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.

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Maintenance

hougl
hougl
Can I ask how those of you who are in maintenance work out when you need a phlebotomy.

Do you become symptomatic or is it purely managed by your blood results. How often do you have your bloods checked?

My new plan is to have my Hb checked every 6 weeks as it seems that when this goes above 11.5, I become really symptomatic, even though my Ferritin is always less than 8. My doc says that I absorb every bit of iron and that I am sensitive to it so although my ferritin is low which is great in terms of preventing organ damage, managing this condition is like being on a roller coaster with a very short period of time in between the highs and lows. I am really struggling with it. I am waiting to hear if I can have another phleb now ... ... eagerly sitting by the phone waiting for the calling ... ...

Interested to hear how others manage it. Thank you
deleted_user
deleted_user
In the beginning and during phelb treatment I was addicted to them but once I went into maintance phase my body would say yes but the numbers would say no .Some people go right into maintance smooth sailing but others as myself go through one long year or more of trial and error ,it also helps having better educated docs ,in my case I was my hemotologests first hh patient so I relyed strickly on this group to help me and the one most important thing I learned is you have to be aggressive with your doc at times. My ferritin was over 1500 and doc wanted to phelb every two weeks and I wanted ever week so we comprimised for ever ten days ,I did that for a year ,whew ,would have been longer ,this group has been my world and this combined group to me is more educated than most docs when it comes to treating hh .
hougl
hougl
Thanks Queenie. That's interesting. My doc says you can become venesection-dependent. I know that if I don't have a venesection when I become symptomatic, I just get worse and worse and worse. I have the venesection and then within a couple of days, I could run a marathon! Sometimes I can go 3 or4 months in between, sometimes I need four or five weekly venesections before I'm feeling well again. I note zzzzzzz has her treatment every 3 weeks - if you're reading this zzzzz, what is your Hb like (I know you keep your ferritin around 20)?

Queenie, when you say 'your numbers would say no' was that your Hb or Ferritin, and what numbers were they?
deleted_user
deleted_user
hi hougl, no I'm at 88 as of Dec 30th but will have another ferritin done next week, I think. I want to go to 20-30 and my doc prefers 50 BUT I'll convince him. He's been very easy to take to and does listen to me. After this next ferritin comes in, I probably will do phlebs in 3weeks and then start playing with how often I should go in. Now my hgb stays around upper 13's or 14's. Haven't hit 15 yet.

I'll keep ya posted as we see what happens:)

zzzzzzzzz