Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
My head is spining trying to figure out a recent diagnosis of Hereditary Compound heterozygous C282Y/H63D with ferritin level at 600.
I'm a 60yr old guy who started having problems with HH associated diseases 22yrs ago.
Diabetees insipidus (maybe caused by hypopetuitarism);
hypogonadism;
misdiagnosed porphyria (HCP), but maybe I have the sub-type of porphyria more common with HH;
fibromyalgia with bad brain fog;
neuropothies;
short term memory problems;
migraine.
2 weeks ago I had a phlebotomy. That night I experience outrageous thirst with massive amounts of lost urine. Dehydration was brutal. My doctor said the diagnosis of diabetius insipidus was "spot on". Also experienced first signs of hyper-mania. That really scared me as I experienced this 22 years ago with periodic episodes of rapid dehydration.
Anyone else have bad experiences after phlebotomies? E.g., dehydration and hyper-mania?
My cardiologist, having heard of the HH diagnosis, wants me to get an echo cardiogram. As I have one phlebotomy left to get my level below the target of 50, I'd like to get it done ASAP to improve my immune system in case I get covid.
Finally, do HH'ers at a higher risk with covid regardless of feritin levels?
Thanks for reading my history and concerns.
God Bless,
Rusty
It’s not that easy to perform riskless and painless phlebotomy even though it looks simple, and phlebotomists need to be certified as follows https://phlebotomynearyou.com/phlebotomy-certification/. You might check the doctor you want to trust and see whether they have the certificates necessary in your state.