help regarding blood test showing normal after being diagnosed over 32 years with RA anyone else had this problem

had RA since beginnig 1980 over the years have had flare ups various tests that showed the flare ups well 2 years ago had a massive DVT in leg was told RA caused it also had xray showed lung affected after another clot this year in the lung well went to the Doctor 3 weeks ago as the tiredness was so bad took blood test it was returned nornal no futher action what I want to ask has anybody else had this happen to them also when I was first diagnosed was told body was destroying its self result of RA told the new doctor this but nothing since

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  • Hi Huggybear

    I can't answer your question as I have only recently been diagnosed with RA but what I wanted to ask is if you have been diagnosed with Hughes Syndrome? Hughes Syndrome (aka Antiphospholipid Syndrome or APS) causes clots and is an autoimmune disorder that causes the blood to become sticky hence clots can appear anywhere in the body. It sounds like you could be suffering from this. There is a Hughes Syndrome forum on this site. It might be worth also asking questions there.

    Karen x

  • Hi huggy,not sure about Hughes syndrome,or d. V. T. But have you had your thyroid. Checked as this can cause extreme tiredness, may be worth asking your gp and thyroid. Is closely related. To arthritis good luck big get better hugs

  • If you are worried don't rely on one GP, get a second opinion - by a specialist if necessary.

  • It sounds to me really important that you should push for further tests and diagnosis. Just because you have had a diagnosis of RA before, it doesn't mean that everything you get is caused by that - the doctors should be keeping an open mind.

  • Hi Huggybear - sorry you feel you are not getting the right answers. Do you have a consultant rheumatologist you've been seeing over the past 30 years and what medications have you been treated with? I don't know enough about people who have had RA for a long time to know how it manifests in the blood - or doesn't. Can you still be sero-negative after that long? It seems to me that your doctor has no right to dismiss you if you are feeling bad still and you need to see a different GP because something obviously isn't right.

    I was told by someone on the NRAS helpline that RA natural remission can occur sometimes when the disease has rampaged it's way around the body and seems to burn itself out finally - but it will have done lots of damage on the way. I'm really not sure what to say but it sounds very unsatisfactory and I don't think it's for a GP to be so dismissive when you've been through so much. Tilda x

  • Thank you so much for your help and I will take it on board

  • I'm glad - you remind your GP that blood only sometimes tell the story - it's your symptoms that matter. My rheumy said it's important to treat the patient not the blood so please remember this and demand the support you need. I wish you all the best and please come back and tell us how you get on. Tilda xx

  • thank you for your support and I will let you know when I get to see the doctor LIz

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