. We are only allowed to buy Vit D here in 1000 i.u. dosages so it will be pretty expensive compared with the big government subsidised dose. Maybe I could cheat and break up the tablet! Or buy the right kind of sunlamp…
The little known thing about Vit D is that it is in actuality an endocrine hormone and not a true vitamin…and like most endocrine hormones western medicine is rather stupid in how they test for it. The usual test for D is the 25-D test…and this is the NON-active, storeage form of D (sort of like T4 for thyroid)…when a person has an autoimmune issue which is also likely caused by some sort of bacterial/viral/fungal/etc infection…there is an interesting issue re Vit D…when a bacteria is present, the body makes a chemical that over-converts non-active D to its active form the 1,25-D (comparable to T3 re thyroid). Since drs only test 25-D…and 25-D “looks” low…they suggest supplementing it…but this is like if one is low T4 but extremely high T3, supplementing T4…it is silly and doesn’y make sense. Normal people do not tend to have true low D…and so it warrants, I believe, getting a dual D test to ensure you are truly low before supplementing…and that means testing both the 1,25-D and 25-D…to see if you are one who has the Vit D Reversal Pattern. And why this is important is because D is a steriod and an immune suppressant.
Dr. Kresser – Do you accept phone consults? I am in New York. Thanks you.
Mare – have you tried this combination of herbs? It is a very strong anti-bacterial, anti-microbial and anti-parasitic.
You take for 3 months (6 days a week for 3 weeks, then one week off for 3 months). It never made me feel badly at all. It will also treat other bacterial problems throughout your body, not just in the gut.
http://www.vites.com/index.php?main_page=product_info&cPath=99&products_id=672&zenid=qirc89h1cfckq8c9vegc030hn4
Berberine is another strong anti-bacterial that has taken hold in the diabetes II community as it also helps one process glucose better and lowers fat/raises muscle tissue. Needs to be taken in 3 doses of approx 400mg throughout the day. And, may not be the best one for digestive issues. You’d just have to try it to see.
I also take Cats Claw on a daily basis and have for a very long time (couple years). It also has anti-microbial properties. In addition, Turmeric, but it is difficult to absorb, so you need to take a lot and the suggestion is taking it with black pepper to help the absorption.
I would think that all of these things might be a long term alternative to the MP, but of course, there is no science regarding this. I have tried all of these things and they have improved my overall health. I don’t have any diagnostics to indicate that I had high bacterial overload in my body (don’t have any diagnostics to the negative either, just never tested inflammation or D levels). I had some localized joint pain in thumbs and hips), general body stiffness and tendon/ligament pain in addition to some localized (in thumb and one finger) arthritis. Whatever I’ve done over the past 4 years has stopped it’s progression and alleviated the pain. I had leaky gut for a year about 3 years ago. It became MUCH worse and more frequent when I was on T3 only. It subsided completely about a year ago and my digestion is good.
Wish you good health.
Karen
Great idea…however, if you have things like Lyme disease, they could make you “herx”…which is a fancy way of saying feel much, much worse. It is a recation caused by the die-off of bacteria.
Hippocrates said that all diseases start in the gut and I believe him ’cause I believe that’s what started it all for me back in the 80s:-( If a body unknowingly has ‘Leaky Gut Syndrome’, a widely recognized problem in the alternative medical community but one that is largely dismissed as being non-existent in the minds of most conventional docs, this health problem can lead to a myriad of chronic health problems, only one of which includes hormone dysregulation. Antibiotics, NSAIDS and antacids all of which are contributors to the problem along with gluten, dairy, soy, etc etc. are things most of western society takes for granted and so play a major part in most everyone’s life in modern day. Dr Robynne K. Chutkan, MD, FASGE, Assistant Professor of Medicine, Georgetown University Hospital and Founder and Medical Director, Digestive Center for Women is an integrative gastroenterologist who believes from what she’s seen in her practice that leaky gut is at the heart of many people’s chronic health problems. Chris Kresser, the creator of this group has written on the subject in this article from 2010… http://chriskresser.com/the-thyroid-gut-connection. If a person hasn’t healed the leaky gut first, thyroid problems will continue as the assault on the immune system continues, just as it has for me as I’ve not been able to find/afford a doc to help me with this so am trying to do it all on my own. While I’ve made some progress with dietary changes as much as I can afford plus L-Glutamine, I’ve a long way to go yet but what can one expect when the problem is many years old so can’t expect a reversal of the problem overnight.
There is a new test out (or maybe is old test but drs are newly using it more readily) more specific to gluten. The issue is a connection to gluten looking similar to thyroid and the body making the mistake to attack thyroid. While this is certainly a strong hypothesis, there are a number of other, equally compelling, hypothesies about whay autoimmune develops. Of course, leaky gut will contribute to many other health problems that will contrinute to your body (hypothalamus) down-regulating your system…thyroid included. When the other issues are resolved, as Chris says, the thyroid should resolve itself.
I want to refer to faith theory that body is down regulating system, by attacking thyroid, this from logical standpoint doesnt make sense to me. First if thyroid is mistakenly attacked by autoimune disease then how can this be lead from hypotalamus, when tsh is going up?? Hypothalamus is making efforts but not succiding. My theory and my illness came from very bad lifestyle, malnutrition, i was anorexic for 4 years from my 15 to 20s and when i started eating, it was just not getting back as it should have, i think its the methylation that is root cause of problems, also numbers add up, 12% of population has this deffective mthfr gene, and that is autoimune hashimoto also 12%, if you get into state when body can not absorb minerals anymore, your immune system weakens that much , that slight gut infection over the years produces autoimune response, and you become sensitive to gluten and your thyroid gets destroyd, less t4 less methylation and it goes the round! This is my theroy based on a little bit of reading and mostly my own experience! So the logic is hypothalamus is not the driver, its the illness chronic that is preventing body from functioning, its the immune system that is weakened!
T-4 ….Synthroid…..didn’t help my hypothyroid symptoms. After my internist began me on a trial dose of T-3 my total cholesterol went down from 323 to 266 after only 3 months. 3 years of Synthroid hadn’t been able to hardly budge my numbers. Fatigue, constipation, and body temperature are definitely improved. I am anxious to see my 6 months number on my cholesterol !
Opps *testing pituitary or “hypothalamic” function.
What about those who are obese or have a chronic illness (have low t3 syndrome) AND full blown hypothyroidism? I’ve been on T4 only medication for 6 years and if anything, it’s made my symptoms worse. I started to take less and I started felt a bit better. Then after a blood test, my TSH was over 12 and my free T4 was well below range… My doctor called me and told me to “quit plying with my thyroid medication”. I’m due for a uterine ablation so I feel compelled to follow his orders otherwise I don’t qualify for the surgery but is this not suppressing what little ability my thyroid has to make direct t3?. Due to Menorrhagia, My ferritin was at 6 ug/L(range: 13-150), HGB, MCV, MCH, MCHC was low, even my potassium was low; I don’t think my ability to make and absorb t3 is currently very good. Do you think taking some t3 would be better? Also, I read that a ferritin level may need to between 90-110 is best for optimal thyroid function, do you agree? (I read this here: International journal of pharmaceutical compounding Vol. 12 No. 6, page 493). All my life, the highest I was ever able to get it (with iron supplements) is just under 30.
I really enjoy these posts, thank you so much for looking at this issue!
