Thursday, 30 August 2012

The story so far...

Well, I've been a rubbish blogger! I've been in a bit of a hypo hole and the thought of blogging, or really doing anything much, has been kind of overwhelming. Such are the fluctuations of this illness. But I'm now much more used to things than I was a few years ago!

I recently convinced my doctor to prescribe me T3 in combination with T4 (following a year-and-a-half slog with T4) because I'm still pretty fatigued, breathless and brain-fogged (and that's just the tip of the fun thyroid ice-berg). I was diagnosed in 2008 after I mentioned to a doctor how I always felt tired and low-mooded - a TSH test was done and ta-da - I was officially hypothyroid.

I then promptly forgot all about my diagnosis.

I was told that as I didn't feel too bad I wouldn't need treatment. Thyroid problems? No biggie. I was casually shrugged out of the office. Blissfully ignorant, I shrugged too and probably just assumed it was normal to feel constantly tired. Heh, it was my first year of student life after all. Wind forward two years of long lie-ins, missed lectures, colds, infections and bouts of tonsillitis to November 2010, when I crashed. Which is what was obviously going to happen. Because, had any doctor bothered to run an antibodies test, they would have discovered that I had Hashimoto's thyroiditis, which is autoimmune. Which is progressive. I should have been on treatment from day one.

I wonder whether that two-year delay (or even longer - I started feeling iffy long before I was 18 but this is such a creeping, insidious disease that I didn't really notice the changes) played a part in my apparent resistance to thyroxine, which can happen when hypothyroidism has been left untreated for a long while.

The three months after I crashed were awful. I was exhausted, heavy, breathless, nauseous and dizzy with a pounding heart on an almost daily basis. My hair was like straw and it carpeted my floor. Feeling delirious with a brain/body disconnect, I questioned life, and not in the philosophical sense..! I went from pulmonologist to cardiologist to physiotherapist but none gave me definitive answers. Treatments didn't work. Then in February 2011 I remembered I'd once been diagnosed with an underactive thyroid (...I'm blaming the brain-fog for my forgetfulness...). I started on 25mcg thyroxine and eventually increased to 75mcg.

Thyroxine has actually taken the edge off my symptoms but they're definitely still there! I can find it difficult to easily draw full breaths, and at night I sleep propped up to support my 'heavy' chest. The tiredness too is not a normal tiredness. I was talking to a friend about it who jokingly (right?!) suggested I just needed a good night's sleep, and I found myself describing it as a sort of heavy, bone-deep tiredness, not necessarily sleepiness. At night I also tend to be tired but wired!  

I've been to see three so-called specialists but because all my blood work is now in range my thyroid is clearly not the cause of the same ongoing symptoms. Instead I've been offered anti-depressants and recommended therapy. Is it too much to ask that specialists keep up with research? Treatment should be tailored to the individual and based on symptoms as well as tests. I eventually went to see a wonderful private doctor, who treats like that. He first had me increase my thyroxine, but this didn't work. The next step would have been to introduce T3 under his guidance but due to cost I've decided to go it alone.

Four weeks ago I also went to see a medically trained nutritionist who has put me on a strict diet which is similar to the Paleo diet many thyroid people are on. I'm glad I've taken the plunge because a clean, healthy diet is another essential piece of the puzzle, and I'm happy to have found a really knowledgeable doctor to guide me through it. Going cold turkey was actually painless and I don't crave sugar as much as I thought I would!

I don't want to speak too soon, but I do feel as though I have more energy!