Hemotologist Question

I am wondering if I need to find a new hematologist or if what I am experiencing is normal. My doctor is nice personality wise and I feel like I can ask questions, but at this point I think she is becoming to aggressive with treatment. My levels over the last few months range from about 75 to 110. They seem to fluctuate in that range most of the time. My latest count was 104. She wanted to put me on steroids today. I didn't agree since I knew I was in the safe zone and steroids have horrible side effects. It seems every time I go in she doesn't really know how to say you are doing fine we will just watch it for now. In the past I had iron deficiencies and she pushed me into gi testing and gave me a pill for mild gastritis even though my gi doc said it wasn't necessary. Is it normal for the hematologist to try to "fix" a mild problem?

I agree your doctor is overly aggressive. Treating when counts are 75-110 does not make sense to me.
Erica

Not normal--your hematologist's urging you to have treatment now.

How did you get your platelets so high? (Most of us are drooling over your numbers!) What treatments have you had and how long ago?

I wouldn't start treatment either. My hemo won't consider treatment until your below 50, he allowed me to have gallbladder surgery when I was at 65.

My hema does not treat until below 30. I believe that is pretty standard. Maybe your doctor does not have alot of experience with ITP and is being overly cautious. Do you have other health problems that might affect the way she feels you need to be treated?

When I was having a count going between 85k & 125k I didn't even see my hematologist - that lasted for a number of years. When a tetanus booster took me out of my little "remission" then I started back with the hematologist.

At a count of 104k I wouldn't let 1mg of prednisone past my lips!

Unless you're a bleeder, you could go much lower without needing treatment according to most hematologists. It's great they we have steroids available, to bring up unsafe counts, but they can really cause trouble, like hip necrosis, when used over long periods.
Norma

Thanks everyone for their comments. I have not had any treatments other than a low dose of steroids when I was pregnant.

The first hematologist I saw five years ago didn't want to see me again with numbers in the 120 range. The only reason I started going to see the hemo 8 months ago is that I was also very anemic. She scared me into having a colonoscopy and endoscopy to try to find the bleeding. We never really found the source. After two iron infusions I was no longer anemic and my platelets have been stable. I go for blood work once a month. As far as I'm concerned if the numbers stay the same I am not treating.

I feel blessed that my case is mild compared to many other people.

It's definitely worth looking into. I switched from an aggressive hemo who was always putting me on prednisone and pushing for a splenectomy a few years back.

Like those above, a lot depends on your history and symptoms. I don't have much issue with bleeding and have had mostly consistent counts. My current hemo won't treat unless I go under 20K or suddenly have bleeding issues/concerns. I've had this long enough to know what to watch for. The past two years has been heaven with only 6 month checkups. Out of sight, out of mind.

Interesting. My docs check my hemoglobin. Put me on iron supplements after 2 bleeding incidents from AVP. My platelets so far as I know run around 100,000, so that's good I think. I am 64, was first diagnosed back in 1995 with ITP. Three years ago, in a different state, bone marrow again, told me I had MDS. Had had 2 bleeding incidents within about 2 months that required transfusion. Due to the economy, moved to another state, ahem, better job. Doc there said "exotic" patient, and was planning more tests, when wham, economy again, so am in another state now. Doc here says I don't have MDS, and if I do, it is mild. There are no hematologists here that specialize in platelet conditions. But I have had 2 bleeding incidents, caused by AVPs, for which I have had transfusions, one outpatient, one in hospital. Since then, mild bleeding from colon. Soft diet, take it easy, till it clears up. But I do have slow thyroid, so am on med for that.

Omeprazole for gut, iron for hemoglobin, levothyroxine for thyroid and irregular heart.

Anyone else been told that they have pernicious anemia when they mentioned ITP/MDS?

I've never even seen my platelet count get as high as 104k. I'd LOVE to see that. Mine was around 95k when I first became aware of a problem, dropped to 4k within a year after that. I haven't been above 67k since.
Enjoy the 'high' platelet count!

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Cate wrote: Interesting. My docs check my hemoglobin. Put me on iron supplements after 2 bleeding incidents from AVP.

What's AVP?

I have been tested for pernicious anaemia but was negative. As it's another autoimmune thing it wouldn't be surprising to have it really.

Redhead,
According to the American Society of Hematology's latest guide lines you don't even have ITP unless your platelets are below 100,000. And they don't recommend treatment until the platelets are below 30,000. Here is the link. You could show it to your present hema and see what his reaction is!

www.hematology.org/Practice/Guidelines/2934.aspx