Hashimoto's, hypothyroidism and hyperthyroidism are diseases suffered mainly by women, and mainly in silence until things get just too bad. The medical profession seems to, in my experience, have very little idea of how to treat them, and certainly very little idea of how to treat the real person suffering in that body. Here's my story. It may be helpful to read a little about thyroid disease first, as I won't be getting technical, but i'll start with a little precis of what my particular disease, Hashimoto's, does. (There are web links on the page to societies and groups that give medical information).
Your thyroid produces thyroid hormones. These regulate your metabolism, and so by default, your whole body. That's why when something is wrong with it, it's a whole body illness. In Hypothyroidism, your body does not produce enough, so you slow down. In Hyperthyroidism, too much, so you speed up. These are very simplified explanations, sorry! With Hashimotos, you produce antibodies against your thyroid,which kills it off, so you will veer from hyper, to hypo, and finally, end up hypo.
6 years ago, at aged 29, i began to feel "odd". This wasn't just because i was nearly thirty, although I considered that at the time. Nor was it because I was pretty much bored senseless living in the suburbs. I often went through strange hyperactive periods when i would sleep badly, feel shaky and nervous, panic and loose a lot of weight. Going to the doctors, they diagnosed stress due to work (I'm a teacher, and at the time was training) and offered me beta blockers. No, I said, i'll cope. I did. I left the bloke I was living with and left the suburbs. But I was still ill.
So began a strange up and down period of my life which lasted 4 years. I would veer between deep, sluggish, depression, times i called my "Black dog days", where i would gain weight, become slow and depressed and barely be arsed to get out of bed.I'd spend weekends trying to summon the energy to shower or eat, whilst weirdly gaining weight. On nothing. Then i'd swing to being hyper, thin, and frantic again. The doctors got sick of me and diagnosed depression. For two years, i struggled with SSRI's, feeling befuddled and strangely disconnected, while my life fell apart. Was I going to be like this forever? I got tested for thyroid problems intermittantly. I was told I was always "borderline", nothing to be done there. If only i'd known then what I know now! I should have asked to see those results...... But I was just a moany ninny woman. No need to explain why I was being tested for thyroid (a family history i'd pointed out) or explain what "borderline" meant. I was quite clearly mental and needed AD's. That was that.
Then at 33, I said "no more", chucked out the SSRI's, took a long 6 week bike ride and returned determined to find out what was wrong. I'd also ditched a bloke (again) and moved jobs. Maybe now i'd feel a bit more on top of things. For a while I was. I still felt awful at points, but made a determined effort to eat well, live healthily. i felt low at times, but i'd just up the vits and get out more. Things were worse in the Winter, so I took holidays. I met my partner, and the joy of that, plus new couple rudeness, got me through a Winter, and in the Spring I got pregnant.
My pregnancy was healthy, although i did wonder why i gained almost 5 stone. Nobody bothered to check why this had happened to a woman who craved salad during pregnancy. The birth was stressful, I beld a lot (i've since learnt this is a symptom) but I had a healthy son.
Then, i fell apart. I thought at first it was just post baby body mess up. All the Health visitors and doctors told me that it was just normal post baby stuff. I had no frame of reference, i'd never had a baby before. Sure, I was jelly bellied and wobbly. I was coping with a colicky baby and breastfeeding every hour (my milk was always lowish, he fed a LOT. This is also due, i subsequently discovered, to hypothyroidism. But it CAN be done, i'm still doing 3 feeds a day 9 months in. Although i've had enough now, TBH). I was supposed to feel awful. Wasn't I?
I went to the doctor .A young slip of a thing who had never birthed, and quite clearly thought that having a baby at 35 was bound to make me crack up, and I should just get on with it.
Weigt gain: yes, normal post pregnancy. (5 STONE?)
Hair loss: normal post partum. (What, in huge patches?)
Exhaustion: normal with a baby, you'll get used to it. (But sometimes I want to DIE just so i can stay in bed!)
Dry scaly skin: hormones readjusting. (Really? The singing detective post partum, that's me)
Muscle cramps: probably just getting back to normal. (Eh?)
Nobody tested my thyroid.
Then, I got worse. I forgot things, felt slow and depressed, could barely remember to eat or why i'd gone from one room to the other.I'd change a nappy then 5 mins later do it again. I wrote down everything, but i'd lose the notes. I forgot how to spell, and couldn't read a paper. My eyes blurred, i saw double. I woke gasping for breath in the night. My muscles cramped when I walked.i slurred when I spoke, I worried i'd had a minor stroke. My joints ached and my body retained water. My face swelled, my hair continued to fall. My body hair went, my eyelashes and eyebrows, pubic hair, leg hair, all gone.I looked frakish, felt freakish, and was spending most of every day in tears. Just normal the doctor said. Postnatal depression, I'd been on AD's before, after all. No, I said, i might be depressed, but it's because i'm so BLOODY ILL!!!! They finally agreed to more blood tests.
The following week, a phonecall. The doctors said to visit immediately. A normal blood test reading of TSH (Thyroid stimulating hormone) is between 1 and 9. Mine was 485. My antibodies were sky high. My thyroid was dead.
It's been 6 months since then, and i'm stil not normal.But i'm improving. I've moved doctors (no thanks to the previous ones....) and visit a hospital for tests regularly. I'm waiting on results for adrenal and hormonal faliure. I'm on 125mg of thyroxine per day, waiting to go up again in a few weeks. My hair still isn't back, but it's not falling as badly, and i've lost some weight. The hairdresser still looks at me with pity, but at least i'm not still fat as well. Physically, i'm better than I was, but the bonecrushing exhaustion remains. By 9pm every night, i'm dead. My partner rarely sees me able to do more than grunt a faint hello. I'm angry.I feel like years of my life have been taken by misdiagnosis. The endocrinologist I see now can't explain why tests were'nt done years ago. My so called "borderline" readings were always at the top end, and with a family history of immune disorders, I should've been tested for antibodies at once. I've spent years on unnecessary SSRI's, feeling bad, thinking I was insane, when all i needed was a diagnosis that was right. I've spent the first 9 months of my son's life being ill when I should have been enjoying the moments.
Why? Because women moan and have hormones, according to doctors. Who are most doctors? Men. Why were all my symptoms so easily dismissed? And this by a female doctor too? Because women have "women's problems" and it's easy to diagnose them, or depression, or PND, or PMT, rather then look for a physical cause. Also, the blood tests tell doctors what is "normal". They see a number and think "that's ok, about right" and don't look at the PERSON.
Rant over. That's my background.
