Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Fibromyalgia invented six years after the TSH test

with 4 comments

This evening I was sweating and I discovered my body temperature had risen to 37.1°C (98.78°F) for the first time since records began! How funny. My body is so used to being cold, that when I hit a normal temperature I start to sweat. Alas, it was not to last, and soon fell back to its night time average of 36.3°C. My basal body temperature is still a fraction of a degree below the minimum normal range and appears to have stabilised there.

Apart from that, tired and foggy, and fell asleep for an hour on the sofa after taking the dog for a walk. I hate the foggy feeling. It really feels like part of your brain has gone to sleep and can’t wake up, everything is as slow as treacle, and you swim through life like a trout on a murky river bed. I don’t know how to describe this to someone who has never experienced it. Have you ever felt groggy during a really bad hangover? That’s how it feels. I don’t think doctors quite understand how devastating it can be to experience brain fog every day of your life for years and years. When thyroid patients talk about poor diagnosis and treatment taking away their lives, they aren’t joking. There’s nothing I can do to fix this feeling at the moment.

The neuropathic pain in my leg has returned en force today. I’ve been thinking about my upper back pain too, which is very easily provoked by food chemicals, and also by magnesium. I think something similar is happening in my back, with fluids building up and pressing on the nerves there. I’ve never been able to explain the back pain to myself, but I thought it must have something complex to do with pain signalling.

This has also made me wonder about fibromyalgia. For the last year or so, I’ve seen the occasional reemergence of the nasty, random hypersensitive skin patches typical of fibromyalgia. It has probably been going on for as long as the hitherto unnamed carpal tunnel syndrome symptoms. The sensitive skin patches usually occur on my outer arms. I wonder if it is possible that they are also caused by fluid build up pressing on nerves?

At teatime, I actually managed to become irritated by the barking dog, the blaring radio, and my partner clattering crockery. Everything was too loud. This is the first time I’ve experienced irritability in weeks, and I sustained irritation for a good couple of minutes. Not sure if that’s a positive thing. I rather took my anger-ectomy as a blessing, as in recent years I’ve experienced far too much irritability.

I’m forgetful, so if I meander or repeat myself, apologies in advance. I can’t actually play kakuro at the moment because I can’t keep enough numbers in my head. I haven’t been able to work on either my writing or on my computer programming for several weeks. I am so glad my partner is here to support me, or I would be destitute.

Hypothyroid patients generally have high cholesterol levels. Mine is somewhere between 6.5-7.8mmol/l (250-300mg/dl). My mum has high cholesterol levels, and has been prescribed eeevil statins for them. I don’t think the doc ever checked her thyroid status. I took a test last summer when I learned my mum had high cholesterol. It was equally as high back then. Did you know hypothyroid patients were at a much higher risk of heart disease? Why blame cholesterol when there is such an obvious correlation with hypothyroidism?

Apparently hypothyroid patients tend to have high levels of homocysteine, indicative of impaired methylation. They also tend to be low on B12, possibly due to the poor function of intrinsic factor, which is designed to absorb B12 from the gut. This explains a lot.

I read an interesting article by Dr David Derry, a retired Canadian thyroid doctor, regarding the uselessness of the TSH test. It contains a devastating quote:

Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions.

Before doctors started to use the TSH test, they relied on patient symptoms of hypothyroidism to diagnose and treat the disease. Now they rely on a test that doesn’t correlate with patient’s symptom intensity. I am becoming quite firmly convinced that fibromyalgia and chronic fatigue syndrome are undiagnosed hypothyroidism, created by the gap between symptom reality and second-rate endocrinology.

Really, this is as bad as the “treatment” of diabetes with a low fat, high carbohydrate diet.

Why is endocrinology such a poorly understood area of medicine? Are endocrinologists stupid?

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Written by alienrobotgirl

27 May, 2009 at 1:17 am

Posted in Thyroid

4 Responses

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  1. I understand your state of mind all too well. Brain fog can be terribly pernicious and seemingly unrelenting. It feels as if your brain is going on strike. When you’re in this state of cognitive impairment, you become exceedingly vulnerable. And, unfortunately, you become an easy target for charlatans and the purveyors of false hope.

    However, even during the worst of times, we are sometimes fortunate enough to have precious moments of mental clarity, and a willpower that helps sustain us. Since you began your journey of self-discovery, you’ve made some very tangible progress, which can be attributed to your refusal to relent.

    Presently, you’re only suffering a minor setback, and given your tireless desire for the normalcy that so many take for granted, I’m positive that you’ll triumph in the end. It just takes time. Even as troubled as the practice of endocrinology has become, you’re bound to find a sympathetic physician willing to employ an unconventional (but supported by empiricism) treatment program.

    I imagine you’ve already searched the PubMed database for further evidence of the thyroid/mood disorder connection. But, in any case, I decided to post a hyperlink to recent study that examined the mood stabilizing effect of triiodothyronine (T3) on a large group of subjects with treatment resistant bipolar disorder. Significantly, a high percentage of the subjects responded favorably to the treatment. Since I discovered that my T3 levels are borderline low, this is definitely a treatment option that I’ll explore.

    http://www.ncbi.nlm.nih.gov/pubmed/19215985?ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

    Anyway, tomorrow is another day.

    beroul82

    27 May, 2009 at 4:14 am

  2. I just remembered this blog. You might enjoy it. http://www.corepsychblog.com/

    Doctors frequently miss the hypothyroid-cholesterol connection. They are programmed to response to high cholesterol with a statin and not even curious why it might be going up, just that it needs to come down with a drug. I strongly suspect my sister and maybe our mother (also high cholesterol and on statins for many, many years) are hypothyroid, but they both insist their doctors checked them out and said no….

    About 12 years ago my sister had a classic cholesterol skin rash @ 3 mos post-partum with a total cholesterol that was off the chart >600mg/mL, I think. She was 33 yo, but they put her on a statin and made her stop breastfeeding. She was a wreck for a while, eventually was able to talk her doctor into lowering and then stopping the statin. She functions ok now, though it was a long struggle with some lingering issues that I think are connected, but she says not (you know, the doctor already checked and he has the medical license, not me). This was long before my hypothyroidism diagnosis. There are too many other classic hypothyroid and gluten sensitive symptoms to not investigate fully, IMO.

    goingagainstthegrain

    27 May, 2009 at 5:48 am

  3. brain fog! i used the same term to try to explain what it was like living with high sugar levels. yes, you do process information like during bad hangover, so i guess it is similar, and for your sake i am sorry to hear that.

    i have been able to reclaim my mind (thank you God!) after being shown our ENTIRE MEDICAL SYSTEM is LYING about diabetes, and a very low carb diet IS effective for its treatment. and not the drugs!

    i used to trust doctors and think people like you were goofs. now, i am a goof. survival necessitated it.

    i look forward to reading your blog.

    J Gunn

    29 May, 2009 at 11:07 pm

  4. I feel for you J Gunn.

    I’m a great fan of Dr Bernstein. The oldest living T1 diabetic in the world just can’t be wrong.

    alienrobotgirl

    30 May, 2009 at 2:10 am


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