Essential Thrombocytosis symptoms

Posted by lynn22 @lynn22, Apr 5, 2023

Having had high platelets since 2017 and doctors could not find a cause I paid to see a haematologist and I was diagnosed with ET in 2019. With a platelet level of 723 I was put on baby Asprin but unfortunately it did not suit me. I was then put on Clopidogrel but had an allergic reaction to it. I have refused to have a biopsy so far but said I will if levels go over 800. The haematologist made it quite clear that I am at a high risk of having a stroke. So I am taking Arnica homeopathy twice a day to thin the blood which helps the headaches which I have suffered with for years and take 2 paracetamol a day, usually when I wake-up as that’s when I get most headaches and sometimes it is like having a massive hangover. I also get tired and lightheaded and since January I am suffering with constant tingling hands and feet which according to the internet is another side affect. But as of two weeks ago I have tingling lips and tongue which is not listed as a side affect and I am wondering if anyone else also has these symptoms tingling symptoms. Having tried to see a doctor the surgery have said I can have a routine appointment which is weeks away. My doctor has agreed that I have a blood test every 3 months to monitor, at the moment it ranges from 750 to 800. Any advice gratefully received.

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et1055 | @et1055 | 4 days ago

In reply to @stickball1 "My platelets were over 600 and approached 1000 before being diagnosed with ET /JAK2. Initial dosing..." + (show)

We all respond to HU so differently!!i started out at 1129 and after 6 months it has only come down to 615. I envy your results😊

janemc | @janemc | 3 days ago

In reply to @et1055 "We all respond to HU so differently!!i started out at 1129 and after 6 months it..." + (show)

But that's almost a 50% reduction, et1055!

Congratulations, especially since your initial count was so high.

For me (with the very stubborn MPL driver), it took 14 months of HU to get from the high 700s to 505.

I'm grateful my oncologist considers 505 acceptable, and that his incremental dosing meant no side effects from HU.

nohrt4me | @nohrt4me | 3 days ago

In reply to @et1055 "We all respond to HU so differently!!i started out at 1129 and after 6 months it..." + (show)

Mine were in 800 and went to 600s in a year if HU 500 mg/day. Dose was upped to an extra cap 3 × per week and now in the 400s, where it has stayed for past 5 years. Results can be slow for some of us. Don't lose heart.

mdterp76 | @mdterp76 | 2 days ago

In reply to @janemc "But that's almost a 50% reduction, et1055! Congratulations, especially since your initial count was so high...." + (show)

My oncologist is also happy with my numbers in the 500s and uses incremental dosing too. I was at 800 two years ago; now in the 500s. Overall, blood work big picture is better. I take baby aspirin in the AM and PM, 500 mg of HU 4x a week, and a daily iron supplement due to low iron but not anemic. I have no symptoms; just high platelets. Friday, I have corneal surgery at Hopkins and I am off baby aspirin, then off HU during recovery. I am nervous about being off the meds. Last year I was nervous being on the meds. Trying to stay calm and live my best life at 71 with 5 wonderful, young grandchildren. My best to all!
Karla

kapow | @kapow | 2 days ago

In reply to @janemc "But that's almost a 50% reduction, et1055! Congratulations, especially since your initial count was so high...." + (show)

It gives me hope that maybe my platelets will settle down! I too am MPL driver, and have had my dosage of Hydroxyurea altered frequently, since my platelets are not responding so well. Right now I am still over 600, so my dosage was increased to 500*2 5 days a week and 500 on the weekend. Last time that the dosage was this high my white blood cells dropped so much that they had to reduce my dosage. Prior to this latest increase I had been 500*2 on the weekend and 500 mg the other 5
days. And prior to that it was 500 mg 7 days a week. (That was after my white blood cells dropped) Seems to be a real balancing act ….i hope we get it right soon.

cariadk | @cariadk | 2 days ago

In reply to @et1055 "We all respond to HU so differently!!i started out at 1129 and after 6 months it..." + (show)

Mine were similar levels but it took longer. My doc is ok with me around 600 as am I. I didn’t like my neutrophils being so low when my HU was increased. Now they are in a good range
I take 1000 m-f and 500 on S/S. And bbasprin

1pearl | @1pearl | 2 days ago

In reply to @nohrt4me "Mine were in 800 and went to 600s in a year if HU 500 mg/day. Dose..." + (show)

Hi again nohrt4me,
I like the idea idea of starting slowly if it is found I truly do have ET.
I have one question for you to please explain to me. I know you have had ET for a while and you also mentioned that your dad had it. My question is how your Dad and you both had it since my O/H said it was not genetic but rather and acquired gene mutation. I still do not have any of the gene mutations identified in my case nor any symptoms and now I have been diagnosed with White Coat syndrome and not hypertension which I already knew.
I do believe my O/H does treat on platelet number alone. I wonder why my platelets are decreasing on there own with no treatment. She did not answer that.
Thanks so much for listening and explaining so much to me.

nohrt4me | @nohrt4me | 2 days ago

In reply to @1pearl "Hi again nohrt4me, I like the idea idea of starting slowly if it is found I..." + (show)

Some families do have several members with ET or another MPN. Researchers think that the mutation itself is not inherited, but possibly a tendency to mutate if exposed to the same triggers is inherited.

Some decreases in platelets are not significant. Docs are looking at the average over a year or two. Mine usually stay between 415 to 475. Once every year or two, I might spike into low 500s. If counts stayed in the 500s and started spiking into the 600s, I expect my HU dose would be increased.

But the docs are looking at where your platelets are trending over time, not worrying about small up-and-down fluctuations.

I don't know what kind of drop in platelets you're seeing.

1pearl | @1pearl | 2 days ago

In reply to @nohrt4me "Some families do have several members with ET or another MPN. Researchers think that the mutation..." + (show)

Hi and thanks for responding. I have only had platelets checked for less than one month. On there own they went down 25%. I do not have prior data to compare with offing enough.

janemc | @janemc | 1 day ago

In reply to @mdterp76 "My oncologist is also happy with my numbers in the 500s and uses incremental dosing too...." + (show)

Heartfelt best wishes to you! May your procedure and recovery go smoothly.

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