Hemochromatosis: Support and Discussion

So, it has been about six weeks since my wife was diagnosed with hereditary hemochromatosis and I have lost track of the number people I have told about this truly insidious condition. I have told my family, my friends, and anyone who reads this blog. It really is a sick bastard of a condition and more people need to know about it.

One of the burdens of finding out you have hereditary hemochromatosis is the need to tell all your "blood" relatives. Chey did that and got some telling responses. She found out that her mother's brother, long out of touch, has been in really bad shape for some years now, with a. heart disease that has required extensive hospitalization and has doctors baffled, b. serious liver problems despite the fact that he is not a drinker.

Bingo! Both of those sound like the kind of organ damage that hemochromatosis does. And his sister, Chey's aunt, died of liver cancer at a very early age. Clearly, the need to run routine tests for hereditary hemochromatosis as a standard part of preventative health care is emerging as a theme in this new world of unwellness we are exploring.

Another theme is complexity. The treatment for hereditary hemochromatosis sounds simple: frequent phlebotomy. But the reality is a little different. First of all, a diagnosis of hereditary hemochromatosis is typically followed by a whole bunch of doctor visits and tests to determine what damage the condition has inflicted so far. As mentioned in my previous post on this, women naturally mitigate or the effects of the condition, to some degree at least, from puberty through menopause. This does not mean their organs are not being damaged.

When Chey had arthroscopic surgery on her shoulders years ago the surgeon mentioned seeing crystals. Dude, those were probably iron crystals, and if a patient has those then there is a good chance she has hemochromatosis; point that out to the patient and she can start dealing with it.

But no, this guy did shoulders--did them very well-but that was all he did (in fact, I went to see the same guy for soreness of the shoulder that turned out to be caused by a herniated disc, which he didn't diagnose because--you guessed it--he's a shoulder guy).

That was just one of the many times over the years that a greater physician awareness of hemochromatosis (and greater levels of patient awareness on the part of physicians) could have resulted in less damage to Chey's organs.

We are now awaiting the results of tests, pituitary, adrenal, thyroid, liver, etc. We think the heart is okay because she did well on a stress test earlier this year. Lungs seem good too, something we know from a very thorough testing at the quit smoking clinic last January.

In the meantime, Chey continues to experience extreme fatigue, bad headaches, and severe stomach pains; not all day, not every day, but most of the time on most days. With a lot of time to think while waiting out the pain, she is beginning to see the past in a new light, the last ten years of it anyway. She realizes that she was much sicker much sooner than she admitted to herself at the time. She was understandably loathe to accept that, somewhere around 2004, she had become technically disabled, i.e. she could not have held down a 9 to 5 job for 5 days a week.

There's still plenty of room to hope for a return to a more normal existence. We draw inspiration from "The Man Who Turned Orange" in Season 3 of Mystery Diagnosis on Discovery (Episode 2). Here was a marathon runner who described a rapid decline to the point of feeling, and walking, like he was 80. Depressed and suicidal, he was brought to his knees, literally, by what turned out to be hemochromatosis. With treatment he finally got back to the point where he could run a marathon again. Chey has never been the marathon type, but if she got to the point where she could walk the dog every day, that would be wonderful (and the dog would be really happy too).

Anyway, the whole point of this post was to help people with hemochromatosis get in touch with other sufferers. So, here are three resources we have found. There is an old fashioned mailing here and a somewhat more accessible forum here. It really does help to talk with others who have the condition. And we don't think you have to be Canadian to join this forum. If you know of others, please comment on this post and let folks know. Thanks.


  1. Hi, Just read your blog,my first one on this subject,but not because of a recent diagnosis. My husband was diagnosed 4 yrs ago,goes to the NIH for blood draws every 2 monthes. Always is tired & cranky but has had Hives for the last 8 yrs & I am curious, is it possible that the hemechromotosis is causing the hives?! Thanks for your time, Susan

  2. Susan -- First let me extend sympathy to your husband and you, this condition can be rough on both the patient and the partner. As to the hives, I have zero medical training so really would not want to comment. I did look up hives in The Iron Disorders Institute Guide to Hemochromatosis (you can search inside the book on Amazon, here's a link http://is.gd/eM7U). There is one mention but not as a symptom of the condition. I can recommend this book not just for the medical info but because of all the case studies it relates--reading about other people dealing with the condition really helps one cope. Good luck!

