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By October 27, 2011 - 7:49am
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I am 56 and have had hemochromatosis for 3 yrs now and do monthly phlebotomies with my hemoglobin usually about 40-47 dr wants it at 30. I have cut back and watch what I eat and it doesn't stay down, I am tiered all the time , don't sleep well with out aid. Facial breakouts around hair line- Don't have any ambition to do anything- in my mind I do alot but to physically do it -it is hard to make myself. I want to feel better-alos thinning hair told alapecia about the same time as the HH. What should I do or see a dr about

Thank you
Fran Maxwell

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HERWriter Guide

Hi MissFran

Thanks for your question!

Hemochromatosis (as you know, but for the benefit of other readers) is a condition where the body produces too much iron.

MissFran, do you have primary or secondary hemochromatosis? This is important because the first kind is hereditary and the second is usually caused by other conditions like a diet far too high in iron (a special diet can then be used as treatment) or a liver condition. Since you have had this since you were 51, I will assume you have the secondary kind (please correct me if I am wrong).

You have some known risk factors
■Family members with hemochromatosis
■Men: onset between 30-50 years old (hemochromatosis affects men five times more frequently than women)
■Women: 50 years old or older (postmenopausal)
■Western or Northern European ancestry
■Alcoholism (which can lead to liver disease and secondary hemochromatosis)

Your risk factors are being female and over 50 - I am unaware of your race, family history or lifestyle.

With regard to you wanting to do things with your life but not being able to, physically, is pretty typical. The mind is willing but the body is not able. Fatigue, joint pain and a lack of energy is very common so please don't think you are unmotivated simply...because. You likely have some tough symptoms from this condition.

Here are some other treatments besides diet modifications:

Treatment is simple, inexpensive, and safe.

Blood Removal

The first step is to rid the body of excess iron. The process is called phlebotomy. This means removing blood. The schedule will depend on how severe the iron overload is. A pint of blood will be taken once or twice a week for several months to a year. It may last longer. Once iron levels return to normal, maintenance therapy is given. A pint of blood is given every 2 to 4 months for life. Some people may need it more often. Female patients may need to increase their schedule after menopause.

Lifestyle Changes

These include steps to reduce the amount of iron you consume and/or absorb, and to help protect your liver:
■Do not eat red meat or raw shellfish.
■Do not take vitamin C supplements.
■Do not take iron supplements.
■Avoid alcohol.

Treating Associated Medical Conditions

You may need to be treated for other conditions that have developed. Hemochromatosis can cause these to develop:
■Liver cirrhosis
■Heart failure

You can read a lot more on our very informative Hemochromatosis page here: http://www.empowher.com/media/reference/hemochromatosis

MissFran, I hope this information helps you and please stay in touch with us!

October 27, 2011 - 9:47am
(reply to Susan Cody)

I have primary hemochromatosis- I was diagnosised when I was 52 after I had a car accident and a dr did blood work and said my liver enzymes were high and a yr of blood work and liver biopsy the conclusion is I have HH. Don't know if my sis and brother had it because they both have passed on from colon-liver cancer. I am a white, German/ Austrian decent female- a non drinker, non smoker. I have swelling of the feet by days end and they are painful by then. I do monthly phlebotomies and have for 3 yrs now and my levels go up and down. Thank you for you time and advice I look forward to your reply

October 27, 2011 - 4:43pm
HERWriter Guide (reply to MissFran)

Hi again, MissFran

Thanks for the update.

Your European/German descent is one of risk factors mentioned.

You haven't mentioned what treatments you are currently taking. Are you taking any on the list I mentioned? If so, which ones?


October 31, 2011 - 12:47pm
EmpowHER Guest
Anonymous (reply to Susan Cody)

I do monthly blood donations. Watching what I eat etc.


October 31, 2011 - 1:17pm
HERWriter Guide (reply to Anonymous)

Hi Fran

I meant to say before that I'm very sorry for the loss of both your siblings. That must be very hard on you.

I think you should ask your doctor about working alongside a naturopath. Work on diet, nutrition, exercise and emotional health with a naturopath, to compliment what you are doing in a "medical" sense. What do you think?

November 2, 2011 - 12:45pm
EmpowHER Guest
Anonymous (reply to Susan Cody)

Hello Susan,
I became aware of your response through a Google Alert on hemochromatosis. I am very pleased with your response and the basis of the information you rely upon located at http://www.empowher.com/media/reference/hemochromatosis.

I note at the bottom of the information that USA and Canadian resources are listed. I am wondering if you can also add our agency to the list of Canadian resources to additionally help and support those who have questions about hemochromatosis.

We are the Canadian Hemochromatosis Society and have provided information, awareness and patient support since 1980 in Canada. We are a founding member of the International Alliance of Hemochromatosis Associations. Our website is www.toomuchiron.ca

Thank you,
Robert Rogers
Executive Director & CEO
Canadian Hemochromatosis Society

October 27, 2011 - 11:24am
HERWriter Guide (reply to Anonymous)

Hi Robert

Thank you for your post!
I have submitted your request and thanks for contacting us, we have many Canadian members!


October 31, 2011 - 12:42pm
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