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.
Good afternoon. I am a caucasion male age 55.
I've been complaining about various aches and pain for years with little relief. Everything started to change in about 2009 when many of my symptoms became worse and I added a few more. My hands started itching quite a bit during our sunless winter in Oregon where we moved to the previous year. It wasn't until the sun came out in spring when I realized the itching turned to Vitiligo. I was also experiencing vertigo, Planters fasciitis and extreme joint pain, so much so that it made it hard to work. Extreme fatigue became worse, to the point I asked to have my Testosterone checked, it came back extremely low. I was put on Testosterone suplements which seemed to help but unfortunately they caused my Hematocrite levels to elevate to dangerous levels so I was taken off.
I eventually resigned myself to old age and struggle through each day. In about 2014 my headaches became more debilitating and I was popping over the counter meds like candy. My energy levels were at an all time low and joint pain was as bad as ever. In early spring of 2015 I began to experience chest pain (again) and numbness in my arms and fingers. The chest pain worsened to the point that I went to emergency and spent the night on my birthday. After 16 hours and $14,000 in hospital bills I was sent home with a diagnosis of unstable angina and instructions to see my doctor. Because of a mix-up with my insurance I was left with a bill of over $11,000 of the $14,000 and being assinged to an out of network doctor for follow-up. I quit smoking that day and have not had a single drag since.
Aparently the bloodwork at the hospital showed elevated liver enzyme levels. Due to the horrible insurance I had I remember thinking if I'm going to die, at least I don't want to leave my wife with a mountain of debt. I went to a few doctors appointments with seemingly no progress so stopped going. A short while later I was fired from my job and lost my crappy insurance, thankfully this was a blessing as I was then put on my wifes plan. I told my new doctor about my experiences, (he was actually my doctor between 2009 and 2013 and again from 2015 until his retirement in 2016). He sent me in for some follow-up bloodwork which still indicated elevated liver enzymes and also for a treadmill test and echocardigram. I passed treadmill test with pretty much flying colors and nothing abnormal about my heart and was told we would check my liver function again in the near future. I was also checked for hepatitis and AIDS which all came back negative. Shortly after he retired and I was placed with a colleague at the same group.
While seeing my new doctor in 2016 I mentioned my liver tests and he ordered bloodwork and ultrasound of my liver. I was told my liver was enlarged and had Fatty Tissue and that I needed to lose weight. I was also sent to a liver specialist. The liver specialist noted that I was a pretty big guy so said my liver was not enlarged based on my size. She also ordered some additional bloodwork, notably the Iron levels. The ferritin test came back at 1800 and I went back for a genetic test to look for HH. The genetics testing came back and showed I'm a carrier but nothing else. I called the medical team asking about it and got mixed messages about whether I had HH or not. At this point I didn't even know the true scope of what HH was, just that it allowed excessive iron to build up. I asked about my liver and was reminded that I had Fatty Tissue and told to lose weight. Nothing was ever said about the danger of the iron, or a need to follow-up.
About the same time I spoke with my mother and she told me that it sounded like something my brother was experiencing. I did soome research (a little at the time) and found out a little about the disorder but when I called my doctor and was told to lose weight I didn't pursue it any more.
About this time I started to experience more pronounced depression and had a lot of joint pain, both affected my work performance on a daily basis. I silently suffered for the next 2 years, was put on anti-depressants and was given psychology therapy for the depression and anxiety I had.
Fast forward to 2 weeks ago. I sent my doctor an email asking for further clarification on my tests and what the HH tests really meant. He ordered some additional tests, ferritin level was now at 2550, I knew this was high but had no idea how high it actually was or what it meant. He also scheduled a follow up telephone appointment with the liver specialist I saw 2 years ago.
I had my appoinment yesterday. She (the liver specialist) called me and when she got on the phone she asked how they lost me in the system. I explained about my contacts with my medical team and moved on. She explained the genetic tests and how it applied to me. Apparently I am heterozygous which means that it's not a given but puts me at higher risk. I told her that my brother had the same experiences. She was reccomending a liver byopsy and would give me a few days to consider the risks. I told her if it's what she reccomends it then I have already made a decision, go ahead and order it.
I got home a bit later and did more research and found out just how terrible the disease is and the damage it causes. My jaw dropped when I read the symptoms and realized I have every one of them. Joint pain, check. Depression, check. Liver, Kidney, Chest and other organ pain, check. Low testosterone, check. the list was pretty complete.
I wondered how they could not see this back in 2009 considering my symptoms. I wondered how they could allow me to slip through the system for 2 years without advising me to have treatment. I wondered how long it would have been before I died if I had not requested to have this followed up on.
I wondered about how much my life was shortend by failing to recieve treatment the past 2 years (or more). I also thought about the pain and suffering and damage to my relationships at home and work. I also felt relief that perhaps now I would find some relief from the symptoms I've suffered with for years.
