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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kathiegeary | @kathiegeary | Mar 22 12:07pm

In reply to @wendy517 "I used to donate regularly for many many years before covid, then it started rising after..." + (show)

Feel your frustration

kathiegeary | @kathiegeary | Mar 22 12:09pm

Can not donate, have been on Coumadin since 1974, they do not want my blood

kathiegeary | @kathiegeary | Mar 22 12:09pm

In reply to @wendy517 "And you were tested for Hemocromatosis? Genetic test?" + (show)

Yes

kathiegeary | @kathiegeary | Mar 22 12:11pm

In reply to @wendy517 "Thanks so much for the article, I will read that in next couple days. My father..." + (show)

Please accept our sympathy

Lori, Volunteer Mentor | @loribmt | Mar 22 12:47pm

In reply to @wendy517 "Thanks so much for the article, I will read that in next couple days. My father..." + (show)

Oh, Wendy honey, I’m so sorry to hear about your dad. Losing our parents, the people who have always been there for us, it’s just really tough. My daddy was my buddy too and I was 28 when he passed away. Now I’m 70…and I still miss that guy! You dad will always be near you with your lifetime of memories.

On a happier note, the clean scans is very positive news. So now for the HH testing…fingers crossed for some answers soon. Keep me posted.

Knowing what a difficult time this my thoughts are with you and your family. Sending a gentle hug.

wendy517 | @wendy517 | Mar 23 6:29am

In reply to @loribmt "Oh, Wendy honey, I’m so sorry to hear about your dad. Losing our parents, the people..." + (show)

So young to lose your Dad, I really am truly blessed we had him so long and he had MANY comorbidities like congestive heart failure, kidney disease, BP issues, sugar etc. He regulated them all, his goal was to walk, go to the gym, do extra hard sudoku and enjoy his family. He was able to do all those things only weeks before his passing. I'm blessed for sure and again, so sorry Lori, to lose a Dad so young it's hard for me to even fathom.
Will speak soon after I get some more testing done. I want the doc to look into Enthesitis, Axial Spondyloarthritis and of course Hemocromatosis. I'll take each day, raining buckets here in PA today, always makes my body ache more. But I always know, this too shall pass 😌

Be well, we'll talk soon Lori and hang in there Kathy.

slkanowitz | @slkanowitz | Mar 25 3:19pm

Hello Wendy. I too am very sorry for your Dad’s passing. We’re never prepared for that and it’s so difficult! I hope you have a good support system and loving family.
Regarding the high hemoglobins, an overlooked cause of this can be sleep apnea. When you stop breathing during sleep, the lower oxygen levels stimulate red blood cell production. Anyone can have sleep apnea, not just obese men with big necks, etc. In addition to the hemochromatosis possibility, sleep apnea should be considered. The transferrin saturation in serum is the best indicator along with genetic studies for the hemochromatosis and a nocturnal pulse oximeter test a good, easy screen for sleep apnea. If oxygen levels dip, a full sleep study should be done. The arthritis symptoms should be checked out as well and may be unrelated, especially if you have a family history of autoimmune diseases. Good luck with your search for the cause of your high hemoglobin.

slkanowitz | @slkanowitz | Mar 26 10:01am

Just an afterthought, when hemoglobin/hematocrit levels are high, the excess RBCs make the blood “thicker” and more prone to clot, which can cause stroke and heart attacks, especially if platelets are high. An anti platelet drug as simple as a baby aspirin daily is a good idea to prevent clots. I would ask your doctor about that if you’re not already on it or something similar.

wendy517 | @wendy517 | Mar 27 10:21am

In reply to @slkanowitz "Just an afterthought, when hemoglobin/hematocrit levels are high, the excess RBCs make the blood “thicker” and..." + (show)

I will be tested for sleep apnea, it's on my list for sooner than later along with genetic testing for Hemocromatosis.

You bring up a good point that I probably still have thick blood with no PV and may need to still take a baby aspirin. I stopped once I was told no PV but my HGB is going back up steadily. I'll have it tested very soon.

Thank you for your insights!

Be well.

martine0224 | @martine0224 | Jul 1 10:59pm

In reply to @wendy517 "I will be tested for sleep apnea, it's on my list for sooner than later along..." + (show)

What is PV ?

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