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How to find out if ITP is familial type of not

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8 years 3 weeks ago - 8 years 3 weeks ago #63184 by ITPCanada
Hi,
My spouse diagnosed with itp approx 8 yrs ago. He had bone marrow aspiration. Report says its ITP maybe of familial type)
His recent count is 100k never took any medication for ITP. Routine annual checkup every year shows his count is stable at around 100k.
My question is how to know if his ITP is familial type. His sisters and parents don't have itp. What to expect with his count. Can I hope positively that his count will stay same in coming years?? Is it realistic to think like that?

Thank you very much for your replies.
God Bless!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 3 weeks ago #63189 by Sandi
He would have to be tested for the other platelet disorders to find out if he has familial types of low platelets.
www.pdsa.org/resources/other-platelet-disorders.html

There is no reason to believe that his counts will not stay where they are, although an illness or medication could knock them down. There's no way to know for sure, but you have every reason to be optimistic.
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7 years 7 months ago #64675 by ITPCanada
Replied by ITPCanada on topic How to find out if ITP is familial type of not
My spouse is not tested for familial type of thrombocytopenia. But when he was first diagnosed with ITP hematologist followed all normal steps(CBC with all other counts are normal, ct scan, chest X-ray, common questioning about health and Health history including bone marrow aspiration). Do you think my hematologist have not done full checkup for diagnosing ITP?

Do all people who are diagnosed with ITP routinely tested by hematologist for all different types of (familial/ genetic/ inherit/ gene mutations ) Throbocytopenia before giving diagnosis of ITP. ?

Thank you very much.
Last count oct 2017 100k

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7 years 7 months ago #64677 by maria3132
Replied by maria3132 on topic How to find out if ITP is familial type of not
We have a family history: my uncle had chronic ITP as a child, diagnosed age 5, resolved with splemectomy at age 12; one of his sons also had an acute episode as a child.

For my son (diagnosed 2.5 months ago, age 3), they did the following analyses:
Factors 6,8,9,11, von Willebrand factor; all came back normal.

I did also did extensive genetic testing (on my own DNA) and found nothing abnormal.

My son's hematologosts were considering also doing some antibody and CMV virus tests but haven't yet. They did not test for H. pylori, though it was discussed.

Good luck!
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 7 months ago #64688 by Sandi
Canada:

Most doctors do not do much testing for an ITP diagnosis. Your husband got more tests than I did. They usually just go by the CBC results and symptoms or abnormalities that the patient might have (fevers, weight loss, etc). If a patient has critically low levels and does not respond to anything, they might start doing more tests. Age is also a factor when considering diagnostic tests.

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7 years 7 months ago #64693 by ITPCanada
Replied by ITPCanada on topic How to find out if ITP is familial type of not
Thank you Sandi!
I agree that my spouse got proper testing to diagnose ITP. But he never received any treatment, so different diagnosis on the base of not responding to treatment is still unknown. ...Then what are the chances that he indeed is having ITP rather than any other type of low platlet (his count is stable for last 8 years without treatment )?
I do not want any other diagnosis which is more dangerous :(

My spouse is now prediabetic. Does it have anything to do with autoimmune system or ITP.?

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7 years 7 months ago #64694 by ITPCanada
Replied by ITPCanada on topic How to find out if ITP is familial type of not
Thank you

My spouse do not have any relative with ITP or other autoimmune disease. Only his mom have vitiligo. Is ITP and vitiligo is related is some way other than they both r autoimmune

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 7 months ago #64699 by Sandi
If his counts are above treatment level, that's a good thing. There would only be concern if his counts were very low and he wasn't responding to treatments. Stable counts are great!

Vitiligo and ITP are both autoimmune so yes, that could be a connection. Diabetes can also be autoimmune depending on which type it is.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 7 months ago #64705 by mrsb04
Type 1 diabetes is auto immune. Type 2 isn't

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