Hi everyone this is my first question but this site has already helped me a lot. I had undiagnosed issues for about 6 years until I took it into my own hands and started to research things myself. With the help of this site and a few others I became confident I had auto immune conditions Like Sjogrens and APS. I have now after much convincing of my GP to run the tests have tested positive for lupus anticoagulant.
For about a year prior to this test I have suffered with problems with my veins. From what I can understand I also have livedo reticularis in my knees. I have severe knee pain and it sound like I might have Osteonecrosis which I have read is a complication of APS. I get lots of lumps appearing in many different parts of my body which usually bruise at first. For example if I take my blood pressure on my right arm the vein in my elbow swells up as if the blood is stuck at the point in my elbow where the painful lump is.
I now have numerous places around the body where it just keeps getting worse and worse.
My GP admitted at the time of testing he did not know a great deal about APS but he phoned a hematologist at the local hospital who told him there was not really much treatment for APS (I was very shocked to hear this with what I have read myself on this site about blood thinners)
Could anyone give me some advice. I'm currently waiting for the follow up blood test to confirm the antibodies are still there and my GP has said if they are he will refer me to a rheumatologist.
Is it normal to have to wait for the second test to show the antibodies are still there to be started on treatment even though I'm having the problems listed above?
I think I might have had a DVT a while ago but the symptoms cleared up in about a week with no treatment can this happen?
Just to make clear I have no diagnosis for any of the above problems apart from the positive antibody test. My medical care is really poor so I have had to research things on my own to get this far.
Sorry for the long post and thanks for any help.
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Newcastlelad
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Hi, at least your doctor admitted he did not know much about the condition, please give your GP our charity website to look at: ghic.world/ On the front are some specialists, and we also have quite a list over on the right hand side of the forum, under pinned posts, you will those specialists, nearest to your area, (I am guessing Newcastle), you can take your pick of who is nearest.
It is in the interest of your GP, that you are referred to one of these and not a Haematologist who has not skilled themselves up with a working knowledge of this disease.
It is also advisable to test you Thyroid adequately, and bear in mind a lot of us order our own tests due to the NHS mainly only doing the TSH test which fails many people. If somebody says they have had their thyroid adequately tested for years on end, and only done it via their GP or hospital, it has not normally been adequately tested. Often doctors tell patients they have Fibro... and all the things which should be checked, have not, plus the tests are not great.
Also check your levels of B12, D, Folate and Ferritin. Again when I test myself I do my Thyroid plus include these tests. This way I get an accurate picture of what is going on. Any good Rheumatologist will run things like a CRP or ESR which normally pick up inflammation.
All of my problems started with a b12 deficiency I got as low as 90 and had a really bad peripheral neuropathy. I also was shown to have vitamin D deficiency too. I'm currently still on b12 injections and vitamin D replacements.
It is funny you mention Thyroid. For about 1 and a half years the right lobe of my thyroid has been getting slowly bigger like it is inflamed. My GP ran TSH levels and they were ok. I have been for multiple ultrasounds of my thyroid and they always tell me it is fine. I know it is not as I can feel the swelling getting bigger and I can see it myself. I even payed for a private ultrasound to see if a different person could see the swelling but again they reported it was completely fine. The right lobe is firm and significantly bigger then the left. My mother has just been diagnosed with Hashimoto's so I was convinced I had this too but they said it looked like a healthy thyroid. It is driving me crazy! as I know the inflammation is there and can't understand why it can not be seen.
You can order your own tests, this is a good panel, annoying I know, to have to fund it. medichecks.com/thyroid-func... and join Thyroid UK on this platform. At least it will prove one way or the other what is going on with that. MaryF
Well done, read up on the instructions if blood draw at your nearest private place, then easy, but if not the finger prick requires a certain amount of blood, if you follow the instructions it is ok, and try and do it at the beginning of the week so it does not get stuck in the post at the week-end. You can load up your results on TUK, with your personal details taken off to get the opinion of the administrators on there. MaryF
Yeah I'm a couple of weeks away from the follow up test. I was just thinking are any people given thinners after the first positive test if they are have multiple signs of clotting? I understand I haven't had the full blown DVT or worse and understand the NHS have to wait for a definite diagnosis it just seems a bit dangerous reading how suddenly things could develop.
I understand your worries but without a diagnosed clot and the 2nd tests many doctors are too afraid to prescribe anticoagulants or anti platelets incase of bleeding.
I see you are taking Marys advice and doing the thyroid blood tests and not long now until you get your 2nd tests, your doing everything you can to help yourself while waiting, try and not get too stressed, as this certainly won't help either.
Many of us have to do our own research and you are doing great, get ready to give your GP a specialists name, when the time comes.
Let us know how you get on with the thyroid and 2nd tests?
Hiya - I live in the North East of England if that's the Newcastle you're from I was diagnosed with APS after a blood clot in my leg but had to fight for a diagnosis after loads of help from this forum and seeing the list of specialists in my area I'm now seeing Dr. Griffiths at the Freeman hospital after seeing that doctor I was diagnosed with 3 other illnesses connected with APS - I currently take warfarin to prevent myself from developing more clots, but I'm not 100% sure whether they can start treating APS until there's a complication from it (blood clot, stroke etc) - although in my opinion prevention is way better than cure - hope you get some answers soon and good luck
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