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.
Like what you’re reading? Get my free newsletter, recipes, eBooks, product recommendations, and more!
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?
Better supplementation. Fewer supplements.
Close the nutrient gap to feel and perform your best.
A daily stack of supplements designed to meet your most critical needs.
I am 25 years old, been perfectly healthy all my life, no issues with weight gain (actually struggled with keeping weight on!). High metabolism, hearty appetite, tons of energy.
As a teen I started experiencing menstrual-cycle related classic migraines. They became so severe with such terrible auras (prolonged vision spots and extreme nausea) that I was prescribed beta blockers for them in college. The beta blockers worked and the migraines went away. Thyroid was always tested because of my thinness, but as TSH and T4 levels were fine so no follow up was ever done.
I became pregnant and lost the pregnancy at 8wks when I was 21. After that, my cycles became highly irregular and very long. Fell pregnant again at 23, was diagnosed with extremely low progesterone levels at 9wks and took progesterone supplement injections throughout the pregnancy up to third trimester. Other than that, perfectly healthy pregnancy, healthy beautiful baby born with no complications who is now almost 18 months old. Migraines occurred throughout pregnancy since I stopped taking the beta blockers after the loss of my first child.
I started cycling again in April, 9months after my daughter’s birth. I was breastfeeding full time at the time. A few cycles of semi-normalcy, then nearly 4 months of nothing. I weaned my daughter in September and experienced a “breakthrough bleed” (not a true period).
About early August I started feeling incredibly tired. Poor appetite, little zest for life, hair loss, sensitivity to cold, lots of classic thyroid symptoms (although weight gain was not one). Very, very unusual for me. My husband encouraged me to make an appointment with my trusted GYN to see what was up. My GYN who is NaPro trained did a reverse T3 on me and found that my level was at 5-6, despite TSH and T4 being normal (as they had been in the past). In addition, I have low waking basal body temperatures and always have had. My progesterone and other endocrine levels appear healthy and normal, and I am not anaemic.
My doctor is a wonderful physician who wants to try me on some slow-release boosters to see if we can’t boost up T3 function. I feel that migraines, irregular cycling, and my current apathy are all somehow related, as are my low progesterone pregnancy levels. Something – be it autoimmune disorder, thyroid function, what have you – is not quite right. I don’t fit into any category for autoimmune disease that I know of – I’ve always had a very healthy digestive tract and gut, no food allergies, and indeed no foods that really bother my system at all. I’m terribly intrigued to get to the bottom of this and grateful for any input!
Hi Roisin,
So sorry about your lost and grats on the little one. You certainly have some hard-to-pin-point symptoms. You and your dr also seem to be chasing down all the suspects. I agree, something is not right. I suspect that there are growing numbers of patients where things aren’t quite right but who do not fit the classic ills. On the good note, sounds like you do not have an out and out auto-immune disorder yet.
Just some thoughts off the top of my head…high dopamine can make you have no appetite. It is the liver (primarily) that converts T4 to T3…it also balances and regulates our hormones. The liver filters out excess hormones and marks them for excretion. That said, I know of at least one enzyme issue…an enzyme in the GI tract that un-marks estrogen and sends it back into the blood stream…I suspect that there are others.
If you are low in T3 (the usable hormone), you may benefit by taking some…however, I say that with the caveat that if your levels stay low despite taking some – you probably should stop. There are two causes of low…one is you are failing to make enough (which would raise levels if you took)…the other is that the body set the levels low for some reason (in which levels will stay low)…if this is the case, your thyroid will simply make less to compensate for what you are taking and that is not a good thing esp in the long run.
My general advice to anyone with symptoms that dont fit classic dx’s is to learn the entire system for your particular things. There is a lot of false info on the internet…info that sounds really good and logical, and even that many drs use, but is still false on its face (ie the falsely believed connection between adrenal function and thyroid function is not biologically connected) so learning the biological pathway for your particulars will go long ways in helping you weed out false info.
Lastly, although I am not sure how it fits your particular profile, you may want to look into genetics. By this I do not mean like congential genetic defect type stuff, but your own gene code for making the various enzymes you need to do all the various functions in your body. Two issues can arise…one is, as we copy our cells (including DNA), each copy is less perfect than the original…so defects crop up. In out and out auto-immunes, one’s genes change…at which point it is unlikely to be fixable any longer…so you are not there yet which is great. The other is…you may have one of two genes mutated and was never a problem before because the good gene prevailed…but age and issues can interupt that and cause it to no longer function well. It is a fairly new subject in the medical world…and most of the gene function is still unknown…but for what they do know it is highly helpful and interesting. One of the well known genes, MTHFR, the gene that instructs the making of the MTHFR enzyme, which is the enzyme that adds a methyle group onto folate…(which is just one of millions), is readily searchable and you will find lots of information.
My two bits on the subject are this…23andMe.com has the test for $99 and you don’t need a dr to order it. After that, you can search the raw data yourself or run it through software like Genetic Genie and get your methylation report. There is a super complicated chart of the methyle cycle (there are other cycles as well) at Heart Fixer dot com. BUT…the current hypothesis in the field is that if you have a defect (ie MTHFR) you simply take what the body would make after it (ie methylated-folate), however, like 8 of those things that the so-called experts in the field say to take made me very sick. So what I did was took the report and had my dr test everything that it said it affected to see what was and what was not being affectd. Lo and behold I found some very interesting stuff. I don’t make the amino acid Taurine very well…and I don’t make adrenaline well. None of the experts say to take taurine…but I do and cannot sing the praises of what it has done in my life enough. For me this approach was just logical. Yours would, of course, be different…but is about the most personalized way to go into the medical arena and the quickest way to get your true answers.
Best of luck,
Faith
Thank you Faith, great input! Something I have always noticed about myself is my ability to metabolise things very speedily, ie alcohol. I am adopted and my birthmom was on a lot of drugs. She got clean when I was about 4 months old in the womb, but I was still expected to to born with some issues. I have never had any thank God and have always been very healthy, but I’m wondering if maybe this could be related. Drugs particularly alcohol can affect liver and other organ development. I will bring your info up with my dr and see what she says. Thanks again!
Interestingly, how quick or slow you metabolize something is genetic. On of the fun aspects of 23and<e.com is that it tells you if you metabolize coffee or cigarettes faster too. It also shows one's ability to metabolize certain drugs which is nice to know (ie warfrin whether you need more or less than average people). As someone who has been chronically sick for awhile with symptoms that dont scream any one thing, I found the genetic testing to be the most effective method of getting to the bottom of things. As I mentioned, after the testing I ran it through the free software site, Genetic Genie…and then had my dr test all the things it said it affected (mostly amino acid tests)…that is when I yielded the missing nutrient taurine which supplementing has been such a huge help. So has become my advice when drs try the obvious but still just don't know.
Best of luck,
Faith
The 23andme test has been a great help to our family as well. However, after taking the GeneticGenie reports to our naturopath, he suggested running our raw results through the MTHFRsupport software ($20 via PayPal), which yielded a list of 5 times the mutations that GeneticGenie had.
We’ve found the Genova Diagnostics NutrEval FMV test to be the best for trapping what problems the mutations are causing, and both the Heartfixer site and Amy Yasko’s Pathways to Autism ebook have been helpful in understanding what our naturopath is doing to help, and has helped us ask questions that have improved our treatment and outcomes.
We all have various thyroid issues as well – I have the famous, but apparently, non-existent Wilson’s syndrome, and have had extremely good results with generic Cytomel, after learning to avoid the ones with the CORNSTARCH and LACTOSE fillers, to which I am allergic, in addition to gluten. And so, I have appreciated reading through all the comments above – thanks all.
Here are a few other ideas – I don’t know if any of them would fit with your situation, but just in case –
1. If not already done, consider asking your doctor about having your ferritin and C-reactive protein checked. If both are low, you may be low in iron. If both are up, you may have something inflammatory going on (for example, some sort of autoimmune thing.) If the ferritin is up and the CRP is down, then it might be worth checking for hemachromatosis.
2. Is your pituitary okay? (Any change in your headaches or are they exactly the same migraines as always?)
3. Does going right off gluten make any difference? There’s such a thing as “silent celiac” where people don’t have gut symptoms but test positive for celiac and can have other symptoms, such as fatigue, that get better when they stop eating gluten – and then there’s non-celiac gluten intolerance where people don’t test positive on any of the tests for celiac disease but feel better not eating gluten. Caveat: you have to be eating gluten for celiac to show with antibody or biopsy tests. (It doesn’t matter for the genetic tests.)
Thank you Gillian!
1. I have had iron levels checked (anaemia is the first things drs think when they see how thin I am and hear “tired”) and they have always been great, excepting during pregnancy which I think is fairly normal. I don’t know my family history but I will talk to my dr about the possibility of hemachromatosis, that is definitely a possibility.
2. My migraines are the same textbook classic migraines they have always been. Start off with gradual “aura” vision loss, accompanied by nausea, cold hands/feet, followed by pounding pain on one side of my head or the other, depending. They usually come in clusters of about 2-3, spaced over a few days.
3. I don’t eat very much gluten and have gone days at a time without eating any, so I’d be really surprised were that the issue. I never notice much of a difference to my system with regards to what I eat. The fatigue, along with hair loss, sensitivity to cold, insomnia, loss of appetite are all relatively new symptoms to me, all starting right around early August. Prior to that everything was fine other than my migraines, the irregular and long menstrual cycles, and my pregnancy progesterone deficiency.
Despite all that, It may be worth going without gluten for a month and seeing how you feel and then introducing it after a month. Confession: I’ve never attempted this with dairy. For me it’s easy to skip gluten but going without the dairy stuff is another matter altogether…plant food in the hot drinks just doesn’t cut it. Luckily we have A2 milk available here at only twice the price!
When I was in my later child-bearing years I had PMS migraines. I had miscarriages which were preceded by migraines. Later I noticed that the migraines occurred when I was not getting what I needed to build strong bones. By then I had osteopenia and was taking medication for it, but would get a migraine if I missed a dose or if I failed to get enough calcium, vitamin D, or the micronutrient Manganese which has been associated with osteoporosis.
I had a book called “Menopause” which talked about the need for extra natural progesterone during menopause being a precurser to various estrogens and other hormones. It also warned against the various progestins that are created by drug companies that differ from the natural version so they can patent it, but fail to work identically in the body. It also mentioned that progesterone helps the thyroid function better. I also know that progesterone counter balances estrogen and estrogen is something that binds to the thyroid hormones causing a smaller amount of total T3 to be left in the biologically active “free” state.
I was shocked to read this article. I’ve been on time-released cytomel for low T3 for 10 years. 2 years ago I had an unexplained cardiac event, an episode of ventricular tachycardia where my heart stopped and I collapsed, which luckily I survived. There was never an explanation for this that satisfied me until I read these articles. I printed them out for my oh-so-casual doctor who put me on this med without even repeating the low lab results. Instead she’s tried to refer me to cardiologists for a one-time incident.
I am on Liothyronine (generic Cytomel) one 5 mcg tablet per day (not time-released) which I take in a divided dose (1/2 tablet with breakfast and the other in the early afternoon. I couldn’t have taken that much at first, probably because the reason I had trouble in the first place is that I have autoimmune antibodies for both Graves’ Disease and Hashimoto’s Thyroiditis, so when I took 1/2 tablet for the first time taking the L-T3 it was a huge jolt to my system. In about 3.5 hours my heart rate went from about 60 to 94. I knew the hormone could do that, since I had the fast pulse before I was treated for GD, and having read as much as I can from as reliable sources as I could find.
It was after having been treated with Methimazole (MMI), an Anti Thyroid Drug, and becoming “euthyroid” but with my Free T3 levels near the bottom of the normal range, either slightly above it or slightly below it, that I asked my Endocrinologist for thyroid supplementation. I was in misery, but he made one excuse after another for not treating me. He was the second Endo I had seen, and he told me that Endo #1 had made me hypothyroid, and he would be careful not to do that by starting with a low dose of MMI and building up from there. It was still very much a struggle being treated with the ATD, but worse when the GD was resolving and I could no longer decrease my dose. I was desperate to get more help and went to Endo #3 for a second opinion. She was the one who clarified to me that I had both types of antibodies present, but she was unwilling to prescribe even the smallest dose of Levothyroxine because it might make me hyperthyroid again. She was out of state and an eight hour drive away, but she said she would see me after a year, or sooner if my symptoms or labs showed a need for more immediate treatment, and wrote a letter that I could show my PCP to have him run the labs.
I tried to return to Endo #2, but he dismissed me as his patient because I had gone elsewhere for a second opinion. Partly because of that, my PCP was willing to manage my thyroid. I showed him the letter, telling him it made me feel like I was walking a tightrope between the GD and HT, but I didn’t think any doctor could walk it for me, and I just wanted the means to do it myself. He agreed, and we discussed treatment options.
I wanted the L-T3 treatment because my labs showed I was lowest in T3 and because it seemed like it would be easier to “walk the tightrope” if I had immediate feedback as to whether I was taking too much or not enough, and I knew that L-T3 is both fast acting and with a short half-life of about 24 hours. I planned on taking my blood pressure every morning before breakfast and especially watching my heart rate because I thought that would be the most dangerous sign if I was getting too much liothyronine.
After the first jolt of L-T3, which actually made me feel like a new person, I skipped a day and went down to a quarter pill the next day. It also seemed like too much and I skipped more days, becoming rather haphazard with taking the med. When I saw the doctor again after 6 weeks and new labs, he helped me determine a more reasonable dosing schedule, so I would start out with an eighth pill daily for a week and increase the dose weekly by eighth tablets until it seemed too high and I would return to the next lower level. In actuality, I needed longer than a week to stabilize on each size dose, at first. Later, I could manage a quarter-pill increment, and after only a few days on the previous level.
At my next doctor appointment at the end of September, he prescribed 50 mcg Levothyroxine for me to take along with a whole L-T3 pill daily to more fully stabilize my hormones. I felt good on that level for a while, then added another quarter pill in the afternoon. That seemed to be too much so I shifted to the 1/2 pills morning and afternoon.
I believe all this slow back and forth adjustment is necessary and has actually helped the GD attack subside. I suspect that it has a lot to do with how I am able to better tolerate the dose I need and stay in the normal range with my labs.
Fern, what you are experiencing with endocrinologists is common. I can’t figure out how they can practice the way they do. Hiding T3 results from the patient is also routine, unless you demand to see it. Then come the excuses when you start asking about it.
Your on the right track but I would urge you to find a doctor that properly prescribes T3. Any doctor that would have you take 1 non-compounded pill per day, when the pill only has a known active working time of about 3hrs is not good. You need to be on a steady 24hr T3 dosage, only possible by compounding. I think you are currently on a roller coaster with your current dosage and that’s why you can’t get the true benefit of T3.
Thank you for your comment. Sorry, my roller-coaster doesn’t allow me to get straightened out.
I was feeling fairly well until I had my blood test toward the end of November. My free T’s were in the normal range but my TSH was zero (0.009), so my doctor sent me to another endocrinologist. He wanted me to quit the Cytomel cold turkey, and I had already lowered it, and the levothyroxine a little before I even saw my doctor after the blood test. This Endo #4 tested me at the end of January, which showed I was at 0.17 TSH, I think. Still he wanted me to lower my Cytomel to 2.5 mcg and I have felt awful.
I was on 62.5 Synthroid and 15 Cytomel (which may have been a bit high?). Then TSH increased to 3.9 last month and MD increased Synthroid to 75. Cytomel remained the same. I was hypo at that time. For the past couple of weeks and in particular for the past week, I started feeling extra exhausted but like I were “drugged”. I reduced Cytomel to 10, 2x per day just following my gut. I watched closely this weekend and it became clear by Saturday afternoon that within 1 hour of taking both morning and afternoon Cytomel dose, I was hit with this drugged feeling and overcome with exhaustion. Today I did not take either Cytomel dose and felt much better. Wondering if I could have Reverse T3 Dominance which I am just researching now – and it causes hypo symptoms. Is this the same think you are talking about here? Not sure what to do – decrease T4? stay off Cytomel? Not sure if anyone reads these posts. Thank you.
Hi Cat,
Your symptoms sound very much like mine…feeling drugged and sleepy when on too much. Ironically, it is extremely similar to the feelings of too little thyroid as well (or at least we use the same words to describe both).
Taking T3 (Cytomel) would by-pass the RT3 issue (we make RT3 from T4)…so should make you feel better rather than worse. For what it’s worth, I get the same feeling after taking most T4 meds including desicated thyroid…except from one, Tirosint. Tirosint is a relatively new T4 and has no fillers. Many of the other manufacturers use fillers that may be a problem and some, like Armor, often use fillers that interfer with thyroid function (you’d think they’d know better, but such is the world we live in).
Two thoughts…one is that it is possible that your body has set your thyroid level needs lower. There are many reasons that the body does this (age, lack of sufficient food, illness…even low-grade, barely noticable illness). If so, then your levels might look low…but really be fine for you.
The other is the myriad of thyroid receptor issues…RT3 being one of them. Too much T4 can cause increased conversion to RT3 to get it out of the way…body set point lowered will increase RT3 conversion (which by the way takes place in the liver). As you have read, too much RT3 docks in the receptors and will prevent T3 from getting in. The classic signs of this are normal T4 and normal T3 levels (high (over the range) RT3 levels) and high TSH (the pituitary requesting more thyroid hormone).
Another possibility, like RT3, is the active form of Vitamin D (which is another endocrine hormone)…Vitamin D Receptors and Thyroid Receptors are one and the same. There are numerous conditions that can make the endo hormone known as Vitamin D an issue…(genetic, illness, or taking Vitamin D). The Vitamin D we take (whether D2 or D3) is not-active (similar to T4) and must be converted by the body into the active-usable form (like T3). Unfortunately, the tests that they run for Vit D levels is the 25-D test and this ONLY tests the non-active form (like T4). The test you want to run WITH the 25-D test is the 1,25-D test (the active form, like T3). Those who have bacterial infections (even very low grade and barely noticable) or a genetic predisposition to make TOO MUCH of an enzyme called CYP27B1 that over-converts 25-D into 1,25-D…leaving a person to ALWAYS look low on the 25-D test but, in fact, be too high in 1,25-D. The problem with this is the shared receptor…and that 1,25-D (the only usable form) will “displace” T3 out of the receptors. So, if not RT3 it might be 1,25-D.
In addition, there can be genetic mutations to the thyroid receptor itself…forwhich neither I nor the internet can help you much there (yet). However, you can (if you want) do the 23andMe.com genetic testing…and then search the raw data for the thyroid receptors (THRA and THRB) to check for mutations.
That said, your symptoms sound exactly like how I experience too much thyroid hormone (I don’t have a thyroid so am totally dependent on what I take). The only difference I have found over the years between too low and too high is I get weepy and my pain levels raise to unbarable levels when I am too low. And yes, it sucks…that drugged feeling is really yukky in my humble opinion. The challenging part is that our needs for thyroid hormone fluctuate…the only blessing in my case is that I take T3 only so I take multiple times a day and can adjust dose by dose. Sorry you are going through it, good luck on your search.
Hi Faith! Thank you so much for your response. After increase of T4 from 62.5 to 75 and decreasing Cytomel from 15 to 10 my labs moved from/to: TSH 3.9 to 3.5. T3 1.9 to 1.9 (R1.9-3.9) and T3 0.8 to 1.0 (R 0.7 to 1.8) which makes sense with a bit more T4. I was off Cytomel for 2 1/2 weeks and felt better then ever (but had also stopped caeffine coffee the week before). MD put me back on Cytomel but after 10 days I stopped it again. “Drugged” in the sense of “sedated” is the reaction. It is crazy cuz have posted on several thryoid groups and not one person related. My system is sooo sensitive. Wonder if I should try Tirosint?. But do I need to worry about T3 then? Armour has fillers too as you said. I go back to have new labs Dec 2 and that will be after being off Cytomel completely for 3+ weeks. Will also ask for the 2nd Vit D test as I was deficient and take Vit D3 supp. Thank you!! Cat
Hi Cat,
I wish I knew what caused the drugged feeling. Mostly just chalk it up to being on too much at the moment and cut myself back (like 1 or 2 doses).
That said, there are times that I def feel like I am not getting enough…like it is in my blood but I am not using it. This I chalk up to the genetic stuff that i have just been finding out. For example, I have many defects in genetic instructions for my thyroid receptor. Not sure what that means exactly, but it reasonably makes sense that this might be why sometimes I don’t seem to make use of enough.
The liver is very involved in clearing the excess thyroid hormone. I have low-grade liver stuff (recent in the last 6 months). Part of being sick I guess. That said, doctor today looking at my labs from my genetic stuff made the connection of my not making enough glutathione…and glutathione, she says (not sure about this one yet), is a detoxifier or detoxifying agent of the liver. My own drugged like feeling when on too much T3 leads me to wonder if the feeling is not some kind of protective device of the body?? Like maybe the excess gets tagged for deletion, but instead re-circulates, and that tagged piece makes for the sick feeling???
Anyways, I don’t know…but you are so not alone in this.
Hi Faith or anyone out there in the blogosphere. Picking your brains again You referred in the above post to a couple of genes that can affect Vit D levels. Mine’s always been on the low side (13 whateveritis). I browsed the 23andme raw data as advised and came up with 1 heterogenous mutation out of about 20 SNP’s for theCYP27B1 so I don’t think that’s too significant. However for the THRA gene I had 4 out of 8 heterozygous SNP mutations. For the THRB gene I had approx 65 of the above out of 240 SNP’s .
I read a few of the eye glazing articles on Gene Scholar. Do you know how significant these proportions of mutations are? Just realized I haven’t analyzed the data to see if I have homozygous mutations. That’s going to take forever… I guess like the methylation pathway mutations, some of these mutations are more serious than others.
I’ve got subclinical autoimmune thyroiditis and before I commenced thyroid hormone replacement 2 months ago, the T4 and T3 levels were on the low side with the TSH around 4.5 and positive but fluctationg antibodies. I’ve been diagnosed as being severely deficient in iodine but am eshewing it as a trial coincided with my antibody levels rising despite taking 3 brazil nuts/day along with zinc and magnesium.
Unfortunately here in New Zealand, I can’t find a way around the fact that a RT3 level has to be sent off to Australia to be measured and I don’t see any doctor here ordering a 1,25D level as they cost around $400.
