Hi everyone-new to this-just getting over shingle... - LUPUS UK

LUPUS UK

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Hi everyone-new to this-just getting over shingles-saw locum gp last week-suggested go to own doc and have blood tests for lupus?

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I have underactive thyroid, white blood cells constantly in urine(put me on 6 months anti-bio) had pleurisy dec 2011, infection lymph nodes under arm, swollen fingers, bruises just 'pop' out all over..had lots of heart tests etc, temperature, well like dreadful hot flushes, sharp like stabby pains occasionally in arms. the worst is this overwhelming feeling of tiredness. Been to own gp having various blood tests week today- she thinks it is coincidental but will do tests.i feel really fed up today-trying to research- and the more I think -over the past few years have had one thing or infection after another and they just kept fobbing me off - then I see this new doc - and he seems to think showing classic signs for lupus- but I never have had rash and I like the sun and don't suffer in sun??so I bit confused. apologies for wittering on......

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Purpletop profile image
Purpletop

The rash is only one of the symptoms, not everyone has it. The same with photosensitivity. The other symptoms that you mention suggest autoimmune disease, so it is good that your GP is on the ball and checking it. It took me 2 years to get my GP to even consider sending me to a rheumatologist, he never checked for lupus himself, thought it is all down to stress and anxiety (yeah, right). Not that I wish you to have lupus, of course not. But it is good to have everything checked with this in mind and if it turns out that it isn't, so much the better. Good luck with the results.

-fudge- profile image
-fudge- in reply to Purpletop

Hi thank you for your reply - rang doc this morning to order prescription and hey ho they had messed up yet again!! and receptionist said you should be here for blood tests - (it was def next week)told me to get right there so just had test for tsh. u&e. lft. ggt? Bone profile. vitamin d. RF. coag screen. esr. fbc. and lupus screen. They had never taken lupus test before! so not sure how long to results.. I am back at work this afternoon - but still feel sooooo tired.

Purpletop profile image
Purpletop in reply to -fudge-

The lupus anticoagulant strangely has nothing to do with lupus but with anti-phospholipid syndrome (APS) (or sticky blood, tendency to coagulate too much and produce blood clots). Good set of checks, any results yet?

-fudge- profile image
-fudge- in reply to Purpletop

Hi nurse rang last nt with some results -I have a 'deranged liver function??. Lupus test result she said they have to have 3 individual blood tests??before results... so got to have another one friday and repeat liver function test. fbc got to be repeated got notes on screen she said for any allergy /hayfever.??thyroid ok. esr fine, clotting fine. she seemed vague regarding what results meant so have booked to see doc after nurse- bruises still 'popping' out here there and everywhere. feel so so tired, having lots of 'sweats' lost appetite and feel pretty down. Any body know what a deranged liver function is... is it normal to have to have 3 lots of bloods taken for lupus - she said lab has to have them within 4 hours... sorry ranting on

Purpletop profile image
Purpletop in reply to -fudge-

I used to have poor liver function tests but once the lupus was brought into line, those improved. I don't know what tests they are doing now and what they are looking to see but you will probably do many more on liver, to rule out other causes. You will need to start being more assertive about what tests they are doing and why - ask them to explain them to you and get copies of the results. Not only that you will need those for yourself to have a good record but also for cases where you get referred to other specialists, to give them a proper medical history and avoid duplicating tests.

-fudge- profile image
-fudge- in reply to Purpletop

thanks for message - to be honest do ask but I don't think they know thereselves!! when she had to take lupus one she had to go and ask 2 other nurses what colour bottle blood had to go in one nurse didn't know and the other had only ever taken one test.... will def ask for print out of results though and your right got to be more assertive this needs sorting out.. thanks again

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