Link between Hypothyroidism and Sjögren’s Syndrome?

[BlueMoon65]

Anyone out there with Sjögren’s Syndrome as well as hypothyroidism? I am sorry to keep returning with apparently unrelated questions! Since six weeks, had very bad pain in one lung, plus very painful leg. These appeared to be unrelated, but a locum GP had foresight and looked at red cells, then at my request did another test for myeloma ( close family member had these symptoms and was confirmed with the condition). Test negative, thank goodness. But still have lung pain after antibiotics; dry eyes and mouth for twenty years, which I assumed in retrospect were thyroid-related. Still very tired, pain in joints, sweating, unexplained fevers for a few hours. A former GP, in 2002, said he thought I had Sjögren’s.

[Hillwoman]

There are quite a few people here who have both conditions.

I had a tentative diagnosis of Sjogren's over 20 years ago, but some of the symptoms that led to it were resolved many years later when I took charge of my own treatment for hypothyroidism, PA and RA. Among other things, I still have problems with dry eyes that are often sore and painful, and sometimes there is swelling, but I haven't been back to the rheumatologist to see whether there is now a firmer basis for diagnosis. They tend to throw steroids at everything, or other very serious meds, so I'm reluctant to seek a re-referral.

[BlueMoon65 in reply to Hillwoman]

Sounds very similar to my own experience. Was referred in 2001 to a Rheumatologist, who demolished me completely and made me feel I was imagining my problems, as when I saw her it was several weeks after a really bad episode of red, swollen eyes, urine problems, fever, malaise and total exhaustion . Six months later I received a summons for a CT scan on my chest, with no explanation. The technician said they were looking for clots. Quite surreal! After that, my GP looked at my red, itchy arms with white scar patches and said I ‘could even have Sjögren’s..’. Like you, I would decline steroids or chemo, so maybe we had a lucky escape!

[BlueMoon65]

Thanks so much. I will definitely follow this up....

[silverfox7]

I’ve just been diagnosed the dry eyes and have has a PE in the past apparently caused by a new hip operation but I don’t have antibodies so don’t seem to fit in anywhere!

[MichelleHarris in reply to silverfox7]

2. The lack of any definitive blood tests

However, more than 50% of patients with neurological manifestations of Sjögren’s syndrome may not have autoantibodies. In patients who have neuropathy and compelling glandular symptoms of dry eyes and dry mouth, negative blood tests for SS-A and SS-B antibodies do not exclude the diagnosis of Sjögren’s syndrome. In the context of sicca symptoms, further diagnostic studies are warranted, including a Schirmer’s test, and a minor salivary gland biopsy.

[milkwoman]

Not only do I have hypothyroidism (but not hashimotos) and Sjogrens, I also have lupus (SLE). In addition, I’ve tested positive for the APS autoantibodies not never have had an “event” (DVT, blood clot, etc. so no formal DX of APS).

I don’t know if there is a connection between any or all of these. I was very healthy all my life prior getting sick so it’s all been quite a mystery (and a life change) for me these last 6 years..... I wish I could turn back time.