On STTM, I saw a calcuation for RT3 consisting of subtracting the FT3 from the Total T3 level but I can’t see how that would be possible as Total is bound and free T3 I assume, so that would only give the level of bound T3, not RT3 surely? Any thoughts on this?
Finally, on 25mcg Synthroid and 10mcg SR T3 daitly, the thyroid hormone levels came back virtually unchanged but the TSH dropped down to 1.82 so at least it appears I’m being compliant to the doc! I take them half an hour before breakfast with a glass of water.
Hi Honora
*Waves all the way to New Zealand*
First let me acknowledge that you are way ahead of most on these subjects.
The Vit D issue is that they test the inactive form (sort of like testing T4), but as you say, it is costly and inconvenient to get the 1,25 D test run…so you may just have to speculate. I don’t see a major issue in supplementing unless you have a bacterial infection (like Lyme) or an autoimmune condition…in which case you would want to consider your choices maybe more carefully.
Genetic Genie runs a free “methylation report” from the raw 23andMe data. However, what I have learned is that all the information being pulled is from studies…and as such is not complete. For example, the MTHFR gene that everyone was all on about last year…instructs the making of the enzyme that adds a methyl group onto folate. Many had a double mutation. That said, you’d think (just logically speaking) that by mid-age they’d either be dead or some other enzyme does the same job. At least that is what I figured. My doctor in this likes to do what all the so-called experts say, but after many failed trials, I asked to just test the things the Genetic Genie report said were affected…to see what, if anything, was really being affected. This was the single greatest thing that yielded true answers to what was going on. However, the side effect of which is that I am much more skeptical of what the so-called experts hypothesize.
Like you, I see a number of single mutations on my report as well…and have yet to figure out what constitutes a double mutation on the others…so wish I had more information for you there. Hear you on the eye glazing articles. What I have taken to doing is reading studies only so far as they explain how we make or unmake things…in other words, as to how things actually work. What I have learned is that the “receptors” are in essence one receptor that does multiple functions. I do not know of anyone or anything that fixes receptor issue though.
Regarding the RT3, I don’t see any merit in the calculations that were espoused by some sites…the body will make some, and will make more or less depending on the situation. For example, when one is sick, one makes more. All of which are normal and self-correcting. The issue comes in when one is chronically sick, or sick with some low-grade issue that they may not even know about and have RT3 over the range all the time. People are refuting it, however, the function of RT3 is to regulate our system…thus docks in the receptors in the same way T3 does…and can cause a situation where blood levels or T4 and T3 look normal but are unable to be used at the level one needs and thus one is still hypo. High levels of RT3 would be beneficial to those who are hyperthyroid, I would think.
That your levels come back unchanged, my guess is that your body (namely the hypothalamus/pituitary) has set your levels at this level. In the presence of too much hormone, the liver sweeps the excess and marks for excretion in order to keep the status quo. Which suggests to me that the issue is not in your thyroid per se.
If it were me, I would question the iodine dx…assuming that you are still making thyroid hormone (which would be the true sign of low iodine). The iodine one takes is not bioavailable, even in the brazil nuts…and must be converted by the thyroid into an iodine that is bioavailable. Incidentially, the thyroid stores iodine. T4 is one thyroid molecule with 4 iodine molecules. The liver (primarily) cleaves a single iodine off to make T3…that cleaved bioavailable iodine is then reused. You might look into the testing methods and see what you can find. Along this long journey of health, I have found much to my dismay, that lab work is so hopelessly flawed that it is any wonder we (and our doctors) could know anything. Also, if you are without a thyroid…and/or taking thyroid hormone…you are already getting a full supply of bioavailable iodine (as T4 and T3 mean one thyroid and 4 or 3 iodine respectively).
Also, the jaunt into genetics has taught me that everything we previously thought we knew about supplements is outdated and even potentially dangerous. Even the so-called genetic experts who has espoused taking methylated-folate often really hurt patients how have issues with methyl groups. What I have learned is to be extremely cautious and to trust my body.
Ok, hopefully this helps. Hang in there,
Faith
Thanks for the reply, Faith and the nice stuff you wrote. I ran the methylation report on genetic genie. Like most people on the planet i had a mutation, in my case a heterogenous mutation on the 1298, luckily no mutations for the COMT and only 1 heterogenous mutation for the CBS genes. My interpretation of this means it would probably be OK to trial methylated forms of Vit B12 and folate and see how I go. My homocysteine level wasn’t flash at 11 in a range from 5 to 15 though the biochemist I pester at work keeps telling me that if things are in the normal range, don’t be concerned…
Most of the MTHFR, MTR and MTRR, VDR Bsm and VDR Taq are compound heterogenous too except for that A664A thank goodness. It all seems to point to issues with methylcobalamin, mine’s in the grey zone at 250, and folate. Mine’s OK but it’s only the plasma measurement, not the red cell folate.
I suppose I could do as you have recommended and just get the specific levels measured e.g. ammonia and some neurotransmitters and maybe heavy metal toxicity e.g. aluminium but I’d need to track down a pretty special doctor to agree to all this. I think it would be a lot easier to trial the Vit B’s first.
Unfortunately, Methyl-Life don’t ship to NZ so I’ll have to research and track down an alternative brand. BTW, I’ve forgotten what the T and G on 23andme are substituting for. Is it A and C, or C and A? I’m guessing C and A because I’ve got the wild form for the A664A and they say I have no mutations there with my alleles are GG.
I was told I have a thyroid that was not functioning and 2 doctors were surprised I was not in a coma because my T3 & T4 did not exist. My symptoms were so severe (yet classic hypothyroidism) that in a 12 year period of time I was mistreated and even put on lithium. With lithium in my system…I believed I was crazy. Here I was being told I had hypothyroidism not bipolar. Happy days again. The doctor started me on Synthroid 75 and within a few months I was taking Synthroid 150 and still my symptoms were present with little improvement. At this point I added Cytomel 25. Wow, I was feeling more myself again. My symptoms were now tolerable and I could cook dinner and eat without having to take a nap. Now some 5 plus years later my symptoms are slowly rearing their ugly heads again. I know what this is so I go see a doctor that decides to cut the Cytomel 25. (I have moved to a different state and due to insurance had to find a new doctor). Within 24 hours I knew I was going to the place I swore I would never go to again. Promising my doctor to be a quenie pig I continued not to use Cytomel for almost 3 weeks. The downhill sprial was horrible. I started researching again I put myself back on the Cytomel and this time I took half in morning and half in late afternoon. Within 12 hours I felt the headache ease and my brain now had glasses on and could see thru the fog again. Never again I said. So now I recently saw a endo dr. who is upping the Synthroid to 200 and wants to discontinue the Cytomel. After many tears were spilled at the dr. appt. I agreed. 10/5/13 will be my first day. The dr. assures me I will feel better and will “bridge any gaps” if necessary. I’m so confused about all the research and I have absolutely no trust in any doctor. It’s all an “EDUCATED GUESS” for them with little regard to how I feel. When this all began and I was told I would have to take pills for the rest of my life I asked the doctor about diets, supplements or anything else before parmacutical treatment. I was told there was nothing. I now know that was untrue as well. After the few weeks of stopping and restarting Cytomel, I am scared I will go down again and not be able to get back on Cytomel.
Did these doctors have any excuse for wanting to take you off the Cytomel? Why did you agree? I know it is hard to find a doctor that will treat you right, but maybe it is worth it.
Even in the worst case scenario with high blood pressure, fast heart rate, and hyperthyroid results on the blood test, I would expect, possibly even demand to only reduce the dose, not go off of it entirely in one fell swoop.
I feel like I volunteered to be a guinea pig in the positive direction. Treated first with the Cytomel 2.5 (half of a 5mcg tablet) and finally building up from 1/8 tablet to a whole 5 mcg last week and adding Levo-thyroxine 50 just today. It seems exactly right to me so far.
Also, Teresa, did you consider that taking the Cytomel late in the afternoon, your TSH may be more suppressed than is good for a clear picture of what your thyroid is really doing? (I guess you’re really saying your thyroid isn’t doing a single thing, anyway, right?)
Teresa, omgosh my heart goes out to you with this.
Beyond what everyone else would say, two things you might consider. One is that (unlike what they say on the internet) it is (primarily) your liver that converts T4 to usable T3…and that your failure to convert enough suggests a possible issue with the enzyme that does the converting. To that end, it is our genes that instruct the making of the enzymes…and they are not impossible (confusing, but not impossible) to figure out. For this I would suggest you consider the 23andMe genetic test…and then search the raw data for the gene/enzyme that does the converting.
The other possibility to consider, and you did not mention if you had tested this, is that the other possibility that the T4 alone isn’t working is RT3. Sometimes the liver converts T4 to RT3 more that T3…and the RT3 will dock in the thyroid receptors blocking them from T3.
As well, you could have genetic issues with your thyroid receptors. This would cause (I believe) the fluctuating times that it feels like you are not getting enough thyroid. I go through this periodically and get very hypo. At those times it doesn’t matter how much I take.
By the same tolken, our needs for T3 fluctuate.
And you are absolutely right…it is all educated guesses…but try to take heart that even though relatively little is known about the human body, that they are trying to do the best that they can with what little they know. And yes, it is often times wrong. This can be very hard (I know) because we as patients NEED them to know.
And I am sorry that Synthroid has really cornered the market on the treatment of thyroid. In an ideal world, taking T4 only does seem like the smartest and most logical thing to do…unless you are not converting it to T3 (or to too much RT3).
The last thing, the thyroid receptor and vitamin d receptor are the same…and in certain conditions (genetic, illness, etc) people make too much of the enzyme that converts the vitamin d we take (think of it like T4) to the vitamin d we use (like T3)…so that we become hyper-d. It is called the “Vitamin D Reversal Pattern”…the test they use (like T4) will look low…and this is the test they use for EVERYONE…while the vitamin d we use (which they DO NOT TEST) is too high. The problem with the vitamin d we use being too high is that it floods the receptors and is said (in the studies) to “displace” the T3 from the recptors. So….if you are taking d, you may want ti get BOTH d tests done…the 25-D (that they ALWAYS test) and the 1,25-D (that they NEVER test)…so that you can see whether too much vitamin d might be causing your current issue.
Hope that helps. Try not to beat yourself up…there is only a small handful of drs that will give you T3 (your current one obviously not one). Don’t worry, even the Mayo Clinic is against T3. Hang in there…and demand that they run the RT3 test with your other thyroid tests as they monitor you. And, if you can, get the dual D tests as well. If it is either one of those it would be the simplest solution (although, even with high RT3 few drs will consent to give you T3…and my RT3 levels were over 180 points above range and myself collapsing…and still it is a battle). My best suggestion is an integrative doctor if you can find one. Best of luck.
Hi-
Sorry to jump in so late on this thread! I was wondering if anyone else has experienced rapid weight gain on T3 medication? I see an integrative physician and through testing found I had borderline low t3 and t4, and my TSH was not elevated. I was also feeling very ill, dealing with gallbladder problems (I am gluten free), lots of nausea so I was glad to try something that might help…I began to feel better on the t3 and less nauseated overall, however I quickly gained 10 pounds, all in my midsection. I am relatively thin (went from 130 lbs to 140 lbs and I’m 5’7”) but the scale is continuing to creep upwards. I don’t think I am eating that much more than before so this is puzzling to me. Has this happened to anyone else?
Thanks!
Gina
Hi Gina,
YES! I have experienced weight gain from T3. One of the little known (and subsequently little talked about) facts of too much thyroid hormone is a paradoxial weight gain. My guess, since none of my doctors shared the biological pathway of this mechanism, is that this is a way of the body clearing the excess hormone.
Here is the challenging part…the TSH is the pituitary’s request for thyroid hormone. If all things are working correctly in the body…esp the pituitary and hypothalamus…this really IS the best read on whether more hormone is needed. And it is helpful to know that there are many reasons why one’s T3 and T4 may be on the slightly low side that have nothing whatsoever to do with the thyroid…for example, your gall bladder issues. When one is sick with something else…it is normal for the body to set the thyroid levels lower. Even though much of the general public dislikes the fact that biologically our bodies are set at when one has an illness they need to slow down and rest in order to heal…but this is the way our bodies are wired nonetheless…so when you are ill (esp low grade chronic illnesses) the body down-regulates itself…often by lowering thyroid levels. This doesn’t mean that it needs or even should be supplemented, however, (imho) suggests that the TSH should be very closely monitored more frequently.
That said, there are other reasons for weight gain (and inability to lose) than the thyroid as well…such as high norepinephrine levels or def in taurine.
The question is…on the T3, as you were feeling better, did you happen to get thyroid labs done? If so, did your TSH go down or stay the same (or did it go up)? Did your T3 levels change? This would be an important ‘tell’ in regards to what is actually going on. Also, did you have or were you recovering from a cold when you took the original thyroid labs?
In a normally functioning body (even a chronically ill one), when the hypothalamus has set your thyroid levels low…your levels will stay low even though you are taking the T3. It will do this by producing less…and by clearing the execess with your liver…in order to keep the status quo that it set. IF that is what is happening with you…if your levels are still low despite taking thyroid rx…then it is not your thyroid…but rather something else.
As someone who also has gut issues…and occassionally inflammed gall bladder…and the whole nine yards…it sounds to me more like the fluctuating ways of the gut for all of the above…just my thought. When the pancreas starts failing it can kick out excess insulin…which the body clears by making fat (why many diabetics are overweight). And yes, that will cause extremely rapid weight gain (and loss). What the drs told me when they ultrasounded my gall bladder in response to my question about how to not-develop gall stones, was to eat less meat…fwiw. High dopamine levels will cause you not to feel hungry…and even nauseated. For me, I feel repulsed by food when my gut is acting up. And I know, from my own experience, that the weight gain I get is NOT from eating food since I struggle to get my caloric intake up to 500 cal a day. The times I have been on too much T3 (I don’t have a thyroid), I gained weight…it was the only symptom that it was too high because all the other symptoms were the exact same as too low T3. Also, too high will elevate your Alkaline Phosphatase…which you may also want to check…means your bones are starting to demineralize (side effect of too much T3…and one’s liver not-clearing it).
Also…are you on Armour or other dried thyroid gland??? Many people feel ill on thyroid from the fillers…and some of the companies use fillers that supress thyroid function.
Anyways, hope that helps provide some insight. Please feel free to ask.
Hi-
SO nice to know I’m not the only one! Since this has been happening to me, I’ve been scouring the internet for answers and stumbled upon this website. I really appreciate your feedback. I mentioned the steady weight gain to my Dr., and she seemed puzzled and had no advice. I had assumed that with the T3 medicine (It’s slow release T3, 10mcg) that my energy levels would improve and I would feel stronger and more like my old self, when I had almost too much energy. Initially, I did feel much better, even though I kept gaining weight while eating the same, or maybe even less (I’m gluten free and almost 100% primal/paleo.) She tested me once after I started the meds and I went from 2.3 to 2.5 as far as my T3. It’s only been 4 months since I started the medicine. Also, she prescribed Cerefolin at the same time because she found that I had a MTHFR genetic defect. So I don’t really know which one was making me feel somewhat better, and fatter 😉
So I think you are right about the pituitary/hypothalamus being off and not really the thyroid. Also, I didn’t have a cold or anything when tested, and my thyroid numbers have been about the same (borderline lowish) for the last two years; mainly I thought I’d go ahead and try the medicine because I had been feeling so weak as of lately, etc.
The gallbladder issue has been a steady problem for about 3 years, and I can control it as long as I avoid gluten and most grains in general. Honestly, I’ve had horrible stomach aches for 15 years and ignored it until I started having IBS type symptoms. I didn’t want to have my gallbladder removed because all of my tests and ultrasounds of the GB were always normal, although it had gotten bad enough that I developed pancreatitis once, and even then all of my blood work was fine so I never had to be hospitalized thank goodness! The GI Dr’s would not listen when I told them I thought it was gluten that was making me ill. I had an upper GI, and the small intestine biopsy showed lymphocytosis (intraepithelial), and then my 23andme.com test showed I had a trait towards being celiac. So that convinced me 100%, no gluten ever again.
My father died of pancreatic cancer at a young age, with no known risk factors. I’m trying to get to the bottom of all of this so I can be extra careful in case something serious is in it’s early stages, especially since I have a 2 year old little boy and I want to be here for him!
The only other tests that I’ve had that were abnormal were a positive ANA (only 1:80), and I also found out that I have several other MTHFR polymorphisms (besides the one my Dr. found) from my recent genetic test.
I decided to stop taking the slow release T3 about 3 days ago; now I have a cold/sore throat but may be a coincidence. It would be nice to get to the bottom of this, as to whether I have an autoimmune problem, or is it just the celiac issue, or something else!? I have read Dr Amy Yasko’s book about methylation defects and may use that approach to try and heal my “gut”.
Thanks for your input and advice!
I am also of the opinion that having sufficient thyroid hormones in your system, especially T3, can help keep us from catching colds, etc. and help the body resist secondary infections.
Also, the reason I was tested for TSH levels after age 52 was because my ANA tests came back 1:1280 and I was diagnosed with Lupus. My ANA came back into the normal range, though, before I was diagnosed with Graves’ Disease at age 60.
Hi Gina,
I was just wondering if you have been checked for Helicobacter pylori (H. pylori) infection? H. pylori causes a stomach infection that results in stomach aches (especially when hungry) and can predispose to food intolerances because the H. pylori causes holes in the stomach lining that let whole, undigested food molecules get through into the blood stream.
Depending on your genetic tendencies, undigested food molecules in the bloodstream can result in the development of food intolerance causing diarrhea or even autoimmune conditions.
For example, gluten is a food molecule that some people have found to bring on autoimmune conditions and/or make them worse. A google search on
gluten “palindromic arthritis” OR “rheumatoid arthritis” OR lupus
shows that for some people, cutting out gluten results in improvement in symptoms of PA, RA, or lupus. – here’s an example of one person with a diagnosis of lupus – http://kriscarr.com/blog/the-lupus-and-gluten-connection/ .
Similarly, a search on
gluten thyroid disease
finds postings from people who have found that cutting out gluten results in improvement in their autoimmune thyroid condition – e.g., http://blog.cleanprogram.com/a-gluten-free-girl/ . These observations are supported by this review ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695884/ ) indicating that H. pylori may be linked to the development of thyroid disease.
H. pylori is also linked to severe nausea of pregnancy, stomach ulcers, stomach cancer, reduced absorption of B12 and iron, and more – including, apparently, reducing the absorption of thyroid hormone ( http://www.jgld.ro/2013/3/4.pdf ).
In case any of this is helpful –
Hi-
Thanks for the links; I will check them out. I had an upper GI, during which they tested for H. Pylori and it was negative…I was surprised, actually! I had just assumed that I would have it!
I’ve known for about 4 years that gluten was not my friend, however it took a long time to convince myself because my Dr’s would always tell me it was unlikely to be causing my symptoms. Luckily I listened to my instincts!
Gina
Hi Gina,
If the test done for H. pylori was a biopsy or a urea breath test, both can be false negative when you have an H. pylori infection but something is suppressing the activity of the H. pylori. Here is full text of a recent review article with everything you ever wanted to know about H. pylori and a lot more you probably don’t ( http://70.86.17.143/~dnoom/images/PDFs/Gut-2012-Malfertheiner-646-64.pdf ) – the part of interest says, “. . . serology is the only test which is not affected by local changes in the stomach that could lead to a low bacterial load and to false-negative results of the other tests. This is owing to the fact that antibodies against H pylori and especially against its most specific antigen CagA, remain elevated despite transient decreases of the bacterial load and even for long periods (months, even years) after the disappearance of H pylori from the stomach.”
This also means that if the blood antibody test (serology) shows that you do have H. pylori and you are treated, serology won’t tell you if the treatment worked or not. Therefore, your doctor will want you to have breath testing (or stool testing) to find out if treatment worked. To make sure the breath testing (or stool testing) doesn’t miss any surviving H. pylori bacteria, you need wait at least 4 weeks after the H. pylori treatment is finished so that any H. pylori that weren’t killed will have time to recover from the acid-suppressing drugs and antibiotics enough to show up on the breath (or stool) test.
I know what you mean about current medical practice not picking up on symptoms caused by gluten. I stopped gluten because I was diagnosed with palindromic arthritis and was told the only treatment was painkillers, that there was no treatment that would fix the problem. In searching for more information, I found postings by people with palindromic arthritis who got better when they stopped gluten, so I thought I’d try it. Not only did I stop having flares of palindromic arthritis, to my vast amazement, the “irritable bowel syndrome” I’d had for a couple of decades went away overnight. (At least, 90% of it did – and without that 90%, I was then able to figure out the other foods that gave me GI symptoms and stop eating those other foods as well.) And this is totally embarrassing but I have to confess two things: first, I am a doctor so you’d think I’d be better at figuring out stuff like this. (I wish!!) And second, about four years before I stopped gluten, I did wonder about gluten intolerance and asked to be tested for it. I had an anti-tissue transglutaminase (aTT) a test, which is used to test for celiac disease. The result was negative and I believed that meant I wasn’t reacting to gluten, so I didn’t try going off it. It would appear that there are forms of gluten intolerance that aTT testing doesn’t pick up.
Like you, I think it’s a really good idea to pay close attention to one’s instincts . . . .
Gillian
Hi Gina,
From the time I was 18 until I got married at age 33 I was a very thin 132 lbs nearly all of the time, being 5’6″, so it seems like I should be able to relate to you.
I have had hypothyroid symptoms off and on for my entire life, but I wasn’t diagnosed with it because my TSH was never high enough, if that was even tested before I was in my 40’s. I was never told it was.
I asked for a thyroid test when I was about 23 or 24, but it seemed like my doctor didn’t see a need for me to be tested, if he tested me anyway I don’t know because in those days we didn’t even know the names of the medications we were prescribed. I was tested in my mid-40’s, told I was “normal” and tested every year after age 52 also with “normal” results.
When I turned 60, 5 years ago, my TSH dropped nearly to zero, but my FT4 was barely 0.1 above the normal range, so I didn’t need treatment right away. When I did start seeing endocrinologists I got over-treated and was made hypothyroid. I was hypothyroid per FT3 but normal with TSH and FT4 when I was able to stop the anti-thyroid drugs last December, but felt awful and began to gain weight with little or no appetite and forgetting it was even time to eat.
