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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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    Sorry I don't think I know more than you do @Learner1 re that model. Are you past menopause yourself?

    Incidentally in your first post on here you mention that TSH (suppressed I guess you mean) is detrimental to bones. Not everyone agrees with this and certainly not patient groups. There is research both ways it seems. Not enough research re T3 as not very much studied but there is some re T3 usage both with T4 and without (the 20 year study in Scotland). Although it doesn't quote TSH levels, I am guessing that those on T3 only would definitely have suppressed TSH and yet no evidence of more fractures.

    Like you, I have read accounts of women regaining bone, but we never know all the variables of why they lost that bone. it can be due to so many things.

    I take most of the supplements that you do (not vanadium I think and am dipping my toe in slowly re strontium). I also take collagen as I believe I have a problem there and it has made a difference to my creaking in my knees so maybe it's doing good somewhere else. Someone keeps posting on an osteoporosis forum about muscle testing (someone in Canada) but it all sounds a bit whacky to my way of thinking. My own experience of a muscle tester didn't make me feel I wanted to pursue it more. http://www.muscletesting.com/osteoporosis/

    I certainly have problems re exercising and things have got worse with my recent redetached retina operation on top plus immune issues so I feel ill most of the winter. I do what I can and try and get out in the garden in the summer. I sometimes wonder if the whole weight bearing thing is overdone re what some people think is necessary. I looked on Dr Myhill's page and she seems to think that quite a small amount is needed each week for regenerating bone 'Take regular Exercise, 12 minutes a week is enough, to stimulate formation of bone and improve endogenous growth hormone production.'
    I certainly take more exercise than that! Some people on forums go on about the miles they are walking, and I wonder if it really makes any difference.

    I bought a rebounder just before my first detached retina, which was intended to help with fitness and possibly bones, but then I found out that you should not be bouncing with a detached retina so I became very cautious and never really got going on it, and once it got repaired there were other problems, like it redetaching! . Plus some people say it doesn't help anyway. I don't really have enough energy for it right now....
     
  2. Learner1

    Learner1 Forum Support Assistant

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    The info I've seen says TSH itself helps bones.

    I've been on T3 for 5 years, as I don't convert T4 well. Lately, we've been trying to raise my T4 dose while lowering T3 to see if I could still function while trying to stimulate TSH, but its still stubbornly close to zero.

    The standard treatment for uterine cancer is a total hysterectomy, resulting in menopause, so without ovaries, I don't make any estrogen, hence the estriol dosing.

    I find biochemistry to be far more useful than muscle testing, though I know people who swear by it. I think this is a very complex biochemistry problem that has to do with how the body uses calcium, a very complex topic.

    As for exercise, I find that lifting weights is tolerable - I can control the effort and take naps if needed. The rebounder would set of my POTS, but if you can do it, it sounds like a good idea.
     
  3. mermaid

    mermaid Senior Member

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    Oh right I didn't know that (re the first point of having Hashimoto's and euthyroid sick thyroid. Certainly I have something which means that T4 does not work well for me. I have measurable problems like low immunglobulins and low platelets so something in my body is not doing well.

    I have had a recent test for the pituitary done at the hospital and was told it was 'nornal'. I do like to get hold of test results usually so not sure if these have been sent to my GP or not but will check at some point to get copies.

    I did have my DHEA checked out 3 times in 4 years a couple of years back and DHEA was normal even though cortisol was not. I think it must have been the herbal support I was on maybe.
     
  4. bertiedog

    bertiedog Senior Member

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    I am 69 and have never stopped using just one squirt of Estrogel daily but I also have Hashimotos and adrenal insufficiency so I take around 1 3/4 grains dessicated thyroid since 2002 plus 25 thyroxine and between 5mg - 6mg Prednisolone. However when I had a Dexa scan 5 years back they said I had the bones of a young woman which surprised my doctor and the radiographer. I was adamant I didn't want to stop the bio-identical oestrogen because my Mum developed quite a curved spine when she was around 70 and I didn't want that to happen to me.

    I don't take progesterone at all despite having a womb because I naturally have a good level of progesterone as I have messed up steroidal pathways. Whenever I have added progesterone within around 4 days I could kill my partner so it obviously wasn't suiting me along with killer migraines. Naturally my GP wasn't happy about me having Estrogel at my age so she insisted I had an ultrasound to see how thick the endometrium was and it turned out mine was no thicker than somebody who was not on HRT so she is now fine about it.

    I am sure there is lots of research on how oestrogen helps with strong bones.

    Actually I don't intend ever coming off it as I believe it is the reason for my strong bones and straight back! Lots of other things wrong like osteoarthritis and ME stuff but I do remain quite active and can still touch the floor without bending my knees! I have also for the past 17 years taken good quality supplements to help my bones etc.

