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.
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
it was like 3 months, but i felt like a new person. like i was 18 again. phlems were rough, wont bs there, but i hate needles. drink a lot of fluids and when its over, you will feel like a teenager. a week after my last one i was climbing a mountain and surfing in san diego. It wears you down, forget what feeling normal is like. if you have it all set up, youll be golden soon
How often were you doing them? every week or?
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
they acually stuck a magnet to my bag. best advice is to relax and joke with them, makes it go by faster. i went through it last spring and just had a blood test. everything is fine. just take whatever meds they give you
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.
agree 100% ^ first month levels are out of control. i got so mad inwanted to quit going. ride it out.
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....
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
yeah, like i said, overdose yourself with water. same for me for a while, but you will surely see a change soon. im 33, so around the same age. they are taking a lot out, put something back in.
Thanks dude appreciate your help. Im where you were like "is this supposed to get better??? they got my blood out!" haha
Garrett, you have been pretty lucky for your reductions and end results to be so good. It may have something to do with being diagnosed early. A lot of us were not so lucky. Maybe we helped pave the way for people to get diagnosed younger.
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?
I am very sorry to hear that, that sounds horrible. I was just trying to explain my deal and give you hope.
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.
i have no idea what the first part meant. as i said before, im in finance, so a lot of the doctor lingo flew over my head. but yes, it was caught early and it was rough for a bit, but im fine (with medication) now
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.
Did you have a genetic test to confirm? That would tell you what genes you carry. (I was in finance too.)
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???
Hi, I started with levels of around 700 and I had my first blood session in December and was 'normal' by April. To start with I tried weekly sessions but found it easier fortnightly but then went back to weekly once my body had adjusted. Eat and drink plenty of water before a session and I also found coconut water helped before and after the session. Avoid alcohol the same day as a blood session as you will feel the effects very quickly - it may be obvious but I really did not think and no one told me. You may also be more tired than normal after a session but by the next day generally OK but exercise may be more difficult. I like to run and a few miles feels like half a marathon. It's not all bad news as any symptons you are having will improve, I had crazy itchy skin and this has stopped and for that I am very grateful. I now just attend blood donar sessions every six weeks and this keeps me under control and it's for a good cause. In my experience the blood sessions were fine, a sharp prick but nothing major. I attended the Chichester clinic and the nurses were fantastic as they are at the NHS blood donar clinics. Good luck
Tired and weak the first day . Next day wake up with sore sides which I believe are the kidneys. Sore thru out the groin are . Tired and no energy for 3 days. Fourth day start to feel normal again !