• Wed, Sep 24 2008

Miracle Skin – A Perception Shift

melasma or hemochromatosis photo.jpg

I have this skin condition called Melasma or Pregnancy Mask. It’s a condition that often develops during pregnancy or while taking birth control and it brings hyper-pigmentation to the skin, generally causing brown splotchiness. Some dermatologists say it’s caused by sun damage.

I wrote this cool little article on melasma last year called Can a Leopard Change Her Spots? That article has transformed into something I never expected – becoming a board where women from all over the world can share what they know about melasma with 500 comments. The ladies report on which products work to fade the melasma or which products or regimes, laser treatments they try which didn’t work. The participants save their fellow melasma sufferers some money and share their frustrated body image issues with each other.

It is to these sisters of mine that I want to talk to today.

“That’s not melasma,” my doctor recently told me. “That’s bronzing of the skin caused by too much iron in your liver, that’s a symptom of hemochromatosis. It should go away when we bleed you.”

“Really?” I asked.

“We’ll I can’t promise. It should. We’ll see.”

{{{{{Perception shift}}}}}

The symptom of my condition was staring me in the face every time I looked in the mirror – I missed it. My doctors missed it. We all knew I had it.

I have hemochromatosis. I’ve known I had hemochromatosis for 10 years. I’ve had hemochromatosis the whole time I’ve been treating my melasma that coincided with my pregnancy, which coincided with my not treating my hemochromatosis. My OB/GYN, the doctor I was seeing during pregnancy and right after, called my skin condition pregnancy mask (which is the layman’s term for melasma). The timing and symptom seemed right. He knew, of course, that I had hemochromatosis, but he did not know that a symptom of hemochromatosis looks very much like melasma. I haven’t seen my hemochromatosis specialist since before that pregnancy.

So here is what I want to say to my sisters out there who are treating their melasma, spending tons of time and money and emotional energy, and not seeing results – get tested for hemochromatosis.

You may have hemochromatosis. You may be treating the wrong condition. Your skin may be a symptom of something that may, in fact, be life threatening.

hemochromatosis forehead.jpg

What is it?

Hemochromatosis is a mutation of the HFE gene. It’s an inherited disease. There’s nothing you can do to prevent it, nothing you do to cause it, and there is no cure. Around 8% of the population has this genetic condition.

By definition hemochromatosis is iron saturating the liver. Iron doesn’t leave the body properly in patients with hemochromatosis.

Iron is necessary for a healthy life, but too much of it sits in the liver and poisons it and other organs.

There is treatment.

The treatment is to remove blood from the body, giving blood.

They used to use leaches, now they use needles.

Untreated, hemochromatosis can be life threatening.

Women rarely find out they have hemochromatosis prior to menopause because they naturally rid themselves of just enough iron to mask the disease through menstruation, pregnancy, birth and lactation. That’s also the reason I hadn’t been to the doctor in a while – my body was using gestation, birth and lactation to rid itself of iron. Now the baby is over 2 and it’s time to start being bled again.

If you do not discover you have hemochromatosis and it goes untreated there is a high risk of liver disease, heart disease, diabetes, and others.

If you find out you have it early enough and it is properly treated, those who have hemochromatosis will live a long and healthy life.

I found out I had it in my 20′s. I am lucky. I found out in such a lucky way, after being misdiagnosed with both depression and mononucleosis. My doctor was trying to get me to up my anti-depressants.

I am not depressed, I’ve got a great job and I’m happy about my life. I just can’t stop sleeping. I am so tired I could sleep 20 hours a day,” I told him. “Maybe I’m anemic, I read about exhaustion from anemia in a magazine,” I told him.

“If you rub real gold on your arm and it makes a black mark it means you’re anemic,” I explained as I showed him the black marks from my ring.

“That’s an old wive’s tale,” he said.

“Let’s bet on it. Test my iron levels. I bet I’m anemic,” I challenged.

The quirky bet with my doctor saved my life. I was not right. I was not anemic. But, I somehow, someway – by a miracle really – had asked for the right test after reading an article and illustrating an old wives tale. The test I requested showed dangerously elevated Iron & Ferritin levels. My liver biopsy tested positive for hemochromatosis.

This could be your quirky moment and this quirky moment could save your life (and treat your skin condition).

