The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Thyroid Function...Labs May Lie

Discussion in 'Thyroid Dysfunction' started by xks201, Jul 1, 2012.

  1. xks201

    xks201 Senior Member

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    I always had "normal" thyroid labs. T4/T3/TSH were always in range. I always had cold hands and feet and hypothyroid symptoms.

    I have been reading articles and interviews from a doctor from Canada who is no longer in practice. He mentions that before committees on health got together in the 70s (I think) that CFS and Fibromyalgia were nonexistent terms. The epidemic simply did not exist, because it was recognized as a hypothyroid condition. TSH blood tests were not used. And according to him and to me they are completely useless.

    It wasn't until 4 months ago that my thyroid started showing Low T4 and T3, and TSH. I have suffered these fatigue symptoms for practically 7 years (not to the same extent the entire time).

    Due to the hypothyroidism I think my entire endocrine system started failing. Hypothyroidism caused low testosterone without a doubt.

    This doctor claims that the longer a patient has chronic fatigue, the longer it takes to restore the patient. He uses 5+ grains of armor thyroid a day in CFS/Fibros which is equivalent to like 200mcg+ of T4. Personally since taking 200mcg of T4 I have noticed huge improvement in energy.

    When you have comorbid cortisol deficiency like me it is tricky though because low cortisol will allow thyroid hormone to hang around in the blood longer. I had to increase my cortisol dose because I was getting hyperthyroid symptoms at 100mcg of T4. I now take 200mcg T4 a day without a problem.

    I have long suspected that TSH is completely useless, and it is. Hell, even thyroid labs are completely useless IMO. These are my opinions and if someone replies that I am insane for listing ten possible treatments of chronic fatigue over ten posts screw off because I am not going to reply. I do help this information helps some of you.

    I also think T4 plays more of a role in the body than doctors think. When I use T3 it lasts like 2 hours in me. That is the opinion of many doctors too. It is arguable whether timed release T3 even absorbs properly down the intestinal tract. I choose high dose T4.

    The problem is that the brain can need more thyroid and it has no way of demanding more direct thyroid hormone ... the thyroid will proceed at its normal level of production, which in some people is next to nothing. I will find this doctor's name. He apparently had a huge success rate - and he mentions pre 1950 doctors treating this condition with high dose dessicated thyroid hormones.

    I think the reason that it takes people who have been ill longer longer to respond is that the whole hormone system and possibly nervous system is impacted. I think beta agonists might benefit a CFS patient in addition to high dose thyroid hormone because lack of thyroid causes down regulation of beta adrenergic receptor production. I don't have a citation for this at the moment and I don't feel like looking for it.

    In summary, it is quite possible that the committees that decided TSH to be king effectively ruined thyroid replacement therapy for everyone by underdosing them by one third.

    If you respond extremely to hormones please give it some time. The receptors are upregulated so it takes time for them to normalize. I don't think this means less hormone should be taken in all cases. Thyroid hormone seems like more is better. Taking only high dose T3 I might not recommend.

    I write these posts because I genuinely empathize with other people who have spent tens of thousands of dollars (or years) fighting what should be completely curable by a physician who has read medical literature pre 1950. It is amazing how one idea like the TSH test can completely ruin medicine.

    My goal of this post was to inform you all that my thyroid symptoms showed up long before lab tests did, and that I only respond to high dose T4 (200mcg). Anything less does nothing for my CFS.

    You all are free to comment but I'm not about to argue if that is the intention of any of you.

    If you think you may be cortisol deficient, an ACTH stim test is needed to verify this. An AM cortisol test says absolutely nothing. I have seen people have very high PM readings of cortisol and low levels of AM cortisol. If you have low cortisol and go on thyroid hormone, you probably will feel worse.
     
  2. Navid

    Navid Senior Member

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    I am interested in the dr's name and learning more abt this treatment.

    tx
     
  3. xks201

    xks201 Senior Member

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  4. xks201

    xks201 Senior Member

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    I also recommend all of you to use iodized salt. Iodine after all makes up the T3 and T4 molecules.
     
    Gondwanaland likes this.
  5. jeffrez

    jeffrez Senior Member

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    I understand what you're saying, especially about TSH, but sometimes the situation when actual ME/CFS exists seems a little more complicated. In fact, if there are abnormal thyroid labs, that would preclude a diagnosis of ME/CFS. I understand that yours were normal, but for some of us, we often have abnormal thyroid labs (high TSH, low T3 or T4, etc.), and yet still have ME/CFS predating the abnormal thyroid panels.

    As you said in the last line above, if someone has low cortisol and goes on thyroid, they often feel worse. So what would be your recommendation there? Take steroids?
     
