Hemochromatosis Support Group

hi Strype, everything is going well with me. I still get phlebbed every three weeks and most symptoms have never returned. My joints in my fingers will start to ache if my ferritin gets over 50 and it is 39 now. The heart palpatations never went away I have atleast one every day. I think I am thinking clearly most of the time although my husband might argue that lol. I remember feeling a lot better after i stopped the weekly phlebbs and my numbers were low, I hope the same for you. I am wondering if your not feeling well again because your ferritin might be to low. I have heard that from others. I don't know but you should not be feeling bad again from the HH it should be better.

Hi Strype
Yes, that achey bone tendon thing is a pain and seems to flair right before phlebotomy time. I did leave NY for South America this winter, Buenos Aires, where it is today 82! They also have major research here on HH, can you imagine? A third world country has more research than the USA! Getting phlebes here is also zero problem, they do not consider HH to be a stigma at all, so modern. I also do tend to get palpitations no matter what the weather or climate and find that taking a very small dose of alprazolam does the trick. Why suffer?
Keep warm!
GageL

Hi Strype,
I have my ferritin checked next fri, the last time 3 months ago, was 59. I am excited. I hate winter! All my joints that have been affected hurt, but not as bad as 2 yrs ago! I have very few heart palpitations now. The fogginess is definitely better and I have zero stomach pain and gastro probs.I actually feel alive now! I have been having monthly Phleebs, after this next test, I guess I will take a break for 3 months, and then go back to see how much I've loaded.
Good Luck and thanks for asking,
Patty

Ferratin was down to 305, had another phleb. every 2 weeks for a few more.
Question? Why do we have to get down and stay down at 50?

For a lot of us that is when we feel our best. I like mine down to 20. when your ferritin starts rising then you are loading iron And those of us with HH will load faster than a normal person. I am sure someone else could explain it better.

Gidget is right on with that her response. When your ferritin is too high... your blood can't handle any more iron and the iron ends up getting stored in your major organs like the liver, heart, etc. This storage ends up distorying the organ over time.

-Keith

Gidget, you say you like yours down to 20? My last level (2 months ago) was 17, and I felt a bit better. I'd like to keep to 20 as well, but try telling my doc that, he says that's verging on anaemia! Frankly, I'd rather have too little than too much - iron that is :-)
Time I asked for a second op methinks...

Gidget you cheer me up, you're always such a positive person.

Andrea, I do like to keep mine below 20, unfortunately it doesn't stay there very long but I try. I notice my fingers start to ache when it gets in the forties and 50's. I will get a phleb every week in December to get it back down and then go back to every three weeks. My Dr sees my test results at every phleb but lets me do all my own scheduling of Phlebs, she says i know my body better than anyone and I should be making the decisions, I wish more Drs. were like her. Thank you for the compliment, I try to stay positive because I remember how bad I felt before I was de-ironed and now Is such a blessing to feel as good as I do. I also made a major change in my life by quiting a well paying job to reduce stress and i am so happy now. No amount of money would make me return to that situation. Life is good :-}

Been away from the list for awhile. Last ferritin on Sept 9 was at 14. Lab forgot to tell me and I've had two phlebs since. Arrhythmias have improved from thousands per day to something I don't even notice. Minor knee joint ache but not worth complaining about.

Boy am I glad to have found this group. Seven years of wondering where everyone else with hemochromatosis are and feeling like I am the only one around with it. I have biweekly phlebotomys to keep level down. Mine is at 34 and I am feeling better. I like to be lower but my latest oncologist does not want it any lower.
My question of the day for you all is do they use your blood in the state that you live in or throw it out? I discovered Rhode Island does keep it and reuse it so I am treated like any other blood donor when I go to the center. Feel a lot better about donating blood because it is being used again and not thrown out. Still have not figured out why the other states do not follow little old Rhodes Island example. .