Alright - I finally got my CBC done! And the results were: between 50k and 60k - which is a great jump and amazing numbers for me. I was totally excited......
But wait a minute, there's more.
The new place I'm getting my CBC is a lab where they send me results and also send them to my doctor in Baltimore. So as I read further through the new report (which looks different than others and I had to figure out what info was where), the results for platelets said "50-60 thousand, inconclusive. Patient has significant clumping of platelets which may affect numbers".
Wait, what? Clumping of platelets? I've never read that before.
So I went online, and the first (and second, and third) thing I pulled up were pages from medical journals talking about this acid that lines some of the tubes they collect blood in, called EDTA. For approximately 1 in 3000 people, this EDTA can cause platelets to clump onto it, Which means that when they pull the blood for the slide, there are far less platelets showing, because they are all stuck on the EDTA in the tube. And this can sometimes lead to a diagnosis of "EDTA-induced pseudo-thrombocytopenia".
EDTA-induced pseudo-thrombocytopenia. Meaning the patient (in this case me) may NOT EVEN HAVE ITP.
Obviously, my next call was to my new doctor at Johns Hopkins.
Thankfully, he had already read the results and thought the same thing - that it is actually possible that I may not have ITP at all, and that it may actually be an error because of the EDTA.
My doctor asked that my next step (after a 10 day work trip) is to get re-tested, with two tubes - one lined with the EDTA, one without. Apparently there are differences in the tubes depending on the color of the cap ( I will make sure to find out this detail before I go back). And if each of the results are dramatically different numbers from the same pull, then we may have our answer - that I never had ITP in the first place.
This is all just speculation right now, but as you can imagine, this whole turn of events has me pretty emotionally exhausted. I mean, yes, this would be good news - great, really. But my god, I have a lot of other thoughts going on in my head.
1. I'm angry that this was never brought up or looked at until now.
2. I'm thankful that I was so adamant about not having a splenectomy, but
3. My god I took a lot of unnecessary drugs last year, including rituxan and winrho, not to mention three hostpitalizations for Ivig. That makes me sad and angry. My body is still recovering from the steroids, and I'm still losing hair.
4. I'm proud of myself for becoming my own advocate over the last 18 months, and becoming able to tell a doctor "no". Especially if it ends up I didn't have anding wrong with me.
5. I keep inking about the money spent last year on my health, not to mention the time lost from work and emotional costs.
But the biggest thing ging through my head is this:
If only one in 30,000 people have ITP, but 1 in 3000 have this reaction to the EDTA, why isn't it a standard protocol to rule out EDTA sensitivity before giving a diagnosis of ITP?
Because of this huge question I pose, I will be re-posting this as a new subject as well, because I want to see if anyone else has ever heard of this EDTA reaction.
So - for now, I go to work for 10 days. Then on the 29th, the new test. I will keep you all posted, and I'll check in during my trip.
Thanks to all of you who've been following my journey - its awesome having you all out there, and it makes the whole process so much easier knowing I've got a group of folks who listen.
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