saw consultant today

[charlieab]

Hi

Just a quick update.

I saw vasculitis specialist today who was very thorough. The consult lasted about an hour. He seemed to confirm the recent psoriatic arthritis (PSA) diagnosis and said it could explain swollen fingers, painful joints etc.

"Luckily", while I was there my livedo flarred up and so I didnt have to rely on the very poor pic on my very old mobile phone. He said that it looked like livedo and agreed that the PSA wouldnt explain it. He said he would request a second set of APL anti-body tests but also said that he believed in seronegative APS.

He also said that he would request a whole load of other blood works to try and get to the bottom of what was going on.

He didnt think I had vasculitis which was a relief but did think I could have fibromyalgia on top of other stuff. Im not sure what to think about this

[MaryF Administrator]

Hi the trio of disease is Hughes Syndrome, Sjogrens Disease and Thyroid issues. A lot of us such as yourself have other things, I have Psoriatic Arthropathy also, plus a few other things.

As you in the middle of a round of testing, please make sure beyond the tests being done, you have B12, D and Iron, and very importantly your thyroid both for antibodies as well as the TSH Test.

However I will caution you at this point, and say that the tests on the NHS ie in particular the TSH are very unreliable. In order not to be labelled with Fibro, I was sure to test my B12 which was low, my iron which was low, my D which was low - and I did extensive and detailed private thyroid testing, which showed I had an underactive thyroid. Too many patients are sent away with 'your thyroid levels are fine' but better testing reveals a different picture.

A lot of us on here have done the private testing to rule it in or out!

MaryF

[charlieab in reply to MaryF]

H Mary

Thanks for reply. Having read your posts on this site, I had meant to ask the consultant about thyroid tests. But then I forgot, along with forgetting quite a few others things. But I'll send him an email tommorow I think. My iron and B12 are good apparently but I have been asking GP for vit D test. He said that they didnt do them anymore, which sounded a bit odd. Maybe he meant the lab didnt.

Thanks again. Hope you are well.

Charlie

[charlieab]

Thanks alot Apsnotfab.