Questioning my ITP Diagnosis

Removing my posts for privacy reasons! Thank you all for your reponses! Greatly appreciated!

Mikka, the idea of your hematologist diagnosing ITP based on medical history alone, without even a blood test, makes me want to pull my hair out! I can't even imagine your frustration.

ITP is diagnosed by excluding other possible causes of low platelets - and there are many; just for example, there is Evans Syndrome which causes hemolytic anemia and thrombocytopenia, and can mess with your immune system as well.

I am also curious about your tendency to bleed at platelet levels that I would expect not to be causing more than a little bruising. I wonder whether there may be other clotting issues at play, and would want to see further testing done.

Others here have said, don't treat the count, treat the symptoms... but that is because most ITPers don't have problems until their platelets go much lower than 50k. If you continue to read what others have written you will find some who treat at 50k, some at 30k or 20k, 10k and lower

You asked about treatment, but treatment is not normally required for ITP with platelet counts above 50k, as every treatment carries risks and side effects. I would focus my energy more on getting the right diagnosis for your symptoms. Keep fighting!

Mikka, I just noticed your other post which indicated that you sometimes take tranexemic acid. If you do get other testing done, be sure to check first whether this medication will throw off your tests, especially of clotting factor. You may have a low clotting factor, for example, and the drug might mask it. By the way, clotting factor comes from the blood plasma and not the platelet function... they are two separate things which work together to stop bleeding.

Hi Mikka! Where in NB are you? I'm in Saint John.

I was diagnosed in 2004 and was referred to a good doctor. I did get a second opinion just because. The second dr. agreed with everything my one here said, except for one thing. The dr. in Moncton told me if I was his patient, I would be getting a splenectomy. I didn't actually go that route until /06.

Is your doctor very knowledgeable about ITP?

Mikka:

Most people do not go through rigorous testing to get an ITP diagnosis. Usually, they can tell by the blood smear and the patients lack of non-ITP symptoms that it is just ITP. Your counts in the 70's back in high school probably required nothing more than monitoring. Treating opens a whole can of worms with side effects that are not pleasant and they can cause long-term problems.

However, if you are having symptoms at 50k, you should probably have some tests to check platelet function. Some people would experience bruising at that count, but not serious bleeding.

Also, anemia is usually fairly treatable with iron supplements. Does that not work for you? As Rob mentioned, Evans Syndrome is a possibility since it is a combination of low platelets and low red cells. To diagnose that, you'd need a COOMBS test.

All you can do is keep pushing harder.

Ann wrote:

Mikka, there is no way any doctor would do a splenectomy for ITP on someone like yourself who has counts above 50. The newer ITP treatments, Nplate and Promacta (Revolade in the UK), are designed to give a count of around 50.

Also if you are not sure that you really have ITP then a splenectomy is not a good idea. First you need to get a definite diagnosis.

Ann, you wrote in two short paragraphs what took me a whole page to communicate!

Removing my posts for privacy reasons! Thank you all for your reponses!

Removing my posts for privacy reasons! Thanks for the responses!

Removing my posts for privacy reasons.

Have you had your Ferritin tested? I would hope so since you are anemic. Also, have you been tested for Pernicious Anemia? You may not be absorbing the B-12 which would keep your iron low. Do you use sublingual B-12? You should consider the shots. I had to give myself injections at home (Methotrexate) and it's really not hard. They showed me at the doctor's office, but by the time I had to do it, I forgot. I actually YouTubed it and after watching a few times, got the hang of it.

www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/signs.html

There are a lot of things to look at and hopefully, they will figure it out soon.

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Dr. Dolan is the top hema dr. in the Province. He's at the Regional. I really liked him. Have you ever been referred to him? I haven't been to see him since 2010, I think.

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I have low Ferritin also and have had low B-12 as well. I have to monitor constantly. I think I have problems absorbing Vitamins from food since I have had a lot of deficiencies and it takes high dose prescription Vitamins and a very long time to see my levels rise. It's very common with autoimmune disorders to have Vitamin deficiencies....I see it here all the time. My daughter has Graves Disease and struggles too.

Injection needles are usually very tiny. If you don't gush with CBC's, you probably wouldn't gush with injections. If your doctor was worried about that, he probably wouldn't suggest it. I'm surprised you respond to the regular pills. I didn't. Only the sublinguals worked.

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For the first few years of diagnosis, I was getting copies of my tests. That only changed when I switched hospitals. When I saw my fd, I'd get copies from the receptionist but didn't have to pay for it.

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Mikka:

I don't think I have ever heard anyone describe gushing bleeding from a bug bite, even with counts below 5k. That is very strange. Bleeding for days after a venipuncture is also odd. I can't believe that doctors would ignore descriptions of bleeding like that from a patient. If you are fainting from rapid blood loss after a CBC, they should send you to the hospital.

With all of that bleeding going on, I don't think it's just ITP.

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Once I started going to the clinic at the other hospital here, I couldn't get print outs. I would call in to get the results.

Vitamin shots are not usually given in the veins. I wouldn't ever attempt to stick a needle in my veins. I gave myself shots in the stomach. Just grab some skin and push it in at an angle.

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We use the clinic at Emory University and the results are available on a secure "patient portal". The results are embargoed for about a week, presumably so that the doctor has a chance to see the results before the patient does, so Ellen still has to call to get her platelet count the next day. We have full access to test results going back five years or more. Nice.

Post removed for privacy. Thanks for the responses!

It sounds frustrating about your tests results not being available and the doctors not listening to you. My first hemo didn't listen to me and it was so invalidating.

re tests: In the USA we have now the Health Information Act (HIPAA) that states something to the effect of: everyone has a right to their medical information and also a right to privacy of that information. I find its really easy now to get all my test results, the lab will send me a copy. Or online. But in the past the labs only gave the info to doctors.