Essential Thrombocythemia: Looking for information and support

Hi Ginger. It sounds like you're going through some significant adjustments. I'm glad you have the courage and strength to finding solutions in care and feeling well again. I am curious what was the "aha" moment when docs decided to do the bone marrow biopsy? After 5 yrs of severe iron deficiency anemia, with so many life-altering symptoms that I had to retire, even though my plan was to work another 2 yrs (just turned 68). I've had a lot of tests, but still no diagnosis of any kind. I've implored my doctor to check my bone marrow, and nothing. Also, you mentioned about the numbness/tingling in leg and feet, and I totally relate to these symptoms. When my iron drops, I have these very things 24/7, but much more in the evenings and especially when I'm lying down...sleeping is sometimes a challenge. Just days ago, I was diagnosed with peripheral neuropathy in both feet, but worse on right side. I suppose they will do more tests. My hands and right wrist are this way, too. So much worse now after 5 yrs of IDA. Mine seems to be progressing to now neuropathy in my shoulders, especially right side. I am so frustrated that they won't test my bone marrow. Iron saturation % is always low (around 5). Oh, I have swollen tongue with small lesion on edge all the way around (but only when iron is low). Do you have any eye symptoms? Ugh. One of the most challenging symptoms when iron is low.

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Hi Wiggins32....My nurse practitioner was the person who found the causative factor of my high platelet count by doing a JAK2 blood test. That took about two weeks for a diagnosis to emerge and a gene mutation was the causative factor for the high platelets and low iron for me. From there, she referred me to a hematologist/oncologist and he is the one who ordered the bone marrow biopsy. He did that to make sure that was all that was going on with my elevated blood platelets (no other type of cancer). I am fairly new to this forum and this diagnosis - ET or Essential Thrombocythemia, so I am learning as well. Be your own advocate.....my Primary Care Physician blew me off when my platelets were high - over 600 - last March - said it was no big deal. I am so glad that I happened to "only" see his nurse practitioner in August - she hit the ground running looking for and testing for any reason that the platelets were over 600. She is the one who ordered the JAK2 blood test. My oncologist was amazed with her. She was methodical with her approach and he said she did everything right. My iron was low and she put me on a low dose of supplemental iron. I was so blessed and will always be so grateful for her aggressive approach. I am doing much better now - had an initial outbreak of mouth sores from the Hydroxyurea they had prescribed. Was taken off for about 5 days and now back on for every other day and doing nicely so far. Platelet count is in the normal range now. Hoping you get the clear diagnosis soon.
Ginger

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I am really sorry you are having trouble with HU. Could you ask yr doc about anagrelide? Or Pegasus?

Some people just can't take the HU.

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Hi Wiggins32....My nurse practitioner was the person who found the causative factor of my high platelet count by doing a JAK2 blood test. That took about two weeks for a diagnosis to emerge and a gene mutation was the causative factor for the high platelets and low iron for me. From there, she referred me to a hematologist/oncologist and he is the one who ordered the bone marrow biopsy. He did that to make sure that was all that was going on with my elevated blood platelets (no other type of cancer). I am fairly new to this forum and this diagnosis - ET or Essential Thrombocythemia, so I am learning as well. Be your own advocate.....my Primary Care Physician blew me off when my platelets were high - over 600 - last March - said it was no big deal. I am so glad that I happened to "only" see his nurse practitioner in August - she hit the ground running looking for and testing for any reason that the platelets were over 600. She is the one who ordered the JAK2 blood test. My oncologist was amazed with her. She was methodical with her approach and he said she did everything right. My iron was low and she put me on a low dose of supplemental iron. I was so blessed and will always be so grateful for her aggressive approach. I am doing much better now - had an initial outbreak of mouth sores from the Hydroxyurea they had prescribed. Was taken off for about 5 days and now back on for every other day and doing nicely so far. Platelet count is in the normal range now. Hoping you get the clear diagnosis soon.
Ginger

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Thank you for your comment about daily living tips to help fight off infections.

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I was diagnosed with ET at 27. I had been having unusual, extensive bruising and severe fatigue, my doctor did labs and referred to hematology for high platelets. I was misdiagnosed with Von WillIebrand Disease initially and went for a second opinion. I do not have Von WillIebrands, but do have ET, JAK2 positive, and platelets climbed to 700. I had a bone marrow biopsy which only showed ET. It is a life altering, terrifying diagnosis to face, especially at my age when there are hardly any studies to be found on people my age with ET. Life expectancy is a very scary unknown for me, especially with 4 little kids that I would love to be here for for a long time! It's terrifying to think about not being here for them, but stressing over it will do nothing, so I try not to. I was started on 1 baby aspirin a day and have labs every 3 months. My hematologist followed me through my last pregnancy, which was the first pregnancy with ET that he or my high risk OB had ever managed! It seems to be very rare to be diagnosed as young as I was. I was increased to 2 baby aspirin a day immediately after delivery, and have kept to that regimen since. I am now 31 and have had no complications regarding the ET. My hematologist plans to start HU when my platelets hit 1000. Luckily in my pregnancy my platelets went to a normal level (pregnancy naturally lowers platelets) and they have stayed around 400 since

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Hi Wiggins32....My nurse practitioner was the person who found the causative factor of my high platelet count by doing a JAK2 blood test. That took about two weeks for a diagnosis to emerge and a gene mutation was the causative factor for the high platelets and low iron for me. From there, she referred me to a hematologist/oncologist and he is the one who ordered the bone marrow biopsy. He did that to make sure that was all that was going on with my elevated blood platelets (no other type of cancer). I am fairly new to this forum and this diagnosis - ET or Essential Thrombocythemia, so I am learning as well. Be your own advocate.....my Primary Care Physician blew me off when my platelets were high - over 600 - last March - said it was no big deal. I am so glad that I happened to "only" see his nurse practitioner in August - she hit the ground running looking for and testing for any reason that the platelets were over 600. She is the one who ordered the JAK2 blood test. My oncologist was amazed with her. She was methodical with her approach and he said she did everything right. My iron was low and she put me on a low dose of supplemental iron. I was so blessed and will always be so grateful for her aggressive approach. I am doing much better now - had an initial outbreak of mouth sores from the Hydroxyurea they had prescribed. Was taken off for about 5 days and now back on for every other day and doing nicely so far. Platelet count is in the normal range now. Hoping you get the clear diagnosis soon.
Ginger

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I was diagnosed with ET at 37 with platelets at 890. I started on aspirin only and was monitored every 3 months. I never had any symptoms. My hematologist told me he would put me on chemo if my platelets got to a million. That never happened and I am now 67. I was very afraid initially. But I adjusted and over time my platelets stabilized in the 500s. Very recently I learned I am JAK2 positive so I started on Pegasus 2 weeks ago. So far no side effects. So just keep enjoying your family and try not to dwell on this. Who knows what will happen to any of us!

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