    Misfit Toy likes this.
  6. jace

    jace Off the fence

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    If someone has low cortisol, it means the adrenals are in trouble. According to Dr. Peatfield, you must treat the adrenals first, with bovine adrenal gland extract and possibly support supplements. Once the adrenals are functioning better, then the NTH (armour, etc) will work. I'm currently sucking this theory, and I'll see.
     
    SickOfSickness likes this.
  7. xks201

    xks201 Senior Member

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    If you need cortisol you need cortisol. Yes take steroids if you need them. If you have low cortisol you can go into adrenal crisis. And adrenal crisis is a serious thing that probably needs more than bovine adrenal extract.

    Jeffrez, I had CFS predating abnormal thyroid panels. That was the point of the thread.
     
  8. justy

    justy Senior Member

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    Hi XKs, thanks for bringing this important subject up. Yes it has been discussed many times before among M.E patients - but still the whole thyroid issue never seems to be resolved. For me personally i had aT4 level that was gradually declining over time - from 17 (when i had already been ill for some years) to 14 a couple of years ago, yet because it was in the normal range this was considered fine - despite my showing all the symptoms of being hypothyroid. My TSH is always over 1, but a few years ago i saw it was about 3.5/4 - again in the UK considered normal. My TSH goes all over the place, like my T4. I had a private tests for thyroid antiboides and it came back normal.

    My M.E doctor decided based on symptoms to give me synthetic T4 (levothyroxine) i started at a tiny dose as i am so susceptible to drugs - tried 12.5mcg, then 25,mcg. I felt no different at all. My T4 gradually rose a tiny amount. My TSH went below 1. We upped the dose to 50mcg and i immediately started having strong hyperthyroid symptoms. My bloods showed i wasnt hyper.

    The M.E doc says she sees this in patients all the time - a need for thyroid hormone. but an inability to tolerate it. She suggested it is either adrenals or heavy metals. I cant afford more testing for all this. Had an ACTH stim test at the hospital and they still, 6 months later havent told me the results (they may have lost them)

    So i do nothing about it, because i dont know what to do. I spent some time hanging around on Thyroid boards and their experiences were very very similar to M.E patients - although not those in the very severe spectrum.

    I cant take steroids even if i wanted to as i have had bad problems with them in the past - they wiped out my immune system and i got very very sick (i had to take them for lung fibrosis) now i avoid them like the plague.
    I'm working on adrenals with my medical herbalist and hope this will help some.

    I strongly suspect that M.E is not hypothyroidism, but that it is a later, downstream affect of systems going haywire, hence why so many of us cant use the treatment. I also imagine that some with M.E are misdiagnosed and may have pure hypothyroidism. But nonetheless im sure its an important part of the jigsaw puzzle. If we were back in the days before lab tests we would be treated much more frequently based on symptoms an by consultation, rather than a cursory glance at a computer screen. I'm sure many more of us would see imporvements if that were the case.

    All the best, Justy.
     
  9. Enid

    Enid Senior Member

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    It's certainly a puzzle for me too. My ME onset was out of the blue vertigos, my Doc found and treated hypothyroidism with initial fairly high Levothyroxine, now levelled out at 100mcg. The only problem was it did not stop the progression into full blown ME with all the symptoms we know (cognitive decline the most rapid). I do suspect some infection though the limited blood tests under the UK NHS revealed nothing. My Neurologist considered MS, Parkinsons even Polio but no conclusions at all. (Polio-like symptoms with "high spots" on the brain MRI scan).

    Interesting and informative topic - thanks xks. It's pretty clear to me now adrenal problems went left untreated.
     
    Invisible Woman likes this.
  10. jace

    jace Off the fence

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    Justy said
    That is my feeling too.

    Xks, where are you getting your information from? You seem very knowledgeable, and definite. I'm following Dr Peatfield's advice at present.

    I'm also taking LDN, Cats Claw and AllicinMax, plus nutritional support.
     
    Invisible Woman likes this.
  11. jeffrez

    jeffrez Senior Member

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    I guess I misunderstood when you said you always had normal thyroid panels. So were they in the normal range, or weren't they? A little confused on that point, apologies.

    For me there is no doubt of an adrenal/thyroid link, as my greatly elevated TSH normalized when starting licorice extract and bovine extract. The catch-22 comes in when the adrenals reach the maximum amount of functioning they can reach on their own, but it's still not sufficient to produce the amount of cortisol needed to allow enough T3 into the cells to start effecting further systemic & adrenal repair. In that case, you have to find a way to increase cortisol enough to be able to begin tolerating thyroid hormone so that the adrenals can get more repair, and hopefully go from there, eventually weaning off the cortisol support as the adrenals recover more and become stronger. Maybe that requires synthetic corticosteroids at some point, I'm still debating that for myself, whether it's worth the risks, etc.