I went to my Endo #3 in May this year, and in June I went to a new MD who seems somewhat trained in Integrative Medicine. The new Endo let me know that there was no defect shown in my pituitary but I had antibodies both stimulating the thyroid and destroying it. The new MD put me on the L-T3 5mcg tablets with instructions that I could have up to 2 tablets daily, depending on how I feel. I took a half of a tablet, which was both a huge jolt to my system but a feeling of finally being able to function like a normal person again.
It was so good, I didn’t feel a need for another one the next day. I tried to regulate myself according to how I felt, but I ended up taking ever smaller portions of the pill until I figured out how to get them as small as an eighth tablet. When I returned to the doctor in 2 months, he could see I needed to be more consistent and let me build up from 1/8 pill daily for one week, increasing to 1/4 pill the next and so on by 1/8th pills, each week. In actuality, I took longer to go from 1/4 pill to 1/2 pill at the time of my next labs, then I increased to a whole pill over this next week and saw the Dr. again this afternoon.
With that in mind, I will tell you what happened to me with my weight.
From 1983 weighing about 130 lbs. until 1988, I had four children and didn’t think much about my weight because of the ups and downs with the pregnancies, but during my third pregnancy, I was confused and, while trying to “eat healthy”, I stopped eating foods with additives like nitrites and food colors, not thinking about replacing those foods with healthy alternatives. I became very tired and sluggish and spent most of the days on the couch, becoming even too tired to go to the kitchen and fix myself something to eat. I was due January 8th and during the preceding holidays I got dairy egg nog and guzzled it. My daughter was the heaviest baby I had had: 7 lbs 3 oz. and I had gained a layer of fat over my abdomen which never went away. I was sick, pale and jaundiced with brittle hair, after she was born but the doctor couldn’t tell me what was wrong, except that I had high cholesterol and should go on a low-fat diet, and unlike my husband I had no sign of infectious mononucleosis. During the next nine months I had a cough nightly. My doctor asked if I was pregnant and I said “No,” because I hadn’t had a period, so he prescribed Medrol. It stopped the cough and made me feel very energetic, but another nine months later I had another daughter. I was 40 and wanted more children but had 5 miscarriages after that.
Anytime I would try to lose weight after that, I never lost more than 5 lbs but it was followed by a gain of 10 lbs. until I weighed 200 lbs at age 59. Just before my 60th birthday I tried a different kind of diet which had very few restrictions: No caffeine, no alcohol, and no sugar substitutes. Just eat 3 meals with Water, Veggies (except for breakfast,) Whole Grains, Protein, and Fruits along with desserts, fats and sweets; and 3 snacks of Water and Veggies.
I not only lost weight (about 10 lbs in about 12 weeks), but I also had more energy. Then, I was diagnosed as hyperthyroid. I was also scheduled for a colonoscopy which reset my appetite and ability to eat down to a minimum so I could no longer keep up with the diet and I regained some of the weight. Yes, this is also paradoxical that I should have lost weight eating more and gained weight eating less, but that was the way it was.
Under the anti-thyroid drugs, I gained up to about 206 lbs. I rebelled against taking the ATDs and weaned myself off of them in early spring 2010 and didn’t return to that Endo #1. I spent a pleasant summer having a reasonable amount of energy and some weight loss until I was coerced into going back to an endocrinologist. I went to Endo #2 who was more reasonable than the first, but still I suffered a lot and gained up to at least 212. Eventually I started a weight loss program that involved both diet and exercise, and got down to 196, but I had trouble maintaining it.
From April to December 2012 while on decreasing amounts of anti-thyroid drugs I gained from 197 lbs to 202 lbs. Then I went off the ATDs again, this time with the Endo’s agreement. I still felt Hypo, though, and the Endo would not give me supplements. I felt worse and worse, had low T3, and lost a few pounds at first, but then started gaining again. In January this year I weighed about 199 and increased to 205 by the first part of June.
I started the Cytomel on June 17th. and gained another pound, but then started losing slowly as I became more stabilized in my eating habits, etc. until weighing about 202. After becoming more regular and with smaller dosages of the Cytomel, my weight has continued to drop to 199 in these last 6 weeks.
From my experience, the weight gain or loss isn’t due to the Cytomel alone, it needs to be coupled with a healthy, non-restrictive diet that emphasizes balance and variety and plenty of water, as well as reasonable amounts of exercise. Also, I believe too much Cytomel is like too much dieting or too much exercise, which doesn’t work for those of us who are not prone to being anorexic. In short, I believe that the thyroid controls weight loss but not in the way you might think. You have to try to eat MORE than you burn, in order to BURN more calories than you consume. As far as I know, though, I am the only one who thinks that way. 🙂
Also, in my opinion, the smallest dose of L-T3 is way too strong for someone who is very low to take all at once without a gentle buildup and adjustment time.
I am going to be starting on Levo-thyroxine (L-T4) in addition to the Liothyronine (L-T3) now that I have seen the doctor again.
Thanks Fern!
I forgot to mention that my doctor wanted me to take my weight divide by 2 and drink that many fluid ounces of water per day. Even though I don’t usually make it to 3 Liters (100 fl. oz.) I am doing much better at it, which would have been totally impossible before taking the very low doses of L-T3.
Any weight loss I have had may be attributable to the water.
Although I’ve been dx with both Graves and Hashimoto’s and constantly fight hyperthyroidism, I’ve needed to be on Synthroid but it was the T-3 that gave me back my brain and personality. Yet, the fluctuations in test results are constant and I’m always re-adjusting and trying to balance out…
You sound a lot like me. I’m glad you got to be on the L-T3.
Chris,
You started this blog in November 2011, and asked the question: “Have any of you tried thyroid replacement for Low T3 Syndrome? If so, what was your experience? Please let us know in the comments section.”
Are you still interested in the responses or have things changed over the years?
In case you are still interested (and I have included a more complete history in other comments of mine), I have now been in treatment for low T3 in connection with both GD and HT, having both types of antibodies present, for about 3 months.
At first, trying to get the proper dose was difficult, and I started out with 1/2 tablet, ie 2.5 mcg. It seemed like a huge jolt to my system and I didn’t take any the next day. In fact, I learned to cut the tablet into pieces as small as an eighth to try to get the right dose. Even then, I only took it very sporadically until my next blood test. The test showed minimal improvement in my T3 levels, and my doctor insisted that I try taking it daily, starting out with the eighth tablet and increasing my dose by 1/8 tablet each week, with the idea that I would decrease to the previous level if I had symptoms of becoming hyperthyroid, principally based on my BP and resting HR, averaging three times in a row.
When I went up from 1/8 to 1/4 pill, I felt good, but the following day I forgot to take it, or any of the other pills (OTC vitamins, minerals, and supplements) that morning. The same thing happened when I increased my dose to 3/8 of a pill, but I had actually taken the 1/4 dose for longer than a week so I could get stabilized with following what I consider to be a healthy diet.
I wasn’t sure which day I increased the dose to 3/8, but it seemed like I became more hypothyroid, possibly due to a reduction in the immune attack (TSI) but I am not being tested for that right now. It just seems like I wasn’t on the 3/8 dose for a full week, but I needed more.
Today is the first day that I took 1/2 tablet again after my last blood test and I feel good–quite normal. I took my BP both before the L-T3 and about 3.5 hours afterwards. It was 106/73 pulse 69 at 10:00 this morning, and 121/68 pulse 78 at 1:37 pm.
I am scheduled to go in for another blood test (fasting) next Monday (September 23, 2013.) I will update my report, if you care.
Here are my labs from last Monday and the one six weeks ago for comparison:
Ranges: [T3 is listed as “total” but it is obviously free T3]
T3, 2.0 – 4.4 pg/mL
FT4, 0.82 – 1.77 ng/dL
TSH, 0.450 – 4.500 mIU/mL
September 23, 2013
T3, 2.8
FT4, 1.41
TSH 1.040
August 12, 2013
T3, 2.9
FT4, 1.43
TSH 0.695
Faith, I think you misunderstood what Marco was saying. I don’t think he was recommending taking T3 in order to lose weight, just saying that some people do that, and it “works” after a fashion, even though it probably causes more damage than good. No legitimate doctor I know of would ever prescribe L-T3 for the purposes of weight loss.
I know that many of the hyperthyroid symptoms can mimic the hypothyroid ones–hence the need for blood tests. What you say about the dangers of taking the hormones otc, or without a doctor’s management of it is also true.
What you said here, however, is contrary to my experience: “Taking T3 does NOT increase appetite…I know, I am taking it and have been cumulatively for nearly two years. I have zero appetite most days. Nor does T3 result in weight loss…because in order to do you you’d have to be successful at inducing a hyper-thyroid state…which the body will not let you do.” My appetite was seriously reduced before I took L-T3 and now it is more nearly normal.
Also, I was a very skinny child and thin adult until I got married at age 33. During my third pregnancy, at age 38, when I got off-kilter in my eating habits and became very lethargic and like how you would expect someone with a “non-thyroidal” illness to become–I started gaining weight that never came off. After giving birth, both my husband and I were very ill. He was diagnosed with mononucleosis, and I was told I did NOT have that, but had borderline high cholesterol and to follow a low fat diet. There was no follow up. The doctor may have thought I just had a viral infection. In any case that was the beginning of my unexplained weight gain. I was very good at following a low-fat diet as instructed, at least for a while, but I lost only 5 lbs at most, which was immediately followed by a 10 lb gain.
That weight-loss and gain cycle continued until I had gained about 60 pounds, along with continued lethargy, cholesterol problems, and 5 miscarriages until about 7 years before menopause. At age 60 I started a new diet that seemed to be a truly healthy one. I lost 12 lbs in 12 weeks, and was told by my gastroenterologist “No one loses weight in America;” meaning I must have something wrong with me. I had actually also just been tested for TSH and it was found to be practically zero. A subsequent test of my FT4 showed it barely above the normal range so I was not treated at that time.
I had felt good while on the healthy diet, but I couldn’t seem to restart it after my colonoscopy. I got foggy headed and confused and when my doctor sent me a report of my labs with a note asking me to come in for a follow-up, and highlighted it, I thought he had crossed-through it instead, so I didn’t go back right away. The part of the letter that said “no treatment needed at this time” wasn’t highlighted so I thought that was the end of the story.
I suppose I am getting too wordy. Sorry. I am just saying that I did lose weight when I was not very hyper-thyroid per FT4. Endo #1 made me hypothyroid with too much anti thyroid drugs and I regained the weight plus some. I went off the ATDs for the summer and lost some weight again. Endo #2 did things differently, explaining that #1 had made me hypo, and promising not to make me gain more weight. It was slower weight gain, but still an empty promise. I became “euthyroid” but had low FT3. Endo #3 explained things better than #2, but only inadvertently helped because Endo #2 refused to see me anymore and #3 was trying to watch me by remote control since she was far away, so my family doctor was willing to treat me. His take on it was that I am “not the textbook case,” and prescribed the liothyronine. I haven’t begun to lose weight yet, but at least I am no longer gaining it.
Hypothyroidism can make you gain weight, sometimes water-weight which is hard on the heart. Hyperthyroidism can make you gain weight, possibly depending on something in your individual physiology, or perhaps because of Reverse T3 when you fail to eat as much as you are burning. I don’t really know why, but I know if I became more hyper I started gaining weight, and only lost the weight when my FT3 was near the top of the normal range.
All in all, it is true that any of us who are not doctors, especially not endocrinologists, might be mislead by the stuff that is on the internet and may pass it on here. Maybe we need to post disclaimers….
For myself, I should say “I am not a doctor, nor do I play one on TV. Whatever I say is based mostly on my own experience and may be subject to error.”
Fern,
One of the problems is that there are too many variables. There is a vast difference between thyroid failing for no other reason than the thyroid is failing…and all the other reasons one has low thyroid. I am glad it helped you. That said, please don’t discount my experience either.
My eating is not enough to be starvation as a cause of RT3, but neither is it too many calories…generally pretty low. As I say, I have zero appetite…so it is a challenge for me to get enough to eat. Indeed, i only lose weight when I can get calories up really high. No amount of taking T3 has increased my appetite…and indeed, when I took too much it was even worse…food nauseated me.
You can be hypo-T3 as well…and as you said your TSH was very low…which means you were on too much T3. This suggests to me that your liver is not functioning ideally…or that you were comprmising it in other ways during that time. In short, you did create a disease state. As I said, my cousin lost (and kept off) 50 lbs in two days with super high blood sugar.
There are a number of reasons for weight gain and inability to lose that have nothing to do with food intake or thryoid. For example, too high norepinephrine…or too low taurine.
Soooo wish things were as simple as you set them out to be. 🙂
Faith,
I appreciate your obvious concern and desire to help that is behind all your comments. Apparently it is also very difficult to get a message across clearly and the way we intend them to be in a short comment, or even in a long one.
I understand that your situation is vastly different from mine and I do NOT discount your experience. I just want to let you know that there really ARE more variables than you SEEM to have acknowledged before. NOR did I intend to imply that my experiences or opinions are applicable to very many other people. I have simply stated SOME of them in the hopes that someone MIGHT also be benefited. I certainly have NOT intended to imply that I think anything about the human body and its function is SIMPLE. It IS very complex.
You accused me of making blanket statements in another comment, but that is how some of your statements have come across to me. THAT was what I was trying to point out when I quoted you: “Taking T3 does NOT increase appetite…” If you didn’t intend that as a blanket statement, you could have said “Taking T3 does NOT ALWAYS increase appetite…” I have usually tried to use qualifiers in my statements to indicate that I accept that there is a wide variety of possibilities. I have NO bad feelings toward you, however, and am just pointing out this, to help you see how you MIGHT be coming across to SOME readers. Apparently, you really never intended to come across that way yourself, and I won’t hold it against you. If I also lack the ability to explain myself in a pleasing and appropriate way, please cut me some slack, too, OK? Thanks. 🙂
I did post links, you apparently missed them:
http://edrv.endojournals.org/content/13/3/596.short
Although about something a bit different…taking excess thyroid hormone (T3) in order to induce a hyper-thyroid state (in order to lose weight, as you say)…would be recognized as happen when the pituitary’s TSH is supressed…meaning that the body clearly does not want any more thyroid hormone as it has too much already. While we will disagree on your ability to successfully do this (as I contend that the liver would clear it), eiher way…suppressed TSH…
…they say: “isolated TSH deficiency causes hypothyroidism and thyroid atrophy.”
Likewise, anyone even thinking of taking T3 or other thyroid hormone (while they have a normally functioning thyroid, should have their Alkaline Phosphatase checked regulatly to ensure that they are not-demineralizing their bones. One of the causes is hyper-thyroidism:
http://en.wikipedia.org/wiki/Elevated_alkaline_phosphatase
Furthermore, I added (in regards to your studies):
PS…your first link is a study about thyroid-supression therapy…usually given to those who have thyroid auto-immune. This is different than giving thyroid hormone. Apples and oranges.
Your second study caps out at 56 days taking thyroid hormone. So…from that your best argument from this study is that you feel it is safe to take unnecessary T3 (for weight loss) for 2 months.
Furthermore, this study only evaluated their TSH levels…which is the pituitary not the thyroid. So while their pituitary recovered…this has no bearing on their thyroid. This has far more bearing on their hypothalamus.
Hope that helps.
That said, I have NO WISH whatsoever to “prove” to you that giving people T3 for the sole purposes of losing weight is an unethical and dangerous practice…it is already KNOWN in the world at large to be a bad practice (even says so on the rx’s per endless lawsuits forcing it to be put on the inserts). Furthermore, recently there have been at least three posters who had no thyroid issues and yet were given T3 for the sole purposes of losing weight…and all three reported (here, in this very blog) that not only did it make them very ill…none lost any weight as promised. That speaks louder, in my view, than your studies. Likewise, my own experience contradicts yours. Additionally, your weight gain was purely from your thyroid issue…so of course you taking thyroid would clear it up. As I said, I suspect that you have a other underlying issue in that you caused/created a medically recognized disease state (with your diminished TSH)…which is NOT what I was referring to…as I have said that in a healthy body you could not induce a disease state. That said, that you have some other underlying issue is likely evident in that you 1) read this article; and 2) felt some need to comment…had you purely had primary hypothyroidism that was perfectly cured by taking some thyroid hormone your search for answers would have ceased. That you are still searching for answers means that there is still something wrong…which puts you in the pool of the rest of us…and I will say again, it is not near so simple or straight forward as you want to make it out to be. Hopefully we can both agree on that. 🙂
PS…you have to realize that there are TWO distinctly different sources of information in thyroid land. Bonafide medical knowledge and science…which doctors learned in school…and what people on the internet think they know which usually has a little bit of science and a whole lot of hypothesis (granted, it is often smart sounding hypothesis…but is still just hypothesis and not-fact). Most of what doctors know does NOT end up on the internet…nor does it need studies because it is known fact.
My ever-present advice is don’t get sucked in by intelligent sounding stuff on the internet…check it out. And to check it out by looking at the body’s process and seeing whether it fits…and then look deeper at the process. When you learn the systematic process from the hypothalamus to the liver (of the thyroid process), then much of what is on the internet instantly shows itself as false. Now, I am sorry about all the false information…and it pains me that it misleads people…but all I can do is correct the information to the best of my ability…the rest is on everyone else. Educate yourself, educate yourself, educate yourself. To that end, I can (at this point) have exceedingly detailed conversations about the innate processes regarding thyroid…right down to enzymes and genes…and why supplements, previously thought useful, end up causing more problems than good.
PSS…in regards to taking thyroid for the sole purposes of losing weight…and the thyroid atrophy it causes, think of this:
You can probably ride around in a wheel chair for 56 days and still get up and walk. You are unlikely to walk, due to extreme muscle and tendon atrophy, after a couple of years in the wheelchair.
Now, I WISH upon wish that people “just tried it” as opposed to the countless reports of peope who have been on high doses of thyroid hormone for years that they did not need. Yes, there are many cases of gland atrophy…doctors know this. Even the practioners who give patients this (because this is what patients want to buy), know this…they know this and do it anyways. Just like how doctors KNOW not-to cut the umbilical cord on babies…and yet do so anyways.
To get a grasp of just how pervasive bad treatment can be…consider that in tribal africa babies smile on day one, sit at three months of age, and walk at six months of age. Why our babies do not…because of oxygen deprivation brain damage due to premature cutting of the umbilical cord (less than 4 hours). In all the medical books that all doctors studied before passing medical school…no where does it say to cut the cord. In fact, it says to leave it alone. Yet, when doctors do their residency the see the older doctors cutting the cord…and so they do too.
Best illuminated by the story of the easter ham. Little girl watches her mom cut the end off the ham before putting it in the oven and asks her mother why she did so. The mother replies that she does so because her mother always did. So the little girl asks her grandmother, how says the same thing, because her mother always did so. So she asks her great grandmother who says that she used to because the first house they had had only a very small stove and the whole ham did not fit in the pan…but as soon as they got a bigger stove she never did that anymore.
Faith,
When I said my TSH was nearly zero here, it was when I was 60. By that time (5 years ago), I had never taken a thyroid hormone, so I did not cause my own diseased state that way.
I have heard it said that the most frequent cause of thyroid diseases in the U.S.A. is autoimmune attacks. As far as I know, the cause of autoimmune attacks has not yet been determined.
Autoimmune hyperthyroidism is called Graves’ Disease (GD). The immune system creates a TSH-like substance referred to as TSI (Thyroid Stimulating Immunoglobins) which causes FT4 and FT3 production to increase which lowers the TSH. The fact that this happens is outside a person’s conscious control, and that is what happened in my case.
Autoimmune hypothyroidism is usually called Hashimoto’s Thyroiditis (HT). I have also read that there is another type called Ord’s Disease that is more common in Europe and which is different from HT in that HT may shift to GD and back again whereas Ord’s does not.
From what my most recent Endocrinologist told me, I have both GD and HT.
There is a difference between having too much T3 produced by your body, and “taking T3”. I use the L-T3 abbreviation to mean the type of T3 made by the drug companies (Liothyronine), which is the kind a person can “take”. There are other designations to more accurately describe the forms of T3 (Triiodothyronine) found in the body: Total T3 (TT3) is the easiest to measure. Reverse T3 (RT3) has been addressed sufficiently by Chris Kresser with its role in low-T3 syndrome. Free T3 (FT3) is the most biologically active form of the hormone, but it occurs in such extremely small amounts in the human body that measuring it accurately is not considered reliable by most endocrinologists unless it is above the normal range. That is why they rely on the TSH numbers.
Also, my doctors were also concerned about my liver function and have tested it many times, but the results showed no problem with it.
Fern,
My mistake then (in regards to your low TSH and T3).
Sorry about your liver. Unfortunately, the usual labs that they do for liver are tests that measure if the liver is dying (i know, weird and stupid, but take up your complaints with the medical industry and not me, the messenger)…what you need are “liver function” tests. No, I don’t know what they are offhand…but that should point you in the direction of where to begin looking.
For what it’s worth, there ARE things you can take in the L- form (like L-Methionine)…but there are also things you can take in other forms, for example N- forms (like N-Acytel Cysteine)…but not everything is in those kinds of forms. There are also things in S- form (like S-Adenosyl Methionine or SAMe as it is usually called). As well, you have things in number forms too (like 5-Methyltetrahydrofolate).
Likewise, for what it is worth to the conversation, I found this on the drugs.com site in regards to T3 and weight loss:
“Warnings
The use of thyroid hormones in the therapy of obesity, alone or combined with other drugs, is unjustified and has been shown to be ineffective. Neither is their use justified for the treatment of male or female infertility unless this condition is accompanied by hypothyroidism. Thyroid hormones should be used with great caution in a number of circumstances where the integrity of the cardiovascular system, particularly the coronary arteries, is suspect. These include patients with angina pectoris or the elderly, in whom there is a greater likelihood of occult cardiac disease. Therefore, in patients with compromised cardiac function, use thyroid hormones in conjunction with careful cardiac monitoring.”
As I have said…
Faith, regarding the liver function tests, the Mayo Clinic staff made this statement: “Liver function tests are blood tests used to help diagnose and monitor liver disease or damage. The tests measure the levels of certain enzymes and proteins in your blood.
