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Help: hyperthyroidism and some strange drug reactions

Discussion in 'General ME/CFS Discussion' started by overtheedge, Sep 22, 2017.

  1. overtheedge

    overtheedge

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    I received a test in may of this year showing me as hyperthyroid, not sure why it is that way, hypothyroidism runs in my family and I was hypo in 2011 or so.


    Maybe it has to do with the meds my doc had me on, a year before the test result showing hyper I had a test showing my thyroid to be normal but I also had a test showing my iodine to be somewhat low so my doc put me on a large bottle of iodine, I must have supplemented iodine daily for something like half a year. I also took methylation supplements for a year and a half leading up to the test if that means anything.


    Not sure if I have any symptoms of hyperthyroidism or not, my pulse has been a lot more noticeable but that may just be me noticing it.


    what do I do if I still have hyperthyroidism when this test I'm going to take in the next few days comes back. I have heard the standard mainstream medicine thing to do is to take a med that destroys part of your thyroid and from then on you have to take thyroid supplements for the rest of your life. does anyone know of a way around that?
     
    Invisible Woman likes this.
  2. Wishful

    Wishful Senior Member

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    My experience with various doctors including an endocrinologist is that they are really quick to make immediate, easy diagnoses on minor evidence (ie. one Tsh test), and furthermore get angry when you mention anything that contradicts their diagnosis. Hormone health doesn't seem to be quite that simple and straightforward to me.

    My advice is to not accept the first diagnosis/advice as though the doctor were divinely infallible. Do insist on more detailed testing (and a second opinion), especially if they want to do something as drastic as destroying part of your thyroid gland. If there's no serious immediate threat to your life or health, give less drastic options a try first.
     
  3. Wonkmonk

    Wonkmonk Senior Member

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    I think I might be helpful here.

    I had complete thyroidectomy for hyperthyroidism 3 years ago, therefore I have some idea of thyroid issues.

    But warning: It is complicated.

    Hyperthyroidism can have the following causes:

    (1) Graves' disease: overactive thyroid due to autoimmunity
    (2) Nontoxic nodular goiter: (strongly) enlarged thyroid - usually still controlled by TSH, so it must be quite large
    (3) Toxic nodular goiter: Benign (non-cancerous) nodule inside the thyroid gland that produces thyroid hormone, not controlled by TSH
    (4) Autonomous thyroid tissue: Parts of the thyroid gland are permanently activated, not controlled by TSH
    (5) Thyroid cancer: Malignant thyroid nodule that produces thyroid hormone, not controlled by TSH
    (6) Temporary hyperthyroidism during active inflammatory process in Hashimoto's thyroiditis (unlikely)
    (7) (High) Long-term iodine overdose

    The treatment or remedy is different for most of these cases:

    (1) Graves disease:
    - Not curable
    - Medication can block thyroid hormone production but can only be taken for 1-2 years max
    - Spontaneous remission is possible but also not guaranteed
    - If no spontaneous remission occurs, the thyroid gland has to be surgically removed or destroyed by radioactive iodine in many cases --> Lifelong therapy with Levothyroxine is required (usually excellently tolerated, but not always)
    - Even after complete thyroidectomy, some symptoms can persist because autoimmunity remains (but most symptoms should get better)

    (2) Low-iodine diet should suffice, surgical treatment/radioactive iodine only required for very large goiters (in that case Levothyroxine therapy is needed thereafter)

    (3) Low-iodine diet might suffice, if not, treatment of choice is usually radioactive iodine, thyroid gland is often still operational after treatment (so no or only low amount of Levothyroxine required)

    (4) Same as nodule, but it usually gets worse and at some point surgery/radioactive iodine is required (this is what I had)

    (5)
    - Depending on many factors, removal of the cancer or observation can be therapy of choice
    - If removal is warranted, complete surgery plus radioactive iodine treatment is needed
    - Lifelong high-dose Levothyroxine is required to keep TSH permanently suppressed

    (6)
    - Hashimoto Thyroiditis is an autoimmune disease that actually destroys the thyroid gland and leads to HYPOthyroidism
    - During the destruction process, a high amount of thyroid hormone can enter the blood stream for some time and lead to temporary hyperthyroidism
    - Low iodine diet is needed (iodine increases inflammation) plus lifelong Levothyroxine treatment (destruction of the thyroid gland through autoimmunity is irreversible)

    (7) Stop iodine supplements and/or high-iodine foods (e.g. certain algae)

    For a complete evaluation of the thyroid gland, the following lab tests are required:

    Thyroid-stimulating Hormone
    free T3
    free T4
    Anti-thyroid peroxidase (anti-TPO) antibodies
    Anti-Thyroglobulin (anti-Tg) antibodies
    TSH-receptor antibodies
    Serum iodine

    Additionally ultrasound of the thyroid gland is required to check nodules. If nodules are present, scintigraphy is required to determine the nature of the nodules.

    Have you had any of the above lab values tested? If you feel comfortable posting them, I might give you some more suggestions what is probably going on.

    I am very confident this is all correct, but please check any of this information with your health care professional also.
     
