The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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how relevant is hypothyroidism to CFS?

Discussion in 'Thyroid Dysfunction' started by el_squared, May 16, 2016.

  1. el_squared

    el_squared

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    Hi guys,
    So I was diagnosed with CFS last year and I have been pretty consistently sick for the past two years (after 20 plus years of being more functionally ill -- Celiac Disease, fibro, IBS, etc). I've been on disability for the past 9 months and I am very weak and spend a lot of time in bed. I also have bizarre neurological issues now (after many tests it has been deemed a "functional neurological disorder" that involves large movements -- involuntary jerks of the head, arms and legs).

    A functional medicine doctor recently diagnosed me hypothyroid. This, after many years of mainstream docs saying they don't see anything of note in my lab numbers. I was given some compounded T3 in small amounts to start. I went with just T3 to start because I have been told by a few practitioners that what stands out in my labs, slightly, is low T3.

    However, I haven't been taking it, because after I started taking it I had a crash. It could have been related to something else, but I needed to stop LDN and the thyroid med to see what medicine was doing what. Weeks later, I'm still feeling really terrible.

    Anyway, I'm just wondering if people who treat their hypothyroidism feel that has greatly helped their CFS, or only mildly?

    I know so many people who are hypothyroid, or have hashi's, but they're not bedridden like me.

    Thanks for your thoughts.

    Laura
     
  2. ahmo

    ahmo Senior Member

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    I've found getting thyroid right to be a foundation for moving on. Thyroid affects adrenals, and so much more.

    If you have Hashimoto's, LDN can cause flares, sometimes people have to decrease LDN.
     
  3. el_squared

    el_squared

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    Thanks. I don't appear to have Hashi's. No antibodies seen in tests. What medicine do you take?
     
  4. Old Bones

    Old Bones Senior Member

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    @el_squared I noticed only one change after starting thyroid medication for hypothyroidism. It seemed I had regained some of my intelligence, but only with respect to being able to express my thoughts verbally (eg. discuss politics, current affairs, philosophy). Strangely, none of my other cognitive issues improved (concentration, memory, math, music). And, thyroid medication did nothing for my endurance, nor did it affect my neurological, immune system, cardiac or orthostatic problems. Hypothyroidism, for me, is clearly a co-morbidity, and not the real diagnosis (for those who might be inclined to deny the existence of ME).

    I'm very sorry to hear you are bedridden.
     
    Wayne and Gondwanaland like this.
  5. el_squared

    el_squared

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    Thanks.
     
  6. Kati

    Kati Patient in training

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    Hi @el_squared, hypothyroid and ME have come together in my case, and i feel I have been undertreated all along.

    I thing there is a strong HPA axis component with this disease, why, we don't know yet.

    My TSH is now under control but as of late my free T4 is low, so we have added Synthroid to Cytomel.

    Do you have symptoms of hypo, like weight gain, hair loss, feeling cold, etc?
     
  7. el_squared

    el_squared

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    Yes in recent years I have had about 40lbs of weight gain. I was pretty skinny because of years of untreated Celiac Disease. Then I was diagnosed in about 11 years ago, in my mid thirties, went gluten free, discovered chocolate, and the weight piled on. So I'm overweight now -- 20 to 30 pounds. I have always tended to be cold, I have always had really bad constipation. My hair has shed quite a bit in phases. It stopped after going gluten free, but then in recent years it has happened again in spurts. My TSH is rising, it was about 2.7 on the latest test. Overall, practitioners have agreed that my T3 is on the low side. The mainstream endo always maintained that I was fine, but of course alternative healers disagree. I'm seeing a functional med MD now and she says I'm hypothyroid. I have no elevated Hashi's antibodies.
     
  8. el_squared

    el_squared

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    It seems the pituitary gland is part of thyroid issues (I'm just learning). Is the pineal gland in the brain involved too? I have a sizeable pineal cyst in my brain. It appears to not be growing, and is considered benign, but I have to get periodic MRIs to make sure it's not growing in the future.
     
  9. u&iraok

    u&iraok Senior Member

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    Yes and no. It's like it's connected and separate.

    I had adrenal problems for years before I got ME/CFS and finally treated it but I think the damage was done.

    My ND said everything pointed to a problem with my pituitary. So I treated all parts of the endocrine system.

    Then after I got ME/CFS my thyroid went out of whack. I think it may have been partly due to too much green tea which has fluoride in it.

    The thyroid symptoms were extremely yukky and once I treated them I felt much better but I still had ME/CFS of course but yet my ME/CFS felt a little better than before.

    I do periodically feel the thyroid symptoms coming back and treat it again. So it's like something is causing the endocrine system to 'go out'.

    I took/take Standard Process PMGs for all parts of the endocrine system. You have to be careful because if you treat one part alone another can get out of balance, as with adrenals/thyroid.
     
  10. Leopardtail

    Leopardtail Senior Member

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    Laura,

    Cytomel the pure T3 supplement is assumed to be for people with severe hypothyroidism. For slight issues Sarah Myhill uses a mixed T3/T4 solution to keep the dose low. It might be worth checking that your T3 is appropriate dose wise.
     
  11. wastwater

    wastwater Senior Member

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    I have the thyroid without antibodies thing and always thought of it as a bit of a marker,I wonder could POTS be another marker and do people tend to get either or.
    Are there people with both POTS and hypothyroidism
     
  12. poohsilk

    poohsilk

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    Laura, I have had "CFS" for many years. 5 years ago got active Lyme on top of it. Anyway this past winter a new Doc started me on HC first as one should get the adrenal up first then on to T3 slowly, adding that to my Armour thyroid which I have been on for years at a very low dose. I also take 1 adrenal cortex supp. It has gotten me out of bed so although that is now a full cure it is a start. We are trying other things as well. The idea is to bring up my metabolism, improve my methylation and detoxification next and help my body help itself.
     

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