This article is part of a special report on Thyroid Disorders. To see the other articles in this series, click here.
In this final article in the series on Low T3 Syndrome, we’ll discuss whether thyroid hormone replacement therapy is an appropriate treatment in these cases.
Why T3 Levels Are Low
Unfortunately, there are few studies that have examined this question specifically, and even fewer that have explored the question of whether T4 or T3 (and which type of each) would be the best choice.
As a clinician, my primary concern is always primum non nocere, or “first, do no harm.” From this perspective it’s important to recognize that the changes seen in Low T3 Syndrome may represent a restorative physiological adaptation by the body to chronic illness.
For example, the changes observed in the thyroid axis in acute illness are similar to those observed in fasting, which can be interpreted as an attempt to reduce energy expenditure and protein wasting. (1) Giving fasting subjects thyroid hormone results in increased catabolism (breakdown). (2)
In cases of chronic illness, however, it is less clear what effect thyroid hormone replacement has. The few studies that have been done produced mixed results. (3)
Some studies show that treatment causes harm, others show no change, and still others show an improvement. After reviewing the literature on this, I’ve come to the following tentative conclusions:
- T4 is rarely, if ever, effective in Low T3 Syndrome and may even cause harm. This is probably due to the decreased conversion of T4 to T3 that is seen in chronic illness.
- T3 replacement has been shown to be consistently beneficial only in cardiac patients who’ve recently had surgery, heart failure or a transplant.
That said, I’ve heard anecdotal reports of improvement from people who have taken replacement T3 hormone for a condition called “Wilson’s Syndrome” (which does not exist in the scientific literature or according to any mainstream medical organizations). Wilson’s Syndrome refers to low basal body temperature and other nonspecific symptoms occurring in the presence of normal thyroid hormones.
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I’ll be the first to admit that “lack of evidence is not evidence against,” and as I mentioned earlier, there’s not a lot of research on the effectiveness of T4 and T3 replacement therapy in Low T3 Syndrome. It may be that as we look into this further, we’ll discover a role for thyroid hormone replacement in these conditions.
That said, I think caution is warranted.
And, if the changes seen in Low T3 Syndrome are a compensatory adaptation of the body in response to chronic illness, increasing T3 levels artificially may have undesirable effects.
In the majority of cases of Low T3 Syndrome, I think it’s preferable to identify the underlying cause and treat that. As I discussed in articles #3 and #4 in this series, those causes most often include infections, autoimmunity and inflammation.
Articles in this series:
- Low T3 Syndrome I: It’s Not About The Thyroid!
- Low T3 Syndrome II: Myths and Misconceptions
- Low T3 syndrome III: Inflammation Strikes Again
- Low T3 Syndrome IV: An Autoimmune Disease You’ve Never Heard Of?
- Low T3 syndrome V: Should It Be Treated With Thyroid Hormone?
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I’m just really hoping this helps someone bc it could have saved me years if I’d read something like this before:
I was diagnosed with subclinical hypothyroidism but let me tell you, it felt anything but subclinical. I felt like a mental zombie. I went from being high energy, with loads of vitality, to being exhausted all the time. If I got up and kept moving then I could get through the day but if I worked (hospital, 12hr shifts) 3 days in a row then I’d sleep or lay in bed for two days after before wanting to do anything. Poor sleep (waking at 3-4:30) and always constipated. they diagnosed me with Irritable Bowel but the stuff they gave me never worked really or had terrible side effects. The worst thing was my mind. I simply could’t retain any information, could’t remember details or people with specificity, couldn’t come up with anything interesting to say – ever. I did a saliva cortisol test to see how my adrenals were functioning over the course of the day and I was a little low in the AM, little high in the PM. TSH was 5.5 (little high), T3 & T4 were a little low & the Dr started me on NDT, Nature Throid (getting up to 32.5 mg) until my levels showed more in range but even then, I felt only marginally better. It was terrible. At this point I’d had colonoscopies etc. I still had some trouble eliminating. The gastro Dr said I must not be drinking enough water, but I really was. It was so frustrating.
A year later, still tired, more comprehensive bloodworm showed iron and D3 were really low, TSH 2.5, T3 and T4 okay according to labs but T3 on the low side of ok. I took things into my own hands, got some advice outside the normal physician realm. Here’s what I’m on now – and all my symptoms are pretty much gone, even my constipation.
AM: Armour thyroid 15mg with 12.5mg of Cynomel (T3 that comes in 25mg tablets, I just break it in half)
DAY: Thorne adrenal cortex (no medulla, so no adrenaline, and it’s raw), I take these copiously throughout the day depending on my patient load etc – probably use at least 4-6 a day most days. I still forget to take these on my day off which isn’t good on my adrenals.
and D3 varying dosages
PM: Floradix liquid herbal iron (dose varies depending on my cycle), and MK7 (vitamin K for absorption of the iron)
I can think! I have energy! I poop! I sleep through the night, mostly!! Good luck to those of you who suffered as I did.
One last thing, to those of you who are being told you’re depressed, that it’s not a metabolic problem – if you feel like the depression came as a result of your fatigue and is a result of that frustration then trust yourself! I can’t tell you how many times people told me I was just depressed. Made me crazy. Keep at it! Trust yourself! You’ll get there!
I’m 55 years old, female, diagnosed with Hashimoto’s thyroiditis in early 40’s. I was once active, working 12-14 hour shifts as an RN, then doing more physical labor when I wasn’t “working” and on my feet all day. I was also misdiagnosed with lupus at one point and eventually diagnosed with fibromyalgia. I have had several injections with corticosteroids in my spine over the past few years. I fell into an opportunity to try human Growth Hormone (hGH) in the form of injectable Somatropin. I knew that I was “guinea-pigging” myself in my desperate attempt to feel better, basing most of my symptoms at that time on fibromyalgia. I was reading a lot about hGH being produced during the sleep cycle and that people with FM didn’t fall into that phase of sleep at night. So, I decided to try hGH on my own. First it needs to be known that this is definitely growth hormone, from a reputable pharmacological source. Now, a question for Chris: I recently had my thyroid blood work done and for the first time I had a low T3 with T4 and TSH on the low end of normals. My T3 was 49 with a normal range of 100-200. I’ve never felt as rotten as I have over the past few weeks. No energy, muscle pain, thinking is foggy (at best). I was put on a Prednisone burst (today is day 3) and my Levothyroxine was increased from 75 mcg – 100 mcg (day 8). Is it possible that my use of hGH has caused the current problems with my thyroid? It’s been 1 1/2 years that I’ve taken it with dosing anywhere from 0.5mg to 1.2mg sometimes daily (Monday through Friday) with weekends off. Sometimes every other day dosing (M, W and F) with weekends off.
Initially I had GREAT results with the hGH. High energy, great mood, increased stamina, ability to sleep at night, decreased depression, muscle mass like I’ve never experienced in my entire life.
I always knew that I might be causing long-term damage or even the possibility of cancer or early death by taking the hGH but I was of the mind that I’d rather have 5 good years and die younger than to have 20 miserable years of intolerable pain and fatigue. But it’s now been about a year and a half since I started the hGH in varying doses (directed by myself!) – my physician is aware that I’m taking the hGH and has tested my IGF to be sure that I’m getting “the real thing” – which I am.