Sylvie, for what it is worth…when I was on too high thyroid dose (lab results showed too high) my main symptoms were excessive sleep and weight gain and I feel extremely hypo (just so you know that is possible)….and I will tell you, I also feel a lot better when I don’t take my thyroid hormone (and I have no thyroid). My guess is that there is something (a filler) causing an issue. Before you give up hope, there is a newer T4 called Tirosint…it tends to not be on insurance formularies yet so your dr may have to argue for it…but it is a T4 with NO fillers…and when I was taking it it was the best I ever felt taking the hormone. That said, labs revealed my TSH perfect, my T4 perfect, my FT3 too low and my RT3 over 180 points above limit…so we had to stop. Although I am on T3 only, I still continue to have issues with fillers…and react and get hypo on all but from one manufacturer…and it is not the cure all. I have all the same thyroid issues…just not the RT3 or symptoms (I collapse) from too much RT3. It is also harder to get rx’d because it is not part of the “standard of care”…and more of a risk in that if something happened to you and you were unconscious and the people attending to you did not know, you could get into trouble pretty quick…I stuck a post-it on the back of my drivers license. And, it is inconveinent in that you take it throughout the day. And, after that…drs will tell you all your health problems are because you are on T3. On the T3, I do not lose weight despite eating very little (I am sick and on antibiotics so eating is an issue…I get less than 500 cal a day). Just some things you should know.
Low T4 suggests that your dose is too low (supported by your TSH) and/or you are not absorbing it. You could also be super converting it to RT3 to get rid of it…and being sick that is a likely issue.
Anyways, hope that helps…and by all means, follow directions for surgery and hope you have a speedy recovery.
Thank you for your reply Faith, I had read some of your other posts and found them interesting, I follow a very pro NDT forum on Facebook so I found your point of view compelling.
To explain myself further, when I take my medication as directed, I can lower my TSH to under 2 and raise my free t4 to within range but I feel horrible when I do. My doctor does not comprehend this and says its not thyroid related; from what I understood from this artcle, he is in fact correct, my low iron levels etc are probably making me feel ill, but I feel MORE ill on thyroid hormone replacement. Regardless, all the symptoms I had when I was initially diagnosed hypothyroid 6 years ago, constipation, cold, heavy periods, depression etc have only gotten worse. I feel like I’m in a catch 22. I’m probably loosing too much blood because I’m converting too much to reverse t3 and I’m converting too much tr3 because I’m loosing too much blood – it looks like its going to at least cost me the lining of my uterus (which is otherwise healthy but my Gyno is pushing for a hysterectomy) to get out of it. I pray I can increase my ferritin to mid-range and see things improve, maybe ill do better on synthroid after.
I can’t help but wonder though; if I had a more informed doctor and a combination of iron injections, detox and t3 (temporarily) , perhaps surgery could be avoided.
Hi Sylvie,
Sadly, many of the thyroid groups out there are riddled with misinformation…like just how many feel dessciated animal thyroid glands are “natural” when they wouldn’t probably eat hot dogs claiming that they were unnatural. Or, how they erroneously connect adrenal function to thyroid. I am like you in that I feel very sick on Nature-Thyroid. I think we have to also realize that glands “make” hormone…they are not-hormone. Also, the feeder animals are likely being fed GMO corn and soybeans which could be contributing to the issue.
That said, please know that every person has a different set point…you have to find what numbers work for you. Fwiw, the lab norms come from a bell curve of people getting their blood drawn in that lab…so, if everyone getting thyroid labs were very sick with thyroid issues…those number would start looking normal. And it is just a guide, not an absolute.
Like you, I am made very sick by thyroid hormone replacement…and do really feel better not taking it…even the T3…and NO ONE has been able to explain that. Again, I think it is something in it. I hope you will give Tirosint a try, it might be what does the trick for you…I felt good on it (re no side effects, ie didn’t make me need to lay down and fall alseep immediately after taking), only became symptomatic of RT3. I hope one day to be able to go back on it…or, that they make a T3 in the future. Even on T3, my TSH goes all over the place while my other numbers stay stable…from less than zero to 9, 14, normal, 17…and I had no symptoms of the TSH going all over.
Also, it IS possible for our bodies to attack thyroid hormone (it will def attack Natural Thyroid if one has thyroid autoimmune). Of all the tests in my list I was able to get, even the Mayo did not have the T4 Ab or T3 Ab tests.
Feeling sick and your numbers are a very different matter than RT3 and than the iron and the only thing that relates them is you, otherwise they are not inherently connected. High RT3 is indiciative of an underlying problem…starvation (although that is not likely the case)…or some underlying illness. For two years all I had to go on was my RT3 to suggest something else was going on. Your issues/re surgery could be behind that but probably not because of the iron. Low iron may give headache and shortness of breath…and anemia issues…but dose not affect your thyroid conversion or use. Both thyroid and iron could make you fatigued. Thyroid or illness could make you gain weight.
You sound like you are on the fence about the surgery…and it is always hard to know. Personally, I’d take an iron IV over the surgery unless there are other reasons for it. That said, it was sort of the same thing with my thyroid…I was sick, suddenly, with neuro symptoms including random fainting, vision issue…and fatigue and weight gain. They sent me to countless tests that to me seemed to have nothing to do with anything (dizzy tests for lightheadedness???), but all that came out of it was that my thyroid was huge. Well, I was getting headaches when I layed down at night that would last all night and go away when I arose in the morning…and the fainting. What did I know then? I ate iodine (regret that now) and my thyroid got bigger. Not knowing what to do and thinking it had to have had something to do with my symptoms…I let them remove it. Felt great for 20 days, my fainting stopped (never to return), then downhill from there…I didn’t convert, I’d collapse, slurring words. I am glad the fainting is gone…and if not for the RT3 issues I probably would have given up on drs altogether. Now that I know Lyme is part of the picture, I have come more and more to regret having let them remove my thyroid…it could have been saved and none of my drs told me. I don’t have the answers as to do or don’t…just that it cannot be undone. I don’t know enough about the utrine system to even know where to begin looking. I have also heard of a conditon that causes such severe periods as to soak one’s pants in a matter of a few minutes…in a case like that it may seem worth it. Bottom line is…you will not be able to know everything walking in that you will learn afterwards…all you can do for now is weigh what you can live with. Like, I had no idea I wouldn’t tolerate thyroid hormone walking in…but it was really hard tolerating the fainting…sort of six of one half a dozen of the other. There is no right answer…only what you do. Back then, if I would have tried to seek answers in groups…they would have said take iodine (which I did) opposite effect…later on though, I learned what I could have done.
What is clear is that *something* is interupting and messing with your system…*something* that no one knows what is (yet). When it comes to something more complicated like that drs are usually useless, studies are where you start finding…an education on pathways. Know, that as soon as you start getting the pathways, you will likely know more than any dr you will ever see…which can, in its own way, be an issue. I remember seeing a progessive endo…he told me that RT3 wasn’t an issue…I asked, does it dock in the receptors…he had to answer yes. I asked, well then, would that prevent the usable thyroid hormone from getting in? He has to answer yes. And you don’t see this as a problem? No. *Bang head against wall* That said, I understand…it is outside the standard of care…no one has assured them how T3 only works…but still.
As a final note, having the surgery will cure the periods and maybe help with the iron issue…but will probably not correct whatever the underlying problem is. Oh, you know…maybe try seeing an intagrative dr…they, unlike typical drs who only manage symptoms…they try to get to the bottom of things…and they use regular meds, but can also use herbs and nutritional supplements. You are likely to find more answers there.
Anyways, whatever you do is fine…either way there is something to live with…and one way or another, you will find a way through this.
Faith, where do you come to the conclusion that iron is not needed for conversion? There are many studies that show this is not true. low iron causes poor conversion from T4 to T3 and high conversion from T4 to RT3 and is suspected to be the reason for lower body temperatures of people with high RT3 which is attributed to the lower oxygen in the system due to iron anemia. Here are just a few studies:
239. Smith SM, Johnson PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of dietary fat. Life Sci 1993;53(8):603-9.
240. Eftekhari MH, Keshavarz SA, Jalali M. The relationship between iron status and thyroid hormone concentration in iron-deficient adolescent Iranian girls. Asia Pac J Clin Nutr 2006;15 (1):50-55.
241. Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78.
242. Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr. 1989;119:772-778.
Karen,
I can see that you have your ideas and seem to want to debate rather than take a look at the information…which is fine (for you)…I, on the other hand, really don’t care to debate or try to convince anyone of anything…because, as a Lyme patient who is pretty sick, not only am I not up for it…but not sure if you have any idea of the politics and debates going on in Lyme Land or just how devastating they are to the care of patients like me. In other words, because their desire to debate…I (and many like me) suffer…so I no longer see the need or value in it and instead prefer to just walk past all the debaters and continue forward as though they don’t even exist.
Also, as a thyroid patient who was given a virtual death sentence when all my symptoms were still being attributed to my not being able to process thyroid hormone, as though my symptoms were stemming from my thyroid failure rather than stemming from another cause that also happened to contribute to my thyroid failure…not only do I get the extent of the disservice we do to ourselves, each other, and patients who are sick by wrongly attributing things to the wrong cause, I have been to many of the sites you and everyone else have been to and read the books and tried all that they say. Had I, like you, continued to hang steadfastly onto what they were suggesting, I’d be dead right now. So, you will have to forgive me for having walked past that and having done my own research. Furthermore, and I hope that you will take this point to heart…IF what those sites and non-doctors were saying were true, and IF that worked…then Chris here wouldn’t have needed to write this article…and everyone’s thyroid problems would be solved.
When I was handed my virtual death sentence of, “well we have tried every thyroid hormone there is and none of them has worked, and well you know that you cannot live without thyroid hormone,” at which point I was bedridden with RT3 levels over 180 points above range…I took it upon myself to figure out why nothing was working. I like to be thorough and because quite frankly I didn’t have the time to miss anything, so I started from the ground up. I researched the entire thyroid system from start to finish and everything involved…I even made a flow chart that if I could I would link here for you, and I made a list of absolutely every test that we could run in order to systematically knock them out to try to find out exactly what was going on (rather than the countless hypothesis’s of what people think or imagine might be going on)…and I started at the top, with the hypothalamus…then followed it to the pituitary…and then followed it to the thyroid, to the blood stream, and to the liver…it was fascinating…and eye opening in that at no where in the chain of events that take place were the adrenals connected…at all (except the hypothalamus and pituitary by separate function). Do you know how the liver converts T4 to T3? I am guessing you do not…so I will invite you to likewise do your own research…and will share that it makes for fascinating reading.
The primary reason for the over conversion of RT3 is that there is an underlying chronic illness, for me that happens to be late stage Lyme (lucky me)…and one of the primary symptoms of Lyme is a lower than normal body temperature (which you probably did not know). You also probably did not know that the majority of people with Lyme Disease do not have thyroid issues or endocrine involvement (other than low body temperatures)…nor would you know (unless you also had Lyme and followed the research), that many with Lyme will DEVELOP thyroid and other endocrine issues in the course of their disease process. There is a lot of research going on to figure out why that is, how that happens, and what (if anything) to do about it.
While you are unwittingly pumping people full of iron not realizing that it would feed their biofilms (many have a biofilm issue in addition to Lyme that makes their condition almost impossible to treat), essentially making them much sicker, often devastatingly so. What the public does not know about Lyme (because it is generally considered a mild flu-like illness) is that it is far more devastating than cancer and even AIDs, it mimics Lupus and MS (often being misdiagnosed as such), and to date there is nothing that kills it…it often leads to severe disability…so, I would hope that you would take this as an invitation to perhaps re-think what you think you know. You also probably did not know that if one simply treats the underlying infection that the endocrine issues tend to resolve themselves on their own. I am pretty sure that you did not know any of this, because unless you had opened door number 2 and gotten the booby prize of Lyme you would not have cared to look into the ins and outs of treating a hard to treat systemic progressive infection for which we have no cure for…and for which treatment for tends to make a large number much more sick.
As a thyroid patient who fits Chris’s description in his article here, I have to say that I have come to agree with his views (in part)…that it is not always a good thing to supp thyroid hormone to someone with a chronic infection for which if you resolve the infection that the thyroid issue will resolve itself. Where I do not fit his views, is that I do not have a thyroid so I must supp thyroid and understand that as a thyroid doctor he unfortunately also probably does not know very much about the ins and outs of the various underlying chronic conditions and how they interact with the thyroid system via the larger endocrine system.
As a patient with a, albeit small, string of diagnosis’s I can understand and appreciate how it is that people once given a diagnosis tend to view all things stemming from that one thing (ie that all things stem from thyroid issue) as opposed to looking at the diagnosis of the thyroid issue as still stemming from a larger endocrine issue picture. Part of this problem becomes the insidious overlapping of symptoms (ie contributing low body temperature to thyroid rather than realizing it is a sign of hypothalamic involvement). Where perhaps that is most evident and problematic is in the attribution of adrenal issues to thyroid issues when in reality it could not be more telling that the person’s issue is based in the pituitary or hypothalamus rather than the two organs at the end of the chain. And, since I am fairly sure you are aware of what I am talking about, the tragic part is that no where on the misinformation sites do they suggesting helping or even testing the pituitary or adrenal function…only that the crutch the adrenals and thyroid, limping them along as the true area of deregulation (pituitary/hypothalamus) is ignored. Worse, and often not realized, is that when the pituitary or hypothalamus is failing, the low or high thyroid or adrenal numbers have nothing whatsoever to do with the thyroid or adrenals. Supping thyroid when the issue is not truly the thyroid will cause the thyroid to produce less hormone…which will cause doctors/other practioners/patients to supp more thyroid hormone and a vicious cycle takes place until the thyroid stops producing any hormone and atrophies at which point the patient is now dependent on thyroid hormone for life when it had never been the thyroid to begin with. What they do not know really is hurting people.
How can I say not iron, well…show me that the enzymes the liver makes to convert T4 to T3 need iron…and then show me that without iron that they instead make RT3. Not limited studies with mice or rats, but show me the biological pathway…because it is not there.
As to your hypothesis that low iron affects body temperature, well…low iron causes anemia…ask yourself this, do all people, everywhere, who have anemia have lower than normal body temperature? Probably not…so this disproves your hypothesis. Also, you add that they have lower O2, ok…same question, do all people everywhere who have low O2 levels to the point that they need O2 machines have lower than normal body temperatures? No, they don’t. Your hypothesis fails, I am sorry.
Instead, I can show you that the hypothalamus is indeed the biological setter of body temperature. While I am not sure how it is all the people behind the thyroid sites and misinformation missed this fact, but it is clear that they did. Studies have shown that inflammation in the hypothalamus will cause the hypothalamus to reset the core body temperature lower. Now, there are numerous reasons why a person may have inflammation in the brain, but most of them have to do with some sort of underlying illness or disease process (underlying illness is also connected to high RT3). Again, unless you have an underlying hard to treat chronic illness of some nature then you probably are not aware that many are now being connected to possibly stemming from some chronic underlying bacterial/viral/fungal/parasitic infection that is making multiple systemic changes to the way the body functions. We know that the various critters who take up residence within us not only want to stay alive but that they have quite advanced survival mechanisms. And we know that a very common symptom of late stage Lyme is a lower than normal body temperature (that has nothing whatsoever to do with thyroid function). Studies have come out that have shown that inflammation in the hypothalamus can reset the core body temperature lower…which makes perfect sense since people with Lyme tend to have widespread inflammation. Of course, so do many other diseases. And hypothesis’s were formed that it is possible that some of the various critters that take up residence within us may lower our body temperature purposefully both to help disable our immune system (which is necessary for its survival) and to perhaps make the host environment more suited to its needs.
