Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The way forward

with 2 comments

It’s easy to say after the fact, but I wish I had been charting my basal body temperature properly. I have a handful of readings. They have reliably come back at 35.5°C (95.9°F). Which is rather cold. Today I came back from shopping with the sweats. This made me optimistic. I took my temperature, and it was a whopping 36°C (96.8°F). LOL. No wonder I’ve been struggling to breathe. I practically have hypothermia! Normal basal body temperature is 36.3-37.1°C or 97.3–98.8°F.

I took my first (tiny) dose of thyroxine last night. You’re supposed to take it first thing in the morning on an empty stomach, but because of the timings of getting hold of the prescription, my stomach wasn’t empty until bed time. Then I took my second dose first thing in the morning. I’m not really trying to double-up. Honest.

The tablet gives me a slightly swimmy feeling straight after taking it. Although it’s colour free, it contains acacia extract for unknown reasons. I suspect the swimmy feeling is from the acacia rather than the hormone, and I think the acacia might have aggravated my eczema. I fell asleep shortly after taking it, and had strange, extended, complex dreams about zombies. Fortunately I wasn’t frightened. No more taking them at bedtime though.

Apart from that, no significant change. Thyroid hormones do take a while to start working, at least 24-48 hours. I did wonder whether I felt a little bit warmer a couple of hours after taking it, though I might just be hyper-aware. I think my brain woke up a bit in the afternoon for a couple of hours, but that could be from walking around.

I’m still very emotional. Today I was walking down the street feeling like a freak, trying not to well up because there’s a chance I might get better. I’m quite buoyant now that I have my frustration with the diagnosis process under control. I seem to have an anger-ectomy at the moment. Normally I’d get annoyed or irritated, but I seem incapable of that, like I’m on a depressant drug. It’s very strange.

What has made me so positive is that I’ve spent the day rifling through the internet looking for thyroid-friendly doctors in the UK, and I have some contact details for private doctors who I’m sure will treat me correctly if things don’t go to plan with my GP. A significant percentage of subclinical hypothyroid patients have symptoms. Doctors are supposed to treat them if they have the symptoms hypothyrodism, which I do. Unfortunately they don’t always know what they’re doing and they’re reluctant to do that. My doctor is convinced that the tiny, almost placebo-sized quantity of thyroxine she has given me is “going to send me the other way” and make me hyperthyroid, because she thinks my TSH of 6.5 “isn’t that high”. A normal starting dose of thyroxine is at least 50mcg, and I’ve been given 25mcg. A normal full adult dose can be as much as 150mcg. So bring it on. We’ll find out next month when I go back for another blood test. If I can just get rid of the breathing problem, I can last that long.

The worst case scenario is that my repeat blood test comes back and I’m just inside the normal range, at which point she will stop the treatment and I’ll be back in her office a month later complaining that I can’t breathe again. It’s going to be tiresome waiting this one out, especially as I’m a perennial worrier prone to over-thinking everything. I’m going to start a symptom diary, to back up my case.

There are a couple of doctors in the UK who come highly recommended by the patient advocacy groups, one being Dr Sarah Myhill, a chronic fatigue specialist, and the other being Dr Gordon Skinner, a fiesty Scot. Both have been investigated by the GMC for assertively prescribing thyroxine, after complaints from GPs who didn’t want to treat their borderline hypothyroid patients who had symptoms. Dr Myhill was cleared of all charges, while Dr Skinner is still under some minor restrictions. Needless to say, they had hundreds of patients willing to testify in their defence! I may well be making an appointment with one of them. If I could get a long consult and explain all my issues with fibromyalgia and food intolerance to a real doctor, without being looked at like a candidate for the monkey farm, I will be very happy.

I was quite shocked when I realised how many people there are on the advocacy forums who were misdiagnosed with fibromyalgia or chronic fatigue syndrome, who later recovered with the aide of thyroid medication.

As a result, I’ve been on the phone to my Dad, querying him about the period of time during which my whole family were diagnosed with fibromyalgia. I’ll have to write a long post on this. My Dad is very forgetful, but he doesn’t think we were tested for thyroid problems. The doctors were more interested in looking for exotic infections we might have caught, like Lyme disease. He doesn’t think my Mum was tested for a thyroid problem when her hormones went haywire at the age of 32, after my sister was born. She was put on HRT, which can in fact, artificially raise thyroid hormones. Thyroid hormones do sometimes crash after pregnancy, which then has a knock-on effect on sex hormones. I wonder about this. My mum is disabled. She hardly eats anything, and she’s very overweight now. She’s always cold to the touch, very moody, and very slow thinking, which we’ve always blamed on brain damage from the aneurysm that disabled her. Yet sometimes she has these clear patches where she sounds like her old self again. Needless to say, my Dad will be watching my progress with interest.


Written by alienrobotgirl

21 May, 2009 at 12:01 am

Posted in Thyroid

2 Responses

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  1. Are you aware that some are theorizing that fibromyalgia might actually be severe Vit D deficiency?


    21 May, 2009 at 1:50 pm

  2. LOL. That makes a change from that Marshall Protocol crap people have been pedaling around the internet!

    I do need a lot of vitamin D. I really crave sunlight in the winter. Some people have genetic polymorphisms that make them resistant to vitamin D. However, the amount of time I spend in front of the UVB lamp and outside in the sun, I’m pretty sure that’s not the case for me!


    22 May, 2009 at 11:00 pm

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