Have been having phlebotomy every two weeks since Nov Ferritin originally at 1000 At end of Dec 525 at end of Jan460 at end of Feb 330 Had 1 phleb in mid March then delayed re virus/travel/ isolation period blood test April 8.....ferritin 530???? I am devastated...how can this be? no illness, no inflamation.....all other blood results fine....any ideas or similar experience?
No textbook results exist, I am afraid. You were losing a lot previously, then missed a vx, so you gained a lot. Most people are all over the place. You just have to relax and go ‘with the flow’ so to speak. Don’t be so hard on yourself.
Like almost all, I will be missing my vx due next week, but at least I have long reached <50, but any increase for me results in arrythmia and chest pain. So I will just have to wear it.
Dont be too hard on yourself have a bit if a holiday from vx as its probably very risky to attend hospital at the moment
Your levels do bounce about a bit but its not ridiculously high
i used to worry about levels a lot until i took the advice from Sheryl she is the best fountain of knowledge out there
stay healthy
TOM
Appreciate the input, but seeking actual experience and numbers not unsupported theory. I dont see how I could simultaneously be losing a lot and gaining alot. My rate of loading at diagnosis was about 10 ng a month. My levels dropped from 1000 to 330 so a large portion portion of my iron burden was gone, gone, gone.
Mine is actual experience not unsupported theory. I have had vx for 21 years now and kept a spreadsheet. The levels went up and down like most people’s do. If you want supported theory, you need to read a lot of medical research as you won’t get it from blogs and forums.
realize of course that numbers fluctuate…but your comment
" you were losing a lot …so you gained a lot" is a questionable theory.
Would be more than interested to know any numbers you experienced that support that theory …or of any literature that supports that theory.
I didn’t call it theory - just personal experience. You will have to search for your medical research yourself, just as I did a long time ago and it is not at my fingertips.
My spreadsheet is too large to upload. I found that it became necessary to give up on trying to control as we cannot control it other than continue to vx treatment.
Perhaps if you want to be picky, I should have said “AND you gained a lot”. I told you there are no text book results. That is how YOUR body reacts.