I may possibly be joining you here...not sure yet, have questions...

[MyAngels]

Hi all

After months of feeling rubbish (tired, achy and increasing joint pain in hands, feet, shoulders..) and back and forward to the GP for all sorts of blood tests, they finally found some auto immune antibodies (ANA and SSA Ro were positive?) so have been referred to Rheumatologist with appt at the end of May. In the meantime, whilst checking bloods again, my TSH was found to be 24 and so now I'm on 50mg of LevoT , but, in all the million blood tests they did before, they didn't test for Thyroid antibodies (which hopefully they will at next blood tests in a few weeks).

Can I ask you lovely experts what happens at a first rheumatology appointment ? Hopefully I will have results from another set of GP blood tests (including the thyroid antibodies) by then, but really not sure what to expect.

Thanks

I can tell you what happened at mine, I assume it's reasonably standard.

Firstly I was taken off by a healthcare assistant to get height and weight measured, pulse, temp and blood pressure. I also had to provide a urine sample to check for any signs of kidney symptoms.
I was then with the consultant for about 45 mins; he went through a very thorough history:

• what's your understanding of why you've been referred to me
• biographical details, who do you live with, any pregnancies, what do you do for a living, any relations with autoimmune and/or rheumatology diagnoses
• past medical history and currently active diagnoses
• current medications

• current symptoms you're experiencing and how they affect you - they will particularly need to know about eye issues, skin rashes, any mouth ulcers, joint pain/swelling/dysfunction, gastric problems eg bloating, constipation/diarrhoea...anything that isn't normal for you

-physical examination: listen to heart and lungs with stethoscope, palpation of abdomen to feel for any liver or spleen enlargement, close look at any joints you've identified as painful, swollen etc

From this, they'll decide what blood tests to do and send you for them; they will then organise a follow up appointment for you to go back and discuss results and any treatment indicated.

Thank you so much MichaelSheen - that is really helpful.

I've just been diagnosed with polymyalgia rheumatica. The steroids have knocked the symptoms on the head (thank goodness). Unfortunately my first rheumatology appointment (not with a consultant) was about 10 minutes and consisted of an overview of my symptoms and a prescription. Very little of what MichaelSheen has described happened, although my GP had done blood tests which showed inflammation markers.

Did you have your Vit D checked? I have all those symptoms and low Vit D and having vit D has helped.

Yes, I think I had Vit D tested - the last lot of blood tests I had at the GP tested for 17 things so have rather lost track..

But when I went to the GP in Feb to say I was still feeling rubbish (and she looked at me with the "looks like there's nothing wrong with you - just been revising hard for your exams" (which I had) - I suggested taking Vit D, so I have been taking a supplement since, but no idea how long it takes to work. Can't do any harm though, I suppose..

Thanks

I think if you are taking supplements it takes a few months to restore vitamin D.

MyAngels, you are entitled to see your results so ask for a print out. You can then see where you are low in range in things and consider where you could supplement. For example if vit D is really low, you'll need a high dose rather than the often inadequate low maintenance dose. Often we only get as well as possible when we start to understand where we can make little helpful changes. Standard medication can get us part way, but we often need to do that bit extra ourselves.

I have Hashimotos, B12 deficiency and suffer iron absorption problems. Still unsue if coeliac but definitely gluten intolerant!