Red Blood Counts - ET

I have ET, jak 2 negative, and am on HU and aspirin.

Has anybody else had low red blood counts, mine have been a bit low for over a year, not massively so, they have gone from 3.42 to 3.03.

The specialist nurse also said the haemoglobin is sometimes low as well. I go back in a couple of weeks, and she said if the counts hadn't gone up they would have to investigate why I was anaemic. I haven't had any bleeding from anywhere.

I wondered if it was the HU that caused it, I take 2 x 500 mg for 5 days and 3 x 500 mg for 2 days. I have lost 2 stone over the last 6 months (slimming world). That has been hard work, it hasn't exactly dropped off, but I wondered if the weight loss affected the dosage?

Any ideas anybody?

8 Replies

  • Hi Lizzie

    I've been told by my he am that my little bit of anaemia is being caused by the Hu and if it goes down further she would just take away one of the Hu per week I take 11 per week now .

    I also thought that like some other meds that the amount is connected to body weight but I could be totally wrong it's only my thought .

    Either way I hope they sort you out

    Helen x

  • I think your weight loss is important because the dosage is tailored to your body mass index and often a big weight loss can mean your dosage being reduced. Be sure to mention that you have lost weight through your slimming club and not just without trying. Congratulations on that. I am sure they will look at reassessing your dosage to get your red.blood cells at the right level. Good luck💜

  • My red blood count is always a bit low too and my haem said the hydroxy is probably the cause. Well done on your weight loss. I am also doing SW and have lost 10lbs so far in about 6 weeks. The hydroxy dosage is definately connected to your weight so it's worth speaking to them about it next visit


  • Well done on losing the weight! Good for you! Yes that would make a difference to the HU dosage and also HU depresses all cell counts - unfortunately it is not just tailored to platelets. Worth discussing with your haematologist.

  • Thank you for replies!! I'll see what they say when I go back on 15th September.

    Just about to set off for slimming club, only lost half a pound this week. If only food didn't taste so nice!

  • Hi Lizzie

    Can't add much more than the others. I have not had low red cell counts but my white count dipped a bit low and an adjustment in the hydroxycarbamide dose (less) put this right. I too understand that dose is based on weight, so hopefully on 15th you can discuss with doctor.

    Congratulations and well done on the weight loss! Good luck on the 15th. Liz xx

  • Hi

    Sounds like it could be the Hydroxy dose. One thing worth checking if you have been dieting is your ferritin levels too (iron) just incase they have got a bit low.

    Congrats on your weight loss, 2 stone is a great achievement.


  • its probably the Hu, they could give you some iron which would help the RBC but not affect the platelets or WBC

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