Im 64 and my blood platelets have been in the low 530-550 range for yr

@mrkevinl
Welcome to the forum. I think every single person who posts here can relate to the anxiety we feel while they are trying to figure out why we have wanky blood (new clinical term 😉). Your story is very relatable.
It sounds like you are moving in the right direction to get some answers. A hemotology referral seems like the right specialty area. Bone biopsies are used to rule out some blood abnormalities or confirm others. They provide a lot of useful information to the clinicians and I bet that after the results are in, she will have a definitive diagnosis. Then you will know what you are dealing with and what the treatment options are.
Waiting is hard. Anxiety will actually make you feel sick when your white count escalates in response. Try to relax. Try to quit reading about all the scary stuff Dr Google comes up with. Do things you enjoy. Be around positive people and keep your thoughts in a positive place. Modern medicine is pretty remarkable. Seek out the best clinicians to treat you, once you know what you’re dealing with. Ask lots of questions (I write mine down). Stay positive.
I wish you the best possible outcome. Let us know what you find out.
Patty

Thank you Patty for your reply. I am trying to stay positive and keep my fingers out of the search bar.

I feel your pain. I have a hard time with that too.

When first diagnosed, I panicked and thought the end was near.

Now I know, others have been living with this for 10/20/30 years.

You will get invaluable support here.

The waiting is the hardest part. It sounds like you are in great hands! Avoid the rabbit holes! They make your journey harder. Here we are all on similar journeys and will try and help and support each other.

I had low platelets at 130 and got an appointment with a hematologist. My treatment of chemo and meds ended and i was bugged. I donated platelets for 25 years, so i was nervous. A bone marrow biopsy was done. I got new that the result plus a genetic mutation led to Leukemia. The marrow is the bodies truth and where our Dr./scientist shine. They love helping us.
BUT, I do not have it now. I have world class Drs checking on me. I agree to stay away from Dr. Google and rabbit holes. I am a 63-year-old female and am living life a day at a time.

Hi Kevin --
Recently diagnosed with ET with numbers close to yours. Have you had genetic testing? It turns out I have a genetic mutation JAK2, which is involved in about half of ET cases (according to what I read here). Started taking HU daily with no side effects & my platelet count has dropped to 340. Seeing my doctor this week if it's looking good medication might be reduced to fewer days per week.

The diagnosis was scary but I'm feeling much more positive now. Just read a post here by a guy who was diagnosed 30 years ago!

All best.

Thank you for your reply & for sharing. It sounds like you & I have the same problem. No I haven’t had genetic testing. I don’t know if that would provide anything useful. I have heard this disorder is very rare. I stated at 527 after my bone marrow biopsy. I started with HU 500mg daily for a month & my platelets went down & up over 4 weeks. Doctor told me to try 1000mg per day & now my results are down to 411. I’m happy with that at soon to be 65. My doctor said that she thinks the outcome will be ok & that majority live normal lives with ET.

When my platelet count was rising slowly but steadily over several years, my nagging concern was that the cause was either inflammation or an early sign of cancer (ovarian cancer, which my mom had), which hadn't yet been identified. So, in a way, identifying the gene mutation was a relief: for me that meant the platelet count, in itself, was the problem to treat. With HU500 the numbers started dropping right away -- & so far, so good. Learning that it's a chronic, treatable condition & that the majority live normal lives was obviously also a relief; my primary care doctor said he's had (or has) 20 patients with this & all are doing very well. I'm going to re-read that post by the guy who's had it for 30 years.

Are you tolerating the HU well? It was horrifying to read about all the possible side effects (I imagined having all of them), but I've been very lucky, none at all.

Cheers & much hope to you on your journey!

So far, I have no side effects to the HU. It is very uplifting to read the people that are doing well with this disorder. I wish you the best😊