Hashimotos & Lupus?

After visiting Rheumatology today I've been advised that I have SLE (Lupus) in addition to Hashimotos. Does anyone else have both auto immune diseases that can give me advice and what to expect?

Dealing with hashimotos has been distressing and life changing over the last year, but to now know I have Lupus which I know nothing about scares me as to what the future holds and if I'll ever lead a normal life again :(

10 Replies

  • MissFG,

    Click on My Communities > +Browse Communities and type Lupus into the search box. There are several HU Lupus communities.

  • Just going to have tests for RA & Lupus myself. Did you get a copy of your blood test results? Can you share them please? I have Hashimoto's, CKD stage 3b. Early onset glaucoma too.

  • Hi @nickinoo1 there we're pages of tests my rheumy did. However I was positive for antibodies for Lupus I think it's the ANA one. They've then assessed by symptoms to get my diagnosis I understand you need at least 4 of the 11 recognised symptoms plus a positive antibody. She also said it was a connective tissue disease. On Lupus UK it sounds like I've done well to get a diagnosis so quickly.

    Sorry to hear your so poorly! My CKD came back normal as did most of my organs last summer but I'm now having more tests to check kidney & liver functions and lung and heart X-rays as symptoms can change quite quickly with lupus in told.

    I think a lot of symptoms overlap between auto immune diseases so it's difficult getting a diagnosis. Iniatiially I think they put it down to my hashimotos but now I'm on T3 and can see some improvement my Lupus symptoms stand out more.

    I've been put on hydroxylochloroquine I think it's called which is a common drug for Lupus but takes 3-6 months to take effect. Patience is obviously a virtue when it comes to autoimmune diseases and our treatment I'm sad to say.

    If I can help anymore please let me know. I originally went to rheumy in august for my tests so make sure you push for your results and follow up appts as it's such a busy dept x

  • Hi

    Never seen a rheumy or nephrologist. GP acts like a gatekeeper. My opthamologist was angry no one had tested me for more autoimmune but I am finally getting tested.

    Which symptoms do you have if you don't mind me asking?

  • Seriously I'd insist on getting referred to a specialist! My gp is very supportive but has limited knowledge and the numerous tests I've had done - I'm happy to message you them - are very specialist only a consultant in that area would really know what to look for.

    My main issues have been chronic fatigue so much so that before T3 I was bed ridden. T3 has helped however fatigue is still a huge issue for me. I also have painful swollen finger joints, dry eyes/ears/mouth, painful muscles and spasms, dry skin, hair loss, loss of appetite - fortunately I'm not overweight from hashimotos, brain fog etc so many to mention.

    My main ones for Lupus though are my joints and muscles, hairloss, dry eyes & fatigue.

  • Ooh forgot dry eyes/ mouth/ nose, brain fog, arthritis in fingers, hair loss difficult to say as I have it cut really short, brain fog is a challenge with my job lol, last year I lost stone & half this year all back on!

    That's helpful thank you but yes please do DM me the tests you've had please. I suspect my results will determine whether I get to see a rheumy or not. Will try via opthamologist if I have to.

    I feel 89 not 49!

  • I'll dm you x

  • I have extreme fatigue, painful hands & feet - you should see me trying to get down stairs in morning it's like walking on hedgehogs, extreme headaches, kidney pain, night sweats, dizzy with nausea, shoulder joint pain.

  • I know the feeling! Thought getting my hypothyroidism under some sort of control might help but it's hard when so much else is going on too! I find saunas and massage really help so I'm joining the gym even if it's just to use the saunas as the heat really does help my joints and muscles x

  • That's a good idea love heat always so cold. I had Levo upped about 6 weeks ago but not feeling the usual effect I do with an increase.

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