Finding ITP sub-specialists

Am considering switching hematologists and looking for resources to help find a "better" one. So far the only resources I can find are generic "find a doc" tools where nearly "everyone" treats ITP.

I really like my hematologist, for example, when was the last time a doctor called and didn't turf it out to a nurse or NP? But I suspect that she likely sees a small # of ITP patients and focuses more on the oncology side of her "business". Therefore I don't feel she always speaks with great confidence on next steps, full range of treatment options, etc.

So I would like to find someone who sees relatively "many" ITP patients and can therefore speak relatively confidently from experience on various treatment options. I know there aren't many ITPers to begin with and no one can speak 100% confidentially where the immune system is involved.

Bottom line: looking for a hematologist whose sub-specialty is adult ITP/platelet disorders and really "gets it".

Thanks!

I live in a large metropolitan area with two major university medical schools/teaching hospitals. I've found only one platelet disorders specialist in either system. When I saw him about 7 years ago for advice about how to make my N-Plate work better for me, he was stuck on the outdated view that splenectomy is a "cure" for ITP and insisted I should have one. It was the only treatment he would consider. I refused.

So, I returned to the open-minded, cooperative, willing-to-learn onco/hema I'd seen for 9 years before. He listens to me, takes my preferences into consideration, and never tries to force my hand.

You might be able to locate an ITP specialist (or at least a platelet disorders specialist) by contacting the PDSA organization directly. If you're anywhere near Boston or can travel there, Dr. David Kuter would be one great choice to see.

Thank you for the response and tips.

Also live near a large metro area (Phila) so decided to try the Blood Disorder Center at one of the “biggies” for a second opinion.

But I don’t plan to totally leave my “open-minded, cooperative, willing-to-learn onco/hema” doctor unless/until it makes sense.

Cheers.

I looked up that blood center. Wow, I'm amazed! How fortunate you are to have all those excellent choices! Wishing you the best luck in finding the right one for your situation.

Yes I am fortunate...many doctors and an org focused on blood disorders. But 4 months to get an appointment with *first available* doctor!

Going by what I have learned only, with any luck you yourself will be your own best Doctor in this. You just need the willing doctor that you already have in place to do what doctors do. As long as you keep learning and thinking about this, you will know what you want the doctor to do. Anyone not good at making these choices themselves is at a disadvantage. There are entire areas of choices that the doctor will not even entertain... You have more choices than the doctor. If you are good at making these choices, you may very well have the best doctor, already, as your teammate. Lets face it, we spend a lot of time thinking about our case. The doctor does not spend much time on our case. Who you going to agree with? The internet is not just for fixing your car.