High platelet count: What does this mean?

I have been going to a hemotologist for about 6 years now....

Sorry, that wasn’t clear to me from your post….

I'm so sorry. This must feel like you are getting the runaround. I hope you are in a position to get a second opinion.

I have to wonder if maybe the MDS was a misdiagnosis. Some of these blood cancers and disorders are tricky.

I also have to wonder why your doc feels you need both anagrelide and hydroxyurea. Dad (who also had ET) was on both meds, but only because a) his platelets were over 1,000 and b) hydroxy alone wasn't reducing them enough. He eventually was on only hydroxy.

There are other factors that affect stroke risk, such as your age, the mutation that's causing the ET, and whether you have ever had a clot before. You might ask your doctor if, given those factors, you could try going off one of the meds.

You might also ask your doc if taking a daily baby aspirin daily would help reduce stroke risk so you don't have to take so much of the other stuff.

I was diagnosed with ET back in August following an emergency gall bladder operation. My platelets were 1,700! I had a bone marrow biopsy to confirm the diagnosis. Hematologist was questioning why my high count had not been discovered earlier and I questioned this with my new primary physician and she said platelet counts are not covered in routine blood test as most insurances don’t cover it unless given a reason for it.

I am in my 70’s and have been put on HU 2x a day 1000mg and low dose aspirin . Dr says I will be on it for life due to my age. My platelets are down to 330 range and holding. Side effects of HU so far have been minimal. I just wish there wasn’t a 10-page list of possible side effects and long term side effects!

I do not like being on meds and my primary has taken me off my thyroid meds - hypothyroidism- diagnosed 15 years ago. We will follow up in Feb to see how I am doing without them.

I do have confidence in my hematologist and would recommend if you are questioning your doctor, do seek a second opinion. As this is a blood disorder, a Hematologist would be best if that is available for you.

What is an MPN? I go to a hemotologist and I am on Hydro and Anagelide.

The way I understand it MPN specialists are hematologists with sub speciality of MPN’s such as ET, PV, Myelofibrosis, etc. ET is Essential Thrombocytosis or Essential Thrombocythemia. There is a National list.

I hope you get the answers you need. Make a list of questions when you see your doctor.

Eileen

Hi bikalydy973,
I have seen my GP every six months because I have hypertension. I have labs done before seeing him….platelets were shown on all labs. So it seems routine to me. I am 78 so on Medicare and it pays for labs with proper diagnosis codes.

I was puzzled about stopping thyroid medication.
I was put on Synthroid about 20 years ago because I had a goiter and many nodules…the endocrinologist told me once on it I cannot get off, It works in place of my thyroid working, I have since changed to a younger endocrinologist who said nothing about stopping it. Next time I see him I will ask.

I was diagnosed with ET JAK2 in 2022. I was started with 500 mg HU, had daily headaches. I am on a blood thinner for AFib so she was able to have me stop for a few weeks. I started again taking 500 mg HU every other day, Platelets are down to 434 so I am doing monthly labs to check count. I still get headaches but less,

I agree with you that I hate taking HU with all the possible short and long term side effects.

Best wishes to you, Eileen

I am on Hydrea and it makes me so fatigued. My hemotologist doesn't know of anything else to do for me. Thankfully, I am retired and now single as I could never keep up a job and take care of a household with this fatique. I tell my doctor I feel like a wet dish rag...droopy. I have to lie down quite a bit. My platelets are running anywhere from 550 to 750 after being on this drug for a number of years.

My platelet count won't come down and stay down. On occasion, it will be 330 but jumps back up as I have blood tests every 2 weeks....have for years now. I also take a low dose aspirin. I did a bad thing recently and really needed a break from the drugs. After two weeks, I was starting to feel like myself again. It was great. Of course, my hemotologist doesn't know I did it but a nurse once told me that we have to be advocates for our own selfs sometimes. I'm 69 and don't look forward to feeling exhausted the rest of my life.

Darlaburley….
You are on two different drugs each with own side effects. Out of curiosity what dosages are you taking? Some people are advanced to Pegasys injections. It is expensive though.
Eileen