bloods! low platelets, high haemoglobin???

[Brychni]

As usual, I am not sure where to post this:

Firstly I have antibet2glycoprotein 1 antibodies which thicken the blood. I should be taking a daily aspirin but often forget mainly becasue I am not motivated to as I also have low platelets.

Will have been waiting for nearly a year to see my rheumatologist in October as my appointment has been cancelled three times. She has referrd me to heamotology becasue of purple spots and low platelets.

Just had full bloods done at GP becasue of all of this, platelets still low but now I also have HIGH Haemoglobin! We chatted for ages about the asprin thing and she was very thorough but both of us completely overlooked the haemoglobin. So I suppose I should call the surgery and ask about this and arrange another test?

Does anyone have any clues about what this may mean?

Thanks

[hunter5582]

The meaning of your CBC results require the attention of a attention of a hematologist for a proper interpretation. You would also need to look at your hematocrit (HCT) and the other indicators of red blood cell status. Note that if you do have erythrocytosis, this thickens the blood and is a primary risk indicator for thrombosis, microvascular symptoms, elevated blood pressure and other issues.

When you say you have low platelets, do you mean low normal or below reference range? Low normal vs thrombocytopenia makes a difference in diagnosis and in treatment decisions. Note that erythrocytosis can be a greater risk than thrombocytosis. People with polycythemia vera can have erythrocytosis but not thrombocytosis and do need aspirin to prevent risk of thrombosis.

Suggest you consult a hematologist ASAP. If you do have a MPN, which is not clear that you do, then you will need to consult with a MPN Specialist. Note that any doctor could order the MPN Myeloid panel that would check for the MPN driver mutations (JAK2, CALR, MPL). That is one of the key steps in assessing for a MPN.

Hope you find answers soon.

[Brychni in reply to hunter5582]

Thanks so much for your reply. In answer, my platelets have been consistently below normal for more than a year, but not low enough to cause worry. However, I do get petechiae and purple spots a lot and ever more frequently and have had episodes of nosebleeds over the years and unnaturally heavy periods. I also have Raynaud's which is getting worse or changing and I recently had a digital ulcers for the first time. The antibeta2glycoprotein 1 antibody was discovered about 4 years ago at rheumatology. It's common in lupus, RA and scleroderma and of course antiphospholipid syndrome and th one I have is responsible for thickening the blood and causing clots in all of the above. I also had positive scan on wrists hence the Inflammatory Arthritis diagnosis. They forgot to check the antibody again but in the end it was my GP that ordered the follow up and 2 years after the first test it was confirmed that antibeta2glycoprotein was still there and high.

My rheumatology appointment has been cancelled several times and so I've had to go yo GP in the meantime to ask if I should be taking my prescribed aspirin in view of the low platelets and spots. (Should mention that I have been referred to haematology but been waiting for ages. I had the JAK2 test because if all if thus about 3 years ago which was negative. ) She was very thorough and agreed I should have an answer, not least because although I self injection Fremanezumab for lifelong and severe migraine and cluster headaches, most days I still have to take painkillers including high doses of aspirin just to get me to work in the morning. So I desperately need guidance on what I'm supposed to be taking. The injections have allowed me to return to full time work for the first time in years and I just don't want anything to upset the appl cart!

In addition yo all of this my father had CLL which was diagnosed relatively young, 59, and his leukaemia underwent a Richter's Transformation. He got a stem cell transplant but died of infection almost immediately afterwards. My grandmother his mother had polycythemia (jak2 negative) which turned into a leukaemia. She had enlarged spleen which was removed and all sorts of other issues. So naturally, I do worry about all this. I have discussed it with my rheumatologist and she said it was good that I was on hydroxychloroquine 'because of the blood problems'. Cryptic and a bit worrying 😟

Thanks again.

[hunter5582 in reply to Brychni]

You really do have a complex and concerning situation. What you are seeing with your CBC could be related to your complex medical situation and the drugs you are taking; however, with a family history of triple negative PV and leukemias, you cannot make assumptions. It seems likely that a bone marrow biopsy will be needed if it has not already being done.

If you are already taking a high-dose aspirin for the pain, it seems unlikely that a low-dose aspirin would be recommended. You really need clear instructions from hematology on that issue.

Hope you get answers soon.