People, it’s a disease with much more serious repercussions than discoloured skin on your face. If you have this and the skin discolouration goes away after treatment then that’s brilliant but really you should be more thankful that your skin condition helped you prevent a disease that is seriously life threatening.

I’m not the author of this site, but thought that I could try to answer some of your questions. I am female, early 30s, have haemochromatosis and was also recently diagnosed with low ferritin. The latter is probably due to eating a vegetarian diet and avoiding iron-rich foods, and drinking way too much black tea (to reduce iron). I too, have some very mild melasma (and don’t take the pill and am not pregnant). So, to answer your questions:
1. Yes, a person with a hemochromatosis diagnosis can have low ferritin and/or serum iron levels. In my case, I took (cautiously!) two 40mg iron tablets per day for 3 weeks and my ferritin levels went from 1.4 ug/L to 43 ug/L. BUT, I did this getting a blood test at the 3-week mark. The general doctor I saw told me it would take 3-6 months to replenish the stores – just goes to show how little experience some medical people have with hemochromatosis.
2. Sorry – I have no experience with this.
3. Not sure about hemochromatosis and thyroid relationship, but I had a one-off overactive thyroid years ago which was successfully treated with traditional Chinese medicine and acupuncture and has never returned. This was a 4-month process where I also had to make some lifestyle changes, and changes in bad thinking patterns, too. The reduction in stress was, in my opinion, a key factor.
4. According to my gastroenterologist, symptoms of hemochromatosis can by definition *only* appear when you are actually overloaded with iron (high ferritin stores). In that sense, hemochromatosis is very easy to treat – get iron studies done regularly to ensure that everything remains within the normal ranges.
5. I see a gastroenterologist at least once a year for a liver scan, and I get a full blood examination twice a year (iron studies, TSH). If you do have hemochromatosis, I would only recommend giving blood (phlebotomy) when your ferritin stores are too high (upon proper medical advice), NOT just because you have a hemochromatosis diagnosis.

More good information on hemochromatosis and low iron can be found here (page 3):
http://www.irondisorders.org/Newsletter/mj05.pdf

Information on “idiopathic melasma” can also be found here, suggesting a hormone imbalance as the cause:
http://www.skinandaging.com/article/1363

Wishing you good health and all the best

I have been on oral contraceptives for several years and have noticed a slight skin discoloration especially on my chin mostly during summer (which I thought to be a known side affect of the pill) Now I have gotten off the pill two months ago. My body feels a bit better but I am still constantly tired and could sleep forever…also noticed some hair loss and self diagnosed myself with iron deficiency (which I have a history of) so I started taking iron supplement (double dose! …)and eating iron rich foods…my skin discoloration is gotten so much worse in the last few days a friend commented on it and I finally looked it up online and now it all makes sense….I assume I could still have melasma (stronger symptoms might be due to summer sun) (does melasma become a permanent condition?) or I might just have HH…..

My questions would be:

I have a really high deductable health insurance/catashrophic ($2500).
If I get the online testing done and it turns out that I have HH how do I handle getting medical assistance? The doctor will not tell the insurance co that I have HH and will still arrange for any necessary tests and treatment? (I most certainly would not like to become un-insurable, the HH soc. website recommends to keep your records private?) Or they will simply arrange for the blood letting without letting insurance know? Or the doctor will just tell me to go to the local bloodbank? Could I just go there (after getting an online diagnosis) an donate blood….?

I am getting married in two months and blotchy skin and falling out hair is quite depressing… also my fiancee has a really good insurance coverage and I would be getting on his plan after we marry. Is a diagnosis is something that could make them reject me?

thank you so much for any advice and support,

Have a lovely summer!

Just replying to my own post here as I have some new information. I spoke to my gastroenterologist, who says that low ferritin means that the melasma cannot be coming from the haemochromatosis (i.e. symptoms of haemochromatosis only appear following excessive ferritin stores). This is precisely why this condition is so treatable in the early stages.

Back to the copper issue… now I suspect that when iron is low copper can dominate and possibly be responsible for the melasma.

So, it’s important to also be aware that people diagnosed with genetic haemochromatosis (like myself; homozygous on the C282Y gene) can still be anaemic, and as an interim measure, prescribed iron supplements under very strict observation (i.e. regular monitoring of ferritin stores).

Firstly, what a revelation your posting was to me. Thank you for sharing your experience.

I have some faint “melasma” on my forehead (appeared only after sun exposure), and was diagnosed with haemochromatosis a few years ago in my 20s. I suspected that the melasma was caused by copper overload (as I’m not on the pill but am vegetarian and my diet is innately high in copper). Now I’m investigating the possibility that it’s iron-related. I have some questions:
1. How is your skin now, after the bleedings? Is the difference dramatic?
2. Do you still need to wear sunscreen?
3. If a haemochromatosis patient has low ferritin levels, do you know whether the haemochromatosis could still be responsible for the skin pigmentation?
4. I have no idea of how to find out what is causing the pigmentation: my measured ferritin is low (was too high a year ago, but I brought it down by giving blood once and drinking lots of black tea) and blood copper measurements are considered unreliable… sigh.

As an interesting aside, I read on the internet that 90% of haemochromatosis sufferers will have some kind of skin pigmentation disorder.

Any feedback on the questions would be sincerely appreciated.

I am so glad you found it in your 20s! Good health to you and yours.