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 Everyone
I honestly dont know where to start but I am glad I have ended up here.
The last 5 years have been struggling with very painful joints and osteoarthrosis of the ankle joints. I have had a Total Ankle Replacement in my right ankle and my left one is just about just as far gone too. The right replacement has become loose now so a huge operation waiting. Last year October, I went to an internal surgeon for a check-up and he also had my blood drawn for a wide range of tests.
I have not heard from him again and decided to enquire about my tests last Mondayyes months after the test were done. It came out that my Ferritin levels are above 2000, nobody knows exactly how far above as the test only test to 2000. The doctor sounded concerned and advised me to immediately start donating blood. I have had blood drawn for the HH test last Thursday and I am waiting (10 working days) for the results. I tried to donate blood but the blood bank need a letter from the surgeon and I suppose he can only give me one once the result of the HH test is known.
I have a huge disgust in needles and that is not going to do me much good when I try to get my iron levels down.
I am not feeling sick or anything, little bit tired now and again but nothing serious, except for the joint pains I experience if I am not taking anti-inflammatory drugs. I am pretty scared of what may be head for me and the fear of the always present.
I was in an automobile accident a few years ago and my liver was heavily bruised, so much so that it was bleeding. I received 4 units of blood then, in 2007. I just hope that I do not have any organ damage. Everything feels fine.
I will have to be patient for a few days I suppose.
Regards
I honestly dont know where to start but I am glad I have ended up here.
The last 5 years have been struggling with very painful joints and osteoarthrosis of the ankle joints. I have had a Total Ankle Replacement in my right ankle and my left one is just about just as far gone too. The right replacement has become loose now so a huge operation waiting. Last year October, I went to an internal surgeon for a check-up and he also had my blood drawn for a wide range of tests.
I have not heard from him again and decided to enquire about my tests last Mondayyes months after the test were done. It came out that my Ferritin levels are above 2000, nobody knows exactly how far above as the test only test to 2000. The doctor sounded concerned and advised me to immediately start donating blood. I have had blood drawn for the HH test last Thursday and I am waiting (10 working days) for the results. I tried to donate blood but the blood bank need a letter from the surgeon and I suppose he can only give me one once the result of the HH test is known.
I have a huge disgust in needles and that is not going to do me much good when I try to get my iron levels down.
I am not feeling sick or anything, little bit tired now and again but nothing serious, except for the joint pains I experience if I am not taking anti-inflammatory drugs. I am pretty scared of what may be head for me and the fear of the always present.
I was in an automobile accident a few years ago and my liver was heavily bruised, so much so that it was bleeding. I received 4 units of blood then, in 2007. I just hope that I do not have any organ damage. Everything feels fine.
I will have to be patient for a few days I suppose.
Regards
Sorry to hear about your issues.
Your ferritin level does sound to be very high, they wont take blood in the UK for re-use unless you are on maintenance and your iron level is below or around 50.
Let us know what your HH test result is, and ask any questions on this forum, they are all a friendly bunch here, I guess that's as we all have the same condition.
take care
Steve
I just received a call rom my Physician, I am positive for Hemochromatosis. Not the result I had hoped for, but at least I now know where the high levels comes from and it needs to be managed.
Next step will be to consult with my internal surgeon and work out a plan.
So I guess... I am one of the lucky ones on this forum from now on. I hate needles...big time!
Regards
Leon
Test results say Positive C282Y/C282Y. Negative for H63D and S65C. Not sure what it means at this stage but I will have a discussion with my internal surgeon when he calls me.
Feeling OK after the first time.
It does get better and at least now you are being treated and should reduce the organ damage etc.
I was told that the full benefits are realised about 2 years after you have been de-ironed and are on Maintenance.
I am just coming up to that milestone and things are improving some of the pains that I used to have, have gone although some like my hip pain in my left hip remain, although I have just stated to use a "Tens" machine on my back and that does seem to be helping with the pain.
My liver specialist was amazed when I said that I can tell when I need a phlebotomy as some issues like burning in my toes return, I give the blood and within a few days the pain has gone again.
I do still suffer from the fatigue and I don't see that improving, the brain fog has largely gone and only shows when I need a phlebotomy.
Having HH is not so bad, it could be a lot worse... having it under control and managing the levels helps with my well being.
Please have your immediate family checked, after my diagnosis my daughter was checked and has HH, my brother has HH, my some is a carrier but is showing symptoms of HH, and my wife was checked and found out that she is also a carrier.
At least we know that they have this condition and can monitor and treat it when required.
Keep on with the treatment until and when you are on Maintenance, the alternative is not good.
