Does anyone have Hemocromatosis and??

Posted by wendy517 @wendy517, Mar 17 2:30pm

Does anyone have Hemocromatosis and your iron levels aren't through the roof but your hemoglobin keeps going up and the phlebotomies help bring it down?
I've got Hemocromatosis in the family and will be tested for it. They did not feel I needed it because my iron levels did go up to high after the phlebotomies (that was bizarre to me, should be opposite was my logic) and both the oncologist and GP said its nothing to worry about. Yet, we have no diagnosis anymore after the BMBX showed definitively no blood cancer. So Secondary Polycythemia with no known cause yet.
Just had CT scans of lungs, abdomen and pelvis done on Fri to rule out any malignancies.
I was thrilled NOT to have blood cancer (BTW it took me 3 oncologist to listen to my concerns / hunch and I was right, it wasn't PV), but now not knowing what's causing my HGB to go high is a little frustrating.
My hands hurt SO much and thats a classic sign of Hemocromatosis. It drives me crazy when doctors always are "by the book" when everybody's body is different and can present differently. The test will tell us.

Happy St. Paddy's day everyone, enjoy! I'm going to go see Samantha Fish for some live music, good for the soul 🎶

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Colleen Young, Connect Director | @colleenyoung | Jul 6 3:03pm

In reply to @martine0224 "What is PV ?" + (show)

Hi @martine0224, welcome. PV stands for Polycythemia Vera, a type of blood cancer that causes the bone marrow to make too many red blood cells.

Have you been diagnosed with hemochromatosis?

betsy01 | @betsy01 | Jul 7 10:13am

In reply to @colleenyoung "Hi @martine0224, welcome. PV stands for Polycythemia Vera, a type of blood cancer that causes the..." + (show)

Hi to you both. Colleen, I have been diagnosed with Hereditary Hemochromatosis. Maybe Martine has as well? Is her diagnosed related to HH? I am currently seeing a GI doctor, really no visits with him now, but every two month phlebotomies that i am not handling well. What do you recommend for us?

Colleen Young, Connect Director | @colleenyoung | Jul 15 10:30am

In reply to @betsy01 "Hi to you both. Colleen, I have been diagnosed with Hereditary Hemochromatosis. Maybe Martine has as..." + (show)

Hi @betsy01, here is more information from Mayo Clinic about the treatment of hemochromatosis.

- Hemochromatosis https://www.mayoclinic.org/diseases-conditions/hemochromatosis/diagnosis-treatment/drc-20351448

Phlebotomy (blood removal) is typically a safe and effective to manage hemochromatosis. I'm sorry to hear that your body is not handling the phlebotomies well. Can you share a bit more? Are you in the care of a hematologist too?

betsy01 | @betsy01 | Jul 15 11:31am

In reply to @colleenyoung "Hi @betsy01, here is more information from Mayo Clinic about the treatment of hemochromatosis. - Hemochromatosis..." + (show)

Hi Colleen. I should be with a Hematologist, but with a GI doctor. I do not, and never have, tolerated needles in general. However, I have had a vagal vagus response, did not pass out completely. I am suppose to go have them done every other month. Last one, they blew the vein, restuck and no blood came out of that vein. I am afraid I reached my limit and left. Next one scheduled for August 13th or so. My “good” veins apparently are building up scar tissue. I tried going to NE Florida Cancer ( recommended by an out of Mayo physician), we also ran out of success. So, any recommendations? Thank you, Betsy

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