Once again our lives are turned upside down by yet another set of tests that reveal that all previous diagnoses on Laura were wrong. According to latest test results Laura has NEUROGENIC DIABETES INSIPIDUS, more commonly known as Central Diabetes Insipidus due to a lack of VASOPRESSIN production in the brain.
With that being said here is the low-down. In a previous post somewhere on here I mentioned that my parents were very closed mouthed people and don't discuss anything personal unless absolutely necessary, I also mentioned that it wasn't until after Laura was diagnosed with a Thyroid condition that my mother informed me that she has a disease called HEMOCHROMATOSIS (excessive iron in the blood that has to be filtered much like donating blood to the Red Cross procedure). This fact was brought up with Laura's previous Ped Endo, previous PCP and also shared with new PCP and new Ped Endo. Remember I also said at Laura's appt. with her new Ped Endo a whole slew of blood tests were ordered, well, today I got a call from her Ped Endo explaining various test results. Since that conversation where she explained that she believes that this is the type of diabetes Laura has and why and after I myself doing extensive research all morning since the call this is what I've learned in the best layman's terms I can give.
Hemochromatosis (US spelling) Haemochromatosis true spelling…is a hereditary disease characterized by excessive absorption of dietary iron resulting in a pathological increase in total body iron stores. This disease is also known as siderophilia and bronze diabetes. Humans, like virtually all animals, have no means to excrete excess iron. Excess iron accumulates in tissues and organs disrupting their normal function. The most susceptible organs include the liver, adrenal glands, the heart and the pancreas; patients can present with cirrhosis, adrenal insufficiency, heart failure or diabetes (do you see where this is going?)
Signs and symptoms of hemochromatosis usually don't occur until middle age and vary based on how severe the disease is. If it is not found and treated early, iron builds up in your body and can lead to problems with the liver, the heart, the adrenal glands, Diabetes, especially in people who have a family history of diabetes (Laura is 6th generation on my father's side of the family), changes in skin color to a gray or bronze color (no folks that isn't a tan she's sporting) and underactive pituitary and thyroid glands (Laura has hypothyroidism~underactive thyroid) and also joint damage and pain including arthritis can be caused by hemochromatosis.
With all of that said, and the test results, Laura's Ped Endo believes this is the type of Diabetes Laura has and not type 2 or type 1 (which she had said all along she represented symptoms of both types and was more like a type 1 1/2 than a true type 2 or type 1)
Treatment~ We now have to make another trip back to see the Ped Endo on Monday rather than on March 20th as previously planned. We already know there is nothing that can be done for the Thyroid condition, her thyroid was destroyed and she will still have to take a pill everyday for the rest of her life to replace that function…she will have to have her blood filtered to reduce the amount of iron build up in her blood, it was explained this will be 3 days a week for the first few weeks then once the levels are back to normal she will have it filtered once every 3 months…I should point out she said there is no cure for hemochomatosis therefore these steps will also be a lifelong commitment. She will be given some sort of synthetic vasopressin to replace what her brain is not producing. And she will continue to be treated as a diabetic on the metformin for the time being, the Ped Endo said this will change over time and there is no guarantee that she will ever be off of some sort of diabetes medication and once damage is done it cannot be reversed only controlled.
So, there you have it, my mother's family had the gene for hemochromatosis, my father's family had the diabetes gene and I was a carrier of the hemochromatosis and a sufferer of the diabetes…guess you could say my daughter didn't have a chance in hell. I do not blame anyone, genetics are genetics and nobody knows how they will affect any of us prior to birth and life it just sucks that things that don't normally happen to children, seem to be attracted like a magnet to our daughter.
Anyone have any insight on this type of diabetes?
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