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
Went for my third pleb yesterday. Was ok, had a full drip running in on the one arm and the thick old bleeding needle in the other. Had issues getting blood out and when it eventually got going quite well, the whole thing fell out. It was a pretty messy incident, blood all over everything. I eventually got hold of a piece of cotton wool and applied pressure where the needle came out. We had laugh afterwards and it was all in a good spirit. Got about 400- 450 ml out though. Funny but I always get a bit dizzy and then I start sweating "cold" sweat. I can tell exactly when I am letting blood out or not, just by the way I feel. Also painful in my vain.. possibly the suction, I am not sure. I have a nice old blue spot on my arm today.
Received my results just now and my saturation is down from 107% to 54%. All over Iron count also withing range...Ferritin..> 2000. It went up form 1773 last time while the rest came down dramatically. I am a bit confused about it but having a loose ankle prosthesis in my body could possibly be the cause of inflation resulting in elevated Ferritin levels. I guess I will not know until the ankle is fixed...which could take another 3 odd months.
I am confident that although I am 100% HH positive, I may be a lucky one in the sense that I accumulate iron rather slowly and can get it down with relative few pleb sessions. Time will tell.
Regards
Leon
I haven't been to the site in quite a while, but your story caught my eye because of the ankle, arthritic symptoms you have.
First a bit about myself. I was tagged with HH in late 1993, at age 48, pre genetic testing. The biopsy indicated HH and some degree of cirrohsis. Scary. At that time, the mortality rates for those symptoms was 70% in ten years.. Oh, shit!
My numbers ran well above the upper limit of the machine which had a ceiling of 750. After nearly 4 months of weekly phlebs, my numbers were still above. So we went to twice weekly. After a bit more than a year, the numbers came down below 50, and since then I've been on a bout a 3 month schedule.
I had the sense that even before the test, something was wrong. I was asking myself if this were male menopause I'd read about. Always tired and fatiqued. And if I walked too far, like while golfing, my legs would freeze up below the knee. I would tell anyone who wanted to listen that I felt like the Tin Man in Oz, and that I needed a steady dose of WD-40. So for many years now a high grade Omega 3 oil is part of my daily diet. I've just recently switched from a fish source to Hemp oil. Cheaper where I live with a great ratio.
Four years after being deironed the large joint arthritis started first a knee than the ankle and hip on the right side. No cartilage left in the joints, small spacing. In 2000 I had that hip replaced.
Then a year later the same started on the left side. Left hip replaced.
I'd consulted with two ortho docs about ankle replacement because weight bearing was so painful. So sharp. One was gungho to replace it, and the other told me that they were slowly fusing on their own and that eventually that would be a better outcome than the surgeries available. Thank you, doctor.
Several years later, after limping severely and having to leave my employment, and walking on custom made braces, a rheumatologist suggested that I try colchicine. Said that I had pseudo-gout, which I'd never even heard of. Wish I had. With no expectations of sucess, I decided to take yet one more medicine, and so happy I did. It took nearly a month, but I realized that when I stood up from sitting, I no longer had to stand there for a minute getting circulation going and feeling flexible enought to take a step. I mention this because pseudo gout is very common in HH and most physicians will miss it. Took 3 rheumatologists to see it in me. The doctor told me it works for some and, unfortunatelh, doesn't help others. Yay for silver linings. The medicine comes from a plant that grows in the mountains of eastern Europe and has been used since ancient Egypt and Greece for,'rheumy,' type joint pain.
So here I am at 70, still chugging along. There is much I can't do, like walk very far, but I'm getting better and healthier. 18 months post spinal fusion and still in the yard when I can be.
Don't know if this is the appropriate site for a discussion of the use of medical marijuana, but I have switched off almost all the other drugs, and take lite doses of high cbd cannabis. No more trial doses of Gaba, Lyrica, Cymbalta, etc.
Thank you for sharing your story with me. Pretty inspiring and I for one has no issue with discussing the side effects of HH, like Arthritis etc. here. It's all related to the HH problem we share.
Reading your experience with your legs, the tiredness and fatigue and comparing it to how I have been feeling that last few years, I realized that I probably suffer from more than a few symptoms of iron overload. Also have this heavy feeling in my legs, much like I am carrying a heavy extra weight with me and always wants to make me sit down everywhere.
