Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis


with 5 comments

I’ve flipped over from being Miss Adrenaline 2009 to being Miss Sloth 2009. A couple of weeks ago, I was lucky if I could manage four hours sleep at night. I think this was because my adrenal glands were pumping out huge amounts of steroids to try to keep me stable. I was visibly shaking for some of the time, and internally trembling for the rest. I kept having hypnic jerks when I tried to sleep, little tiny seizure-like events that bruised my brain and woke me back up. I also had sleep apnea and some serious carpal-tunnel-of-the-leg-syndrome, none of which aided sleep. Those symptoms have now receded, thank heaven.

For the last two or three days I’ve gone into massive sleep mode, doing marathon ten or twelve hour sleeps, and it’s been taking me a long time to wake up when I eventually come around. Today I had brain fog and a very sluggish brain all day, until my partner took me out to a Japanese restaurant this evening and I got me a bit of MSG. It’s bizarre. When I’m in groggy-sleepy mode, a bit of glutamate always restores some of my higher brain function (albeit, making me somewhat hyperactive and full of gabble). When I’m in normal-mode, glutamate makes me spaced out and autistic.

Today I stuck all my body temperature readings in Excel and turned them into a graph. I’m going to be “one of those patients” and take it to the doctor with me when I return next week to battle out my treatment plan with her, and try to get a referral to the good Dr S. I’m still in two minds about whether to mention the dreaded f-word (fibromyalgia, ssshh!), or whether just to give her a simplified version of the last five or six years (I got subacute thyroiditis, it buggered my thyroid,  my Sluggish Cognitive Tempo became so bad that I had to give up work, I’ve been trying to deal with it ever since, the last doc sent me away with a flea in my ear and never ran any tests).

The graph confirmed to me something that has been worrying me, which is that after starting the thyroxine, my basal body temperature rose quite quickly from 35.5°C to an average of 36.2°C, then hit the normal temperature range for one day only, then declined again to a fairly consistent 35.8°C. A disappointing total rise of 0.3°C. I have noticed an increase in symptoms again since the temperature fell back down, in fact I think I’m starting to hear very faint fly buzzing and phone ringing type noises again since last night, probably my brain trying to make meaningful sound from the tinnitus.

Being a perennial worrier, I’m absolutely petrified that my next blood test will come back in the normal range, because TSH is apparently quite sensitive to thyroxine treatment. I’m paranoid, I know, but at this early stage, with a rather sceptical doctor who only wanted to give me a one month trial of thyroxine, I’m liable to be given the bum’s rush out of her office if I don’t “pass” or rather fail (lol), my blood tests. I feel that this temporary rise in body temperature followed by a depression in body temperature along with “too hot” sensations when actually I’m still too cold, suggests that my body is in homeostasis and is so used to being cold that it’s digging in its heels about warming up. Body temperature and homeostasis are regulated by the hypothalamus, which is apparently too smart for its own good and needs a bit of a slap. It seems as though my body may have responded by lowering its own T4 production by lowering TSH. If it comes to it, I think I will have to explain this to my doc whilst trying not to sound nuts.

On a positive note, fleas in ears and bums rushes aside, I received a small order of Armour thyroid from an international pharmacy today. This gives me a great sense of personal victory and empowerment. Being on the verge of auditory hallucinations is simply not good enough, and if the worst comes to the worst, I damn well won’t stand for having my treatment withdrawn and I will start treating myself. I’m not going to go the way of my poor schizophrenic friend. They’ll have to lock me up to stop me.

I suppose in a few months time when I’m feeling better, I can tell people, “oh yeah, it got so bad I started hallucinating,” and it will earn me a certain amount of notoriety and je ne sais quoi, and they will look at me like I came back from hell. Last night I was thinking about putting pink streaks in my hair and getting a tattoo. I missed out on all that when I was a kid, and people do still say I look about twelve, so I might get away with it. I was thinking the tattoo can be my war wound, and it should say something like “twenty years too many,” so when people ask what it means, I can turn around and say “that’s the number of years I was misdiagnosed with fibromyalgia” like a real martyr. I guess that despite the twelve hour sleeps, I might be a teeny bit manic right now.

Actually, psychologically, I’ve started to calm down. I’ve gone through the shock, denial, anger, and I guess I’m at the bargaining stage. Hopefully if I get my bargain with the devil doc, I’ll skip the depression stage. I’ve been feeling very positive. I’m really looking forward to the future. I keep imagining all the things I’m going to do when I get better. I’ll be able to go on holiday and go out for restaurant meals and drink cappuccinos again. I may even go out and get involved in my local writer’s group and make some new friends, something I was simply too terrified to do last year. I think my confidence is starting to come back. I’m not expecting to turn into supergirl or anything, but, you know, it will be nice to have a life.

