High antibodies but Dr states I do not have APS

[ajb1969]

Hi

I had a rheumatologist appointment last week and the Dr asked me various questions and then advised me that I do not have APS.

I have had two blood tests, which have both resulted in high antibodies, however the blood tests were only one month apart.

The reumatololgist stated, that if my third blood test is high again, then he will suggest I take aspirin.

I actually forgot to ask him why I have high antibodies and why would I have to take aspirin, if I don't have APS?

I would appreciate it, if anyone could help me understand this, as I probably won't get to speak to this Dr again.

My mum was diagnosed and passed away, many years ago, due to this condition.

Thanks

Amanda x

[Lure2]

Hi Amanda,

I saw you had difficult problems with your stomach and severe pain some time ago. Are those pains better today? Tell the Specialist of this if he gives you Aspirin perhaps.

You live in England and you must look for an APS-Specialist (as APsnotFab told you earlier) who works with people with autoimmun illnesses like us daily. That is very important.

Your mother died from APS you say. I am sorry about that. Was she diagnosed by symptoms or by autoantibodies. This could be important as APS may run in families.

Did you have high positivity to Lupus Anticoagulant or Beta-2-Glycoprotein-1 or Kardiolipinantibodies?

Best wishes!

[GinaD]

If this is a consultant who will not take the time to properly communicate with you, which your prediction that you wont be able to speak with him in the future has lead me to conclude, then its time for another doctor!

[MaryF Administrator]

Hello, you would be advised to find a Hughes Syndrome/APS consultant who actually fully understands this condition, including your personal family history, if in the UK plenty under 'pinned posts' over on the right hand side, of the forum, and also on our charity website: ghic.world/ This website will continue to develop and over the next few months there will be further information. Do keep detailed notes of your symptoms and also medical history, including any relevant information regarding relatives past and present. I hope you get the correct guidance. MaryF

[ajb1969 in reply to MaryF]

Thanks xx

Amanda

[Hayleyrose28]

I see Professor D’Cruz recently - he said, despite having highly elevated antibodies, I don’t actually have the syndrome, due to never having had a miscarriage / DVT / stroke etc.

He said he would have usually put me on aspirin as a precaution, but as I have quite severe stomach problems, he’s just leaving me on hydroxychloroquine (as I have an existing diagnosis of SLE, so was placed on this a year ago). Like others have said, though, I feel it’s probably best to seek advice from a specialist, especially considering your family history x

[ajb1969 in reply to Hayleyrose28]

Thanks for your reply.

When you were advised that you didn't have APS was it because of an infection or due to another issue, was it because of this SLE diagnosis?

If you don't mind me asking, what's SLE?

Thanks

Amanda x

[Hayleyrose28 in reply to ajb1969]

Hi

It’s purely because I have never had any clots (whether in the form of stroke / DVT / causing miscarriages etc) so for that reason I don’t have the ‘syndrome’, but the antibodies are certainly there.

So my beta 2 glycoprotein 1 igm and anticardiolipin igm results were both consistently elevated 3 months apart this summer - from my understanding, that rules out any question over it being caused by an infection.

Sorry, by SLE I meant lupus (Systematic Lupus Erythematosus) - which, for reasons I’m not entirely sure of, can go hand in hand with APS or elevated antiphospholipid antibodies. So, I believe that I’ve got the elevated antibodies due to having lupus, and my professor says I’ve just got to keep an eye on clotting issues a bit more than normal now.

Hope that makes sense, and feel free to ask any more questions if you want to x

[ajb1969 in reply to Hayleyrose28]

Hi

Thanks for replying.

Yes that totally makes sense to me.

So really grateful to you, thank you.

I thought that was the reason too, for me not having APS. I've never had a miscarriage or blood clot.

I've probably had an infection or something. I was so happy to hear I didn't have it, I totally forgot to ask questions.

I'm totally fatigued at the moment and my memory is atrocious too, thyroid issues, so I'm blaming that

Thank you again, really appreciate your reply xx

Amanda xx

[Lure2]

I read today that you also had thyroid-issues among other things.

After reading more from your medical history I think it is very important that you now find a Specialist of autoimmun illnesses. Thyroidea-issues are often linked to APS.

[ajb1969 in reply to Lure2]

Hi

Many thanks for your reply.

I had very high antibodies from the blood test result for cardiolipin antibodies and I had the Beta-2-Glycoprotein-1 test too but my primary doctor didn't do the lupus blood test.

I had the same blood test again, a month later and they were high again, I think my doctor did it a month later because I was getting very dizzy and nearly passing out and I was very worried about my health, and that's why I only had to wait about 3 months for the referral to see Dr Aslam, and another doctor said that I could have the third test at the hospital.

I've just had the tests redone and the lupus test, for the first time, last week. I haven't received my results back yet.

My doctors referred me to this rheumatologist because I think he is a specialist in APS. My referral did state I was seeing a specialist team.

And, I've recently spoken to another person from this site, who stated that she'd recently seen a Dr Aslam, who was new to her, from Chapel Allerton hospital, in Leeds, and she said she was seeing a specialist. So I'm assuming he's an APS specialist.

I'm thinking that I don't have APS because I've never had a blood clot or a miscarriage.

I've read that you can have the high antibodies but it can be due to an infection. And I was taking antibiotics last Christmas and read this can also raise the antibodies.

I just wish I'd discussed this with the doctor at the time, for clarification, perhaps I'll be able to, after receiving my next blood test results but it's very difficult to see these doctors. You always have to have a referral from primary doctor and it's a battle every time.

I have suspected adenomyosis, and bad pain from this. Also I have severe lower back pain and unable to walk very well or far.

I also have hypothyroidism. Dr Aslam stated he will refer me to see a endocrinologist, as my primary Dr wouldn't. I think I might have hashimoto's, as my blood tests come back high for this too. My vitamin D is always low, even though I take a supplement myself everyday.

A previous reumatololgist stated that I have chronic pain, and not fibromyalgia as my primary Dr told me and apparently there is something wrong with my pain signals and they're sensitive.

Amanda x

[Lure2]

Hi Amanda,

Lupus (SLE) is another autoimmun illness very close to APS with sometimes the same autoantibodies. Around 30 % of SLE (Lupus) patients have Kardolipinantibodies and may have APS also. Those patients with only APS and no other autoimmun illness are called Primary APS. I have that and I live in Sweden by the way.

"Lupus Anticoagulant" is the third bloodtest they do to diagnose APS in the blood. I guess you did that bloodtest when you say the Doctor did the Lupus-test.

You have had a lot going on for several years and this time I hope you have been referred to a Doctor who works with patients daily who have APS, SLE (Lupus), Thyroidosis, Sjögrens, RA etc etc. They are all difficult to diagnose and they go hand in hand why it is even more difficult. That is why it is so very important to find a Specialist.

It is a strange illness with many organs involved and most of us here have had to fight hard to find that Doctor. I have been on this site for 6 years so I have read a lot of medical stories from members so I know.

Did I understand that your mother died from APS. Was it from a stroke or...? Tell that to your Doctor.

Good Luck and please let us hear how it goes for you!