    Pam
     
  5. mermaid

    mermaid Senior Member

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    Apologies @Pam - just cannot work out how to do multiquote thing despite being told.....

    I remember you Pam from some years back. How fantastic to find out that your bones are doing so well!! My osteoporosis diagnosis was a complete shock as I thought I was doing all the right things - apart from taking oestrogen it has to be said. So you took it post menopause presumably? I felt so worried about the links with breast cancer that I didn't want to chance it. It is interesting that my Endocrinologist was happy and encouraging me to take it even at my age. I am due to see a rheumatologist in a few weeks but I am guessing that he will encourage me to take bisphosphonates which I don't want to.

    How did you get your bioidentical oestrogen? I did try to get my head round it a while back and read up about it, but there is not much out there though I found one place where you could do it by post pretty much.

    In my case I clearly needed progesterone badly as I only began using it a year ago, and it has really helped with my previously insoluble migraine issues. i still get them but not so badly.

    What is Prednisolone used for? Is that a steroid? Does that undermine bones usually?

    Great that your Dr sent you off for an ultrasound and that your endometrium was normal!!

    It does sound as if you have been taking useful supplements longer than I have. I have been taking some for 10 years or so, but only added in Vit K2 and Boron last year. I think my bone quality is good if not the density as I fell downstairs last year and thumped my back and didn't fracture.

    I too was pretty active while on T3 only - the NHS has done its best to wreck my thyroid regime and my health has gone steadily downhill ever since. I did try NDT but felt terrible on it, but T3 only worked for me. I am now on 25mcg T4 though, plus have taken myself back to 50 T3. Risky but the only way I can get back to good health I feel (although the Endo promised great things on oestrogen!). I just find it bizarre that she was quite happy for me to be on oestrogen which holds a risk but not on T3. Both surely hold risks and you have to choose your risk.
     
    Last edited: Jan 9, 2018
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  6. bertiedog

    bertiedog Senior Member

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    @mermaid I learned about the harm that NHS could do to thyroid patients years ago and didn't go down that route. I was fortunate in that I found a private Endo who I used to see at a health shop. He was very friendly with the knowledgeable guy who owned it so as a favour visited once a month and only charged around £50 to see him whereas his normal fee in London was around three times that figure. That was in 2002 btw and I couldn't have afforded to see him in London in those days. So all in all I was very fortunate.

    He used blood tests for the thyroid but also took notice of my history and symptoms and turned out I had high Anti-Thyroidgnobulin antibodies but TPO ones were normal then but now they have swopped round and my TPO are very slightly raised and the other TgB ones are normal since treatment. He also diagnosed me with cortisol insufficiency. I had very high DHEA at all 4 points of the day and night on the 24 hour cortisol saliva test he asked me to do and he said the pituitary was asking for more cortisol but adrenals cousin't produce this so instead threw out huge quantities of DHEA. He was right cos when retested and on hydrocortisone the DHEA came back into range except at night and this is when I was still getting symptoms like panic attacks which would wake me.

    He said I would do better with Prednisolone because it was longer acting and he was right. Once on 5mg we retested after 6 months and DHEA was fine all the time and has remained that way plus the nasty symptoms disappeared. Unfortunately the NHS doesn't practise medicine in that way and would never have treated me because I wasn't at Addisons levels but I still couldn't function. When I saw an NHS Endo just once he told me I didn't need any thyroid medication whereas in fact I needed a full replacement dose.

    I lost the 2 stones I had put on over the previous 6 years whilst on the steroid and thyroid meds and have remained slim at only 9 1/2 stones whereas I had gone up to 11 1/2 stone before treatment with terrible symptoms like very low bp,complete blackness would come over me, extreme dizziness/vertigo and migraine. Plus of course no energy to do anything. How shocking to think the NHS would have left me like that. Once on treatment I felt I got my life back.

    My blood test results were confusing in that my TSH was quite low at 2 but my T4 was at the bottom of the range and this private guy really knew his stuff and said that was abnormal. That was before we knew I had antibodies. At that time I was mercury poisoned so that could have messed up my HPA axis because these days my TSH does respond if my thyroid meds are changed.

    Last year most stupidly I asked to see an Endo just to check me out as I am getting on to be 70 in 2 months. Well this Endo did the usual NHS checks making a note of my height and weight and told me I didn't need the 25 mcg thyroxine as well as the 2 grains I tool because I was on too much medication despite all my blood test results being in range apart from the TSH which is always suppressed with me cos of the T3. It was a disaster and I missed that tiny bit of thyroxine from the 2nd day of not having it.

    Within a month I had developed many of my old symptoms of panic attacks and almost complete loss of energy out on my walks with my dog which would stop me in my tracks whilst I tried to get my heart under control. Later on my immune system went and I was non stop unwell. It was a nightmare, I lost all the gains I had made and that was with just 25 thyroxine being withdrawn. I had stayed on the 2 grains I was taking but for me it isn't optimal, I need a bit more T4. Luckily the blood tests the Endo ordered after 7 weeks off the thyroxine reflected how I felt and T4 dropped from 14 to something like 6.5 and that was how I felt.

