Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dysfunctional thyroid versus dysfunctional metabolism (or both?)

Discussion in 'General ME/CFS Discussion' started by mermaid, Nov 2, 2017.

  1. mermaid

    mermaid Senior Member

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    As I have a diagnosis of both autoimmune underactive thyroid plus also ME/CFS can anyone explain to me whether the dysfunctional thyroid impacts on the metabolism of energy OR does the dysfunctional metabolism impact on the thyroid function? (I have had mitochondrial tests done which indicate problems with metabolism via the Acumen Lab in the Uk - I know these are not accepted mainstream but assuming that there is some truth in the results........) Or is it both of them in a vicious circle? Or is it as I suspect, a lot more complicated that either of these!

    Just trying to get my head round this as the NHS (health service in the UK) have insisted that I had speeded up my metabolism too much by being on T3 only (Liothyronine) with suppressed TSH and contributed to my osteoporosis, and so they believe that now I am on T4/T3 and the FT4/FT3 levels are falling that I am now at the correct metabolic rate, even though of course I don't feel I am! The nurse just tells me that I am used to being at that higher rate so I am not used to it - hard to believe this really as I am now struggling for energy again.
     
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  2. Learner1

    Learner1 Professional Patient

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    Thyroid hormone has a profound effect on mitochondria. And having unhappy mitochondria won't help your endocrine system work better. You might look here:

    https://www.ncbi.nlm.nih.gov/pubmed/27783852

    Having Hashimotos and ME/CFS is fairly common. My ME/CFS doctor specifically looked for multiple types of autoimmunity in me. Jarred Younger has found a subset of patients with autoimmunity. And having one autoimmune issue makes you more likely to have others.
    The NHS seems to be anti-T3 because the one T3 manufacturer they do business with charges astronomical sums for something that's a cheap medicine in the rest of Europe and the US. Its a political issue and has nothing to do with the health of patients.

    A few things to think about, as I'm going through a similar issue myself.
    1. Many of us have a "sick thyroid" which doesn't behave as most endocrinologists expect. We may not convert T4 to T3 properly, and thyroid hormone may measure differently on a blood test than its actually distributed in your tissues.
    2. TSH does help bones. Not having any can be detrimental. However, if we go on all T4, our rT3 may rise, while T3 will not be made. You could try moving to T4/T3 combo, and increasing T4 to see if you can get TSH to rise. (I'm trying this under doctor supervision and haven't succeeded yet...
    3. You'll want to have TRH checked, which could identify a problem in your pituitary or hypothalamus. Both my primary doc and my ME/CFS doc think my pituitary is the problem. You can also measure ADH, LH, FSH and other pituitary hormones.
    4. There are many other variables. You can increase bone nutrient intake. Estrogen is also helpful. So is weight bearing exercise.
    5. You may have MCAS, mast cell activation syndrome, which many of us have, and has been linked to osteoporosis, especially if you have allergens. You can check tryptase, histamine, Chromagranin A, snd prostaglandin D2.
    Its not just about T3.
     
  3. Wishful

    Wishful Senior Member

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    There's very little discussion about the effects of T2, but it's definitely involved with my ME/CFS. Supplemental T4 and T3 doesn't help me, but T2 does, as does iodine, which the thyroid gland converts part of into T2. Also, my experience with an endocrinologist is that they want easy answers even though patients might have very complex thyroid issues. If you think your endocrinologist isn't listening to you, find another.
     
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  4. echobravo

    echobravo Keep searching, the answer is out there

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    @mermaid the regulation of hormones affecting energy production and stress handling seems to be a complex system that no one fully understands. I found this article from the WAP foundation useful as an intro to the factors involved

    https://www.westonaprice.org/health-topics/modern-diseases/low-metabolic-energy-therapies

    I suspect that in my case the hypothyroidism that I developed almost 15 years ago was just one of several ways that my organism was being metabolically downregulated. It is interesting that the adrenals can orchestrate such regulation by increasing the rT3 to T3 ratio, hence directly affecting ATP production negatively.

    Looking for a good endocrinologist that understands the complexities and what can be done for ME wrt “balancing” thyroid and adrenal hormones.
     
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  5. mermaid

    mermaid Senior Member

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    Hello @Learner1 and thank you so much for your comprehensive reply!

