LUPUS testing and advice.

[UrsaP]

I haven’t really posted on here much, if at all, before as I only have suspicions of Lupus/Sjogrens. I saw a GP last week (for other reason) and asked about proper testing for Lupus/Sjogrens as I have been living with lots of possible symptoms for many years. I also have hypothyroidism and though not fully acknowledged by the GP there is some low adrenal function issues. I have had blood tests for both Lupus and Sjogrens in the past, but nothing showed. No further investigations were sought. I’m seeing this GP again tomorrow to discuss this further and I want to push for a proper referral to someone who will do whatever tests necessary, to rule both these conditions in or out. A friend has recommended the Birmingham Centre of Excellence. However I wondered if anyone can recommend anyone nearer to Northampton. There is a Centre of Excellence in Oxford. If anyone can make any recommendations I would appreciate it.

Any advice for tomorrows appointment would also be welcomed.

[puffyface]

I know there is a Birmingham Centre of Excellence..and have heard it’s good. Also London Bridge Hospital. I started there and moved to see someone in Oxford for convenience (and he wasn’t very nice at all) so now go to Swindon...because she is good and knows her stuff. It’s trial and error. Some rheumys think that Sjogrens is about a dry mouth and eyes. Others know it’s much more complicated and causes problems everywhere. What symptoms are you having?

[UrsaP in reply to puffyface]

Thank you for reply. Just at gp now to discuss. Lots of lupus symptons over years but coukd be sjogrens or hypoT as have that. But something flaringband dont thinkmit is thyroid.... lived with that long enough to know. Going to.try push for referal to brum then. Wish me luck...

[puffyface in reply to UrsaP]

Good luck! I have thyroid and a lupus/Sjogrens overlap...it’s so hard to work out what’s causing what symptoms. I hope you get to the bottom of it all 😊

[UrsaP in reply to puffyface]

Thank you. I suspect the same, with some adrenal issues thrown in for good measure. They have referred me to the Bham C of E so happy about that will be happier when I get an appointment.

[puffyface in reply to UrsaP]

That’s great. Fingers crossed you get an appointment soon. I also have adrenal antibodies...perhaps we can teach the docs a few things. I always feel that I’m telling them things they do t know! I’m the meantime...don’t take on too much and listen to your body. 😊

[UrsaP in reply to puffyface]

Hi, thank you. Had the letter to confirm referral. Just got to hope the CoE does not reject the referral. Had a couple of those with no real explanation, from eye clinic, hoping a Lupus assessment might help there too.