Just had a letter from the consultant this morning. he has suggested I have weekly blood donations as the ferritin level is not gong down and I got fed up with this and said I would only do monthly blood donation. That didn't change things either. But now, he said, give weekly a try and I am talking my ferritin level is in the 3000 ballpark, so, very high and perhaps there is another reason for this being so high. I will also ask for a CRP test, whatever that may show. There must be a reason why there is no change, despite almost sixteen months of giving blood fortnighly. Anyone giving blood weekly, I would like to hear if this has made a difference, Glyn
Hi. My level was 2000 last year...v high. I had no choice but to go weekly for a year! At 3000 many patients would often have to go twice a week initially. Your no 1 priority is to get that level to 50!! Ferritin level that high could start doing some serious damage. Get going once a week asap. I reached level 21 a few weeks ago! Finally got there after a year of going weekly. Now I'm a blood donor and will go every 6-12 weeks to keep level low.
Once a month for you is no good. Please start going weekly!! Keep us posted. Drink loads of fluids before you go, and after...really helps. If you need some diet tips, let me know...
Cheers. Mike.
Hi. In Feb 2000 i had a high Ferritin level of 3500, and was told i had to go Weekly without Fail. It took about a yr and half to get it down to 50 ish,. Leave it to long and you will start to encounter several problems.
You must have quite a few side effects even now, Fatigue,Aching and Swollen Joints. Possibly even many more. It will be worth the time it takes for it to go down. Of course, try and keep away from High Iron content foods.
Cheers. Mike.S
I totally agree...being diagnosed with just under 1000, it was Dr.s recommendation I go one time weekly. I less than six months I was down to 38. After four months on the maintenance program, it did go up to 91, which meant I had to again go for a blood draw. I will now explore the blood donation option. Good luck and hope that weekly changes your outcome.
Hi Glyn
Firstly I would imagine you are quite unique, where your levels don't
Drop after extraction, and I am truely glad I am not in your position
And cannot imagine how you are feeling???
My levels were 1130 before weekly extractions (I've had 3 now)
And I am pleased with the way my levels are coming down, I am not
Going to get complacent, as I asked this question and mike replied
Where he said his levels dropped by different degrees some weeks
Between 10-40-100 so I will take each week as it comes and how ever
Long it takes,in your situation I would keep asking for other opinions
There has to be an answer to your situation, keep sending letters to
Different hematologists in this country and other countries, they may
Know something your specialists don't know
Very best of luck, and please let us know the outcome.
Cheers philx