If you have melasma that doesn’t seem to respond to treatment, please, get a test for hemochromatosis. What you have previously seen as an emotionally frustrating skin condition – could shift into the symptom that points to a diagnosis that saves your life.

Wouldn’t that be a miracle – a shift in perception?

The best way to find out if you have hemochromatosis is to test for the HFE gene. You can ask your doctor to order this lab test if you have great insurance.

The American Hemochromatosis Society website recommends finding out you have this at home, without involving your insurance company. This is a serious diagnosis that could adversely affect your future insurability, they warn.

You can do the lab test from your home through a company like HealthCheckUSA. Just take a sample of your own cheek with a swab and send the results in to find out if you have hemochromatosis. It costs around $200.

If you have hemochromatosis you’ll need to find out your Iron and Ferretin levels with another lab test, Iron Profile, for around $50.

If your lab results come back with dangerously elevated Iron and Ferritin levels you’ll need to be monitored by a doctor and undergo more tests to make sure your vital organs are undamaged.

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  • Rachael

    Wow! That is so interesting! have you had the chance to be ‘bled’ yet and did it go away?

    I am going to look into this more, very interesting! Thanks for your site, it has been a lifesaver!

  • http://www.blogfabulous.com Tracee Sioux

    Thanks for asking Rachael and thanks for the compliment.

    I’ve been bled twice since the doctor diagnosed it. It has faded, though it is not completely gone. Next week I’ll find out whether I need more bleedings.

    It will be interesting to see if my face will be the correct indicator of my iron & ferritin levels.

  • Merry

    Thank you Tracee for the warning, I am looking up that website right now.

    Best of Luck, thank God you found it.

  • amy

    Thanks Tracee….I already made an appt. to get my Iron levels checked by my doctor.

    Also…did the blotches go away after they took blood?

    thank you for starting this forum.

  • http://www.blogfabulous.com Tracee Sioux

    make sure to ask for the HFE chromosomal test not just an iron test – you could have normal iron levels and still have hemochromatosis.

    You’re welcome.

  • luls

    Very interesting! Your melasma looks very different than mine. I have less mottled, and more big patches on bridge of nose, both cheeks and middle of my forehead. Mine is from accutane, and backpacking through Europe with insufficient sunscreen…I saw it happen. But my sister’s looks like your pattern, so I will tell her about it. Thanks!

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  • Lisa

    Thanks for getting the word out about Hemochromatosis, I have it too. I knew it ran in my family because my great Aunt was diagnosed with it about 1 month before she died of kidney failure, too late to treat her with bloodletting.
    My symptom was constant stomach pain & when the Dr did a blood test, I had elevated liver enzymes. I mentioned my great Aunt’s death & the Dr ordered the HFE gene testing. We now think that my grandmother’s liver cancer was probably caused by undiagnosed hemochromatosis. It is much more common then we think & the more people who know about it the better…thanks for spreading the word!

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  • Cindy J

    Low iron is so common in women more women should find out about it.

  • Leah

    Tracee’s “melasma” doesn’t really look like the typical melasma though. I think melasma really is more specific spots and areas on your face, but the rest of your skin is just normal. Her’s looks like more of a tan or general pattern all over. If I am definitely anemic, which is very low iron, I don’t think I could have this as noted because it stems from HIGH levels of iron, right?

  • http://www.blogfabulous.com Tracee Sioux

    Leah, it started as a few spots on my forehead and then spread as my condition worsened and went untreated. It was confusing because melasma literature discribed the same thing as sun exposure.

  • http://www.blogfabulous.com Tracee Sioux

    Oh and yes Leah you can be both anemic and have hemochromatosis – especially if you are a pre-menopausal woman.

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  • amy

    I am currently 10 weeks pregnant and have hemachromotosis. My Dad passed away from it, and my mom is a carrier and thats why I got tested – 2 out of the 4 kids in my family have it. I have know for about 2 years and had phlebotomies done before I was pregnant, the last one about 6 months ago. My levels were brought down sucessfully. I am still waiting on my doc to see what to do now. I should hear back today. FYI do not take iron supplements if you are pregnant or trying to get pregnant if you have this – very bad for you.

  • http://www.blogfabulous.com Tracee Sioux

    wow – Amy you’re the only woman I’ve ever met who also knew she had this when she was pregnant.

    We did no phlebotomy and the breastfeeding took care of it for a year after the baby. You should be fine.