Take care
Regards
Steve
Here is my experience if it helps at all. I was diagnosed almost by accident. My ferritin was at 950 and I had arthritis, especially in my ankles, but what had me complaining was my muscle tiredness and I had (have) atrial fibrillation (afib), I could barely make it up a set of stairs. I got weekly plebotomies for 8 months to get my ferritin to 50, which is the recommendation from my hemotologist.
Food is hugely affecting my arthritis. Most days I can't even walk a city block. I found a really good homeopathic Dr (I live near Vancouver BC and can give you his info if that helps). He found that the iron damaged my liver so I can't handle the foods I used to.
I now have to avoid: All dairy and dairy products, all grains, even the gluten free ones, all nightshade veggies to keep the arthritis under control and I have to eliminate caffeine to keep the afib under control. By choice I also eliminated all meat and bird but I do eat wild salmon, cod & other seafood. Lots of greens and have to have phlebotomies about every 3 months to keep the ferritin under 50.
Now, some days, my ankles are almost completely pain free and I can walk about 10 blocks. X-rays show osteo-arthritis, osteo-porosis (that from the iron I think).
I recently found a procedure that takes stem cell from your hips and puts them in your degenerated cartilage and the cartilage grows back. I need that in both ankles and am saving up for that. There are a few places in the US that do that, so there is future hope. I was offered the ankle joint replacement but declined. The stem cells sound the way to go for me. I also now take a bone formula consisting of calcium, magnesium (3 to 1 ratio) with vit D, K and zinc. That also helps.
hope you find something helpful here.
Doug
Was on a fishing trip so only back now. Thank you both Steve and Doug for the replies, much appreciated.
After a long weekend in nature, camping and doing specie angling really clears one's mind. Today it's back to reality though.
I have already notified my brothers to have themselves checked as soon as possible as both of them are over forty years old.
I really have a lot Osteoarthritis in my body. Looking back at my last two odd weeks and what has happened, I am starting to tie many of my conditions to possible iron overload.
I had a TAR (Total Ankle Replacement) 18 months ago after all the cartilage was lost in the joint. I was in a lot pain with that ankle. The prosthesis has become loose now and needs to be taken out and the ankle fused. I will never recommend a TAR to anyone. I am permanently in a Moonboot now. My other ankle is also in a very bad state, its almost where the replaced one was before the replacement, also needs to be either replaced or fused. My left shoulder is also bone-on-bone. If I dont drink anti-inflammatory medication twice a day, even the tips of my fingers becomes painful. The main reason why I went to an internal surgeon was because I get this unbelievably painful joints. Fortunately he tested my iron levels. I hope that most of the damage was focussed on my joints and not my other internal organs. I will have to wait and see. I have had these painful joints the last seven or eight years now.
I hope so meet up with a Haematologist this afternoon regarding my blood and the ferritin levels. My Internal surgeon told me to have a phlebotomy only every 8 weeks as anything more can be damaging to my health. Doing that means it will take for ages to get my ferritin back to descent levels. I was at 1771 before my first phlebotomy a week ago. According to him, 1500 and lower is acceptable and manageable. Coming from 2000+ I may have had a spike in my ferritin levels due to possible infection of the prosthesis in my ankle and hence the loosening of it. I hope it is the case and that organ damage is limited. I also have a replaced right hip and metal plates and screws in my left forearm (vehicle accident in 2007) so maybe that also has an effect on the iron levels in the body.
Something which I also struggles with is walking from time to time. I sometimes have this very heavy feeling in my legs. It feels like I have a brick or two tied to my feet.like my body is too heavy for my legs and I am not over weight. Climbing stairs also is a mission then. I have sort of tied it to a high blood pressure tablet I drink but it could also be due to the effects of iron. I have not really tried to link this condition to foods I eat though. I eat almost anything, especially red meat. I am not in the fortunate position to have Canadian Salmon at my disposalI do but at a very hefty price, although smoked salmon is one of my favourite foods. I am in South Africa and here we eat mostly beef, mutton, pork and chicken. I live in-land so not close to a fresh fish source, except Carp/Catfish in our freshwater dams, but I prefer sea fish for consumption.
The procedure using the stem cells from the hip sounds like an option, although probably very expensive and something I cannot consider at this stage. Our exchange rate is so bad it will cost me a fortune. I hope it can do the trick for you Doug.
I will keep you guys posted and once again thank you for sharing your experiences with me. I have been a soldier at war in my younger days and I was trained to adapt to any circumstance. I guess, this is just another battle that I have to fight in life. Great to have a few comrades with me, although we spread all over the world.
Regards
Leon
I noticed that we have something else in common besides HH, I am a Transition manager working on ERP application Transitions.