Having calmed down, I’m able to get back to writing my novel, and that’s what I’ve been doing. Technically, I’ve finished the first draft, so I’m just into revision now. One needs a good memory for revision, in order to spot any mistakes and inconsistencies. So I might have to revise it again in a couple of months time when I feel less like I have Alzheimer’s disease. I superimpose a kind of unconscious “method writing” (that’s like method acting but for novel writers) on my internal voice, and I tend to take on the traits of my lead character. So if I sound a little quirky now and then, don’t get worried about it, it’s because I am.


Written by alienrobotgirl

4 June, 2009 at 12:17 am

Posted in Thyroid

5 Responses

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  1. At the risk of appearing to be some sort of supplement junkie, I’ll offer another recommendation. Since it’s possible that your serotonin levels have been depleted from the diet you adopted, I think you might benefit from using tryptophan. But, you should some exercise caution, since elevated levels of serotonin in the bloodstream could lead to some pretty nasty consequences, and because a heightened intake might provoke a manic episode. To remedy the latter problem, I’ve been thinking about asking my Psychiatrist (who is a pretty open minded fellow) to prescribe Carbidopa, which would prevent the tryptophan from being metabolized in the liver.

    Let me stress again, I’m not trying to attribute your symptoms to depression, but with your thyroid difficulties, your symptoms are myriad, so it’s difficult to decide on a place to start. So, I’m starting with the symptoms that I’m more familiar with treating. And, based on my experience, I think the tryptophan might alleviate some of your mood/mental symptoms. Otherwise, the thyroxine should be of some benefit. But for the love of God, stay away from the glutamate. I mean, given your likely diagnosis, the benefits are far outweighed by the consequences. If you’re desperate for the stimulating effect of glutamate, glycine or glutamine would be better options.

    On another note, I also had a quasi-seizure like episode (lasting seven seconds) while I was trying to fall asleep. Do you have any explanation? I’m wondering if it was precipitated by GAD, depleted dopamine levels, or maybe an underlying case of Tourette’s that was activated by some sort of stimuli. If not, do you think it’s thyroid related?

    Anyway, keep focusing on the likelihood of recovery, and good luck.


    4 June, 2009 at 3:37 am

  2. But, it didn’t initially occur to me that you’re hyper sensitive to amines, so ignore my advice. Unless you’re inclined to order some Carbidopa, or use the same channel to try a small dose of a serotonergic drug, I have no other advice but wait and see. That, and stay away from the glutamate.

    Wow, that was somewhat of a wasted effort.


    4 June, 2009 at 3:54 am

  3. Hi Scott

    You must not worry when I show signs of developing a personality. Everything is good.

    Sometimes I DO go low on glutamate, and a very small amount of natural dietary glutamate wakes up my brain. This is something I have long observed, and something I have never done deliberately, due to the dire consequences of ingesting too much.

    Much as I appreciate your concern, you are right, there is not really much point in suggesting supplements or drugs for me to try. My moods, which are mild, change far too rapidly for that. There are also the consequences of drugs interfering with thyroid treatment, as many do. I would rather observe in a controlled way the changes I am experiencing, without throwing in additional factors which would confuse the results.

    The only thing that will fix me is adequate thyroxine treatment. It will take several months before I stabilise.


    4 June, 2009 at 12:51 pm

  4. Seizures can be thyroid related, since thyroid hormone deficiency precipitates neurotransmitter imbalance.

    Usually the cause is high glutamate and/or disturbed ion channels, though melatonin deficiency and serotonin excess also play a role in nocturnal seizures.

    My partner has epilepsy, and his seizure threshold is reduced by calcium supplements and some methylation supplements (folate, B12).

    Without knowing what you are taking at the moment, I can’t say specifically, though I would suggest you stop taking it!


    4 June, 2009 at 12:56 pm

  5. Well, I’m in agreement. You should address what you believe to be the most pressing and likely source of your symptoms. Especially since the acquisition of thyroxine might prove to be difficult if there is any positive change in your thyroid hormone levels. In the coming months, I believe that your theory about the correlation between your thyroid hormone levels and your symptoms is likely to be validated.

    Although this information is probably inconsequential, I should add that I also take a mixed tocopherol formula of Vitamin E: 900 mg of mixed tocopherols, divided into three doses.

    Again, good luck.


    4 June, 2009 at 5:39 pm

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