I've been following the work and updates of SRUK for a few years now with great interest. My physical health declined in 2008 and after various appointments with different departments (neurology, orthopaedics and lastly Chronic Pain Services) it was suggested I most likely have Fibromyalgia.
So it was left at that and due to GP's lack of knowledge of Fibro I have self-managed ever since and sought support outside of a clinical setting.
Around 5 years ago I developed Raynaud's, then Telangiectasias, shiny and discoloured skin on my hands and in the last couple of years, I've been experiencing a dry, irritable cough with 'silent' acid reflux, although I've also had a post-nasal drip for over 15 years. My most recent appointment has been with the Speech and Language Therapy Service to explore my cough and voice difficulties, which is where the 'silent' acid reflux came from.
Any GP interaction so far has resulted in a lack of interest with the view that it's all part of Fibro.
I had some blood test done privately a few years ago and I have a positive ANA, ANTI CENP and ANTI Ro (SS-A). I also have a positive autoimmune thyroid result although the standard test of thyroid disease is normal.
Where I am at now is that my throat and chest are really starting to cause increasing discomfort and tickly cough (you the type where you just about end up choking!)
I'm really at a loss on where to go now but I do intend to call SRUK and maybe I can get some leaflets to give to my GP?
Thanks in advance for hearing me.
Catherine
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Cazie50
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Hi Cazie, can you ask your GP to refer you to rheumatology? That’s what I did years ago with mine and he seemed only too happy to pass me on. If the GP refuses you could ask for a different one.
It seems clear you need some specialist input, particularly if your lungs are affected.
I have found you MUST be your own advocate as the GP holds the golden key to the doors of consultancy. I struggled for 5 years to get my GP to believe there was even something wrong. The surgery thought I was a hypochondriac. I, too, paid for certain blood tests and when I came back with the result was fobbed off and told 1 in 3 test this way? UNREAL. I have constant reflux, even though I am on omeprazole 2x a day and on 150 mg of hydroxychloriquine a day for the SSL. Still struggle with pain. I aIso paid to privately see a gastric doctor. Oh, the incompetence. It makes me
So angry. I am convinced it is all about saving money. All that time they wasted not treating my SSL. Make yourself a nuisance.
Thank you everyone who provided insight from your own situations.
I spoke again to the GP today and would only go so far as to prescribe Omeprazole. He said that although he may consider a referral to Rheumatology at a later date he said there wasn't enough evidence to warrant it at the moment. He also said there was enough pressure on these services at the moment.
At the very least I tried to encourage him to at least find out if my Raynaud's is primary or secondary. Knowing full well that if I can at least get them to see its secondary I may get somewhere.
He said he also wanted to check for joint disease. I thought that was a bit odd as I'm not entirely convinced that that is one of the symptoms of Limited Scleroderma.
Again, I think their limited knowledge and understanding of these kind of conditions gets in the way of common sense.
I know of no other way to access Rheumatology
I shall just have to keep persevering and try each of the GP'S in the practice in the hope that one will listen.
If your ANA is positive and anti-Ro then I’d say that your GP is being negligent by not referring you to rheumatology with these symptoms. Fibro isn’t a diagnosis really - it’s just non specific “functional” pain.
It’s not for a GP to determine if you have joint involvement. Please be very assertive and tell them that shiny skin, telengecstasia, cluster spots on hands, chest and face plus GERD and Raynaud’s are 4 of the 5 CREST hallmarks so you technically fulfil the criteria for limited Scleroderma.
None of these can really be attributed to Fibromyalgia on its own. Anti Ro is most associated with Lupus and Sjögren’s. They are fobbing you off about joint involvement - which can occur in Scleroderma, Lupus and Sjögren’s plus others. But they are systemic autoimmune diseases and Inflammatory arthritis is not necessarily a feature so the GP is wrong about this too. It’s the main feature of RA and PsA But not of Scleroderma or the others.
Hi Catherine, sounds like a nightmare and I hope it resolves for you soon. I would definitely be fighting tooth and nail for a referral - testing positive for the antibody is a large part of the formal diagnosis. So I can't see how they are refusing to refer you. If you can, go to another GP and maybe seek a better opinion with chance of referral?
