Question: Doc Says Something Causing TSH Swings

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Jun 28, 2008.

  1. Elisa

    Elisa Member

    Hi All,

    As many of you know I have had a fever for a year with severe weakness and a few months ago I developed an elevated heart rate which I still have. I have had this DD 12 yrs and I am really scared now.

    I have been to multiple docs and just saw my second endocrinologist regarding a wildly swinging TSH - normal is .3 - 5.5 or so:

    I have had in a few months:

    .02 TSH
    .20 TSH
    3.80 TSH
    2.50 TSH

    All other thyroid test are considered normal...

    This endo says he sees this with people with acute illness in intensive care - but He doesn't know what is wrong with me. Prior to seeing him I have been to two infectious disease docs(mainly for fever) and three rheumatologists and many heart docs.

    Is it time for an oncologist or hematologist? I am so weak I am nearly unable to care for myself at all. I am just so unsure what to do next - just a ball of confusion here.

    I am all alone - really no one to help in any area. No whining really - just what is happening.

    Any imput would be greatly appreciated - truly you are my friends and I am thankful for your help over the many years!

    God Bless,

    [This Message was Edited on 06/28/2008]
  2. moreinfoplease

    moreinfoplease New Member

    and before I had thyroid surgery (half removed) I had some variable tests, high, normal, high. However, yours are very extreme in the changes. I wish I had an answer for you. If you are hyperthyroid then you would have a rapid heart beat. I know that my symptoms didn't always match what the lab tests were indicating.

    I felt at the time that I was rapidly alternating between hypo and hyper. My endo was very dismissive of that idea, but others on the thyroid message board indicated that was possible--that as the body attacked and killed the thyroid gland it released amounts of thyroid into the system, resulting in periods of hyper thyroid, and then other times the thyroid level was hypo.

    I would definitely ask for a full pannel of thyroid tests, tsh, t3, t4, anti thyroid antibody tests (I think there are 2)

    I wish I could be more helpful. My brainfog makes it really difficult for me to put words together so that they make sense.

    There is a really good thyroid message board at which you can ask questions of other patients and also of a woman who wrote a book about the issues. I found it helpful.
  3. Slayadragon

    Slayadragon New Member

    The one place that I've seen thyroid swings like that has been in cases of severe toxic mold poisoning. Going back and forth from hypothyroid to hyperthyroid seems reasonably common (insofar as people have studied this problem).

    All your other symptoms could be attributed to severe mold poisoning as well.

    It's hard to know what to say about your house. You attacked the mold there really thoroughly, and so perhaps it's no longer a problem. My understanding is that this stuff is quite insidious and can grow back without anybody having any idea. That is very scary considering that I'm not sure what to do with my own house, but perhaps it's something to think about.

    Otherwise, I'd still look at the parasites. Perhaps post a question on lymenet? Or get in touch with Linda (munch1958), who is extremely knowledgeable about all the Lyme stuff and also pretty nice. I have her e-mail and can send it to you if you want it. (You might be able to find her on lymenet or the lyme section of this board if you want to write her there.)

    The thyroid stuff obviously is secondary to some other weird CFS thing. My own thyroid function wobbles a lot too (though not like yours), and I'm just sort of going along for the ride. It does seem to be improving as my health in general improves.
  4. Forebearance

    Forebearance Member

    I admit, I do worry about your house too, Elisabeth.

  5. springrose22

    springrose22 New Member

    I have Hashimoto's and tried lots: Cytomel, compounded T3/T4, Synthroid, etc. None of them worked. I have been taking T100 distributed by AOR which was recommended by the naturopath. It works really well for me. In fact, just recently I had decided that I would only take 1 per day and was doing that for about 2 months. Then, I wasn't feeling as well, and my TSH was low, so I started taking 2 per day again, and feel better and my TSH is back to normal. Marie
  6. mbofov

    mbofov Active Member

    Elisa - you have been through the wringer! You might investigate the use of iodine. I know the conventional wisdom says not to take iodine if your thyroid is overactive or you have hashimoto’s disease, but another school of thought believes that iodine has a normalizing effect on the thyroid gland, whether over- or under-active.

    Here are a couple of articles worth reading:

    I’m NOT recommending you start taking iodine on your own because your TSH levels fluctuate so wildly, but I do think it would be a very good idea to find a practitioner (probably a naturopath) who can test your iodine levels and see if it would a good thing for you to take. He or she could monitor your usage as well.

    You might need to go outside the conventional medical box, which hasn’t been able to help you so far.

    Also, have your adrenals been checked? Depleted adrenals can cause severe weakness, another thing a naturopath could help you with that regular docs seem to know very little about.

    Take care –


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