Likely ITP Diagnosis?

Hello everyone. I recently stumbled upon this forum after Google searching my last couple of blood test results.

I've been a mostly healthy person for all my years, now approaching my late 20s, and just had my first routine blood test. The results of the blood test (about 3 weeks later) showed my platelet count to be around 27,000. This caused great concern with my Family Doctor as she suggested to me that I get an immediate blood test the following day. The new blood test with differential showed a count of 58,000 with the note of large/giant platelets. Still pretty low and suggested that I see a hematologist. Reading on this website seemed to suggest that giant/large platelets are newly created, does that mean my count is inflated to be 58,000?

I'm currently looking for a good hematologist in my area (Southern NJ/PA) if anyone can suggest someone! But aside from that, looking through my family history, it seems that the majority of my Father's side of the family all suffered through some kind of ITP. Also one of my older brothers has been suffering through a low platelet count with a lack of response to his first round of steroid treatments.

Is it too early yet to assume an ITP diagnosis for me? Obviously factors for everyone seem different, but it looks like my family history might decide it for me. Are there any common misdiagnosis' of ITP for something else? Are there any stories of family members responding differently or similarly to certain treatments? I have been asymptomatic as far as I know to this point aside from various headaches which may be allergy related.

I know the words of people on a forum can't match up to what my Doctor can tell me, I'm just trying to get some sort of mental preparation for what I may be headed for, if not a little support.

Anyhow, any sort of help I could receive would be amazing. Thank you for your time.

Hi there,
Interesting situation you're in, with your family history.
Obviously follow up specialist appointments & ruling out other possibilities need to happen first. But you have arrived at a great support place for ITP. Very informative (even more so than Doctors in many cases), reassuring & friendly. Keep your chin up.
mj

The most common misdiagnosis for ITP is with "familial thrombocytopenia" which is a low count that runs in families. It isn't ITP and doesn't respond to the usual ITP treatments. Suggest you google for it. It may be difficult to get the doctors to listen as they tend towards ITP as standard. Good luck.

I appreciate the kind words and the support. I'm still trying to make an appointment with a Doctor very soon, so it's nice to just read some things to put me at ease. This journey only started last week or so, so I was going through the natural freaking out periods.

@Ann: In the case of 'familial thrombocytopenia', what treatments exist for a low platelet count? Googling doesn't seem to give me too much information insofar as treatment. Most mention of treatment I see is related to ITP. Steroids, splenectomy, etc. Having such an extensive family history of low platelets seems very odd from everything I've read, but they all may have just assumed ITP without formal diagnosis and the like.

Thanks again.

Hello Apple.

Here is some info regarding familial ITP. I'd think it's worth looking into in your case.

pdsa.org/resources/other-platelet-disorders.html

Your counts are still pretty good and in the safe zone. Usually treatment is suggested with a count below 20k and symptoms such as bleeding and bruising play an important part. Large platelets are new platelets, and they work well. Most people with ITP do have large ones, however, if they are too large, that can signify another platelet disorder.

Don't freak out; there are many treatment options and splenectomy is usually a last resort. Also, don't underestimate the words of the people here and don't overestimate the words of the doctor. Many doctors are not well versed in ITP and do not keep up with the latest research. It's important to find one who is knowledgeable. The PDSA provides the most current information and it's advisors include the top ITP specialists. It's also important to research and learn as much as you can so that you can play a part in treatment decisions if the need arises.

Applewhite wrote: @Ann: In the case of 'familial thrombocytopenia', what treatments exist for a low platelet count? Googling doesn't seem to give me too much information insofar as treatment. Most mention of treatment I see is related to ITP. Steroids, splenectomy, etc. Having such an extensive family history of low platelets seems very odd from everything I've read, but they all may have just assumed ITP without formal diagnosis and the like.

Thanks again.

Usually the thrombocytopenia is mild to moderate and treatment is not necessary. Most of the ITP treatments including steroids and splenectomy don't work for most inherited thrombocytopenias so be wary of treating until they are sure of what they are treating. I have read that the TPO drugs can be used. The TPOs are new drugs that stimulate the body to make more platelets. It's fairly new for treating ITP and even newer for treating other blood disorders.

Sandi wrote: Here is some info regarding familial ITP. I'd think it's worth looking into in your case.

Also, don't underestimate the words of the people here and don't overestimate the words of the doctor. Many doctors are not well versed in ITP and do not keep up with the latest research. It's important to find one who is knowledgeable. The PDSA provides the most current information and it's advisors include the top ITP specialists. It's also important to research and learn as much as you can so that you can play a part in treatment decisions if the need arises.

I appreciate the suggestions Sandi. I am sorry if it seemed like I was discounting what others on the board were saying compared to Doctors, not my intentions. I am thankful for all of the input possible.

Ann wrote: Usually the thrombocytopenia is mild to moderate and treatment is not necessary. Most of the ITP treatments including steroids and splenectomy don't work for most inherited thrombocytopenias so be wary of treating until they are sure of what they are treating. I have read that the TPO drugs can be used. The TPOs are new drugs that stimulate the body to make more platelets. It's fairly new for treating ITP and even newer for treating other blood disorders.

Thank you for the information regarding inherited thrombocytopenia, Ann. It may be somewhat of an explanation as to why my brother has not been responding to the steroid treatments thus far. Or even if he does have ITP, I realize steroids don't always work for that either. I have finally secured a Doctor's appointment on Thursday, and I will be sure to bring the possibility of an inherited thrombocytopenia link up now that I have compiled a family history of all the people on my father's side who have exhibited low platelets.

Applewhite wrote: I appreciate the suggestions Sandi. I am sorry if it seemed like I was discounting what others on the board were saying compared to Doctors, not my intentions. I am thankful for all of the input possible.

Don't be sorry! Of course you'd want to hear what your doctor has to say and you need him a lot for this. I just wanted you to know that there are some very knowledgeable people here who can help you along the way too. A lot of us here have said that we taught our doctors a few things because of info learned here. Some people expect their doctors to have all of the answers, but that isn't always true.

My sister and I have both had ITP, but it was 30 years apart. Two cases in a family doesn't qualify for possible familial ITP; they usually want to see 3 or more. I think for us it was just coincidence.

Doctor's Visit Update

Seeing the Doctor today and talking to him about our extensive family history of low platelets along with an administered blood test, he feels like my condition may be an inherited thrombocytopenia. The cause potentially stemming from a mutation in the MYH9 gene. My platelet count was at 50,000 on the nose today, so he didn't feel that treatment was necessary, especially since I haven't really been feeling any symptoms. He wants to follow up with me in six months to see where I am at, unless any emergencies come up in the meantime. This will give him and his team time to study my blood and come up with a plan for me then if one should be needed. They seemed very excited to study my blood, or so the nurse let me know.

I feel a bit relieved at the moment because I can continue doing the activities I can enjoy, and I was particularly worried about flying - but that has been put to rest.

Has anyone around here dealt with genetic thrombocytopenias? Or is this more of a place only for those with ITP?

It sounds like your doctor is very good, thoughtful, and giving you good advice. Glad your platelets seem stable and you can continue with your normal activities.

That's strange hearing about "familial thrombocytopenia" as everything I've read states that ITP is not inherited. I'm glad your platelet count puts you in the safe zone. Let's hope it stays that way. Keep us updated!

ITP isn't inherited but certain types of low platelet disorders can be.

My father had a bout of low platelets 3 years after I was diagnosed with ITP. I asked my hemo if we could possibly have a form of familial low platelet disorder but she dismissed the idea saying that if it was inherited low counts would have been consistent throughout my life.