  • Sarah

    Hi All. Trying to get any information on being pregnant and having haemochromotosis is next to nothing but this is really helpful. I fell pregnant in 2005 with my first child and from the one go I was permanently shattered. I had what i thought was the symptoms of anaemia so went out of my way to drink OJ and eat iron rich foods. Needless to say it never made me feel better but rather worse. I bloated and put on loads of weight and by the end of my pregnancy, i had no strength to do anything. After having my first child in July 2006, I hoped that I would start to feel normal again. The midwife confirmed that I wasn’t anaemic when I was pregnant so thought it was just a case of excessive weight gain. After 5months of feeling permanently shattered and having no strength to look after my own child, I went to my GP as I thought I was having early menopause (at the tender age of 29!!!). She did a full blood count and every test under the sun with my bloods and it was then that my serum ferritin levels came up at being nearly 600 (normal range under 300). Thankfully my gp is on the ball and requested that I had the test done to confirm HH. A few weeks later it come back and confirmed I did. Had an ultrasound on my liver which is fine and everything else is fine. Had bi weekly venesections to start off with for a few months and then monthly venesections after that. I since fell pregnant again with my second child in July, due in May 2009. I regulary see haemochromotosis consultant to check my transfer saturation levels. They initially thought that I would probably not need the venesection and might end up anaemic but having had a blood test done a few weeks ago, my saturation levels have gone above 50% to 75% and so will need another venesection in a few weeks time. My pregnancy and overall health of myself both mentally and physically is so far apart from my previous experience. I haven’t bloated or gained as much weight although I haven’t changed my diet other than the obvious. I am a bit tired but can actually function on a day to day basis with a full time job and a 2 1/2 year old daughter when at home. I owe my life to my GP for believing in me (my mum, dad and little sister have since all been tested for it and are carriers) and am like any other normal person who is 23 weeks pregnant. I am sad that I didn’t know about this before my first pregnancy but so pleased that I a) know it wasn’t me being depressed b) there is something there which is now being treated. My overall view on things have changed radically and only hope that research for this continues. I have also been told that I can donate my blood when I have my venesection which does please me.

  • http://www.blogfabulous.com Tracee Sioux

    Sarah I am so happy for you. If you have it it is no big deal. Never heard of anyone who was also pregnant with hemochromatosis until now.

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

  • http://jjames0009@aol.com Sarah James

    I am so glad to hear that it is okay to have hemochromatosis and get pregnant. I did have complications during my first pregnancy that I would now consider related to the disorder since recently finding that I have it. I was worried that I would have a hard time again if I got pregnant. This information helps me to know that as long as I do not take iron supplements or vitamin c, and get “bled” if needed, I should have a normal pregnancy.

  • louise from england

    Hi,Thanks for the useful information on melasma and hemochromatosis,which i had never heard of.
    I have had the same patches as you on my face for the past year and half and they are gradually getting worse. I am due to see doctor about it this wek as it is really getting me down,i just feel like i have a dirty face the whole time. I also suffer with extreme tiredness(cronic fatigue) but am now wondering weather it is all connected. My problem diddent start when i was pregnant as my children are now 13 and 12 all i could put it down to was i had a very bad reaction to some shampoo nearly 2 years ago which affected my face and neck which i had to take steroids for.
    If any of this sounds familiar to any one please reply.
    Many thanks for your useful articles.
    louise

  • KittySpotty

    wow, thank you so much for sharing your story!!! the idea of something going awry on the inside showing up on the outside makes so much sense to me.

    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!

  • http://notmymother.net Not My Mother

    There is haemochromatosis in my family. We discovered it after my uncle was found to have liver and stomach cancer, which was caused by it. My mother and all her siblings (she is one of 10), and most of their children were DNA tested. We discovered another uncle has it quite seriously, and my aunt has to give blood every 2 weeks to keep her iron levels down. Everyone else is just a carrier, thankfully.

    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.

  • http://paintingmyrosesred.blogspot.com Laura

    Just wanted to say thanks for posting this picture – I’m a med student, studying hemochromatosis right now, and I couldn’t get a good visual for what the skin pigment change looked like – and now I have one! So, in effect, you may have prevented me from making the same mistake with my future patients that your doc made. :) Thanks.

  • Electra

    This looks a wee bit too familiar I’ve had this odd bruising/pigmenting since i was 18 docs have just been like i dunno I’ll get my docs to screen for it.I have liver problems in the first place was born with hep c and now my blood levels are all going wonky.Probably from liver problems. Thankyou for the post.

