Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hi all, well after two years to diagnose me I am now going for my first venesection today, I used to be a blood donor so I dont expect any problems this week ... next week may be a different story.
Can any one tell me what effet having weekly Venesections has on them, are they more tired? hungry? thirsty?
I had to push my liver specialist to refer me to a Heamatologist, he was going to leave me for a year to see if my ferretin went from 700 to over 1000 and he would then suggest treatment, My Hematologist was appalled as a liver MRI shows iron deposition already and she has started my treatment within 5 days of seeing her. So push those consultants I am sure they would want treatment if it was them that had the high ferratin levels. I will kee posted how teh venesection affect me and my ferretin levels, my heamatologist wants to get it down to under 50
sp I am not sure how long that will take, that is provided that I can stand the weekly sessions.
Good luck all, remember you are not a number on their case load you are a person and the sooner you start treatment the less issues you will get.
Regards
Steve
Can any one tell me what effet having weekly Venesections has on them, are they more tired? hungry? thirsty?
I had to push my liver specialist to refer me to a Heamatologist, he was going to leave me for a year to see if my ferretin went from 700 to over 1000 and he would then suggest treatment, My Hematologist was appalled as a liver MRI shows iron deposition already and she has started my treatment within 5 days of seeing her. So push those consultants I am sure they would want treatment if it was them that had the high ferratin levels. I will kee posted how teh venesection affect me and my ferretin levels, my heamatologist wants to get it down to under 50
sp I am not sure how long that will take, that is provided that I can stand the weekly sessions.
Good luck all, remember you are not a number on their case load you are a person and the sooner you start treatment the less issues you will get.
Regards
Steve
Well everyone at the hospital, me included thought that this would be an easy quick episode as I am a former blood doner so there should be no issues or suprises.
How wrong was I, I told them that I am a fast bleeder and that it would not take long to complete the venesection.
The nurse was supprised at the speed as she had not finished writing my details on my sample test tubes before I had finished giving the 460 ml of blood.
Then the fun began... the nurse asked if I was ok, as I looked pale, I replied that I felt faint. They checked my blood pressure and it was 77/44 with a pulse of 47.
I had given the blood sitting up in a chair instead of normal donation where I have been laying down, so I dont know if this was the cause. The kept monitoring me and eventually decided that they would have to put me on a drip and give me fluids.
After about an hour and a half I was feeling a lot better but I coulf not have driven home, so it was a good job that they had advised me to have my wife with me.
They want to continue next week, but will lie me down and constantly monitor me to check that I am ok.
They also now want to do some heart checks as well.
So I felt better over the weekend, but giving a normal donation has never effected me like this before.
I will update this after my next venesection on Wednesday this week.
Regards
Steve
Keep us posted how it goes next time..!
I had my third venesection today.
Just got back from the hospital, and they had my recent test results, my ferritin level has now fallen to 480.4!!!! it started at 675 so that is a great result, and that is after only 2 venesections.
No wonder that I am starting to feel a bit better in myself, my hip that used to be like toothache, I can now barely feel any pain in. The brain fog also seems to be lifting and my mood is a lot brighter. I still feel tired but I don't think its quite as bad, walking is still an issue its like wading through water. But it is early days yet so hopefully this will get better as well.
Glad today's venesection went well and that's great news about the reduction in your ferritin! Let's hope the walking and tiredness improve as you go. when is your next treatment?
I am scheduled to go every week for the next year if they feel it is required, but with the results so far I am hoping that my level will come down more quickly than that.
However today Thursday 30/01/2014 the day after my last treatment I feel very tired and very hungry, I overslept and I cannot stop eating!!! not good for my diet!!!
I have been getting Phlebotomies for 8 years now without a problem but I went in yesterday as usual but a couple things went wrong and it sent me for a loop. First they normally take out 500ml but the little computer malfunctioned and they filled the bag so full that the blood just stopped flowing, so when they went to take the blood for test they just sucked air out out and colapsed the vein. Felt it throughout my whole body. My BP dropped as he said (In the tank) and I went loopy. Aparently then my body pumped a good dose of adrenaline in and I could not catch my breath. It was about an hour later when I felt good enough to leave the hospital and I had a hard time taking deep breaths all day. I felt fine today though. Normally I have no problem at all and I phleb once a month, but one just never knows, but you are not alone it happens to us experienced HHers too. :-)
Thaks for your reply, its good to know that its not unusual to feel unwell after the Phlebotomies. Just had my 4th with the same sort of results.
Other good things are that my hip pain seems to be a thing of the past, although if I turn suddenly I still get a bit of pain, but I can live with that.
I seem to be suffering with more cramps than before, particularly in the fingers and shoulder's, strange that.
The burning feelings in my toes and fingers does seem to be easing and is not quite as bad when it comes.
My wife says that I am a lot more cheerful and more like the old Steve, so thats got to be good.
Thanks to everyone who has sent me comments and good wishes, we are all in this together an it sure helps to here other peoples comments and observations.
Best wishes to you all.
Steve
It's great to read that you are more like your old self :-) I wonder if the venesections disrupt the iron in the places where it's stored and perhaps cause some new temporary inflammation and pain? Or maybe the pain is caused by the healing process from the inflammation that's already there, and will improve over time. I hope this is just a short-term thing anyway, and gets better very soon.
Thanks for sharing how things are going!
I've been checking and reading stuff on YouTube and the web by Dr. Mercola and Dr. Stephen Sinatra. Basically they are saying if you take Krill Oil (for the brain and joints) and Ubiquinol , L-Carnitine and Ribose for overall cellular energy and liver boosts, you'll notice an improvement. I tried it and I felt quite a bit better after only a few days. My ferritin was up to 1350, but after 7 months of weekly plebotomies I'm now at 65. Still I have the arthritis, heart palpitations and liver damage, but this stuff is helping. Check them out you may want to try this stuff after you hear the YouTube vids.
Thanks, I will look into that and try and watch the youtube tonight.
Regards
Steve
The burning stinging pains in my feet and hands are easing and not quite as bad when they do hit me.
I am still very tired and suffering from fatigue but that may also be down to the plebs. I am still short of breath, that should be a laugh as the hospital have me booked to do some heart function tests involving a treadmill, so I will be getting off that after about 100yards!!! The also want to do a heart scan as I have an enlarged heart and have had it for a number of years but before diagnosis they used to say "thats just you and the way you are made"
Today is the day after the pleb, and as before I could eat anything that is not moving, I am also very tired and very thirsty.
But as I said earlier in teh mail, my Ferretin is coming dow faster than I expected, so I hope that this will continue.
Does any one wear a Medic alert bracelet or necklace, as I have been told that it may be a good idea so that if the worst happens my condition is quickly recognised and I am not mistaken for a drug user with the scars on my arms.
Will keep posting about how my treatment is going so that others know what to expect.
I stopped donating blood a few years back as I could no longer bear the sensation of the needle... now look Im having needles every week!! ah well thats life I guess and its better than the alternative and a small price to pay.