    I don't think the TSH is *completely* useless. It can at least alert you to a problem if it is greatly out of range. The problem comes with docs & endos relying *only* on TSH and failing to treat when it's in range (which itself is bogus: 0 to FIVE? Are you kidding?). And when there is autoimmune involvement, you're right, it becomes basically useless. The best way is to treat according to symptoms, body temp. etc.

    I wonder, have you ever tried natural OTC thyroid extracts, like nutri-meds thyroid caps? Those look a lot milder than prescription thyroid meds, seems to me maybe those might provide a good entry point to start bringing thyroid up gradually enough where the adrenals can repair without crashing from too much T3.

    This is a good topic, thanks for starting this thread. It's pretty obvious, at least to me, that nothing is going to have much chance of repair in respect to ME/CFS if adrenal & thyroid hormones aren't optimized. The cells just don't have enough energy to repair and regen like they need to.
     
    Misfit Toy and jace like this.
  12. Noah GB

    Noah GB

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    I realize this is an old post, but your T4 results caught my attention as I was searching through the forum. My T4 was 21 pmol/L 4 years ago, then it's steadily declined to 14 pmol/L now, along with a morning cortisol of 320 nmol/L; evening is 110 nmol/L. I'm curious what your recent values are, and did you start any other treatments? Thanks.
     
  13. justy

    justy Senior Member

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    A lot has happened since then! my T4 continued to decline until it hit 11.

    In the meantime, before this decline I tired Armour thyroid under a specialist in the UK. He diagnosed me with subclinical hypothyroidism. On a low dose of Armour I felt better and had one great summer. After that I crashed really hard and never recovered back to my baseline. I became hideously dizzy - this lasted 5 months. I stopped the Armour, although the specialist wanted me to take more.

    Dr Myhill explained to me that my adrenals were not in a good place so taking armour was like putting your foot hard on the accelerator but at the same time jamming the brake on - eventually it all burnt out.

    I did a 24 hr cortisol saliva test (Genova) which showed normal waking cortisol, but then drops dramatically at midday and stay way below normal until the next morning. DHEA VERY low.

    Tried supplementing DHEA but couldn't tolerate.

    Since then I have seen KDM in Belgium who has diagnosed me with ME caused by longstanding untreated Lyme disease (with co infections), and I have been on various treatments for this.

    A lot of people with Lyme get thyroid issues, but many find they no longer need thyroid meds once Lyme and co are dealt with. This is my hope as I cant tolerate the thyroid meds or adrenal meds. I cant take steroids to help adrenals as I get steroid psychosis from even tiny amounts. I have also developed MCAS which is massively complicating things for me.
     
    MEMum likes this.
  14. Misfit Toy

    Misfit Toy Senior Member

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    I just had thyroid removed. Not having fun. My adrenals were already low. Two weeks out of surgery and I'm beat and adrenals are effected. Like Justy, I'm having problems with adrenal meds...always have. And thyroid meds.

    But I have to say, most people do better on T3 meds because they can't convert T4 to T3. It's calling pooling. The T4 gets stuck in the cells.

    This is a hard long road. I'm worried that with my adrenals being crap, thyroid meds, which I can't live without will be a major issue.
     
    justy likes this.
  15. Strawberry

    Strawberry Senior Member

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    This was an interesting thread! My thyroid has been checked over and over AND OVER, including just two months ago by Dr. Kaufman. Always have been told its fine. Yet I sit here in my knee length winter coat. It is the only way I can keep my hands warm enough to type. And a blanket over my legs to keep my feet warm.

    Is there anything natural I could try? When all Drs including Dr K. come to the conclusion that my thyroid is fine, I'm wondering if there is something I could do to try without a prescription. My adrenals are fine.

    Misfit I hope you get some relief soon!
     
    Misfit Toy likes this.
  16. MAF14

    MAF14 Senior Member

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    @xks201 Has the high dose T4 worked for you all this time?

    Any adjustements or revelations?
     
  17. Misfit Toy

    Misfit Toy Senior Member

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    @Strawberry -Nature throid is all natural and it's what I am taking. I'll bet you can find it on the internet. My Doc sells it without prescription.
     
  18. MAF14

    MAF14 Senior Member

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    That's strange that it's not prescribed.. When I looked it up it said it was essentially generic Armour which contains T4/T3.

    How is that legal?
     
  19. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I also have hypothyroid symptoms with normal labs.

    I let my doctor think she was prescribing low dose synthroid for depression (which I don't have).

    I titrated up the dose until the pain from cold stopped. What a relief.
     
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  20. MAF14

    MAF14 Senior Member

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    Do you go solely by feel or do you monitor labs also?
     

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