I will be getting a full workup of my blood hormones in a few weeks, to include adrenal functioning. I’m wondering if it’s time to give up on the hGH by slowly decreasing it prior to eliminating it? I know my source won’t be around forever and at some point in the not-so-distant future I’ll be forced to quit taking it.
Comments from anyone? Chris?
Hi Peggy Pearl, love the name by the way.
Some comments…long ago I was dx’d with fibro (it was my first dx), thankfully, by a fibro specialist. He explained, in great detail, that (and fibro community please don’t hate me for being the messenger) fibro is actually a symptom (pain) of some other underlying condition…and, again thankfully, he encouraged me to keep looking for what could be causing it. To this day I am deeply greatful for his sage advice. I share with you so that you too will (hopefully) keep looking…because the answer is there.
Regarding the low thyroid…that is very normal when one is suffering any illness. You may consider having your RT3 levels checked. The thyroid (primarily) makes T4, a storage form of the thyroid hormone…and the body (primarily the liver) converts it into T3, the active form of the thyroid hormone. However, it also converts some into RT3, permanently not-usable. Only the RT3 also docks in the thyroid receptors and blocks the T3 from getting in. In cases of underlying illness…the body often over-makes RT3 (above range)…and that can be a problem.
Regarding Lupus…even if they changed the dx…you may want to run two additional labs, the C3a and the C4a…these are specific aspects of your immune system and will let you know (since dx’s are often subjective anyway) whether or not you have Lupus of something else that can mimic it sans the organ injury. I mention because you sound like you are getting worse?? C3a will be higher in Lupus…and C4a in the mimic…the reason for differentiating them, is that the treatments are opposite each other…and either harming the other.
I know that many with fibro just want to feel better…often regardless of the costs, and I totally get it (am in same boat). But as someone who recently experienced the costs of horrible disfiguring and utterly embarassing dystonia (unwanted movements)…let me be the voice of some costs are not worth it. Sometimes it really is robbing Peter to pay Paul and you lose in the end.
While the cost may be prohibitive, my best pain relief comes from theraputic massages.
I also had VERY good luck with genetic testing (23andMe.com) along with a panel of labs to see what, if anything, was affected by the defects. Generally, the theory is to take whatever you would make after a defect…however, that only made me very sick…hence why the panel. The general panel was a UAA (urine amino acid), an OAT (organic acid test), and a neurotransmitter test by Pharmasan Labs.
What I found out was that I was not-making Taurine, and I was making too much Glutamate and not enough GABA…which likely caused the muscle knotting (and the fibro dx). Before the Taurine, I was needing a wheelchair and used a walker…after the Taurine it has been a steady (slow, but steady) improvement to where a year later I no longer need the cane. I also take an rx called Baclofen which is GABA with a little molecule added to confuse the neurons into accepting it (supplement GABA does not cross the blood brain barrier)…which stops the tightening and allows be to not be so curled up. I still need to stretch daily and work to regain what was lost.
Hope any of that helps.
Growth hormone can affect the function of most other important hormones. It tends to boost thyroid hormones, androgens (and I think estrogen), but lowers cortisol or increases the need for it. I believe it is supposed to increase conversion of T4 to T3. When I started GH (for GH deficiency) my doctor said I may have to reduce my thyroid meds by as much as 30-50 %. So far I’ve had to reduce the dose by about 1/6.
However, most of the other hormones GH affects also affect other hormones. If for you it happens to boost estrogen and lower cortisol more than it increases the T4 -> T3 conversion, that might explain the results you’re getting. You might need hydrocortisone, for example.
How much of GH are you taking (or were, if you’ve since discontinued it)?
My free T 3 was extreamly low, I was tired all the time, very moody, joint pain, dry skin, weight gain, and cold all the time. The doctor put me on cytomel 12 mg within the week I felt better, more awake, didn’t need my 32 oz of coke a day. Really everything got markedly better. Then after 5 months some of the symptoms returned. Took blood work again and my T 3 is good but my T 4 is below low. I am now starting on a T 4 medicine along with continuing my cytomel. Hope it puts thing to how they were for those great 5 months.
Hi Judy,
I am sorry that you are experiencing all this.
I would be very curious what your TSH numbers are.
It sounds to me like you have a classic case of down-regulating. Wherein the body down-regulates itself due to some underlying issue.
One of the first steps it takes is that the hypothalamus determines that it wants a lower level of T3…so the body (primarily the liver) converts less T4 into T3. If that doesn’t work, then the liver will begin over-converting T4 into what is known as RT3 (unusable hormone). RT3 will fill the thyroid receptors and prevent active T3 from getting in.
Since you probably still have a thyroid, the last ditch effort your body will take to keep your thyroid level where your hypothalamus wants it (in your case lower than normal) is for your thyroid to not-make T4…which sounds like where you are at.
Why the body down-regulates itself is not well understood…but it generally does so when you are ill. This is true of when we have the flu for a few days…and it is true when we begin developing a chronic illness. Often the first thing noticed is fatigue…and doctors most often check the thyroid when patients complain of fatigue…and due to the down-regulation going on, often rx thyroid hormone…as if that will help you stop being sick. It may improve the numbers, but it doesn’t change the status of possible illness developing inside one.
While I certainly think you should try the T4…I would caution you to do so with eyes wide open. IF your hypothalamus has down-regulated you (which is what it sounds like), your body will continue to make every effort to keep your levels low. This means that even with the T4, you will eventually need more and more…until such a point where your thyroid stops producing any. At that point, your thyroid will begin to atrophy…and at some point will no longer be able to produce thyroid hormones anymore, and leave you permently dependent on taking either synthetic or animal hormone.
I share that with you because…as most thyroid patients eventually find out, that man has not successfully reproduced nature at least as far as thyroid hormones go…and many (too many imho) thyroid patients (who are dependent on hormone replacement) experience ongoing issues. So just a word of caution.
Also, a suggestion that you may want to consider checking into whether you could be developing some underlying issue that is causing the downregulation. I hesitate to suggest that because it seems that doctors these days are more keen on late stages of anything and are generally not at all adept on catching things in the very beginning.
Hope that helps.
I’ve been following this thread. I have been experimenting with ways to limit or stabilize my dependence on T3 and T4 supplementation for several years. The most effective thing I’ve found so far is to follow the diet recommended at the end of the following article:
http://www.abioenergeticview.com/2-9
The author’s rationale in choosing these recommendations are explained in excessive detail in his book (free download) and all his blog and newsletter posts. I was able to completely flip my progesterone vs. estrogen ration within 5 days of starting on the diet he proposes.
I’m still experimenting with all the ratios, but it’s been more dramatic than any creams, pills, herbs or other diets I have attempted. . . particularly the parts about going starch-free, choosing types of sugar, and limiting unsaturated fats. Those concepts were all shocking to me, but I had immediate relief when I tried them.
Hi Mimi,
You are correct in assertaining that no one knows what to do about normal TSH and normal T4 with low T3.
Normal TSH (the pituitary’s request for hormone) suggests that the body does NOT want any more thyroid hormone. Normal T4 suggests that there is adequate amount of the storage form of thyroid hormone for the body to convert what it needs when it needs it.
