gp has just rang me, and I haven't got a clue.

[dylantt]

a while ago I had a lot of tests done due to tiredness and pins and needles. I needed some iron and he decided to up my levothyroxine again. Strong family history of pernicious anemia so b12 was checked.

Today he's rang because the antibody tests he did have come back amd the scl 70 test was positive. He is putting in a referal.

He asked about pains. I get pains in my fingers, knees and feet along with the pins and needles. I have a back that just goes sometimes. My hips haven't been the same I had spd when pregnant 13 years ago.

I have reflux (medicated). I also have exczema, asthma, ilo, hayfever, oral allergy syndrome, menieres and a post nasal drip. I have a stupid amount of allergies and get random hives. I woke up one day covered in little red spots, this was just after starting symbicort so it was put down to a reaction to that and I was changed to duoresp. They are still there. I also get strange bruises.

I've just had my gallbladder out and the hypothyrodism is the result of a hemithyrodectomy for a multinodular retrosternal goiter.

I don't know anything. Does any of that sound related?

[MissusTee]

Do you have raynauds? That’s usually one of the first indicators. Some people have positive blood tests, but never develop scleroderma. Apart from the reflux everything else you describe is fairly non specific really, but I think your gp is wise to be on the safe side.

[dylantt in reply to MissusTee]

I don't, my daighter does. My hands and feet are always freezing bit they don't change colour. My hands are fingers are swollen though, my wedding ring is stuck on at the moment.

[OldTed60 in reply to dylantt]

You don’t have to have Raynaud’s as the first symptom of scleroderma - I didn’t - I had inflammatory arthritis and reflux with painful burning feet. I suddenly started getting Raynaud’s a year afterwards when I had already been diagnosed with inflammatory arthritis. People with scleroderma often have had Raynaud’s since they were young so it is most common symptom but there are many different presentations and some, like me, have late onset Raynaud’s.

I’m hypothyroid too but mine is the autoimmune type known as Hashimoto’s - most common type I believe. Good luck with rheumatologist when you get to see one.

[dylantt in reply to OldTed60]

I was tested for hashimotos antibodies by endo, they never gave me the results so they'll have been negative. My hemi was due to a retrosternal multinodular goiter. It was on the larger side and I have swollowing issues, so ENT said once that was happening best just to take it out. As it happened FNA showed a thy3f, so there was no choice but to remove it. The issues improved but didn't go away, but I also have ILO and that can cause swollowing issues too.

I'm hoping the appointment will come through sooner rather than later but apparently the waiting list is on the longer side

[OldTed60 in reply to dylantt]

Yes I understand. But my point was that this probably isn’t relevant to the overall autoimmune picture anymore than the gallbladder (which I too have had removed) problems are. That said, any of these invasive procedures and the treatments can trigger autoimmune diseases or flare ups if we are predisposed.

But scleroderma, which your quite specific antibody points to, is a rare autoimmune disease - whereas goitres and diseased gallbladders are common problems anyone can have and not autoimmune. So I would expect the rheumatologist to be more concerned about whether you have classic symptoms such as hand swelling, reflux and Raynaud’s.

Unfortunately there was a pre-existing shortage of rheumatologists prior to the pandemic and now, with long Covid and those waiting for diagnosis and review - the backlog is probably going to mean a long wait. But at least this gives you time to read up on reputable sites such as SRUK and try to focus on stuff like anti inflammatory foods and improving your overall wellbeing.

Best of luck

OT60

[trunchalobesity]

I am Scl 70 positive.

The other items you mentioned like gallbladders etc are unrelated.

You need to be referred to a rheumatologist.

They will answer any questions x

Best wishes x