“Some of these tests measure how well the liver is performing its normal functions of producing protein and clearing bilirubin, a blood waste product. Other liver function tests measure enzymes that liver cells release in response to damage or disease.
“Conditions other than liver disease or damage can lead to abnormal liver function test results. Test results can be normal in people who have liver disease or damage.”
For Results, the Mayo Clinic goes on to say, “Normal blood test results for typical liver function tests include:
ALT. 7 to 55 units per liter (U/L)
AST. 8 to 48 U/L
ALP. 45 to 115 U/L
Albumin. 3.5 to 5.0 grams per deciliter (g/dL)
Total protein. 6.3 to 7.9 g/dL
Bilirubin. 0.1 to 1.0 mg/dL
GGT. 9 to 48 U/L
LD. 122 to 222 U/L
PT. 9.5 to 13.8 seconds
“These results are typical for adult men. Normal results may vary slightly from laboratory to laboratory, and be slightly different for women and children. Results may also be affected by certain foods or medications. Be sure to mention any foods or medications you’ve eaten or taken so that your doctor can correctly interpret your results.
“The farther from normal the test results are, the more likely you are to have significant liver disease. Your doctor will use these results to help determine any treatment that may be needed. If you already have liver disease, liver function tests can help determine how your disease is progressing and if you’re responding to treatment.”
The ‘description’ and ‘results’ shown here seem like the tests the endocrinologists and even my current family doctor have run.
My current family doctor seems very knowledgeable and aware of new medical findings. It was hard to find a good family doctor after my old one retired a couple of years before I was diagnosed with Graves’ Disease, but this one seems to be very good so far, for both my husband and me.
Thank you for the warning about the use of thyroid hormone for weight loss, etc. As I tried to explain before, I know that already, and I neither practice it nor recommend it to anyone.
Perhaps I misunderstood you originally, when it seemed like you were saying weight loss doesn’t happen with excess T3 in the body. It does. It happened to me when my Graves’ Disease started taking over. I also have a neighbor who had Graves’ Disease and lost an unhealthy amount of weight before he was diagnosed and treated. I know of other people who have gained weight with excess T3, however.
I’m just saying it happens, not that losing weight under those conditions is good. All I want is to have normal thyroid levels in the upper part of the range with the TSH in the lower part of the normal range. We are all a little bit different physiologically, and I think that having those normal levels is where I feel the best, and where I am best able to control my own health through diet, exercise, sufficient sleep, and other lifestyle habits.
The one other thing that interests me is having a DNA test done by 23andme. It is on my Christmas wish list. You had that done, right? So it is where you found out about the low-taurine, right?
Fern,
*Sigh*…Please don’t shoot me for being the bearer of news you did not know, but the standard liver tests they run (that you mention here) are liver damage tests (aka show liver death) and NOT function tests. The function tests are different tests, that they do not normally run (or even normally think to run when people have liver trouble) <–as I say, take that up with the medical community.
The Wiki has this to say: http://en.wikipedia.org/wiki/Liver_function_tests
"Liver function tests (LFTs or LFs), are groups of clinical biochemistry laboratory blood assays designed to give information about the state of a patient's liver.[1] The parameters measured include Prothrombin time (PT/INR), aPTT, albumin, bilirubin (direct and indirect) and others. According to some[who?], liver transaminases (AST/ALT (SGOT/SGPT) are not liver function tests but liver damage test—biomarkers of liver injury in a patient with some degree of intact liver function."
Repeat, they are NOT liver function tests. The liver function tests are different.
As to the 23andMe test, yes I have…and it has been by far the greatest help…but not in as straight forward a way as one might think. While it really shouldn't surprise me anymore, although it still does, what the so-called "experts" on the genetic things say to do (like methyl-folate) make me sick. My doctor, who is good, has had me try at least 5 of the things the experts reccommend, all to no avail. That is when I gave up on that direction…and instead, looking at the report (free report from Genetic Genie)…I had her test all the things that it says these genes supposedly affect. THAT is where I got my best leads. And that is where I got a much clearer picture of *what* specifically is going on in my body. Likewise, I like to have tests to confirm things (as opposed to the magical thinking that is so prevalent these days).
What I found is that I am not makig enough taurine (although have high cysteine…that which we make taurine from). I found that I am not making adrenaline very well (although have high dopamine and norepinephrine…that which we make adrenaline from)…which also told me why foods made me sick sometimes. Most tellingly, I found that I have a GABA/Glutamate imbalance…I make too much glutamate (turns muscles on) and not enough GABA (turns muscles off)…which explained a lot! Now I have a treatment plan more personalized to *what* specifically is going on in me.
The second best part of 23andMe is the "Browse Raw Data" section…from there I found that I have a lot of mutations in the thyroid receptor. It also lets you look up various genes that are mentioned in the various genetic disorders.
I have done this test for my grown kids as well (who are all also sick with similar symptoms)…and it is fascinating, truly fascinating.
I wish I could say that this genetic stuff was as easy as they make it seem on the internet…and if the 5 favorite best things to try hadn't made me sick I might have been inclined to stop there…but they did…and that is wraught with the same false information as thyroid groups have. In the end, you are the master and steward of your own body…and the onus is on the individual owner of each body to learn the true biological process the body takes rather than take loosely linked internet advice (ie like iodine for thyroid, oy vey!) as fact…it is not…and it is often wrong.
So my work continues.
Yes…you had weight loss BECAUSE you were truly low T3. My comment was that taking T3, when one has normal thyroid function, does NOT lead to weight loss…as was also evidenced here by at least three posters (who had been rx'd by bonafide drs *sadly*). Likewise, I take T3 (have no thyroid), and do NOT have weight loss. Hope that clears up the misunderstanding. 🙂
Thank you. I can hardly wait to get my DNA tested. My husband is also interested, and I’m not sure if other family members are, as well.
I’m sure the medical community is still a long way from having all the answers, but I feel a little guilty when I disagree with the standard protocol. How did you get your liver function tests done?
It is that attitude, that in the end we are each in charge of our own health, that has helped me a lot along the way.
I do believe that I was low T3 for a long time before I was tested, and that the best weight loss I had was before I became fully hyperthyroid with the Graves’ [and again between the times that my thyroid was suppressed by my first endocrinologist and the time I saw the second one (about 3 months)].
In my case, your supposition works only if you can accept that these same crazy medical doctors are wrong in accepting the TSH levels as the best indicator of thyroid malfunction. I believe that my TSH is always lower than would be expected with my T4 and T3 levels. I believe my T3 was low even when the doctors were saying my TSH was in the normal range for several years. Now I have a doctor who agrees with me that my TSH and T3 levels don’t match, at least; saying that I am “not the textbook case.”
Your attitude is still a little confusing to me. You seem to think it is a big mistake to take much advice off the internet, but when you do take advice from the internet, you obviously prefer sites like Wikipedia to sites like Mayo Clinic. How do you feel about the clinical health studies that are published in scientific journals?
Also, why don’t you have a thyroid? Was it surgically removed, or did you have RAI? Why? Cancer? or some other reason?
The thyroid doctors have all recommended at one time that I have RAI or a total thyroidectomy, but I refused.
Fern,
For what it’s worth…I don’t take (to heart) categorically ANY information on the internet. I might look there for a while to get an idea of what direction to go in…but I invariably go back to the books. The trouble is, people like you *warm smile,* who asks me for links. So then I have to go traipsing all over the internet to try to find a.n.y.t.h.i.n.g that comes close to matching what’s in the books. And…well…yes, the wiki does tend to do that more often than not.
Also for what it’s worth, I care far more about the actual functional biological pathway of things…and not the opinions attached. For example, I wanted to know exactly how we convert thryoid hormone…with what enzyme/s, where, when, and how…and now, what genes that instruct those enzymes. Beyond that, I categorically disregard any and all hypothesis and opinions others (like the study doers and website writers) have attached to it. So my links, what one’s I give, are merely to show that this is indeed the way the pathway functions. Again, the wiki tends to cover that best as well.
Why I don’t like the Mayo Clinic’s website…hmm…have you ever read their stance on thyroid treatment? Like the articles? Yeah, well I did and I am of the attitude…not so much. Here’s a link to a series of articles there: http://www.mayoclinic.com/health/wilsons-syndrome/AN01728 It also might interest you to know that not only did the makers of Synthyroid write the hypothyroid “standard of care” that doctors have to follow or risk losing their license…but that they pay doctors large amounts of money to follow it. In most places doctors have to disclose this information (on my original primary’s clinic’s website, they disclosed that he had been pain $250,000 by Synthroid…not like I stood a chance there).
By the by, you and I are probably of the same opinion in regards to TSH. The problem is (and few separate this) there is a vast difference between “primary hypothyroidism” (meaning that in isolation and for no other reason the thyroid is failing to produce thyroid hormone)…and everything else that goes wrong. Doctors have estimated that only aprox 5% of thyroid patients have primary hypothyroidism…and that all the rest have something else. That said, I have to begrudgingly admit that for true primary hypothyroidism (meaning that in isolation and for no other reason that the thyroid is failing)…it is the best and most logical way to approach thyroid treatment. However, for the other 95% of thyroid patients…it doesn’t even come close to helping anyone. Sort of like giving asprin for a broken arm. Likewise, I am an outspoken advocate for pituitary/hypothalamus testing when the numbers don’t match up (like mine).
All that said, I can tell you only what I know…and I don’t tend to venture into what I don’t know, other than to point to the direction to those so interested. Sometimes people assume that because I know so much about one thing that I must know about everything else, this is not true. Likewise, I am still on my journey for answers…and have not been able to complete the thyroid/pituitary/hypothalamus journey (or liver journey for that matter), because there are other, more pressing, health issues that take precedence. So no, I don’t know what the liver function tests are (yet)…only the direction to go. Nor do I know the pituitary/hypothalamus testing…only that it seems warranted in a number of cases (including mine). Currently I am trying to wrap my exhausted and confused mind around genetics…from how to read the raw code, to digesting how we make and unmake numerous chemicals…and all the things that might influence our doing that…much less try to put that into something that others could understand and make use of…iy, yi, yi…not an easy thing to do. So I am sorry for the answers that I don’t have. I am further sorry that sometimes certain people have a tendency to get upset when presented with information that doesn’t fit their beliefs…but I think the information is important enough to risk upsetting some…and hope that people will have the maturity to deal with it. Once upon a time people believed that the world was flat too…didn’t make it so.
As to researchers…*epic sigh*…while I wish it were not-so…it is so…that research is fallible. Easily fallible even. So here is a simplistic example of studies done to get drugs approved for uses from the FDA: For example let’s say that we want to see if warfarin (a blood thinner) can be used for pain. Now blood thinners have no (or at least I don’t believe that they do) functional connection to pain. However, take 20 people in pain…give 10 a placebo and 10 warfarin. IF more people in the warfarin group experience pain relief…the FDA will allow them to market warfarin for pain…and doctors (without so much as a second thought – most of them) will start rx’ing it for pain. Even though there is no true connection to it helping with pain. Case in point, they are currently giving gabapentin to people with fibromyalgia…gabapentin is Neurontin…one of the stronger psych drugs used to treat bipolar disorder. And yet, the fibro community is 1) convinced it is a pain killer even though it doesn’t work for a large number of them; and 2) upset that they doctors they see think that they are nuts…and make no connection to the fact that they are taking a psych drug as possibly accounting for those dr’s points of view. So why I don’t trust the studies.
What I do like about some studies is that they give the functional pathways…which is hugely helpful (for me) in figuring out what direction to go. The largest case in point (that I can think of offhand) is the plethora of Vitamin D studies…ugg…when you know that what they test to find out of people are low is the 25,D (same category as T4)…then you can see that the bulk of tests are misleading if not false on their faces. Never are they testing the 1,25-D (comparable to T3). If it were the same for thyroid studies you’d sigh too. Studies tend to test a hypothesis…if I go out at dawn and sing, will the sun come up? Oh yes, I have done it multiple times on multiple days…and so have others…so it must be true that our singing causes the sun to rise….right? Even on a more practical level…if you rounded up all the hypothyroid patients and ran a study…it wouldn’t tell you much of anything because people are hypothyroid for numerous reasons. Ok…I probably shouldn’t have started on why studies are virtually useless.
My daughter is in her 4th year of college…and she has found what she wants to do in life…she could do it now, I suggested that she stay and get the degree…why? Because people (mistakenly) give more credence and credit to those with degrees. She laughed and said she was just studying that…about how people are misled that way. Same is true of studies, imho. Best that one can get out of them is insight into the function of the body…like how exactly the thyroid receptor or vitamin d receptor truly works.
Anyways, good luck.
I suppose there are times when we must agree to disagree.
I do not give any more credence to what is found in books than to what is found on the internet. The internet has advantages over books because there is no up-to-the-minute information in a book. Also, sometimes the information from books is published on the internet and it is easy to search for the information here.
I accept some of the basic things published by the “experts” especially when it fits with my own experience, and in any case, I like to know what opinions traditional medicine hold fast to, even if I don’t agree, so I am prepared for what I experience going to the doctor. I like to learn what is found in recent research studies, and evaluate it for how well the study was done, etc. and how valuable the finding might be.
I don’t really care whether or not “Wilson’s syndrome” exists, “a rose by any other name smells as sweet.” The fact that mainstream doctors do not accept it, simply means I need to call it “hypothyroidism” or perhaps “Low T3 syndrome” (if that is actually accepted by most of the medical community)–which I am not actually sure about.
Because of what I read on the internet published by the ATA and AACE, which is thoroughly mainstream, I know that they acknowledge secondary (with pituitary involvement) or tertiary (with hypothalamus involvement) hypothyroidism, but consider them to be extremely rare, due to an adenoma which is possibly too small to detect.
On the contrary to what you say, “Doctors have estimated that only aprox 5% of thyroid patients have primary hypothyroidism…and that all the rest have something else,” nearly all mainline doctors accept that well over 99% of hypothyroid patients have it in the primary form. Most of those do have the autoimmune cause, but it is still considered “primary.” You are talking about thyroid patients in general, though, so that includes those of us who have been hyperthyroid, that is in the minority, but not so rare as those who they accept as having hypopituitarism aka “central hypothyroidism” and even rarer is a problem with the hypothalamus. (All according to what the traditional doctors, mainly endocrinologists, say.)
Personally, I think there is a genetic reason that some of us have both low TSH and low thyroid hormones. Recent research sounded like they were attributing it to an autoimmune attack on the pituitary or on TSH receptors…I am not quite sure what they were saying in the report, and I only read the abstract, not the whole thing. I know that my sister has a similar problem to mine, and it seems like many of our cousins do.
I know that many people diagnosed with hypothyroidism do NOT have tests done for autoantibodies, but the whole autoimmune thing is hereditary, and the recommendations from the ATA and the AACE are that the doctor should try to find the cause of either hypo or hyperthyroidism. Anyway, people often have more than one autoimmune disease at the same time. My sister has one that is not related to the thyroid, as did our mother, cousins on her side, and at least one cousin on my father’s side of the family.
Wouldn’t it be strange to find that we are related, too?
Good luck to you, too.
Fern,
Whether or not it is (in err) called, “primary hypothyroidism,” (maybe becaue they do not know what else to put down?)…does not primary hypothyroidism make. The true definition of “primary hypothyroidism” is that for no other reason the thyroid in isolation is failing to produce thyroid hormone. This is simply not the case for most people. This is dx’d by high TSH and low T4 and low T3.
Those who have low TSH have either a pituitary/hypothalamic issue or some other chronic disease for which their system has down-regulated itself.
Those who have “low T3 syndrome,” and the author mentions in this article…is often due to some other underlying condition.
While it is theorhetically possible for someone to have both primary hypothyroidism (a failing thyroid) and thyroid autoimmune…it is unlikely to be the case. Yes, bonafide doctors DO estimate the numbers of thyroid patients with thyroid autoimmune to be aprox 80%…that would mean that only 20% or less could have primary hypothyroidism…but for it to be 20% that would have to mean that there is no other cause of thyroid issues, which is also not the case.
The plight of all those not having their antibodies tested…and in the face of all the internet information telling them to take iodine…well that risks people’s injury and even potentially their life. You can argue to the moon and back that the information on the internet is better than books…I will disagree whole heartedly (especially in terms of thyroid).
Glad to see that we both share the same opinion on the Mayo clinic…remember, you used to think they knew a thing or two, I disagreed. Yes, their stance on the thyroid leaves a lot to be desired. As I said, at the bottom of the article was a link to the next in their chain of thyroid articles…all equally disappointing.
In the end, unfortunately, the onus is on the patient to educate themselves…and live with the consequences of that education. As long as it remains on the internet, people will undoubtedly keep believing that they should take iodine…and as long as people think that this is education, they will undoubtedly *broken heart* keep telling people to take that iodine even if they are autoimmune. And as long as I run across such nonsense, I will add my piece to correct the misinformation that they think they know…because, when you go back to the books (the thyroid pathway never changes by the way) then you can see squarely why taking iodine, esp in the face of autoimmune, is disasterous at best.
Studies are hypothesis played out…they still do not change the functional pathway that things happen by. My interests (which I suspect are different than yours), are the functional pathways. Yours appear, to me, to be to find the latest thing they are trying to try it yourself. I am not interested in that…I am interested in the pathway…to find my own idea of what I think will work for myself and try that. Two different approaches, likely based on our individual confort levels, neither right and neither wrong…just the way we each go about things.
Good luck to you.
Faith, I really like our little discussions, but it blows my mind away when I find out that we aren’t speaking the same language.
I grew up being told “don’t believe everything you see in print,” now, that is transferred to the internet. I don’t necessarily believe either what books say or what is found on the internet. I judge each piece of information for its own merit. You don’t have to put links on for an explanation of what you believe now that I know how you feel about the internet. You can cite the book if you want. I won’t necessarily believe it, but I won’t blame the misinformation on you. ***Kind of kidding–I won’t blame you anyway, really.*** 🙂
The New York Times put forth a definition of primary and secondary hypothyroidism that matches my understanding of it:
“Primary hypothyroidism is when the thyroid cannot make the hormones T3 and T4 because of a problem with the gland itself. In the U.S., the most common cause is destruction of the thyroid gland by the immune system. This condition is called Hashimoto’s thyroiditis. Not having enough iodine in the diet is a rare cause of hypothyroidism in the U.S.
Other causes of primary hypothyroidism include:
Certain drugs such as lithium
Radiation exposure to the neck
Radioactive iodine used for treatment of hyperthyroidism (overactive thyroid)
Special x-ray dyes
Surgical removal of part or all of the thyroid gland
Some women develop hypothyroidism after pregnancy (often referred to as “postpartum thyroiditis”). In other cases, the cause of hypothyroidism is unknown.
Problems with the pituitary gland and hypothalamus may also cause the thyroid gland to produce too little thyroid hormone. This condition is called secondary hypothyroidism.”
There is one little tidbit of information I would add: Outside the U.S., particularly in third world countries, lack of iodine is a more common cause of primary hypothyroidism. This is also the way it was in parts of the U.S. before the introduction of iodized salt. I live in Utah, and it was the leading state for goiter prior to the use of iodized salt. That information came from my old World Book Encyclopedia published about 1957.
If you don’t know that the thyroid hormones are called “T4” and “T3” because that is how many atoms of iodine is attached to each of them respectively, then you are not understanding the functional pathways of the thyroid as well as you probably would like. Are you familiar with the types of deiodinase enzymes and their function? Chris Kresser talked about them in the first article of this series, of course.
By the way, I still think of the Mayo clinic the same as I did before. I disagree with some things, but find many things very instructive. That is how I believe about most things whether found on the internet or in books.
Also, do you have some particular interest in Wilson’s Syndrome, whether anyone says it exists or not? Wilson’s Disease is something else and is accepted as a rare but real condition, which has now caught my interest….
Faith, you’re spreading so much misinformation it’s painful to read. You put down other people for their “misinformed ideas” when you spread same kind of (or worse) misinformation. You’re the exact stereotype of a patient who reads something and then thinks of herself as an expert (so you’re also harming people other than those who may take your advice). You may “know” all kinds of things, but you don’t understand medicine. At all. It’s very sad that some people here are taking your advice seriously! A good example of your total lack of comprehension for basic biochemistry was the explanation of “L-forms, N-forms and number forms”.
Gabapentin is not a psych drug. It is an anticonvulsant aka antiepileptic. It is sometimes used for all kinds of indications – but it has been shown not to work as a mood stabilizer in bipolar disorder (unlike many anticonvulsants). Most anticonvulsants can be used for pain, especially neuropathic pain. (What is true, is that gabapentin and pregabalin are not very effective for most people with fibromyalgia, even though pregabalin has been officially approved for it.)
First off – there needs to be some clarification here with respect to feedback mechanisms and specifically how it affects thyroid metabolism, as there is some potentially dangerous misinformation being spread on this blog.
Simply put, the thyroid, adrenals, and gonads are NOT the same when it comes to feedback effects of exogenous hormones. For example, a euthyroid person supplementing with T3 will cause a fall in TSH, secondarily T4, but ALL will return after stopping the T3. The thyroid homeostasis will rapidly return to normal, unlike the HPTA. Therefore, the suppression is TRANSIENT. Bottom line: taking thyroid meds will not trigger HPTA suppression. It is untrue that the thyroid will “atrophy”.
http://www.ncbi.nlm.nih.gov/pubmed/808728
http://www.ncbi.nlm.nih.gov/pubmed/807596
People recover their thyroid hormone relatively quickly (within months, at most) after going off of several YEARS (!) of thyroid replacement therapy. Some people in the studies were on T3 for 30 years and recovered their natural thyroid function within short order.
Also, T3 has been sown to induce weight loss and is a powerful lipolytic (fat loss) agent that pro bodybuilders use to get as lean as possible before a contest. It stimulates the breakdown of cholesterol and increases the number of LDL receptors, thereby increasing the rate of lipolysis. The only caveat to this is that by T3 increasing metabolism, appetite increases, and weight gain from eating a surplus of calories could result.
Not sure who you are responding to, but I will answer for my part (as I NEVER said that thyroid and adrenals are connected…that is pure internet hogwash…and I agree, super dangerous information). That said, two things you are stating ARE downright dangerous…and that is one you will have to lump.
As I am a proponent of patient education…and more specifically, education on bodily function…so that people can more readily tell the difference between internet hogwash and what may in theory work. I am also a proponent of reasonableness and caution.