  4. overtheedge

    overtheedge

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    @Wishful going for a second opinion seems like an excellent idea, thank you

    @Wonkmonk
    Currently:
    TSH 0.14 mIU/L out of a reference range of .4-4.5
    T4, free 1.3 Ng/dL out of a reference range of .8-1.8
    T3, free 4.5 pg/mL reference range 2.3-4.2
    T3 reverse 19 ng/dL out of 8-25

    Last year around this time
    TSH 1.27
    T4, free 1.1
    t3, free 3.9


    In the past my thyroid peroxidase and thyroglobulin antibodies have been at safe levels, maybe I should ask my doc to retest these?
    Glad to have the info, I'll keep the ultrasound in mind.
    I've checked my vitamins for iodine, I've also been advised to avoid fish and iodized salt till I get this figured out
    Have a good one
     
    Invisible Woman likes this.
  5. Invisible Woman

    Invisible Woman Senior Member

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    I have Hashimoto's but a sibling was diagnosed with Graves disease. We're both pretty confident we were diagnosed correctly, so it can happen.

    I can't really add to the great info that @Wonkmonk gave.

    Hope you get some answers soon
     
  6. Wonkmonk

    Wonkmonk Senior Member

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    @overtheedge These values suggest mild hyperthyroidism. TSH is still measurable, so not totally supressed, fT4 is in the normal range and fT3 just above normal. You describe mild heart palpitations, and that is consistent with the lab test (it's also how it started for me several years ago).

    Sadly, these lab tests don't tell you what the reason for the mildly overactive thyroid is. Assuming you don't have a large goiter, option (2), and auto-antibodies are still negative, option (1) and (6), It could be either of the following:
    (3) Toxic nodule
    (4) Autonomous tissue
    (5) Thyroid cancer (very unlikely but theoretically possible)
    (7) Iodine overdose

    I think at this point it is important to find out, what it is, because there are different treatment options.

    So I would suggest the way forward now is to see an endocrinologist and again do a complete thyroid autoimmunity panel (to be safe) and an ultrasound to see if nodules are present.

    Assuming autoimmunity is still not present, then there are two options:
    - No nodules = eliminates (3) and most likely (5) --> See if TSH normalizes with low iodine diet, if TSH doesn't normalize scintigraphy is required to test for autonomous tissue.
    - Nodules are present --> Scintigraphy is necessary to determine if the nodules are toxic or non-toxic and if autonomous tissue is present (for treatment see the above), if only non-toxic nodules are present, they can be tested for cancer via needle biopsy.

    That said, it is very likely that irrespective of the cause, TSH will normalize and symptoms disappear with a low iodine diet, because overactivity is so low. I would still strongly advise you to acertain what the actual cause is, because you can get much better results if it is known early and treated appropriately and everything regarding the thyroid usually gets worse over time if left untreated, even if lab tests stay normal for a while.

    I so much hope for you that you can keep your thyroid. Yes, thyroid hormone replacement is easy and usually well tolerated, but I am often thinking that I lost a vital part of my body and I am reminded of this everyday when I have to take the hormones.

    Had I tested my thyroid years earlier, I might have not needed surgery at all.
     
    Last edited: Sep 24, 2017
    overtheedge likes this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    I did not realize that and am sorry to her that @Wonkmonk. Thank you for posting such detailed info about thyroid issues which I think will be helpful for many people (and I have bookmarked it for future reference)!

    All of this info matches 100% with what my Endo has told me. I tested positive for both Hashi's Abs in Oct 2013 and was prescribed low dose Armour Thyroid. I was slightly HYPOthyroid at that time but my Endo explained how with Hashi's, the thyroid can bounce between the two while it is still fighting the autoimmune attack.

    I have never done well with iodine, seaweed, carageenan, or products containing iodine. I no longer have allergic reactions to food but I believe this one is more of a thyroid issue for me. I don't think I have ever had my serum iodine tested... but I could be wrong?

    I had an ultrasound of my thyroid in 2013 and no nodules at that time but when my Endo feels my thyroid at check-ups now, he says that it feels fibrous like a thyroid of someone with Hashi's (but nothing more to do about it at this time). I avoid gluten though to try to reduce the autoantibody attack b/c my Endo said that the gluten molecule looks similar to what the Hashi's Auto-Abs attack (am certain I did not explain that one well)!
     
  8. Invisible Woman

    Invisible Woman Senior Member

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    Wow! Really?

    That's interesting. I was diagnosed with Hashimoto's several decades ago. For the last decade it's been very well controlled and suddenly its way off with my TSH through the roof.

    I've been trying to figure out why - though I don't eat much wheat maybe it's worth considering going gluten free.
     
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  9. Wishful

    Wishful Senior Member

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    Another possible reason for elevated Tsh might be neuroinflammation, as in ME/CFS. That may produce extra kynurenines, including picolinic acid, which elevated macrophage inflammatory protein, which elevates Trh, which elevates Tsh. My Tsh is mildly elevated, but I don't show the normal hypothyrodism symptoms (preferred room temperature is 12C) and supplementary T3 and T4 don't have any noticeable effect on how I feel unless I take way over the prescribed amount and feel rapid heartbeat.

    It was after mentioning the neuroinflammation/picolinic/Tsh link that the endocrinologist got really angry and ended the appointment.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    It could definitely be worth trying if you have Hashimoto's. My Endo is pretty mainstream but he felt there was enough evidence to back the claim that gluten free can help w/Hashi's (so I have been gluten free for approx four years, even though I do not have Celiac and am not allergic to gluten). There is no way to know what might have happened (thyroid-wise) if I had not gone gluten free but my TSH (and other thyroid numbers) remain normal at every check up with only a tiny dose of Armour Thyroid (7.5 mg each morning).
     
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  11. Invisible Woman

    Invisible Woman Senior Member

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    Thanks for that @Gingergrrl.

    My TSH & T4 levels have been very stable / good for the last decade or so.

    Mind you I don't eat a lot of wheat or grains anyway but it's certainly something to consider.

    Something else to give up! :rolleyes:
     

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