Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Diagnose me

with 10 comments

I’ve gone through a rapid decline in health over the last couple of months. These are the symptoms I’ve been having:

  • Tinnitus
  • Weakness
  • Trembling
  • Dizziness
  • Feeling faint
  • Short of breath
  • Sleepiness mixed with insomnia
  • Some twitching, myoclonus, and apparent sleep apnea
  • Complete loss of appetite
  • Can feel heart beat, pounding, palpitations
  • Pain in my left arm like I’m being squeezed with a blood pressure cuff
  • Feels like my veins are being pulled
  • My old DVT leg has been hurting A LOT, and I’ve been worried about another clot
  • Tingling extremities
  • Headaches (non-migraine)
  • My lips and the inside of my mouth are very pale

These symptoms are absolutely not related to food chemical intolerance. There is no pattern connecting them to food. I haven’t been taking any stupid supplements. My vitamin and mineral intake is perfectly adequate, probably better than most people’s.

I went through a loss of appetite back some time in February. Since then, I’ve been dieting, simply because it’s amazing for me to lose my appetite, and to be able to cut calories without feeling out of sorts. I’ve actually lost some weight, about eight pounds, though not nearly as much as I should have for the length of time I’ve been dieting. But what’s new? I’ve had that problem for years.

In all other respects, I’ve felt fantastic. I think increasing the calcium in my diet has made a big difference to my ability to concentrate and get work done, as well as to my general alertness and energy, and ability to get up in the mornings. In the last three months I’ve actually embarked on a big programming project, and I’ve finished the first draft of my novel. This is nothing short of miraculous to me, since I’ve been a mental f*ckwit for several years now, unable to focus and knuckle down on work due to my all-consuming attention deficit disorder. If I had a job, I surely would have either been sacked or had a nervous breakdown by now. It’s a good job my partner doesn’t mind supporting me.

After having bouts of weakness (which I blamed on low blood sugar and dieting), and increasing pains in my DVT leg (which I blamed on sitting around too much writing my novel) for perhaps a month or six weeks, I went through a steep descent three weeks ago now.

I felt like I was dying. My heart pounded constantly day and night for three days, I was very short of breath, I had hot and cold flashes, the most awful headache at the back of my neck and running over the top of my head, bradycardia (slow heart beat), and blood pressure even lower than usual, with a big variation between my systolic and diastolic readings. I was chronically weak and shaky. I really wondered whether I had screwed up my electrolyte balance. I couldn’t sleep because of my heart beat and strange breathing. I woke up on the morning of the 1st of May shaking and shivering, with a body temperature of 35.5 degrees Celsius.

So I went to the doctors. I didn’t know whether I might have an infection, or whether there might be something terribly and fundamentally wrong. I arrived in the middle of the Swine flu farce, and the locum GP I saw felt my pulse and told me I was “just anxious.” Presumably she had already seen ten people that morning who thought they were dying of Swine flu.

Now, I know my body, and being someone who suffers from chronic anxiety, I know full well what symptoms it causes my body. I went away feeling insulted, and trying to convince myself that maybe I had just a strange infection, or some really, really severe PMS. I started my period the same day. I couldn’t believe it. I’d never had PMT symptoms like this before. When I looked them up online, they looked a lot like oestrogen deficiency. My symptoms had been so severe I wondered whether I was going through the menopause! My mum started to go through the menopause when she was 32 years old. I’m now 33. My cycle and my PMS symptoms have been somewhat erratic over the last few months, but I haven’t really been paying attention.

So my symptoms seemed to get better for about a week. I still had them, but they were tolerable. But they should have got better by then. I started googling my symptoms and went from being convinced that I had a hormonal imbalance, to being convinced that I was anaemic, when it struck me last week how incredibly pale my lips and the inside of my mouth were.

So I went to the doctor again. This time, purely by luck, I got a GOOD doctor. I offered her my theory. I listed my symptoms. She took some of my precious blood and sent off for a big workup. Meanwhile, I started necking therapeutic dose iron tablets in the hopes that they would make me better. I blamed myself. I felt sure I had screwed up my diet. My general nutrition is very good, but iron is one of the very few nutrients that my diet is too low in.

The doctor rang me with the blood test results a couple of days later.

My serum ferritin is 142 μg/l. This is actually a remarkably good ferritin level for a pre-menopausal woman. The ferritin reference range is considered to be anywhere between 6-284 μg/l, with pre-menopausal women typically falling in the range of 6-81 μg/l. My haemoglobin level is 13.2 g/dl. The haemoglobin reference range for women is 11.5-16.0 g/dl. I was not anaemic.