So, first off…dangerous internet information number one. While it is true that MOST vitamins (water soluable ones), if taken in excess or when a body does not need them, will be excreted…it is NOT-true that they are excreted by themselves. People taking high or unneeded doses, for example, of calcium will also excrete magnesium that binds to it. However, one could consider taking water-soluable vitamins realitively safe. Where this has become UNSAFE…is that people think of ALL supplements in the realatively same way. Minerals, for example, quickly become dangerous in excess. Even worse…because they cannot patent hormones…there ARE some hormones being sold over the counter. THESE are not simply excreted. The body is an extremely excellent regulator of itself…while it will excrete excess (ONLY IF THE LIVER AND KIDNEYS ARE FUNCTIONING CORRECTLY…something that NO doctor or practioner that I know of even bothers to look into in those who are hyper-thyroid).
Yes, while some might restore function…there are many (a great many) of thyroid patients who were not-so lucky.
So…body function. The hypothalamus sets the body’s level of thyroid need. (If you disagree I will find you a link, however, you might prefer to get a medical textbook). This level will then be maintained no matter what. So, for example, if the thyroid set the thyroid level low (because maybe the person is sick)…then no amount of taking thyroid hormone will raise it. And, you can ask thyroid pateints about this…they take increasing doses all while their levels stay low. Now, I cannot help or control the fact that the medical community is hopelessly behind in understanding this very rudimentary and simple fact. It is (primarily) the liver that will tag excess hormone for excretion…and in so doing…in the face of continual excess hormone…the body will let the hypothalamus and thyroid know to further reduce levels.
Taking T3 does NOT increase appetite…I know, I am taking it and have been cumulatively for nearly two years. I have zero appetite most days. Nor does T3 result in weight loss…because in order to do you you’d have to be successful at inducing a hyper-thyroid state…which the body will not let you do. It would also be inducing a disease state (extremely dangerous and for which drs should lose their lisence). You can also induce extremely high blood sugar to reduce weight (my cousin lost 50lbs in a weekend)…but again, that would be to induce a disease state…violating the ethic of, First Do No Harm. So…I cannot even believe you are defending this. And, you are wrong. This blog has had a few people who were erroneously given T3 (under the same false belief as yours), felt terrible…and did NOT lose any weight. That, in itself, speaks volumes. And, indeed, I can tell you from experience…too high T3 causes very similar symptoms to too low T3…excessive tiredness, paradoxial weight gain, feeling like one is going to die…literally, not-panic-based…and it is a horrible feeling. Never in a million years would I want anyone to feel like that. And…incase you did not know, hyper-thyroid is so dangerous…and so likely to result in death…that the Disability people consider it something that they automatically approve people for disability for. Why in the world would you want to harm people like that???
Cholestrol is connected to Vitamin D…and is a hormone…we make it. The liver (I beleive) makes cholestrol…and the fat under one’s skin makes vitamin D (a steroid hormone and immune supressant).
So bottom line is…IF you think that it is safe to take thyroid hormone while you have a perfectly functioning thyroid…AND…if you further believe that you have found a way to supress the liver and kidneys (and want to do that) so as to be able to successfully induce the disease state of hyper-thyroidism…in order to lose weight, by all means…go for it. That said, never in a million years will you be able to convince me that doing so is safe…or wise. I will continue to advocate against such dangerous practice.
As to linking the thyroid and adrenals…you will have to take that up with the other posters who think that is true, I do not. Likewise, I think that they border on dangerous practice of having people take hormone that they do not need.
Indeed, the article above, is asking the very bold and tough question…should one even give T3 in people with low T3 due to chronic illness. While I take T3 (and have a chronic illness), I also have no thyroid, I agree with asking the tough question…and I think he (a doctor), makes a reasonable and cmpelling point. You did read the article didn’t you??? Maybe you should write him about why you feel T3 should be given to everyone???
Hope that makes my part clear, good luck.
Faith –
My purpose is to clarify for others here and not get into a pointless pissing match on your word and against mine.
First off, are you a trained medical professional or have some type of medical background which gives any credence to back up your statements? Look, I’ll lay it on the line; I’m no medical professional, but at least I back up my comments with actual research and not just lay opinions. Some of your statements do make sense and are true, whereas others have no bearing on reality other than your own and that of you own observances and anecdotal data. But since seeing some of your posts over the last several months, your approach seems almost dictatorial as if it is gospel and I fear some of the others are taking it as such.
Furthermore, you completely misinterpreted the issue with respect to weight loss. There are ample studies that show T3 does, in fact, induce lipolysis (fat loss) which I thought I made very clear in my post, otherwise bodybuilders and figure athletes wouldn’t use as as a pre-contest staple to reduce bodyfat down to almost nothing. Fat loss has nothing to do with weight loss, although T3 used in high amounts can be very catabolic to muscle tissue which would then result in weight loss. I agree it should NOT be used as a “weight loss aid” AND I never implied it should be administered to euthyroid (normal thyroid) patients. Those that take it as a fat-loss aid are taking it at their own risk.
BHRT, and specifically thyroid HRT has a real place in today’s world. It simple cannot always be fixed by tweaking macro and micronutrients, although those can be supportive and assist in treatment. There are a ton of cases to support that argument with respect to thyroid and all hormones (i.e. growth hormone, estrogen, progesterones, testosterone, etc.). Thus, hormone replacement is not the evil you make it out to be.
Other issue regarding T3 that you again misinterpreted is that I never stated it increased appetite directly. I said it increases metabolism and increased metabolism increases appetite. No rocket science there.
Finally, without substantiating your opinions with just about everything you blog about with some actual bonafide research amounts to nothing more than blatant rhetoric and idle banter.
Post up some links to some studies and then we can have an intelligent exchange.
Faith, I don’t understand your statement that the body will not let you induce a hyper thyroid state. It is my understanding that one of the goals of testing thyroid levels is to prevent damaging levels such as occur during a thyroid storm. It is because you can overdose that they watch your levels. If there were no danger (because the liver sweeps excess away), it would be so simple – just give a large dose and let the body use what it wants. What am I missing here?
Laura, your understanding is pretty much the understanding I was given by each of my 3 endocrinologists.
Faith, I agree that you should share your sources of information if you have something more to relate about why the liver should sweep away the excess thyroid hormones.
Are you still with us, Faith?
Twice in my life I’ve been hyper thyroid. The first time was a chronic condition before they removed my thyroid. My resting pulse was above 100 (usually around 125), my metabolism was crazy fast, I was irritable, I couldn’t sit down (hyper active) and I lost down below 100 pounds (normal weight is around 120). So, I know what it feels like to be hyper thyroid.
the second time was just about 4 years ago when I was trying to figure this thyroid stuff out because my current doctor had lowered my dose so low that I could hardly function. So, I ordered Dr. Lowe’s Thyroid Gold supplement. I started out taking 3 capsules, which was WAY, WAY too much for me. 3 days later I was extremely hyper thyroid. Even though it does induce weight loss and I was overweight at the time, the feelings of being hyper thyroid are horrible and I don’t enjoy them. So, I went back on the Synthcrap until I could figure things out.
You CAN induce hyper thyroid by taking too much. Maybe people who are thyroid resistant cannot, but a normal person can. I have no antibodies and no other illnesses. I did have high RT3, but after getting on a T4/T3 combo drug, I don’t have high RT3 anymore and I’m back to normal. I don’t have a diagnosis from when my thyroid was removed, but it was just after the birth of my son and was likely induced by the pregnancy and not autoimmune.
Karen
Will re-phrase…
Per Fern: IF your weight gain is due to low thyroid, then increased thyroid would help. However, IF one’s weight gain is NOT due to thyroid (high norepinephrine, low taurine, etc), then taking thyroid will not help in the slightest. There were at least three recent posters here that were complaining of how horrible they felt on T3 that they were given for weight loss and all three reported that it did NOT help them to lose weight. Nor, for that matter, has it helped me lose weight…and I do not have a thyroid and take only T3…and have, at times taken too much. Furthermore, on the Mary Sholmon Yahoo Thyroid Group, many there (some years back now), stated the same…that it wasn’t until calories reached 2,000 that any weight loss was experienced by anyone.
To Karen, that is very interesting that getting the T4/T3 balanced reduced your RT3…thanks for sharing that. If you are taking a desiccated thyroid, my suspicions are that there is something else in it that you needed…and the lack thereof may be what resulted in the RT3.
I will continue to disagree that in a body that is working correctly you cannot induce a hyper-thyroid state. In a body that is NOT-working correctly…you could. However, and just a random guess…that you two could not get together and figure out *what* precisely was not-working correctly…so as to know *who* should and should-not be given T3 to help them lose weight. And by that, I mean those who do not have a thyroid issue…and just simply want a weight loss drug (which is what you are avocating for…to which I am opposed)…and I will defer back to the recent previous three posters who had no thyroid issue, were given T3 for weight loss, and who did not recieve the promised weight loss benefits…and became very sick to boot.
Faith, I don’t believe anyone should be given T3 to loose weight. I also don’t believe that MOST people should be given ONLY T3 at all. I took it for a year and felt like crap the whole time. Know many other people who feel the same way.
Karen,
Just goes to show you how everyone is a different (as I only feel ok on T3 only). By the by, this conversation is taking place amid another conversation…a person named Marco (see above) was upset because he/she felt there was some misinformation being spread. Although Marco was connecting (at least) two different bodies of information, I elected to respond to the part which may have come from me. Fern then jumped in on what I was saying (that T3 should not be given for weight loss)…and then you jumped in. Unfortunately, the heart/spirit of the original conversation was then lost. Does Fern agree with Marco that T3 should be given for weight loss only? I doubt it, and I doubt she realizes that this is what she has been defending (despite my trying to point that out). You may appreciate reading the whole conversation to see how it is getting off-point. Also, it goes on own further below your comments.
Bottom line is, imho, T3 should NOT be used for weight loss…that is not what it is for and it has many more negative consequences to one’s health. Agree or disagree. Marco says yes they should be…Fern seems to agree with Marco that T3 is a wonderful weight loss pill…Karen does not, nor do I…seems we (lol) have a tie. 😉
Faith,
You said: “Fern seems to agree with Marco that T3 is a wonderful weight loss pill” … did you even READ what I really said?
I said: “Faith, I think you misunderstood what Marco was saying. I don’t think he was recommending taking T3 in order to lose weight…” I think YOU misunderstood Marco, now you MISUNDERSTAND me. I DO NOT and HAVE NOT AGREED that “T3 is a wonderful weight loss pill” Marco did NOT say that, either!
If you can NOT even understand this simple language how can you POSSIBLY understand all the medical “information” that you try to pass along on this site?
Karen, I think you’re right about most people. Most people who have low thyroid function seem to do very well on L-T4.
Faith,
I read the posts of Elizabeth May who said “We started with only cytomel and gradually increased to 10mcg in the am and 10 mcg in the late afternoon. We added in 25 mcg of synthroid in early 2013.” I understood that the reason they gave her thyroid supplements was due to low thyroid levels and didn’t see anything mentioned about being given T3 “for weight loss.”
Laura said, “…the fact that I had unexpectedly, with no apparent reason, gained 20 pounds” was what led her to see the naturopath, but that is different than being a healthy person seeking to lose weight. It is a symptom of low thyroid to have unexpected weight gain.
I agree that we shouldn’t accept all the “information” we find on the internet, because some or even most of it might be misinformation. I always consider the source. One of the best sources is the National Center for Biotechnology Information (NCBI) the National Library of Medicine (NLM), at the National Institute of Health (NIH).
Here is a basic chapter on Thyroid Disease:
http://www.ncbi.nlm.nih.gov/books/NBK241/
I actually found it while searching for “thyroid atrophy” since you had mentioned it, Faith. (Thanks.)
It says, “There is an exception to this, [how TSH usually rises in response to low FT4] however. In autoimmune thyroiditis, blocking antibodies to the TSH receptors on thyroid cells may prevent TSH stimulation and thyroid atrophy may occur even in primary hypothyroidism.” (This is not talking about thyroid atrophy resulting from taking L-T3, but because of the autoimmune response.)
It also says, “Tests for antithyroglobulin and antimicrosomal antibodies assist in the identification of patients with autoimmune thyroiditis. Antibodies to TSH receptors are now clinically available, both TSH-like thyroid stimulating antibodies (TSI) and thyroid blocking immunoglobulins to diagnose Graves’ disease and atrophic hypothyroidism.”
I believe this is why one of my endocrinologists said that the antibodies associated with the autoimmune hypothyroidism would “destroy the thyroid.”
Did I mention that I have both the TSI, and the antibodies that signal Hashimoto’s Thyroiditis? (AI hypothyroidism).
There is one other thing I think you should realize: I NEVER said I think people should take HIGH doses of L-T3. As far as I know, NO ONE has ever taken LOWER doses of L-T3 as I have. When I started taking L-T3 daily, I started with an eighth of a 5 mcg pill. To get it that small I had to first cut it in quarters then turn the quarter on its side to split it one more time.
Naturally, if a doctor prescribes it, having found the need for it in testing, then yes. Follow the doctor’s advice or get a second opinion elsewhere.
Fern, I am speaking to conversations outside this one..but either way. YES, that IS what Marco is saying…and what you ARE defending. Which is fine…as it is fine that I disagree. We are unlikely to come to an agreement on this subject…and you are equally unlikely to see my point.
My point, to you, being that you had weight gain because of low thyroid (most people have weight gain for numerous other reasons…like high norepinephrine, insulin issues, low taurine, etc…which would NOT respond to thyroid hormone for weight loss). Your situation was corrected because you added what was missing…and because you created a disease state. That in no way means that if you give a perfectly healthy person who doesnt have thyroid issues T3 (and not everything is an L-) that you could or would successfully create a disease state. Furthermore, for all the people in the world who are overweight for reasons other than thyroid (which is most of them), adding thyroid hormone is not only useless, it is dangerous. Now, will you acknowledge that people are overweight for other reasons than thyroid? Will you realize that just because you responded one way that not everyone responds as you do? Will you acknowledge (even to yourself) that you created a disease state? I doubt it.
Furthermore, my ire is with the practioners who do NOT test…but merely give every single fatigued patient thyroid hormone…usually dried feeder pig thyroid hormone under the guise that it is “natural.” They do this because this is what people who read the internet seem to want (and are willing to buy)…rather than use their medical knowledge. So we are talking about doctors and naturopaths who do in fact rx it without lab tests.
Faith, what Marco said was, “Faith –… you completely misinterpreted the issue with respect to weight loss. There are ample studies that show T3 does, in fact, induce lipolysis (fat loss) which I thought I made very clear in my post, …although T3 used in high amounts can be very catabolic to muscle tissue which would then result in weight loss. I agree it should NOT be used as a “weight loss aid” AND I never implied it should be administered to euthyroid (normal thyroid) patients. Those that take it as a fat-loss aid are taking it at their own risk.”
That is what I agree with: that YOU misunderstand; and that EVEN THOUGH T3 can cause weight loss, it is NOT healthy weight loss if it is due to free T3 being increased above the normal range, nor should it (liothyronine, Cytomel, aka L-T3) be given to euthyroid patients to push their levels over the top of the normal range. I would like to emphasize what Marco said in conclusion: “THOSE THAT TAKE IT AS A FAT-LOSS AID ARE TAKING IT AT THEIR OWN RISK.”
Essentially, I thought that was the gist of your own argument and wherein WE DO AGREE. If you don’t agree, then maybe I really don’t understand you either.
Faith, you also asked, “Will you acknowledge (even to yourself) that you created a disease state? I doubt it.”
NO, I will NOT acknowledge that I created a disease state by taking Liothyronine. It is simply NOT TRUE. I have only been taking L-T3 (please accept that this is shorthand for saying “supplemental T3”)–and, I am saying, I have only been taking L-T3 for three months so far. Also, I have ONLY ever taken LESS THAN 5 mcg in a day. I have NEVER taken as much as 5 mcg in a day, and certainly NEVER more than that. Is that clear?
I certainly hope you could understand me this time. If not, I give up.:P
Faith, I forgot to mention that I DO acknowledge there are other reasons for weight loss. My husband lost about 40 pounds of water-weight during his one week stay in the hospital under the care of cardiologists. They used diuretics on him to get rid of the excess fluid he apparently gained while he couldn’t eat due to nausea–and while doctors had no clue that his problem was cardiomyopathy, or congestive heart failure (CHF.)
There are certainly other disorders that can cause weight loss, like Cancer.
Maybe people can actually lose weight by trying, even here in America where an abundance of food is always at our fingertips…I am being a little facetious here…but that is outside my range of experience.
In any case, I don’t think thyroid supplements will necessarily help with weight loss, but that it is necessary for the thyroid to be functioning properly [or proper supplementation if the thyroid has been destroyed] to have healthy weight loss. And it’s important to follow a very healthy diet as well. I don’t think diets are very healthy if they, like the paleo diet, are restricting some very healthy foods. Exercise is also important to healthy weight loss. That is my opinion. If you don’t like it, that’s fine with me.
Fern,
It sounds like you are trying to beat me over the head until I agree with you…we don’t agree on some thing…and that is ok…so leave it.
And, you DID induce a disease state because you caused your TSH to go low, below range. TSH is the pituitary’s request for thyroid hormone…and it IS what doctors and research studies look at to determine hypo/hyper thyroid state. Your reduction of your TSH DOES (like it or not) show that you affirmatively induced a “hyper-thyroid” state…aka, a disease state. <– THIS is actually what we (or what I) was challenging because my stance is that this would not-have happened in a otherwise healthy body.
You can disagree with that all you want, however, that is how doctors and other research professionals will look at it. The studies cited (only one having to do with actual thyroid hormone as opposed to thyroid supressors), looked only at TSH over the 56 days (again, leg muscles are unlikely to atrophy in 56 days).
Faith,
I know that TSH is the main thing “doctors and research studies look at to determine hypo/hyper thyroid state,” but there are exceptions such as the one I quoted from the chapter on the thyroid from the medical text.
Now, I just want to know where you got the idea that anything I have deliberately done has suppressed my TSH below the normal range? And when did it happen? If I gave you that idea in any of my other comments I would like to know which one. In any case, it didn’t happen due to taking the L-T3, because my TSH test since then was closer to the middle of the range than before. My taking L-T3 obviously could NOT have caused the TSH suppression 5 years retroactively!
If you want to live in your own private mixed up world of understanding, then I will leave you alone, but please don’t use me for an example by misquoting what I say.
PS…your first link is a study about thyroid-supression therapy…usually given to those who have thyroid auto-immune. This is different than giving thyroid hormone. Apples and oranges.
Your second study caps out at 56 days taking thyroid hormone. So…from that your best argument from this study is that you feel it is safe to take unnecessary T3 (for weight loss) for 2 months.
Furthermore, this study only evaluated their TSH levels…which is the pituitary not the thyroid. So while their pituitary recovered…this has no bearing on their thyroid. This has far more bearing on their hypothalamus.
Good luck with that.
Sorry, hit to post before I included this:
http://edrv.endojournals.org/content/13/3/596.short
Although about something a bit different…taking excess thyroid hormone (T3) in order to induce a hyper-thyroid state (in order to lose weight, as you say)…would be recognized as happen when the pituitary’s TSH is supressed…meaning that the body clearly does not want any more thyroid hormone as it has too much already. While we will disagree on your ability to successfully do this (as I contend that the liver would clear it), eiher way…suppressed TSH…
…they say: “isolated TSH deficiency causes hypothyroidism and thyroid atrophy.”
Likewise, anyone even thinking of taking T3 or other thyroid hormone (while they have a normally functioning thyroid, should have their Alkaline Phosphatase checked regulatly to ensure that they are not-demineralizing their bones. One of the causes is hyper-thyroidism:
http://en.wikipedia.org/wiki/Elevated_alkaline_phosphatase
Would someone mind looking at my numbers and giving an opinion please?
Thank you!!
TSH Result 1.370 Range 0.270-4.200
Thyroxine (T4) Result 7.7 Range 4.5-12.0
T3, Free (FT3) Result 2.40 LO Range 2.50-4.30
Thyroxine, Free (FT4) Result 1.46 Range .83-1.62
T3 (Thyroxine), Total Result 82 Range 80-200
T3, Reverse (RT3) (30) Result 25.3 Range 9.0-27.0
The same bloodwork showed the Celiac gene is active. I am also
Low Iron, and Low Insulin, and High Vitamin A and High LipoProtein-a.
My Dr. said that after seeing Anti-Endomysial coming in High 1:10, that it
makes sense that some other vitamins (B’s etc.) are on the Low side,
as this us how other patients she sees with Celiac present (as in presenting
with similar symptoms) as well.
Should I be treated with T3 or Iodine (Iosol per my Dr.)?
An Holistic MD prescribed Amour .5 grain last year, when my numbers were worse,
but I wasn’t comfortable taking it at the time. Should I try it??
Your TSH (the pituitary’s request for thyroid hormone) is low-normal which is ideal. Your T4 and FT4 are high-normal which is ideal. Your TT3 is normal (most drs would not treat…or not-know exactly how to treat). Your RT3 is low-normal which is absolutely GREAT! So you are probably not-ill or starving yourself…perfect, perfect. That said, your FT3 is low. Taking T3 will not necessarily increase your Free T3….because free means “unbound to a carrier protein”…and you and your dr has very little, if any control over that. Additionally, your thyroid makes primarily T4…so it would appear to be functioning perfectly…it is the (primarily) the liver that converts the T4 to T3 (not the thyroid)…however, you ARE converting…just not much. Normally, this would suggest an over conversion to RT3…but you are not doing that either. My guess is that your body levels have bee set low for a reason that is probably not-known to you at the moment.
I am NOT saying to not-take T3…so please don’t hear that…am simply trying to educate on the other side of taking T3 that may not be so readily available or understood on the internet…as I am a firm believer in truly informed choices.
Realize that taking T3 (or any thyroid hormone), will not necessarily increase your levels. Your body (hypothalamus) sets your levels…and the rest of your body works to maintain those levels. Primarily, your liver (providing that it is working correctly) will filter any excess out of your blood and mark for deletion. ONLY if your liver is not-working would your levels rise…and this is a critical distinction that most on the internet and most providers fail miserably to recognize.
