Posted , 7 users are following.
Hello,
Can you tell me how you felt after you were de-ironed? Also include the number of phlebotomies it took to get to maintenance phase and where you iron levels were when you started? Thanks so much for your time.
1 like, 20 replies
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philx abookreader
Posted
Hi
People can give you info on getting to maintenance stage,but this
Could give you unrealistic hope,what works for one doesn't mean it
Could work for another, Glyn could well have asked this question a long
Time ago,but he is still going,and no end in sight,
Just take your treatment one at a time till you reach your own target
No matter how long it may take, then you will not be disappointed???
Good luck
Philx
garrett82 abookreader
Posted
abookreader garrett82
Posted
garrett82 abookreader
Posted
every two weeks. they take a lot out. but i promise you'll start seeing results fast. first month is rough. after that youll feel a lot better. not sure what phlix is talking about, but i was in there with others with it. just listen to whatever your hemo says. i was a totally different person
garrett82
Posted
philx garrett82
Posted
Hi Garrett
What don't you understand ,someone can state it took them 3 months
To drop from a certain level provided it drops each time, but it can go
Up as well as come down, I've had 1 go up 242(could be due to overindulgence)
1go up by 179,another 1 didn't move at all,some dropped from anything from 10
To 219 ,I started at 1479 on the above how could I possibly put a time
Frame on how quickly I would reach maintenance stage ,I still have
679 to drop,if I remember right mike was 2000 took him 12 months
I mentioned Glyn he started over 5000 he is still going .illness affects
Levels falling, totally unrealistic to put any time frame on this condition.
Cheers philx
Mrs._Z abookreader
Posted
Agreed that we are all different and each of us has there own schedule on being deironed. I may have been one of the fortunate ones......Diagnosed last Oct. and started with weekly phlebotomies and was deironed by February. I was also fortunate with the symptoms since I never had many of the symptoms people on this site speak about. Since being deironed, I had one phlebomtomy in July. My last blood test was in early November and my ferritin was at 78. My Dr. said I was ok until Feb. During the course of being deironed, I would get upset when the number went up and my kids kept telling me not to look at because it will take time. So, don't get your expectations too high and go along with the plan of continuing the phlebotomies. The results can vary from week to week so it's easy to get misled. I took hat the whole needle thing which was the most difficult part of the treatment. Stay positive and keep following the orders from your Dr. Good luck.
garrett82 Mrs._Z
Posted
abookreader garrett82
Posted
ive had 4 phlebs this year. My regular doctor said do phlebs every 8 weeks. so I did three of those starting in june and did one every 8 weeks. Then went to specialist hematologist who said no they need to be done very other week which i started doing one week ago today. nexct one is next week. What Ive noticed is Im more tired than before and have more aches and pains I think due to the more frequent schedule. Like crazy calf cramps and shoulder aches etc etc and Im fairly young (in my 30's). U have anything symptoms that sucked? Thanks for your help....
garrett82 abookreader
Posted
abookreader garrett82
Posted
Thanks dude appreciate your help. Im where you were like "is this supposed to get better??? they got my blood out!" haha
sheryl37154 garrett82
Posted
I agree with Philx on this. I was left undiagnosed for 9 years with severe symptoms, till my hips broke up from my blood being so thick with iron, it could not get into the fine capilliaries which feed the bone. I also had left side chest pains. My de-ironing was long and many.
I was highly motivated to get that toxic stuff out of me so happy to turn up for phlebs. Sometimes the levels went back up - usually caused by an infection, a cold, etc. My symptoms and complications caused by such a delay caused me to have to give up work. 27 years after the onset of symptoms, I still feel them. Although I loved my job, there is relief from not working. It makes it easier.
There is no fixed formula. It is said we lose 25mcg of iron per phleb - that is 1x50mm nail. Based on that it takes 4 phlebs to remove 1 gram of excess iron (4 nails). A person with with moderate iron overload may have between 4 and 10 grams of excess iron, which will take between 16 and 40 venesection to reduce to normal levels. Severe iron overload may be up to 40 grams of excess iron which will require up to 160 venesections to reduce to normal levels.
Then there are those whose TS% is always high, which means they are loading more aggressively than others.
So, how long is a piece of string?
garrett82 sheryl37154
Posted
sheryl37154 garrett82
Posted
Hi garrett
It also depends on whether we are homozygous C282Y, homozygous H63D, or combination of both. I am curious as to what you are to get such good results, as well as the early diagnosis.
As I always say Haemochromatosis is better than having to have chemo. What we need is to educate ourselves as there are a lot of drs in denial and ignorance on this.
From an earlier post, it sounds like abookreader's dr was rather ignorant, only prescribing 8 week phlebs. He has since looked it up and found that weekly is correct. It is important for abookreader to educate himself too to make sure he is getting the most appropriate treatment, as his dr is only learning as well.
garrett82 sheryl37154
Posted
sheryl37154 garrett82
Posted
Hi garrett
It also depends on whether we are homozygous C282Y, homozygous H63D, or combination of both. I am curious as to what you are to get such good results, as well as the early diagnosis.
As I always say Haemochromatosis is better than having to have chemo. What we need is to educate ourselves as there are a lot of drs in denial and ignorance on this.
From an earlier post, it sounds like abookreader's dr was rather ignorant, only prescribing 8 week phlebs. He has since looked it up and found that weekly is correct. It is important for abookreader to educate himself too to make sure he is getting the most appropriate treatment, as his dr is only learning as well.
sheryl37154 garrett82
Posted
What medication are you on? - there is no medication for haemochromatosis unless you have a complication from it which is being treated by the medication. If it is too personal, no worries.
Hmm, how did I repeat myself???