Low T3 (in the face of normal TSH & T4) is almost always a sign that you have some kind of illness going on in your body, possibly low-grade. In other words, for reasons no one knows or understands, the body has down-regulated itself…and one of the ways it does so is by making less T3. My own personal theory is that it does this to make you tired so you will rest in order for your body to divert its energies to healing you. But yes…no one knows why it does this. And, in addition, no one (in the medical field) cares because when you treat/heal/correct the underlying condition…the body will start converting more T3 all on its own.
Now, no one likes that…particularly the chronically ill…because that means being tired for years…so we want to push nature, to take control of things that are likely out of our control no matter what we do.
So…in this situation (normal TSH, normal T4, low T3), you have 2 choices: to supplement T3 or to not supplement T3. Most drs will NOT supplement as this is not an approved standard of care (yet), and they risk their license to do so. Realize, your TSH is the pituitary saying that your body absolutely does NOT want any more thyroid hormone. Also, few want to do the work to investigate what could be wrong with their health causing the down-regulation.
There are a number of inherent issues and dangers with supplementing T3. But, first of all, it is important to understand how the body works. The liver, not only (primarily) converts T4 into T3…but, when it is working correctly, sweeps our blood of excess hormone and removes it. Therefore, if your body set its levels of T3 low…it will 1) not convert more than that set point; and 2) will sweep any excess over that amount out. Meaning, even if you take some T3…the liver will remove it.
Now, a great many people’s livers are not working correctly…allowing them to have an excess of T3 (hyper-thyroid)…which is a deadly condition (another reason drs do not like to supp T3). Not only can it kill you, but too much T3 leads to a demineralizing of your bones (osteoporosis).
What I have found, from experience (I do not have a thyroid and am on T3 only), is that the symptoms of too much T3 and the symptoms of too little T3 are identical…and, unbeknownst to most people, too much T3 causes weight gain as well…most believe it causes weight loss. It causes heart palps, which in some can lead to heart attacks.
There are numerous other dangers…but the point being is yes you are right, NO ONE knows…the medical community doesn’t know…and worse, what things we have we can do are imperfect and, at best, dangerous. So all you have is a choice, to supp T3 or not to.
Lastly, realize that the lab normals are arbitrary. They are for reference only. At best, man can only guess about nature. Your body (nature) knows best what it needs. It can be difficult to trust one’s body.
Best of luck to you.
I read all discussions. They all led nowhere. No one seems to have any idea what to do about low t3 levels in light of normal t4 and TSH. it was not helpful.
Hello,
I was on 240mcg of Armour for several years and labs were is ok range but still presented with hypo symptoms. Started T3 Therapy mid December and worked up to 90 mg. Stayed on this for over a month before dropping down to 75. Tried 60 at night in the split dose for a few days but felt less well. Plan is to continue on 75 bid until I get hyper symptoms. Have not had labs since I started this . At the onset my RT3 was 21 and FT3 was 2.3
My question is this. The last week-10 days I have noticed that I have much less strength in my arms. I play tennis and have been doing yard work – moving the trampoline, etc and I feel like I have about half the strength that I used to. Not working out per se during this time, but active.
Could the T3 therapy be causing this?
Thanks
Hi Pam,
That is hard to say…as many things can cause weakness. The weakness is something that you should keep your dr informed of.
That said, if your body (and particularly) your liver is working correctly, then you should never have symptoms of too much. The liver’s job is to sweep the blood of excess hormones…and it does so rather quickly.
What I can tell you from experience that the symptoms of too much T3 and too little T3 are virtually identical…and that it is possible to paradoxially gain weight on too much T3. Although that is not much help.
Sorry I cannot be of more help.
This is a link from this web page explaining the auto immune reason for low t3. Vitamin D, etc is recommended for treatment options Maybe the clearing I felt through my head with augumenton was clearing pituitary issue explained herein.
http://chriskresser.com/low-t3-syndrome-iv-an-autoimmune-disease-youve-never-heard-of
Great links, thanks 🙂
The one problem with the Vitamin D studies…and this is nearly universal…and renders them false on their face is this. The Vitamin D that they test is 25,D…and this tests yoru levels of D2 and D3 and adds them together. D2 is Ergocalciferol; and D3 is Cholecalciferol
However, 25,D (Ergocalciferol and Cholecalciferol combined) are the STORAGE FORM of Vitamin D…which is comparable to testing only T4. The salient fact missed (by doctors and researchers, not to mention savy internet readers alike)…is that they MUST BE CONVERTED in order to be used. Since no savy internet reader would ever advocate for testing T4 only and dosing based on that…they should be applying the same logic to the Vitamin D issue.
It takes two whole steps for Cholecalciferol (D3) to become active/usable. First the body converts Cholecalciferol (D3) into Calcidiol…then, Calcidiol finds its way to the kidneys where it is converted into the ONLY USABLE form of Vitamin D, Calcitriol.
the 1,25 D test tests for Calcitriol…the ONLY USABLE FORM of Vitamin D.
I know, I know…many well loved doctors mistakenly call D3 “active”…but they are wrong. Both D2 (plant source) and D3 (animal source) are not-active. The mistake comes in because an old study found that we absorbed D3 slightly better than D2…but not enough so that Vegetarians need to concern themselves about it…and taking D2 is just as fine.
While I personally cannot believe, or rather am deeply disappointed in, all the doctors who make this rather huge mistake…I do realize that it will take them about 5 years to catch up, but that one day they will…I would like tothink that the savy internet readers will get there quicker than the medical world.
However, because of this egregious mistake…ALL STUDIES who only test 25,D are false on their face.
As I said previous, those with a certain genetic mutation (that would never cause anyone a problem and, because no one tests it would never be the wiser), make too much of the enzyme CYP27B1 which converts D2/D3 (not active 25,D) into Calcitriol (active 1,25 D)…so that they will ALWAYS, ALWAYS, ALWAYS look low on the 25,D test…but will, in fact, be IDEAL in the 1,25 D test.
As well, those with bacterial infections…even the low grade ones…will also over-make the enzyme CYP27B1 and over convert 25,D (not-active) into 1,25 D (active). Because Vitamin D is an endocrine hormone…and a steroid (aka immune suppressant)…this is a very critical issue…and the effect of the erronous testing, and erronous results, results in people with low grade bacterial infetions being told to take Vitamin D…which supresses their immune system and makes them worse because it allows the bacteria to florish.
All I can say is shame on doctors who should know better. They either should know (because they studied this), or reasonably should have known…which puts this subject and treatment in the legal catagory of negligence.
So please try not to be misled by studies that use this erronous information.
In the case of autoimmune (which you would only know with an ANA/FANA test AND the specific antibody tests)…then, immune supressants work wonders. Vitamin D is a steroid in the same way prednisone is. But for those with a bacterial infection…this is the worst thing possible. The only way to test for and know if a true def exists is with the 1,25 D test that doctors hate to give. Why? I have no clue…but then much of what they do makes no logical sense.
Hope that helps (maybe not you, but the other readers). 🙂
Would lyme disease be considered autoimmune or bacterial? Seems it’s bacterial infection that causes autoimmune.
Hi Mary,
I thought that is what I said(??)…yes, the belief is a bacterial infection that can become autoimmune. However, I do not know anyone who is treating their Lyme with immune supressants.