In addition, any thyroid hormone you take (while you have a normally functioning thyroid) will decrease your thyroid’s out-put of thyroid hormone (in order to maintain the body’s set point). What usually happens in these situations is that seemingly knowing, but not truly knowing providers would increase your dose of thyroid hormone…which then results in your thyroid making even less. This viscious cycle leads to atrophy of the thyroid gland and gland death and your then forever dependence on inferior hormone replacement. Like them like they do, there is no thyroid hormone replacement that is good or perfect…the pharmaceuticals do the best they can…but neither feeder pigs nor science has been able to duplicate nature.
Likewise, I would (strongly suggest that you) avoid the iodine UNLESS you have a test proving conclusively that you are in absolute fact low. Even then, I would be super critical of the tests…because the ONLY way that iodine gets in your cells is on the back of a thyroid hormone…your low (if you were low) would be attributable to your low FT3 than low iodine. Indeed, that you are even making thyroid hormone (T4), and you are indeed making plenty, shows definitively that you do indeed have enough iodine.
What few fail to understand is that T4 means 1 molecule thyroid hormone and 4 molecules bio-available iodine. The liver (via an enzyme) liberates a single iodine molecule from T4 to make T3.
For what it’s worth, the thyroid stores iodine…and those who have been raised in the USA, have eaten table salt or anything processed then you already likely have a lifetime store of it. I have yet to see a doctor stick a needle in someone’s thyroid in order to test iodine stores (which is where he body stores it)…so please realize that all the hype it is given is purely hypothesis as opposed to fact.
Here’s the education:
No iodine that you eat or take can be used by the body (as it is not in a form that is bio-available)…in order to convert it into a form that is bio-available, the thyroid has to make and enzyme called Thyroperoxidase or TPO to convert the iodine you eat or take. This is, by the way, the single main target of the immune attacks in thyroid auto-immune (TPO Ab). Next, the thyroid has to make a protein called, Thyroglobulin or TG to bind that now bio-available iodine onto the back of a thyroid hormone. Also, TG is the second main target of immune attack in thyroid auto-immune (TG Ab). So, until thyroid auto-immune has been conclusively ruled out – NO thyroid patient should arbitrarially take iodine – ever. Sadly, this is pure internet stuff…and even more sadly some practioners just do what people on the internet are wanting (selling what sells) rather than using their medical education to realize that this is dangerous. This is second only in danger to practioners who arbitrarially give people thyroid hormone who don’t need it. So, buyer beware.
Hope that helps. Again, I am not telling you not-to-take T3 (I am telling you not to take iodine until you are absolutely sure…and that I see no cause for iodine given your numbers)…just trying to inform you on the other side of it. You will have to decide for yourself. Personally, I would look into other reasons your body may be down-regulating itself…because this may be the begining of a process.
Hi Faith
Where do you get your info or research that taking thyroid hormones can lead to permanent atrophy and death of the thyroid gland? Also, I like the way that you want to research things via medical facts and not propaganda, so I was wondering if you ever have read the work of Dr Raymond Peat PhD ? I think you will learn a lot.
Hi Faith,
Trish here again 🙂
Thank you for your detailed reply. I should have mentioned in my original post that I have digestive issues, though as yet no official diagnosis. I wasn’t born celiac as far as I know, but have had digestive issues since I was little, and found out this year that the celiac gene is active. I was always getting sore infections as a child and then put on penicillin. Late teens/early twenties different infections. Thirties, mostly ear infections. Forties various female infections. Hence one to two antibiotics a year. No surprise I have low immunity markers and a leaky gut, plus food sensitivities. So mostly GI distress.
Over the years I started sensing energy issues. About 7 years ago, I found a local holistic MD and he did sensitive thyroid testing where I received an injection and then had blood drawn to measure thyroid antibodies. I had this done twice, three years apart. Both times he said I was hypothyroid. But every internal medicine physician or endocrinologist that I saw did a blood test and said there was no thyroid issue.
Anyway, with all my symptoms, I have numerous Rx’s and recommended supplements, but nothing that seemed like an integrated health plan.
I saw a different holistic MD this summer and that’s where I got those thyroid numbers I posted previously. Well, I since had cortisol saliva testing done. Results are low a.m. cortisol, in range noon cortisol, and elevated H afternoon and nighttime cortisol, and wacky neurotransmitter results, too. I’m low Serotonin, and high GABA, Glycine, Glutamate, Dopamine, Norepinephrine, and Epinephrine. Histamine and PEA ate in range.
I read Serotonin is created in the gut. I’ve been given supplements to raise serotonin, and some calming supplements too to bring down the higher cortisol levels. I fall asleep well, probably from the daily GI pains and trying to push through fatigue so I can fix myself dinner. Thing is, I don’t have anxiety. Stress from not feeling well and being unable to work, yes. The supps. make my body crash but mynmind isvawake. I still wake upmevery few hours from GI symptomd. I need energy(!) not calming supps. I found this article that suggests treating low-morning-only cortisol results with T3 (the T3 Circadian Method). Here’s the article: http://www.stopthethyroidmadness.com/t3-circadian-method-for-adrenals/
It does recommend addressing numerous other issues, such as Inflammation (check), and female hormones (low progesterone, check check). But I was wondering if I should give the NDT a try? I feel like I have digestive issues that are messing with my hormones. But could it be the hormones messing with digestion? I did a stool test though my gastroenterologist, and another three day stool analysis through Genova Diagnostics. I have low good bacteria. No parasites, candida, or bad bacteria. (Can that even be possible???!)
I need energy to go back to work, and it’s been 14 months of being like this.
Thanks for any input!
Happy holidays!
Trish
Holy typos!!
Sore infections as a child should read sore throat/throat infections as a child. Various other typos are mostly added consonants due to my typing on a iPad keyboard. Sorry!
Trish,
OMGosh…do many parts of your story sound soooo much like mine!!!
Ok, I see two separate issues here…and (am guessing) think you still see them as the same issue(??). One is the low energy and feeling like you are not getting or making use of the thyroid hormone you have (among other things)…and the other is, ways in which to treat your thyroid needs.
First let me respond to ways in which to treat your thyroid needs. For whatever you are taking (T4 or T3 or both), the simple lab tests can tell you readily if you are absorbing them or not. I will assume that you are since the other doctors are telling you that there is no issue. It is not that there is no issue…just that you are absorbing what you are taking (which is pretty much all those tests are telling you at this point anyways). So, then is only the question of *what* thyroid replacement you care to take…and/or don’t seem to react to…which is a much bigger (trickier and more complex) issue than it appears on the surface. And let me say, that NO thyroid replacement on the market is perfect…every last one has drawbacks.
On the subject of (NDT), a number of people swear it has helped their lives to no end…and I am sure it has, however, I have open questions as to why that might be (which are not what people usually think about when they think of NDT). So, that said, while many people speak positively about NDT and while it, in theory, can sound like a good thing, I have some different/competing thoughts on the matter that I believe bear considering before buying totally into the hype. First and foremost, it is not near as “natural” as they lead you to believe. NDT comes from commercial slaughter animals (not organic!)…and, for example, Armour Thyroid comes from Armour pigs…the ones used to make Armour Hotdogs. When people think of “going natural” they rarely think that means eating Armour Hotdogs. Secondly, slaughter animals MUST BE slaughtered prior to two years of age (by law) to prevent mad cow (which doesn’t show up until after age two)…however, slaughter animals are routinely slaughtered just before one and a half years due to being given ENDOCRINE HORMONE OVERDOSES to grow them “bigger, fatter, faster”…and I don’t know about you (or anyone else), but it makes me more than a little eww to even think about drying out one of those ENDOCRINE glands and then ingesting it…but that is just me. Third, not only do supplies periodically run dry…but Armour et al., often use fillers (like soy) that suppress thyroid function. As well, and something I don’t ever hear being discussed, but know is true of pancreatic enzymes from pigs, is that one can catch disease from it (warning on pancreatic enzyme label)…think because it cannot be cooked/pasturized and wonder if the same is true of dried thyroid from pigs.
Indeed, the various fillers, and the frequencies of manufacturers changing them (which is true of most all thyroid hormone replacements) MAY account for why people sometimes feel as though they are not getting any even on the same doses. Just a side thought.
My suspicion is that those who are helped by NDT actually need something else other than thyroid hormone that may also be in the dried gland…such as another endocrine hormone. If I had it narrow down more specifically, I would lean towards growth hormone. As growth hormone is mentioned in a lot of the genetic literature, if I fleshed this out even farther, I would venture towards subtle genetic defects now causing one’s growth hormone to no longer process was well as before. Not like a deficiency per se, more like how it is able to be used. That said, I haven’t wandered down that trail (yet)…those are just my suspicions. Like them, you may need those extras too? Is hard to say.
Normally, in our bodies, the thyroid “releases” hormone rather than hang onto it…and I suspect that it is the same for pigs…so what is in the NDT is NOT a perfect match for what floats about in a healthy body. As well, pigs are NOT human…and the difference of which in the hormone, in my view, is perhaps even more different than synthetic is from what we make (ie rendering the synthetic more close to what we make that the dried pig gland)…again, just my thought and view on the subject.
In the end, there is no “right” choice…only what you choose and how it works for you. I share my views only in that they differ, and thus give more food for consideration in making choices for yourself. After all, better to make fully-informed choices.
contined…
Trish, continued from last post…
All that said, what you write about your energy and not feeling like you are getting enough thyroid some days sounds very similar to what I have been experiencing as well, and I share your feelings on a desire to understand and know what is wrong. I have written about it here a few times before about the answers I have been finding. Like you, I take thyroid hormone (although I take T3 only)…and some days I just don’t feel like I am getting enough. Thankfully I can adjust my dose throughout the day (as I take multiple times a day), but this does not seem to help much on those days or at those times. For a long time I have tried to comfort myself in that sometimes our bodies just need more than others, although this never seemed to fit just right.
Recently, for reasons other than thyroid, I did the genetic testing by 23andMe.com…and, per my doctor, tried a number of the various supplements that the so-called experts on the subject say to take (ie take methylfolate if defect in the MTHFR gene), only these all made me worse. So one day I asked my doctor to just test all the different things that the report said the defects affected to see what, if anything, was truly being affected. This is where I got more answers than I have ever gotten from the medical world about what was really going on with me. For starters, I wasn’t making taurine very well…and supping that turned my health around. I went from using a walker (and needing a wheelchair) to now walking without a cane. It also showed me that I make too much glutamate and not enough GABA, and with the rx Baclofen (which works where even phenylated GABA does not).
But, perhaps most telling, and you sound like you have done some genetic testing as well (and if you did 23andMe as well, you might want to browse your raw data per this too), is that I have numerous defects in my thyroid B receptor…as well as the Vit D receptor…which I now know to be the same receptor. This is more likely to be the cause of why sometimes it feels like we are not getting enough…again, just my thoughts on the subject. Even so, NO ONE knows what to do about the defects in the receptor…at least not yet.
As well, the body is supremely complex…and much more so than a lot of stuff makes it seem. Not sure if you have found your way to the various cycle charts (like the methyl cycle). That lab testing I did has revealed, fairly precisely, where the breakdowns are occurring. You mentioned the high neurotransmitters, so you have an idea here what I am pointing to. For example, I have high dopamine (despite symptoms of low), high norepinephrine (despite symptoms of low), but low epinephrine…(for those who might not have known, dopamine makes norepinephrine which then makes epinephrine)…it is as if my body is doing all it can to make the things it needs. Another example, high cysteine…but low taurine and low glutathione. As well, outside of the methyl cycle, cysteine and glutamate (both high in me) make glutathione which is low…again, as if my body is doing all it can to make the stuff it needs.
The last couple things we have been finding out directly affect mitochondria and energy production…which is a better guess than everything so far of why I continue to experience profound fatigue.
I don’t know very much about this stuff, and no more than to say that I have scratched the surface, but I have learned enough to say that most of what is out there on this subject may not be right at all…and why I recommend that people get the lab panel done BEFORE just taking the supplements the experts say to take. Granted, they are now making disclaimers, but still it is not as simple as just taking methyl-folate and then just saying that some people have issues with too many methyls. In my view, this is exactly the kind of stuff they should have known before telling people what to take…but that is just my view as someone that is a bit saddened over the loss of livelihood from supps that should never have been given. As well, there is also the very simple logic that IF (again for example) the MTHFR gene and enzyme were the ONLY ones to add a methyl group onto folate (insert any other gene/enzyme combo), then with a double mutation…one would either be dead by now…or…there is another gene/enzyme that does it that they don’t know about yet, hence the testing to see what, if anything, was affected.
Anyways, how that helps Trish. 🙂
Dear Faith,
Thank you yet again for taking the time to reply and with such amazing detail.
Unfortunately I feel a bit lost. The world of everything energy related is huge as is the seemingly endless information on everything thyroid.
I should have explained better…I actually am not taking any medications. I have Armour .5 grain, Hydrocortisone 5 mg, Pregnenelone, and compound pharmacy Progesterone, from different doctors, and some with or without bloodwork. The story is way too long to go into, but the short version is I have been handed Rx’s without being told when and how to take. After researching, I got so confused bc adrenal and thyroid meds don’t seem at all like they can be ‘casually taken’. For example, I read hydrocortisone needs to be dosed per the 4x a day readings from saliva testing. I didnt have the saliva testing at the time. I was just given ‘take one 5 mg’ based on a blood draw at the doctors office. Not non-fasting, and it probably was an afternoon blood draw. (Only recently did I finally have the saliva testing done through an ND.). Next doctor, more bloodwork, told to take iodine.
Also, any genetic testing was thrown in with the entire blood work ordered. Found out piecemeal that the Celiac gene is active, as well as the MTHFR mutation.
I’m out of time and money and now want to self dose. Can I take the hydrocortisone in the morning since only my a.m. cortisol is low? Can I take Armour as per the other article I put in my previous post about Armour helping folks with low only morning cortisol like me? The article I found today reads that if there is an adrenal problem, taking Armour may put a further drain on the adrenals.
http://eastwesthealing.com/the-thyroid-and-adrenal-relationship/
I need to get back to work (over a year now) and, once I start working, I will then have insurance, and hopefully money to see a functional medicine specialist (out-of-network in NYC), and then can and will continue the journey. But I need the energy soon, like now. Been saying this for 15 months. Losing my grip.
Trish, if you are questioning what your doctor is doing, why don’t you simply go elsewhere for a second opinion? Whatever you do, though, I hope you will let us know how it is working or what is happening. I am really interested and hope things work out. 🙂
Hi Fern,
Sorry for not replying previously. Thank you for your concern 🙂
I have tried so many doctors. I think the symptoms overwhelm them.
I recently found an OBGYN, of all people, that wants to see my complete medical history to try to figure out what’s wrong and causing my health issues. But my COBRA ran out at 12/31. If I can get enough energy to work, I will either have insurance or the money to pay to see her. Hence the reason why I’m trying to see if I can self treat.
I know it can be all very confusing when you have different instructions from different doctors. It sounds like your OB/gyn really wants to help, though.
If you have the prescriptions already I would at least use the compounded bio-identical progesterone. I have used that, and know it can help the thyroid and give you energy.
Another thing that helps me is to do something that pushes the limit of my energy… and I get more energy. I feel so tired sometimes, but I do feel better when I fight it.
You have not been prescribed cytomel (LT3), have you? That has helped me, too, but only when starting with a very small dose and building up. 5 mcg is the smallest pill made but I had to take 1/8 (cutting it into quarters and turning the quarters on their sides to slice the little fat pill one more time.)
If you have celiac and especially if you are much more limited in what you can eat and digest, you need to be aware and even more careful to be sure you are getting a balanced diet. The thyroid doesn’t function well unless it gets adequate nutrition, and protein isn’t adequately supplied by pills.
Do probiotics help your digestion?
Wondering if anyone can give me some advice. I’ve posted here before but in a nutshell I was diagnosed with hypothyroidism approximately a year ago. My Free t3 was low, my Free t4 was low, my TSH was slightly elevated and my RT3 was in the upper end of normal.
FT3: 2.0 (range 2.3 – 4.2 pg/mL)
FT4: 1.0 (range .8 – 1.8 ng/dL)
Total T3:116 (range 76 – 181 ng/dL)
Reverse T3: 30 (range 11-32 ng/dL)
Thyroglobulin Antibodies: <20 (range <20 IU/mL)
Thyroid Peroxidase Antibodies: <10 (range <35 IU/mL)
TSH: 2.10 mIU/L (range 0.40 – 4.50)
Ferritin: 24 (range 10-154 ng/mL)
Vitamin D 47 (30-100)
Additionally I had some Gut problems that I have continued to work on.
Over the past year I have struggled and not really felt 100% better. We started with only cytomel and gradually increased to 10mcg in the am and 10 mcg in the late afternoon. We added in 25 mcg of synthroid in early 2013. Gasto symptoms continued, then my period stopped, my hair started falling out in a bitemporal pattern, my blood pressure dropped to 90/60 consistently. I was previously 120/80. My last labs showed that my t4 was low and my TSH was suppressed. At this point I switched doctors.
My new doctore tested for adrenal fatigue. The tests came back showing cortisol disregulation and low pregnenolone and low dhea. He started me on pregnenolone 30 mg a day, licorice root 900 mg a day, and a few other things to support the liver and the gut. I've been on this new protocol for about 3 weeks and have been feeling better.
He suggested that there was probably nothing wrong with my thyroid and suggested weaning me from T3 therapy. I started this last week by dropping my afternoon dose to 5 mcg. This week I dropped my morning dose to 5 mcg. Yesterday I started experiencing very strange symptoms. Cold feet combined with a very jittery feeling almost hyper. I feel like am about to jump out of my skin. Additionally I am certain that I am gaining weight and my hair is starting to fall out again.
This whole experience is nothing short of terrifying. Has anyway had withdrawl symptoms from weaning off cytomel? Has anyone experienced this type of hairloss (bitemporal and frontal).
Any suggestions are welcome. I don't want to switch doctors again but I'm pretty much at my wits end.
Thanks.
Elizabeth May, first of all, I am really sorry that you are experiencing all this. 🙁 I can only tell you from what I have learned along the way, often in hindsight. When one is sick…and when it is not immediately obvious what one is sick with…we look for any number that is off. Indeed, they are the only clue we have. And it seems so simple: thyroid is low, that must be it, take more thyroid and expect to feel better…only it often does not result in felling better. IF it really were just the thyroid…then one cause can be that man has not yet mimicked human thyroid hormone and all products on the market are inferior to what one makes. However, at least to me, it sounds reasonably possible that your thyroid is not the problem…but rather a symptom of the problem…which is what I have learned for my own self after the fact.
Chronic illness (illness that you have for lengthy period of time) will result in the body setting thyroid levels lower…and this is one of those things that I cannot stress enough and am rather baffled that the medical community as a whole seems ambivalent about. To them, they see symptom (low thyroid) they rx a med to correct it…without ever once ever wondering why it was low to begin with. Integrative doctors do wonder this…and do try to get to the bottom of what is wrong and fix that. Unfortunately, the medical profession is also woefully behind and lacking in information about most illnesses that are making people somewhat sick to really very sick…they just shrug their shoulders and say that they don’t know. Which leaves you right where you are, trying to figure out what has gone wrong.
The dr trying to remove the T3 is doing so not because it is wise or good or needed…but because T3 is NOT the so-called, “Standard of Care” for thyroid…which was, incidentally, written by Synthroid (and IS good, but only for 5% of thyroid patients who have true primary hypothyroidism…meaning, that the thyroid in isolation is failing for no other reason than it is failing and everything else is working ok). The high RT3 says you have a chronic underlying condition…be it starvation or illness…something that has been going on a while. The million dollar question is what…and for that you will need further testing.
For myself, I have late-stage Lyme disease…which is often missed (65% of confirmed Lyme cases are missed on the standard screening test according to the test makers)…and thus left untreated. In many, it can reside quietly in one only to show itself later in life when other things start going wrong. Low blood pressure is common to Lyme (and many other things), cold body temp (many are a degree or two colder than normal), tiredness or fatigue for no apparent reason. While some with Lyme have clear signs of infection-like symptoms…fever and aches…those with late stage Lyme often have subtler symptoms (at first). This is because Lyme turns off the part of the immune system that would attack it. There is a better test…well a few. There is one that tests the DNA of the Lyme (the PCR tests); there is a new culture test where they pull live Lyme spirochetes from you; and the Igenex screening test that can show you if you have been exposed.
There are countless other chronic illnesses that can play into lower levels of thyroid that have nothing to do with the thyroid.
Although my intention is not to advise you here, merely educate on what kinds of tests there are and what they can tell you…my hope is that you will read it in that fashion.
The ANA or FANA tests for autoimmune…as does the RA Factor…which can be very helpful to rule out. CRP or C-Reactive Protein and SED Rate tests for inflammation…one can have low-grade inflammation and not know it. CBC or Complete Blood Count with Differential…this will tell you if your white blood cells are too active (or not active enough) and which ones in particular…so as to tell the difference between things like allergies and bacteria. These can give you a general idea…and may help.
While I have not had any withdrawl symptoms when I switched from Cytomel to Synthroid per se, the fact is that (and I don’t have a thyroid) the thyroid and body stops making what you are taking…so yes, stopping COULD very well cause an issue. Finding a dr who with rx you T3…they are rare gems who get the thyroid better than most…you might try calling around and just asking what they feel about using T3…that may give you a sense of who you want to try seeing.
That said, the jittery feeling sounds very much like adrenal…and adrenaline…as in too much. I did a neuro-transmitter test that showed that I was not making enough adrenaline…and that, despite symptoms of low, I was making too much of adrenaline’s precursers, dopamine and norepinephrine. This led us back to the genetic test I had done (23andMe), that show some genetic defects with the genes that instruct the making of the enzymes that turn norepinephrine into epinephrine (also known as adrenaline). Yours fluctuating up and down sounds like how my stuff fluctuates. Anyways, the more I learn, the more I come to understand what a supremely complex system our body is…
Best of luck to you on your journey, sure hope you find your answers.
Hi Faith, Thanks again for your advice. I recently consulted with another Nautropath who said that he thinks that I might have a pituitary problem (not necessarily a tumor) but a signaling problem. He reviewed my initial lab results from before treatment and believes that my Thyroid was behaving the way it should but that something else is amiss. Can you recommend a test that might look at that?
they should measure your lactic acid. Elevation indicates the possibility of a pituitary tumor.
