Posted , 4 users are following.
just diagnosed....working on treatment plan. my levels ferritin 1100 TS 70,
asymptomatic. i weigh 115 lbs and not sure what my toleration would be. Did anybody with similar
figures have results with bimonthly phlebotomy? Any ideas on whether this would be effective?
0 likes, 5 replies
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sheryl37154 jax15282
Posted
Generally with a level of 1100 and TS% of 70, the vx would be weekly. Perhaps the dr is concerned that your weight may cause a problem. Otherwise it is necessary to maintain a level of Hb within the reference range. It is all trial and error, so all you can do is see how you go.
eric89660 jax15282
Posted
I am in the UK and I was diagnosed at SF 1,500 and TS 90% and my gastro put me on a fortnightly phlebotomy/venesection. I told him he could be as aggressive as he liked but he said it's best not to rush.
jax15282 eric89660
Posted
Oh, I like that answer. Do you have any followup ferritin results yet? Thanks so
much for your input...appreciated. W ishing you well.
eric89660 jax15282
Posted
It took me about 15 months of fortnightly vs to get down to SF 50. My TS% began to come down eventually but went back up to 94% a year ago. It's now 50% and I hope it stays there. My gastro wants me to keep the SF below 80 and I now give blood every 4-5 months. It's now 3 years since my first treatment.
tom_70042 jax15282
Posted
hello all again been a few months
Sheryl is spot on again
weekly vs way to go
heres my experience
august 2018 ferettin 1200
weekly vs until christmas left me wiped out
since then levels , 38,51, 68 no vs since christmas im much stronger but suffer with back and hip pain
golf days are gone but taking SHERYL advice never give up thought id never be able to travel again but been in USA and plan to he back in australia in 2020
my diagnosis came about after a pulmonary embolism almost killed me in jan 2018 just one brilliant doctor went the extra mile
you can lead a normal life have a steak and a beer
i am due tests again next month and imagine levels will have gone up but as long as now im in the range of 100 thats ok it was moved up yo that from 50 when i hit those levels
stay healthy all
cheers TOM