In any event, although low body temperature IS part of the endocrine system…it is not connected to or stemming from thyroid dysfunction (nor is it connected to or stemming from adrenal dysfunction). Instead, the reverse is true, those with either hypothalamic or pituitary dysfunction can have symptoms and signs of dysfunction in body temperature issues and deregulation, as well as issues and deregulation of thyroid function, as well as issues and deregulation of adrenal function…BUT…that this then is more accurately a sign of pituitary or hypothalamic issue and NOT thyroid or adrenal issue, and that the thyroid and adrenals are subsequent to something going wrong with the pituitary or the hypothalamus. Again, treating thyroid or adrenal or both when it is truly a pituitary or hypothalamus issue causes harm to the patient that the patient is usually not made aware of.
Hi Faith,
I empathize with your condition . I was also dealt a cruddy hand in life getting an autoimmune disease (Stiff Person Syndrome) that has a frequency of 1 in 250K to 500 K depending on who you listen too. It has stolen 12 years of my life and ironically the disease is typically in action eating away from underneath, nibbling at the roots in a person’s CNS, for an average of 8-12 years before serious symptoms are evident which puts its origination back somewhere in college or grad school for me (I am 43 now).
All I can say is keep fighting and don’t lose hope. You seem to be handling a very tough disease the very best you can. The fact that you are actively researching things and share your experiences and advice with others is a positive sign. I hope that did not come off in a patronizing fashion since that is honestly not my intent.
Couple of scientific points (I love research as I used to be a physicist but have now worked almost 20 years in bioinformatics and computational biology).
You are absolutely correct about RT3 and chronic infections. I would just add autoimmune diseases to that list. The saving grace in my case is immuno-suppressants are and must be my front line of defense. Still T3 only treatment has been the only way to get out of a terrible RT3 logjam. As their is no cure for my condition, I see no way to abandon that treatment option probably ever.
In terms of iron. Biofilms are a real problem. Iron feeds many infectious agents sadly. I think supplemental iron in most forms is a disaster for many. The only source that is ever worth damn (long experience with failed alternatives, trust me) is heme iron found in foods. Period. But again iron can cause more harm than good in some scenarios. It is tragic since iron is key to both the Krebs cycle and metabolism. Also neurotransmitter production of dopamine and serotonin. Y
ou are correct that iron has nothing to do with T4 to T3 conversion. But there is more to thyroid hormones than simply T4 to T3 conversion. Low iron is a serious metabolic problem since even if the T3 gets to the nuclear hormone receptors and give the nucleus instructions, low iron will adversely impact the proper gene transcription of those orders. This is of course not exclusive to T3 but other nuclear hormone receptor binders as well. Ironically, this has little to nothing to do with serum levels, but with iron available to cells in tissues and organs.
In my case near the “start” of my saga, I had a couple of very bad doctors (I was in bad straights) who misdiagnosed me with hemachromatosis after a bad bout of CMV and EBV. Those doctors proceeded to phlebotomize me down to ferritin levels 100. And that was after many failed attempts to supplement iron (most of which made co-morbid fungal and gut infections worse).
Ironically I was suffering from severe RT3 induced hypothyroidism numbers though my thyroid itself seemed fine. The real irony is at the time, hypothyroidism was one of the least of my problems which I am sure why my body adopted that pattern. No one even checked RT3 or C3a complements, etc. until late 2009.
Another comment: while the hypothalamus is the arbiter of body temperature it does this through TRH signaling. Ultimately T3 in the cell then dictates to the mitochondria how much uncoupling should occur for thermogenesis (virtually all energy comes from the mitochondria of course and heat is energy). This is done primarily in the skeletal muscle and increases O2 use in those cells and increases TCA cycle flux by an average of 70% (flux not ATP). Note contrary to misinformation on the web, T3 does not impact the amount of ATP synthesized (at least not with significance) but it at the original upstream instruction of the hypothalamus.
T3 is the mediator at the mitochondrial level to facilitate metabolic redirect of proton leakage across the mitochondrial membrane for uncoupling to make heat. If somewhere along the line that is blocked either at the thyroid itself or say RT3, the hypothalamus can try signal whatever it wants, the results will still be undesirable.
These systems of hormonal and neurotransmitter control are so complex it is hard to attribute a downstream effect like basal body temperature to necessarily hypothalmic or pituitary dysfunction. However, it is true that the immune system has strong override / veto capabilities at multiple points of entry in the complex web of interactions on the HPT, HPA and other axes, both upstream and downstream. This is likely a built in defense mechanism to get a person to sit down, sleep and let the immune system work. Unfortunately the immune system does not have a kindly interpretation of chronic infections or other chronic immune related disorders. It simply does what it thinks is right, all the time. It does little to consider what its own aggressive actions may do to the body over extended periods of activation and immunological warfare. The only way out inmost cases is to treat the primary cause that riles the immune system and get the immune system to eventually let go of control. Only then can hypothalmic and pituitary function be re-enabled.
To be blunt, in the past natural selection would have weeded people like us out, since if you had a long term chronic condition you simply died. Clearly the human organism is a work in progress.
On that cheery note, good night and God bless.
Hi David,
Unfortunately, Lyme is taking its toll on my brain today and I understood much more of what I read of your response than I will undoubtedly be able to communicate. While I agree that medical science has been slow to indentify biological pathways and mechanisms of autoimmune and chronic conditions…so much so that, I agree, there is little we can do but run around putting out the small fires of challenging symptoms. I too have EBV and blood work that suggests viral action in the mix…as well as a positive ANA at 1:640 and RA Factor as well as low grade chronic inflammation that is not abated with cortisone or hydrocortisone. For a while they thought I might have MS or Lupus, so when I got the Lyme dx I thought I was lucky because at least there is a treatment. However, despite my hopes, I have become much worse from the treatment (mainly abx and herbs that stimulate the immune system) which has left me wondering about the possibility of autoimmune. That said, many in the Lyme community have reported becoming much worse on immune suppressants…as well as my own short stint on Prednisone worsened me.
My heart goes out to you with Stiff Person, and a cursory read of the wiki and it would seem that since the change in my medications (hard to say if it was the loss of the abx that cross the blood barrier or the intro of Cipro which has tremor as a side effect), I seem share many of the same symptoms. What was of particular interest to me, was that in physical therapy the largest help has been what they called “nerve stretching”…but even in their just stretching me has given me back some ability to stay moving. It wears off of course. The other thing that caught my attention was the GABA issue and I cannot help but think of the MTHFR gene issue. It is hard to get information about it, but it seems to be connected to the manufacture and processing of many various things…like the B12 you mentioned. Although, I do not know very much about it…I will link the paper that (I have yet to read) that my doctor gave me (maybe you can make better sense of it). People with Lyme often attribute a worsening of symptoms to the “herx” response (although I am not sure I agree) and an inability to detox…and they are attributing an inability to detox to the MTHFR gene…but again, trying to find some evidence of that in research has been futile for me (although I am also contending with my failing brain in that so is hard to say if it is there or not). I have had the labs drawn for the MTHFR at the advise of a doctor I saw, but for me the only sign is very high levels of serum folate…as well, eating greens make me feel unwell and I have stopped digesting many of them which I took to be my body’s way of protecting me. MTHFR also deals with folate metabolism…but again, information seems hard to get on that. Anyways, so adding here on the off chance that there is anything in that of help to you.
http://www.heartfixer.com/AMRI-Nutrigenomics.htm
Lyme is just beginning to be linked to autoimmune, so far only in the arthritis area, but if so…if that is what the chronic, persistent, difficult to treat Lyme is…then it would make perfect sense why abx are making many worse. The people who ran the D studies (again, I am opposed to Marshall’s conclusions and protocol), but the people believe that most autoimmune is a response to or caused by some underlying (infection is probably not the best word)…but includes viral. Although, how do you fight that when immune stimulants make it worse? Dr. Datis K’s book on thyroid autoimmune, he gave an interesting hypothesis on how to do that by finding out which side of the immune system is overactive and stimulating the other side…indeed, if I can ever reclaim some use of my brain again, I hope to make a plan for getting testing and devising some kind of treatment plan for myself based on that. Although I have joint pain and grinding, and although that makes living life rather difficult, it is some of the easier symptoms to cope with. For me the area of concern is the nervous system issues…the twitches/jerks/tremors although annoying and embarrassing don’t seem to be threatening life…but the cognitive loss has been tremendous in my case (although it is hard to notice as I am writing here) but my ability to understand what others are saying or describe what I am going through or need or even understand where or who I am, that makes me very vulnerable…and the issues that I suspect are stemming from the autonomic system…breathing, high heart rate with low blood pressure, inability to digest foods…that I cannot seem to expand one side of my chest…all of that, although not off the charts or enough for drs to do much of anything about, amount to make me feel very poorly and is like my body struggles to stay alive.
