Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

A Hashimoto's primer

with 4 comments

I’ve just digested the thyroid chapter in my first year medical student endocrinology book.

From what I’ve read, it sounds quite probable that I have Hashimoto’s autoimmune thyroiditis. There are several reasons for having hypothyroidism:

  1. Primary hypothyroidism (caused by autoantibody attack as in Hashimoto’s or another autoimmune attack)
  2. Secondary hypothyroidism (caused by dysfunction of the pituitary gland)
  3. Tertiary hypothyroidism (caused by dysfunction of the hypothalamus)

By far the most common cause of hypothyroidism is autoimmune attack.

The reason I’m leaning towards Hashimoto’s (or possibly another kind of autoimmune thyroiditis) as a diagnosis, is because in secondary and tertiary hypothyroidism, the thyroid stimulating hormone (TSH) level is low. I have elevated TSH, and this is typically only found in autoimmune thyroiditis. In addition to that, I had a very negative reaction to iodine (swollen goiter), which is another indicator of autoimmune attack. I really wish I’d kept my mouth shut at the doctors’ and just let her prescribe me thyroxine instead of muddying the waters by asking for more tests and telling her my autoimmune-like symptoms.

I think I may have had this for some years. It seems to me that I’ve had relapses of symptoms during the winter months when my vitamin D levels are low, and prior to going failsafe I had strange bouts of worsening/receding symptoms that I later looked back on and put down to unknowable dietary factors. A low carbohydrate diet has been promoted by several people as being helpful for thyroid problems.

This is a quote from “Solved: The Riddle of Illness” by Stephen E. Langer MD and James F. Scheer. This book is a bit too altie in some parts for me these days and is a leftover I have lying around from my WAPF years, but I still think it talks a lot of sense.

What are HAIT’s classic symptoms?

1. Deep fatigue, often written off as chronic fatigue syndrome. Such patients go to sleep exhausted and wake up even more so. Their endurance is often low to nonexistent. Usually performing their day-to-day activities is beyond them. [So I was diagnosed with fibromyalgia when I was about thirteen years old. I’ve spent many years struggling to drag myself out of bed in the mornings, until I went failsafe.]

2. Depression. Patients exhaustion and inability to function normally bring on feelings of futility. In any acute onset of depression – especially in adult women – thyroiditis should be suspected and ruled out by proper testing for antibodies to the thyroid. Thyroiditis is frequently a common cause of postpartum depression. [I’d like to add that depression is actually an organic result of hypothyroidism rather than just a psychological one as implied here. I am currently quite weepy. Normally I’m quite a chipper person.]

3. Memory loss, characterised by severe problems with recent memory and ability to concentrate, is often a disaster for working adults and students. [I haven’t worked for several years now. I simply can’t cope with a work environment and I am unable to focus myself or remember to do various small tasks.]

4. Nervousness ranges from mild anxiety to full-blown panic attacks – some of which are true psychiatric emergencies. These are puzzling to HAIT patients and, often, to their physicians who, in desperation, usually recommend psychotherapy or prescribe powerful tranquilisers. Most patients with psychiatric symptoms brought on by thyroiditis tell me, “I have no reason I know of to feel this way. Something’s wrong physically, yet all my medical exams are normal.” (However, at this point, they haven’t had autoimmune antibodies to their thyroid gland checked.) [I am having panic attacks at night, and I don’t understand why.]

5. Allergies. [LOL – many sources also mention food intolerances and ‘multiple chemical sensitivity’]

6. Heartbeat irregularity and palpitations. [Had those for years, they started after AN INFECTION!]

7. Muscle and joint pains. [Fibromyalgia anyone?]

8. Sleep disturbances and insomnia. [This is quite severe at the moment, I’m getting about four hours sleep a night and then flaking out during the day.]

9. Reduced sex drive. [LOL.]

10. Menstrual problems. [My period has been too light for about nine months now, and my cycles and PMT symptoms have become irregular over the last three months or so.]

11. Suicidal tendences. [Perhaps if I don’t get a thyroxine prescription on Thursday!]

12. Digestive disorders. [I’ve always tended towards constipation but that’s largely gluten related, though I can get IBS from other food chemicals. Weirdly, my bowels are still okay at the moment, apart from some bouts of urgency!]

13. Headaches and ear pain. [For years, I get migraines from amines and cow’s milk, and have had otis externa since I was nineteen years old.]

