Sjögren’s and fatigue help

Yes, I get itchy skin too. Especially in winter. Just keeping skin moist with skin cream can help. Regarding fatigue. I suffered that for some time too then discovered I had an underactive thyroid. Since taking medication for this the fatigue has gone. Get it checked.

I agree with Irene on the thyroid issue - though I'm guessing your doctor will already have tested you for this. Hypothyroidism is a common symptom of Sjogren's.

However, doctors have varying approaches to this. My former GP let me suffer with an underactive thyroid for five years, during which time I lost a lot of hair and became very tired and constipated.

If you can get hold of your blood results, check both TSH (thyroid stimulating hormone) and T3 & T4, which are the actual thyroid hormones. TSH is secreted by the pituitary hormone and stimulates the thyroid to produce its own hormones. If TSH is very high, it means the the pituitary is having to gun the thyroid gland extra hard to make it produce hormones.

Some doctors (like my former GP) believe that it doesn't matter how high TSH goes - and mine was astronomical - but all that matters is that thyroid hormone levels are within limits. Others think that if TSH is very high, there's hypothyroidism, regardless of T3 & T4 levels.

In my case, I knew my thyroid was underactive because of all the hair loss, but it took years for my doctor to refer me to an endocrinologist, who immediately agreed with me and put me on L-thyroxine (synthetic thyroid hormone). After that, the hair loss stopped - though the lost hair never re-grew - the constipation cleared up and I felt much less tired.

I'm starting to feel very tired again lately, but I don't think it's down to my thyroid this time, as all my thyroid readings, including TSH, are fine and I'm not losing hair. I think this may just be down to Sjogren's itself - fatigue being a common symptom - old age or a mixture of the two.

Sjogren's is a complex disease, and you often have to try and unpick the various elements. Sadly, this sometimes falls to us, the patients, when our doctors don't know enough about it.

Amy, my expereince with Sjögren's fatigue was different to both Irene and Lily's. I can't be sure but think my fatigue was inherent to Sjögren's itself. 

For the first four months after all my symptoms started I was critically fatigued and could barely get out of bed into an upright position. I was being monitored for thyroid issues at the time where there was no problem and still no thyroid problems. I thought I had ME but couldn't understand if all the other symptoms that I had were ME related.

Eventually the fatigued lifted somewhat such that for a few days each week I felt that I could function. This continued to improve. The real turning point for me was when I was diagnosed with POTS (postural orthostatic cardia syndrome) and was started on low dose Propranolol. POTS can accompany Sjögrens as part of autonomic failure.

Anyway as a new Sjögren's 'devotee' I'm sure this is all too much information.

One thing I have found though is that in Sjögren's there may be many symptoms assaulting you but they don't all stay around forever. Hopefully your fatigue will lift in time but you just have to be patient.

Thanks everyone for the advice, I’m sure my doctor checked my thyroid and it was all ok, I will double check though as my brain isn’t working as well as it usually does my doctor thinks I may have fibromyalgia running along side the Sjogrens. I’m hopeful the hydroxychloroquine may relieve some of the symptoms. It’s also good to know your fatigue just weaned off meg something to look forward to 

Sorry to hear about the nausea. I had a little acid reflux today, but I had tomato sauce, which did not help. Hope our bodies adjust. Take care!