Received my medical records in full interesting!

[Newcastlelad]

Hi all hope you are all well. A few weeks back I requested my full medical records and they arrived in the post today. A few things are worrying me a bit and I hoped somebody could help.

First off I have tested positive for lupus anti coagulant 12 weeks apart but still waiting to see a specialist.

So in my notes I noticed some doctor had asked a question to another doctor says what is the cause of this mans erythrocytosis. Nobody has ever told me I had this so I'm a bit confused. Is it related too APS? or could this be the reason I have tested positive for lupus anticoagulant and I may not have APS. I have looked around online and its pretty confusing I hope someone can help thanks any 1 who can help.

[lupus-support1 Administrator]

Erythrocytosis, also known as secondary polycythemia or secondary erythrocytosis to distinguish it from the chronic myeloproliferative disease, polycythemia vera, is an increase in the number of circulating red cells above the gender-specific normal level.

Similar to primary polycythemia vera , secondary polycythemia is a disorder that causes an over-production of red blood cells.

Secondary polycythemia is associated with an underlying disease process (such as COPD), but primary polycythemia is not.

When too many red blood cells are produced, the blood becomes thick, hindering its passage through the smaller blood vessels.

This may be the connection with "Sticky blood" ie APS/Hughes.

The doctor is asking what is causing secondary polycythemia or secondary erythrocytosis and this may be APS as the cause.

The lupus anticoagulant is NOT a test for SLE/lupus, but a complicated blood clotting test.

Please note: I am not a medical doctor and really, you should ask your doctor. Never rely on HU or individuals like me!

With good wishes,

Ros

[Newcastlelad in reply to lupus-support1]

Thanks so much for your reply. At the point of the comment from the doctor in my records nobody had suspected APS or and I had not had any of the blood tests I know have. I'm really worried about it being primary polycythemia vera. Have you ever heard of an APS sufferer with secondary polycythemia? I can't seem to find anywhere which indicated APS could cause this condition.

[lupus-support1 Administrator in reply to Newcastlelad]

I can't comment, but your doctor wrote: Erythrocytosis or Secondary polycythemia, associated with an UNDERLYING CONDITION, whereas primary, is different and is your worry? Therefore, talk to your doctor.

This underlying condition can include: obstructive sleep apnea, obesity hypoventilation syndrome, and chronic obstructive pulmonary disease (COPD).

Don't jump to conclusions. Talk to your doctor to alleviate your anxiety.

With good wishes,

Ros

[MaryF Administrator]

Hi well done on getting hold of your notes, you have already had an excellent answer from Ros, so I will just add that the L.A test is not a Lupus test but one for testing clotting times for Hughes Syndrome/APS.

I also enclose this paper, regarding the other part of your question: emedicine.medscape.com/arti...

I would also ask your GP to look at your Folate and B12 as sometimes things can be made worse by deficiencies: ncbi.nlm.nih.gov/pmc/articl...

Mary F

[Newcastlelad in reply to MaryF]

Thanks Mary I appreciate all of your help so far this site really is a hidden treasure.

[MaryF Administrator in reply to Newcastlelad]

Thank you, all the ADMINS work hard to provide the best support, and we also have many helpful members on here, I am glad you are finding this useful. MaryF