Posted , 4 users are following.
Hello all, I am a 54 year old male diagnosed 2 years ago. I have been on weekly phlebotomy for one and a half years and even tried twice weekly for a couple months (too much for me), I can not get my ferritin level to move in a downward direction. My ferritin levels bounce around from 7500 and 10460 (highest level). diet is low iron, no suppliments, blocking as much iron as possible, any ideas? thanks.
0 likes, 8 replies
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scott46839
Posted
I do monthly blood test monitoring also.
tom_70042 scott46839
Posted
Scott
I wish you well you need to insist on having this properly investigated could be you have an underlying infection that needs attention Your ferretin level is very very high and Vs should knock 50 0ff every time
weekly vs i know awful and twice a week i feel for you i had weekly for nigh on 6 months and was wiped out
insist that the hospital do a series of investigations to find out why there must be something oreventing de ironing
GOOD luck
sheryl37154 scott46839
Posted
Tom is right - it sounds like you have some infection, inflammation, malignancy going on - something that is not curing. We assume you are not drinking too much alcohol, in fact with your problem - it should be no alcohol at all until you have reached the de-ironed stage. You have to be assertive to have this investigated, or move on to another dr/haemotologist.
With regard to low iron diet, you are not doing yourself any favours. I hope you Hb is kept at a good level to accommodate all your vx. If not, resume normal eating of protein and green vegetables. You can eat red meat, just not every meal. Eliminate sugars and starchy foods from your diet - this causes fatty liver which in turn increases your ferritin levels. Vit C with meals increases uptake of iron. Calcium with meals is the only proven iron uptake reducer. However, it can reduce your intake of other minerals too, so just be aware. My husband and I (both homozygous) generally have cheese or yoghurt for desert, but we do not depend on it being a great iron reducer - just instead of something with sugar. Vx is the only successful form of elimination of iron from the body.
What is your transferrin saturation %? If it is really high, this means your body will uptake lots of iron. There is nothing you can do about that except to continue to have those vx. I am guessing you are homozygous C282Y. ??
deb94549 scott46839
Posted
Hi...I was at 3175 and did weekly vampire visits for a yr n half....what I found to help was taking prilosec. Also take calcium and eat eggs. No vitamin C or betacaratin. I am now at 43. Ask your hematologist to put you on the 40mil RX.
scott46839
Posted
Thank you for the replies. I am the definition of inflammation. I'm in pretty bad shape. I'm afraid my ankle, knee, and hip aren't going to make it much longer. I'm at stage 3b kidney failure, heart failure, MRI shows abnormal contour of liver, possible cirrhosis. Every joint in my body is in extreme pain (we have a whole lot of joints I never knew of). Transferrin saturation is 94% and yes I am homozygous C282Y. I am currently without a PCP and searching for a new one because the last one said I was too much for her and she didn't want to be responsible for making an incorrect decision. I've had I think every test and scan there is and it all comes down to phlebotomy but it doesn't seem to be working.
sheryl37154 scott46839
Posted
Now we get to the crux of the problem. Your ferritin will not go down with all those inflammation problems. They need to be treated asap. You really need to get your kidney, and liver attended to, and whatever can be done for your joint pain. You need more than vx.
Haemochromatosis researchers have found that vx does not reduce joint pain, but there are anti-inflammatories. Do not use proton-pump inhibitors as they are meant to be only short term use for reflux, and long term use will cause a whole lot of other problems, including reducing the uptake of other important minerals.
Your immune system is probably up the creek, so you should not take any risks.
scott46839 sheryl37154
Posted
Thank you for the info. I was using Prevacid daily until I read your reply so again thank you.
scott46839
Posted
Last month ferritin 5448, this month >100,000 what is going on?