Hi -
Im going to start giving blood every 2 weeks starting this weds. I was doing every 8 weeks but the doctor wants more. Ferritin was 602 now at 411. Iron is at 262 as a bunch of stored iron came out (hence going from 602 to 411).
I am not a medical person and I dont care too much for blood. I know you need it to live.
How much blood does a person have in their body? I'm a male 6'0, weigh 215.
Is every 2 weeks no big deal for a body to give a pint of blood?
Thank you.
To explain a little more: I should add my Iron was 162...My ferrtin was 602...I had my 3rd phlebotomy and the ferittin went down to 411 and the iron in my blood went to 262.
Weekly is best to get down as quickly as possible. Bi weekly is fine given you're only at 411 (organ damage starts at 1000). I'm on maintenance now after doing weeklies. Maintenance is every 8 weeks for me. Every 8 weeks initially would have taken forever to get it down.
The body has about 9 pints of blood in it. It replaces a pint fully after 10 days from letting it out. A majority of it is replaced in the first 24 hours
Yeah thats what the doctor said - I have to move to a quicker schedule in order to get some movement on my numbers. Did you feel better once you were De-ironed?
I did. Make sure your doctor is giving you some B12 shots during the same week as a phlebotomy. You'll feel better also from those
I regularily take a Super B Vitamin that has all the B's in it. Is that enough?
If you have classic haemochromatosis, i.e. homozygous C282Y or H63D, or compound of two, it won't be a problem for you. Most of us start weekly. With haemochromatosis, our red cells regenerate quickly.
If high ferritin levels are from fatty liver, or other inflammation instead, you may not be able to cope with it. Your TS% (which you did not mention) is a telling marker - if it is above 50% for male, it is classic haemochromatosis.
I am homozygous so thats good. Usually my hematocrit is at a pretty good level each time too.
Some people cannot absorb B12 in tablet form, so an injection is required. A B12 blood test will reveal.
So, no problem. My body loves having a venesection, although after 26 years, my veins do not.
well I like your boldness! I wish I was that way. I hate doing it every time without fail.
I look at it this way - better than chemo! Besides, I want to get that toxic stuff out of me! It was killing me.
"Organ damage starts at 1000." This is stated on many websites but when I mention it to my GP or consultant they seem unconcerned. I waited 9 months for treatment despite ferritin of almost 1500.My ALT was only slightly elevated and my scan was okay so perhaps that's why they were relaxed about it .
There is more to it than the liver - heart, pancreas, bones, brain, hypothalamus, pituitary gland - loss of libido, impotence, shrinkage of testes. I had 9 year delayed diagnosis due to denial on dr's part and google not yet invented for my part. Lots of damage, except for liver!!!
It makes me wonder why they keep us waiting so long for treatment then.Just for the record my ECG and pancreas/diabetes readings are all right.Libido okay but slight brain fog and joint pain.
Ignorance? Denial of haemochromatosis complications? A lot of drs deny the damage it can do - they only read basics. Or too many patients and insufficient drs?
It could depend where you live. As you would have read, some people get reasonably quick treatment.
A ferritin level of 1500 is way too high to be left untreated so long. Have you contacted your local haemochromatotis association?
I've joined the UK Society but not told them about my wait.I'm just glad I've started treatment at long last.
The societies do need to know these things, so that they can try to do something about it, if not individually, but as a whole.
Please.... I am 5'3 weigh 120 lbs, am a female.. I have gone every two weeks for a year. You need to get your numbers down. Every two weeks is no big deal.