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.
Hi ladies and gents! I was reading SingleCop's thread and I was awe struck at how many similar symptoms we seem to all have. I want to make a list and with your help, I want to shoot this list out to a few different doctors, organizations, etc. on the internet.
Now I will start with the main symptoms associated and readily found on the internet. These are copied from the Mayo Clinic's website...
-------------------------------------------
-Arthritis, especially in your hands
-Chronic fatigue
-Loss of sex drive (libido) or impotence
-Lack of normal menstruation (amenorrhea)
-Abdominal pain
-High blood sugar levels
-Low thyroid function (hypothyroidism)
-Abnormal liver function tests, even if no other symptoms are present
Advanced-stage signs and symptoms
In later stages of the disease, you may develop serious conditions such as:
-Cirrhosis a condition marked by irreversible scarring of the liver
-Liver failure
-Liver cancer
-Diabetes
-Congestive heart failure
-Cardiac arrhythmia
-Discolored skin that's bronze or gray in appearance
------------------------------------------
That being said, there are some other symptoms that I've noticed among this group. Please feel free to list anything that you have noticed. This can be in recent days or symptoms that you've had your entire life.
I'll start. Some of these I've noticed you guys mention:
------------------------------------------
-Mental Alertness:
This manifests itself in many ways. ADHD is what I was recently diagnosed with. I have seen at least 2 or 3 others mention Bipolar disorder, which is VERY close to ADHD. I've also heard it described as a "cloudy" feeling which is why I went to the doctor in the 1st place. I recently read that iron does seem to cross into the brain.
-Pain (Underneath the Ribs):
I have had a few sharp pains from time to time coming from the right and left sides just below my rib cage. Sometimes I can feel my liver, but it is enlarged.
-Irritable Bowels:
I have been to the emergency room twice as a child with stomach pain. My stomach has ALWAYS been a problem and remains a problem.
-Low Body Temperature: ???
May just run in my family. My father and I were always a cool 97.4
-Shakiness: ???
My hands have always been shakey. Again, may not be related.
-Hypoglocemic: ???
My body seems to want to give out on me sometimes. Especially if I eat say a donut for breakfast and nothing else. I have noticed that protien helps. Well it did until my hamburgers and steak got taken away!
--------------------------------------------
I'm not trying to be the nerdy kid in class, I was usually the quiet one. It's just that I think with as many of us as there are here with "mental cloudiness" we should be able to get something done or at least help shed some light on the subject. It's all very frustrating for me. Only in the last 2 months have I realised that my flashy temperment and loss in mental function may not be my fault!!!
Now I will start with the main symptoms associated and readily found on the internet. These are copied from the Mayo Clinic's website...
-------------------------------------------
-Arthritis, especially in your hands
-Chronic fatigue
-Loss of sex drive (libido) or impotence
-Lack of normal menstruation (amenorrhea)
-Abdominal pain
-High blood sugar levels
-Low thyroid function (hypothyroidism)
-Abnormal liver function tests, even if no other symptoms are present
Advanced-stage signs and symptoms
In later stages of the disease, you may develop serious conditions such as:
-Cirrhosis a condition marked by irreversible scarring of the liver
-Liver failure
-Liver cancer
-Diabetes
-Congestive heart failure
-Cardiac arrhythmia
-Discolored skin that's bronze or gray in appearance
------------------------------------------
That being said, there are some other symptoms that I've noticed among this group. Please feel free to list anything that you have noticed. This can be in recent days or symptoms that you've had your entire life.
I'll start. Some of these I've noticed you guys mention:
------------------------------------------
-Mental Alertness:
This manifests itself in many ways. ADHD is what I was recently diagnosed with. I have seen at least 2 or 3 others mention Bipolar disorder, which is VERY close to ADHD. I've also heard it described as a "cloudy" feeling which is why I went to the doctor in the 1st place. I recently read that iron does seem to cross into the brain.
-Pain (Underneath the Ribs):
I have had a few sharp pains from time to time coming from the right and left sides just below my rib cage. Sometimes I can feel my liver, but it is enlarged.
-Irritable Bowels:
I have been to the emergency room twice as a child with stomach pain. My stomach has ALWAYS been a problem and remains a problem.
-Low Body Temperature: ???
May just run in my family. My father and I were always a cool 97.4
-Shakiness: ???
My hands have always been shakey. Again, may not be related.
-Hypoglocemic: ???
My body seems to want to give out on me sometimes. Especially if I eat say a donut for breakfast and nothing else. I have noticed that protien helps. Well it did until my hamburgers and steak got taken away!
--------------------------------------------
I'm not trying to be the nerdy kid in class, I was usually the quiet one. It's just that I think with as many of us as there are here with "mental cloudiness" we should be able to get something done or at least help shed some light on the subject. It's all very frustrating for me. Only in the last 2 months have I realised that my flashy temperment and loss in mental function may not be my fault!!!
Great information.
And I did show signs of ADHD at an early age. My 7th grade teacher actually had to keep the blinds closed on a window that I kept staring out of, and true to form, the iron overload would have not been an overload at that time.
I did not know that about genes. My father was at one time a biology teacher so this stuff very much interests me aside from my vested interest.
Thanks guys.
Oh one more thing- What do you guys think is causing the disconnected feeling so many describe? Could it be that iron is in fact crossing the brain barrier?
I don know that my brain seems to have been impaired by the iron. After about the 3rd phleb it was like the cobwebs began to clear up. I had always thought I was just getting dumber due to old age.
Hmm...
For the past couple of years I will start a sentence and not be able to finish it. When I wake up, sometimes I shake like crazy.
Interesting.
Its good to hear other people with similar stories.Oh I am only compound hetero.
Hope everyone is well
In addition, the doctor states that this is most likely the reason my symptoms occurred
Depression: At one point I had thoughts of just ending my life. (I am
greatful that I know now that HH contributes to depression and this
actually helps me deal with depression)
Fatigue
Heart palpitations
Sex Drive is gone!
ABS: I have had this most of my life
My skin hurts a lotall I have to do is lightly touch my skin and it
causes me pain.
Very Dry Skin
Weight gain even with diet and exercise
Early menopause
I've been to the emergency room twice for it. Cramps- yes.