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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Low T3 and Normal TSH? Not hypothyroidism?

Discussion in 'General ME/CFS Discussion' started by JBoneske, Apr 21, 2018.

  1. JBoneske

    JBoneske

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  2. nanonug

    nanonug Senior Member

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  3. JBoneske

    JBoneske

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    That’s not what I’m suggesting. I don’t care about the name.
    I’m running by the thought to you guys if you think that low thyroid(not hypothyroid) function could be a cause of CFS. This is saying that in the study that people who had lower T3 and T4 with normal TSH often had CFS. If there is any truth to this, it would be easy to fix.
    Be interested to see people’s thyroid numbers.
     
  4. Runner5

    Runner5 Senior Member

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    Well the Hypothyroid test is notoriously unreliable and 50% of hypothyroid patients are undiagnosed (thus says the Internet), does the thyroid cause CFS? Not that we know of scientifically. However, hypothyroidism causes many of the same symptoms.

    "it would be easy to fix" -- well not actually. Some people respond better to thyroid medication than others, some people believe it will fix the fatigue and then it doesn't.
     
  5. Judee

    Judee Senior Member

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    The researchers in that link seem to be saying there is a correlation but it's like they are also saying that even they don't know if that means causation and would need to study it more.
    That being said, a lot of us here do have thyroid issues and have tried that route first and in my case, revisited the issue many times trying to get the right fit (and probably will again). (It's the first thing my doctor suggested when I mentioned fatigue issues.) However, just looking at the posts, I would have to say that if it was the only issue causing this disease, I think we would see a lot more comments from people celebrating the treatment and saying it "cured" them.
    Unfortunately, this disease is just too complex. I don't think there is going to be a one-size-fits-all answer.

    (I don't think nanonug was asking you to look at those articles as her answer to you. I think some people's posts just automatically include the last post they have added to. I'm newer to this blog too and it's taking me a while to get used to everything here.)
     
  6. JBoneske

    JBoneske

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    There’s something wrong though when you have low T3 and T4 and your TSH doesn’t go up.
     
  7. Wonkmonk

    Wonkmonk Senior Member

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    There could be a problem with the pituitary gland. It may be secondary hypothyroidism (pituitary not producing enough TSH although it should produce more). This is quite unlikely but it is a possibility.

    With respect to CFS in general, I'd say the lower thyroid hormones are a marker or a symptom rather than the cause of the disease.
     
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  8. JBoneske

    JBoneske

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    I’ve always had low thyroid and felt really well especially after going on trt. Had low testosterone and totally fixed that and got really healthy and happy until 16 months ago when this hit.
    Since then it’s been a gradual free fall the other direction.
    Theres no reason to all of a sudden get sick with the same t3,T4 and TSH that I’ve always had. Just looking for any possibilities which all of you have obviously done. Oh well. Thanks for the responses.
    I have 1 more test on Tuesday doing an EEG. That’s not gonna find anything related to my symptoms.
    Friday I see GP and need to get officially diagnosed with CFS. Everything will be ruled out that I can think of.
     
  9. Judee

    Judee Senior Member

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    Yes, definitely. Something is not responding as it should. I think that whatever happened to cause this disease (and many feel like it was a virus of some sort, myself included) knocked a lot of things out of whack in our bodies but which came first the virus or the thyroid issues or something else? Did you get a virus 16 month ago?

    The article you reference mentions rT3 and I really found the Wilson Temperature Protocol interesting because it talks about that and about the scientific fact that enzymes only work at 98.6 degrees. Our systems need working enzymes in order to do everything they do to function properly. I think a lot of PWC tend to be low thyroid and low temp. My average temperature seems to run about 96.2.

    I have theorized that for some this virus in our system keeps re-activating (per Dr. Montoya’s theory) because we were never able to mount a full defense against it by running a legitimate fever. My fevers tend to be around 98.7 which doctors don’t recognize as a fever but which definitely feels like a fever to me but still not enough to kill a virus really.

    Some people here have talked about feeling better after getting a cold or taking Equilibrant and getting a fever around the 3rd week. Is that fever what finally starts to get at that virus hiding in our cells? I think that might be key.


    Also I read about a teenager who was diagnosed with Lyme’s disease who finally got better after going to Germany (I think) where they treated her by raising her body temperature (I don’t remember how high but I think it was to 106).


    Anyway, I did try the Wilson Temperature Protocol with microdoses of the T3 medication on my own and felt better when my temps went up to 98.6 or above but I don’t have a doctor in our area that will help me with this. (Plus, even the microdoses of the T3 affected my heart.)


    There is a doctor in Beloit who said he has used this protocol but prefers to use others instead so I don’t think he would help me and from what I have read on his site, his plan is too similar to what my own doctor was doing and I was having a lot of problems with that.


    Anyway, hope you find something that helps. Please keep us posted. (Thanks for bearing with my rambling.)
     
  10. JBoneske

    JBoneske

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    No, that’s excellent. Very interesting. Never would have thought about body temperature and fevers. And yes, it seems like that final time you get sick with a typical cold or flu or whatever, it just never goes away. Thank you. Excellent post.
     
