How low has your WBC count been since on the hydrea medicine. I have E.T. I'm know that taking the Hydrea medicine our counts RBC & RBC will not bee in normal range & often low. Looking back the lowest my wbc count has been 2.8. Today I just received a call from the GP. nurse to inform me that they are low. My next Hemo Dr. app't is in 4 weeks. Monday, I am going to ask to see him earlier.
I wish I didn't receive that phone call, and then keep me concerned over the weekend.. Tired, fatigued, yes, all the time even when my WBC counts were higher.
If anyone has experienced lower than 2.8 WBC count, and did your Hemo Dr. prescribe something?
Even though we all eat very healthy, all the over the counter products for iron will not help.
I once confronted my Dr. a long time ago, about what if, the WBC counts became to low, his reply was it will be addressed at that time. I presently do not know what my platelet count is. Monday I will go to the GP dr. office to pick up my cbc diff report that was done last week.
Maybe I am just jumping the gun, but still I could have done without that phone call. My GP practioner is very familiar with Essential Thrombocythemia and the medicine, so he is up on that knowledge.
My lowest White cell count has been 1.4 with neutrophils at 0.7 at which point I took a short break from Hydrea but my platelets doubled to over a million. I have spent many months - if not years with the white cell count ranging from 2 to 3. It was a tightrope walk between keeping platelets down and white cells up and hydrea dose was sometimes altered accordingly. Nothing else was prescribed. You don't say what dose of Hydrea you are on - I was taking up to 4 per day (2000mg). Low WBC - and especially low neutrophil count means we are liable to infection so keep away from people who are obviously unwell if you can. I got skin infections too. I am now taking jakafi and the white cell count is steadily normal!!
Thanks for your reply. I take 2 Hu l,000mg 7 days...Do you have E.T. and are you JAK positive. I have not paid to much attention to the jakafi meds, & don't know if it applies to E>T> patients?
I had ET for 17 years and now progressed to MF. I am Jak2 positive. Jakafi is not approved for ET I don't think but it is a matter of getting into a trial.
When I was on Hydroxycarbamide my white count never rose much above 2. When Interferon was introduced as well both the whites and neutrophils went so low that I had to carry a card and watch for any sign of septicemia very frightening I thought. So my hem decided it was time to just take Interferon as all the Hu was doing by then was lowering anything but the platelets. I have now been on just Interferon for over twelve months and all my counts have recovered I even had a count of 5 in the whites and my platelets are not now malformed. So for me the difference was made by changing drugs but we are all different. Take care especially around others who are ill and good luck with it all from Malaika
Did you have a lot of side effects when you started the Interferon? How long have you had E.T? As for the platelets, from my reading on the subject over a period of time, our platelets are malformed ,and not the small round disk shape of normal platelets should be.
I did have side effects when I started, the first injection was the worst for the flu like symptoms but has not been since. I also had a little trouble with nausea but was given medication for that and my hair thinned somewhat. But now my body is used to the Interferon and although I do feel a little fatigued the next day not as bad as when I was taking 1500mg of Hu daily. My hair has now got much thicker and possibly better as it also thinned on the Hu. You are right our platelets are not "normal" but mine are now no longer huge as the MCV is exactly where it should be so I hope they would behave a little more normal!
I hope this helps a little anything else you want to ask please feel free I will help if I can.
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