Although my brain can’t sort it out today, like you, am very much in need of medical science to advance in their understanding of disease pathways. Despite the fact that I struggle to describe it, it would seem that we could come up with a better testing panel(s) to more clearly rule in or out various pathways (for example the C3a and C4a to differentiate Lyme from Lupus would clearly help a percentage of both groups who have been misdx’d and are made to suffer worse on treatments). And I say this because it would seem that almost all the progressive hard to treat not well understood diseases all sound very similar to one another with nearly same symptoms and issues.
Anyways, my heart to you David, hang in there and sorry my brain isn’t working better today.
I’m a computer programmer and analyst by trade so my knowledge or interest of anything health related was quite minimal until i started getting sick… im french to boot and all these studies seem to be only available in english – I do my best.
I read in the “International Journal of Pharmaceutical Compounding Vol. 12 No. 6 page 493 “Ferratin levels may need to be in the range of 90 to 110 for optimal thyroid function.” This study was mentioned in an article on How stuff works entitled “Understanding Thyroid Metabolism” which is how I found it. What I don’t know is why or how this statement was made, just that it references Lee JM. Functional Endocrinology: Thyroid. Presentation made at: Professional Compounding Centres of America’s Functional Endocrinology Symposium; August 18-20, 2005 Houston, TX.
That said, really heavy periods can lower much more then just your hemoglobin and ferritin levels. I don’t think any of the Levothyroxine Sodium studies were made with people who are anemic in mind, in fact, I suspect being anemic would knock a candidate out of most studies. So I don’t think we know all that much about how people like me metabolize it – I’ve never had an RT3 test done but I would be curious to know. All I can tell you is: synthroid does less than nothing for me – no proof or studies to back it up; just the fact that I still feel sick.
You say I seem on the fence about the surgery and you are correct; in fact I don’t want it – I feel pushed into it because loosing this much blood/feeling sick is simply no way of living. The only reason I’ve resisted the hysterectomy that have beeen offered for the last 10 or so years is because no one has told me there is anything wrong with my uterus… I’m getting the surgery done but for me it’s essentially giving up.
My daughter who’s 18 is starting all the same issues I’ve gone through and I would like to think there is another solution to offer her but what can I tell her?
It does seem that the higher my TSH the longer my period and I understand that heavy bleeding is a symptom of hypothyroidism but the blood loss is never what one would call anywhere near normal, regardless of TSH.
You mention Vitamin D and though it was never tested, I live pretty far north and my access to sun in the winter is nearly non-existent – I’ve often wondered if that is not the source of the start of my issues, I take some supplements nowadays, but its hardly a replacement.
The auto-immune aspect of hypothyroidism seems to be brushed aside by most medical proffessionals. I have to try all these things on my own. This week I’m trying going gluten-free (in addition to being vegetarian/vegan-ish for nearly 2 years); not sure it’s worthwhile but willing to try just about anything at this point.
All in all, I hope more research is done which is why articles like this one are so exiting… Many doctors seem to think that we’ve already found a cure and that it’s simple – I beg to differ!!
I say this only half jokingly; it may come to pass that all we need is a poop transplant! I seems gross and all but if it comes to light that it can fix thyroid issues – ill be running to get inline because I’m sick of feeling sick.
I’m finding this discussion very helpful, especially with the references to Chronic Disease. Sylvie, I was (and am) able to control my bleeding with T3 and the occasional progesterone. While my iron levels are inching up after years, it appears I’m not absorbing much of any vitamins or minerals as everything seems depleted. Best of luck to all and thanks for the robust conversation.
Hello Beth,
I’ve tried progesterone in the form of creams to no avail but never t3. I would like to try Cytomel but my doctor has no experience with it and is very resistant no anything that does not conform. Still, I feel I’ve gotta do something since the status quo doesn’t cut it.
Best,
Sylvie
Dear Sylvie,
Creams will not stop the bleeding, I too was given creams and even a very weak prescription by a couple of doctors before finding a doctor that acted. If the bleeding is that severe and prolonged you need Prometrium which comes as a capsule. I was taking 200 MG nightly for 14 days which did the trick. With the T3 it seems I was able to normalize my hormones enough to avoid surgery but it did take a few months to regulate. Have they offered you an Ablation instead of a hysterectomy? A Cryoablation seems much preferable to the standard ablation as it freezes the lining of your uterus instead of burning it. Of course its best to avoid it all and I feel fortunate that I was since that was the path I was on. Perhaps ask a local pharmacist who in their practice prescribes Cytomel or Cynomel (the Mexican version I take) and seek them out.
Best of Luck! Beth
Hi Sylvie.
I tried progesterone creams and they didn’t work well either. what worked for me were capsules from the compounding pharmacy. Even just 25mg does the trick for me. I started out at 50mg and backed off to 25 after a couple months.
Karen
I’ve been through the ringer when it comes to hormone pills; I don’t think there’s a whole lot that was missed. Some birth control worked temporarily and then the heavy bleeding returns.
In Mid-November I was injected with Zoladex to thin the lining of my uterus and it was supposed to trick my body into meneaupause for 3 months (little or no period). Well, in December my period lasted for 16 days of heavy bleeding. A blood panel in January revealed that my iron, TSH, t4 were too poor for me to get the surgery, even though I was on Feramax 150 mg daily at the time.
A couple years ago I was diagnosed with a skin condition of little consequence called tinea versicolor which has become difficult to control in the last few months – it seems to flare up soon after treatement – it makes me wonder weather what ever autoimmune situation I have causing psoriasis, possibly my thyroid situation is still very much active and what other conditions it could possibly throw at me..
I’ve since doubled that iron dose and increased my synthroid but I think I’m passed the 3 month mark on the Zoladex. The gyno’s office called and said the want to spreak to me after I get my TSH in range. I suspect they will either give me another injection ($1053.00) or insist again on a hysterectomy. I’m at the point that ill just follow the path of least resistance – I just to feel ok in the least amount of time; I’ve already spent too many years on sub-par health.
Oh gosh, I’m so sorry to hear about all that you’ve been through. In a very teary and unexpected decsion on my part, I walked out of a pre-op apppointment thinking I’d do the same thing but I just couldn’t do it until I tried the T3 and in the end found a better doctor (who has since moved across country)
I’ve had (cleared up) and recently developed a skin condition as well! Turns out I have parasites, it could be at the root of all the problems.. Dr says its the water in Georgia! Heck if I know, I have travelled to some farflung places. Since I’ve been diagnosed with the parasite, I haven’t been able to get rid of it, though I’ve most likely had it for a while. I continue to dig for the reason for my thyroid problems but that’s only because I was able to stop the bleeding! I couldn’t do a thing till I did that, I had one period that lasted 4 months. If you can stop it, I know you’ll feel better, even if its a hysterectomy. You can get Cytomel from Mexico without a prescription but not many are willing to go out on a limb. I’m so sorry for all your troubles.