I've wandered looking for a path to recovery for years. I feel as if I was just handed a map towards the exit from hell and am hoping I survive the journey out.
Has anyone ever heard of ferritin levels that high?
How high were your levels?
How often were your blood draws?
How long was it before you started to feel relief?
Do you know how much damage was likely to have occurred over the past couple years with levels in this range? (1800-2500).
Last question for now, are there any other support groups you know of?
Thank you in advance.
As for your questions, I am nowhere near as bad as you, I have just one of the two genes that cause hemochromatosis. So, I have a mild form. Those with both genes issues (I don't remember the exact terms) have a really hard time getting their ferritin levels back down to (normal (less than a 100). My ferritin level peaked at 1,000 but averaged around 600 before I was finally referred to a blood doctor that immediately had me start blood donations. It only took three donations in about 2 1/2 weeks to get my ferritin level down to 200, which that particular lab considered normal. No way, my blood doctor wanted mine down to around 50. So, I had a total of 8 donations in about two months and my ferritin level dropped to 13. However, this mass blood loss made my actual iron level go too low so I was technically anemic at that point. My doctor put my blood draining on hold for three months to see how I recovered/changed. Well, my three months are up next week and I just had a blood draw yesterday to see what my new results will be. I see the doctor next Friday to see what the new plan will be. I am hoping to have to give blood a couple times a year to keep the ferritin in check. We will see.... BTW - - I never really had any symptoms directly related to hemochromatosis, but I do have slightly elevated liver enzymes, which is why I finally found a doctor that checked what should have been checked for years earlier.
I do not know how high of ferritin is considered really high, but I know anything over 1,000 is considered critical. I did have an abdominal MRI to check my liver, which turned out good. I would not jump into a biopsy until you at least have an MRI. Liver biopsies are not uncommon, but not without risks.
My guess, and that is all that it is, is that you are going to be in for a lot of trips to your local blood bank assuming they take high ferritin patients. Most do now that the FDA cleared up the rules regarding this type of donation, but not all do, Then I think that your doctor will have to do the blood draws or other places????
You will likely have so many donations that you will become anemic, Odd that your blood is lacking iron, but you have it stored away all over your body. You will have no choice but to keep draining the swamp until your ferritin is back down to normal. And you will have to keep giving blood at a high rate probably for the rest of your life IMO. (I am no doctor with very limited knowledge on this subject; just passing on what I have read or learned the hard way).
Since I had no symptoms that pointed directly to hemochromatosis, I cannot say that draining the ferritin made me feel any different. Others in this Board have had quick results at least when it came to feeling better.
I cannot speculate on any possible damage that you may have. Way over my head. The liver is target #1, but so is about every other organ in your body including your heart.
As for other support groups, I do not know of any but never really looked. Below are links to several sites that may be of help. I am not endorsing any of them, just sites I found months ago when I found out about Hemochromatosis.
http://www.americanhs.org/index.htm
http://www.irondisorders.org/
https://hemochromatosishelp.com/
https://www.hemochromatosis.org/#overview
Good luck!
I finished the intensive draw down phlebo's in Jan, 2019, and will be going back for my first maintenance visit, after a 3 month break, this week (April 2, 2019).
My draw down intensives began in September every 2 wks, and went through January (9 total). I was around 850 when i started, and ended around 45. I felt better and better, like it was a natural high every phlebo. I had more energy through Oct, Nov, Dec and Jan, than i have had in decades. I got more done with projects and chores in 3 months, than i had in 15 years. My skin was the first to improve, no more itching, and they began healing from over scratching. Then the joint pain disappeared, then the energy boost, then the heart palps went away, then shortness of breath no more, ... no more finger tightness, ... no more brain fog - i could actually actively participate in long conversations without my mind wandering, and my emotions dancing. Overall, completely different person with declined ferritin levels. And wanted to be around people, and smiled when around family. Incredible.
Anyway, my visit to doctor this coming week cannot come quick enough; as I've noticed energy levels waned in March, and my joint pain creeping back, and my drive to do things quickly returning to the same familiar character. I do not want to go so long b/een offloading next time; and or will seek to reduce iron intake since the effects are obvious now more than ever.
I just end with my appreciation for your story. It shouldn't be like that; it's sad, really, that screening isn't implemented earlier in life for such a common check the box inquiry. I can't imagine all the pain and suffering you've been through, but looking at my life; and trying to figure out the person i have been trying to understand for (almost) 5 decades, is based on iron levels causing havoc in my bloodstream and my mental and physical capacity, really is all difficult to come to grips with.
Wishing you the best, and will update when i get phlebo this week, how that energy roars back; and what the doctor indicates will be our modified maintenance intervals (not waiting more than 2 months - if the doc agrees).