On the bright side, I have realized this weekend that I do have less inflammation in my joints than before I started the phlebs. The "Iron fist" is feeling much better too. I told my wife this morning that I feel extremely good today, even though I am going through hell with my ankle, the painful joints are much better. It really cheers me up and gives me a lot hope for the future. Hopefully the legs will also improve soon.
Every day I realize more and more that the HH problem interweaves itself into the type of conditions that is related to 'aging' and hence overlooked by most medical practitioners or made off as ageing related conditions. Took me more than a few years to find the cause of my painful joints and I also had encounters with a spread of specialists. It really is a sad story because if I think of my dear old grandfather who went through life with distorted hands and painful joints since he was a young man. To think he probably had HH and nobody diagnosed him early enough to do something about it. He used Cannabis (or Dagga as it's called in SA) for his condition even in those days. He made a tea out of it and drank a little bit very day. It helped him a lot as far as I can remember. I have recently started to use Colchicine, which is mainly prescribed for gout here. It works very fast and relieves the pain well. It's expensive but effective. I tend to have an elevated Uric-acid level in my blood and acidic food like tomato etc. increases it. The Colcicine also help for that. Pseudo gout is a sudden swollen joint etc. but I just have painful joints all over.. sometimes more and sometimes less but never a specific inflamed or swollen joint as such. Now you can understand why I say I am feeling great today as I have less pain all over my body. I am going to monitor it and if it increases again over the next 14 days and then suddenly improves after my next phleb, then I know it must have something to do with iron depositing in my joints causing inflammation etc.
The ankle's cartilage seems to be one of the prime targets of HH and me, being there at this stage knows exactly what you are talking about. You can really count yourself lucky for having a doc who gave you the right advice. I have just this morning given the green light so that they can start with the process for my ankle recovery operation. I call it recovery because it is effectively "gone" at this stage and needs to be recovered. I will have a fused ankle on the left then and then we will have to decide on the way to go with the right one as it's also in a poor state. Definitely another replacement attempt or fusion.
Regards
Leon
Thanks for the response and sharing more of your condition. Yes, it is a strange and at times overwhelming condition. Like your Grand dad, I watched my Dad suffer through a lifetime of undiagnosed joint pain. After a while it was decided by well meaning friends, etc. that he was just a hypochondriac. If they only knew!
Like you and many others, I have good days and not so good days. I am often scratching my head and trying to figure out what I can do to dial into more good days. Thankfully even the down days are tolerable. At 70, I'm just happy to still be breathing.
I am still experimenting with cannabis, mostly vaping and green drink. I am a lightweight and am interested in pain relief much more than getting, 'lifted.' Again fortunately I live in a state that allows me to grow a few plants, and I am usually trying out high cbd strains that will do just that. And it lifts my energy/mood which is a good thing. Perhaps someday I will try some Durban Poison.
Best of luck with your ankles!
John
Haven't been on for awhile, but read your post and hearing about the arthritis really struck a cord.
Sorry to hear you have HH. Yes the fatigue & joint pain can be debilitating. Glad to hear they did replace the one ankle & have plans to replace the other. That must be a relief for you. What other joints are affected for you?
How many phlebs have you had now? I have been doing this now since 1999. I still get phlebs anywhere between 1-3 months. However I have a mediport so I no longer get poked.
It is so much easier if you hydrate before your phleb the day before and drink during your phleb. I drink diluted Gatorade, and also drink coconut water, which has lots of potassium.
Lucky you to get the VitB12 injection. Hope things continue to get a little better for you.
Some time since I have been here, went thru a bad 6 weeks. My father became sick and after three weeks in hospital passed away.. .86 years and 11 months. Quite interesting the fact that up until his death, he did not have a single painful joint in his bodyand I got 50% of the C282Y gene from him, the other C282Y gene my mother, who is 83 and also not a sore bone in her bodyamazing.
