Finally

[wjoyful]

I have finally found a hematologist. After 7 months he is testing me for h-pylori which is a bacteria in the gut that can cause ITP and iron deficiency which also can do it. Keeping my fingers crossed that one of these is the reason.

[Steve5563]

Good luck and keep us posted on how you get on

Steve

[ItsRalphy]

I have heard of Itp causing iron deficiency in women... but I haven't heard of iron deficiency causing Itp. Do you have references for this because I have both Itp and low iron and would be interested in more info if this is the case

[wjoyful in reply to ItsRalphy]

I’m still waiting for a confirmation for iron deficiency. H-pylori came back negative so I am back to a wait and see. My hematologist was the one who told me about iron deficiency so I only have his say so.

[ItsRalphy]

Oh thanks wjoyful! I hope you get some helpful answers! Good luck for your Itp rollercoaster experience

[Frank_Will]

Getting tested for H-pylori monday. Hope you got the answers you desired.

[wjoyful]

No. I tested negative. Not the easy fix I was hoping for

[Kyriak51]

Hi wjoyful, kyriak51here. I was diagnosed with ITP in early 1990’s but refused the standard treatment of the day ( steroids and splenectomy), preferring to waite until AMGEN developed a platelet stimulating factor (Nplate) which was approved in 2008 and has stabilized my counts, 30-80 thousand.

Just to clarify, H. Pylori is the bacteria that causes gastric ulcers, prior to it’s discovery increase acid production was generally thought to be the cause. As far as I know H. Pylori doesn’t cause iron deficiency but bleeding can which is why I was started on1mg folic acid daily.

What treatments have you had, what’s your platelet count range, hemoglobin/hematocrit are you bruising? Have you had a splenectomy? How are feeling? I hope your ITP is stable and you are able to function and enjoy life

[wjoyful in reply to Kyriak51]

Hi. I have been on steroids twice, had ivig once. No success with either one. I am not bruising however I do have some bleeding gums occasionally. My hemo is using the wait and see method because I also have heart failure and I am on heart meds. I can’t afford nplate and it isn’t covered by my benefits. My platelets sit at 26 and there hasn’t been a change in three months. I work full time and live a pretty normal life. They want to do a bone marrow biopsy which scares me cause it’s is going to be so painfull. H pylori was negative and iron is being checked soon.

[Kyriak51]

As a Hem/Onc nurse I have assisted with many bone marrow biopsies, we medicate with Fentanyl and versed ( Midazolam) during the procedure and instruct patient to take Tylenol after, the patients tolerate the BM very well. Speak to your doctor and request proper medication, you’ be fine. Why are they requesting a BM? Be well kyriak51

[wjoyful in reply to Kyriak51]

The don’t know what else to do cause they don’t know what caused my ITP. He won’t try anything else till they rule other things out. Isn’t fentanyl the stuff people are of on.?

[Kyriak51]

Don’t understand your question regarding fentanyl, is this drug a powerful opioid that has the potential for abuse...yes absolutely which is why it’s highly regulated. Did this prevent drug lords from obtaining fentanyl and mixing with street heroin causing a massive increase in overdose deaths on the streets of New York City NO; when used in medical settings it is a safe short acting drug used for bone marrow biopsies, colonoscopies and many other procedures requiring sedation. I’ve had two colonoscopies and carpal tunnel surgery without incident however, I did have the best nights sleep I’ve had in years and no I did not become addicted. Have your biopsy but ask for pain management,let me know how it goes kyriak51

[wjoyful in reply to Kyriak51]

Thanks for explaining that for me.

[Kyriak51]

Your welcome:)kyriak51