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Thyroid gland hormones and thyroid function tests in ME/CFS: MEA website poll (April 2017)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Apr 1, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Thyroid gland hormones and thyroid function tests in ME/CFS: MEA website poll (April 2017)

    This month's MEA website poll is covering the function of the thyroid gland, thyroid gland hormones, and thyroid function tests in relation to ME/CFS

    We are asking these questions because:

    * Some of the symptoms of low thyroid function/hypothyroidism overlap with ME/CFS – so this is a condition that MUST be excluded before a diagnosis of ME/CFS is confirmed

    * Hypothyroidism is common – so some people will have ME/CFS and thyroid disease and the latter may be misdiagnosed as a slow deterioration in ME/CFS symptoms

    * There is uncertainly over whether thyroid disease is more common in ME/CFS – research evidence indicates that this is not the case



    You can fill in the MEA survey on the home page of the MEA website:
    www.meassociation.org.uk

    Overseas votes are welcome in this survey

    I have also provided some detailed background information on the subject of thyroid gland hormones and thyroid function tests in relation to MEA:

    http://www.meassociation.org.uk/201...tests-in-this-months-mea-survey-1-april-2017/

    [​IMG]

    [​IMG]

    [​IMG]

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Last edited: Apr 1, 2017
  2. dangermouse

    dangermouse Senior Member

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    I was diagnosed as borderline hypothyroid by endocrinologist a few years ago, with instructions for GP to monitor regularly & that eventually I'd likely need treatment.

    My TSH was 6.4 (but can fluctuate and mostly above 5) and because of that my GP has said no treatment needed.

    I have started taking a small amount of Kelp supplement to try to improve thyroid function.

    Edit: No longer taking Kelp supplements.
     
    Last edited: Apr 1, 2017
  3. charles shepherd

    charles shepherd Senior Member

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    I assume/hope you are still having regular thyroid function tests with the GP - you should be!

    If the TSH remains elevated it would be worth checking for the presence of thyroid peroxidase antibodies

    Basic info from the Mayo Clinic on thyroid peroxidase antibodies:

    What is a thyroid peroxidase antibody test? Does it diagnose thyroid disease?


    Thyroid peroxidase (TPO), an enzyme normally found in the thyroid gland, plays an important role in the production of thyroid hormones. A TPO test detects antibodies against TPO in the blood. If you've been diagnosed with thyroid disease, your doctor may recommend a TPO antibody test — in addition to other thyroid tests — to help determine the cause.


    The presence of TPO antibodies in your blood suggests that the cause of thyroid disease is an autoimmune disorder, such as Hashimoto's disease or Graves' disease. In autoimmune disorders, your immune system makes antibodies that mistakenly attack normal tissue. Antibodies that attack the thyroid gland cause inflammation and impaired function of the thyroid.

    Your doctor may also order a TPO antibody test if you are pregnant and have an autoimmune disease, especially one that involves the thyroid, such as Hashimoto's disease or Graves' disease.

    Some people with TPO antibodies may not have thyroid disease. However, the presence of TPO antibodies may increase the risk of future thyroid disorders. If you have normal thyroid function with TPO antibodies, your doctor may recommend periodic checkups to watch for future thyroid problems.

    CS
     
  4. dangermouse

    dangermouse Senior Member

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    I should be due another blood test soon. I should check.

    Thanks for the information about TPO. I'm not sure if my GP will do that test, I will ask him.

    Thanks.
     
    Invisible Woman likes this.
  5. Invisible Woman

    Invisible Woman Senior Member

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    Do you want those of us with already diagnosed thyroid diseases like Hashimoto's that are being treated to also fill this in @charles shepherd? Or is this for people who have not been diagnosed?

    Another can of worms is folk with a diagnosis and who believe their current treatment is ineffective, of course.
     
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  6. Old Bones

    Old Bones Senior Member

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    @charles shepherd Am I correct in assuming that a person diagnosed with hypothyroidism who is taking thyroid medication should answer based on their results prior to starting supplemental thyroid hormones?

