Who deals with multi autoimmune

[Filicatlasy]

I have 5 different autoimmune diseases, hashimotos, coeliac, pernicious anemia, hyper parathyroid, and sarcoidosis. I had Covid in September and now appear to have long Covid and it has put all off the above into overdrive. I want to see an autoimmune specialist. Fed up being passed from pillar to post.

[Barrister]

I don’t know that there is any one type of specialist who treats autoimmune diseases because they affect so many different parts of the body. I have Hashimoto’s, colitis, PsA, Addison’s/Adrenal Insufficiency, Pernicious Anaemia.

[Sparklingsunshine]

Hi

I'm not sure they exist because autoimmune conditions affect all, of the body in various ways. So you'll have endos for thyroid, gastroenterologists for coeliac, haematologists for PA etc. I don't think there's a medical speciality for autoimmune conditions, unless it's immunology. But even there I'm not sure.

I know what you mean though, its extremely frustrating when you have multi organ issues and you have to see a specialist who maybe knows about one.

[shaws Administrator]

I believe you need to consult a Specialist on Polyglandular Autoimmune Diseases. There is a 'Type 1, Type 2 and Type 3.

rarediseases.org/rare-disea...

Some Endocrinologists may have the knowledge required to help you.

[MMaud]

Filicatlasy - you say you have Long Covid; are you seeing a specialist about that?

Many areas now have Long Covid (LC) clinic in hospitals. Understandably, they are busy, but if you are struggling to move forward, it could be very useful to ask for a referral.

A friend of mine has really had a hard time with LC, and has found the LC clinic to be very helpful. Hers has all sorts of disciplines there, from infectious diseases to occupational therapists, physios, psychologists and so on.

In order to access the LC service, my friend had to go through an eye watering amount of testing to discount any other causes.

Good luck with it all.

[Filicatlasy in reply to MMaud]

I am in the being passed from pillar to post stage so due to lack of long Covid clinic or overall autoimmmune specialist, I have two endos, one for thyroid and one for parathyroid, two gastro one for bowels and one for coeliac, a cardiologist, my gp is dealing with my Vit B12, Folic Acid and Vit D deficiency, neurologist for my Brian fog, and other neurological symptoms, neurosurgery monitoring me for symptoms of a return of my meniginoma and now an opthamologist and an audiologist due to both blurred vision and tinnitus and loss of hearing.

[MMaud in reply to Filicatlasy]

Oh boy. You have a lot going on!

I really do hope you manage to navigate it all.

[serenfach]

I have Raynauds, Hashi's, Vitiligo, Arthritis, Dupuytrens, Lederhosen and Neuropathy. I have seen Consultants for the Hashis which did not help, and all the rest get ignored by the medical profession. I did have one hospital doctor tell me the Vitiligo was because I did not wash properly. I was too shocked to hit him.

I have found when my thyroid levels are good, all the rest tend to go to sleep for a while, or progress slowly. The vax woke them all up, and now I have heart problems to add to the list.

I have lived with all the autoimmune for a while, it is just me, and how it is. Luckily no one else in the family has any.