I just got interesting/disturbing news. I've had type 1 for about 10 years. Found out when I was 30 years old. My younger brother came down with it a couple years later. Two weeks ago, I tested my twin brother's bg and we found out he was diabetic. My mom, who is a nurse, had a whole bunch of blood work done, and my twin has 2 copies of a gene associated with hemochromatosis. Hemochromatosis can cause diabetes if untreated.
I'm hopeful that this is what caused my brothers' diabetes and that maybe they can regain insulin function by reducing iron intake. I'm also wondering about my own chances of "cure."
Has anyone else here dealt with/heard of this? My endo has NEVER tested me for this even though I do not have the type 1 antibody.
this sounded familiar, so I searched our forums and here's what I got
There are actually three antibodies indicative of type 1, and even if you are negative for all three, it doesn't necessarily mean you have Hemochromatosis. Only 85-90% of Type 1s test positive for an anitbody. Well, you should be tested.
There are a number of different types of Hemochromatosis. Types 1-3 are autosomal recessive and type 4 is autosomal dominant. There are tests that can confirm the condition and there are genetic tests to confirm what type you have. Type 1 is the most common and is adult onset. Basically, the iron overload accumulates in your pancreas and poisons it. The form of diabetes is sometimes called "Bronze" diabetes.
Since Type 1 is autosomal recessive, if neither of your parents have Hemochromatosis, your chances of of inheriting it are 1 in 4. If one parent has Hemochromatosis, then the chances increase to 1 in 2. If your twin is identical and has two copies of the gene, then you will also have two copies of the gene and have Hemochromatosis (although it may not express at the same rate).
I can't tell you the prospects for treatment and curing your diabetes. I could help you look into it. I would tell you that you can quite effectively treat the condition, but iron overload can cause significant organ damage and not all of it may be reversible.
thanks for all the info bsc! you know what really kills me? i wanted to know in the beginning why i had diabetes. my endo said, "it doesn't matter." well, maybe it does! imho everyone with adult onset type 1 should be screened for hemochromatosis.
Everyone wants to know about their diabetes. How did it happen? Why me? Of course it matters. And you are right, although some suggest that only perhaps 1 in a million have hemochromatosis, the rate is probably much higher in those with T1. And of course if you have hemochromatosis or some other condition, it really really matters why you have diabetes.,
Funny this is the first I've heard of any of this. I was always told "the Dr.s just don't know why." As a 5 year old I wanted to know what I had done to get this. Now at a 34 year old I just don't care about why, I care about the insulin glucose meters and what things I can use for lows that are portable quick and work. The reason doesn't matter - what's done is done.
But it sounds like for Grego and his brother that it might be the asnwer and if any of them are planning on having kids it's super important to find out. And if it can be prevented for the future generations why not look into it.
Grego - can you let us know what you find out?
Definitely. Although simply treating the hemochromatosis may not cure my diabetes, perhaps islet cell transplant will work for me. I feel I now have some ammunition to use with my endo to get him to recommend me for the clinical program near me. I will keep you updated.
I was diagnosed with Type 2 diabetes in 1993. After 5 years had past, I was diagnosed with Hemochromatosis. My Endo did some testing and found that my high iron levels damaged my pancreas beyond repair. So in my case Hemochromatosis caused my diabetes. Both my parents, one a carrier and the other had the gene, were the factors for the disease. I would have a specialist look into how much damage has been caused and look at your options for proper management. I hope there is a chance your brother might be able to reverse or get back some insulin function.
Just following up on the situation, as promised. My brother was informed he has a mild form of hemochromatosis. It is exceedingly unlikely that his diabetes was caused by the hemochromatosis. He's just lucky enough to have 2 fairly rare genetic disorders. :)
I saw my GP and he was unconcerned about it for me. My liver tests have always been normal. Also, as you can see from my pic, I'm pretty pale.
Sigh. Interesting side-track, but nothing more.
What exactly is the lab test for hemochromatosis? I'm going to the doc this week and I'd like to ask for the test.
Both of my sons have T1 too.
I have been diagnosed with hemochromotosis and my pancreas has failed - I had a count of 9700 of ferratin (maybe different values in the USA) and a normal person is less than 250 - since phlebotomy treatment since December (over 5 liters of blood out) it has come down to 6000 - I take a pint out a week so far. However I had to start insulin 3 weeks ago (my life has changed and I cannot believe how I coped without it - such a difference) - I lost 70 pounds as my body started to eat itself!
I have been told that I only have a 6 % chance of recovering my pancreas so am resolved to stay on insulin and live life as a diabetic.
However get rid of the blood and the iron!!! Test test!!
I am so sorry to hear about your condition. It must have been such a shock to have all that happening at once!
I'm writing because you reminded me of what I had forgotten. It is so distressing to have runaway high blood sugars eating you alive before diagnosis. Thanks to you, I am reminded what an actual miracle insulin is to those of us who need it. In the beginning, I remember calling it Liquid Gold!
After years of MDI, we often get angry at the relentlessness of the treatment, but remembering that it gave me my life back is reason for celebration.
Thanks for the reminder! And welcome, you found the right forum for your condition.