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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CFS/ME and intracellular hypothyroidism

Discussion in 'Latest ME/CFS Research' started by pattismith, Jan 9, 2018.

  1. pattismith

    pattismith Senior Member

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    @BadBadBear

    thank you for your precious informations from your experience.:)

    I feel my temperature is much higher since I started T3!

    You said it was a long road to find the optimum T3 dosage for you, I wonder if some of the symptoms I have will resolve with the T3 treatment (maybe you had it and you can answer me):

    Tinnitus (ringing in the ears)
    earing impairment
    dysgueusia (weird taste)
     
  2. Rlman

    Rlman Senior Member

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    @BadBadBear i actually am not sure whether the cold body issue is thyroid related or not but am considering a t3 trial to find out. in fact i've never read of anyone who was hypothyroid needing as many layers as me, so that's why i not sure its thyroid. but since i havn't found any other cause so far t3 is probably worth a try. i once asked an ND if his thryoid patients wore so many layers he said no. thanks for sharing your experience with t3 and your symptoms before/after, i really appreciate it.

    That is a good point of whether body intentionally making body such a cold temp or its caused by thryoid or something else. i am thinking the latter atm.
     
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  3. BadBadBear

    BadBadBear Senior Member

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    My tinnitus did not resolve at all. Don't know about the othr but not sure if they are hypo or dysautonomias?

    On the negative side, my body now reacts with energy sometimes when I am sick with much worse palpitations or high heart rate, which I never had when hypo. I have tried to manage those things by decreasing thyroid and going slightly hypo but that feels miserable, too.
     
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  4. Learner1

    Learner1 Professional Patient

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    This is something to be very concerned about. A ferritin level over 400 should be investigated.

    When mine hit 605, my doctors sent me for a CT scan and tested a bunch of cancer markers to see if my cancer was back. Fortunately, it wasn't.

    Then they thought it was my viral and bacterial infections sitting in my liver, which was difficult to test for, so they treated the infections.

    However, I also noticed on my 23and me results that I had one SNP for two different HFE genes, giving me a milder version of heriditary hemochromatosis, the most common genetic defect in the US. It hadn't been a factor before my hysterectomy, but without monthly bleeding, iron built up. People with 2 copies of the main hemachromatosis gene notice it much earlier and its worse in men.

    A hematologist warned that I was at risk for multiple organ failure if I didn't get it treated, and he said that it alone could be causing much of my fatigue.
    The solution was to have 250ml of blood removed every 3-6 weeks until my iron level came down, and then maintenance phlebotomies every 3 months. My main doctors want me to keep my ferritin between 60 and 100 - they said mitochondria won't work properly if its below 60.

    To look for this problem, you'd want to have an iron study done, consisting of TIBC, UIBC, serum iron and iron saturation, as well as serum ferritin. These are helpful resources:

    http://www.irondisorders.org/

    https://www.hemochromatosis.org/
     
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  5. Learner1

    Learner1 Professional Patient

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    Tinnitus can have other causes. Have you looked into your methylating nutrients?
     
  6. Wonko

    Wonko Senior Member

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    The other side.
    @Learner1

    I am aware and have ordered an iron panel. ATM I am just regarding it as a nonspecific inflammation marker, the chances of it being more than that are apparently only 10%, and the iron panel should give me the info needed to determine that one way or the other.

    Thank you for your concern but ATM I am on top of it (well I will be as soon as I am well enough to actually get outside and do the iron panel ;))
     
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  7. BadBadBear

    BadBadBear Senior Member

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    I do use methylation supps.

    The only thing I found that affected it was VNS laser - I had only one treatment, and that night my tinnitus made a whistle like a tea kettle winding down and went quiet for a few days! I have not tried it again as I noticed no other improvements. I may purchase a VNS Tens unit with an ear clip at some point and try that. :)
     
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  8. Learner1

    Learner1 Professional Patient

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    Glad you're on top of it...

    I had over a dozen doctors of different specialties voice concern over ferritin as low as 250. Normal people have levels below 150.

    My ME/CFS specialist encouraged me to deal with it as he said the chronic/reactivated infections I had used it for food. In particular, chlamydia pneumoniae loves it.

    Ferritin does not belong in serum. Its a sign that something is wrong. The good news is that finding the reasons may lead you to treatment that reduces ME/CFS symptoms.

    Attached are some articles I found helpful in figuring out the cluster of issues causing mine and getting treatment that's helped. If you're already familiar with them, great! But I included them in case someone else is in the same boat.
     

    Attached Files:

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  9. Wonko

    Wonko Senior Member

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    The other side.
    @Learner1 Our health system (the NHS) says that if I am overweight, which I am, or diabetic, which I am, then anything below 1000 can be ascribed to that and ignored.

    Wonderful world we live in eh....

    I am aware that 1016 is a bigger number than 1000 lol

    ETA - thank you for the papers, I will work through them as I am able :)
     
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  10. Learner1

    Learner1 Professional Patient

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    I certainly didn't mean to insult your math skills. ;) I enjoy your comments and learning from you.

    Hope you enjoy the papers and can do some strategic armtwisting to get good help. Best wishes...:thumbsup:
     
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