Hematologist

I'm a newly diagnosed ITP patient, even though I now realize I've had this disease for over twenty years. My ITP, so far, has come and gone with no real problems or lasting affects. Until now, that is. Now that I've actually been diagnosed, I've done two steroid regiments with good results, but I'm have a really hard time finding a Dr. that I like and trust. You see, I live in Midland, Texas, which is out in the middle of nowhere in the oilfield. We usually end up with Dr.'s that are subpar because no one really "wants" to live here. It's very desolate. At any rate, I'm wondering now that I'm aware of my condition, couldn't I just see my regular GP and have him monitor my platelet counts and prescribe my steroids as I need them? I could always find a really good Hematologist in the meantime for checkups. I tried to see a Dr. in McKinney, Texas, (really liked him) but he basically said I was too far away (over 300 miles) to do regular monitoring. I'm sure this sounds like I'm being a bit petty to some of you, but our level of healthcare in this area really is horrible! Any and all suggestions and advise is greatly appreciated. Good luck and health to all who are suffering.
Most sincerely,
Deborah D.

Hi Debspike-- welcome to PDSA. You don't sound petty at all! Don't ever even think that. Having a doctor that you like and trust is absolutely essential. It makes all the difference in the world and can save you from aggressive or wrong treatments. What are your counts? Are you having bleeding symptoms? Prednisone isn't good long term, but maybe you don't have to be on any treatments if you've lived without treating for 20 yrs. I'm not an authority but I would go to my primary care doctor for ITP if that was the best doctor in town. You should talk to your primary care doctor to get the best answer. See if he/she is comfortable handling your care. And like you said, see the good specialist in McKinney once in a while. Perhaps the two doctors can work together.
Also educate yourself as much as you can! I like my hemo but in the end I make pretty much all my own treatment decisions. Even the best doctor doesn't always know whats right for you. And many are not up to date with all the treatments for ITP. So learn all you can and be your own advocate! good luck

I don't really think that PC's are qualified to treat ITP. They tend to overreact with counts on the lower end, and I'm not sure that they would properly know how to dose and taper steroids for ITP. It might be possible to have your PC monitor you and coordinate treatment with the Hemo that is farther away.
Why do you think you've had this for 20 years?

I had a GP who found a low platelet count twenty years ago and sent me to an oncologist. I had blood tests every week for six weeks but they came up on their own. No other problems til now. I had to have surgery six weeks ago and they found it then. Finally got the count up after two cancellations. More bruising do I know they must be down again. Not sure who to go to now.

It may or may not have been ITP 20 years ago. Sometimes counts drop temporarily due to illnesses, medications or vaccines. In that event, it's an isolated case of thrombocytopenia. Without labs over the past 20 years, it's hard to know for sure.
Seriously, see if your GP will consult with the Hemo. Many doctors will do that. Your GP could give you scripts for labs and if treatment is needed, he can call the Hemo. You could try having the GP manage it, but I'd be a bit leery of that. What are your counts?

I don't know what they were years ago. I started with 70 in May and by the time I was ready for surgery in December, I was in the 50's. It dropped to 34 at its lowest.

Those are safe counts for most daily activities, but not for surgery. How are they now?

Regarding tapering Steroids...I trust my GP above any other health care professional I have come across.

I've had both experiences with GP. My first primary care clinic thought I was okay with counts in the teens 12-14K. So I didn't treat my ITP for 2 years. Then counts dropped to 6K, I saw my first hematologist and he completely freaked out! He yelled at the GP saying they had put me in danger. I feel like he gave me too much prednisone for too long- plus was angry, domineering etc. And in hindsight I'm so GLAD I had those 2 years of no treatment because treatments are harsh and expensive.
My current hematologist is fine with my counts below 10K, no drama- he just adjusts the meds. He pretty much lets me taper steroids the way I feel most comfortable- he trusts me to handle it which is great. His team has gotten a bit hysterical if hes on vacation and they see my low counts. They insisted I get a platelet transfusion once- I refused. But I believe my doctor has talked to them because they don't do that anymore.

Now I have a new primary care team that did get upset when counts were 6K. They thought it was a medical emergency, I should go to the hospital. I explained that I was fine, refused treatment. Hopefully they will get to know me better in time. So all said, even though I live in the San Francisco area where there are tons of great doctors, I still have to work with the doctors, educate myself and make my own decisions- and they have to work together.

I personally would never treat with counts of 34 but thats just me. I don't tend to have bleeding issues. You have to look at the symptoms and not just the counts. Great that you have a primary care doctor that you like! I've had trouble finding one that I can talk to. They are sooo busy- its frantic, and thats a problem with living in a densely populated area. The primary care docs don't have time to get to know me, or don't take my insurance. I'm still working on finding one I like.

I live a 2 - 2 1/2 hours away from my Hemo - I have labs drawn locally and they e-mail them to her. I see my Hemo once a year and correspond via e-mail and phone when necessary. It can be done.
CindyAnn

Thank you so much. My only symptoms are fatigue and bruising so I can relate to your story. I will take your story and be able to apply parts to my case. I really appreciate your help.

I'm about to go get another count. Right before my surgery six weeks ago they were 135.

Thanks. I thought so too but my Dr strongly suggested that I seek local care. I basically got dumped. I'm working with my OB/GYN now since she did my surgery. I'm hoping for the best.

Thank you. You've been really helpful and pragmatic. It helps.

Maybe your counts will stay up. It's possible. I don't know...I'm still leery of a GP handling ITP. Usually, the first advice that we give new members is to find a good Hematologist. I've seen my fair share of bad Hematologists handing ITP and making a mess of it; and they should know what they are doing. What happens if you need a treatment other than Prednisone? If ITP becomes chronic, Prednisone will get old real fast. It's good to have a back up that you can rely on.

This is still all new to me so I'm playing by ear. As it goes, I'll deal with it with my GP until I need a hematologist. Finding one in this area that's good is going to be hard.