Tuistone, like you, I also have some good days and bad days. At 53 one would not expect it but some mornings when I have to get up, I wonder how for long will I be able to do it. Other days I feel ok and I go on with life. I am trying to get to grips with the idea that I have gone backwards a lot the last three odd years in terms of my joints and I now, after the HHC, I am more tuned in om my joints in particular, trying to figure out if I am still going down-hill or if things are stable. It will never improve but I want to at least stop any further degeneration.
I live in a country where the use of Cannabis is totally illegal although it will not be hard to get some Durban Poison as a big part of the population, especially the indigenous people smoke it. At this stage I am steering clear of anything that can influence bone growth. On 20 July I need to get this prosthesis out and I am going to need every little bit of bone regeneration my body is capable of. Interesting fact, if you take one draw on a cigarette, it puts your bone growth back 17 days. That is what my orthopaedic surgeon told me. I obviously dont smoke at allhad my times when I was way youngernever Cannabis though.
I have lost out on one two-weekly Phleb session but when I went again two weeks ago, I really got rid of probably around 750 ml.. first bag filled about a quarter and then stopped so they took second one....another hole in my arm but then they struck gold.. was worried that the bag will burst!. Just came back now from this weeks session. I have had 5 sessions in total so far, got rid of another very full bag in 8 minutes. It took more than an hour for the drip to go in but once again the bag filled up very fast. I do get a little dizzy but it goes away after a while. Being hydrated during the Phleb really helps a lot and I agree with MissSophie, get liquid in your body before and during. I also feel better after a session and I do have less joint pains the last few weeks, although I still use ant-inflammatory pills twice a day. I have not tested my blood lately so technically I am still ferritin over 2000. I will have the test done before the operation in July. Still hoping the cause is the loose prosthesis. If not, then I guess I am in trouble and will have to stay on this treatment for very long, not the most appealing idea at this stage though.
I am also thinking of following a low iron diet. Dcgoforth, looking at your comment regarding the diet and less meat, more fruit etc., it sounds pretty tempting to lose a bit of weight. I am not overweightmaybe about 5 kgs and I can do with a few kilos less, especially when on crouches later this year. I am preparing for this whole ankle thing now, making the house more accessible for a wheelchair, putting back the old monkey chain above my bed, railings in the bathroom etc. Still no idea how I am going to do the Phleb's during the initial 6 weeks.
HeatPete, glad to make your acquaintance!. I have had some of your symptoms in the past though I cannot contribute them directly to the HH, except for one. Sometimes I still wake up at night and then I cant fall asleep again. Never had that issue in the past so I can safely say its because of the iron overload. Acid has always been a problem and I have had a throat that got burned due to the reflux, especially when I sleep it pushes back. No congestion though and we eat stress and depression for breakfast here in Africa.
Keep well and I will be back.
I read your post. Sorry to hear you have HH. Stay on your doctors. Everyone I have spoken too says the same thing. Get the iron out of your body. During my phlebotomies I fill the bag very fast as well. I had a scary episode during my last one though. At about 400ml I started to feel light headed. I ask the nurse to stop and at that point my pressure dropped to 60/48. I felt the nurses rushing around me giving me a iv saline. Within a few minutes my pressure was working its way back up to normal. Not to sure what happened. Have read it could have been the way the nurse inserted the needle. He had problems and took him about a minute. Moving it around a lot, in and out trying to get flow I guess. It may have been SYNCOPE . A bubble appeared near the vein during pleb I think. I heard the nurses talking. They had had to go in the other arm for the IV drip. I have went over what I ate and everything was the same. I drank a litre of water 45min before. Ate a good breakfast. ?????
You may want to look into boron supplementation. Most people are born deficient. I have been taking a boron supplement I make myself for over a month now and I feel much better. I have had to 2 knee surgery and stiff joints for several years now. Although some of the relief is from the de-ironing process, the knee pain is going away and osteoarthritis I have been experiencing is calming down. Have a read in the links below to get you started and to see if it may be for you. There are many articles and research. Read as much as can on the subject. Its a bit of a hot bed topic. Read from as many reputable sources before deciding. I hope it helps. Be well.
http://www.earthclinic.com/remedies/borax.html
http://www.regenexx.com/supplement-to-help-stem-cells/
http://educate-yourself.org/cn/boraxconspiracy03jul12.shtml