Platelets are too high: What can be done to find root cause?

I can do that however she is with the Florida cancer and research center.

I see her on Wednesday I will plan on asking her.

Sometimes it does take docs awhile to tease this all out. And sometimes the docs know but don't explain it very well, leaving patients not really understanding what they have or the treatment goals. And sometimes the meds take time to work. My platelets got to 800, I took 1 cap hydroxyurea daily for a year and levels were still too high in 600s. The doc added three more caps per week and I have been "safe and stable" in 400s for 5 years. Hugs to you until this gets sorted out!

For 3 years I was taking 2 7 days a week and 3 3 days a week. Got them down to mid 400s. We moved to Florida and the hematologist I am seeing cut them down to one them because of other things they could cause. They went up to mid 600. So now I am taking 2 a week do I get a blood draw on Wednesday. We will see what they are then.

It is just frustrating not knowing What the cause is. I sure don’t want a stroke or blood clots

GM I saw my hematologist this morning platelets still up. I mentioned to her about a diagnostic specialist and she doesn’t seem to know what that is so I guess I need to do some research. Can you tell me what I need to look for.

Hmm. A bone marrow biopsy is usually the gold standard for ET diagnosis. I wonder if asking these questions would help:

Do I have essential thrombocytosis?

If the answer is yes, ask: What are the treatment goals and what will you try if the hydroxyurea doesn't work?

If the answer is no or I don't know, ask: Would consulting with another hematologist be of help?

I have found that asking questions where the doc has to give you yes/no/I don't know answers prevents them from giving you a bunch of doc-speak answers that leave you confused about what's going on.

Do you have someone going with you to the doctor who can take notes? Sometimes that helps.

If you have a GP, I'd say that telling him or her that you are not getting answers from the hemo and want a secondary referral would be one way you could go.

Check out the MPN Foundation. There are heme docs who specialize in this type of care.
Blessings!

Thank you I have contacted my primary care doctor . I have thought about another hemo.

You have been so helpful . I just feel like enough is not being done to find the primary cause.

Have a blessed day

Hope you get some help from your GP.

And a different hemo might make a difference. My original hemo was knowledgeable, I agreed with her treatment goals and methods, but not real easy to talk to or interested in anything outside blood numbers. Her replacement is younger and much more attuned to any symptoms that could indicate ET progression.

I was in the ER with abdominal pain in November. They couldn't find anything, no spleen enlargement. My GP ran follow-up tests.

I was surprised the hemo mentioned it at my routine check-up, but she took quite a bit of time asking questions and eventually suggesting biotin, which has helped.

Thank you