Maintenance Program for Hemochromatosis

All the best.

Mike

Have you worked out how much, if any, you were loading between venesections?  Or did you notice by how much you were reducing your ferritin level each venesection, or, as you would not have been tested every time, every period you were tested?

At one point I was down to a ferritin of 8.  I did not feel bad for it.  13 a couple of times too.  I prefer to keep well below 50, say about 34, then about 24-25 is added by the 3 month period, and that is how much is generally removed when I have a venesection.

If you have not already done so, try to get a copy of all your results and venesections and keep a spreadsheet record.  Make a note of when you feel best.

But I noticed that when my level has gone down to 22-24, my TS% finally reduced from toxic levels.  That happened after I started taking 100mg aspirin per day.  But it was back up again prior to my last venesection, so maybe my body has adjusted to the aspirin and gone back to its old habits!!!

I think regardless of what the "norm" is, for we HH people, we should keep our levels low.  Different for everyone of course, some might feel better with a higher level.

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Thanks for all that. I actually feel really good anyway...have done most the time. I run, walk for miles. My only symptom is the iron fist. That's still the same, but pain has really eased. My venesection levels sometimes went down by 100 or 200...especially when it was much higher. More recently it goes down by 25, or 20..last week by 10. I do notice that they take make less blood sometimes as well, which of course makes a difference. Most other patients I've spoken to have all been going for a year or so as well..so seems quite normal. My level was 2000. Theirs is sometimes 3 or 4000 initially. They get the level to 50 at my hospital, then tell you to become a blood donor. I've registered now...have my first one in July! Will be nice to finally donate blood than have it binned! Once I'm at 50 with the hospital, they'll monitor me every few months for the first year to see how many I might need a year. They say average is 4 times, some more and some less.

As I say, with me I do feel very good, keep active, eat well...very little meat, fish, brown pasta and rice, plenty of calcium and tannins in tea...take supplements of turmeric, green tea extract, IP6(read up about this) quite amazing stuff...most powerful anti oxidant...natural...and from Japan...can get it on Amazon.

Even when diagnosed at level 2000, apart from painful joints in hand I felt great with running, Karate etc....so, hope to carry on feeling fine.

I've learned meeting all the other patients that it's so individual this condition. Some people's levels are 600 and they have liver issues or extreme fatigue that they can't get out of bed for days on end. I feel I've been very lucky so far.

Thanks for taking the time to chat....has been so helpful chatting to folk, and joining the Haemochromatosis Society....

Cheers Mike

Thanks for that.

I only go by what other patients tell me. I work with a colleague who has hh. He's been going four times a year for the last six years. His level stays below 100. The Haemochromatosis Society say that most their members go about 4 times a year. I'm told it's so individual this condition. Some go once a year etc. My doc says I'll be monitored for the first year where they can work out what's best for me. As a blood donor I can go every six weeks, and that's going to be my plan initially...and over the year if it works out I need less, great. If I need more, then the hospital will do a couple too. It's such a journey all this...finding out new things daily. The main thing with me is that apart from my knuckle pain and iron fist...I've been feeling really good. Running and walking regularly, changed my diet...very little alcohol.....

So, I'll start off six weekly and see how it goes. Even that will be luxury compared to every week for the last year! My poor, scarred veins!

Chat soon...😃

Mike