    Thank you for that study you posted - very interesting. So it's a kind of circular thing then really - with poor thyroid function affecting the mitochondria which in turn as you say then means it become self perpetuating re the endocrine system as they cannot make it function well. Oh dear me.

    Yes, as you say, once you have one autoimmune condition you tend to get more. Not that anyone here in the UK told me that my thyroid condition was autoimmune. It took a doctor who specialised in oral medicine to tell me that when I got Lichen Planus. I also had an autoimmune condition in pregnancy although that was many years before I got diagnosed with Hashimoto's (not that the medical profession here ever called it that...).

    Yes, I agree that there is a lot of politics at the moment involved in the whole T3 situation, although I am pretty sure that even so most Endos would have been against me taking T3 only - I just happened to find one who was OK with me being on it 5 years ago, although he probably would have expected my GP to raise concerns over my suppressed TSH.

    Re your helpful points....
    1. Yes, I agree, and even sent a study to the Endo about this by Kent Holtorf. Needless to say, they are not listening. I suspect that even if I don't have the D102 gene issue (it's possible that I don't as I was OK on T4 only to begin with before I changed to T3 - was actually on it for 17 years but ill for about 13 years of that), I believe that if you have mitochondrial problems then your conversion rate will be not good or if you are ill (I have chronic immune problems).
    2. Funnily enough that is exactly what I am doing also - going onto T4/T3 under supervision. I am only allowed 20mcg T3 as far as I can tell along with 75 T4. I have been told by my Endo that it can take up to a year for the TSH to rise so we will see.... I suspect that I could actually do with a little more T3 than 20 so may sneak in another 5mcg without actually telling them ultimately.
    3. I have just been given a blood test for my pituitary which I have been told was OK. Not sure if it was the one you mentioned here
    4. I am now taking a whole range of supplements to help with my bones. I am also taking natural progesterone, but don't feel I want to take oestrogen as I am 65 and 15 years past menopause, although I am taking a couple of things to raise it naturally as much as possible (boron and a herb from my herbalist). Weight bearing is OK but I wish I could do more - changing my thyroid meds has reduced my energy unfortunately and along with having ME it's not great, but I am doing what I can.
    5. I didn't know that MCAS is linked with osteoporosis. I did look into MCAS last year as I was definitely having some problems with histamine then. Since then I have reduced my risk by reducing foods with histamine and I don't think I have a major issue now.
     
  6. mermaid

    mermaid Senior Member

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    I don't know if you are in the US @Wishful ? Over here in the UK you cannot just go looking for another endocrinologist if you don't like the one you have - besides most of them are the same as they are all working in the same way here under the NHS (our health system which is free at the point of use). Even the private ones are no better......
     
  7. mermaid

    mermaid Senior Member

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    Hello @echobravo thank you for your post. I will need to read through the whole of that link tomorrow as it's quite detailed. I have tried some of the things in there, and actually had improved matters somewhat in using natural progesterone since the beginning of this year as I knew I had chronically low cortisol from saliva tests done over 4 years, (but not severely low). The progesterone has helped somewhat and has improved my migraines.

    I have been hypothyroid over 20 years, and as I entered the menopause everything went haywire, in the endocrine arena, but I did not have enough knowledge then to know what to do about it. Since then I have tried many approaches re diet, herbs, adrenal support, additional supplements to support the mitochondria, etc. I am somewhat improved as a result, but changing my thyroid medication recently I think has disrupted things. It may settle down given a bit more time, but it's hard to tell at the moment, and I miss the energy I had with the amount of T3 I was on.

    I feel very much on my own with this now, to be honest, as however helpful thyroid forums are, it's not quite the same as decent medical support. That is really not to be had easily in the UK with any chronic illness as far as I have seen. I hope you have better success at finding someone to support you.
     
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  8. Learner1

    Learner1 Professional Patient

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    You're welcome. Sorry youvechsd so much trouble getting info from your doctors. Not helpful...
    This is what my naturopathic and ME/CFS doctors say. When I saw an endocrinologist to see if he had ideas on my bone loss recently, and he was boggled by the amount of thyroid hormones I took, I shared some articles about "sick thyroid syndrome" and he backed off a bit. People with serious chronic illness have pituitary and thyroid glands that don't behave properly:

    https://academic.oup.com/jcem/article/84/1/151/2866194/Dangerous-Dogmas-in-Medicine-The-Nonthyroidal

    http://www.mdedge.com/ccjm/article/95238/endocrinology/approach-low-tsh-level-patience-virtue

    https://www.karger.com/Article/Abstract/104468

    https://emedicine.medscape.com/article/118651-overview#a5

    I felt fine on 75mcg T3 + 75mcg. I've gone to 125mcg T4 + 62.5 T3.