14. Lumps in the throat. [You betcha I do!]

15. Difficulty swallowing. [That would be lump-related. I also have a very hoarse, gravelly voice now.]

[…]

HAIT is often a missed diagnosis because the routine thyroid hormone blood levels test used to rule out thyroid disease [the TSH level, which only begins to elevate as the disease advances] is frequently normal, and no additional testing is then performed.

[…]

If eiher parent of a patient is diagnosed with HAIT, I urge him or her to have other bloodline family members checked for antithyroid antibodies elevation, if they are suffering from symptoms mentioned above.”

Dr. Langer then goes on to describe how he is often able to wean his patients off thyroid medication with “a well-balanced diet of natural foods […] with accent on whole grains and fresh vegetables” designed to nourish the immune system and prevent autoimmune attack. LOL. As far as that part goes, I’m waaaay beyond a “natural diet” remedy.

It strikes me that I should have more faith in myself. Years ago I was convinced I had a thyroid problem, and I was convinced I had an autoimmune disease. I didn’t go to the doctor about my symptoms because after being diagnosed as a fibromyalgeur* (sic) as a teenager, I felt I was being treated as a hypochondriac whenever a doctor read my file, and that if it was my thyroid, they probably wouldn’t find anything wrong anyway, as my basal body temperature was fine. I have a lot of mistrust for doctors after the third generation pill and the resultant warfarin treatment.

When I got better on failsafe, I put my past theories down to hypochondria. Turns out I might have been right after all. I don’t think I will ever NOT be food intolerant (and, for the record, I don’t believe for an instant that hypothyroidism is THE ANSWER to food chemical intolerance), but I’m hoping that thyroxine might reduce some of my food-related symptoms to the point where I might be able to cautiously expand my diet (sans goitrogens of course).

*”Fibromyalgeur” is an insulting term used by medical bloggers to describe people they feel are faking a diffuse collection of symptoms. It’s often used in conjunction with “migraineur” and sometimes “back-paineur” to describe people who turn up at the ER of their local hospital seeking opiates. I am sure there are lots of people out there that do this, but it’s deeply harmful genuine fibromyalgia sufferers to describe them in this way. This pervasive prejudice still exists in the medical community, and is the reason that I specifically did not tell my new doctor that I have a history of fibromyalgia. I suspect had I done so, my symptoms could have been dismissed and the real problem would not have been uncovered [at least until I landed in hospital with another DVT caused by T4 deficiency related clotting].

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Written by alienrobotgirl

19 May, 2009 at 12:32 am

Posted in Thyroid

4 Responses

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  1. I too contemplated this diagnosis for myself when I was at the height of symptoms. I figured time would tell. Your long duration of symptoms does point toward HAIT, but the question is … what is causing the chronic attack by the immune system? I guess that’s the big question with all auto-immune diseases and I suspect the answer is likely to be complex and not easy to solve.

    I do find it interesting that my similar symptoms ended fairly quickly with the raw milk fast. It could just be coincidence, but raw milk does have immune modulating effects that could perhaps account for a normalization of the immune system. These effects are lost with pasteurized milk. Just some food for thought 🙂

    oz4caster

    19 May, 2009 at 3:52 am

  2. Hmmm i’m not too sure about this HAITs thing. I still have some of those symptoms regularly but they are neurotranmitter related as far as i’m aware. Sometimes I still have completely unrestful sleep and feel exhausted and weak. My moods are erratic and don’t make sense to my situation. I used to have panic attacks in the night (this is about the one thing that has subsided), still have a few skippy heartbeats/palpitations, really bad leg cramps (have them right now!). I wake up regularly in the night and I still have narcolepsy. IBS…

    But its just stress and being completely intolerant to modern life, LOL.

    Elena

    piratehyde

    22 May, 2009 at 8:23 pm

  3. Hey Elena,

    Try calcium for the leg cramps!

    alienrobotgirl

    22 May, 2009 at 11:24 pm

  4. Hi Bryan,

    I think what you had sounds like “thyroid storm”, a form of acute hyperthyroidism which can happen with some infections. Keep an eye on yourself, sometimes it can result in lower long term thyroid function.

    Calcium does have some interesting interactions with and modulatory effects on the thyroid. I think a fast would probably also help correct an overactive thyroid too!

    alienrobotgirl

    22 May, 2009 at 11:30 pm


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