Posted , 3 users are following.
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?
0 likes, 6 replies
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sheryl37154 jax15282
Posted
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.
jax15282 sheryl37154
Posted
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.
sheryl37154 jax15282
Posted
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.
jax15282 sheryl37154
Posted
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.
sheryl37154 jax15282
Posted
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.
tom_70042 jax15282
Edited
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