Beth
Dear Sylvie,
I have almost identical symptoms to you with same tx suggestions. No surgery for me instead I started on liquid iron (absorbs better) in juice with straw before bed. Brush teeth after so will not darken. Need to take 5 hrs away from thyroid meds. I take Armour thyroid with T3 twice a day in am and afternoon. When iron and thyroid levels in range then period is relatively normal.
If your doctor won’t try Cytomel, maybe he would refer you to a specialist? Anyway, your bleeding problem reminded me of years ago when I had one for nearly a month. The doctor told me to take Vitamin K and if that didn’t work, he would do a d n c.(we called it dust and clean, don’t know what it really is). Well, the K worked right off! Might seem too simple but if you haven’t tried it, maybe you should. I also have had anemia for years and years without a known cause (not from low iron, they think because I have copd) and the only thing that has seemed to help at all is taking liquid chlorophyll.
Sylvie, it’s been a long time since you were posting on this topic of your heavy/unending period. Perhaps you have resolved it. I was researching something else and just came across this thread now. I worked with a patient with the same problem. It can be remedied with extremely high doses of vitamin A (fully formed, NOT carotenes). I only recommend Blue Ice fermented cod liver oil, not the cod liver oils that you can buy retail). Regular retail ones won’t work because the heat that they’re exposed to destroys the natural fully-formed vitamin A. It worked like a CHARM. After years of bleeding that would never completely stop, it resolved for real. Here is a letter detailing one woman’s experience: https://www.westonaprice.org/health-topics/womens-health/one-womans-story-of-treating-heavy-bleeding-and-fibroids/
Sylvie,
No, I hear ya…I just don’t have the answers. If you are not comfortable with the surgery, then maybe try the T3 first.
I know that anceint knowledge on vitamins and minerals had the reccomend that women eat liver daily until menopause. Men do not lose iron like women, which may account for little research or care from the medical industry.
That said, I will say…I know why studies say that and drs say that…because when untruths are told often enough and long enough (ie world is flat and how dare you say otherwise), people accept them as truth. Which would be fine IF it made people well and resolved their issues….but it doesn’t…because it was never it. People with thyroid issues pump themselves full of iodine, selenium, and iron…and they still have thyroid issues. I guess it is only when you have tried everything and done everything and it still hasn’t worked…that you cast your search farther…and when that doesn’t work, eventually, you come back to the begining…ie, lets start with thyroid pathyway function 101. It was there that I had my ah ha…but who am I to stop people trying every thing anyone who ever wanted to make a name for themselves said? I only step in when I percieve it to be a possible leath risk…ie thyroid autoimmune and someone giving the advice of taking iodine.
Likewise…one has to get savy at understanding studies. Many meds are approved, and treatments approved on very strange grounds…but looks legit. So here is an example, 20 people with pain…we give 10 a placebo and 10 say a blood thinner. IF more of the 10 on the blood thinner had pain reduction than the placebo group…that blood thinner gets approved by the FDA to treat pain. Now, does it treat pain? Probably not. But 95% of the population will believe it does (including 95% of drs) simply because the drug company said it did and the FDA approved. Fwiw, I entirely toss out those kinds of studies because they really are essentially meaningless. Instead, I look for the pathway…like the pathways of pain and the pathways of blood thinners, they dont ,atch up. Or like in the D studies…they detail the entire pathway(s) of Vit D…because then things start making sense. For example, learning that the Vit D Receptor IS the thyroid receptor…now, a person with normal thyroid blood counts with hypo sysmptoms who happens to be taking a lot of Vit D suddenly makes sense.
Anways, I only meant to reach out and offer support…hope it goes well for you.
I am curious Faith you mention the Vitamin D receptor is the thyroid receptor. While the 1,25 active form can bind to T3 receptors, there are multiple thyroid hormone receptors. T3 does not bind to VDR but 1,25 active form binds to thyroid and glucocorticoid and adrogenic receptors.
Here is an interesting preprint regarding the link to Vitamin D and Thyroid receptors.
http://autoimmunityresearch.org/preprints/ProalAnnals2009Preprint.pdf
Check out table 1. The associated disassociation constants are pretty scary.
Note I am pretty sure these researchers are affiliated with Marshall but some of the data and research seems interesting.
Blimey. That’s concerning. It might explain why my 25D levels are so low (approx 12) yet my bone density is so good. Not sure of my chances of getting the 1,25D levels measured however.
Hi David,
Oh thank you, what a fascinating study this is…esp in how they are hypothesizing that the Vit D Reversal Pattern could be a sign that an autoimmune condition exists…which would be EXCEEDINGLY helpful in the Lyme Disease community because so far the hypothosis that late stage Lyme could cause an autoimmune condition is in the earliest stages…this could possibly give us an easy test that is readily covered by insurances to indicate IF someone is autoimmune. How that is helpful, is in that this could lead to a significant reduction in the suffering of people with late stage Lyme Disease that are being made worse on immune stimulating treatment! Oh David, you are awesome! Thank you. 🙂
One thing that this brings clearer to focus is that all these competing studies show is explanations of hypothosis’s. Here is the study that I got the comment that the VDR is the Thyroid Receptor:
http://www.mendeley.com/catalog/vitamin-d-neuro-immunomodulator-implications-neurodegenerative-autoimmune-diseases/#
“Vitamin D acts through two types of receptors: (i) the vitamin D receptor (VDR), a member of the steroid/thyroid hormone superfamily of transcription factors, and (ii) the MARRS (membrane associated, rapid response steroid binding) receptor, also known as Erp57/Grp58.”
But now see, I may have leapt a little…as it is a family of receptors, that in light of the study you offered, shows how it does that…interupt the T3.
What I think I’d like to know…is how do they know that? I mean, what tests do they use to ascertain *what* is going on in a receptor? And, more importanty, how do we get said tests?
Anyways, is brilliant…thank you so much!
Hi Honora,
Not sure what country you are in, but in the USA it is a ready test that you should be able to get about anywhere…and is covered by insurance. Ironically though, like the RT3 test, it comes with a disclaimer at the bottom of it not being an accepted test. *Baffled at the utter slowness of the medical powers that be to keep up*
Although my 25-D result is not back yet so I will include my previous result (and as I have not been supplementing is likely lower now)
25-hydroxy-D (previous test result)
…D2 = 0
…D3 = 26
Total 25-hydroxy-D = 26 (30-75) LOW
1,25-hydroxy-D = 52 (15-75) PLENTY SUFFICIENT
Again, as I have not been supplementing and…this would seem to suggest the Vit D Reversal Pattern…it might be interesting to test again after supplementing.
You are most welcome Faith 🙂
Yes the VDR is a member of a large family of nuclear hormone receptors that includes also thyroid, adrogenic, and glucorticoid receptors.
What is impressive is how strong the active metabolite 1,25 calcitriol binds to those other receptors (very promiscuous).
My hypothesis is that in an autoimmune disease or even maybe chronic infections, the immune system uses this very mechanism as a command override to lower the impact of cortisol, T3, and sex hormones to make the person throttle back and “lay in bed all day”. This allows the immune system to do “its work”. But as we can see in actual autoimmune diseases or chronic infections that the immune system cannot solve on its own this can be a real problem. Of course we all need some amount of 1,25 active but it also has to be in equilibrium with the 25 OH metabolite.
This explains something for me. In fall of 2011 I was put on massive doses of 50000 IU 3 times per week by my internist. I felt so unbelievably tired and depressed for 2 months, and I noticed symptoms were always the worst on the day I took the dose and yet things got progressively worse the further I went along with it. Finally by the holidays, after talking to my neuroendocrinologist I just stopped and while I was tired at least I was somewhat coming back. During all of this I was taking 75 mcg of T3.
