Polycythemia Vera: Just been diagnosed

@thli'm being cared for in a major academic institution which if I named it, it would garner instant respect..After mine was drawn it seems many weeks with no word..Then I had an appointment with my primary Doctor and she asked if ii wanted to know the results..Of course I said yes..It was positive...my hematologist didn't want to hear my questioning their delaying short, keep asking.

I was diagnosed with polycythemia Vera in February 2026. Currently on 1000mg of hydroxyurea and 81 mg aspirin daily.

I also have hypothyroidism - 20 plus years - and on 100 mcg levothyroxine daily. My TSH levels have been stable for years. Last result in September was 3.76. In prep for my annual physical I had the usual lab tests ordered last week. My TSH levels jumped to 6.86, out of normal range.

Reading up on drug interactions with HU, there doesn’t appear to be any issues with levothyroxine. I take the levothyroxine in the morning and the HU at night.

Has anyone with PV experienced problems with their thyroid?

@lindakay55 Honestly they don’t mention much. You can have neuropathy anywhere from PV. I went to an allergist for tingling in my face and she said she believes its from my PV?! It’s so rare and I don’t think they really know too much unless they’ve had multiple patients complain.

@nypara66
Thanks, So, its a part of PV itself and not the HU medication?
I wonder why doesn't my doctor tell me that when I inquired about my toes being numb?

@lindakay55 PV can cause numbing and tingling in hands and feet/toes. Also you will feel burning and stinging in your bones sometimes, mostly shins and sometimes it’s forearms for me. So many weird things happens from PV. With all the extra cells I just joke and say Don’t mind me, I’m just EXTRA!

Has anyone had their feet or toes get numb from taking HU?
My right two toes got numb last week and they did an ultrasound to see if any clots. None. But they didn't think it was the HU? Anyone experienced this?

@lindakay55 My diagnosis was 4 years ago. Started out with testing every two weeks and getting phlebotomies following most of the tests. Then started on hydroxyurea at different doses until my numbers stabilized.
Now getting monthly blood tests and taking 500mg 4x/week. Have not needed a phlebotomy for two years. Numbers are pretty stable but do vary some, like yours do from test to test. I find that being well hydrated when you take the test keeps the numbers in line.

Thanks.

Is it normal to see the HCT, HGB, and PLT all fluctuate when you are doing weekly tests for 8 weeks? I’m trying to determine if you see one move up a point or two does that mean it’s going to continue going up. Or might you see it go back down the following week without any change in meds.

Hello, they may increase the hydroxyurea to get the HCT down but normally you will require a Phlebotomy to control that. It is normal for platelets to fluctuate even while on the meds. Depending on age and other health conditions, your doctor will have a max safe high for that. Mine is 600. I’m 59 with no other Heath issues but diverticulitis. Baby aspirin, Hydroxyurea 5X a week and Phelbotomies about every 8-10 weeks.

Since PV diagnosis, I've done blood tests once a week for three weeks now, so three tests total.

The highest my results have ever been before HU meds was
HGB 16.7; HCT 50.5; PLT 418.

First test was only on Aspirin.
Second and Third tests were with both Aspirin and HU.
The HU dosage is 500 mg @ 4x week.

The first week my counts went down. HGB 16.7; HCT 50.3; PLT 381
Second week down more. HGB 15.6; HCT 47.9; PLT 356
Third week up a smidge. HGB 16; HCT 49.1; PLT 379

Do they go up and down before settling at some number range?

I'm having more blood tests every week for next five weeks before next doctors appointment.