What’s Wrong with Me?I had an autoimmune disease. Then the disease had me.

[greygoose]

newyorker.com/magazine/2013...

This woman's story sounds so like mine - except I've never been to Vietnam...

[helbell]

BRILLIANT THANK YOU

This should go viral!

'A lot of people with autoimmune diseases would like to see the establishment of clinical autoimmune centers' Some total.

[Marz in reply to helbell]

We will have to go to Israel to see Dr Yeheudi Schoenfeld at the Mount Sinai Hospital. He spoke on the on-line summit - The Gluten Summit - late 2013. I think he mentioned there were over 200 Auto-immune conditions.

I do think that Docs have no idea how to deal with Auto-immunity so try to treat all the symptoms. Just testing for the anti-bodies in the first place would be helpful for many. I read on here often that Labs/GPs do not test anti-bodies. As it is the most common of thyroid conditions - you would think it routine wouldn't you ?

Thank you gg for posting - a gentle but meaningful read

[greygoose in reply to Marz]

I was in Israel in about 1986. It wasn't a secure place to be then, I certainly wouldn't fancy going there now. Pity that at that time I didn't know I had this disease, and that such a doctor existed! But I didn't. Either of them!

Such a pity that other doctors can't take a leaf out of his book. Yes, immune clinics would be brilliant - but then we'd all get well. And guess who wouldn't like that!

[helbell in reply to greygoose]

I've just spluttered my tea :)))

Are beta blockers, warfarin, statins and synthetic thryoid hormone right up there with the cheap as chips make loadsa dosh?

[greygoose in reply to helbell]

Well, statins alone are making them several small fortunes. Probably beta blockers, too, because doctors hand those out like sweeties. Don't know about warfarin, I think that's rather old fashioned, they now have more modern blood thinners that make you feel even sicker than the warfarin - so then you can take more drugs to combate the side-effects! Oh, it's all so cunningly planned!

Synthetic thyroid hormone is the most commonly prescribed product, but I don't know how much money they make out of it. And it's rather hard to come by compared to other things. But statins - which, if they have their way, everyone will soon be taking! (not me!!!); antidepressants - another regular doctor hand-out; beta-blockers and PPIs (acid blockers) are the fall back prescriptions for all ills, as far as doctors are concerned. If you don't need one, you must need the other! But preferably all four!!!

[helbell in reply to Marz]

Yes, it's actually quite obscene that it is not. My very own GP said the treatment is the same anyway...seems to be a stock response. SHAME on them for not having the balls to explain that we have autoimmune status and therefore this are the other things you could.. even a few tough-love guidelines. Even a handout for goodness sake. Um..nope, that wouldn't work, the NHS can't fund the time for potential panic queries etc.

[greygoose in reply to helbell]

But it's not a question of balls, it's lack of education. They just don't know all these things, they didn't learn them in med school, so they don't exist, as far as they're concerned.

[shaws Administrator]

Thanks for that link greygoose. Many on this forum will be able to identify with the course of her illness. I particularly liked two phrases:-

“How are you doing?” she asked one morning. “I don’t know if I can take this anymore,” I told her. “I just want to get better. I want to go for a day without thinking about my body.”

and

I may never know exactly what is happening in my body. But, unlike people who lack access to good specialists (and the financial resources to make life-style changes), I have been able to manage my disease. My doctors have suggested a long list of tests, only some of which I’ve completed. In May, my endocrinologist speculated, after various M.R.I.s, that I had an “idiopathic” disorder in the hypothalamus which is probably untreatable. In the meantime, however bad I may sometimes feel, I count myself lucky not to be spending my life as, first and foremost, a patient.

[greygoose in reply to shaws]

Yes, she puts it very well. And I for one can identify with her. But, as she says, most people are not as Lucky as her and have to put up with doctors not only ignorant about immune disorders, but totally ignorant about thyroid!

[BrecklandRanger]

"Thyroid patients tend to be preoccupied with antibodies, but Rose, who now runs the Center for Autoimmune Disease Research at Johns Hopkins, notes that one culprit in Hashimoto’s might be the T-lymphocyte—you could have a low antibody count and still be quite sick, or a high antibody count and feel fine. All this uncertainty adds to the shadowiness of the experience."

Interesting if the antobodies come back as low, yet the T-lymphocte may be to blame.

[greygoose in reply to BrecklandRanger]

Yes. Wonder how many GPs know what a T-lymphocyte is! lol Most of them don't even know what T3 is!!!