Am confused : Hi my specialist has... - ITP Support Assoc...

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Am confused

Metalgod profile image
11 Replies

Hi my specialist has asked my GP to book me up a gastric investigation even tho never mentioned it to me at last consult as was talking about an IV iron infusion as I am iron deficient ferritin level of 21 even tho on tablets my Gp doesn't know why I need a gastric investigation as I don't have any problems with my stomach etc and my specialist is on annual leave any ideas ??

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Metalgod
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11 Replies
itplassne profile image
itplassne

My haematologist asked me whether I had indigestion, as helicobacter pylori can apparently cause low platelets, and can be treated easily with antibiotics. Perhaps your haematologist wants to double check?

Metalgod profile image
Metalgod in reply to itplassne

My platelets levels are ok and I haven't had any problems with my indigestion and don't have any of the symptoms of the bug but wish she would of discussed it with me as both me and my gp are confused ??

Lynney11 profile image
Lynney11

I’ve recently had a gastroscopy as my ferritin levels were low and they needed to find out what was causing it. Iron tablets would only increase the amount of iron in your blood, not the ferritin level, which is iron stored in the liver and spleen etc. Does this help?

Metalgod profile image
Metalgod in reply to Lynney11

Thanks for reply but my specialist wants me to have an infusion of iron as tablets not bringing my ferritin levels up hence my confusion but more annoying is she never mention about me having a g.I and my doctor won't sort one out until my specialist contacts her by phone ???

Metalgod profile image
Metalgod in reply to Lynney11

Also what was your diagnoses and how was you treated ??

Lynney11 profile image
Lynney11 in reply to Metalgod

I can’t answer your question as I haven’t heard from my doctor yet. As I said the test was very recent! As soon as I hear from her I can let you know.

Metalgod profile image
Metalgod in reply to Lynney11

Ok thanks 👍

CDmom profile image
CDmom

Dear Metalgod, It is absolutely wonderful to hear that your doctor is sending you to a G.I. I agree with that comment maybe you have H pylori or some other type of bacteria, virus, fungus, parasite, etc.

I had a terrible case ITP for eight months from April 2017 till October 2017.

It started one month after I got back to USA from a short vacation to Costa Rica. I experienced roller coaster platelets as low as 1,000 and needed IVIG every 7 to 10 days.

I had read about H pylori causing ITP so I looked hard to find hpylori but never could find any organisms.

I was ready to give up and resigned myself to having ITP for life but...

I got really lucky in September 2017 when a friend suggested I try Rife ultrasonic treatment. That is ultrasonic waves to kill bacteria, fungus, etc. It was inexpensive and easy and painless. I also added homeopathic therapy and took a parasite cleansing medicine for about two weeks.

And within one month I never needed IV I G again after October 17, 2017. And at that point I slowly weaned off of Promacta and prednisone.

The G.I. doctor found nothing inside of me and it was the ultrasonic treatment that killed the unidentified organism that stopped my platelet crashing cycles. The unidentified organism was making my body make antibodies that them were attacking my platelets.

So I would definitely go to the G.I. doctor but I would not stop there because not all organisms can be found in blood or stool.

Good luck!

Metalgod profile image
Metalgod in reply to CDmom

I glad things worked out for you but 5yrs ago when first diagnosed with itp I had both g.I oral and rectual and nothing found no bleeds nothing and had a poop scoop and found it was a bug then had course of treatment and finally bone marrow biopsy which allowed me to go on eltrompag and my platelets have been ok except when I had covid in March 2020 now it's my ferratin levels that are low at 21 so am awaiting an infusion of iron as tablets are not bringing it up but nothing was mentioned to me about a G.I and my doctor won't do anything about one until spoke with my specialist who away on leave just annoying as normally she talks about everything with me

CDmom profile image
CDmom in reply to Metalgod

That does sound annoying! Good luck!

Metalgod profile image
Metalgod

Thanks 👍

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