Essential Thrombocythemia: Making treatment decisions

For everyone who says they are tired, how are you Ferritin and Iron Panel levels? If these are low you may need to take an iron supplement and that will help with the fatigue. Mine got so low that I was anemic, but before doing anything drastic, they advised me to take a supplement, which I did, and I felt better after a while. My iron level also went up to the point that it was high and I stopped taking the supplement. So I've been good for a while now. Monday is more blood work and a visit with the hematologist so I'll find out where I'm at as far as my iron level.

Hi everyone I just started taking hydroxyurea it’s only been a week. I’m on 500 one per day. I feel a little nauseous but that’s all. I’m confused my Doctor said I have ET but also said I have polycythemia Vera. I have been reading and from what I have read you either have one or the other but not both at the sametime. I’m going to discuss this with him on my next visit. Do any of you have any imput on this?

Hi @winmil99. Essential thrombocytopenia is part of a blood disorder group referred to as Myeloproliferative neoplasms (MPNs) which are potentially life-threatening blood cancers that happen when your bone marrow makes too many blood cells. It can be red or white cells or in your case it is too many platelets occurring from an acquired mutation to your JAK2 gene. Too many platelets can run the risk of strokes, pulmonary embolisms and DVT clotting and death. So it is nothing to take lightly if treatment is required.

The lumbrokinase or nattokinase are supplements which can thin blood and prevent clotting. However, if you have a mutation, this allows proliferation of cells due to the mutated gene. Just thinning the blood won’t stop the proliferation of the damaged cells. So that is something to consider. Some of these treatments can be lethal, cause very serious side effects or interfere with other medications. Most are not regulated or meet any specific standards of quality or potency.

I’m sorry for the loss of your friend to AML, but I wanted to clarify that just having ET can increase the potential of developing AML. It most likely wasn’t the HD that caused it in your friend.
HD has been around for decades and it has a proven track record for helping control blood conditions like ET and PV.
If you do end up requiring this drug, I hope that you’ll reconsider because it has been a lifeline to many people, helping them to live a long and healthy life.

I’m sure you’ve been doing your own research but thought I’d toss out another good article for you.
https://www.healthline.com/health/cancer/myeloproliferative-disorders
~~~
https://nattokinasehearthealth.com/lumbrokinase/benefits-and-side-effects/
In any event, your hematologist would be the best source of information regarding your platelet levels and to help you with the choice of medications. Have you discussed using an alternative medication for your ET?

I am on hydroxurea for 4 months. 500 mg daily last blood work plates were 297 . I have had some side effects non to bad and random. Some burning on my tongue my normal oily hair is now dryer so nothing bad. I take my meds at night and go to bed so I have not been sick at all. My main thing is I am tired but the meds are making my red cells low. I take lots of vitamins so not sure if that helps. No hair loss but noticing more gray hair. Good Luck

Hi, 73 17 years ET, on HU 8months now just over 600. 1 x 500mg daily extra 500mg every second day. 1 x asprin daily. Lots of meds for diabetes type 2. Just had Ultrasound on thyroid. Have total 13 nodules on thyroid, some quite large. Now having Nuclear ultrasound not until 6th October. Really worried about this.
Suffer fatigue, dry skin and hair thinning as well. Also sun sensitivity.

Hi, 73 17 years ET, on HU 8months now just over 600. 1 x 500mg daily extra 500mg every second day. 1 x asprin daily. Lots of meds for diabetes type 2. Just had Ultrasound on thyroid. Have total 13 nodules on thyroid, some quite large. Now having Nuclear ultrasound not until 6th October. Really worried about this.
Suffer fatigue, dry skin and hair thinning as well. Also sun sensitivity.

Ugh, it's always something, isn't it? I had a thyroid biopsy a few years ago. The biopsy team said these things are fairly common and almost always benign, so hope this will just be a small blip for you, too. My GP tests thyroid function every so often, and it's normal.

Have had a benign lump in thyroid for over 10 years, slow growing. Didn't have nodules prior. It is a bugger this getting old, so much goes wrong. Oh well, life is great. One day at a time. My thyroid function is also normal.