  • Neil

    THAT is what the bronze skin looks like the doctors talk about, I always imagined a bronze like tan!!!??? Thanks for posting

  • Chantelle

    I’m a married 28yo mother of two cute children ages 7 and 1. I seem to have all the symptoms, hair loss, weight loss, pigmentation on my face, tanned skin, always feel like I want to sleep the days away, hardly any sex drive. I was tested for hemochromotosis a month ago, after thinking I was anemic. I had a full blood count. My tests came back ok, apart from my iron levels where high. So my GP tested me for hemocromotisis. I got my tests back today and it seems I am a carrier of the gene, I don’t neccisarrily have the disorder itself. But he is testing my iron levels again in three months and told me there is a very rare chance that I could have hemoromotosis but wants to test again to keep an eye on it.
    I want to know, if anyone who has the carrier gene ever get hemocromotosis?

  • Debra

    yes, you can be a carrier and manifest symptoms. There is a book called Living with Hemachromatosis (HH) I got from the library that is very informative and easy to understand. There are personal stories in it of people who are carriers who develop the same symptoms as those who have both genes. Carriers have one gene, those who “have” HH have two genes. There are two identified mutated genes that cause HH C282Y and H63D. There are other iron disorders, though, and much is still being discovered about it.

  • DeAnna

    I have been online researching for melasma treatment and I found a your photo and it looks just like my face. It happened when I was preganant with my 6 year old daughter and it never went away. It really never did resemble the preganancy mask, but I associated it with that since it happened when I was preganant. I also have a patch on my side and back that I know has not been there all of my life. What are some of the symptoms of the hemochromatosis?

  • Yvonne

    Hi all, i found out i have hemochromatosis recently and i am going 2 the specialist next month! I came off birth controll pill last month as i hopeing 2 become pregnant! Is it safe for me and the baby if it does happen because of having hemochromatosis! Very confussed:-/

  • Dee

    OMG! Thank you for writing this. I went to Functional Medicine Chiro whom asked me to ordered and PAY for a bunch of tests. I was fatigued a lot and was at my ends wit. I am in my 40′s and noticed the last 3 years that my skin was becoming golden freckly looking and thought this was aging and appropriately normal.

    My Chiro showed me the blood test and pointed out the my Transfer and Serum Iron levels were a little high off the scale but not ridiculously high.

    Thank you for the the Insurance tip. I am going to order the test and pay cash. Hopefully I don’t have this but I do have elevated iron for some reason. I would hate to have my insurance drop me. My boyfriend has Ulcerative colitis and he had a hard time getting insurance and the policy sucks. SO THAT TIDBIT OF INFO may have saved me from not having health insurance or paying out of the wazoo since I am self employed.

  • Katie @ Imperfect People

    I just got diagnosed with it too! So glad to find you!! I often wondered what the “bronzing of the skin looked like since I have natually dark skin and wondered about that. So glad you wrote about this!

  • katie @ Imperfect People

    Do you have one gene copy or two?

  • maria

    the best article that I was looking for my hyperpigmentation for more than 11 years……..tk. tk. tk.

  • erika

    Did your spotting get better after you started getting drained??

  • anon

    Hi Tracee,

    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.

  • anon

    Hi all,

    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).

  • Summertime

    Tracee,
    Oh man oh man! I just found this website and I feel like my quest to figure out what the hell is wrong with my skin might possibly have a direction. When I look at your picture I feel like I am looking in the mirror – my “melasma” looks so similar and has not responded to ANYTHING that I have tried. Also, my extreme fatigue has been treated with anti-depressents, and my thyroid has been back and forth and treated with medication and then mo medication -blah blah blah! I am interested in learning more about hemochromotosis while I am waiting for my blood test and DNA test to come back. I was hoping you would be willing to answer a few questions.
    1- can your ferritin levels be normal or low and still have hemochromtosis?
    2- does your bleeding help your splotches?
    3- could having hemochromotosis affect your thyroid function?
    4- can symptoms of hemochromotosis come and go – can things aggrevate symptoms?
    5- what kind of doctor would be the best at treating hemochromotosis?
    Whatever information you would willing to share would be so great – Thank you thank you.

  • anon

    Hi Summertime,

    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 :-)