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.
On Thursday I was getting phlebbed and I asked the nurse how many HH are treated there. She said it was over ten and then mentioned the latest patient who had a hemogloblin of 20 at diagnosis.
I have never heard of someone having that high hemoglobin. The nurse mentioned it was very difficult to phleb this woman (in her forties) becasue the blood was so thick. Not sure of her SF. Surprised she didn't stroke out or have a cardiac arrest.
Has anyone had such a high hemoglobin at diagnosis? My SF was only 369 and my hemoglobin was only 14.9 at diagnosis.
I have never heard of someone having that high hemoglobin. The nurse mentioned it was very difficult to phleb this woman (in her forties) becasue the blood was so thick. Not sure of her SF. Surprised she didn't stroke out or have a cardiac arrest.
Has anyone had such a high hemoglobin at diagnosis? My SF was only 369 and my hemoglobin was only 14.9 at diagnosis.
My hgb is in the 14's now that I haven't phleb'd in 4 months but it dropped to the 10's when I did twice p/week which is the lowest my doc allowed (due to the ferritin being so high). Many HH'ers docs won't let them get below 12. Mannnnnnnn... had that been the case with my doc, I'd still be phleb'ing for prob 5 yrs or MORE!!
Here is what I found on hgb 'norm's:
http://www.mayoclinic.com/health/high-hemoglobin-count/MY00112
re: the doc's office... I hope they have the other patient on some form of blood thinner, whether it's an enteric coated 81mg aspirin or something else. Our thick sludge makes it difficult for our hearts to pump it thru our body and we def don't need to have a heart attack or stroke!!
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zzzdj, did you notice that HH is not listed on that link? One time I did get down to 12.0 when the sf was 6. Usually it's between 14.0 to 15. Unfortunately that other patient has breast cancer and is being trated for that. Now she's anemic but the nurse didn't say what her iron levels were.
r. Houlihan, wow! Do you take a lot of fluids prior to phlebbing? Are you still taking Plavix and aspirin? I only use fish oil and red yeast rice capsules to keep the blood thin. I blew it this week because I didn't take a lot of fluids before phlebbing. I didn't think I was going to be phlebbed. I have very bad veins.
Post what the rheumatologist tells you about the high hgb when sf is good. My hgb stays around 14.5 to 15.0
yeah, I had Google'd the high hgb and was just using that link as a ref point for the elevated hgb, not HH related.
birkita,
Ugh, that just makes me twinge.... multiple sticks:(
zzzzzzzz
scroll down to 'precautions': http://www.umm.edu/altmed/articles/flaxseed-oil-000304.htm/
and for fish oil and red yeast:
http://www.livestrong.com/article/537711-can-fish-oil-red-yeast-rice-be-taken-together/
for natural blood thinng foods (and/or contraindications):
http://www.livestrong.com/foods-that-thin-blood/
zzzzzzzzz
Long ago, I was in ER once with wet sounds in lungs (pleurasy). The ER nurse had to take blood twice because my blood clotted fast before they could spin it.
Do you ever spontaneously bruise? This doesn't happen to me much, but when it does it really hurts. It usually happens on my wrist or on a finger. Pain, redness and swelling and then a dark bruise. Weird, huh. I have been told I have the Hct. and Hgb numbers of a man. suzq.