  3. Hi Susan,

    I read your post in regards to your husband having hives for 8 years as well as HH. I landed here reading your post by googling "Hives and Hemochromatosis".When I was in my 20's I had a 10 year nightmare with Chronic Urticaria (major hives) and no one could tell me why or what it was from. I am now in my 40's and am in the process of getting the genetic tests done for HH as I am harboring some of the symptoms and have elevated Ferritin. This really is important info to find for me and may possibly answer a lot of questions. If it is of any comfort to your husband my hives suddenly left 10 years later as quick as they came on. I hope all is well and please post any new info, I will as well. Thanks:-)

  4. Oh and great blog Stephen:-) Thanks!

  5. I have hh found out 6 yrs ago and yes I get really bad hives and have all my life my brother,and my daughter and son and granddaughter also, When I have break outs i get my cbc done and all counts are very high...my blood gets all out of wack... They drain me and in a couple months I'm fine for a while until it starts again .I've had all organs byopsied and all was a little high but ok.Iron level ok now but underlying problems still prevail.My daughter has joint pain ,migrains,and thyroid problem but not high iron she went for dna test today we will see ..fatigue and hives and nerve damage in arms are my problems but no joint pain . So far from what I read this affects people in different ways.I have have been researching for 6 yrs.Kathy

  6. My father has sufferd for quite somme time now with chronic idiopathic urdicaria. He has also been diagnosed Hemachromatosis. He breaks out in major hives at least 4 times a week. Its getting to the point where he is un able to work. I was wondering if anyone else has had the same problem. There has to be a link between the two. If anyone has any information PLEASE let me know.

    Thanks, Allison

  7. I wanted 2 know if any one knew of a top dr who treated hemschromatosis with emphasis on nutrional therapy in the boston conneticuit area. Just diagnosed. Have read many controversies regarding the use of vitamin c. All info would be greatly appreciated

  8. I moved to a new apartment 4 months ago. I broke out in hives 5 weeks ago..still have them...when I sleep....I can sleep 15 hrs straight...more if a noise doesn't wake me. When awake....not tired....but can get sleepy fast if I'm say watching tv. And when I sleep...again it is not a nap....regardless if I woke up 5 hours ago. Sometimes I'm wide awake like normal but when its bedtime...I can sleep a whole day I feel. I noticed a red tint caused from the faucets in the apt. Saw it was more than likely high levels of iron ...which can lead to hemachromatosis....which I need to get checked for..ssymptoms included fatigue impotence ...which I got with these Damn hives...didn't hear anything about hives however until I found this blog...if that is what u guys are saying is hh. Or is can I just have an overdose of iron and this is the result...and not have hereditary hemochromotosis? I am Colombian. No one in my family has ever had hives.. which I het randomly..daily....which started on my head..then face and head...but now its all my body even the palm of my hands...but not so much my scalp anymore...help...any info is greatly appreciated.

  9. I'm 18 years old. I've gone to about four different docs. One even told me to take iron supplements. After a year or so of feeling like crap all the time...my blood work was sent off to a lab this time and the lab people caught it. They said I have iron overload...which made so sense because I was vegetarian for nearly four years. I'm scheduled now to go to a hematologist. I just want to feel better again. I have been having chronic brain fog, headaches, muscle twitching ESP around my mouth, severe insomnia, weak pulse, severe anxiety even when I have nothing really to worry about, fatigue, hand trembling, etc etc. I'm so sick of this...but its nice to know I'm not alone. It just seems so strange that all this would happen when I am so young.

  10. I really need someone to talk to

  11. I had routine blood work and it showed elevated liver . Then I had DNA
    Testing and was told that I have hemochromatosis .. I'm 44 - my dad was diagnosed
    5 yr ago & his sister also. My dad had one of his kidneys. That shriveled up like a raisin
    And is in stage 4 kidney failure with good kidney. I have my first real appointment
    This week. And was told that I will have to see a liver specialist next . Does anyone
    Know a dr in Houston ? Thanks Kim

  12. had a routine blood test done in June 2014. My iron came back 192. That very much concerned me because previous blood tests done a few years earlier had never shown abnormal iron levels. Now, I do not eat beef, liver or anything else high in iron. Nor do I cook on cast-iron skillets. I can only think it's genetic. The nurse practitioner suggested I go to a physician. Being a person schooled in natural remedies, I decided to see if I could reduce my iron naturally. I put myself on a protocol and within 2 months, by iron level went down to 110. Here's what I did: Two homeopathics-one called "Iron Mix" from Deseret Biologics, the other one, Ferrum metallicum, from Newton Homeopathics, two dropper fulls a day. I gave blood once. I did two scoops of organic of powdered wheat grass purchased from Whole Foods. I also too calcium and magnesium supplements (don't use calcium carbonate). It worked for me. Hope this helps.

