Essential Thrombocythemia: Looking for information and support

I am 25 years old and have just been diagnosed with both ET and Crohn’s disease I wonder if the two are liked I am unable to take meds for ET because of the Crohns and have been told I need a bone marrow biopsy.

Hi there I’m 25 and just been diagnosed with Crohns and ET I’m on meds for both it’s worring being so young.

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

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.

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.

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

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.

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

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

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?