I'm posting on this forum as don't really know where else to post but as HLA-b27 is auto-immune related, the lupus forum seemed most apt and as I have previously posted, I do have a lot of the lupus symptoms
I've been to my GP today for a follow up on the blood tests done at the beginning of October. I'd been told by the receptionist that my Vit D and TSH results were abnormal, so I've been haunting the Thyroid UK forum for the past 2 weeks. Get there today and my thyroid is normal, my Vit D was deficient at 30 and the HLA-B27 had come back as positive. The ESR result was "slightly raised" - sorry I didn't get a copy of figures. My ANA result was normal.
I've been given Vit D pills Colecalciferol 20,000 to take twice a week for 6 weeks and then a months worth of daily 1,000 for after, then she told me to buy over counter as will be cheaper.
Regarding the HLA-B27 she was talking about Ankylosis Spondylitis (as I had initially complained of joint and back pain), then waffled on a bit about how you could be positive and not show any symptoms till you were 90 at which point my husband (who had accompanied me as I can never remember anything much!) said "Well, she's in her 40s and she is showing symptoms so you need to refer" - another reason why I took him along - he can be forthright when needed
So, now she is referring to the rheumatologist (it will be Broomfield Hospital in Chelmsford if anyone else has been there).
Of course, I got googling as soon as I got home as no idea what this HLA thing is and see that it is actually linked to auto-immune diseases, not just the ankylosis spondylitis. As we waited to see the GP I was talking with my husband how you have to pick what symptoms you are going to discuss with GP as you can only discuss one thing at each appointment (big posters in our surgery stating this...) and you just have to hope you have picked the one that will get you the test you need
My symptoms are:
fatigue/ feeling weak
rash on exposure to sun
red rash across cheeks
glands up - seems all glands all the blinking time currently lol
cold feet and hands
pins and needles in fingertips
stiffness in back, hips and neck
inability to regulate temperature - I wake up at night so hot I feel nauseous - as an experiment I started taking my temp when I wake like this and it is usually about 36 - 36.5 degrees so not hot at all!?
shooting pains from wrists up arms
And probably others I cant think of right now - oh yes, brain fog is another lol, you know how it is
So, finally, getting round to my questions:
Anyone know anything much about this HLA-B27 thing and can explain it simply!
What do I say to Rheumy when I finally get there? I had an extremely severe case of glandular fever when I was 18 and I have never fully recovered. I've had these symptoms for 25 years and this is the first time I have been referred to anybody. And I still wouldn't have been today but for the pushy husband I have been unable to do anything much in my entire adult life - I'm incapable of holding down a full time job, days out are pretty much impossible most of the time and if they ever do happen necessitate bed rest for days afterwards! Getting anyone to take me seriously has been a almighty struggle - I know this is no major news to most of you - been there done that, t-shirt etc!
Any advice very gratefully received thank you