That said, very little is known or understood about Lyme at this time (although many act like they know)…I believe that we are still in our infancy of understanding it.
Lyme is believed to be a bacterial infection…and, about a third of late stage (disseminated) patients seem to have significant improvement from antibiotics. The other two thirds, however, do not seem to improve much from antibiotics and generally grow worse (overall) on them calling into question whether it truly a bacteria?
The other question regarding those who get worse on antibiotics is, has it become autoimmune? Again, no one (unless things have changed recently) in the Lyme community would reccomend immune supressants autoimmune or not.
That said, some have greatly improved on anti-protozoa meds…begging the question.
As well, many who have late stage Lyme are positive for viral activity…likewise, begging the question.
What I do know, is after a year and a half on antibiotics, that no one knows (yet) any agent that kills it 100% effectively…and then there are the 77 studies that those who argue for the long term antibiotics hold up showing that even after years of antibiotic treatment they still pull out live Lyme spirocetes. For me, this just begs the question…maybe it is not a bacteria, but some other (viral, protazoa, parasite, etc) critter in need of a different anti-…but that is just me.
I do believe that within the next 10 years (and certainly by the 20 year mark) they will discover what kills Lyme…and by the what kills it (ie anti-protazoa) we will better know what it is.
I also believe, that those who are better on antibiotics should be given them for as long as they are needed…and I am deeply grateful that some are helped. For the sake of the rest, who do not do well on them…my hope is that people keep looking.
🙂
Here’s our lab’s explanation:
This is not a valid measure of Vitamin D Stores.
It is the active metabolite of Vitamin D, which may be elevated in patients with granulomatous disease and hypercalcaemia. Apart from the rare indication in patients with hypercalcaemia of unknown cause and a suppressed parathyroid hormone there is little or no clinical reason to request this test.
For further information contact a Chemical Pathologist or Endocrinologist
I guess it’s the same scenario for T3 then. It doesn’t measure stores of thyroid hormone (T4), just the active hormone and yet is thought by many doctors to be a worthwhile test for management of patients with known thyroid disease. Go figure…
Hi Honora,
That would almost be funny if it wasn’t so sad.
For everyone else that hasn’t caught the issue yet: 25,D (the combined cholecalciferol (D3) & ergocalciferol (D2), collectively known as calciferol), which is just a metabolite or precurser (pre-vitamin they call it) of usable Vitamin D, but is NOT the usable Vitamin D (yet). Cholecalciferol (the D3 you take) is converted in the blood stream to create Calcidiol (likewise a precurser, or pre-vitamin to active Vitamin D). Calcidiol is then converted, in our kidneys, into Calcitriol…the one and only truly active and usable Vitamin D. This is tested with the 1,25 D test.
In two situations, bacteral infection and certain genetic defects (that you would not notice), the body makes too much CYP27B1 (also called 25-Hydroxyvitamin D3 1-alpha-hydroxylase) which is the enzyme that converts D3 (unusable) into usable Calcitriol…resulting in an always low 25,D test…and a high or normal 1,25 D test. However, by whatever stupidity, the medical world only ever tests 25,D….which results in a lot of people thinking they have low Vitamin D, when in fact, they may not. In order to properly know, one must test both 25,D AND 1,25 D.
And even worse, not only is our lab reluctant to test 1,25 cholecalciferol but it is does, it charges around $500 to do so.
Ugg! 🙁
oops! If it does…
Treating thyroid without T4 is tough, without a doctor is tough. When I first started on t4 levoxyl, months later I noticed that my T4 was on the high end and my T3 was at the low end of the reference range. My toes were still purple and I was still not saying things right sometimes. I talk to the doctor about it and asked him about Cytomel. I could not tolerate Cytomel because it was not time released. It would make my heart race for a couple of hours and that’s all I got out of it. I try splitting the pills and it really wasn’t working. Went back to armor split the pills because I was getting tired by 2 o’clock in the afternoon and it didn’t work either. Then back to Levoxyl and time released compounded T3. It worked. I was at a ratio of 2 to 1. When I stopped drinking tap water -purified instead. My T4 levels jumped up and my Dr reduced t4. I stopped taking T3. . I am not good On T4 112 µg alone. Recently I found out that my vitamin D was below normal. I have been taking vitamin D for about three days and I do not feel cold at 63 degrees…outside temp. I read an article that suggested that people who have autoimmune thyroid disorders should be taking vitamin D supplements even if within reference rage. I am taking 2000 IU’s (1000 twice per day) at this point even though the doctor suggested 1000. My skin has been dry (not from vitamin d) and I have noticed fishscale type appearance to my skin. Not terrible, but it looks crinkled. I have actually had dry skin like this for more than a few years. The article also suggested that vitamin D supplementation can help to convert T4 to T3 more efficiently. High hopes! At this point I am able to wear a short sleeve shirt and shorts when it’s 63° outside and I am comfortable. Last week I felt cold when it was 70° in the middle the day in the sun. I was biking for 25 miles and it took 2-3 days for my t3 to catch back up. Slept a lot. Will be interesting to know if intense excerises will be better without the t3.
Hi Becky,
Thanks for sharing your experience and I sure hope it works out for you.
Had some thoughts to share.
One is, you may want to consider trying a T4 called “Tirosint”…it is T4 with no fillers and may clear up some of your issues. It is a name brand so your doctor will need to make an argument for it to your insurance.
You are not converting a whole lot of T3…and, although many people try a gamut of supplements, the most common cause for not converting much T3 is some form of illness going on. As Chris writes in this article, the low T3 conversion will clear up when the illness does and so may not need to be treated. As someone without a thyroid, and who makes high amounts of RT3 (over 180 points above range) and collapses when on T4, is chronically ill, and who takes T3 only…my view is that it is unrealistic to ask someone to remain hopelessly tired and hypo for years just because they have a chronic illness.
The problem of hyper symptoms upon taking T3 are not uncommon…but do also point to a possible liver problem. In a properly working body, the liver would flush any excess T3 out of your system within a minute or two of it appearing in your blood stream…and then, of course, you would grow increasingly hypo as your body uses the T3. There really is NO great work-around to this issue…T3 needs to be taken throughout the day to keep levels up. I have no experience with the timed release so I cannot speak to that…I take mine 10-12x a day and it works well that way.
The issue of Vitamin D is a deep and confusing one. First off, Vit D is not a vitamin at all, but rather an endocrine hormone…a lot like thyroid hormone. When they test your Vit D levels, what they are testing is 25,D…this is a STORAGE FORM of Vit D…and is the exact same as testing T4 only. The active form of Vit D is the 1,25 D (same as T3)…and they hate testing this in the same way they hate testing RT3. However, I strongly advise getting BOTH tested (25,D + 1,25 D) before supplementing. I also am deeply concerned that anyone is recommending to just take Vit D anyways because it is a fat soluable supplement and excess is not flushed away, but can build to toxic levels. The reason for the dual testing is this…people with certain genetic mutations (that you would normally never be aware of) AND those with bacterial infections will make too much of an enzyme called CYP27B1…this is the enzyme that converts 25,D into 1,25 D. What this means is that these people will over-convert 25,D into 1,25 D (like those who over-convert T4 into T3). Now, most who do this will have chronically low 25,D (the one they test) and perfectly ideal 1,25 D (the one they do not test). However, if you are sick and doing this…you will over-make or over-convert 25,D into 1,25 D and have too high 1,25 D (the one they don’t test).
