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As you probably know, hyperpigmentation of the skin is one of the symptoms of hemochromatosis/iron overload. My skin doesn't look tanned all over, but I have hundreds of brown spots on my skin.

I did have (and still have) palmar erythema (reddening of the palms of the hands and soles of the feet), which can be a symptom of hemochromatosis, but I think it can also be a symptom of liver damage and some other diseases/conditions. At one time, many years ago, the palms of my hands turned orange, and I rushed to the doctor. The doctor asked if I was taking beta carotene (a form of Vitamin A), and I said yes as a matter of fact I was. The doctor said my orange palms were a side effect of the beta carotene, so he said to stop taking it and the orange color would go away. I stopped taking it, and the orange color went away. But I still have red palms and soles.

Hemochromatosis can cause thyroid disease. I had a goiter that came and went, beginning in my early teens and throughout adulthood. No one noticed my goiter when I was a teen (but now I see it very obviously in some of my old photos), and as an adult my thyroid tests were sometimes abnormal and sometimes not, fluctuating between hypo, hyper, and normal. But I was never diagnosed with thyroid disease. When I developed a goiter again in 2006, my doctor said my thyroid gland should be removed. I had a total thyroidectomy, and the pathology report noted that my thyroid gland was brownish red in color. I had not been diagnosed with hemochromatosis at that point in time, but after I was diagnosed with hemochromatosis, I asked my doctor if the brownish red color of my thyroid was normal, and she said no, it's supposed to be pinkish red, not brownish red. I asked if the brownish coloring could have been caused by iron, and she said yes. Since iron causes inflammation, I assume my thyroid was being irritated and inflamed by iron, and that's why my thyroid blood tests fluctuated, and that's what caused the gland to swell (the goiter), in my opinion. The pathology report said that I had a benign goiter. I wish that I had never had my thyroid removed, because ever since then, I've had numerous additional problems and symptoms caused by not having a thyroid gland. For me, taking a thyroid hormone pill is not a good replacement for the vital functions of the thyroid gland.

Here's an article about a possible link between hemochromatosis and Hashimoto's thyroiditis:
[url]http://www.ncbi.nlm.nih.gov/pubmed/18299688[/url]

I also have an autoimmune disease called myasthenia gravis. I have no idea if hemochromatosis has anything to do with it. I also have severe osteoporosis. Hemochromatosis has been implicated in osteoporosis. I'm also hearing-impaired. Hemochromatosis has been implicated in hearing loss.

Almost every symptom of hemochromatosis can also be attributed to other diseases, so it's very hard, if not impossible, to determine what is actually caused by hemochromatosis. In all of the reading I've done about hemochromatosis, here is a list of the diseases and conditions it can cause (The list is incomplete. I keep adding to it when I discover new information in medical journal articles):

Adrenal Glands: Insufficiency

Arthritis: Chondrocalcinosis

Bones: Arthritis, Osteoporosis

Cancer: Liver (Hepatocellular carcinoma)

Diabetes Mellitus

Hearing Loss

Heart: Angina without coronary artery disease, Cardiomyopathy (Congestive and Restrictive), Heart Failure, Irregular heart rhythms, Pericarditis

Liver: Cancer, Cirrhosis, Enlargement, Fibrosis, Hepatitis, Liver Failure

Pancreas: Diabetes, Dysfunction

Sex Organs: Impotence, Premature Menopause

Skin: Bronze or Gray, Hyperpigmentation

Thyroid: "Thyroid gland involvement is manifest by thyroid tissue inflammation and fibrosis, with initial hyperthyroid function followed by low thyroid output. Unfortunately, hypothyroidism does not improve with treatment. It might even continue to worsen despite treatment." (I'm sorry, but I didn't keep a record of where I got that quote from.)

Donna/Snowgoose
FLFlowergirl: My hematologist wants the MRI to check on iron damage to the liver. I had an MRi of abdomen 4 years ago and liver was normal at that time. She and my endocrinologist both keep wondering why after being on a very strict gluten free diet my other organs are being damaged so have ruled out all the other autoimmune diseases with a rheumatologist in Boston (ANA is also mildly elevated). She mentioned phlebotomy if numbers continue to be up even if MRI is negative, to prevent damage to liver.

FLFlowergirl, what is the US your DH had? What does the gastroenterologist do to check organs? Also which tests did your children have to screen for hemochromatosis? My daughters both need to be tested but would like to tell them which tests to have-probably gene tests and all the iron tests. At this point they are both anemic.


Robine--I'm glad that you have other AI things ruled out as a cause. Your ANA can be slightly elevated from Hashi's.

I also have read that until your ferritin (for women) has exceeded 200 they would not prescribe Phlebotomy, I'm not sure if that's correct though. Also, after iron stores are filled this is when iron overload happens and then damage occurs to organs. If you haven't had ~high~ ferritin numbers I don't think that you have anything to worry about, but I know it is very concerning.

My husband's doctor does the US ultra sound first then CT scan and then MRI in this order. There was no damage shown in any organs. His ferritin is 27 and they don't want him to go monthly anymore, they have prescribed every 4 months. They don't want to make you anemic. The doc said that it is different for each person as far as the rate of unloading iron. He has one patient that he cannot get to lower the ferritin after years. In my husband's case it took two years to unload. The ferritin unloads at a faster rate if there is organ damage also.

For my children it was recommended to have first a Ferritin then Iron panel and DNA testing in this order. The DNA tests were assays to detect the two mutations C282Y and H63D that are commonly associated with HH.

IMO a GI doc is the best to see for this because they handle these cases on a very regular basis. My Hematologist said that my husband should stay with the GI doc for care when we asked who he should be seeing for this. He is monitored very closely through blood tests and phone messages. He only has to go in once in a while. The doc said at this point he doesn't even recommend another MRI. Hope you get answers soon.





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