In late December 2012, I had been off any vitamin D for about four weeks. My labs showed 88 (30-100) for 25 OH and like 77 (10-75) for 1,25. While the ratio was considered balanced by the Marshall people the actual 1,25 was overboard.
I continued taking no vitamin D and in the middle of January my neuroendo raised me to a 100 mcg T3. And guess what I started feeling better faster. My guess is I was laying off vitamin D but I still needed more exogenous T3 to try to get some semblance of activity past the 1,25 floating around.
Now I take only 75 mcg a day (granted I need to still divide doses) but I only take 2500 IU vitamin D a day and my labs are 37 for 25 OH (which my internist is all worried about of course) but my 1,25 is 58 (10-75) which while the ratio is not right at least it is not saturating all those other receptors. The point being I feel much better now than a year ago even after I started to perk back up from the disaster of 50K IU vitamin D. Gah!
Hi David,
We have very similar D panels…my 25-D is 26 so LOW (and might be lower now since I haven’t supplemented for months), but my 1,25-D is in the 50’s so plenty adequate. I am choosing to view this in the same way that I would thyroid…just because T4 might be low if T3 is adequate then probably should leave well enough alone.
The studies leave me with many questions and unsure what to advise or think about it other than to advise testing before supplementing. As for me, my 25-D was originally 6 before they removed my thyroid…and I try to supplement and feel good for a short while and then worse…when I stop I begin to feel better again. And my feeling about endo hormone supping in general is to do so with caution.
Re Marshall…he seems a smart guy and the research is great…but I don’t necessarily agree with his conclusions. I don’t think it needs to be cured…necessarily…or if we even could. I do think that the D issue could explain why some people with normal thyroid levels are hypothyroid…and a much simpler fix that supping thyroid.
🙂
This is why I think I might have a problem getting this test done (in this town at least).
“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. External Price $481.85(Exclusive of GST)”
That price is about US$400 and has to be sent to Australia from New Zealand as a frozen sample. Maybe I could find a cheap lab in the States and send my frozen sample blood over. Or it might be cheaper to see what’s happening with the parathyroid hormone as Vit D and PTH have some kind of relationship. Time to pick the brains of the steroid boys again!
Oh Honora, I get that you are not in the States…yes, that may be a problem (most countries don’t recognize Lyme at all either…is very sad).
The argument for the test would be that you want to rule out the Vitamin D Reversal Pattern that is present in some autoimmune conditions…and that you would like to verify that you do not have too much active D. Drs tend to need something to hang it on…a billing code…and you could say that taking D makes you feel sick even though you are low. I don’t know…these aren’t very good answers.
Anyways, you can always just ask. I found when it came to having to argue for a test (like the RT3 tests), that the best tatic was to 1) present sound medical argument/evidence that warrants the test; and 2) say, “I would like that test and unless you have a good sound medical reason not-to run that test.” Over the years I had to get exceeding good at medical arguing. Ultimately, it is better to have a dr who cares about you enough to just run it just because you’d like it.
Anyways, good luck…I hope it works out. 🙂
It really is worth grinding through that preprint article David posted above. I find persistent rereading allows the message to eventually filter through.
Hmm…that steroid scientist didn’t know much. He said normally the 1,25 levels are lower than the 25 cholecalciferol levels because the 1,25 form doesn’t stay in the body for long. Think I’ll try the rheumatological immunology research group that I noticed in our hospital corridor today!
Hi Faith, sorry to be so slow to respond, I’ve not been feeling well.
What do you mean concerning Vitamin D? That it could essentially clog up the thyroid hormone receptors?
I take about 1000ui (I think it’s the smallest dose) since there is NO sun to be had; in December, I go to work in the dark and it’s dark again when I come home. I take D about 3 months a year; usually stop when the days get a little longer.
Supplementing with iron never really made sense to me; it’s quite literally prescribed by my doctor but you’d think that if my iron’s depleted; all my other nutrients & minerals would be equally depleted… Never really undrerstood that but it’s been prescribed to me on and off since my teens (even before I ever got my period strangely).
Thanks for reaching out.
I was also prescribed iron supplements when I was young–before having periods. I suppose it was how they interpreted low thyroid symptoms.
I was low in energy and I fainted sometimes. I was also often cold as a child, but I didn’t realize I should mention that as a symptom. Actually it was my Mom taking me in and talking to the doctor.
Hi Sylvie,
I am likewise slow to respond, sorry about that. What I have found in regards to vitamins and minerals, that it is not near as straight forward as all that. For example, I have high folate levels and not only feel sick when I eat greens, I generally do not digest them. Later I found out that I have a defect in the MTHFR gene which instructs the creation of the enzyme that adds a methyl group to folate. That led me to find out that I have a huge problem with methyl groups…and my understanding is that some others have issues with sulfur or ammonia…which we break our foods down into these various things. So taking some vitamins and minerals could work for some, but be super disasterious to others depending on one’s genetics. I know, I know, uber complicated…but so is vitamin D. I will try to make it easier to understand.
Vitamin D is not a vitamin (we don’t need to get it from our diets because we make it)…also, it is an endocrine hormone (like thyroid and like adrenals). When they test Vitamin D levels…they use the 25,D test…this tests for the storage form of Vitamin D…sort of like testing T4 and assuming one is low. The test one really wants is 1,25 D which tests the active form…and just like the RT3 tests, it comes back with the for research only disclaimer. That said…many with a certain genetic tendency (and many of us sickies have it) will always have low 25,D…but perfectly fine 1,25 D….So like always low T4 but perfectly fine T3. It is just the way some of us are. Just like you would not supplement someone with perfectly fine T3 with thyroid hormone, if one has perfectly fine 1,25D, then one does not need supplementing.
Vitamin D, an endocrine hormone…and like all things endocrine that either turn activities on or off…it is a steroid and an immune suppressant (so good for those with autoimmune…not so good for those fighting a bacteria or virus).
There has been a lot of confusion just recently about Vitamin D…some have mistakenly been calling D3, “active” and D2, “inactive”…this is so not-true. BOTH D2 (plant source) and D3 (animal source) are in the form of “calciferol” (D3 is: cholecalciferol; D2 ergocalciferol…both of which which must be converted to calcidiol (in the liver) and then calcitriol in the kidneys. Calcitriol is the TRUE biologically active form of the hormone known as Vitamin D. Where the confusion came into play, I believe, is that studies have shown that D2 is absorbed slighty (only very slightly) less well than D3. So D3 is really not-active…nor is it necessarily any better for you (so vegetarians need not worry). However, due to this confusion…very recently (the past year) some well known doctors and practioners have begun making a huge error in calling 1,25 D…D3…it is not. And recently this mistake has begun showing up on the wiki and other more reputable sites…which is misleading to people to say the least.
So…next we come to the Vitamin D Receptor…which is, incidentially, another thing that is tested for on the 23andMe genetic test (of which I have a double mutation for). Some of the genetic doctors are making the D3 – 1,25 D mistake as well…tragically, because their proper understanding of this is crucial to our health and well being. Anyways, and you will find most of the function of the Vitamin D Receptor in auto-immune research (rather than thyroid or open ended research), but again remember that Vitamin D is an endocrine hormone just like Thyroid is…it helps in understanding how they share the same receptor.
Okay, it is not as complicated as the genetic stuff, but it is certainly complicated. There is a body of evidence mounting (and the reccomendations from that evidence I strongly disagree with) that the autoimmune condition MAY be caused by an underlying low-grade bacterial infection…since I have both a low grade bacterial infection and autoimmune markers this is what lead me down this road where I learned about the true (rather than hypothesized) function of Vitamin D…and the shared receptors…and the “displacement” of T3 from the receptor from excessive 1,25D…the true biologically active form.