While this is not a huge problem for those who are autoimmune…because Vit D the endo hormone is a steroid and immune suppressant…it IS a huge problem for those with bacterial infections because excess Vit D will suppress their immune system’s ability to fight the infection.
They call the issue of low 25,D (the one they test) and high 1,25 D (the one they don’t test), the “Vitamin D Reversal Pattern”…of which I also have. For me, who like you was also tested and found very low, tried taking Vitamin D…feeling great at first and then very tired and sick, only to feel better again when I stopped taking it.
I advocate for the dual testing because I was so shocked when I learned about it…and especially because no one who is in the know now on thyroid issues would only ever test T4 and dose based on that, that I find it sad that doctors are still only testing 25,D and dosing based on that alone. I know that they will catch up eventually…they just haven’t yet.
I am not saying don’t supplement…only adding so if you end up not feeling good supplementing, that there may be a reason for that.
Lastly, the liver (primarily) converts thyroid hormone. I don’t have any suggestions for what you can do to help or support your liver. And just adding again, that low T3 when T4 is fine or high, is generally a sign that you are sick with something…and is likely to remain like that until you fix the something else.
Best of luck.
Sick with something…? I have osteopenia. Triglycerides are pretty Low-50, and DHL is high end of range. Liver function results are normal.
How is your tsh level? Mine was below normal as it has been since taking thyroid replacement. My new dr. Is intense about it and wants to reduce my t4. My t3 is 83 with the range of 78-181 so if the dr reduces me to 100 mcg makes sense I will be t3 deficient the next time I’m tested. Other dr didn’t care about tsh. I tried tirosint and previous dr tried to make a case for it but ins wouldn’t cover it-$85/mo. Some Walgreen’s make compounded time released t3, (doesn’t have to be refrigerated)but it has been hard working with dr’s to get to that point as of yet. $35/mo….
Anyway, I did well on t4 and compounded t3. Went to jamaica, frig broke and my t3 ruined so I went days without, felt fine until t3 dwindled and here I am trying to working it out again after 7 years of doing well.
Let me know if you can come up with any underlying disease based on this:
The thyroid problem was triggered by a sore throat in 2002 that got worse over 2-weeks, amoxicillin, then cortisol, then z-pack made my tonsil swell tremendously. Ent gave me augmenton and it resolved. For the next 3.5 years my dr did not catch that I was hypo even though I visited frequently with many problems, developed tennis elbow in 2006 and was prescribed 3-4 weeks of pred and went hyper-(developed bump on neck-nodule and made appt) doc didn’t catch it and put me on t4. After ramping up from 25mcg to 100 I couldn’t tolerate t4-had hyper symptom again. Of course the first time I went hyper I didn’t know that It was thyroid storm-just knew if I didn’t lay down and stay still I would probably die. I was not on t4 yet due to testing. (Uptake tech asked me why I was there, told him hypo and he told me I should get another blood test- but didn’t tell me I was producing a lot of t4 on the uptake). Asked doc at that point If he thought I could be hyper instead of hypo. He said there is no way and did nothing else but hand me my first samples. So, I was in myxedema crisis, and came out of it in not such a graceful way. If diagnosed before the pred, I would have been admitted to the hospital.i was 112 lbs and had water retention. I even tried to tell the dr when I went in for tennis elbow that things were not right an he basically ignored me. So, I read about treatment for myx. Cortisol, high levels of thyroid and antibiotics. I got pred, went hyper and requested a round of augumenton after discussing all this with the doc at the time. While taking aug, I could feel a sensation across the top of my head like something was clearing out-only went on for a couple of days.
Oops-HDL
Hi Becky,
Hard to say what the underlying illness is to be exact…however, as we share a number of similarities, I will say that there are a great many thing going wrong with people these days that haven’t made it into “standards of care” (yet) so doctors don’t know about them. Sort of like workers who are like, “if it doesn’t come up on the computer, then they don’t know what to do.” You probably experience this as well, if you don’t fit perfectly in a dx box…then they have no clue. It is a challenge to be patient with the drs. The current “standard of care” for thyroid that they must follow is to dose based on TSH…it is a challenge to find a dr that will operate outside of that. Unfortunately, this assumes that 1) the pituitary/hypothalamus is working correctly; and 2) that the only thing wrong is the thyroid. Never, ever have I seen a dr or internet thyroid group talk about the liver’s involvement in hyper-thyroid since hyper is ultimately a failure of the liver to remove the excess hormone. Many people pay for cash-only drs. For those of us who have to depend on insurance covered drs, my suggestion is trying an “integrative” dr…they try to get to the bottom of things, treat the whole system, and can use supplements as well as rx’s…and are far more likely to use T3 and dose based on how you feel.
When on T3 only, my TSH is all over the place…less than 0.1, less than 0.1, 9, 14, less than 0.1, 17 (normal being 0.5-5.0). all in a span of 6 months on the exact same dose.
The lower bone density sounds very much like hyperthyroid (and too much T3)…am guessing you have had your alkaline phosphatase levels checked. Mine are also high…only my dr thinks is gall bladder related which can also cause that.
The liver tests they run are actually liver death/damage numbers and not for function (yes, stupid, I know). Unfortunately, I don’t know what the function tests are…but do know, in the basic panel low BUN and Creatinine together = liver; high Alkaline Phosphatase = liver (also bone demineralization); and higher than normal ALT = liver. Mine are all wonky…but only slightly so. Your cholesterol numbers are great…which the liver makes…it would suggest that it is healthy.
No one seems to know by what process (exactly) the body down-regulates during illness. They see the after-effects (low T3 et al), but they don’t know how or why. I imagine that something is instructing the liver to make less T3 (or, to remove more T3). Not knowing what it is…no one knows what to do about it. Many say to take supplements of the things you need to convert…but, poor conversion is rarely due to def. Also, many things one is told to take (selenium, Vit D3, etc) has the exact same symptoms for too much as for too little…esp selenium. My recommend is always test to ensure def before taking…esp as now that I have learned about the genetic stuff, supping things can really make a person sick.
Like you, I have chronic tennis elbows…started from muscle knotting in my forearms. I get cortisone shots, this helps with knotting all over my body. My dr gave me Cortef based on my improvement from the cortisone shots. I still take a partial pill once or twice a month to keep the knotting down. Eventually, my body became very tight and physical therapists had to stretch me out. My doctor gave me Baclofen which is GABA with a little molecule added to confuse the neurons into accepting it. Later on, a different dr I see who does the genetic stuff, ran a neurotransmitter test from Phramasan…this showed that indeed I was making too much glutamate (turns muscle/tissue on) and not enough GABA (which turns them off). I tried all the various GABA supplements, but they did not help…the baclofen works great and is cheap as far as prescriptions go (I think 11$ a month). So, just a thought on a direction you might pursue.
On the same line, my cortisol is fine…but by the same neurotransmitter test, I am not making adrenaline well. Everyone seems to know what to do for low cortisol…but no one knows anything about what to do re low adrenaline.
