Nice to see this here

[scaryteacher]

Great to see that there is a section for those with auto immune disease; it feels quite lonely having one sometimes.

[earlymorningtea]

Hi all.

I have hashimotos.

[lazycrazyhazy]

Bumping this as I think it's a really worthwhile thread to have. I'm learning about new auto-immune diseases too. It really keeps on giving doesn't it? Been on holiday myself and it was lovely and hot which usually helps my RA but also very humid which really doesn't!

[peppersaunt]

So glad this topic is here! I've had UC since 1998.

[BestIsWest]

Parathyroid disease here if any one wants to know anything about it

Specifically primary hyperparathyroidism.

[woosey35]

My daughter was born with hypothyroidism which corrected at 13weeks), has secondary addisons (although I think it's primary), anaphylaxis and asthma, growth hormone deficiency, and just been diagnosed with chronic regional pain disorder and fixed dystonia. Anyone got CRPS? This is one I'm struggling to get my head around. She's only 8. Tricky to watch as her leg turns manky before my eyes!! Anyone?

[Jajc]

Hi lupus and fibromyalgia here! Thought I was going mad til I found my doc at London lupus centre. I gave up wheat/gluten last October cos of suggestion on lupus U.K. Chat room and it has massively reduced my symptoms especially the ibs aspect. So so lovely to connect with others dealing with autoimmune issues , the invisible diseases! Only my best friend has seen me during a flare and not really a bad one. I guess it's difficult for people to understand cos when you're bad nobody sees and when you're out it's so great to be out that I hide any symptoms I'm feeling but often pay the price when I get home so nobody sees !

[lazycrazyhazy]

So true Jac. We look fine most of the time so people don't understand. I think the idea of changing Rheumatoid Arthritis (me) to Rheumatoid Disease is a good one and seems to happening in the US. People don't understand RA and say "my aunt had that in her hip" or whatever.

Woosey
I can't help with the chronic pain syndrome (sorry should have noted the name can't see your post when replying on app) but hope someone will know. My adult DD has Hashimoto's (we all do) vitiligo, idiopathic anaphylaxis and angiodaema (sp?) and is being looked at for MACS (mast cell activation syndrome). She has been on steroids for 18 months which worries me.

My DH and DD1 are gluten free which had also helped hugely with chest infections in DH who has a rare syndrome (auto-immune of course!). DH has terribly thin skin due to steroid use which is a worry...

[DCFlemingreportingforduty]

Hello, all! Didn't know we had a topic for this until I spotted it by chance.

I have a lupus-y kind of MCTD (the diagnosis has shifted a few times over the past 20-odd years) and Sjögren's syndrome.

One of the things I find hardest about having an autoimmune disease is that, whenever I have any new symptoms or pains, I don't know if it's one of my conditions flaring up, or if I've just caught a virus, or if it might be perimenopause. It makes it hard to plan/ treat symptoms effectively.

A few years ago I was very sick with pericarditis. It was never ascertained whether it was viral, bacterial, or autoimmune in origin. It doesn't really matter I suppose; it was bloody awful and I thought I was going to die!

[frocksnogandbusters]

Hashimoto here!!! Well, doctor not actually used that description but my antibodies are definitely raise (638 & 239)......does that count?? Are they raised sufficiently to be hashimoto?! She has suggested going gluten free and I'm taking various supplements and hormone supporting stuff ( DHEA, vit D, progesterone, B complex, magnesium, omega 3, GSH, probiotic 20billion)

[lazycrazyhazy]

Frocks - and thyroxine I assume?

[frocksnogandbusters]

Lazy........no...... should I be!?!

[lazycrazyhazy]

Well I'm no medic but there are 4 us in my family with auto-immune Hashimoto's and we are all on some level of thyroxine.

If you're not getting symptoms of too little thyroxine in your blood then perhaps you're ok but it's something to watch for. Normally the TSH is raised and the level of thyroxine is low but there is a scandal in this country that it's tested too simplistically and not holistically. Google and you'll read all about it.

Most GPs just test TSH and T4 and say it's ok. They don't ask "how do you feel?" my aunt had hugely swollen feet with fluid and terrible periods. It was only when she saw a more sympathetic doctor she got prescribed the thyroxine and felt so much better. The previous GP had just looked at the tests, it's just "blood test says no".

There are other tests they can do including (I think) T3. There's a good site called something like 'top doctors for thyroid' if it still exists, it's USA but lots of Brits when I last looked.

[plus3]

Another one very pleased to see this topic! Ulcerative Colitis, well controlled with Aziathioprine ...hi everyone

[holdthewine]

Just bumping before it gets classified as a zombie thread as there seem to be quite a few posters in other categories recently with auto-immune problems. There are a lot of us out there

[Bluesheep8]

Hi all, I have MS (diagnosed 18 years ago) no meds at all, ever - I'm well aware that I'm incredibly lucky! And psoriasis, some day there is a link....

[holdthewine]

Blue yes I think most specialists now believe MS is auto-immune. My dear friend was diagnosed in 1981 in her 20s after a period of stumbling and blurred vision but she was ok.

One neurologist told her not to have children but the other said it was up to her. She had two with no problems. After an unrelated surgery she had a minor stroke in her early 50s. Turned out she’d never had MS but had had a major stroke in 1981 which was misdiagnosed! These days with scans hopefully that wouldn’t happen!

Here’s hoping you stay well.

[Stopyourhavering]

Anyone else with Vasculitis?...just been diagnosed with cutaneous vasculitis and currently on high dose steroids, have appt with rheumatology/dermatology consultants this week to discuss next phase of treatment...l?low dose chemotherapy ( cyclophosphamide)....anyone else had this?
Taken 16 months to diagnose ( started with iritis , joint pain and fatigue) and I'm currently off work with horrible ulcerated legs and unable to walk very far....on loads of tablets for pain relief...just feel wiped out ....and alone ....as no one understands how debilitating this disease is

[holdthewine]

Stopyourhavering: my DH has a rare form of vasuculitis but there are degrees of it and thank God he is under control at the moment. Chronic illness is such a pain, in every sense. I’m constantly flaring lately. Going to have a steroid injection this week to try to get it under control again and have had my medication increased by my rheumatologist.