    I was diagnosed as hypothyroid approximately 25 years post ME. Although Armour thyroid medication achieves blood test results my physician is happy with, it has not resolved my symptoms, many of which appear on both ME and hypothyroid lists.
     
  7. Jan

    Jan Senior Member

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    You could be considered hypothyroid depending on the results of your free T4. Next time you get tested, ask for both results, if you are symptomatic and/or your free T4 is low then you could probably be helped by starting treatment.

    Normal TSH (UK) is 0.4 to 4.5, so you are outside the range

    Normal free T4 is 10 to 24
     
  8. duncan

    duncan Senior Member

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    I am confused as to the survey's purpose.

    If your purpose is to suggest pwME get their thyroids checked as part of a differential diagnosis, then why not just say that apart from a survey?

    If you wish to find data relative to what portion of pwME have thyroid issues, then shouldn't you specify only that? If that is the case, then I am curious as to why, i.e., what is the logic? Are you suggesting misfiring thyroids are behind ME/CFS because they are tied into a fatigue symptom often associated with ME/CFS? Are you looking to see if there is a high correlation between problem thyroids and ME/CFS, and will try to infer something from these findings, e.g,what might be causal in one is causal in the other?

    I'm just trying to understand the goal of this exercise.
     
  9. Wonko

    Wonko Senior Member

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    The other side.
    I've been taking desiccated thyroid capsules for about the last 6 months. I am taking them instead of kelp because they are more effective and because I have read that if the thyroid is struggling/under attack then simply taking more trace minerals to up it's output is considered a risky strategy, with extra thyroid hormones the worst that can happen is I could become hyperthyroid until I stopped/reduced supplementation, which is pretty easy to detect if I'm looking for it.

    Dessicated thyroid, why am I taking it? I started simply because my baseline metabolic rate had dropped very low, if I ate more than around 800kcal a day then I put on weight. I found more or less immediately that, whilst i could still be hot, I stopped sweating at night (and could sleep), that my pain levels dropped to the point where my routine night painkillers got me stoned so i discontinued without ill effect, at least for several weeks. My mood improved, my ability to not over react when things, as they do, go wrong, improved tremendously, My skin over sensitivity more or less stopped. I got some brain function back, still very limited in what I can do - I can maybe manage a task with 3 parts instead of being overwhelmed with a 2 part task. My energy levels have gone up slightly, not much, which taken with the drop in general pain levels is a problem - I didn't realise how much I was using pain as an indicator of when to stop - so, under the painkillers which I am now taking again, the pain, ache ill, sick and dizzy, are all back - so I've obviously been doing too much.

    So.....I'm going to continue taking it, as it helps so much with a lot of secondary symptoms, probably acquired simply because I have been ill so long (according to google it's common for chronically ill people to have issues with t4->t3 conversion, amongst other things), but I've got to get back to resting more. It has answered any question about hypothyroidism being the base cause of my problems, it's become an increasing factor over the last decade (based on symptoms I can attribute to it that resolve with desiccated thyroid) or so but the M.E. is still there, untouched and just as unforgiving under it, and simply discontinuing the desiccated thyroid makes life hell, going back upto the pain, illness levels etc all in one hit is not fun. It was only my intention to take these things for a few weeks to see if they made a difference and then get a private thyroid screen done, but the effects were so fast and dramatic, and the fun of stopping them so extreme, that I've never gotten around to discontinuing them for a week or so to get a clean blood sample to send off to a lab to see whats going on underneath.

    But hey, live and learn.....
     
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  10. dangermouse

    dangermouse Senior Member

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    Thanks for that @Jan i'll do that. Though my GP is reluctant to treat if below 10 for TSH.
     
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  11. dangermouse

    dangermouse Senior Member

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    @Wonko what brand desiccated thyroid do you get? Where from? (If it's OK to ask). My husband has looked into this & would like me to try it but I've shied away from it so far as I doubt my GP would monitor bloods if I tried it & I'd struggle to get to surgery.

    How do you know how much to take?

