EDTA causing wrong CBC read?

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?

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.

How did your ITP get diagnosed in the first place? Was it just a routine blood test or did you have symptoms?

I thought they could see a pseudothrombocytopenia when they did the blood smear, but maybe not then.

Routine blood test - I've never had too much of symptoms. Even when my numbers were really low, the amount of petechia I get is so insignificant that most people wouldn't notice.

I don't know about not seeing a pseudo on a smear. I'm hoping to find out more about this!

I've had clumping many times when the blood was sent out. When they did instant counts, I'd get reliable results. It got to the point where I couldn't have samples sit around.

Interesting - that's a possibility as well, since these results were sent out.

Will definitely be interesting to get the next one done and see what's up.

The thing that does make me hopeful is that there is no bad outcome to this story. If i end up not having ITP, well that'd be amazing. And if I do indeed still have ITP, I think the papaya may be enough of a help to my numbers to continue on untreated. I mean, going to 50-60k from 17k w nothing but papaya leaf is pretty awesome, if that's the story.

Sandi, have you ever heard of this EDTA stuff?

Yes, I have heard of EDTA. When my results kept coming back inconclusive, I asked if they were using vials with EDTA. Turns out they weren't, but even when they did, it came back with no result. That's when I stopped going to a local lab and only got blood work at my hemos' office, who had the instant count available.

I have only seen one person here who had pseudo-thrombocytopenia. He was a child.

EDTA vials are the lavender top vials. I was asked when I first went to the London Hospital if my blood was good with the lavender vials. Mine is, but one of the others at the hospital always has two vials taken, the lavender and the red top as she has had problems in the past so they do two counts as a cross check.

They are lavender here also. Must be the universal color.

The EDTA is in the test tubes to prevent the blood from coagulating, isn't it? Why does it do the opposite for a fair number of people?

I've always been confused about ITP patients having the same blood clot risk as non-ITP people. Can anyone explain why this is?

Karen:

People with ITP sometimes have more of a clotting risk than non-ITP people. That is because some clotting disorders can go along with ITP. One of them is APS and one of the symptoms of APS is low platelets. I have the antibodies. Low platelets will not stop a clot.

Factor V Leiden is another one. I'm sure there are others, but I don't have time to look them up right now. Splenectomy also raises the clotting risk.

These are not routinely tested for so it might be some time before people find out they have it. By that time, they are treating ITP to get counts up and sometimes the treatments, mixed with a higher platelet count, can cause the clotting to begin.

I got a new CBC today, but will not get the results for a couple of days. Per the dr request, they used two vials - one
Purple (with the edta) and one blue (without). I don't mind whatever the result - but it would be pretty weird if it were the EDTA stuff.

Will report back soon!

Let us know. I hope you get the results from both and can compare.

Hi Kittie g. I was curious about your post, on edta, yesterday 7/3/12 I had a cbc was not happy with the results, they dropped 10 in 22 days, my last count was 53k . I asked the lab tech what they use on the tubes, some are coated with edta, some heparin, they are color coded, as you mentioned earlier, in your post.My Doctor said I was ok, my next appointment is 8/7/12. but if they drop to 30k, he wants to use ritaxin,I am not too keen about this.I am going to increase my tea,consumption to 3 cups a day, and diminish my vit. intake. thank you for you info. Take care, hope your platelets increase. god bless , you. frankie34

reading and very appreciative of all the posts. anyone know the best hospital on east coast to deal with low platelets? also, saw a post on stopping vitamin intake. Is this detrimental to low platelets? sorry for all the questions, but really not getting any answers from current dr's?

Stopping vitamins? No, you don't have to do that.

The EDTA can cause clumping of platelets, also a poor draw and mishandling of the sample. If you're having this problem they can do a sample using tubes with Citrate and or Heprin. That being said some people's samples still clump in these, so it is not always the answer. I did read a post by a Hemo saying if this is the case a sample could be drawn in a tube with ACN ( going from memory so I could have the letters wrong). I have a clumping issue so I have my counts done manually which has it's own challenges since this is a bit of a lost art so my Hemo says there is lots of room for error.

Anyway I wish you all health and happiness.

Kindest regards,
Barry

Da2218-- You can get answers here! Glad you found the forum.

Regarding vitamins: With low platelets, you shouldn't take Omega 3, it prevents the platelets from working. I tried it and got bruises. Seems I can eat salmon, just not the pills. I also quit taking Vit E though I'm not sure if it inhibits platelets.

Omega 3 isn't a vitamin. It's a supplement. I've been taking Krill Oil. I read that it's better than fish oil but I'm sure that will change in the next few years.

Yes, Vitamin E can cause platelets to be less sticky.

Kittie's keeping us in suspense. I'd love to know if the tubes were the problem or not.

Sorry - life got in the way lately.

finally an update for everyone: short story, I still have ITP. But also have clumping sometimes, so we are going to continue using two tubes for the next few CBCs. Here's the stats:

6/15: got numbers done - 60k and they saw the clumping (and I wrote the long post about this).
6/29: new test, two vials, one coated w edta one without. 31k in one and 30k in other.

So now we know these things:

1. EDTA is probably not an issue for me.
2. My platelets sometimes clump if sitting for a while (the new lab sends them out, rather than on site testing).
3. The papaya is not helping much, but maybe helping a little?
4. I still have ITP, and my numbers are dropping, but still in a decent range.

The numbers have gone down pretty significantly over the last few months, but staying above 30k with no medication besides papaya leaf is good enough for me. My current dr is fine with not treating at these numbers, and is fine with me taking the papaya leaf as an experiment. So the experiment continues!

I never thought papaya would cure it, but if it keeps me from having to take steroids/winrho/rituxan I'm happy enough with that.

It will be great to talk with experts at the conference in a couple of weeks about these things!

I hope to see some of you there!

Great - no real difference at all from the two tubes. That's good to know.

Certainly not the outcome I'd have proffered, but kinda the outcome I was expecting. Was good to find out though.