    FT3 and FT4 are sitting at the low edge of normal, rT3 is normal, and TSH is still .006.

    The endocrinologist decided my T4 dose equivalent is around 350mcg (his math, not mine), which is enormous, but even he is seeing I need a big dose to function.

    We can't be measured up against healthy patients. It just doesn't work. The studies that support our dosing should be measured with sick patients.
    Well, there are several hormones made in the pituitary. You may be making all, or some, or some of all of them. Some 20% of people have pituitary adenomas, most are undiagnosed.

    It might warrant further investigation. Or the doctor could assume its a bit sluggish and compensate, I suppose. Or ignore it, of course...
    Calcium, magnesium, vitamin D, boron, strontium, and vanadium may all play a role. I'd like to see a more detailed overview of all if this chemistry, as its definitely more complex than the doctors typically believe. Here, they want to pull out a prescription pad for Fosamax, Boniva, Prolia, etc. but there are down sides to these interventions...
    You might be surprised. I've had low histamine consistently, but was recently diagnosed with MCAS. Worth looking into to see if it fits you. Many are undiagnosed for years...
     
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  9. ahmo

    ahmo Senior Member

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    @mermaid I wish I could contribute something intelligent here. Just wanted to say I'm also on T3 only, for about 7 or 8 years now. Before that, since adolescence i was on synthyroid. After ME, I spent some years trying different thyroid combinations, including natural thyroid, and T3/4 combos. Nothing but T3 only worked for me. My GP was able to accept my TSH readings w/o pushing for me to change formulations.

    I also have histamine and MCAS issues, which are generally under control these days. I take strontium and K2, as well as D, for my bones, though not daily (I use self-testing for dosing). Also bone broth. And I'm taking adrenal, hypothalamus, and pituitary glandulars, which seem to be the safest way for me to compensate for my body's deficits, rather than other types of supplementation or meds.

    Good luck to you.
     
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  10. mermaid

    mermaid Senior Member

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    Thank you @ahmo for writing. Very interesting to hear that you are T3 only as not many are, and certainly not many in the UK I think, as there is no encouragement at all in that direction in mainstream medicine. There are a couple of books written on the subject by a well informed patient, Paul Robinson, from the UK, as he was driven to research his own failing health and found that T3 only was the only thing that saved it (plus another technique that he developed for helping his adrenals to recover).

    It sounds as if you have been on a long route to try to find out what works best for you. How old are you now? Are you female? I only ask that because I wondered if you are post menopause re the bones issues. What kind of self testing do you do for the bones? Is that muscle testing? I too take K2 and D3, and some other things like boron, and a bit of strontium but am still unsure on that. I recently had a bad fall downstairs and landed heavily on my back and was amazed not to fracture, despite the osteoporosis so my bone quality must be pretty good at least.

    I too thought I was having some problems with histamine and MCAS last year, so I cut back on some of the things that could have been worsening it and mine too is now fine. I think it was very mild compared with others although I had/have chronic gut problems, but that too is under much better control now.

    As for the thyroid, well I am trying to review how I feel about the T4/T3 mix, which I have been on since July, and I think I will probably be able to stay on this, but ultimately will have to ignore the advice of the Endocrinologist to find my own levels of the balance of each of them to find reasonable health with this. They would like me on 75T4 and 20T3, but as the levels of T4 went up, my health went down.

    I am also experimenting with types of T3. Not that I can afford to mess around much with them, but I have a source for now abroad which is easy and cheap to obtain. I have been told by many that the NHS T3 is not very strong or good quality despite the enormous cost of it, and the other one I am trying so far seems better, but I need to give each a fair trial to compare and I am only on day 2 of the comparison. If this is true then no wonder my health has declined. It could be as much to do with the quality of the T3 than the issue of the T4.
     
  11. Learner1

    Learner1 Professional Patient

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    Has anyone looked into calcitonin to reduce bone loss? It was mentioned in a paper by Afrin on pharmaceutical interventions for MCAS. It seems like a better choice than Fosamax, etc. but I'm wondering how effective or long lasting a solution it is.
     

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