Sandi,
Was never told I had pernicious anemia. When I was looking for a doctor in the area we now live in, each time I would ask the nurse if the doc had experience with ITP/MDS. "Ah, yes, pernicious anemia" nurse would say. "No, ITP/MDS" I would say.
History is this:
1995 - Diagnosed with ITP after blood tests found low platelet count, and a bone marrow biopsy was done. Hematologist, after many blood tests later, told me just to watch for certain symptoms, if these happened, go to emergency room. Nothing happened for years.
2008 - In another state, serious bleeding incident (stomach). Because platelets large, clumping, doc did bone marrow biopsy, told me I had MDS. No more incidents until:
2011 - Now in another state. Docs here doubt have MDS, but say do have ITP. Say check platelets every 6 months. Have had one bleeding incident, lower stomach and duodenum. Am told caused by AVMs,which can happen again. Hematologist here doubts MDS, says if I have it is mild. And the only way he can tell for sure is by looking at a bone marrow biopsy, which he does not believe is necessary at this point. (Well, as I say, I'd rather not unless absolutely necessary. And I'd rather not have MDS.) He simply said that different docs see different things. Says do have ITP, check platelets every 6 months. (My family practitioner from previous state only sent his evaluation of the bone marrow biopsy. Apparently not the actual biopsy results. The hematologist/oncologist's office in that state now tells me they have no records on me. It has only been 3 years, can't figure out why that info would disappear from his office.)
Have been told platelets run about half of what is normal. Sometimes platelets have been normal, or close to normal. Current internist talks more about hemoglobin levels being good than platelets.
Iron was prescribed by doc in charge of my case in hospital in last bleeding incident, to restore depleted iron supplies. Is iron supplementation routine after a bleeding incident (64 years old)?
Have been on omeprazole for 3 years now. Doc here says it's because of bleeding in stomach. (I suspect it is more that specialist who did endoscopy this year wants followup endo in a year to check for Barrett's Esophagus, which his PA told me is caused by reflux.)
Levothyroxine is for heart murmur and slowing thyroid. (Does help murmur.)
I do take supplements. Doc is informed, and has made recommendations, changed dosages. Take B,K2,D3, beta carotene, l-lysine, calcium/magnesium/zinc, lutein, chaga mushroom, mega green vegetable tablets, grape seed extract, cranberry extract. Dulse flakes or kelp instead of salt or pepper. Try to follow a macrobiotic diet.
Questions:
Is iron common after a bleeding incident? (Female, age 64.) Have you heard of any risk taking omeprazole with ITP? Is 6 month followup on platelets the norm now? Have read that intestinal bleeding common with ITP; are AVMs also common with ITP? Do you know how long a lab keeps a bone marrow biopsy? Would it be useful to pursue getting that biopsy?
Since it was years after the first diagnosis with ITP to a bleeding incident, guess I am pretty much a newbie at this. Learning to gather and safeguard data better, not to rely just on memory, for one thing!