Autoimmune specialists?

As I posted the other day, I'm newly diagnosed with Hashimoto's but also have Type 1 Diabetes, Vitiligo and Alopecia Areata.

I seem to have unexplained bruising appearing now, on my lower legs and elbows and I have pins and needles in my feet.

I've been started on Levothyroxine and am currently awaiting the results of an ultrasound on my throat and thyroid gland. I know it takes a while for the Levo to kick in and I am getting over a bad bout of glandular fever too but I just don't feel right. I feel like someone is slowly pulling the plug on my energy.

Ideally, I'd like to see someone who specialises in autoimmune diseases, so that my 'whole picture' can be looked at, rather than see an endo who might specialise in maybe diabetes but has little knowledge of other autoimmune problems?

From looking on the net, I see in the States they have specialist autoimmune centres. Do we have any in this country,does anyone know? I can't see any mention of such a place.

Failing that, can anyone recommend where I look to find a specialist that can pull treatment of varying autoimmune issues together?

Thank you for reading.

9 Replies

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  • I am sorry you have several autoimmune diseases. Unfortunately if we get one we usually then develop others.

    I don't know of someone who is expert on autoimmune but maybe another member will respond with information.

    You may not be on sufficient levo yet to help you feel better. If you've not had a recent blood test for your thyroid hormones ask for one. Don't take levo before it, have test as early as possible and get a print-out of the results for your own records, with the ranges (labs differ and it makes it easier to comment). If you've not had B12, Vit D, iron, ferritin and folate ask for these to be done at the same time.

    Take other medications/supplements 4 hours apart from levo.

  • Yes, I would like to have mineral and vitamin levels checked, so I will ask for those. I'm considering asking for a coeliac check too.

    Thank you for responding.

  • No we dont have auto-immune centers in this country, nor do we have access to auto-immune specialists in general unless you have AIDS or are exceptionally lucky. Immunologists are the ones who know most about auto-immune conditions, but NHS ones are mainly all allergy specialists and tend only to treat children (some specialist in treating HIV/Aids too), they mainly work in pediatric departments and seldom see adults, so its very difficult to get a referral to one. There are a few in the london area that treat adults with auto-immune conditions, mainly private, I dont have details of an though as when I looked into it, with them all being london based I gave up looking.

    The NHS prefers to treat people with auto-immune conditions under a specialist or team of specialists depending on the condition(s) you have, ie, endocrinologist, rheumatologist, haemotologist , neurologist etc. They are supposed to work together but this seldom happens.

    A few years ago there was a paper published calling for better management for people with auto-immune conditions but nothing ever came of it sadly.

  • Thank you for responding. That's as I suspected then. A shame.

  • Hi Choc, I hope you eat a bit of very dark chocolate as I was just reading how beneficial it is for good bacteria in the gut. Leaky gut is the usual suspect for autoimmune issues. Leaky gut allows particles to enter the bloodstream that become foreign objects to the immune system. Also, genetic defects can also be a precipitator. There are ways of healing leaky gut.

    This kind of doctor (functional medicine or some call it evidence based medicine) if you can find one can be helpful. I'll post one that I have been using for hashimoto patients but he must have other videos about autoimmunity if you check YouTube. Usually some form of prednisone is used to combat it but for a few years now an old drug formerly used for alcoholics in high doses was found to possibly improve those with multiple sclerosis and thought it could help with autoimmune dysfunction. It's called Low Dose Naltrexone or LDN.

  • Thank you for that,Heloise.

    Very interesting video.

    I was put on antidepressants at the start of 2014 because a neurologist told me I had blocked neurotransmitters causing me pains here there and everywhere, forgetfulness, clumsiness etc but at that stage Hashimoto's was not even considered, so it's fascinating to see that video and of course, with me having Type 1 diabetes and blood sugars not quite as stable as a non-diabetic, they would tie in with what this guy is saying.

  • I think that might be a dopamine issue involved in video #2, not because we don't have enough dopamine but the dopamine isn't doing enough probably because of the metabolism issue (my theory only) so you can see that a lot of side issues are involved but it is still thyroid related. I really wish more of this was widely known. We try so many useless strategies and waste time.

  • what about an immunologist i think thats what they specialize in. I have contacted the London Lupus Centre twice and have been given good advice from them which sent me in the right direction and was diagnosed with hashis.I had big sores that wouldnt go away so i sent pictures to London Lupus Centre said i should see a dermotologist because i thought i had lupus dermotologist did bloods my autoimmune markers were 810 and vit d was low i would try writing to them see what they say it cant hurt. i did ask how much to take my daughter there only do private would have cost about £800.00 that was to start. we now know my daughter has ulcerative coloitis another autoimmune disease good luck xx

  • Certainly worth considering thank you for posting.

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