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.
Had a blood test in April and results were Iron level 152 and a ferritin 557 with a saturation 45%.
You know that feeling we all get when we know something is not right with our bodies but the docs can't find anything?
I basically slept last summer away and now have pain in my heel which the foot doctor told me I have planters and possibly heel spurs.
Started getting panic attacks and was treated for depression which i am a pretty happy guy considering the fatigue and heel pain.
I noticed something weird that I could not figure out until recently. When I slightly rub my index finger over my left two knuckles I feel a burning sensation.
I had another blood test last Thursday and going back to the doctor Wednesday to review the results.
I have convinced myself I have HH and stopped eating anything with iron. No alcohol, red meat etc...
Ordered a Hemochromatosis diet book and am actively searching for a Hematologist.
I also plan on giving blood at some blood drives until I can start phlybotomy treatments.
Is a colon flush a good idea along with Milk thistle?
I will report back after I go through the diagnosis process but what really freaks me out is if I am diagnosed, how long have I had this and how much damage was done? I know things I shouldn't think of..
No one in my family has ever heard of this and just tell me I am 51 years old now so yea, things start hurting.
Frustrated and anxious, hope this is just a fatty liver
thanks for any input
You know that feeling we all get when we know something is not right with our bodies but the docs can't find anything?
I basically slept last summer away and now have pain in my heel which the foot doctor told me I have planters and possibly heel spurs.
Started getting panic attacks and was treated for depression which i am a pretty happy guy considering the fatigue and heel pain.
I noticed something weird that I could not figure out until recently. When I slightly rub my index finger over my left two knuckles I feel a burning sensation.
I had another blood test last Thursday and going back to the doctor Wednesday to review the results.
I have convinced myself I have HH and stopped eating anything with iron. No alcohol, red meat etc...
Ordered a Hemochromatosis diet book and am actively searching for a Hematologist.
I also plan on giving blood at some blood drives until I can start phlybotomy treatments.
Is a colon flush a good idea along with Milk thistle?
I will report back after I go through the diagnosis process but what really freaks me out is if I am diagnosed, how long have I had this and how much damage was done? I know things I shouldn't think of..
No one in my family has ever heard of this and just tell me I am 51 years old now so yea, things start hurting.
Frustrated and anxious, hope this is just a fatty liver
thanks for any input
It is frustrating trying to explain this to people who dont know about HH, and even doctors.
I know teh feeling people just say pull yourself together its just your age.
However HH is very real and you are at the right age for the tipping point of its effects, as by the time you reach your 50's the iron will have built up to a level that makes itself known.
I had the same sort of things as you and my doctors said that the burning feelings that I was getting were probably nerve damage, initially they said that i needed an iron supplement for teh fatigue!!! after my diagnosis the doctor said that the iron that they gave me for the fatigue could have killed me.... I was diagnosed after having a chest infection for three months that totaly floored me I dont remember my birthday or Christmas that year, and the it was my continued fatigue after I had got rid of the infection that eventully led to my diagnosis.
It is treatable and quite easily, you need to ask to see a Heamatolgist befofe you start doing anything too drastic.
I dont think a colon flush will help, I say that as I have had several Colon flushes for colonoscopy's and they didnt make me feel any better, however Milk Thistle is good for your liver function and I take it each day as well as magnesium and zinc.
The Zinc is a help to the immune system, as people with HH are more susceptible to illnesses and cancers as they thrive in an Iron Rich environment.
HH is a genetic thing and if you are diagnosed with it you will have had it since birth, so if you are diagnosed you will need to get your family members checked out.
Do some searcheds on this site and online and you will find a wealth of info regarding HH, however many doctors still dont know or understand HH.
After my diagnosis looking back at my medical history so many things were or are relatable to HH.
I was diagnosed wih IBS and Astma many years ago and had issues with both for a long while, since dianosis and treatment the IBS has completely gone and the I have been told that I dont have Astma.
Please feel free to ask this forum any questions of worries as so many good people on here will help you.
Take care and let us know how you get on.
Regards
Steve
I was also told to take iron supplements which I did for awhile but my stomach would hurt afterwards so I quit them.
I ordered the Hemochromatosis cookbook to help me with food shopping and cooking.
I started D3 supplements which has really boosted my energy and will look into magnesium and zinc. I just recently discovered that any supplements that have magnesium stearate in them should be avoided. The stearate is a coating that help speed up production for the company and will nullify any absorption of all supplements.
Again thanks for the reply all info is helpful at this point
How did you get on with your blood results?
Not everyone with high serum ferritin levels has HH (33%-43% according to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657669/). However, if you have HH you need to have treatment as soon as possible to reduce your serum ferritin and transferrin saturation levels (although your transferrin saturation is not as high as some people's on this forum when they were diagnosed).
You can't avoid eating iron as it is in most food but there are ways of reducing the amount that you consume and your HH diet book should be of help with this.
Christine