Wheat from Chaff

This year is the tenth anniversary of me losing my hair.

It went like this: a coin-sized bald patch appeared on my scalp. I went to the doctor and he took some blood, and gave me steroid ointment which did nothing. More of my hair fell out and I started to feel pretty awful all the time with fatigue and ‘flu symptoms. Eventually when all of my hair had dropped out I went back to the doctor who said “we wrote to you, didn’t you get the letter?”

The tests had shown extremely high TSH levels in my blood – indicating an underactive thyroid. A massive dose of thyroxine and TSH levels went back to normal.

For a while I thought that was the end of it – it should have been the end of it.

A link between Alopecia and Thyroid disease is suspected, but isn’t fully understood.

Most doctors shrug their shoulders and mutter something about the relationship between different autoimmune diseases.

My hair hasn’t come back – it still grows, but it’s usually so brittle that the follicles snap off as soon as they get outside the skin, so I’m completely bald. (On the upside I shave about twice a year).

About a year ago my nails also began dropping out. That prompted more trips to specialists.

They spotted the horribly itchy rash I had. Since the hair, nail and skin clinic only opened once a month the repeat visits went over the course of 4 months, and on each visit I had to describe my symptoms again, strip and be prodded by a different doctor.

Unsurprisingly, that consultation ended shrug of the shoulders and muttering about it being all part of the same, nondescript autoimmune condition affecting my hair and nails.

The rash became unbearable, responding to changes in temperature, and could not be managed by emollient cream. So I started researching links between dermatitis and thyroid condition.

I found a couple of interesting things. Firstly, dermatitis herpeteformis can be linked to thyroid disease.

Secondly, DH is treated by a lifelong gluten-free diet.

Finally, there may be a gluten-thyroid link.

The dermatology clinic had tested for celiac disease – something that both worried and angered me. Was I going to need a gut biopsy? And if thyroid patients could be at risk from developing other autoimmune diseases, why hadn’t I been screened years ago?

The tests came back negative. But as Kresser mentions the celiac tests aren’t reliable. Furthermore, DH sufferers may present with less intestinal damage than celiacs, though I appear to have no real symptoms there anyway.

But a gluten free diet wasn’t going to kill me, and if it made a difference to my skin it would be worth it.

Gluten free – 1 week in

I’ve been off gluten for a week, and all I can say is I feel different. Most certainly better than I have been, though breaking it down isn’t easy.

I have to be careful that I’m not mistaking the sensation for something else. Last weekend I came back from a 2 week business trip in the US where I travelled through 11 states, so I have been under a fair amount of stress. There is a link between thyroid function and cortisol (and also insulin, which may explain my difficulty to lose weight despite an active lifestyle and calorie control).

But there are specific symptoms that have improved. My skin has cleared up a lot. My digestion has changed, mostly improved. But the two I notice the most are that the insomnia has suddenly gone, and that I am pain free.

Being pain free is a weird sensation, but I know what it feels like because I felt it the first day I took thyroxine. The pain was such a low level I could never describe it as a symptom to the doctor. It’s sort of like recognising an absence of car noise in the country.

The insomnia was something I thought unrelated – just due to over-indulging in booze. But there are other factors that present, like not regularly getting up for a pee, and losing the acid reflux. But insomnia is supposedly a symptom of over-active thyroid.

And according to science I shouldn’t be feeling these changes in one week. Antibodies can persist in the body for up to six months, giving rise to the processes that lead to symptoms. But ten years ago my doctor told me that it might take a few weeks for me to feel different on thyroxine – and that was instantaneous.

When I was in the states I dropped in on friends in Baltimore. I slept on their sofa bed which was a good deal less comfy than the hotels I’d stayed in previously, but I slept the best I had all week. They eat gluten free, so I ate gluten free. Was my better quality sleep influenced by that, or was it just because I’d managed to unwind after a week of travel?

I want to be charitable to my doctors. The GPs I can sort of forgive – their job is to spot something they can’t explain immediately and send the patient off to a specialist. But I know enough of experimental method that most of the doctors I have seen lack rigour. The stock response is to wait and see, and come back if it gets worse. Which is fine if the patient is self-aware to realise that their symptoms aren’t getting better, or if they have clear indicators (such as the level 2 rupture in my calf muscle that the doctor said was probably just a strain, and would get better in a week – that took 4 months to heal). You feel a fool going back to the doctor repeatedly for nondescript symptoms.

I’ve also been arrogantly told that my metabolism has no part to play in my being overweight, since my TSH levels are normal. I should be able to shift my fat, and therefore I’m probably lying about my calorie intake or the amount of exercise I do. Never mind the food diary, the 100 miles of riding per week and the failure to shift more than a kilo over two months.

If celiac disease is a potential feature in thyroid patients, why was I not screened in 2002? And if Dermatitis Herpeteformis is symptom of gluten intolerance, why wasn’t I biopsied?

So much of my treatment has been focused on managing the condition rather than treating the root cause, like anti-fungal shampoo where no evidence of fungal infection presented.

I don’t think I will ever get a definitive root cause to my condition, and if gluten is the cause then I’d have to start eating it again to provoke the symptoms so they can be observed. I’ll settle for feeling better than I have in years.

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  • I think part of the problem is that hospitals are not financially incentivized to cure patients with chronic conditions – they are incentivized to take the referral from the GP, make some sort of recommendation as quickly as possible, and get the patient away and off the waiting list.

    Of course individual doctors do want to treat people effectively, I’m not suggesting otherwise. But time pressure and management pressure on them are so great that they have to make compromises, consciously or unconsciously.

    Another factor of course is that some doctors are insufficiently experienced, or insufficiently on top of the details of the field, to come up with the right answer during a brief consultation. And some doctors are just not very good at diagnosis.

    • Agree with all of that.

      I believe the GP is probably under pressure to come up with an answer, any answer, when dealing with a patient. Which is why they will go for those ailments and treatments they are familiar with, because they will capture the majority of cases. Bad luck for the minority of us that fall outside their box, but if they’re keeping the majority of people alive with a decent quality of life then that’s what they should be doing.