Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I am a 34 yo male, and have had a long history of vague abdominal pains, chest pains, stiffness/soreness in my fingers, and most recently headaches. Every time I have had a blood analysis over the past 10 years or so, I have had elevated liver enzymes AST and ALT, not drastically high, but 2-3 times the upper limit. It's been attributed to fatty liver. Most recently, I saw a headache doctor for the recent daily tension headaches that I've been having over the past few months. She ran my ferritin levels, which came back to be 485. From what I've read, this is not extremely high, but maybe high enough to take action. Sooo... I'm thinking to return to the doctor and have her run my transferrin saturation. All this has got me wondering, is the high level of iron causing some of my vague symptoms and headaches?
Also, does anybody know of a good hemachromatosis doctor in the Denver area?
Also, does anybody know of a good hemachromatosis doctor in the Denver area?
Ferritin of your level is not near safe level at all. Optimal is under 50. Having a fatty liver will cause a person to load iron more quickly. But an elevated ferritin is also indicative of inflammation or infection...so you NEED to have a TSAT. In fact, an elevated TSAT along WITH ferritin is the best indicator of having iron overload, but there are other tests. TSAT over 50% is cause for investigation and so ferritin can be run and if that is also elevated over the range then they do further investigation, like gene testing.
Having a lower TSAT can be quite "normal" in early stages of iron loading. ANd it is ferritin that is not the very good indicator when taken on it's own, as it is an acute phase reactor so it is elevated as a result of other underlying conditions. My husband's fatty liver was listed as the "cause" of his elevated liver enzymes, but it can have a cause and effect both ways. Fatty liver can be a result of iron loading and iron loading can result from fatty liver. Main thing you need to do is get the inflammation, reflected by your liver enzymes down as soon as you can - liver inflammation leads to liver damage. You need to get your blood sugars measured to find the cause of the fatty liver, if there is no alcohol involved then you need to consider diet and lifestyle. But once you have fatty liver, you need to take steps to correct it before it causes other issues.
Until you get the other testing done to confirm the diagnosis of HH (Hemochromatosis) or HHC (Hereditary Hemochromatosis) no one can comment on the cause of your ferritin levels. I can tell you that the symptoms you describe can also be part of HH and HHC. Ferritin is an expression of iron storage levels...
SOme reading you can do if you like...while you wait for further testing.
http://www.lef.org/protocols/metabolic_health/hemochromatosis_01.htm
http://www.irondisorders.org/iron-levels-tests
This page will explain all the tests and what they mean as well as in which situations you would have elevated levels of each. Liver enzymes is an important factor in iron loading.
http://www.irondisorders.org/iron-tests
So, hope some of this helps...feel free to ask anything from what you read or come across and keep us posted as you know more.
Take care, C
Serum Iron: 98
TIBC: 323
UIBC: 225
Saturation: 30%
Ferritin: 394
My ferritin has come down from the first ready of 485, but is still elevated (although the Dr. says this is completely normal!). TSAT seems to be normal. Guess I will have to continue investigating other causes of my vague symptoms!
Hope fully it is not, but now you have come this far, it is s good idea to get it checked. My drs also told me I was not at risk, but I went and had the gene test done as my levels were not optimal and some elevated and my DNA came back positive.
1 in 8 people are carriers. Not a small number and not rare. Good to rule it out as you are young and can prevent damage from taking place as you get older if you do continue to load iron. Ferritin levels and iron levels also can flucuate.
Just my advice, having come from over 12 years of trying to get to bottom of my husband's problems and having them "attribute" his problems to something else and not looking at the red flags like in your case.
Take care, C
23andme site has the DNA test for 99$. Also Iron Disorders Institute and Canadian Hemochromatosis Society. The last two are more expensive, but I feel a good investment in your health to get it done, even if dr not willing.
I asked her if my iron levels being elevated could be an issue. She has since ordered a HH gene test..waiting on results.
My test results show:
Ferritin: 449.7
Iron: 153
Transferrin: 180
Saturation: 57%
TIBC: 268
My tsh was normal.
I have not wore my watch for 9 months yet I still have the indent from the band and have skin discoloration for where the watch was. Headaches, loss of energy, joint pains, hair loss...
She was skeptical in thinking hemochromotosis because of my age, but after I showed her my wrist, she decided to run the gene test to rule it out.
However. Treatment is simple. Give blood. No Pharmceuticals etc. I was by luck diagnosed 21 years ago. First diagnosis was cyhryrosis of the liver. Huh? Did a lot of draws early and now I do 6 draws (plebotomies) a year and watch my Ferritin level.(and TBIC). I am now 80 years old, Feel Good. Np problems, no symptoms.
It's pretty hard to believe HH because you don't have a rash or obvious problem. But it is there. Read up on it. My children have it and one of my grand children does. Simply hereditary. Get the test and have relatives take it also. It won't go away, but treatment is easy. Good Luck.
A Hooray and thanks to the Red Cross Special Collections who have graciously drawn the blood for 21 years. Lots of worse diseases out there and lots of worse treatments. Get that second opion if necessary. . .