You mention needing to lay down or die…omgosh, I feel like that so often also…however, until you mentioned it, I had not thought of that as thyroid related. To me it feels like my body doesn’t make the chemicals it needs to support life…and if I do too much it is like instant forced need to sleep to restore.
Like you, I also have water retention.
The sore throat suggests to me two possibilities…it is common to both autoimmune and infection. As well, many in the autoimmune community believe that the autoimmune condition is caused by an underlying infection of some nature. That you improve with antibiotics suggests some kind of low grade infection going on.
I would be very curious your temp. If it is lower than normal, this would suggest Lyme.
However, that said, my first thought on low grade infection is to wonder if you have recently had any vaccines? They don’t tell you this, but they can cause a permanent state of low-grade infection in adults. The MMR vaccine used to be attributed to chronic fatigue syndrome…is a virus, but operates in the same way, a permanent low grade viral infection. The other thing it suggests is Lyme disease. Unfortunately, the screening test for Lyme only has a 35% chance of picking it up. The gold standard test for Lyme is the Igenex test…they don’t take insurance so it is $260 upfront and then insurance reimburses. Your dr would have to get the kit, draw the blood, and then you send it in. Lyme is very insidious…and can mimic so many things. For me, the main symptom was that for years I never got sick and my temp was a degree cold. There seem to be 3 kinds of people with Lyme…1 who gets better on antibiotics (and benefit from long term antibiotics); 1 who goes up and down on antibiotics; and 1 (like me) who get worse on antibiotics. Lyme can turn into autoimmune. The one benefit to a Lyme dx, is that you have a running chance of knocking out the underlying infection of autoimmune…imho…with the antibiotics.
Augmentin is not usually used to treat Lyme…but that you improve strongly suggests bacteria of some nature.
If you haven’t yet…you may ask them to run these tests:
ANA/FANA (for autoimmune)
RA Factor (also for autoimmune)
C-reactive Protein (for inflammation)
SED Rate (for inflammation)
CD57 (immune response, low if Lyme)
C4a & C3a (immune differential between Lyme & Lupus)
CBC w/ Differential (will tell you which white blood cells are most active)
Blood Smear panel…not sure what it is called exactly, but will tell you viral or infection
You also might get a test of the usual suspects like EBV.
The two immune tests specific for Lyme are covered by insurance (although you may need an order for an outside lab, like Quest), and if suggestive of Lyme then would warrant the Igenex test…if not, then you can save the money re skipping the Igenex.
Beyond that…re hypo/hyper thyroid, which you seem to be swinging…the liver should sweep the excess within minutes of it being there…meaning, no one should ever be in a state of hyper for long. I know mine used to…not so much now. No one knows the process by which it does this…or, how to help it do this…drs don’t even look there, people on the internet (smart as they are), took years to realize that the liver was even involved. Unfortunately, I don’t have any advice either…as I am still trying to puzzle that out for myself.
It does, however, also make sense that our body’s need for thyroid varies each day…even hour to hour. It might work better for you to take T3 once every few days and wait until you feel low to take one dose again?? Just a thought.
Hope that helps. 🙂
I haven’t had health insurance in a decade, so I self-medicate based on a lot of experimentation. . . I am extremely sensitive.
My current dosage:
88 mcg Eutirox (half tablet 2X daily)
a small sliver of a 2 grain tablet of Nature Throid 2X daily
Half a Kelp tablet in the morning.
If it gets a tiny bit low my hair begins to fall out, I get very “still” feeling, constipated, and the two outer fingers on my hands go numb when I sleep.
If it gets even a tiny bit high (especially with the T3) I get sweat on my upper lip, I can feel my heart beating hard, and sometimes there is menstrual spotting.
I have been on a gluten free, low starch diet for five years. I still have some symptoms that persist regardless of everything I’ve done: acne on the jaw line, hirsutism, some degree of hair loss is constant, and I rarely menstruate.
I would love to hear about more ways I can treat this without thyroid replacement, since it is very difficult for me to get ahold of that without a doctor.
I had RAI for Grave’s Disease in 1993 so I have 20 years experience trying to find a good solution to replacement thyroid. I have been diagnosed with carpal tunnel in both wrists twice. Once in 2008 and again recently. Both times, it was when my endocrinologist did not support me taking a small dose of T3 in addition to my T4 medication. I have chronic pain issues, well documented. There is no question that my pain is worse when T3 is removed from my Rx. My current endo refuses to even test for total or free T3. My mother had this type of skeletal pain and so does my daughter. Long family history of thyroid disease. I agree it is an inflammation issue. It breaks my heart to be on ibuprofen and narcotics when I feel a small dose of 2.5 mcg of cytomel twice a day could resolve much of this pain and has in the past. We don’t all fit inside the same bell shaped curve.
Oh Annie,
Your story breaks my heart…and I am so sorry that you are having trouble getting some T3. I am also very interested in your T3 pain connection as I too have a lot of pain, and tendonitis…and, like your carpal tunnel, I have chronic tennis elbows that I get cortisone shots for.
On getting some T3, as you have already discovered, most endos will not give it. You may have better luck with an “integrative” doctor. Another solution, although not the best one (but in a pinch), many psychatrists dose a small amount of T3 for depression. I know, it baffles me that they and endos don’t talk…but such is the practice of medicine these days. Integrative doctors usually operate as primarys, they are more well rounded and try to get to the bottom of things.
For me the pain thing went opposite to yours (although I still see the T3 connection)…mine started when I was put on T3 only, with the tennis elbows. Since then all kinds of bone, muscle, tendon pain…and my body tightened up (a lot). Two diagnosises…a gaba/glutamate imbalance (make too much glutamate and not enough gaba)…and I was dx’d with late stage Lyme disease. The screening test for Lyme only has a 35% chance of picking it up…so the gold standard for discovering it is the Igenex Lyme Screen which is $260. Your insurance will remburse you (unless you have state aid in which case they don’t)…and is well worth it. Other screeing tests (and easier to get) are the CD57 and C4a. If the CD57 is low you probably have it and if the C4a is high you probably have it…and then it would warrant paying for the Igenex test.
I mention this because two of the antibiotics my doctor used, Cipro and Clindamycin, took away 80% of my pain…esp the bone and muscle pain. Just something to consider.
Please try seeing other doctors. You can make “interview” appointments where there is no exam…just you seeing if you want that doctor. Many now are on T3, so there are more of them out there than before. Sorry your endo is such a pill about it.
Hang in there,
Faith
It’s a far better idea to take bromelain than NSAIDs or steroids for things like carpal tunnel and tennis elbow. It’s much more effective and much safer. You probably need a dose of 500-1 000 mg a day, in at least two doses. It’s very safe. If you get diarrhea you’re taking too much (at once).
Of course it’s better to get to the root of the problem – when I was hypothyroid I suffered from shin splints, plantar fasciitis and Achilles tendinitis. But at least bromelain is far superior to Rx anti-inflammatories.
I would agree with that…I think I was referring to cortisone shots/injections…you get them 1x every 4-6 months and it takes all the pain away. 1 dose every 6 months, at least to me, is far preferable to anything one has to do daily…but that is just me.
