Tuesday, 7 September 2010

Thyroid, thyroid, thyroid


I'm going to rant. Post son, I was finally diagnosed with Hashimotos Autoimmune thyroid disease. This affects 1 in 50 women in the UK. I have probably had it since my 20's. Throughout my 20's, I would go through periods of being very hyperactive, lose weight, and be frantic, then plummet downhill and put on lots of weight. GP's fobbed me off. "You don't need your thyroid tested" they said, despite a 4 generation history of maternal thyroid disease. Fast forward to post son. I was 5 stone heavier, balding, with skin so dry it bled, and barely able to form a sentence, having palpitations if I walked anywhere. My milk was low, son wasn't feeding well and I was desperate. "PND" the GP said. "Take some anti-depressants". After a terrible night with me up having palpitations and son screaming, I went to A and E and demanded help.My TSh was 450 and my T4 nil. A healthy person has TSH of between 0.5 - 5 and T4 of about 18-24. If I could have gotten out of bed, i'd have sued someone.
Addenbrookes took me on under an endocrinologist. I hated the first one, saw another one. She told me i'd had this since my twenties and if i'd been tested for thyroid antibodies then, none of this would ever had happened. I cried. Then got cross. She told me about the problems it can cause with fertility if we wanted another child (it leads to a much higher incidence of miscarriage and it is harder to concieve. Many women have 10+ MC before falling). Unbeknowst to me, I was already pregnant. Routine testing on my hormones showed pregnancy hormones in there. I was 6 months gone! Panic. High TSH can cause developmental problems with babies, so cue a lot of scans. Luckily for me, daughter is perfect (apart from a wonky ear), and she is truly a miracle baby. Following her birth, I got my angry pants on. Since then, my thyroid has never been under control. And it makes me angry that there is so much wrong with our health system that this diesease goes undetected and is badly treated.

The first problem is the 99% of the people with thyroid disease are women. It is too, too easy to say "PND" or "mental" to them. My sister got told to "go get some exercise". 1 in 50 women get this, it runs down familial lines. In the USA, and Australia, thyroid tests are done routinely post-partum, as the condition commonly asserts itself then. The Oz research has shown that 25% of PND cases were actually thyroid related. A simple blood test would do wonders. So why don't we do it here? Cost. A thyroid patient is on thyroxine for life, and do not pay for it. In the USA, to get diagnosed your TSH has to be above 3. Here, it is above 10. If I had a TSH of 10 i'd be bedridden, but apparently it's "normal". It's "normal" because the chaps (note that) at the British Thryoid Association have decided that for us. And what they say is the law. My old GP was adamant that at TSH 0.02 I was hyperactive, despite my clearly not being so. I took myself up the hospital with my angry pants on and luckily for me, my endo agreed. "It's all individual" she said. But not according to the GP and BTA, whose rulings on this blight the lives of thousands of women every year.


Treat the PATIENT not the number. My great gran's mum was pre-thyroxine. She ate a pig thyroid every so often to keep herself pepped up. She self medicated. Why can't we? Because of the BTA. And why only one medication, and that a generic? If I have a disease of another type, I can choose between many types of medicine. Not here. In the USA, and Europe, I can take Natural dessicated pig thyroid, which not only replaces T4, but T1, 2, and 3. I could take a T4/T3 combination pill, or T3 only. Here, I am stuck with T4 only. And in a generic (for which read cheap) format, which varies widely in potentcy.
Where is the patient choice there? And why don't we get a choice? Money. And attitude. Imagine a disease that affects 1 in 50 men. How much money would be poured in? How well publicised would it be? How many drug companies would be clamouring to help? But not for us. No, this a womens disease.
I'm ranting because i'm cross. I'm due a return visit to the endo this month to sort me out again. I'm going prepared. I've got lists of what I eat (bugger all), so they can see it's thyroid, not fat. I've got a diary of symptoms. I'm ready to hear, again, that this is "as well as they can get me". Well? I'm knackered! I can't think! I want a libido! I want energy again! I want my joint pain to go and hair to grow! It's not "well enough", it sucks! I've got my angry pants on. And it isn't just me. Click here to see the support board I run for thyroid ladies on Netmums, and see how busy it is and how distraught the women are. How they're not listened to. Told they're "not ill enough" for medication yet. Fobbed off with anti-depressants. And check out your family history too, particularly if you are post-partum or menopausal, as these are trigger points. Thyroid Uk have a fab symptom list. They do great work as patient advocates for thyroid sufferers. I bet they wouldn't need to exist if this was a man's disease.

8 comments:

Roy said...

What a bugger.
When we moved three years ago to another area of Peterborough, we had to wait six weeks to get registered with the local health centre down the road. Apparently they cater for so many foreigners, immigrants legal or otherwise and asylum seekers we had to wait until there was slot for us. Of course we can only trace our English ancestors back as far as the 1700's so what chance do we have. I hope you get some good treatment soon Sheridan.

Fenwitters said...

Thanks, roy. As you say, it is enormously oversubscribed in the Fenland area. My Gp, luckily, is fab, and had no problem referring me out of our immediate area and back to Addenbrookes, which means a long drve, but it's worth it. I have not heard good things about Peterborough hospitals, which would be my option otherwise. It is a real issue here, with so many people moving to the area, through immigration and new builds. Looks set to get worse, as they plan to build 1,000 homes in my village/town and more hereabouts thanks to the Eastern Development plan. Of course, they want to do this by selling off playing fields, public open space, and not bothering to improve the infrastructure! Still awaiting a response from our new Tory Mp......

sharie said...

I'm with you, been there and faced idiot doctors who didn't test the right thing. Think mine is due to a vaccine reaction I had when I was in my early twenties...
Mine sort of goes up and down and all I keep getting is 'if it keeps on doing this you are better to have it burned out'. Stuff that.
However, looking on the bright side I can forget things, drop things and threaten people with violence and get off with it by saying 'sorry its my thyroid problem causing it'.

Fenwitters said...

Oh sharie, I know. did they ever test your antibodies? They should test TPO antibodies as a matter of course. I swung about for 10 years. I think that the research points towards an autoimmune reaction to things, I have discovered that I was hospitalised post my first vaccination for 2 months! Researching it, I found that a familial history of thyroid disease means adverse reactions to vaccines, my two have had single jabs as a result. It is worth asking if they have tested TPO antibodies. If you have them , you have autoimmune hashimotos, like me,and it WILL eventually go under once the thyroid has been destroyed, but it too mine 10 years. My mum had hers radioactive iodined, as hers was taking too long. Please mail me if you want info, I have lots!

BECKICKLESIE said...

Hi! Thanks for your comment on my blog. I have read your thyroid post before. I did question my own health when I read it. I'm sorry to hear how many problems you've been having re. your mental health and your weight as well as, of course, all the stress with coming of not actually knowing what is wrong with you.
There's quite a personal question I would like to ask you, if you don't mind. I'm on twitter @Beckicklesie but if you're not I'll keep coming back anyway to check if you've replied. I visit when you post anyways x

Many Thanks again xx

BECKICKLES said...

Oh my gosh, girlie! I've lost your email. Please could you send it me again? Or tweet at me? x

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