So, going back to taking D3 (which is cholecalciferol aka 25,D) and how our bodies turn it into calcitriol (aka 1,25,D) the true biologically active form. Our bodies do this with an enzyme called “25-Hydroxyvitamin D3 1-alpha-hydroxylase” or “CYP27B1” for short. It was found that many people with autoimmune disorders had very high amounts of the enzyme CYP27B1. What this means…is that the body is rapidly converting 25,D into 1,25,D…so that one LOOKS LOW on the 25,D test…but in fact may have hyper-D…over the range amounts of 1,25,D (which for whatever reason they don’t test routinely).
Now, what happens when one has too much 1,25,D…just like if one had too much T3…it has to dock in the receptors…essentially flooding them. For a long time, I thought that the Vitamin D Receptor and the Thyroid Receptor were two different things and that only when 1,25,D was in excess did it plug the Thyroid Receptors…but turns out they are the same receptor. Even worse, and I wish I could speak with those who did the study, but they used the word “displaces” meaning that the 1,25,D “displaces” T3 from the receptor.
I don’t think that taking Vitamin D is of huge consequence to most people…beyond it being an endocrine hormone and that taking it will cause the body to make less. However, I DO think that arbitrarially taking Vitamin D (without the proper testing of the 1,25,D and proving def) for those who 1) are hypothyroid despite normal lab T3 numbers (and who do not have over the range RT3 numbers); or are 2) autoimmune…or are fighting other chronic infections of some nature (bacterial, viral, fungal, or parasitic). Again, the two things that can block or prevent FT3 from docking in the receptor are RT3 or 1,25,D…that will also fill the receptor. So in cases where a person has hypothyroid symptoms…but has normal FT3 numbers…then we need to look for other reasons why the FT3 is not getting into the receptors. RT3 is the most known and first thought of, but 1,25,D should also be thought of…and tested for in those cases.
Baring normal FT3, normal RT3, and normal 1,25,D (which most who are low 25,D have normal 1,25,D numbers)…then the next step is to look at a genetic mutation of the recptor itself…and again, the 23andMe test will show that. So far, as far as I know, NO ONE is treating that…or treating this deeply. So far, the best we get are a decade old hypothesis on adrenals and thyroid and a handful of nutrients (which will make those with the genetic issues much worse). And I know when I first heard of the possible genetic issues…I thought it was something you’d know right away in life…not in middle age…however, much to my surprise, many of us harbor mutations that usually are not an issue…until…until something goes wrong. And if we are one of the unlucky ones (as I am), we will be difficult to treat and not really do well on most convential treatments. In short, the more I learn, the more I realize how infinitely complex it all is.
Per the studies (and esp the reccomendations), I did not care too much about what they were studying…but was infinitely grateful for the functional education on how the receptor works.
Regarding one mineral depletion…I can see it in certain instances. For example, like the D enzyme CYP27B1 which up-regulates Vit D conversion…there are subtle genetic defects that can so up-regulate things that the one can be depleted. That said, I doubt highly that it is iron. Iron for tiredness…and/or for simply being a woman…is like first tier of knowledge. Yes, we do need the building blocks…but, like for myself, I found that the missing nutrient was one we make, taurine. Worse, from the tier of understanding I am at…I can see tiers beyond my understanding…so know enough to say that it is infinitely more complex that how people make it seem.
I’d add the links to the studies, but there are on an old harddrive that I don’t have access too at the moment…but hope that all helps.
I have been Paleo for about 9 months. I initially lost about 30 lbs, and all markers are great…cholesterol, bp etc. But in the past month I have gotten almost balloon like in my mid section from my ribcage to below hip bone, I look pregnant. I can grab a good 5 inches of fat. I have not changed what I eat I was in a size 10 pants and now I cannot button a 14. My arms and legs are trim. What is going on? I am very concerned. This cannot be good.
You might check your cortisol levels. Is your face puffy, too?
I just don’t understand how our systems got so screwed up. Mine was always off, but amiodarone killed my thyroid and rt3. I am on t3 suspended release only 10mcg because it aggravates my afib at a straight dose.
I’ve had low T3 syndrome for well over 12 years (can’t find test previous to that). My FT3 levels hovered between 2.2 and 2.6 (2.0 – 4.2 range). My RT3 was sky high (460 with an upper range of 350. Four years ago I started on this journey to fix it. I’ve tried all of the therapies…..T3-only 3 times (felt like crap on it), Natural Thyroid in high doses, etc. I’ve never had a problem with my liver, that I know. My liver enzymes have always been in the low teens. I don’t drink or otherwise abuse my body. My blood glucose has always been right around 80. Iron, however, was critically low and I had horrid periods. My Ferritin is finally into a relatively normal place (65 on the test 2 weeks ago), but it’s taken 4 years to get it there. I have signs of inflammation, but nobody can find the source.
Anyway, after doing a ton of research on thyroid and how it works, I started taking larger doses of Selenium/Iodine/Zinc/Copper. I had no hard evidence of deficiency (never tested them). After a year of backing down my dose of Erfa (dessicated thyroid) to 2 grains and just sticking there, I finally have textbook perfect thyroid levels and I’m feeling really well. Here are my latest tests (notice the RT3 level and ratio!!!!!):
TSH – 005 (always this level, even when I was horribly hypo)
FT3 – 4.42 (2.0 – 4.2)HIGH
FT4 – 1.1 (0.7 – 1.7)
RT3 – 219 (90 – 350)
RT3/T3 ratio 20.1 !!!!! (It was 6.5 before)
I’m 58 and haven’t had a thyroid gland since 1976. I’ve tried synthetic T4, and a combo of synthetic T4/T3, NDT with extra T3, Erfa, Thyroid-s, Thyro-Gold, What I believe worked the best was concentrating on getting better conversion and NOT overdosing thyroid Every time I take too much, if the dose includes T4, I would convert to too much RT3. I don’t know if I could get these same results by going back to the synthetics, but I don’t think I will try at this point since everything is looking good!
Karen
Hi Karen,
What doses of selenium, iodine, zinc and copper do you take now? I assume you are still on Erfa as well?
Yes, I’m on Erfa, 2 grains.
Selenium – 400mcg
Vit E – 800
Vit D 5000
Vit A – 20,000
Vit K2 10mg
Zinc – 50mg
Copper – 3mg
Selenium requires Vit E in order to be absorbed. And, if you take one oil soluble vitamin, you need to take the others. Some people are high in Copper, so it’s not a good idea to supplement it without knowing. Butt, just generally speaking, you should take copper if you’re taking zinc.
Karen
Thanks Karen. It is ironic since I just recently went to 400 mcg selenium and 800 IU vitamin E and have had some improvement in health. I take 32 mg of zinc and don’t take copper since I get a fair amount in my diet and a hair analysis shows (so far) a healthy balance between the two. I suspect some of this is due to my taking molybdenum for other reasons since molybdenum has an impact on regulating the zinc / copper ratio. I think I need to increase my vitamin D (currently on 2500 IU which might be ok in the summer but not in the winter I wager). I will think about A and vitamin K2 (MK-4 I suspect is what I will use). Thanks again 🙂
David, I’d also consider iodine. It is extremely beneficial to people with autoimmune diseases. In the beginning, you may get a bit of detoxifying effect (feel crappy), but give it a chance because in the end, I think you’ll feel much better. Iodine is needed by so much of your body, not just your thyroid. And, especially the endocrine system!
Karen
Hehe good call Karen. I neglected to mention when things were really bad several years ago I had undetectable levels of iodine in the serum. For about a year now I have been on one Iodoral per day (12.5 mg potassium iodine / iodide). My serum levels are about 60 ug/L on a a scale of 40-92.0 ug/L. I have been debating of recent about upping that dose a bit but at least I have some support now. Thanks again.
P.S. How much iodine do you take? Do you also take B2 and B3 a la Dr Brownstein? Just curious.