I would also agree, getting to the root of the problem…and am again, amazed to hear yet one more person connecting tendon issues to hypothyroidism. Thanks.
If you knew how dangerous/harmful cortisone injections are, I doubt you’d be saying that. In regular use steroid treatment always has its side effects and risks, which tend to be hefty. Some of them are even unavoidable.
Hi Maija,
Again, I was speaking only of the injections…which I do get and which I do believe that I understand the risks…which, to me, are negligable in comparrision to daily pain killers which are also something I take.
Injections in elbows, my understanding is that I risk only the tendon it is injected into…to which my doctor has stated that we have other tendons that do pretty much the same thing, so that the entire elbow is not lost just that one tendon…and, the benefit is that I am pain free for 6 months.
Daily pain killers, I now have liver damage…and I don’t even take them that often. If I try over the counter I get stomach pain.
Also, to explain, I have pain other than my elbows (hence, painkilles)…and, when my elbows are bad I cannot lift a cup or spoon to my mouth, I cannot use a cane or walker so I cannot walk safely, nor can I pull my pants up or down to go the bathroom…so, for me, I weigh nearly complete lose of use of arms…with the possible of loss of one tendon.
So, for me, I will continue to choose to feed and dress myself and take what seems, to me, a very small risk. I will also, continue to choose, the 2x year shots over more intense multi-daily pain killers.
As well, before you down people’s choices…many with autoimmune conditions need those daily immune supressents…and I continue to receive tremendous relief from systemic muscle knotting by taking a small dose of Cortef monthly…likely due to not making enough on my own.
That said, no medication…or over the counters…is without issue. And, for what it is worth, I a told that the surgery they would give me for my elbows is clipping the tendon…the very same tendon that could be lost from the injections…which leaves me still siding with the injection. I have been getting then for three years now and I haven’t had any issue…and have even had the added benefit of the relief from the systemic muscle tightening. We will just have to agree to disagree.
Best of luck.
My T3 still has been low with migraine like symptoms every ten days..then three days of feeling motion sick, lightheaded..then ten days of normal “woozy”. Something new I noticed is on my lower lip, inside membrane is a series of four pin head size clear bumps..all straight in a row. The soft palate in front of my tonsil (in the fold) also has a small bean size nodule that seems to put pressure at times on my ear. Have had doctors look at them..the one they say looks ok and the other can only feel, not see and send me on my way. My question…could this be any type of autoimmune disease as I already have hashimoto? Would appreciate any input.
It seems like something the doctors know nothing about, but you shouldn’t let them just brush you off. Ask them to test you further or to refer you to a specialist.
I agree with the progesterone hormone comment. Even if it’s natural progesterone. It caused me issues also. One other questions, my T3 was extremely low but TSH normal. Now on Armour Thyroid and TSH is too low now. Also, my T4 lowered. How do you get the right balance? I don’t want my bones to demineralize.
Hi Mary,
I third the taking of any endo hormone without proven need as it is just such a sensitive and complex system.
TSH low suggests your body doesn’t want more thyroid…and it is interesting that you are also low T4. That said, overall in the grand scheme of things, T3 is the number you need to be most concerned with.
Armour often uses fillers that inhibit thyroid hormone…that may be one cause. Another cause may be that you have thyroid autoimmune and are thus attacking the Armour.
The test for the bone demineralizing is the Alkaline Phosphatase…which i personally think is a good idea for people who are on T3 to run every now and then (especially if taking more T3 than is warranted by serum thyroid levels).
That said, I am one of those people who has my TSH waffle from less than zero to 17+ and has no bearing on serum thyroid hormone levels. I strongly suspect that some people have faulty pituitary/hypothalamus’s. However, testing for that (I am told) is not very simple.
Not sure what your doctor looks at, but your T4 being low (to me) suggests that you are on too low a dose.
Hope that helps.
Wow, thank you for that information!! I did have my Alkaline Phosphatase tested and it was on the low side (36), so I guess that means it is not causing demineralization. I do have Lyme Disease so you are correct on the autoimmune part. I’d like to up my dose of Armour, but it causes me to get shaky and tired on higher doses. Can having a low FT3 cause physical issues?
Hi Mary,
and you are welcome. The tired and shaky part means you are getting too much and, for whatever reason, your liver is not clearing it as quickly as it should. Normally, the liver clears out excess thyroid hormone.
Ah…the Lyme disease is why you have low FT3, and you will likely have low FT3 as long as you are sick (this is what he says in the article we are posting under) and will reverse itself when you are well (if anyone ever ets well from Lyme).
No one really knows why the body sets FT3 (the nly one you use) low when one is sick…only that the body does. It is part of how the body down-regulates itself. My thought is that it does so to make us tired enough to lay on the couch to divert our energy to getting well. Apparently the body does not have a program from long term chronic illness. I wish I had a better answer for you, I too have Lyme and suspect that this is something we will deal with for maybe our whole lives. Sorry you have Lyme.
Have you had your RT3 tested yet? If not, you may want to. The body will increasingly turn T4 into RT3 when one is sick…same down-regulating process. The only way to make RT3 is with T4 (mine gets super high), so I take T3 only and do pretty well on it.
Anyways, I hope that helps…hope your healing journey with Lyme is going well and continues to go well.
I have found some good help in doing the genetic testing from 23andMe.com. From there, running the raw data through Genetic Genie or Livewello…and from there reports, having those things tested (rather than just taking the stuff they say which made me sicker)…from there I found out that I was not making a few things and by taking those things feel worlds better.
Hang in there. 🙂
Thank you for that info. I noticed that you recommended testing for Epstein Barr Virus. I did get tested for that and HHV-6, and they were both high. My EBV IGG was 6.09 and my HHV-6 IGG was 6.95. Do you know if this is of any importance? I’m not sure I understand the significance of these. Thank you again!!!
Hi Mary,
You are not the first person with Lyme whom I have heard has viral activity going on, a significant part of the population with Lyme does as well. I also do, only not that much. I would be most interested to find out how you did on antibiotics (if you took them). When I was part of Lyme groups, I noticed that about a third of people on abx got better right away and all uphill from there; one third waffled up and down; and one third got worse. Since I was one of the ones who got worse (1.5 years on abx), I have often wondered about why. My ANA and RA was positive and so I considered autoimmune being the reason. However, I have also speculated whether Lyme may not be a bacteria but some other classification and thus need something other than abx. One of the things I have wondered most about is the low grade viral activity so many with Lyme had. What I didn’t do was correlate viral activity with those who do worse on abx.
Either way, any illness will cause the body to down-regulate. It is just that most illnesses last only a short while, so RT3 goes up and FT3 goes down, and then go back to normal when the person recovers.
The problem comes in when someone has a long term illness because RT3 stays high (blocking receptors) and FT3 stays low for extended periods of time.
Correlating the experiencs I have read in thyroid groups, there doesn’t seem to be a way to correct it as far as I can tell…if it has to do with illness.
The reason for this, I suspect, is because when ill the hypothalamus sets the body’s level of FT3 need low…and the entire body works together to make sure it stays at that level. Meaning, the thyroid will make less and less (if one still has their thyroid), and the liver will clear the excess.
