Help. So many symptoms.

Hi Susiejx

I'm so sorry you are having these confusing symptoms. But they are all connected to Sjogren's. Although I'm not sure about the hair falling out. I hope your lip biopsy goes well, meanwhile I should ask your doctor if you can have some preservative free artificial tears such as Hypromellose or Snow Tears. Does Vaseline help with your sore, chapped lips? Or perhaps try a lip salve. Hopefully you will be referred to a rheumatology consultant (yes, Sjorgren's comes under the umbrella of rheumatology) who will be able to prescribe some suitable treatment to relieve all your symptoms.

Thanks so much for your reply Poemsgalore. Yeah it was the rheumatologist who referred me for the lip biopsy and an opthalmologist for eye tests. I will definitely mention the eye drops. As for my lips, no amount of vaseline gets rid of my chapped lips. It's so annoying. Oh also forgot to mention that I also keep getting ulcers on the roof of my mouth and sores in my nose. The more I research this condition the more likely it seems to be that. And I'd never heard of it before!!

Does the lip biopsy hurt? I'm dreading it.

xxxx

Not many have, I have secondary Sjogren's because I was diagnosed with rheumatoid first. You seem to have primary Sjogren's (no other auto-immune disease). I don't know whether the lip biopsy will hurt or not as I never had one. The diagnosed me on the dry eyes alone - the added extras arrived gradually over time :-) xxx

Oh no, I wouldn't like anything else as well as this!! Poor you

xxxx

Hi, Susie. Sorry to hear you're having such a bad time. I really sympathise about the problem in the corners of your mouth. That was one of the first symptoms I ever had, 20 years ago now, and it was agony. I got actual cracks in each corner, which bled heavily, and could hardly open my mouth to eat sometimes. And when I went to my GP she just said she didn't know what it was so it must be an allergy!

The good news was that after ten really bad years - dry mouth and eyes, carpal tunnel, Reynaud's syndrome, periperal neuropathy etc. - it all started to subside for no apparent reason, and without any treatment other than common-sense things like eyedrops. I've had hardly any symptoms at all for five years except for the occasional inconvenience - as a matter of fact, I'm just getting over one of those unbelievably painful sores in my nose, so can sympathise with you on that one too! I usually have at least one ulcer somewhere in my mouth at any given time - which is annoying - and I tend to have dry lips in winter but don't have very much else. I've tried lip salve but it seems to make things worse in the end - though maybe that's just me! - so I prefer to live with it. Don't let yourself lick or bite your lips, btw - I find I'm mysteriously inclined to do that!

The only other thing I've been left with now that I seem to be in remission is an underactive thyroid gland, which can also go with Sjogren's. I hope your doctor has checked this out with a blood test. Hair loss is one of the symptoms, along with extreme tiredness. (Constipation too.) You should ask about this, as it's easily treated with lifelong synthetic thyroid hormone, taken once a day. Unfortunately, although this will slow down the hair loss, it won't revive the follicles that have already died off, so it's better to start asap if you need it. An underactive thyroid can also cause heart problems if it's left untreated for too long.

Above all, don't be too gloomy. Lots of people with this condition have long remissions and it occasionally goes away altogether. I'm coming up to 70 now and though I'm officially retired - which makes everything easier, of course - I still manage to hold down three quite demanding voluntary jobs which take up about 25 hours a week, as well as having an active social life.

Can't help you with the lip biopsy. Like Poemsgalore, I didn't have to have one as my condition was diagnosed on signs and symptoms along with a blood test (high levels of anti-salivary gland antibodies). However, I once had a skin biopsy for an unrelated condition on my thigh - suspected melanoma which turned out not to be - and it wasn't all that bad. They only take a very tiny bite.

Thanks for your reply Lily. I wish I had your mindset but it's so difficult at the moment. I'm starting to feel really miserable because I haven't even got the energy to get dressed most of the time. Hopefully I'll get some medication and I can feel more human. I'm hoping for a remission very soon. Oh and as for the lip picking, I know it's bad but I actually like it ha.

xxxx

Susie, are you sure you've been checked for thyroid problems? Your feelings of exhaustion could be down to Sjogren's alone, but this is a classic symptom of an under-active thyroid, especially when accompanied by hair loss. I felt tired and demotivated all the time before my thyroid problem got diagnosed, but the thyroxine (synthetic thyroid hormone) has helped a lot, even though it made me feel a bit rough for the first couple of months. I really think you should bring this up with your doctors. Sjogren's is known to attack the thyroid gland in some people.

Yeah - know what you mean about the lip-picking thing!

Hi Lily, had bloods done and doc said my thyroid level is normal, although I have put 2 stone on since August (that's how long I've been ill).

xxxx

Hi all,

I too have had a blood test to check my thyroid. I go for the results tomorrow. I had awful itching that my GP thought might be under active thyroid. I haven't lost any hair through Sjogren's though. But I had chemo for breast cancer last year and I certainly lost it then. :-)

Lily, I'm glad your symptoms have subsided and hope that continues.

Susie, I'm glad your thyroid level is normal.

Best wishes to you both

xxx

Susie, I'd strongly urge you to get a second opinion on the thyroid question, especially now you tell me you've put on two stone in six months - another symptom of under-active thyroid. I had the same problem with my doctor. I'm a former nurse, so knew something was wrong when I was always tired, constipated, losing a lot of hair. This went on for years, but my T4 (principal thyroid hormone) blood levels were always within normal range, albeit on the low side. However, my TSH (thyroid stimulating hormone secreted by the pituitary gland) was always way over the limit. This is a sign that your pituitary is really having to gun the thyroid to get it working. Different doctors have different views on this. Mine, like many others, insisted that if my T4 levels were (just about) OK, it didn't matter if my pituitary gland was working overtime.

In the end, I stood my ground and insisted there was something wrong. She wrote me up for a special urine test (which I gather is a recent invention). It's not available in the continental European country where I live, so my sample had to be sent across the border. It came back strongly positive for "covert" thyroid insufficiency - though as far as I was concerned there was nothing remotely "covert" about my symptoms, which were glaringly obvious! It was only then that she referred me to an endocrinologist, who did all the tests and immediately put me on thyroxine. This hasn't helped my other Sjogren's symptoms - most of which are in remission anyway - but it's certainly cured the tiredness and constipation, and has significantly slowed down the hair loss.

I'm still mourning my eyebrows though. I was very dark when I was young, and had heavy black eyebrows that met in the middle (like the artist Frida Kahlo!) These were the bane of my life and I was always plucking them and wishing they'd thin out. Now they've disappeared completely and will never grow back, I miss them!

Just don't be too trusting of your doctor on the thyroid thing. I know it's harder to get a second opinion in the UK than it is here, but it shouldn't be impossible.