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
Where did you have the tests for metals? What specific tests?
Thanks.
Mike.
Thanks for sharing your experiences it all helps to show that others are going through the same things that you are. Hopefully I am nearing the end of my de-ironing journey and will be put on a maintenance regime, I have to discuss my results with the Heamatologist shortly.
Looks like my sone has HH, his Ferritin was around 300 cant remember the exact figure but he is now to have a genetic test, my daughter is now to be tested after she gave birth to our 1st grandaughter last Wednesday, my wife is also to be tested to see if she is a carrier.
leigh, hope you've sorted your phlebs schedule. what i forgot to mention is the obvious - the further apart the phlebs the longer it takes to get your iron down,keep them as close as you can WITHOUT killing yourself. i pushed it to hard and nearly died. i was in hospital for 12 weeks !
all the best to ALL HH sufferers
mike kenmir.
Steve, I'm sorry members of your family may suffer HH, too...I've tried to get my brother to test, but he won't. I'm late in commenting, but perhaps you'll post the outcome of your families tests?
My son looks to have HH and is just awaiting the results from his genetic test, My daughter has jus given birth to our grand daughter and her docs want her to wait a bit beforeshe is tested to let her bloods settle, and my wife is also awaiting the results of her genetic test to see if she is a carrier or worse as fathers family have a historyof eithr early heart disease or just dropping dead.
I am de-ironing nicely and should be on a maint regime very soon.
I have become a bit evangelical about HH and am currently trying to arrange some awareness sessions at my company, we have 32000 staff so thats 160 who are likely to have teh condition and lots of possible carriers, I hav a meeting this Friday to see if we can
hold some sessions with a speakerfrom the British HH org and I expect to give my story as well, if I can save one death from this then it will be worth it.
Sorry for the long reply.
The HH seems to have triggered Atrial Fibrillation and arthritis in my case. So, once the Ferritin was down to under 50 from getting plebs every week for 8 months, I had a naturopath suggest I get heavy metals checked with a chelation EDTA challenge. Basically, you do one intravenous EDTA chelation session and analyze the urine to see what heavy metals are coming out. If you have any coming out, keep getting the chelation. In my case, I had lead, aluminum, cadmium, aluminum and others. So I went on weekly chelation treatments. I've had 20 so far.
Like the phlebotomies, after each one, I felt a small but noticeable improvement. Now after having 20 the improvement in arthritis and my heart stability is amazing. Now I rarely go into afib and I don't need to take the medication every 8 hours now - only if I am in afib.
So, I say check your other metals too. Another doctor I saw who didn't specialize in HH, but was very familiar with it due to many of her family members having it, suggested to get chelation as it would take the iron out of my heart tissue. She was not sure about it, but I found it well worth trying.
The only drawback is that it costs $105 per treatment (where I am in Vancouver) and an additional $100 per analysis. So I do the analysis after every 10 treatments. It looks like I'll need about another 5, then I'll give it a rest for about 6 months. I've also heard that once you get the metals out by chelation which does work on body tissues such as muscles, more metals will slowly seep out of deeper areas in your body.
SO CURIOUS if anyone else will... AND... If others will give interesting reports on chelation!