What I usually tell people is try the T3 or whatever you are taking and see if the levels go up. If the FT3 stays low despite increasing doses, then you can be pretty sure the body is setting the level low. If, on the other hand, the levels go up, then it is a pretty clear indication that the thyroid (and liver in terms of T3 conversion) are failing their job and supping is necessary.
The article here, he wonders whether low FT3 should be supped or not. I think he sides on not (been a while since I read it)…I am not so sure since no one seems to have come up with a plan for those of us with long term illness.
Hope that helps. 🙂
Wow! Thank you very much. You’re so helpful. I have a difficult time getting answers and understanding everything. I could go on and ask you so many questions I have (especially about Lyme), but then you would be busy writing back all the time. I REALLY appreciate your input!!!
Hi,
I ‘d like to warn people who might be prescribed Progesterone by a well meaning naturopath. I have a thyroid condition (I suppose) , my TSH was 12.5 so I took Synthroid for over a year..it stopped working recently so now I switched to NDT. Before doing that, I had to increase my dose of Synthroid every 3 weeks trying to control a multitude of symptoms. To keep this short, my ND said “lets try progesterone” because my problem might be related to Estrogen dominance. I took Prometrium 100mg once a day for about 2 weeks. I noticed increasing fatigue but thought that was normal. Eventually, I couldn’t vacuum the house without having to lie down afterwards. Then, out of the blue, I almost fainted in a kind of cardiovascular meltdown attack , low blood pressure, profuse sweating, hard to explain but a severe and acute incident. Stopped the Prometrium after that and it took two weeks for my circulation and cardio-vascular system to normalize. I was dizzy with low blood pressure for 2 weeks and it felt like my blood had trouble reaching my extremities throughout. Please be careful with this hormone. A friend of mine had a similar experience but her blood pressure rose to lethal levels. We were both diagnosed with Hashimoto’s .
Also, on Synthroid, I had burning eyes that hurt daily-I have now taken NDT for 5 days and the burning and pain I had for a year has vanished. It is yet too early to tell if that is the T3 added but I am hopeful. My FT3 was always in the lower range.
Hello,
Does anyone have any information about ESS and Crohn’s Disease/Inflamm. Bowel Diseases?
I have Crohn’s and my 15 year old son is being monitored for it but has other chronic gut absorption issues. We recently found out via bloodwork that it appear he has ESS going on as well.
Any help or info you have is greatly appreciated!
Thank you!!!
Well, nevermind. For some reason the correct link won’t come across. You can search Youtube for:
MTHFR and Thyroid Disorders (Dr. Ben Lynch).
It came thru for me…thanks for linking it. 🙂
Hmmmm………wrong video. Here’s the correct one:
Really interesting lecture regarding the relationship between methylation and thyroid hormones. Even if you don’t have methylation issues, low or high thyroid hormones (T4, specifically) can cause methylation issues as the methylation process requires homeostasis within the thyroid hormones.
I have been trying to find out what’s wrong with me. I wod love to know what tests I should request be performed. I have tried to be proactive in finding out what is causing all my issues but as you know they health issues can be so complex. I have had constant fatigue and weight gain although I eat. Low carb and sugar diet. I stay away from gluten. I developed a growth under my elbow similar to a rheumatoid arthritis nodule but I’m still waiting to have it diagnosed. It hurt so bad because it was causing what felt like displacement of the other bones to make room for the growth. I couldn’t move my arm for 6 months and could barely even hold a glass to drink with that arm. My hair has been falling out and has started to become pretty thin. I also suffer from hormonal acne and ovarian cysts, as well as chronic migraines that can last a month. I had my first migraine when I was 2 where I was given an MRI and spinal tap. Last year I developed chronic diareaha for 4 months and then it settled down after a cyclosporine food infection. When I get sick it is like my immune system is not working or maybe it’s safe to say it’s over reacting. I am sick for a month or more for colds my husband has for only a week. I have recently been tested with low DHEA, Low cortisal, normal TSH and Free T4 and reverse T3, but LOW FREE T3 and low feritan and low (MCH) mean corpuscle hemoglobin. I’m starting to wonder after reading this article if I might be suffering from an autoimmune disease. Any suggestions on labs my doctor should run. Feel free to email. [email protected]
Hi Kimberly, and welcome.
First of all, I am sorry that you are feeling so unwell. As well, I am no stranger to having “mystery” things going wrong with very little answers. Although I do not know all the definitive tests you should consider, I am aware of some and am happy to share what I know.
Low T3 when all other thyroid tests are normal, in my view, tends to suggest that the body is down-regulating itself for some reason, often illness. Constant fatigue also suggests some kind of low-grade illness.
One question I have, is have you had any viral-oriented vaccines as an adult? If so, sometimes they cause a low grade viral infection…and used to be thought of as a cause of Chronic Fatigue Syndrome.
Many things can contribute to weight gain and retention, as I have come to find out. Low Epinephrine (as shown by Pharamsan’s test); Low Taurine (same test). And I know there are other things that cause hair loss, other than thyroid, but unfortunately cannot remember them, sorry.
To test for immune activity, at least for what kind you are having:
* CBC w/ Differential (this will count your white blood cells and see which are more active).
Another test you might think of is a:
* Blood Smear (I am not exactly sure what they are supposed to test, but mine came back with viral activity)
As well, I recommend:
* Epstein Barr Virus (EBV) exposure test (often results in low grade viral activity)
To test for the possibility of autoimmune, I suggest these:
* ANA/FANA (this tests for antibodies to the nucleus of your cells), if positive then you can get further testing.
* RA Factor (this tests to see if you have rheumatoid arthritis).
* C-Reactive Protein or CRP & SED Rate (these two test for inflammation which is common to autoimmune).
I do not know all the immune tests, but two places to start are:
* C3a & C4a (C3a is a lupus marker…C4a is a Lyme or mold marker).
Acne may be zinc, so I recommend a:
* Zinc test
Basic Panel Tests you may find worthwhile:
* Urine Amino Acid or UAA test
* Organic Acid Test or OAT
* Pharmasan’s Neurotransmitter Test w/ all the extras
(these will give you a very good understanding of what is off in your body, imo)
Tests you’d have to pay for, but may be helpful:
* 23andMe.com’s Genetic Test $99 (this has been, along with the basic panels, the BEST revealer of mystery issues I have found ever).
* Igenex Lyme Test under $300 (the other screening test has only a 35% of picking up confirmed cases)
* Comprehensive Stool Sample $500 (one that shows you what you are digesting, enzyme, parasites, fungus, viral, bacterial, etc.)
* Comprehensive Nutrient Testing
* Comprehensive Nutrients You Make Testing
Hope that helps. 🙂
PS…the website that will give you an idea of what the panels and genetic test reveal in how one is making and unmaking nutrients is here: http://www.heartfixer.com/AMRI-Nutrigenomics.htm
PSS: was also thinking, have you been tested for C.Diff?
Chris Kresser has some really good articles (ebooks) on his website that many here might find interesting. You’ll have to register, but it’s free.
http://my.chriskresser.com/wp-content/uploads/membership-files/ebooks/Thyroid%20Disorders.pdf
Also, if you search on Youtube for Loren Cordain and a video names “Hyperinsulinemia”, some people may find answers to their health issues in these two sources.
Dr. Kesser also has a lot of good videos on YouTube.
Karen