Here I sit, near the end of a long, painful (literally and figuratively), drawn-out search for answers.
12 years ago, I went for my first thyroid test: I was feeling tired all the time, and having previously been the sort of person to forgo lunch in favour of 45 straight minutes charging around a basketball court, this was not normal.
The result: "normal". You'll see me put that words in quote marks a lot.
Fast forward to around 2007; another test. "Normal". Then to April, 2011; "Normal". Only I got the figures for that one; and that is where 'normal' ends. For a healthy person, the T4 (what the thyroid produces) and the T3 (what the adrenal glands turn the T4 into, so the body can use it) should both be halfway or above in the reference range. Both of mine were in the bottom quarter. But the NHS wouldn't touch it; they were in range therefore, no matter what symptoms I presented (and I presented an A4, two-column list), I was healthy.
My arse.
Fast forward a few months to August 2011; barrage of tests following my demanding a referral. By now we are 11 years since that tiredness first started; by now I am freezing cold all the time (even in Tenerife, in the sun, in 2003), I have joint and muscle pains, especially in my hips, knees and feet; oh, but the feet were awful.
I succeed in getting my thyroid re-tested, but the endocrinologist (from here onwards, the 'endo') refused to test my antibodies, as the GP who referred had done - my results were again "normal" so it couldn't possibly be my thyroid. Again, they were bottom of the range - not normal, not healthy. A vitamin D deficiency is identified, and not treated properly - my then GP (as the referring one had left) refused to prescribe to the endo's suggestions as she felt it too much. Her prescription was pathetically weak, and did nothing; it was only through supplementing myself to the dose he'd suggested that my levels were only just reaching the bottom of the range, 3 months later.
But I digress. She also wouldn't touch my thyroid or test for antibodies. Finances forced me to change endo to one closer to home - by, she is a nasty one. Obnoxious, unpleasant, totally closed-minded and, like the rest of them, barren of knowledge on thyroid function, testing and diagnosis.
She also refused to test my antibodies - again stating that as my levels are "normal", it couldn't possibly be that. But she didn't suggest anything it could be.
That brings me to now: I'm due to see her again in 3 weeks. She's ordered only 4 tests, 2 of those are now at a healthy level thanks to my own unaided efforts, and I am now addressing the other. She has made no communication with me; no annotation on those tests; no attempt to suggest any possible reason for my symptoms.
By now, I am suffering with crippling foot pains, the fatigue is awful (and no fun with 8 dogs to walk, of course), and although my brain fog has improved to some extent following my bumping up my "fine" level of vitamin B12 (a note: 389 is NOT fine; levels should be 800+ for good health. Mine was 755 in November, so nearly there), it's still a massive problem for me. I feel the cold a little less, again since supplementing - because my body is now able to use what T3 is being made. But it's still not healthy and certainly not "normal".
So, 11 days ago, I ordered a private thyroid screen - including antibodies.
The result was exactly as I expected: I have Hashimoto's thyroiditis. That is - autoimmune thyroid disease. That thing it couldn't possibly be, because everything else is "normal". I have news for the undereducated NHS - antibodies muck everything up. They skew results, they cause myraid of symptoms long ebfore they start to effect the numbers on your precious lab results. For me, this time around, they have cause a T3 spike - a rise in the T3 level where dead or damaged cells have been dumped into my bloodstream from the thyroid.
11 days to get a diagnosis. After 12 YEARS. It really is shameful; and they can't blame ignorance - all the knowledge and evidence is there, ready and waiting, and has been for decades.
The only things left to sort now are a zinc deficiency, mild but one of the important factors for thyroid hormone usage; and a possible iodine deficiency identified by the private lab.
To that end, I've been offered free testing - before, during, and after supplementation - by another private UK lab which I have gleefully accepted, as I am reliably informed that getting my iodine levels checked on the NHS is going to be basically impossible.
I suppose my point in writing all of this is to encourage people to look after themselves - don't rely on someone else; if you think there is something wrong, follow your instincts. Don't accept a GP who tells you that you are fine and dandy because numbers on a page say you should be - even the concept of that method of diagnosis and treatment for ANY condition is moronic at best.
And ultimately, if you just don't get anywhere - sort it yourself. I know full well, before I go back, that the endo my case is with at the moment will not accept my private results; and I'll be stunned if she even wants to retest me for antibodies to get a result through the NHS labs. I know damn well she'll refuse to give me any kind of thyroid treatment - after all, my results are "normal" so I don't need it!
My arse.
No, the reality is one of self-treatment from here on in: just as with all the supplements, I will be buying my thyroid meds myself from abroad (no, I don't need a prescription; yes, it is safe - Remy's meds now come from Cyprus - and yes, it is legal) and treating myself, according to my symptoms, not numbers. The beauty of that is that it will allow me to return to optimal health - my body will tell me if I'm not taking enough, or if I'm taking too much; our bodies are really very good at doing that. They've been doing it for millions of years.
I have more than enough support to get me through it - like me, there are thousands (if not more) of people in the UK, the US, Europe, Asia... well, basically everywhere, who have been let down by their health authorities and have been forced into self diagnosis and treatment. And they are all doing splendidly!
So, a few final words for this post:
NHS, get your backsides in gear. Learn. And do it right. You're allowed to - the General Medical Council said as much in November, when one Dr Gordon Skinner had all charges against him dropped, for daring to treat his patients by symptoms, and with the medications that suited THEM (not just thyroxine for everyone as the NHS believes is fine - it's not for at least 15% of patients, if not more). You can do it.
And to everyone else, being let down by them in the meantime, and who will be let down until they sort themselves out - be brave. Be strong, get reading and educate yourselves, and get your health back. I know you're tired, I know your minds are full of fog and treacle. But, nevertheless - you can do it.
No comments:
Post a Comment