  11. Runner5

    Runner5 Senior Member

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    "My fevers tend to be around 98.7 which doctors don’t recognize as a fever but which definitely feels like a fever to me"

    Me too. My body temp is always low and has been since I was a kid but I run fevers a lot but it just raises my body temp to up around 99 so nobody cares or counts it as a symptom. It definitely feels like I have a fever though. Like today, I definitely have a fever. Each new doctor I've had assumed I had a bad thyroid but my results were always in the normal realm.

    @JBoneske - I hope your GP finds something and it's very treatable and you feel better soon. Good luck at the doctors and testing, that's always very stressful. ((hugs))
     
  12. alicec

    alicec Senior Member

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    If it were so easy, those of us who have tried T3 and iodine, as recommended in the paper, would be cured.

    I'm certainly not and I haven't come across anyone else who thinks that T3 therapy cured their ME/CFS. That doesn't mean that it might not be helpful, but even that may be problematic. It helped me for a while but then drove me into collapse.
     
  13. tiredowl

    tiredowl

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    Hard to say. I felt my worst when TSH was elevated. But I don't know it causes same symptoms as ME or CFS like chills and brain fog at the same time?
     
  14. Judee

    Judee Senior Member

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    I agree that there definitely is no easy fix. For T3 we have to be super careful. Another commenter added it recently and had a crash after doing so. I think PWC are super sensitive physiologically so anything we try--even vitamins and other supplements should be done very slowly and in microdoses. To my mind, that applies even more so with prescription medications. Our own thyroids make a ratio of 97%-T4 to 3%-T3. Some online doctors are starting to prescribe a bio-identical compounded version to match these amounts more closely. Even the natural desiccated versions don't match those ratios and I think that is why I had problems with them.
     
  15. pattismith

    pattismith Senior Member

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    I always had T3 T4 TSH in the lower range, but it worsened with the years going by.

    And I got worse and worse.

    Central hyporegulation (pituitary and hypothalamus) and peripheric resistance to thyroid hormons are the two phenomenons that could exist in a significant subgroup of CFS patients.

    Deiodinases dysregulations can also be involved (it is my case, as my rT3 is elevated).

    Doing a T3 trial is the best way to test if you have this kind of problems.

    Some markers can help you figure out if you have some lack of thyroid hormon action (functionnal hypothyroidism),

    ie beta caroten, cholesterol, ferritin, cardiac echocardiography...

    In my case, low HDL, low ferritin, high beta caroten.

    I have started T3 trial some weeks ago (every 8 hours intakes), with slow increase, and I am improving slowly.
    I still don't have any hyperthyroidism symptoms (heart rate at rest is OK).

    I am ill for 35 years, so I don't expect a quick improvement, but progress are visible now.

    I have to add that the first weeks were very difficult with some agravation at first, but now I am convinced by the results that I am on the right track.

    (in fact I felt immediately relieved of my symptoms when I did a T3 trial with once a day 6 mcg morning dose, du to the non genomic T3 action, but it failed when I tried to increase the dosage and increase the intakes. I chose to still push the trial with 3 intakes a day and to increase slowly to see what happen with the genomic effect, and I started to see the gain after reaching about 35 mcg progressively)

    edit: I also have to take some cortisone from time to time, it helps
     
    Last edited: Apr 22, 2018
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  16. Captain John

    Captain John

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    I do not think that's the cause of CFS but a consequence of it. I myself have been curious precisely because I myself have low T3 but my other levels are normal. There is currently much talk about the existence of subgroups of ME, so that the disease has a common denominator, but may have different subgroups. Believe that's why some benefit from Rituximab and others do not. Maybe low T3 is a subset of CFS patients and maybe we all have low T3 but I think unfortunately it would be too easy if that was the solution :(
     
  17. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Awww, if only finding the cause of ME/CFS were that simple. Many of us have low thyroid and though thyroid replacement is an important part of our treatment, unfortunately it's not the cure for ME.

    Having said that, if you spend any time on popular thyroid forums you'll also find thyroid patients who were misdiagnosed with having ME/CFS when in reality what they had was hypothyroidism (Hashimoto's autoimmune thyroiditis being the most common cause of hypothyroidism). The reason for this being that there are many overlapping symptoms.

    My TSH was never all that high (I think 4.5 if I remember) and my Free T3 & 4 were in the normal range but on the low side. I was fortunate enough to have a smart doc who suspected Hashimoto's based on symptom so he tested me for it and my anti-TPO's were in the 900's. He also ordered an ultra sound which confirmed I had 5 thyroid nodules consistent with Hashimoto's. Without Thyroid replacement I'd definitely be in worse shape than I already am.

    Have you been checked for Hashimoto's? The TSH is VERY unreliable for many of us.

    Best wishes.
    Diane
     
  18. JBoneske

    JBoneske

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    Thanks Diane.
    Unbelievable how people can be diagnosed with CFS when you can diagnose hypothyroidism with simple blood tests.
    Yes, been tested for Hashimotos. My antibodies were low. Don’t have that.
    Yeah, no kidding about if you didn’t treat your Hashimotos. You’d really be bad off.
    Take care.
     

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