so... that's it, have a nice life?

I had my second visit with the hematologist today, and as is often the case, I'm more confused now than I was when I went in.

a little background, I'm 26 and had a horrendous course with another autoimmune disease, ulcerative colitis, when I was 16-20. I spent weeks at a time in the hospital, took every drug on the market and some experimental ones, had nine surgeries, six months of IV feedings, and ended up with a permanent ileostomy. I have been blessed to have been really healthy since then, with just a couple ER trips for dehydration. But my body is clearly no stranger to autoimmune disease.

My platelets were fine until 2008- I had a CBC for the first time in a couple years, and they were 65,000. No one mentioned it to me. In 2009, a CBC in August put them at 53,000 and one a couple months later came back at 80,000. Both my OBGYN and colorectal surgeon really freaked me out by acting like I needed to go see a hematologist immediately or I might drop dead.

At my first hematologist appointment last December, the fellow was ready to call it ITP immediately, particularly because of my history of autoimmune disease and positive ANA. The hematologist says "well, I need more data (blood draws) to make up my mind whether to call it ITP or not." Another CBC came back at 80,000 and I got a phone call from the fellow afterwards telling me I had ITP.

I've had two more CBCs since then, which came back at 110,000 and 105,000 respectively. Today I saw the hematologist for the second time and he was basically like "well, they're trending up, and really, you don't meet the diagnostic criteria for ITP since they're now over 100,000. I really doubt you'll ever need treatment so just get them checked once a year by your primary care doctor. If you have a few in a row that are over 100K, you don't need to get them checked anymore... have a nice life."

So, now I don't have ITP because they went up? Huh? And even though my platelets were 53,000 just six months ago, I should only get them checked once a year?

Don't get me wrong, I fully understand that none of these counts that I've had are dangerously low. I understand that I could live the rest of my life with a count of around 80,000 and be just fine. I would certainly prefer it that way, I've had more than my share of prednisone and prefer never to go there again. I also understand that there is no test for ITP and that diagnosing it is not an exact science. But c'mon... do I have it or not? I'm so confused. If it's not ITP, what is it? Just my platelets randomly getting low for a couple years for no reason? Is it really a good idea to wait a whole year before getting another CBC? This is a hematologist with a zillion awards at a hospital ranked in the top 10 nationally, so it's not like I could find a better hematologist in my city. Maybe I need one at a smaller hospital who would actually take time to talk to me and explain this?

Hello. So the question is: do you have ITP or not? Based on past counts, I would say yes. Just because counts go up doesn't mean you don't have ITP any more. If you'd only had lower than normal counts for a few weeks, I would say that you had temporary thrombocytopenia, not ITP.

However, I don't know that it would be necessary to have counts done any more frequently than once or twice a year. I've been in remission for 5 years and have had counts in the single digits, but I only see my hemo once a year. I do have quarterly CBC's, but those are more for purposes of Lupus, not ITP. If you have an increase in symptoms such as bruising or petechiae, I wouldn't hesitate to call your GP and get a count done ASAP.

I have to agree with Sandi. I went 15 years with counts around 50K, with CBC's and hemo visits every 6 months. On a few occassions, when I noticed symptoms, I might call and have them run a CBC in the office just to be sure, but otherwise, I felt like I got the pat on the head and was probably the wellest person they saw that month.

However, having the established relationship with him made all the difference when I did drop and have to start treating. With that in mind, you might discuss with your Primary doctor whether having an annual visit with the hemo might be a good idea especially since initial visits to specialist can take some time and being an established patient gets you in a lot quicker.

Tough to have to live with the uncertainity. And worse not being to do much about it. ITP might qualify as a syndrome as opposed to a disease. However Medicare does recognizes it as a disease/illness and covers most treatments.

As for frequency of Doc and CBC visits. This could be somewhat of a subjective judgement call on both your part and the Doc. My Hemo Doc required a weekly visit when the counts were in the 5-25k range. Then maybe every two weeks in the 50K range until we could determine an up/down/even trend. Anything above 60 was monthly.

Early-on, by whatever protocol, the Doc eliminated other possibile causes of platelet variability and settled on the Autoimmune function. The Doc hasn't missed yet and I've been seeing her since Day-1. On the web, Google and I do a lot of medication/treatment searches specific to ITP. As my Doc practices Oncology/Hematology, I'm probably a small portion of her client base. I've read there are approx. 60-75,000 with ITP. There are probably several million with some form of cancer. Latest numbers just on prostate cancer is about 180,000. We've got to be somewhat pro-active in keeping up with what's available.