anaemia and hydroxyl and platelets: My platelets... - MPN Voice

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anaemia and hydroxyl and platelets

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My platelets were 800 three months ago and have gradually been coming down and were 510. The last blood test said they were at 540 and my haemoglobin has come down to the level of anaemia. Surely the hydroxyl caused this but because my platelets have gone up by 30 she has upped my hydroxyl! I also don't know why I wasn't given iron tablets

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4 Replies
Otterfield profile image
Otterfield

That doesn't seem like a huge rise in platelets so I would suggest you ask your haematologist why she feels that your dose should be increased. Iron tablets don't necessarily help with low haemoglobin, but again, please ask her whether they might be appropriate for you. Do you feel anaemic - breathless, lacking energy?

Good luck with this.

Cja1956 profile image
Cja1956

I agree with Otterfield. It does seem strange that he is increasing your hydroxy when your platelets are only at 540. Also, I am post Et Mf, and I developed anemia about 3 years ago. At the time I was on Jakafi and anagrelide. In 2019, I found an mpn specialist and she said that the jakafi may have been contributing to my anemia. She took me off of both medications and changed me back to hydroxy and EPO injections. My hemoglobin stabilized after about 4 months and now is in the normal range. I think a second opinion is in order .Good luck with everything.

rebeccaxxx profile image
rebeccaxxx in reply to Cja1956

I would suggest calling and asking to speak to the specialist nurse, and if that is not available to the consultant, so you can better understand the recommendation to increase your hydroxy, and what may be causing the anaemia. If that doesn’t help orient possible then a second opinion as other have suggested would be best. We can’t understand it as your dr should have all the information but if they are not communicating their reasoning to you that needs to change. Good luck!

hunter5582 profile image
hunter5582

HU suppresses all hematopoiesis. Myelosuppression and anemia are well know effects from HU. online.epocrates.com/drugs/... .

Fluctuation from 510 to 540 is not a significant change. Upping the HU based on that single read makes no sense particularly in the presence of a known adverse effect from HU. Also note, that 600 is considered an appropriate target level for cytoreduction by some of the leading MPN experts. silvermpncenter.weill.corne... .

Some docs do want to get platelets into the "normal" range even though there is no evidence that it reduces risk of thrombosis. Many docs now target actual symptoms rather than a generic number of a lab for all patients. It is very important to have individualized treatment goals and strategy based on your unique presentation of a MPN. Many hematologists do not have the KSAs to do this. That is why consultation with a MPN Specialist is so important. Here is a list. mpnforum.com/list-hem./ ,

Educated and assertive patients receive higher quality care. Passive patients do not. It sounds like you already know what makes sense for your body. Suggest you gather the information you need and then make your own decision. The doctor makes recommendations. The patient makes decisions. That decision can and likely should include seeking MPN expert consultation.

All the best,

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