    Hope you don't mind me asking.
     
  12. charles shepherd

    charles shepherd Senior Member

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    Yes please

    CS
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Yes - the answer should be based on thyroid function test results prior to starting any treatment for a thyroid disorder

    I think it will be helpful (if we can do this within the word count for the question) to add ..and prior to any treatment being started...
     
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  14. charles shepherd

    charles shepherd Senior Member

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    The main purpose of this survey is educational through the background information that is being provided - as it is with many of our MEA monthly surveys

    In this case the background info is being used to explain how the thyroid gland functions, how it can be tested, and to make sure that thyroid function is ALWAYS assessed before a diagnosis of ME/CFS has been confirmed AND when there is a deterioration in symptoms for no apparent reason

    The research information is rather secondary here

    But it will be interesting to see what percentage of the people who respond have either confirmed or borderline hypothyroidism and whether this is similar to the figures for the normal population

    CS
     
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  15. Wonko

    Wonko Senior Member

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    The other side.
    @dangermouse
    I use raw thyroid, available from bigvits.co.uk
    I started on 1 capsule a day in the morning, I now use anywhere from 2-5 capsules a day depending on activity levels. I try and keep it as low as possible because I am also diabetic and they "can" reduce the effect of diabetic meds. If taking multiple capsules then splitting the dose is generally advised, first lot in the morning, second lot 5-6 hours later. taking them too late in the day can result in T3 levels being too high to allow sleep. Some supplements, such as magnesium can, in my case do, reduce the amount of desiccated thyroid needed to achieve results.I'd strongly suggest you google the symptoms of hyperthyroidism before taking so you know what to look out for as warning signs.

    edit...come to think of it I'd advise you get a thyroid panel done before, I was, am going to use when I get around to it, use http://homebloodtest.co.uk to do this as it was the first recommended people I found, but I haven't actually used them yet, nor do I know if your GP will accept their results, their forums suggest UK GP's will but then they are trying to sell a product ;)
     
    Last edited: Apr 1, 2017
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  16. dangermouse

    dangermouse Senior Member

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    @Wonko thanks for the information. I've decided to stop the Kelp supplement and see GP to check thyroid in a month. Depending on what happens I can make a decision about trying desiccated thyroid. :thumbsup:
     
    Wonko likes this.
  17. charles shepherd

    charles shepherd Senior Member

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    Not in my background information to the MEA website survey but worth noting that another cause of thyroid malfunction is what is called central hypothyroidism

    Central hypothyroidism
    is defined as a reduction in circulating thyroid hormone as a result of inadequate stimulation of a normal thyroid gland by TSH

    Central hypothyroidism can be secondary, due to pituitary disease, or tertiary, due to hypothalamic dysfunction - which could be relevant to ME/CFS in view of the fact that hypothalamic dysfunction occurs in ME/CFS

    Diagnosis of central hypothyroidism is established by the presence of normal to low-normal TSH on the background of low-normal thyroid hormones, confirmed by the thyrotropin releasing hormone stimulation test.

    Therapy includes use of levothyroxine titrated to improvement in symptomology and keeping free T4 in the upper limit of normal reference range.

    Research review:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3169862/

    [​IMG]
     
    Last edited: Apr 1, 2017
  18. Invisible Woman

    Invisible Woman Senior Member

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    Good advice from @Jan. I would mention though that some UK labs will not carry out the T4 test unless a) your TSH is elevated beyond a certain point or b) you are already taking levothyroxine. So even if your doc is prepared to ask some labs won't do it anyway. Hopefully, the one your test is sent to will do it for you.
     
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  19. dangermouse

    dangermouse Senior Member

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    I hope so :)
     
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  20. daisybell

    daisybell Senior Member

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    I developed Graves' disease several years after ME... dealing with the effects of rapidly reducing thyroid levels whilst already fatigued was horrible. I haven't had any problems with my thyroid since I started on LDN - could be coincidence of course, but I was borderline hyperthyroid when I started it, and I've been within the normal range for three + years now.
     

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