I was old to avoid red meats as much as possible and eat more white meats like chicken , Turkey and to eat fish.
I am not a fan of many fish although I would like to be.
I do still eat beef but not as often as before I was lucky in that I could take weekly phlebs to take my ferritin below 50, although l know that I need to have a phleb and have to arrange for one as I feel some of the issues starting up again, pains in the joints and burning in my toes and feet. My last ferritin check also showed my level as 68 so I need to reduce that.
Have to go lunch hour is up...
Take care and let us know how you are getting on we are all in this together.
Regards
Steve
We do indeed have more in common then. I am on the development and maintenance side of Oracle PeopleSoft. Not easy doing my type of work with a foggy head, that I have noticed clearly the last year or so. I am not sure what a transition manager does, but I guess it has something to do with taking legacy systems onto ERP systems. If so, then I have been there and bought that T-shirt as well. Did our transition from an IBM in-house written system to PPS. We have the HR, Financials and the Student Administration modules implemented so it's a big setup. I am at the University of the Free State in Bloemfontein.
I went to the Hematologist yesterday and she decided I need to have a phleb every two weeks now. She puts on a drip before the phleb to replace the loss of blood with fluid. I am not sure if it has good or bad consequences though. I am scheduled for the next one on 30 March. Also need to get Vit B injections once a month...ouch!!
What is hard for me is the fact that I have been working on preparing myself mentally for a pretty challenging ankle operation round about end of April and suddenly now I have to bleed every two weeks and I am really concerned about organ damage. Looking on the web the consequences of an Iron overload seems very serious. I had a damaged (bleeding) liver and spleen in 2007 after a nasty car accident. I lost my right hip (replaced and perfect now), 3rd of my colon and the bottom 30 cm of my small intestine. I obviously had a lot of anti-biotics. The arthritis started about a year after the accident.
I guess I just have to stick this one out and get that levels down. Going to take a while to get to 50 from 1771. The Hematologist is fine with me undergoing the operation though.
Regards
Leon
You have been through it, HH is the last thing that you needed.
I to at the start had a drip in one arm and gave blood via the other, I was giving every week, and did note what issues I had on this site.
I can tell when I need to have a pleb as I feel some of the old issues returning.
I am due to give now and have some pains in my fingers and toes and the brain fog is a little worse.
I am going to try and give in the next few days, but can only go on Saturdays now.
If you search my name on this site you should be able to find my mail that gives my experiences before I was de-ironed.
Take care
Regards
Steve
I am still waiting for results of Genetic Testing. I thought I would repost my previous comments for some arthritis relief. I hope some find it useful.
" I have some general info for all here. During this 4 year journey I was introduced to coffee enemas. Last fall, before the saturation levels were checked, my ferritin levels were at 623. My Naturalath brother suggested coffee enemas to detox the liver. With a slight diet change I was able to bring my ferritin down to 322 in 2 months. This was accomplished by a coffee enema once a day. Believe me when I say this was not easy to start. I mean "you want me to put what, where?
There is no other explanation for the lowering of levels so fast. Also I will be starting some boron supplementation. Most of us are boron deficient, and arthritis has been controlled and reversed in many cases with people starting to supplement with it. Look into this everyone and see if it helps.Lots of research out there on these two topics.
Be well. "
I certainly can do without HH, I agree, but I have it and I have to now cope with it too.
Had a second Pleb this morning, with the drip. Also got blessed with a VitB12 injection in the backside. It went ok, had a bit of cold sweat and lied down for while. I always had this issue with my blood pressure dropping if I had blood withdrawn. Nothing to do with seeing blood, it's just some cold sweat, dry mouth and light light headedness that creeps into the picture..some form of shock I think. After a while I was felt quite good. I will have the next one in 14 days time and possibly also have my blood tested again then.
I will have a look at your previous posts Steve, should be interesting to read. I do feel that I have a bit of brain fog also and the last two nights I had a lot of pain in my body, the joints in particular. I am staying away from any alcohol (hard for a craft beer brewer who enjoys a beer every now and then) and I am drinking lots of water etc. I am trying to differentiate between pain possibly caused by HH or by something else.
I am afraid I am used to getting my coffee into my body the more traditional way, but if I am not responding well in terms of getting my count down, I will have to look at alternatives as I feel I am at a huge risk of permanent organ damage at this high levels. I may have to give the Coffee enema a bash!.
Regards
Leon
https://www.youtube.com/watch?v=NuLG-WAIvdc
https://www.youtube.com/watch?v=lYM_nLBW0EY
Just because your ferritin is high, doesn't automatically mean you have liver damage. I was really worried, too. Just focus on the treatment, and have faith!!