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.
So I have a friend who has diabetes, and is Irish. Enough of a red flag to raise my antennas! I'm thinking, he's already up to a 10% or so chance for HC.
BUT no elevated AST or ALT counts. So I'm thinking, does it make sense to prod such a person to get the simple, cheap preliminary blood test for HC? (Serum Ferritin and Transferrin Saturation) This is my motivation, but here is my question:
Does anyone happen to know...
If you already have pancreatic damage from Hemochromatosis (HC)--are you likely to already ALSO have liver damage--which would show up in a blood test as elevated AST and ALT?
By the way... If NOT...
If it's very possible an HC person might get diabetes from HC BEFORE any elevated liver counts would start showing... Then it seems to me EVERY PERSON with diabetes should get the cheap, simple preliminary test for HC to simply rule that out as the possible cause. Because if caught EARLY enough, it could possibly be reversed with phlebotomies--or at least the severity of it.
BUT no elevated AST or ALT counts. So I'm thinking, does it make sense to prod such a person to get the simple, cheap preliminary blood test for HC? (Serum Ferritin and Transferrin Saturation) This is my motivation, but here is my question:
Does anyone happen to know...
If you already have pancreatic damage from Hemochromatosis (HC)--are you likely to already ALSO have liver damage--which would show up in a blood test as elevated AST and ALT?
By the way... If NOT...
If it's very possible an HC person might get diabetes from HC BEFORE any elevated liver counts would start showing... Then it seems to me EVERY PERSON with diabetes should get the cheap, simple preliminary test for HC to simply rule that out as the possible cause. Because if caught EARLY enough, it could possibly be reversed with phlebotomies--or at least the severity of it.
Everyone is different.. My thyroid and female organs were the first to show signs of damage...and damage could not be reversed..Thyroid was fried & did not work, since age of 40, and I went through early menopause at age 32...my ovaries, were non functioning at this point and over grown with endometriosis, the biopsy on the ovaries came back high in iron at that time...But no one thought to think of HH..
What was your serum ferritin level when discovered?
Are you still having a lot of problems?
I sent this to a friend going through both HH and endo..
Objective: To examine the possible involvement of iron in the physiopathology of endometriosis.
Design: Prospective study.
Setting: Department of gynecology in a university hospital.
Patient(s): Seventy patients undergoing laparoscopy.
Intervention(s): Collection of peritoneal fluid (n = 57), blood samples, and biopsy samples from endometrium (n = 62) and from endometriotic (n = 33) and normal-appearing peritoneum (n = 53).
Main Outcome Measure(s): Measurement of iron and ferritin in serum and peritoneal fluid and staining of iron deposits with Prussian blue in tissues.
Result(s): Iron and ferritin concentrations were significantly higher in the peritoneal fluid of patients with endometriosis compared with controls during the secretory phase. Higher rates of ferritin and hemosiderin deposits were observed in the peritoneum adjacent to red (100%), black (57%), and white (62%) lesions compared with normal-appearing peritoneum (25%). Deposits were more frequent during the secretory phase than the proliferative phase in healthy peritoneum from controls, whereas they were found throughout the cycle in the vicinity of lesions in patients with endometriosis. Similar rates of iron deposition were observed in the stroma of black and white lesions and in eutopic endometrium from patients with endometriosis.
Conclusion(s): Iron overload was observed in the cellular and peritoneal fluid compartments of the peritoneal cavity of women with endometriosis. Iron deposits seem to be related to the presence of lesions, suggesting that iron may be involved in the pathogenesis of endometriosis.
Hope this helps you understand a little more..
Hugs
Cheryl
Everyone is different. However if anyone has HH the liver takes the iron load which is damaging. If there is any question, I recommend testing for ferritin and other HH indicators. You don't feel the body being damaged by HH, but it is serious and may or may not be reversible.
The HH seems to have triggered Atrial Fibrillation and arthritis in my case. So, once the Ferritin was down to under 50, I had a naturopath suggest I get heavy metals checked with a chelation EDTA challenge. Basically, you do one intravenous EDTA chelation session and analyze the urine to see what heavy metals are coming out. If you have any coming out, keep getting the chelation. In my case, I had lead, aluminum, cadmium, aluminum and others. So I went on weekly chelation treatments. I've had 20 so far.
Like the phlebotomies, after each one, I felt a small but noticeable improvement. Now after having 20 the improvement in arthritis and my heart stability is amazing. Now I rarely go into afib and I don't need to take the medication every 8 hours now - only if I am in afib.
So, I say check your other metals too. Another doctor I saw who didn't specialize in HH, but was very familiar with it due to many of her family members having it, suggested to get chelation as it would take the iron out of my heart tissue. She was not sure about it, but I found it well worth trying.
The only drawback is that it costs $105 per treatment (where I am in Vancouver) and an additional $100 per analysis. So I do the analysis after every 10 treatments. It looks like I'll need about another 5, then I'll give it a rest for about 6 months. I've also heard that once you get the metals out by chelation which does work on body tissues such as muscles, more metals will slowly seep out of deeper areas in your body.
Funny how it deposits differently in different people...
Pray the best for you with your heart!! I personally have severe central sleep apnea (the rare type, when your brain just doesn't tell your lungs to breath while sleeping)... I'm convinced that was caused by the free radical brain damage (long story, but test results support if any really wants to know I'd share)...But my reason for mentioning is because i go thru continual "tachy brady" episodes (esp in REM sleep) so I've had concern about my heart because of THAT!... My specialized "cpap" machine helps but not completely and it's the exception rather than rule when I can sleep with machine the whole night through. Anyways the best to you!!
I'm going to ask me "holistically oriented" MD about the chelation next time I see him... That's amazing your heart has stabilized from it I'm so glad!