    Believe it or not when the Endo did a follow up telephone consultation he told me all the symptoms I had couldn't have possibly been from stopping the thyroxine but I had changed nothing else. He was wrong of course but it took me about 3 months to get to where I was before he messed me up. Never again will I go to an NHS Endo and my GP has agreed he will look after me because he keeps a check on me and knows that I am clued up to what is going on plus he will do blood tests for me.

    My GP gives me the Estrogel which is made in France I believe and always has so I have been lucky there. I started it aged 50 when in perimenopause because they found I didn't absorb tablets properly. I followed the advice then of Laririan Gillespie who was a hormone consultant in the US and she used to quote studies and said they had got it wrong about oestrogen and breast cancer and it turned out progestogens were the cause of the extra cancers found in women on HRT and not bio-identical oestrogen.

    Sorry for the long post but it has all come back to me!

    Good luck with sorting out your hormone/bone issues I know how complex they can be and reminds me to be grateful for the help that I do get with this from my GP.

    Pam
     
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  7. pattismith

    pattismith Senior Member

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    Hashimoto is an auto-immune thyroiditis. it can be associated to hypothyroidism or not.

    In my case, I do have TPO auto-antibodies, so I have Hashimoto, but my thyroid function tests are always in the normal range.

    In fact they are not so good nowas I just received the last one and my fT3 is low.

    Hypothyroidism is diagnosed when fT3 and fT4 are low, with high TSH.

    But in my case, TSH is normal/low, so I don't have hypothyroidism, but I have what is called Euthryroid Sick Syndrome.

    In this syndrome, fT3 is low most of the time, but you can also have low fT4 and low TSH.

    it is assumed that your thyroid is normal, but it's regulation is failing du to another disease;

    It seems that inflammatory bowel disease could be a cause, so it could explain why it could be widespread in ME/CFS.

    There is no consensus on the symptoms and the treatment of this syndrome...
     
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  8. mermaid

    mermaid Senior Member

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    Hello @bertiedog
    Thank you for sharing your story. You were indeed fortunate to have found that Endo at that time. I don't think all private Endos are as good sadly. I have an online friend who didn't get much help for her problems from private ones.

    But as you say, the NHS ones don't have a clue and wreak havoc as I found to my own cost although I know she thought she was doing the right thing, having been convinced that it was the T3 that caused the osteoporosis. The bit that annoyed me was that she then fobbed me off onto her nurse didn't care a damn how I was feeling as I was weaned off the T3, and explained my worsening immune system by 'there's a lot of colds about' when this was in July/Aug and it was clear from my Immunoglobulins that things had got worse.

    It is interesting that your individual system was so finely tuned that just 25 mcg T4 (or loss of) could upset the apple cart so badly.

    I wish I could find someone who was interested enough to fine tune my own system instead of having to battle it out on my own with very little knowledge. I always thought that I coped well on T4 in the early stages of being put on it (20+ years ago) but when i got to see all of my medical notes and took down my TFTs I found that my TSH was actually stubbornly raised for
    several years even after being put on 100mcg T4. I would never have even seen an Endo except at my own request having tested my FT3 and found it low.

    It also sounds as if you have a helpful GP. Mine has always been kind but admitted to me several times that she knows nothing about the thyroid.

    Re the Estrogel.... yes, I know that thinking on the subject of cancer has changed somewhat over the years. Still not sure I want to take the risk without some decent advice and my GP sounded surprised that the Endo thought it was OK at my age. I did read that the natural progesterone on its own is probably not helping with the bone issues but thankfully it is helping with the migraines.
     
    Last edited: Jan 10, 2018
  9. bertiedog

    bertiedog Senior Member

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  10. mermaid

    mermaid Senior Member

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    Thank you @bertiedog
    The reason I am on T3 at all is due to Thyroid Patient Advocacy and Thyroid UK. I did use both sources to help me in the early days when I was seeking help around 5 or 6 years ago (it never occurred to me until then that my problems might be thyroid related as I was taking the thyroxine and assumed all was fine).

    I now get a lot of help via TPA and have made some progress but it does feel like 2 steps forward and one back at the moment.

    I did try dessiccated thyroid about a year ago for a short time, but felt so dreadful on it that I came off and went back to T3. The person who was helping me agreed this was my best route and she was a real fan of NDT.
     
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  11. Victronix

    Victronix Senior Member

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    Regarding the Estrogel/cancer risk, my impression from the latest research I've seen describes the risk as being mainly about timing -- if you are 5 years out from starting official menopause with no periods at all, then there is a significant risk. But if you started taking estrogen before menopause or within 5 years of starting it, there is much less risk. It's sad how backward the views are from doctors on estrogen, so if you spend some time looking at the research you see two camps - those stuck in the decades old beliefs, and those who are plowing ahead with it and finding really interesting stuff without the extreme fear mongering about cancer.

