Dealing with The Damage Done: A recurring theme in hemochromatosis victims

by Stephen Cobb on October 5, 2010

dealing with damage doneI want to talk about an aspect of hemochromatosis that I refer to as “The Damage Done.” When I read the comments on this blog and on the Hemochromatosis page on Facebook, they bring home to me the fact that there is a whole other side to hemochromatosis awareness. You might even call it the dark side.

[But before going any further I want to take a moment to thank everyone for their participation on the site here, and over on Facebook, as well as on Twitter. When you talk about any kind of awareness raising these days, those online numbers count. The more people who follow @CelticCurse on Twitter and who like the Hemochromatosis page on Facebook, the more we stand a chance of exerting pressure on doctors and researchers. And the better we are able to get out the word to the millions of Americans who are at risk but have not yet heard of this most common of deadly genetic conditions.]

The Damage Done is a term I use to describe the delayed effects of hereditary hemochromatosis (HHC). These can be devastating, not just for the victim, but for entire families…

 Yet when you look at the literature about this condition, research concerning the damage it causes seems very limited, possibly because of this widespread–but erroneous–notion that the condition can be “treated” through phlebotomy. Sadly, this does not treat all the damage that has been done to the body by exposure to excess iron.

I had occasion to discuss this recently with a woman who had just lost her husband to HHC. She was wondering if her son should get tested for the condition. The following is an expanded version of what I wrote to her.

Sadly, too many doctors think HHC is as simple as ABC:

A. We found the condition (pat on back)
B. We prescribed phlebotomies to control iron levels (did the right thing, another pat)
C. Patient treated, end of story (nothing more to worry about)

In fact, there is a big triple D here: Dealing with The Damage Done. Excess iron can damage many organs, from the liver and lungs and heart, to the brain and the endocrine system, not to mention the joints. Knowing how much damage was done before iron levels were brought under control is very difficult. As far as I can tell, doctors who know how to treat a person with iron damage are few and far between.

My wife is an example of what iron damage can do to someone. I share her story to illustrate this point. Her life has literally been ruined by hemochromatosis. At 47 she was a vibrant individual, a world traveler, a skilled and respected professional in her field with a six figure job and hobbies like ocean sailing and off-road racing. Ten years later she walks with a cane, can’t work, can’t travel, and has a hard time climbing a short flight of stairs.

And guess what, her doctors don’t seem overly bothered by this. Why? In some ways their attitude is a mystery to us, but I think it stems from the fact that they found the hemochromatosis and they ordered some phlebotomies. They test her iron levels from time to time and draw blood if necessary to keep the iron levels low. Beyond this they show little interest in the fact that she still suffers from a range of problems like constant joint pain and abdominal pain and head pain, plus a crazy heart rate, drastic digestive problems, and epic sweating. (Not surprisingly, she is also quite depressed.)

Their reaction to these symptoms, all of which can be attributed, quite reasonably, to iron damage? They keep recommending that she see a therapist (one step away from saying “it’s all in your head my dear”). At the same time, they limit her access to pain medication, thereby ensuring that she spends at least half of each month living with pain but without pain meds. And she is not alone in this. Time and again, here and on Facebook, and in a variety of support forums, we read similar stories.

All of which points, first of all, to the need for early testing. My personal recommendation to anyone who has lost a relative to HHC is to get tested right away. Not just the ferritin and iron saturation tests, but the genetic test. Indeed, anyone with any family history suggestive of hemochromatosis would be wise, in my opinion, to have the genetic test (I have put some links for more about this at the end of the article).

Now, I know some people are wary of genetic tests. Until the recent changes to healthcare law there was a very valid fear that a positive genetic test for HHC would lead to a person becoming “uninsurable.” There is also a need to check, before you go through with a genetic test, that the entity doing the testing does not claim any ownership in the sample, or the results.  However, on balance I am in favor of genetic testing, mainly because they expand your knowledge of the realities you face (and which your family members may need to face). For example, if your son has the genetic test he will find out either A or B:

  • A. he has nothing to worry about, which would be great.
  • B. he is at risk of iron overload, in which case he gets a head start on prevention.

