Hi everyone - I've found this forum and it is fabulous. Well done and thank you - and sorry for the long post.
I've been dealing with so-called subclinical hypothyroidism for more than three years. It runs in my family - mum, sister and maternal grandmother all diagnosed and on full meds for years. They live in the US so obviously they're not having a problem getting treatment.
I've had the full range of symptoms: severe fatigue and energy 'crashes', thundering palpitations, massive weight gain, scary hair loss, freezing hands and feet. In the past few months I've developed a huge swollen tongue - it's horrible. I have trouble swallowing and seem to have continual lump in my throat. The problem now is that the swollen tongue and constricted throat have contributed to a severe case of sleep apnoea - my ENT says I gasp for breath 42 times an hour so can never get a proper nights rest.
Absolutely desperate and sleep deprived I went back to my GP. I showed her two studies I'd printed out which point to a clear causal relationship between low thyroid function and apnoea. She agreed to order another round of tests but pointed out that as my last results in November 2015 showed a TSH of 3.99 and T4 of 11, it was unlikely I'd be treated. Despite the horrific symptoms.
My TSH has ranged from 4.67 to 3.67 over the past three years - in most other countries in Europe I would have been given medication straightaway and I'm sure this sorry tale would not have ended with a sleep doctor trying to force me into a CPAP mask (that's a story for another forum).
Does anyone think I should just give up on the NHS and travel to Germany or Sweden or Belgium where the range for a diagnosis is more sane? Would I then have to get prescriptions from there and forfeit my right to UK prescriptions forever? Would it anger the UK doctors so that I'd lose my chance to be treated here in future?
I'd go private in the UK but it doesn't seem like there are any doctors left here who are willing to prescribe inside the ridiculous 'normal' range enforced by the General Medical Council. If anyone has a name or two please send me a message.
Another thought - has anyone tried to use the EU rule on cross-border treatment to see a doctor in Europe and have it paid for by the NHS? It usually only applies where there's a long waiting list in the UK, but I'm wondering whether a test case could be made that our human rights are being denied when there is such a huge difference between countries in what's considered a 'normal' range.