Hair loss and Sjogren's
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Does anyone else experience hair loss with SS? Going from doctor to doctor for my hair loss is how I got my diagnosis for SS. It was when my dermatologist referred me to an endocrinologist where I heard the term Sicca Syndrome. I went home and started doing research on Sicca, that lead me to SS and voila, I made my own diagnosis.
I started losing my hair about 4 years ago. I would say now that I've lost about 50% of my hair. The 50% I still have is very dry, brittle and lifeless. I have stopped searching for a cause of my hair loss after being diagnosed with SS.
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lily65668 tammi70556
Posted
Hi tammi, you have been tested for an underactive thyroid, haven't you? I'm guessing yes if you've seen an endocrinologist but one never knows...
SS - like most AI conditions - is famous for attacking the thyroid. It happened in my case. I went on losing hair for several years before insisting my doctor do something about it.
The problem is that there are two elements to thyroid blood tests. One is the levels of actual thyroid hormones (T3 & T4); the other is thyroid stimulating hormone (TSH) secreted by the pituitary gland in the brain. If the thyroid hormone is struggling, levels of TSH will be raised, in an attempt to gun it into action.
A problem can arise from two conflicting schools of thought among doctors. Some think a seriously raised TSH indicates hypothyroidism, even if T3 & T4 levels are within range; others think that as long as T3 & T4 are OK, a raised TSH is irrelevant, whatever the level.
My doctor fell into the latter category. For years my TSH levels were three times or more above maximum limit, but she kept insisting no action was necessary because my T3 & T4 were within range, albeit low-side. During all that time I was losing hair, and my formerly heavy eyebrows disappeared altogether. I finally insisted on being referred to an endocrinologist, who diagnosed hypothyroidism and put me on L-thyroxine. Since then my excessive hair loss has stopped, though none of the lost hair (including my eyebrows) has re-grown.
If you're being told you don't have a thyroid problem, try and get sight of your blood results to see what your TSH levels are like.
tammi70556 lily65668
Posted
lily65668 tammi70556
Posted
Oh dear! It's really not a good idea to self-medicate when it comes to thyroid problems. If your TSH was low you were clearly pushing yourself towards hyperthyroidism. If anyone isn't happy with their doctor's take on thyroid problems (as I wasn't originally) it's better to find another doctor or insist the current one refers you to a specialist. If you send your thyroid out of whack it can interfere with your electrolyte balance and cause all kinds of other problems.
Now you're back on the correct medication you'll need to be monitored at least once a year (preferably every six months) to make sure your blood thyroid hormone levels stay stable.
I too have given up hope of regaining the hair I lost during the five years my doctor wouldn't accept that my thyroid was underactive. Once lost, it usually doesn't grow back. The hair loss at least stopped once I went on medication though.
I get the impression it's slowly getting worse again now, but I think this is partly down to the general dryness making my already very fine hair brittle and fragile. It seems to be breaking off rather than falling out. I take omega 7 and fish oil (as well as eating oily fish on a regular basis) in the hope this will slow down the process a bit, but I suspect it's part of ageing. Genetics also plays a part. I've always had baby-fine hair, even though it grew thickly when I was young. My mother had the same type of hair and appeared practically bald by the time she was 80. (And I've only got six years to go till then!
)
tammi70556 lily65668
Posted