Everyone here is so helpful, some members know more than the experts it seems! So there's lots of help available until your referral comes through.
Good morning Cazie I read your post and I have friends, and myself included who find that approaching GPs on auto immune issues is like banging your head against a brick wall. I have come to my own conclusion which is that GPs don't know every detail about all illnesses and especially auto immune problems and like you patients get the standard diagnosis that its Fibromyalgia because that seems to be the most popular go to diagnosis. I think the post that from pino99 is the way to go, get a referral to Rheumatology.
I have gotten to the stage now that I dread asking any GP on my condition although I have to say my Medical Centre is great and they try and I feel that Im expecting too much as they are not consultants on one particular illness. Also the pandemic isn't helping and when I cannot get answers or I need an answer and cannot get through to a clinician I write to them with my problem. My Consultant has been very good and written to my GP for me concering any treatment for Raynauds during this time.
I do hope you have success as it is so frustrating.
Your G.P sounds a bit 'green' in matters pertaining to autoimmune conditions, and I have never heard of Fibro' causing Raynaurd's!!!
As someone else on here mentioned, Fibro is really a collection of 'unmeasurable' symptoms: it's what doctors diagnose when they don't know what is causing the symptoms. Blood tests usually come up negative for everything and there is no inflammation apparent on, for example, x-rays or scans. It is assumed to have something to do with pain sensitivity perception I think.
Going back to your symptoms, I think it would be worth starting with the positive ANA result, and its possible link with Hashimoto's. Do you happen to remember the titre? About 10 per cent of the population test positive for ANA in low titres, but folk with undiagnosed Hashimotos - autoimmune Thyroiditis - can also test positive for ANA. You mentioned you have positive antibodies for Hashimotos (?) and therefore you probably DO have it, even if your TSH isn't high enough yet for you to start being medicated. You say your GP said your thyroid result was 'normal'. Did s/he mean the TSH level? Sorry, but if it is above 4 you are going to suffer with a range of continuous ailments if you have Hashimotos. In this country, Levothyroxine is only prescribed when the TSH reaches 11; in most other countries it is 4 or over. (Just for comparison, a healthy adult's is 1.5 - 2). I think it would be worth asking your GP for a print out of your latest blood tests and take it from there.
As you are on health unlocked, it would also be an idea for you to talk to someone on the Thyroid UK forum (GreyGoose is very knowledgeable in the blood test department) about your bloods, symptoms and possible treatment.
One of your antibodies is associated with Lupus, but again, these results don't, in themselves, mean a great deal - except for the thyroid antibodies test.
When an ANA test is positive (especially with a high titre, and the symptoms warrant further investigation), the next blood test done is called an E.N.A panel; it looks for autoantibodies specific to connective tissue diseases (of which there are about 6) in order to try and pin down which disease it is as they are more or less specific to one disease type. Very occasionally, however, there can be an overlap of antibodies (more than one type present) leading to a possible conclusion of mixed or undifferentiated connective disease, or a false-positive. If your GP refuses to do an E.N.A test, you can have it done privately through an online lab such as Medichecks UK. I think it costs about £60.00. From there, you could refer yourself (privately) to a rheumatologist if your GP still won't listen, which costs about £200.00.
Lastly, Hashimotos can, albeit rarely, cause Raynaurd's, but if memory serves me right, I think it disappears once medicated with Levo' properly, unless, of course, the Raynaurd's is due to connective tissue disease such as Sclero' or Lupus!
A lot of ifs and buts, I know, but that doesn't mean you should accept your GP's diagnosis.
I hope you are able to get a correct diagnosis one way or another and start feeling better soon.
Hi I agree with all you say apart from about positive anti Ro & La - which are part of ENA and are pretty specific for a connective tissue disease - mostly Sjögren’s and Lupus - not just vague like ANA.
My ANA was high positive when I was being undermedicated for my long-standing hypothyroidism but now I’m properly treated it’s just always a weak positive again so this is a really interesting observation though - thanks.
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Long-term use of PPIs for acid reflux
oesophageal dysmotility
