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.
Hello Everyone!
I'm new to the site....obviously, but have been struggling with whatever this is that I've gotten. Over the last 1.5 decades I've lost all energy, sex drive, hair, lost weight and can't gain it back, abdominal pains, diarrhea and lately my ankles have been KILLING me.... (going on about 5 years.)
I've always had high levels of Triglycerides and high blood pressure in which I take meds for. BUT, whenever I complained about my other symptoms, my "Dr." (she's a nurse practitioner) tells me that I'm just getting old, and to quit drinking. In fact, she even made it a point to put "Alcohol Abuse" in my chart. I'm offended by it and will have that corrected if proven that I have HH.
So....a great friend who happens to be an MLT decided she would calibrate her machines using my blood.
Ferritin - 1329
AST - 28
ALT - 44
Iron Saturation - 67%
Iron Serum - 214
UIBC - 104
My siblings and I are first generation Americans migrating from Germany...
My sister is having many of the same symptoms I have, however her liver looks more like:
AST - 212
ALT - 97
Which is a clear symptom of an alcoholic diseased liver.
My questions is this, do my results look indicative to HH? I have an appointment Monday with a Gastroenterologists but wanted to get your take here to gather questions and suggestions to talk to the Dr. about....
I'm new to the site....obviously, but have been struggling with whatever this is that I've gotten. Over the last 1.5 decades I've lost all energy, sex drive, hair, lost weight and can't gain it back, abdominal pains, diarrhea and lately my ankles have been KILLING me.... (going on about 5 years.)
I've always had high levels of Triglycerides and high blood pressure in which I take meds for. BUT, whenever I complained about my other symptoms, my "Dr." (she's a nurse practitioner) tells me that I'm just getting old, and to quit drinking. In fact, she even made it a point to put "Alcohol Abuse" in my chart. I'm offended by it and will have that corrected if proven that I have HH.
So....a great friend who happens to be an MLT decided she would calibrate her machines using my blood.
Ferritin - 1329
AST - 28
ALT - 44
Iron Saturation - 67%
Iron Serum - 214
UIBC - 104
My siblings and I are first generation Americans migrating from Germany...
My sister is having many of the same symptoms I have, however her liver looks more like:
AST - 212
ALT - 97
Which is a clear symptom of an alcoholic diseased liver.
My questions is this, do my results look indicative to HH? I have an appointment Monday with a Gastroenterologists but wanted to get your take here to gather questions and suggestions to talk to the Dr. about....
You must be tested for HH. There are other disorders that might show these lab results (such as alcohol abuse). No matter what you need to get that Ferritin level down. The iron can destroy your liver leading to cirrhosis and then liver cancer. You should stop all alcoholic intake now. The alcohol and the iron is damaging your liver.
Your saturation is high and whenever my saturation goes above 40% I get brain fog and severe fatigue.
If you have HH, the iron is being deposited in your ankle joints (along with your liver and other organs) and causes arthritis.
The GI doctor should do a genetic test and hopefully order phlebotomies (taking a pint of blood) to get the ferritin down to normal levels.
Post back your visit.
Good luck.
Appointment went as well as can be expected....I guess?
His diagnoses:
Abnormal Liver Enzyme (ICD-790.5) (R74.8)
Serum Ferritin High (ICD-790.6 (R79.89)
I'm to have fasting labs done tomorrow morning and they will be sent out for hemochromatosis testing (CPT-81256)
He did not see the need for an ultrasound, or biopsy since my AST/ALT levels appear to be "normal". He did not perform a physical exam at all, just vitals.
I asked if I should have phlebotomy done and the answer was no. It will be a week or two before the results come in, and at that time he will be in touch with me.
I feel defeated. Another 2 weeks of NOT knowing what's wrong with me....
My younger sister (46) is positive for the C282Y mutation. Positive hemochromatosis.
There are starting her phlebotomy treatments immediately...
All of my siblings have or had dark hair and brown eyes. I had blonde and blue, so I'm still waiting for my results, but thought that little tid-bit was interesting.
I told my specialist about their findings....
So, I say get your ferritin down as fast as you can because in my experience, the damage it is doing to your body is almost irreversable and you have to make some big changes to have any quality of life. My ankles hurt so much some days I think I'll be needing a cane and I hate the idea of losing mobility, much less having to deal with the heart issue. Also, once your ferritin is down, do a heavy metal chelation test to see if other metals are impacting your health. I found after the chelation that my lead levels were very high, so I had 30 chelation sessions to get that under control too.
I also have stiff ankle from iron deposits. I was told early on (2002) that once the damage is done to the joints they do not recover like the liver and the pancreas, that is organs, in the early stages.
That ferritin must be brought down before the iron does any more damage as DougL mentions.
I'm trying to build up courage to get this done. I have all of my parts, and having a hole poked in me doesn't sound appealing at all!
Everything I've studied on HH says that having the H63D/H63D mutation means that my chances of Iron Overload is very, VERY rare. So I'm wondering how much of this is really HH related?
I've also been referred to an Oncology Hematology Clinic to start phlebotomies, but it's been a week and I haven't heard back as to when I'm to start treatment.
Monday I get the second bloodletting. Liver ultra sound is fatty. I guess that is better than some other alternatives.
Does anyone have trouble keeping the hemoglobin up?