My third endocrinologist tested my pituitary by testing my FSH because I am post-menopausal. I don’t know what tests they would do for other people, but I know it is recommended to see an endocrinologist for such things. Still, the reason I have seen three of them is because they don’t seem very helpful especially where hypothyroidism is concerned.
Hi Elizabeth May, and you are welcome.
I wish I knew of the tests to run (because I need them myself), however, I do know that they are stim tests that are run by endocrine drs. Apparently they give you something and then continually check your response. I know that is not much, but hope that helps. Also look at the hypothalamus.
That said, and may be of interest to you, my own investigations into my health issues has turned in a slightly different direction. Assuming that the body is behaving normally…and is simply down-regulating itself per some illness that we do not know about. And, considering that most of those illnesses (when our symptoms finally reach actually injuring us status (that I don’t think anyone wants) so they can diagnose us with one of them), do not have great treatments or outcomes. Thus, assuming one wants to get to the true bottom of the malfunction and correct it…hopefully correcting the problems stemming from it (if at all possible). I began looking into genetics…but not in the way that many of us have been led to believe about them. Pretty much everything in our bodies are controled by enzymes…billions and billions of them…which make and un-make all the things we need for health and well being. It is still rather new, little is known…but it is recognized (even the cancer treatment centers are now advertising genomic testing and treatment plans).
The absolute cheapest way to get tested is the 23andMe.com site…it is $99 and gives you 14,000 pages of single spaced, 10pt font genes…well worth it. While it could be tested under insurance…your dr would need solid reasons to do so and that there are umpteen genes to test (all individual tests)…it is just so much easier to go this way. Plus, you do not need a doctor to order it.
After you get your results you can either search the genes specifically (for free) or run it through software (online)…some free some for charge…to get reports of what your particular body is doing…or not-doing.
When I did mine, the advice the main experts had…namely take the supplement after the defect (a common defect, the MTHFR enzyme that adds a methyl group onto folate to help you process it…they say to just take methyl-folate – and yes, you really can buy these supplements)…anyways, they made me worse. There are plenty of people on the internet self-dx’ing and advising people on this approach…as well as some of those experts (doctors no less) who have tons of information and videos. But as I said, like 5 pieces of their advice made me sick…soooo…what I had my doctor do was test every one of the functions that was porported to be affected by the gene defects to see what, if any, of mine were affected. What I found out was most interesting…and by far the most concrete evidence I have found to what to treat. In the end, I need very little (so far) and I am already feeling tons better.
For example, I found out that I am not turning cysteine into taurine…high levels of cysteine and very low taurine. Simply taking taurine (an amino acid that we make) has improved my condition tremendously…and it’s cheap ($6 for 2 months).
That said, fair warning…this will take you into uber confusing and heady areas of body function and medicine…although those with chronic, unsuccessfully resolved by doctors, illnesses almost need to go there at some point anyways. A good link, not sure if it will come up here, is Heartfixer’s Methyl Cycle Charts: http://www.heartfixer.com/AMRI-Nutrigenomics.htm
Anyways, my feeling is…and maybe you agree…that something else is causing the abnormal function. I came to that after they removed my thyroid and could not process the thyroid hormone well…and tested literally every known thyroid antibody test (including T3 Ab and T4 Ab) to no avail. My TSH is all over the place from extremely high (17) to less than 0…and bears no reflection to my hormone levels. Yet I have not been able to get further endocrine testing. I probably would have pursued it, but there were a number of other more pressing health issues over the last few years…and now that I am onto the genomics aspect…my hope is that treating the defects will fix everything else.
Hope that helps.
Got my most recent lab results back and I’m very confused by my doctors recommendations.
My lab values are as follows:
TSH .33L (.40-4.50)
FT4 .8 (0.8 – 1.8)
FT3 3.1 (2.3 – 4.2)
Total T3 92 (76-181)
T3 Uptake 28 (22-35)
RT3 11 (8-25)
Negative Antibodies
Ferritin 43 (10-232)
I assumed that he would increase my T4 but instead he recommended increasing my T3 dosage by 5mcg.
I am currently taking 10 mcg cytomel 2X daily and 50 mcg Snythroid in the am.
I questioned the nurse and she said that the FT4 was within their reference range and that they felt that the FT3 and Total T3 was low.
Any thoughts? Thanks!
A lot of sites recommend the T3 level be in the upper third of the range i.e. more like 3.7 rather than 3.1. Some sites are mentioning T4 conversion issues and pooling. Maybe your doc is hedging their bets. Faith might have some useful interpretation of all this.
As I read all of these messages with doctors experimenting with various levels of T4 and T3, and using Cytomel I am so disturbed by the medical field. As I stated in a previous post, when my thyroid started going down in the early 90’s, the doctor put me on synthroid. I went downhill from there, gaining weight, depressed, etc. The doctor was VERY pleased by the blood work but he NEVER looked at how poor the patient was doing! He added more medications to correct the misapplication and negative effects of the synthroid.
I finally fired the doctor and went to an old country doctor who subscribed to the Wilson’s treatment. Basically he removed all Synthroid and added COMPOUNDED Cytomel. Compounding is VERY critical because the working life of Cytomel itself is very short. Only 3 to 4 hours if it’s not compounded and your body goes on a roll a coaster. IT gives you a boost when you take it, then let’s you down for the rest of the day. This unstable T3 treatment can make you feel horrible. My thyroid no longer works. My blood results shows my T4 level low. It’s actually 0! That’s right, 0. My T3 is in the high normal range and I feel great and a highly performing person. I’ve been on this treatment for 15 years and at 61 years old, feel like I’m still in my 30s. No depression, no weight problems. So after 15years of a T4 level of 0, I’d like SOMEONE to explain to me why the human body needs T4 at all??? I’m living proof the body doesn’t need it. Doctors?? I’m waiting for an answer….
We are all different, Richard. I had my thyroid out in the 70’s when I was 19. Went on Armour and did well for 15 or so years. Then, moved and my new doc said Armour was poison and put me on Synthroid. It was a slow downhill spiral after that. Took matters into my own hands, tried T3 only (Cytomel) several times to lower RT3. Felt like crap. Each time I went back to Erfa and felt really good. I’m extremely active, happy and fully functioning too.
Hi Richrd,
As someone also on T3 only treatment, I likewise do not see a need, per se, for T4…however, am not near as quick to rule it out. That said, T4 is primarily a storeage vehicle to help the hormone last longer in the body. No receptor takes T4, so in that sense is unneeded.
That said, your story highlights something I have said all along…and that is that too much supplementing (if and when a thyroid works) will atrophy and kill the thyroid. As yours is now zero, it would seem to back this up.
I take regular Cytomel…I take it 10x a day…and do not feel any great up or down as a dr at that Mayo, and now you, say I would. Instead, I feel rather steady…even if I am out and miss doses I have no lag feeling. As well, the schedula allows me to take less when I feel I am getting too much (I get sleepy soon after taking)…or take more if I get too little (I am weepy).
As I have a chronic illness, I make way too much RT3, and by taking T3 only I feel it is a real godsend.
That said, certain brands of Cytomel make me ill.
Hi Elizabeth May,
Your TSH is low. TSH is the pituitary’s request for thyoid hormone. Being low suggests that your body does NOT want any more thyroid hormone. Which is my guess why your dr is not increasing your T4 dose.
That said, and as others mentioned, your T3 is in the lower end of the range…which suggests (at least to me) a possible conversion issue. As your RT3 is low, that is not the issue. Conversion takes place primarily in the liver. However, there is a long time member in the Mary S Yahoo group who feels incredibly sick when your T3 is in the upper range, and so must keep hers lower. Also, and something I hadn’t known but bears repeating, excess T3 can contribute to cancer.
Regarding dosing T3, and determining what level works best for you, is to go by how you feel. If you feel great at a lower level then that is what your body actually wants…even if people on the internet theorize otherwise. 🙂
Hope that helps,
Faith
your symptoms sound similar to mine, and that weird jittery/hyper feeling is most likely your Adrenals freaking out and trying to compensate for the lack of T3. and that’s also why you are getting cold.
first of all, the low ferritin and low vit D screams low thyroid. depending on how old you are, if you are in Peri menopause, then join the club, because myself and so many women I know begin to have these exact problems in their 40’s.
The Adrenals become fatigued because they are trying to make up for the lack of Thyroid and other hormone imbalances. Unforrunately for me all this started when my periods stopped at age 50. I had constant low blood sugars. 2 endos completely missed the boat on treating that, I cured it myself by using progesterone cream.
I bet you will feel loads better by taking half a teaspoon of good quality sea salt (I use Morton’s Real Salt) in a glass of water upon rising in the morning, drop the licorice root as that will cause a rise in blood pressure and if you have high cortisol anytime in the day it will increase that by making your body hang onto it and then you will have worse problems. I am getting better now simply by taking Natural dessicated thyroid, started slow and worked up to 3 1/2 grains, bio identical hormones (progesterone, testosterone, and recently small amount of bi est). within 3 months of this regime my hair stopped falling out, I have all new “bits” of new growth showing now, my skin is glowing, I have energy and have gone from freezing cold to a steady 98.3 and up to 98.6 temp. I even have to shave my legs again and my nails are growing so fast! I have had a couple of blips along the way, when I failed to raise my dose of Thyroid in time, but now I am able to work and started working out again and I feel normal. I wasted 2 years with the same symptoms as you because my labs were “normal”. I had to BEG to try the NDT, and I’m so glad I persevered, because It is WORKING! best of luck to you.
This has been perhaps over-educational for me. I spent two days reading your articles and the comments and it was brought home to me once again that “the more you know, the more you know you don’t know”. OMG I feel like a deer in the headlights. I have had severe COPD for 22 years and never connected my low thyroid to it but did start treatment at about the same time I learned I had it. I’ve been taking Vitamin D3 for a few years, but suspicious when doctors rx it. (I know, my prejudices are showing). Now I see it may be a mistake – even treating the so-called thyroid problem may be a mistake. My last test showed TSH 0.21, free T4 0.8, and free T3 2.0. I was on both Synthroid 88 mcg, Cytomel 5 mcg, and Armour (3 days a week). These were the only results I received, do not know if anything else was tested. Is there a way after all this time to find out if I still have any thyroid activity left? I wonder if I should get off my thyroid meds and see what happens. Should I taper if I do? What should a person with a chronic disease do – if the body wants you to lay down and rest, you supposed to do that for 22 years? lol
Laura,
As if being chronically ill wasn’t difficult enough on its own…we are left trying to sort out and understand complex systems that only seem to become more complex the deeper one goes. So many times I find myself wishing it were as easy as some sites make it seem. Or that the symptoms of low thyroid we not also symptoms of hundreds of other things as well.
Free T3 is really the only number…the only vital number…because that is the only active usable thyroid hormone. Many who are chronically ill will develop low FT3…and the author of this article is raising the question that maybe treating the low T3 is not necessary because when the illness is resolved the low T3 will resolve as well. As well, many who are chronically ill will convert excessive RT3 (by this I mean over range)…which is another normal reaction to being ill. Yes, it IS what couches people when they are sick with the flu…and YES, it IS very difficult living like that every day of one’s life…year after year. And, NO, I don’t have the answer for what to do about that…other than arm yourself with information and make as informed a choice as you can make about what you want to do for you. That said, as someone with no thyroid (and thus dependent on thyroid hormone) and as one who does not convert T4 (the standard rx) into enough T3 and converts too much to RT3 (way over range)…and feels like this daily…I can tell you that taking T3 (even in excess) does not lead to more energy…or weight loss. And, I wish it were that easy to feel better…trust me, I could use some relief.
However, there ARE some people who DO have genuinely failing thyroids…in other words are low not because they are sick, but because their thyroid is truly not making enough…and they WILL feel better on some supplemental thyroid. Those who are low because they are sick and because their body set their levels low…will stay low even on thyroid rx…and these are the people who need to beware. While it is, in my view, rather simple (and imo, prudent) that practioners should decipher which a patient is…they do not. Nor, do many of them care enough to…sadly. Perhaps the greatest barrier to patients is the misunderstanding in assuming that endo hormones are the same as vitamins…and that they are safe to take because the body will simply rid itself of excess like it does with vitamins…as this is not true. Similarly, minerals operate differently than vitamins…and too much minerals (which are metals) are quickly dangerous. While SOME people will get rid of the excess fairly well…a large number of chronically ill (and hard to find treatment for) patients do not. Therefore I am ever an advocate for learning how the body works…or how that process in particular works…then patients can more readily decipher what is good information from good-sounding who-ha, if you know what I mean.
Hang in there is all I can say. Be patient with yourself and with your doctors…illness is a journey of layers. For what it is worth, I recently did the 23andMe genetic test and found that I have a double mutation of the genetic instruction for the receptor…not sure how that plays out yet…but just opens the lid on a whole deeper layer.
As to whether to lay down and rest (allowing the body to divert its energy into making one well)…or to kick-start the body into action (never allowing itself to get well)…that is a highly personal choice that only you can make for yourself…and imho neither choice is all that great. From one chronically sick person to another, I am sorry that you are sick.
Currently, I am finally adjusting to normal life enough to start what I consider to be the best totally healthy diet:
3 meals and 3 snacks per day, eating until “pleasantly satisfied.”
1- Water at each meal and each snack
2- Veggies at each meal except breakfast, and each snack
3- Whole Grains at each meal
4- Protein at each meal (I eat meat or eggs for the protein, with milk and dairy to supplement it.)
5- Fruit at each meal, (at the end of the meal particularly if the fruit is sweet.
I believe that having an inadequate or restrictive diet contributes to the problem of low T3, but low T3 can also cause such a low appetite and slowed abilities to do anything that it can make eating a diet like the one above very hard to do.
After my total thyroidectomi I was given T3 tabletts. The effect was absolutely devastating. I’ve lbeen paralised one side of my body and was too week to could face another hospitalising. Stopped to take further tablets and had plenty of rest. The medical professionals decided not to give me T3 ever.
YES!! It helped me tremendously. I had every symptom of hypothyroid but my TSH levels were ok and my free T4 was lower end ok. The only level below normal was my T3. My doctor put me on T3 and I immediately noticed a difference. I could think more clearly, my depression lifted (these result were immediate) and I started losing weight (after trying for months and months to no avail before the T3). My doctor monitored my levels and adjusted accordingly and now a year and a half later, I am feeling 100%. I can sleep at night and am not constantly exhausted. I can lose weight when I try. My eyebrows have grown back, I am not constantly cold. The list goes on and on. Due to the T3, my TSH is suppressed and I am very scared that my new doctor will not continue my thyroid medication. I was living near Hong Kong and my doctor there was very forward thinking and focussed on how I felt, not the numbers. I just moved back to Canada and pray I will find a like minded doctor here.
Awesome links. So much information to check out. Thanks for sharing it, Gillian.
Not helpful but interesting: we get A2 milk in our local supermarket. It comes from Jersey and Gernsey cows in particular and of course all Asian and African breeds. The Freisian/Holstein and the Ayrshire breeds are very much A1. Our infamous dairying company, Fonterra of the dirty pipe, has a stud bull herd which were 68% A2 in 2005. I think they’re surreptiously converting their herds to A2 whilst rubbishing the claims of A2 proponents. Then, tah-dah! They’ll unleash the A2 milk on us at a premium price. They’ve patented the genotyping for both cows and bulls. The other milk producers will be left 15 years behind. Sneaky buggaz.
Our lab technology can convert lab results e.g TSH or FT3, into graphs at the click of a button. Your lab will probably be able to do the same and print it out for you.
I read the Low T3 Syndrome articles. I have a host of stuff going on and need help/advice.
1st, I had a tumor (benign adenoma) removed from my thyroid gland in 1977 when I was 20 yo. They removed 4/5 of my thyroid gland. I’ve been on thyroid supplementation ever since. I am now 56 yo. When synthetic thyroid came out, my doc put me on it. It was disastrous. I turned to stone. Back on thyroid and felt better. Then a few yrs. later when forced into an HMO, that doc insisted I try it again. Same terrible reaction – muscles developing rigor mortis, pain everywhere and no energy. Back to the Armour and felt better.
My current HMO doc at Kaiser tests TSH mainly and has only checked T4 a few times over the past several yrs. and refuses to even look at T3. I feel better when I take at least 60mg of Armour daily (2 tabs of 30mg in the morning), but last year (5/2012), according to my TSH test results, he made me cut my dose to one 30mg tab one day and two 30mg tabs the next day alternating (he wanted to cut me back to only 30mg, but I argued against it). Since then, I have more hypothyroid symptoms – dry skin, fatigue, muscle stiffness and cramps, joint pain, brain fog and systemic inflammation. I have trouble staying awake at work and even coffee puts me to sleep. I am often cold and wrap myself in a blanket at my desk. My hands have become arthritic (with swelling and inflammation on both thumbs near the wrist that are extremely painful and disabling). I have to keep working to survive and support my family. I have been experiencing disabling bouts of inflammation and headaches recently this summer.
I also have Hep C, genotype 1A – dx’d in 1998, probably infected in 1985 from an injection of gamma globulin prior to travel outside the US. I have never treated with INF/RIB and never will. I am waiting for a better treatment and there is great promise for that. Actually, a cure in 100% of 1A patients taking a two drug protease inhibitor combo was made last year with no significant or dangerous side effects. The two companies are Gliead and Bristol-Myers Squibb. Gilead refuses to move ahead with stage 3 clinical trials and is instead waiting to develop their own complimentary drug so as to corner the market. Nice. Meanwhile, people suffer and die from HCv.
In 1999, I became terribly ill after our house was invaded by rats. I discovered that the mites from the rats were biting me at night. Shortly after moving out of the rental house, I became symptomatic with many horrible symptoms (chills, nausea, flu-like illness, heart symptoms/air hunger, massive joint inflammation and kidney pain), but my HMO docs chalked it all up to Hep C. I now know it was Lyme (Bb) and probably babesia (yes, mites do carry Bb and more). According to the CDC, IDSA and Kaiser, I don’t have Lyme. I didn’t get tested until way late in the game, many yrs. post infection. A really bad sinus infection in 2003 necessitated antibiotic tx. They gave me Tequin, a fluoroquinalone and for the first time in many years, the joint pain and kidney pain stopped completely and I felt normal again, only to have it all return a few weeks later. I told my doc, but he just rolled his eyes and went back to thinking about his golf game I’m sure. It has been a long and arduous path to unravel what is going on with me, but I did finally get tested for Lyme in 2006 via a very sensitive test from the former Bowen Institute in Florida and it came back Lyme positive. My Kaiser HMO did not recognize this test or accept it. I insisted on the Igenex test which only showed me positive for Lyme in 2 of 5 bands and according to the CDC and IDSA, that means I don’t have Lyme, but according to Lyme literates, it equates to them telling me that I’m only a little bit pregnant. Since I have liver issues with the Hep C, long term abx is not my path anyway. I have no money for seeing an LLMD or other docs outside of the system. I have been self treating to stay alive for many years and using herbal abx protocols to treat the Lyme/co-infections, but it is a forever battle that I can never stop. If I even take a break of a week from my protocol, I start to slip into Lyme horrors again. As long as I keep on with my protocol, I maintain.
That being said, since they reduced my thyroid meds., I am feeling worse. I also am certain I have adrenal issues, but good luck getting the HMO to believe that either. Their onetime cortisol check (a single blood draw) a few yrs. ago at my request, said all was ok. I have become like a vampire. I have blood infected with Lyme, etc., I can’t sleep at night and am dysfunctional and tired during the day. I am also electro-hypersensitive and have battled to get the smart meters off my home here in Sacramento, CA. I’ve learned a great deal about RF and EMF and know that this too is a piece of the puzzle causing harm to myself and countless others.
I believe I may suffer from Low T3 syndrome and it is highly likely that I have something going on with the hypothalamic-pituitary-thyroid axis. I have all of these symptoms and more: headaches, impaired vision, nausea, weakness, loss of appetite, hormone imbalances (post menopause/vaginal dryness- too painful for intercourse), decreased muscle mass and body hair.
I have become gluten intolerant and gone off gluten for years, also no nightshade plants, dairy, or meat. I eat raw, organic, non-GMO and juice as much as possible. No alcohol since HCv dx in 1998. My liver is very sensitive and I can’t take any risks. I live as clean as I can and do what it takes to keep my liver functional…and wait and hope for a viable treatment.
Hassling over my thyroid meds. with my HMO doc is not something I need to do at all at this point.
Any suggestions that are feasible to help me would be greatly appreciated.
Thank you.
Julie
Regarding the Hep C issue, I’ve been following this site below and believe George Henderson, the author, has some good ideas based on very solid science and links e.g. to someone who has been taking LDN and supplements (Nola Hepper). Both he and she have got their viral loads way down with their interventions.
http://hopefulgeranium.blogspot.co.nz/
Hope you find it helpful.
Thanks. I will check it out.
Hi Julie,
A few thoughts –
If you have copies of all your thyroid results, you could try making a graph of your TSH over time and compare the TSH results with the thyroid medication you were taking at that time and how you felt at that time. If you see a pattern where the TSH is within the normal range (for the population) but goes up when you are on T4 and down when you are on Armour and you feel better when it is up and worse when it is down, then the next time you see your doctor, you could show the graph and say something along the lines of, “I thought about what you said about me taking too much Armour so I thought I’d start tracking it. But doesn’t it look as though a TSH (of whatever it is when you are on Armour) is normal for me?”
If you are low in selenium, getting more selenium may help T4 to T3 conversion – but if you’re getting enough, then you don’t want to take more, as explained in http://211.144.68.84:9998/91keshi/Public/File/36/379-9822/pdf/1-s2.0-S0140673611614529-main.pdf
However, if you don’t feel decent unless your TSH is way low, below the normal range, then I think you’re right to suspect that something else is going other than thyroid hormone supply.
For example, low muscle mass and low body hair production indicate low testosterone may be a problem. Testosterone is made from estrogen, so testosterone can be low when estrogen is low.
