Essential Thrombocythemia: Looking for information and support

I have periods of extreme tiredness whenever my red blood count drops. I have ET and am anemic. I had been on hydroxyurea after an anemic episode in the 80s. Had a bone marrow biopsy that showed my marrow wasn’t functioning. Was switched to Anagralide a year or so ago. Forgot to take anagrelide for a few days and my hematocrit went up to 27 which was the highest ever but so did my platelets. Now on a balancing act with platelets and hematocrit. Have had 4units of red blood cells in the last 3 weeks and feel energetic now

ET diagnosis - MPN
Hello all,
I was diagnosed with ET in 2020 via BMB and blood work. But looking back I had high platelets for over ten years but I guess my primary doctor thought it was due to fibros and heaving bleeding at the time. I had a hysterectomy in 2019 then my platelets went up instead of stabilizing. I recently did some bloodwork and my RBC morphology states something I never saw before: "slight basophillic stipppling, few elliptocytes/ovalocytes, moderately increased ploychromasia 2-5% schistcytes (fragments) few teardrop forms, megathrombocyes/giant platelets and my immature reticulocytes fraction is high at 32.
I am honestly not dealing with any changes well and I dont see my haemo until next week. Should I be worried?

Welcome @jaebless. It's so unsettling to see blood lab results before having a chance to discuss the interpretation with your specialist. While fellow patients on this forum cannot provide a medical interpretation or advice, we can offer support and experiences.

There are many discussions on the forum about essential thrombocythemia. I moved your post to this existing discussion
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

I did this so you can connect with other members like @bj87 @ttown @wiggins32 @nohrt4me @hdollar1 @lourdene @eileen11108 @kimberlyrd @garyinmo @marthajones @sherna09 @treeore @koryw208 and many more.

@jaebless, do you have a confirmed diagnosis of essential thrombocythemia?

Thank you: yes I did have a confirm diagnosis of ET in 2021 via blood and BMB

I was anemic at least 30 + years ago and was put on hydroxyurea and was told it would be for the rest of my life. I am 87 now. I began having low red cell in the last few years and have had numerous red cell transfusions. Other than the low blood count and tiredness I have had zero symptoms. I can do anything I want as long as I rest before I get too tired. I always feel absolutely normal except for tiredness

Hi Bj87. I am so curious how low your RBC was to cause red cell transfusions, if you don't mind sharing? My RBC levels are below normal every CBC for past 5 yrs. Not in normal range even one time. Doctors don't seem concerned, but iron infusions don't seem to improve RBC levels. The chronic fatigue is debilitating. I'm curious what was the reason / diagnosis causing the transfusions for you? Have they helped you? Thank.you so much and warm regards.

There is a nice ET support group on Facebook, that I found 3 years ago, with people from all over the world. Interesting to hear how diagnosis and treatment is handled in other countries

My hematocrit is what we watch. When ever it gets to 21or 22 I’ll get a unit of red blood cells. That usually gets me to 24 or 25. For a couple weeks. 27 is as high as it usually gets. A couple of weeks ago I was at 20 and got 2 units and it went up to 30 which is where the hemotolgist has always said he would be happy if he could get me there. At 27 or more I can function just fine. Still not for long with out resting. At 23 I am very tired. I am not sure if I have 2 problems (ET and anemia) or if it is all ET. I’ll ask tomorrow.
I hope this has been helpful.

Hi Bj87. Yes, this info is helpful. My HCT is in normal ranges. It's HGB is often low, RBC always low, RDW always high, and iron saturation % is typically quite low (4-6%), and Ferritin drops to 5 if not caught in time. I get iron infusions every 3 mos on average. I just found out that I have IgA deficiency and another immunoglobin is low, so referred to a immunologist. I had no idea about this issue, but now so many of my symptoms are making more sense. Guess I am feeling a bit hopeful now bc I may be a candidate for immunotherapy, which could contain my constant battle with infections, and other stuff. The fatigue is rough, which I'm sure for you too.

Just got home from the doctors. My hct is still 27 which is as high as it s ever been except when was 30 after 2units of red blood cells. Yay!!!
My wbc is 10.4, rbc is 2.99,
Hg is 8.8, platelets 23.8,
rdw15.5. I feel normal and strong and other than my kidneys being in stage 4 ,but stable , I feel great. I don’t seem to have any underlying problems as you. Yeah the fatigue is hard but that seems to be my only problem so I’m okay with that. Good luck with your journey