    I take Divigel, a bioidentical. I have Hashimoto's and a B-12 deficiency and basically crashed at one point after a doctor tried to change my Synthroid dosage to alternating dosages every other day -- that put me in the ER and took me 2 years to recover from, and during that time of clawing my way back, I discovered everything else. So I started the estrogen because when mine started to decrease, around 50, it got so bad so quickly that I literally could not walk up a slight incline, and could not climb stairs - became non-functional.

    Today I'm mostly working on gut issues, trying to get to the root of it all, gluten-free, low carb, etc. -- a huge help for my energy. I am working through the protocol in The End of Alzheimers (amazing break through stuff reversing Alzheimers for the first time ever - https://www.amazon.com/End-Alzheimers-Program-Prevent-Cognitive/dp/0735216207), since I have on AP0E4 gene.
     
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  12. Victronix

    Victronix Senior Member

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    Have you always had low platelets? This is how I came to this thread, because my sister has low platelets and extremely low energy and I am looking for answers. She lives in Canada, where the healthcare is also questionable - I only say that based on my sister's experience and another person I know who had a terrible situation with cancer where they misdiagnosed until she was stage 4, and now has a death sentence.

    In any case, my feeling is that to rule out the role of pharmaceuticals in things like low platelets, one has to get off of each of the drugs that list low platelets in their as possible side effects.

    But getting anyone to let go of their statins or their BP meds for even one month is almost impossible, and those can affect platelets. Again, backward MDs think that if you go off a statin (even if you never had a heart attack) that it's too risky to do and will instead endlessly "check" the low platelets month after month as they go lower and lower.

    Meanwhile a UCSF doctor (the best medical school in the US) states:

    [T]here is plenty of good evidence to recommend statins to patients who have had cardiovascular problems, but that there is "little to no benefit" in using statins to prevent a cardiac event in those who haven't had one before. https://www.cnn.com/2017/07/24/health/statins-side-effects-outcomes-study/index.html
    It's an unbelievably backwards situation we are all in with so many doctors . . . My sister also developed a rash to her own sweat, which took months to expose -- it was the anti-depressant she was put on! But by then she'd gained a lot of weight from doing no exercise at all, and could never lose that again.
     
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  13. Learner1

    Learner1 Forum Support Assistant

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    I am a stage 3 uterine cancer survivor and went into premature menopause with my hysterectomy.

    Excess estradiol definitely can promote cancer, bioidentical or not. It is wise to have a comprehensive test of hormones, like a DUTCH test, to check all hormone metabolites and to ensure you're not inadvertently promoting a tendency toward female cancers.

    Many of us need progesterone to balance estrogen. I've benefited also from taking tiny amounts of pregnenolone, DHEA, and testosterone, under a doctor's supervision. And, since I make no estrogen, I take estriol in cream form, the only estrogen which has not been shown to provoke my cancer, rather than estradiol which has.

    So sorry about your friend's cancer. Being vigilent and persistent is important.

    I recently had a serious reaction to a calcium channel blocker which dropped my platelets from 300 to 100, hematocrit from 40 to 27, and hemoglobin from 12 to 9 in 2 weeks. I was extremely fatigued at the same time and got off the drug, and my labs normalized.

    Lead toxicity can lower platelets, too. And there are many other reasons.
     
  14. mermaid

    mermaid Senior Member

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    @Victronix as far as I know my problem with platelets only began in pregnancy, over 30 years ago now. There is a well-known issue with this in pregnancy where it usually then rights itself as mine did. Mine was certainly seen as autoimmune at the time as far as I can tell from my medical notes then.

    It may be that there is no connection with my low platelets now, but I am inclined to think that it almost certainly is. However it's not of the same magnitude now, as my platelets fell by a lot in pregnancy, and by much less this time thankfully so not at the level that I would be referred. So mine are below range, but only by maybe 20 points. I think the level in range is around 150 and mine can be around 130 sometimes, but then may go up again. My GP says they don't refer until way below that - rather too low I thought - I would have thought if they drop below 100 then there should be referral. Maybe your sister is in this kind of level, but I do know that low platelets can = tiredness.

    In my own case I can be pretty sure that it's not induced by any pharmaceuticals as I was not taking any in pregnancy, and even now I only take thyroid hormones. I think it's unlikely that it would be a side effect of them. I prefer not to take medications if I can find an alternative, but there is no alternative if you have been hypothyroid for over 20 years. I do use herbal medicine but I go to a registered medical herbalist who uses organic herbs and knows her stuff.
     
    Last edited: Mar 4, 2018
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