If B is the case, he can:

  1. start to watch his diet
  2. inform his doctor so that s/he can factor that into his healthcare
  3. make sure he gets his iron levels checked regularly (it is a simple set of inexpensive blood tests that can be part of an annual physical)

The problem with not testing, and not treating, and not taking preventive measures can be seen in this comment posted on Facebook:

“I have been fighting hemochromatosis since 2003 when finally I figured out what the doctors couldn’t. Hemochromatosis and I have become best friends so to speak. How do you get the doctors to listen to you and help. I have found they do not understand the disease and what happens with the process of the disease and I fear will lose more organs (I have already have lost 2 and I am only 44 yrs old). I also fear I not be around to see my grand kids grow up because the doctors will not do their homework and learn.”

I think it makes a lot of sense to learn whatever you can about this condition and, if suspect you might be at risk, get tested. You can read more about blood tests and DNA tests for hemochromatosis here:

Finally, as a footnote added after this post first appeared, I have to say I have learned a heck of a lot of stuff about HH in the last 24 hours by attending the Iron Conference put on by the Iron Disorders Institute. The IDI is a not only a great source of medically reviewed information about this condition, it has led many of the initiatives in the awareness and treatment of this. I strongly encourage you to head over to their website at www.irondisorders.org and read everything they have, then buy all their books. They are worth it!

{ 8 comments… read them below or add one }

Chey Cobb October 9, 2010 at 6:50 pm

You can have the genetic testing done independently and without your doctor’s approval. That way a positive result is not in your medical records (until/unless you tell your doctor). However, the new medical laws say that insurance companies cannot refuse you for pre-existing conditions. (But I haven’t seen anything that says they can’t charge you an arm and a leg for such a condition.) A real Catch 22.

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Debbie May 13, 2011 at 2:43 am

l have the H63d homozygous but l believe l have hemachromotosis l also had a parasite called giradia treated not diagnosed lost 2 stone. Struggling to keep weight on fighting different types of dirreah. Candida was found in stool sample feel for your wife and so glad you shared l feel my life has been shattered. Fighting with natural medicines but juggling so tired of digestive problems and restricted in what l can eat.
Thank you

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Susan August 12, 2011 at 8:44 pm

I have been just diagnosed with homozygous H63D. I am holding some iron with fluctuations in HGB and HCT. I just wanted you to know that also I have fructose malabsorption with periodic SIBO that is treated with XIFAXAN. I have been told i have esophagitis. I also have strange left sided pain. Do you think there is some relationship?

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Karen October 19, 2011 at 11:01 am

Whoever you are, thank you. My situation has mirrored this complete statement that you made about your wife. I was recently refused treatment at a cancer center.

I explained in great detail the damage that had been done to my veins from previous procedures to my doctor, who, in turn sent his nurse in. She looked at my arms for all of 2 seconds and said “Oh yeah, we can get a vein”, and then walked out. While in tears from panic, I let the (different) nurse look for a vein. Within 30 minutes, she made three attempts to access a vein, the whole time stating “It won’t thread, it won’t thread”.

I did make her stop and told her that if she had communicated with my doctor, she would have known that there was damage to my veins. She got mad at me and the doctor told me I would have to go to the Red Cross.

So now, I have no where to go. I wish we could all go on a talk show somewhere and tell our stories. I would be the first in line.

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Damon May 9, 2013 at 9:00 pm

Treatments can often be done at a local blood bank for free. I go to United Blood Services at no cost. My doctor sent me to the hospital where they wanted to charge me $164 for it, so this was a nice find. I had to fight for it though.

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David July 26, 2013 at 1:23 pm

Can anyone recommend a clinic that specializes in the damage done. I have been bled down for over a year and still suffer from headaches, joint pain and fatigue.
All my doctors don’t seem to know very much. It took 3 years to finally get a diagnosis. Appreciate any help.

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erica July 31, 2013 at 11:07 pm

you should talk to dr. andrew hall cutler who wrote the book Amalgam Illness about recovering from mercury poisoning…he uses a method called frequent low-dose chelation that is safe and effective. he’s pretty much the authority on heavy metal poisoning. i’m going to be doing frequent low-dose chelation for iron using minocycline. he has a yahoo group.

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Andy Green Mann February 21, 2017 at 5:24 am

I have a HHC – H63D Information page which can be found at;
(Facebook) @H63DGeneMutation
Lots of good information if you have this gene. Also a good group is;
(Facebook) Haemochromatosis Blood Buddies International

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