  13. Sorry we did not see this sooner. Hope things have improved for you. You might want to ask your question on the Facebook Hemochromatosis page. Also, there is a list of doctors whom others have recommended here.

  14. Hello Stephen and Chey.

    So sorry to hear about the diagnosis. I was diagnosed in 1996 at the age of 46. I too have had things happen throughout my life that actually saved my life like a bleeding ulcer. Child birth is another episode that helped in saving my life. Anything that makes you bleed is helpful.

    There is a wonderful book out about hemochromatosis. It's called The Iron Elephant by Roberta Crawford. It sure made things clearer for me to understand. Mrs Crawfords husband was a heart surgeon and died of complications brought on by the disease. Mrs Crawford was the director of the Hemochromatosis Foundation in Florida. Her book has all the information about the foundation. I even had the opportunity to speak to Mrs Crawford on the phone. The most important thing she told me was to never stop doing phlebotomy. When first diagnosed I had to do phlebotomies once a week for 6 months,then once a month for 6 months. Then as per what Mrs Crawford said, the doctor said I was done and never had to do one again. First I found a new doctor than I've tried to do a phlebotomy every quarter.

    I can tell its past phlebotomy time because my liver gets sore, headaches, and the joints in my hands and feet swell. I also have rhumatoid arthritis, but the stuff in my hands and feet are said to be caused or brought on by the hemochromatosis.

    This can also mean that Chey probably has food allergies too. You are corrected when you say this is a bastard disease as very few doctors know much about the disease. One in five people have the bloody disease but yet it's on the list of rare disorders.

    If I can be of any help with questions, the drugs, whatever. I would love to help. Good luck in this journey.

  15. I just read your post about hives and HH. I was diagnosed in early April with HH. I have also struggled with itchy skin for at least 10 years, off and on, but getting worse over the last 2 years. After my first phlebotomy the itching totally went away. 2 months later the itch came back along with hives. I had my second phlebotomy done this past week but these hives have not gone away despite a steroid shot. Could HH not only cause itchy skin, but progress to hives as well?

  16. Hello. I was diagnosed with HH in March, 2019. Actually, I diagnosed myself after reading my 23 & Me results and requesting the test from my PCP. I had been seeing an arthritis "specialist" for 3+ years for joint pain in my right forefinger (https://www.hemochromatosis.org/welcome-2#symptoms) who tried everything he could think of and then just gave up, opting to just try to manage the pain. He even sent me for an MRI ($800 out of pocket). It took me less than five minutes to find the information linked above.

    The need for making physicians more aware of this condition cannot be understated. Also not to be understated is the need for much easier access to the necessary treatment. I have to undergo weekly phlebotomy. The prescribing physician, my hematologist, had me come to his clinic for these procedures at first. That worked well until I got the first bill. $146/draining. That's ~$600+/month. Unacceptable. When I brought this to his attention, he suggested I start going to the local blood center who does it for free. I suppose he felt he had squeezed all he was going to out of me. Although the red tape I encounter with each visit to the blood center borders on the unbearable, I am still able to be phelobotomized as prescribed. Then I went on vacation.

    I twice attempted to schedule a therapeutic donation only to be whipped back like a circus lion by even more red tape. I also attempted to "sneak" into a mobile blood drive in a neighboring town but my hemoglobin level was 12.9) Why is something so simple and so necessary so difficult? As a result, I will miss my treatment for this week. I guess my liver can take yet another one for the team. I left a message for my hematologist's assistant (no one EVER answers the @$#!% phone there) in hopes of getting in before I leave but I am less than hopeful.

    Do any of you know of any fast tracks or hacks in the system that I and others can exploit to receive the necessary treatment for this condition without having doors shut in our faces? This is downright maddening. Oh, did I mention it's necessary?

    Thank you for reading and thanks in advance for any advice.