“There is one test result that has come back out of range,” she said.

If anyone is still reading this blog, I wonder if you’d like to guess what it was?

Edit: view the answer here!


Written by alienrobotgirl

18 May, 2009 at 1:26 am

Posted in Dr House

10 Responses

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  1. ARG, sorry to hear you’re not feeling well ! I can sympathize as I had a couple of bouts with some similar symptoms back in March. My symptoms were loss of appetite, feeling weak and tired, but with difficulty sleeping, and the most noticeable symptom was a very high frequency of heart palpitations. I also felt feverish but didn’t take my temperature. My heart rate was above normal at around 70-75 bpm, compared to the usual 55-60 bpm. My blood pressure was also well above normal near 150/90. The frequent heart palpitations were scary, but these were the exact same symptoms I had about five years ago, also in late spring, when I was 45 pounds heavier and before I changed my diet. At that time, I called my doctor and he told me to go to the emergency medical room at the hospital. So I did and they said I was getting lots of PACs and PVCs (premature heart contractions either atrial or ventrical but not typically serious) and my temperature was 100F, bp 200/100, and heart rate around 90-100 bpm compared to my normal 80-90 bpm back in those days. They put me on some kind of drug to lower blood pressure which I didn’t like at all (made me groggy) but took for several weeks. I gradually got over the symptoms over several weeks and quit the bp drug back then.

    In looking back, I suspect I had some kind of infection that triggered hyperthyroid like symptoms, both five years ago and more recently back in March. This time, I decided to try a raw milk fast the first time it happened in March and the symptoms were gone in about 24 hours. I had a repeat about a week later and did the same. It again went away in about 24 hours and has not happened again since. I get about 2,000 IU of vitamin D per day from CLO, but that may not have been enough to prevent this infection, although I have not had any kind of cold symptoms for over a year now, which is a new all-time record for me. I haven’t bothered to have my blood levels checked for D.

    Your symptoms are somewhat different than what I had, but I also suspect some kind of infection and some of your symptoms are hyperthyroidish. Are you getting plenty of vitamins D and A? The late spring is typically the time of lowest vitamin D levels for most people. If you have access to raw goat’s milk, give the milk fast a try. I can’t be sure that’s what snapped me out of it, but I know that’s what I will do if it happens again 🙂


    18 May, 2009 at 2:53 am

  2. Oooh, it’s like a House episode. I suspect lead poisoning.

    Hope you’re in good form again soon.


    18 May, 2009 at 3:53 am

  3. Well, perhaps a severe folate deficiency? If that is indeed the case, you certainly have my sympathy.


    18 May, 2009 at 4:34 am

  4. Of course I’m still reading.

    I have a guess, but it is based on what you said on Facebook!


    18 May, 2009 at 6:36 am

  5. […] Posted in Personal Diary by Alien Robot Girl on 18 May 2009 To continue a little further from the last post without telling you what’s wrong with me, I’ll give you a few more of my whacky […]

  6. I have a real crush on Dr House! 😀


    18 May, 2009 at 4:43 pm

  7. I actually have awful reactions to folate! I don’t really tolerate methylation nutrients.


    18 May, 2009 at 4:45 pm

  8. LOL 😀


    18 May, 2009 at 4:45 pm

  9. Hi Bryan! You were the closest guess 🙂


    18 May, 2009 at 4:47 pm

  10. Hi ARG,
    I’m sorry to hear about the medical problems that have been plaguing you.

    A lot of your symptoms seem almost neurological (such is tingling, and tinnitus). What jumps to my mind is a potential vitamin deficiency, maybe the b vitamins.

    But it could be multiple things too.
    I agree with your diagnosis of hypothyroidism, a TSH of 6+ is actually quite high. See a modern thinking endo, you need thyroid hormone especially if your T4 is low. Copper is good for low T4, iodine can actually induce hypothyroidism. Try zinc as well. Zinc raises the enzymes that convert T4 to T3 but lowers T4 production; copper raises enzymes that make T4 and lowers the T3 converting enzyme. Also try a tyrosine supplement at the same time as taking iodine (if you are willing to risk it again).

    WHen my thyroid feels wonked I take tyrosine + iodine, always gives me an energy boost. But then again I am not hypothyroid, my TSH is 0.8. When my energy is very “start and stop” I need copper.


    18 May, 2009 at 9:25 pm

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