Testosterone is also the hormone mostly strongly bound to sex hormone binding globulin, so anything that increases sex hormone binding globulin will result in testosterone in particular being bound up and inactivated. Sex hormone binding globulin is increased when hormones are taken by mouth (instead of through the skin by patch or gel, etc.) It is also increased in low calorie intake. E.g., http://www.medic8.com/blood-disorders/blood-test/specific-blood-tests/sex-hormone-binding-globulin.html , http://www.pcrm.org/pdfs/health/medstudents/Diet%20and%20sex-hormone%20binding%20globulin%20dysmenorrhea%20and%20premenstrual%20symptoms.pdf Apparently stinging nettle and flax seed can lower sex hormone binding globulin – http://en.wikipedia.org/wiki/3,4-divanillyltetrahydrofuran – but you want to check with your doctor and a herb-drug interaction checker before taking stinging nettle (e.g., see side effects tab on http://www.webmd.com/vitamins-supplements/ingredientmono-664-STINGING%20NETTLE.aspx?activeIngredientId=664&activeIngredientName=STINGING%20NETTLE )
You say you’re eating mostly non-GMO so probably you’re not eating soy, but just in case, soy contains enough weak plant estrogens (phytoestrogens) to bind to many of the body’s estrogen receptors and stop human estrogen from working. This can be helpful when you *want* to block human estrogen from working – e.g., if you have estrogen-receptor-positive breast cancer – http://jama.jamanetwork.com/article.aspx?articleid=185034 – but not so helpful if you want your estrogen to work for you. In my experience, being low on estrogen totally ruins your short term memory and causes waking up for no reason in the middle of the night and not being able to get back to sleep. I must say I also wonder about possible effects of BPA (e.g., found in the lining of tin cans) and other estrogenic chemicals too – e.g., http://endo.endojournals.org/content/153/7/3357.short .
Without eating meat, you may also be low on iron, which will also make you cold, tired, achy, and weak. One interesting study found that even women (menstruating women) with hemoglobins that were normal but in the bottom half of the normal range felt better when they took iron. http://www.researchgate.net/publication/229015025_Effect_of_iron_supplementation_on_fatigue_in_nonanemic_menstruating_women_with_low_ferritin_a_randomized_controlled_trial/file/79e414ffe82d2373ad.pdf
One warning about using ferritin as a measure of iron – ferritin goes up when iron is up, but it also goes up with inflammation, even when iron is low. So if you have inflammation, which it sounds like you have, your ferritin might be high even when your iron is low. E.g., http://en.wikipedia.org/wiki/Ferritin , http://www.rnzcgp.org.nz/assets/documents/Publications/Archive-NZFP/Feb-2002-NZFP-Vol-29-No-1/berkhan.pdf
If you’re not eating much animal food (e.g., fish, eggs) then you may also be low on B12 and zinc.
Also, being low on copper can prevent your body from metabolizing iron properly – e.g here’s a case report of a patient with anemia that got better when low copper was fixed – http://www.abran.org.br/RevistaE/index.php/IJNutrology/article/download/101/117
Would your HMO let you see a dietician to evaluate your diet for micronutrient intake? (e.g., iron, selenium, copper, calcium, B12, folic acid, etc.?)
Plus, even if your diet has all the nutrients it should, having celiac disease (and maybe even wheat or other non-celiac gluten intolerance) may reduce your ability to absorb nutrients like iron, zinc, copper, folate, selenium, magnesium, etc. ( try a google scholar search on celiac absorption name-of-micronutrient and you’ll see what I mean.) Being completely off gluten should help normalize absorption, but even tiny amounts of gluten too small to cause symptoms may prevent the gut lining from healing and keep the malabsorption problem going – in a recent study, 3 grams of gluten didn’t cause gut symptoms but did cause enough gut damage for a biopsy to show celiac disease (http://allergy.net.au/wp-content/uploads/2013/02/Kinetics-of-response-to-gluten-challenge-Leffler-Gut-2012.pdf )
Another cause of poor absorption of B12 and iron is Helicobacter pylori infection. H. pylori infection also causes severe nausea of pregnancy and stomach cancer, among other things. – e.g., see http://www.ncbi.nlm.nih.gov/pubmed/22105725 It may also lead to development of food allergies by making holes in the gut lining so undigested food molecules can get into the bloodstream and offend the white cells – http://www.jle.com/e-docs/00/04/4D/BE/article.phtml
And you’re getting enough vitamin D? (e.g., see discussion on vitamin D and how to tell how much you’re getting from the Vitamin D Council – http://www.vitamindcouncil.org/about-vitamin-d/ .) Getting physiological levels of vitamin D might help improve immune function – http://www.medscape.com/viewarticle/776426?src=wnl_edit_medn_fmed&spon=34 (you have to join Medscape to see these articles but it’s free), http://www.ncbi.nlm.nih.gov/pubmed/23885887
Finally, what kind of vision problems? If you are worried about your pituitary not functioning properly and causing your TSH to be lower than it should be, one of the reasons for pituitary underperformance is a pituitary growth. When they get big, pituitary growths can press on the optic nerves to the eyes and cause blind spots at the sides of your visual fields. (e.g., http://www.patient.co.uk/doctor/Pituitary-Tumours.htm , and a picture posted at http://dc171.4shared.com/doc/7Wso8n-w/preview_html_305f2604.jpg ) You can test your visual fields for free online – e.g., http://www.testvision.org/
Anyhow, I hope some of this will turn out to be useful for you.
Hi Gilliana.
I do have results of more recent thyroid tests via Kaiser, but have always been on Armour Thyroid since with them. The synthetic T4 experiences go way back beyond record (in the 90’s) when not in an HMO. Making a graph does seem like a good idea though. I’ll do it.
Selenium (200 mcg) is part of the protocol I take for Hep C, but I have been slacking on that for awhile. It is so hard to keep up with everything. I will get back on it. Great paper on it – thanks! I do eat selenium rich foods (plant source only). I am a vegetarian and will not eat meat no matter what, but do eat local fresh cage free eggs. I can’t do dairy either as my body does not tolerate it in any form raw or not. Thankfully, eggs are ok. I think my copper may be too high as I have recently noticed my fingernails have blue lunula (moons). I am sure I have adrenal fatigue and that can influence copper integration as well as the liver issues.
My TSH is not WAY below normal and has only been slightly below normal a few times. I just feel better when it is right at the edge (with a higher dose of thyroid) instead of in the middle where they keep trying to put me (on a lower dose of thyroid).
I am post menopausal and know I’m low on estrogen, but will not take hormone therapy, at least not the type offered by my HMO. I can’t afford it otherwise via bio identical hormones and compounding pharmacists. I have used stinging nettle (tea and extract) as well as oatstraw mainly for mineral content. I also grow stinging nettle in my garden and have eaten it lightly stir fried w/ veggies. I even blanched it once and juiced it. Stinging nettle is so much fun! I put fresh ground flax seed on salads, veggies and just about everything – I have it every day and hemp oil too. I don’t use soy anymore, not for a long time and don’t eat anything out of cans and avoid plastic containers too. I use almond, coconut and flax milk. I can’t have nightshade plants either.
With Hep C, iron is an issue as it advances viral replication. I have too much iron, so I avoid it and make sure not to take vit. C with meals as it enhances iron absorption. I also take B12 (methylcobalamin) 5-10,000 mcg/day and Jarro Zinc Balance (15 mg). I also take vit. K2, milk thistle, N-acetyl cysteine, CoQ10, and curcurmin. I also take melatonin to help me sleep. I do not have celiac disease, but am completely off gluten. I also take MSM and magnesium. I take vit. D3 (4 to 8,000 IU) and am at the high end of the scale. I was in the Vit. D-action study for several years. http://www.grassrootshealth.net/
The vision problems are: episodic blurring and photophobia, and scratchy red dry eyes with penguicula (even though I use drops consistently). I also get this massive floater thing from time to time – a big white blob that transverses my visual field from left to right, then is gone. I get my eyes checked annually and just had it done. No blind spots noted. I did the visual field test you sent the link to anyway. Perfect in both eyes. Cool test! Thanks. I think the eye problems are both related to Lyme and the effects from RF/EMF as I am electro-hypersensitive and spend way too much time in front of a computer screen.
I really appreciate your thoughtful and comprehensive reply and information.
I like your kitty avatar picture.
Julie
Hi Julie,
Wow, I can see how much research and work you have done and are doing to maintain the best health you can!
I have a few more thoughts just in case any of them help –
About dairy: do you react to goat’s milk as well as cow’s milk? I ask because I react to cow’s milk but discovered to my great joy that I don’t react to goat’s milk. This may mean that the part of cow’s milk to which I am reacting is the beta-casein, which is A1 in most cow’s milk around here and A2 in milk from goats, sheep, etc. ( e.g., http://www.betacasein.org/?p=variants ) . I think goat’s milk itself tastes terrible but the yoghurt, butter, and cheese tastes great. There are apparently heritage breeds of cows that produce A2 beta-casein milk and if I ever find milk from such a cow, I’m going to try it. I make my own coconut-almond milk but I really miss milk and cream. (Besides dairy, I react to gluten, corn, xanthan gum, carrageenan, soy, nightshades, beet, nitrate/nitrite, olives and olive oil, flaxseed and flaxseed oil, sesame seeds and sesame oil, canola, oranges, grapefruit, and pomelo. I kept developing new food intolerances until I finally managed to clear up my H. pylori infection – but didn’t figure it out until I had developed a long list of intolerances that included a *lot* of my favourite foods.)
About blue lunula – that is interesting. I found some articles on line about fingernail changes as clues to systemic disease – the best I think was a powerpoint presentation ( http://www.fpm.emory.edu/Family/didactics/powerpint/Nails.ppt ), along with http://www.opma.ca/press/press_details.asp?pid=57 from the Ontario Podiatric Medical Association and Nail Abnormalities: Clues to Systemic Disease from the American Family Physician – http://www.aafp.org/afp/2004/0315/p1417.html#afp20040315p1417-t1 . You don’t have any brown rings around your irises? E.g., http://en.wikipedia.org/wiki/Wilson%27s_disease
About bioidentical hormones: there are FDA-approved preparations of estradiol (including transdermal preps) and progesterone (real progesterone) micronized in oil in the US – I found a 2011 list from the Mayo Clinic – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127562/ (Table 1.) – but I’m guessing they’re probably more expensive than horse and artificial hormones?
About iron: your serum iron is up and your transferrin saturation is high? http://labtestsonline.org/understanding/analytes/tibc/tab/test (You can’t go by ferritin being up, because it can be high because iron is high, or it can be high because of inflammation even when there is iron deficiency.)
About your eyes: good to hear that your eye exam was fine. Just checking – given your symptoms of blurring, light sensitivity, occasional big white floaters, and dry red eyes despite drops (artificial tears?), I’m assuming the exam involved tear production testing (to rule out things like keratoconjunctivitis sicca – http://emedicine.medscape.com/article/1210417-clinical ), and pupil dilation and a slit lamp exam?
I’m glad you like my avatar pic – I am indebted to our cat, Asti la Gata, who graciously allowed me to borrow her image.
Gillian
When I used bio-identical progesterone about 2 years ago it was $25-$30, which I had to pay the whole cost since insurance didn’t cover it. Now I am on high deductible insurance, anyway, and the cost of premarin was nearly $100. My OB/gyn won’t prescribe the bio-identical progesterone anymore because she feels like she is “a quack” when she does. The premarin made my vaginal dryness worse and seemed to have started my issues with painful intercourse. I know that estrogen can bind with T3 causing there to be proportionately less FT3.
Julie, there are bio identical hormone patches that your insurance will cover, such as Climara or estradot, just make sure you take them with natural progesterone, Prometrium is also bio identical and is covered by most insurances. I suffered greatly with low estrogen and all the time the Naturopath thought I was estrogen dominant. which I wasn’t. I was exhausted, cold, crying, could barely breathe, was on total disability becuase of low estrogen. I got fed up and got bio identicals, and also was put on natural dessicated thyroid. within 3 months, I’m back at work and feeling normal. why suffer? a little estrogen is safe and got my life back! I wasted 3 years with natural stuff. spent thousands. lost my husband because I couldn’t function in any way and lost my job. If only I hadn’t bullied myself into believing taking hormones was a sign of female weakness. Hormones saved my life!
I have had hypothyroid symptoms all my life and suspect a genetic connection–like me, my sister was also overlooked at first with her symptoms, having a TSH in the normal range, but finally being tested more thoroughly and found to have a low free T3, now doing well on Armour Thyroid. I also suspect others on our mother’s side of the family are under diagnosed or under treated.
As for myself, I have always been sensitive to the cold. I thought I was more like a reptile than like a mammal, having to sit on a rock in the sunshine to get warm. I also had less energy than most children my age. I was usually underweight, though. I was 5 lbs 4 oz. at birth, weak and limp “like a dishrag” my mom told me. I was born about two months early according to her due date, but she didn’t know she was pregnant at first and the doctor had to guess at the date.
At age 38 when I was pregnant with my third child, I tried very hard to eat healthily–avoiding nitrites, added food colors, and other additives I was warned against in my prenatal book. In actuality, I didn’t replace the foods I was avoiding with any other better foods, so it resulted in a calorie shortage. I knew that dieting in pregnancy was bad, but I didn’t understand that that was what I was doing. I got very tired and became a couch potato–too tired to eat even if I were hungry.
My due date was January 8th and I did become very hungry, craving eggnog through the holiday season, which I drank in great quantities. Shortly after giving birth, I was pale, somewhat jaundiced, with brittle hair, and sick with what seemed viral, along with my husband. We both saw the doctor who tested our blood and determined that he had infectious mononucleosis and I had high cholesterol. He put me on a low-fat diet. I had started to show a permanent fatty layer across my abdomen. Any dieting or other attempt at losing weight since then was futile. I might lose 5 lbs but quickly regain 10. Finally, it was all I could do to maintain my weight for a year or two without gaining much.
I had one more child. I conceived her without having had a period since breastfeeding her sister. Nine months before she was born, I had been coughing nightly, so I went to the doctor. He asked me if I was pregnant and I said “no”. He prescribed Medrol which perked me up instantly as well as eliminated the coughing. Three months later, after knowing women kept asking if I was pregnant, I had a positive test. I had an ultrasound to determine the due date and she was born on that day. She had infant glaucoma, probably as a result of the Medrol, but I wonder if I would have ovulated if I hadn’t had the steroid.
I had 5 subsequent miscarriages and read that the thyroid could be to blame, so I asked my doctor for a test. He argued with me about it but finally checked me and I was “normal”. At age 52, I was found to have a high ANA test and was told I had Lupus. After that my doctor checked my TSH every year, but I was always in the normal range. At age 60, after that doctor retired, my TSH dropped to practically zero. I was tested for FT4 which was borderline high, so I was not put on medicine immediately. About 6-7 months later, the double vision I had always had since my teen years became much worse. The eye doctor tested me for Graves’ Disease and diagnosed it. I was treated with methimazole in various doses and with a summer off due to my rebellion, but finally, 7 months ago, I was able to go off the MMI without going hyperthyroid again.
These last 5 years I have seen 3 endocrinologists, and my 2nd endo “fired” me because I went elsewhere for a second opinion. Endo #3 was an 8 hour drive away, out of state, and I went to her because she specialized specifically in the thyroid and the pituitary and I felt horrible after going off the MMI, and having both low-normal FT3 and TSH, FT4 being in the middle of the range.
She did not want to give me any treatment because my numbers (she doesn’t believe the tests for free T3 are accurate, so tested the total T3) my numbers were in the normal range. (Both TT3 and TSH were in the lower portion of the normal range.) She said she would test me for Hashimoto’s, saying I could have both HT and GD antibodies. It turns out I do. She encouraged me to take a copy of her email to my PCP and have him test me every 3-4 months for TSH, FT4 and TT3 and she would see me in a year, or even sooner if my numbers or my symptoms seemed to show my condition was worsening.
I showed the letter to my new PCP, and told him it made me feel like I was walking a tightrope between hyper and hypo, but I didn’t think any doctor could do it for me. He agreed. We discussed the treatment options and I wanted Cytomel because I knew it was quick acting and with a short half-life. He let me have the 5 mcg tablets, saying I could take 0-2 tablets per day (30 per month maximum). That was one month ago.
I took 1/2 tablets at first and only every other day for a week, then upped the dose by 1/4 tablet, then the frequency to every day until my blood pressure and heart rate went above normal so I stopped the Cytomel for two weeks when my blood pressure dropped below 100/60 HR below 60. That was last Saturday, so I took another 1/2 tablet. I have basically monitored my BP and HR to determine if I was getting too much Cytomel, and basically found that I don’t need it very much. It was a great jolt to my system when I took the first 1/2 tablet, and my resting heart rate had jumped to 91 after 3 and a half hours.
The over-all effect was that I finally feel normal again. I feel like I can breathe a great sigh of relief. I sleep very well now. Awake in the day, sleeping at night, especially the night following the Cytomel dose. I am not foggy in my thinking anymore, and maybe my appetite is coming back a little, but I still forget to eat lunch regularly. I really want to eat a variety of good healthy foods in a regular way. I don’t want to follow a Paleo or any other restrictive diet.
I’m in a bit of a pickle here in Canada. in my province (Ontario) they discontinued the Reverse T3 test and I simply cannot get it. my tsh and other thyroid tests come back normal, albeit low end free T3. I’ve not been tested for antibodies or shbg the docs said they wont do it. I’m on disability for what my GP calls Chronic Fatigue and prescribed SSRI’s, which i refused. I basically lost 120lbs by not eating very much and crazy exercise (turbo fire every day) which led to me being very anemic, and overtraining syndrome. Then at same time Menopause hit me like a ton of bricks and along came Adrenal dysfunction and severe hormone imbalance, diagnosed by a functional med specialist/obgyn. I’m on bio identicals after dealing with Estrogen dominance for over a year. Finally figured out what is helping (testosterone and progesterone ) but I’m still freezing cold hands and feet and fatigued. I know I need thyroid meds. I am on adrenal support now for a year. it has helped stabilize my temps which run stable but low at 97.4 and do climb up to 97.9 but that’s it. What should I do? all other blood tests are normal, my iron is very good now that I have been Gluten free for 5 months and my vitamin D levels are good. I am stumped. my doctor is considering slow release T3. I’m scared though of making myself worse. but I have no inflammation, no infections, I eat super clean/healthy, no more hypoglycemia now either, but very slow heart rate, normal BP (was lowish before adrenal support which is herbal)
I am stopping vitamin d3 supps for a while to see if it helps in any way.
any thoughts? I’ve been “sick” for a year and a half. its gotta be the thyroid?
further to above, I also gained 34 lbs in the past 5 months despite eating only 1300 calories or less of Paleo/gluten free, although I do need to eat more carbs than is recommended but I dont overdo it.
For what it’s worth, weight gain is NOT always the thyroid (or overeating)…many things can cause weight gain and inability to lose it. For example, high norepinephrine can cause weight gain…as can low taurine. Since both of these things are things that our bodies make…the problem can lay in the body not functioning as it should. Indeed, yet another new cause for weight gain to TOO MUCH good bacteria in the gut. Apparently, the good bacteria is what breaks the food down into nutrients to be absorbed…and those with over active bacteria gain more weight than those who have less bacteria on the same diets. Also…just a reminder, that too much thyroid hormone can also cause paradoxical weight gain as well.
D3 is 25-D…the storage form of D…and needs to be converted into 1,25-D in order to be used. A number of people for reasons such as genetics and/or illness have constantly low D3 or 25-D. You have to specifically ask for the 1,25-D test…but most will find that their 1,25-D lab is normal.
You truly do not want to take thyroid meds if you do not need them. The sad and unfortunate issue with practioners who just hand thyroid meds out (or people who buy them over the counter) is that the endocrine system is extremely sensitive and self-regulating…for all the thyroid you take, your thyroid stops making it…the more you take the less the thyroid makes. When you take more than you need, the thyroid atrophies and dies…and then you are stuck on a not-perfect replacement for life. NOT, I suspect, what you want to have happen.
Even if you and your doctors do not know why you are having these symptoms right now…have faith in that there IS a reason. However, that reason might not be the thyroid even if it looks like it is.
Lastly, not eating enough or too much exercise will cause you to make an over abundance of RT3…the non-usable form of the thyroid hormone…which just happens to dock in the receptors and prevents T3 from getting in and being used. You may want to test your RT3 levels. Vitamin D ALSO docks in the thyroid receptors and blocks T3 from getting in…and many researchers even go so far as to state that 1,25-D (the converted one that they don’t ever seem to test) will “displace” T3 from the receptors.
Sorry you are going through all this, good luck in sleuthing out your answers.
Hi Gina,
Well I am probably not the best barer of thoughts on this…but will offer my two cents anyways.
The issue with iodine is this…the only way that it gets in one’s cells is on the back of a thyroid hormone. If your daughter’s thyroid levels were good…then she has enough iodine. Iodine does not support the thyroid…the thyroid converts iodine into something our body can use.
The issue with selenium is that both too low and too high selenium have exactly the same symptoms. Most do not know this, but 2 Brazil Nuts a day will give all the selenium one needs…and unlike taking a supplement, the body will not OD on food sources.
There are many reasons for low thyroid and low D…and supping thyroid and D will not remove the cause. A very usefull couple of tests to get would be RT3 and 1,25-D along with the usal 25-D. When one is sick, for instance, the body slows down thyroid production.
The 25-D that drs run is the storage hormone…the 1,25-D that drs do not like to run, is the active form of D. In the presence of a bacterial issue…the body will over-convert storage D into active giving what is known as the Vit D Reversal Pattern. That said, active D docks in the very same receptors as thyroid…meaning, too much active D will cause a hypo-thyroid situation even if there is plenty thyroid hormone in the blood…because it prevents it from docking in the receptors. RT3 will do the same.
The issue with Armour…that I doubt natural-type drs will get anytime this decade…is it comes from Armour Pigs…as in Armour Hot Dogs. Slaughter animals that must by law be slaughtered before their second birthday are actually being slaughtered at 1.5 years due to massive endo-hormone-giving to grown them bigger faster fatter…and they would die of endo hormone OD by age 1.5 years. So…Armour Thyroid is dried out slaughter pig thyroid tissue…not necessarily thyroid hormone. It is unlikely that same drs rx’ing this stuff would tell you it is ok to eat hot dogs….and yet, they give the tissue that has been OD’d on hormones. That said, there is a new…better (for people who are senstive) T4 med called Tirosint…it is T4 with no fillers.
Sorry that I don’t have the most upbeat thoughts to offer…but hope these are helpful anyways.