My intitial sympton was skin bronzing above the ankles , but I wasn't diagnosed for another 5 years. Ferritin level was 1321. By the time I was finally diagnosed I was suffering from severe joint pain and brain fog. The brain fog has lessened but the joint damage is already done and I'll just have to live with it.

I had joint pain, severe bronzing and what some call brain fog, I was in a management position and I had trouble making decisions. My ferritin was 2400+.

At one time (april 2010) my ferritin was at 610 (after an infection), but usually it was around 300+. I had (and still have) ear ringing, brain fog, minor joint pains, and fatigue.

I have an appointment with my doc next thursday and hope to be de-ironed real soon. Hope my symptoms will disappear.

Steph

And oh, my sat% was 67 at that time.

everyone is differerent. i had ferritin of 3600 and sat % of about 90, and that was it. i had no side affects at all, i never know i had been walking around with hh. i only found out during a routine blood panel which showed abnormal liver functions, then the doctors looked further and found hh. now that im "deironed" i feel the same as when i was at 3600

Didn't really have symptoms per se...I was having bad stomach pains thinking it was stress (ulcer)...I went in for a routine blood test after not having one for about 6+ years and found out I have HH. After first 2 phlebotomies pain went away but pain comes back if I get 2 weeks behind. Ferritin initial 1100...not sure now only been a month (4 phlebs).

i had symptoms for years that went misdiagnosed. i had arthritis in my early 20's, had gastral probs most my life and i have had a lovely tan until i got de ironed. now i have none. looks weird after 57 years with the bronze tone. we are all different. i was diagnosed last may and am now on a maint. phlebing (26 phlebs). i still get tired and the arthritis is here to stay. i am an old monkey that is my excuse and i am stickin with it. my levels weren't near as high as some. i was at 850. but i had fatty liver and enlarged liver, and enlarged spleen, that is what got them to lookin into hh. found out after my ma died that she had it and knew it and never told my sis and i.... oh well.

I was diagnosed 2 months ago at 36. My symptoms have been body aches and joint pain, with noted memory and concentration problems. I have also struggled making decisions. Ferritn was 530 and sat % was 37%.

I'm 42 and I've had problems with fatigue, depression and concentration since early 20s. First indication of HH was through a genetic test (23andMe) about 1 1/2 years ago. Shortly after that asked for an iron blood test but not knowing about the different tests they only tested serum iron, and my serum iron was (and in subsequent test continues to be) in the normal range. There was also indication of possible liver problem with ALT slightly high but not high enough that the doctor was very concerned. Only had the full set of blood tests early this month when TS% was 66, Ferritin 550. A followup test last week to rule out other causes found TS% 53 and Ferritin 500. In the last six months I've had some tenderness on my right side near the edge of my rib cage which the doctor thinks is probably my liver. Will be getting a liver scan in July. I've also had a persistent rash on my lower legs off and on for the last few years which gets worse during hot weather, and which has yet to be explained.

I was diagnosed with a ferritin of 1300 and had no symptoms. After 28 Phlebs I am at a ferritin of 500 and luckily still no symptoms

@ Michael...did your doc tell you that you may never have symptoms?

My Hemotolgoist comments have been since we caught it before any damage was done, this is just preventative medicine so you do not have any problems later in life. When I go back and look at the the lab work he did the liver, kidney indicators were all normal. I think he will continue to test for AFP ( alpha feta protein), which is an early marker for liver cancer because I have had HH and an elevated ferritin level. But so far all the numbers have been good.

Actually my diet and lifestyle changes have certainly made me a healthier person. I gave up all alcohol consumption and bicycle to work 10 miles each way.

I had a whole host of symptoms. Severe joint pain and extreme fatigue made me go see my Doctor. (I really felt like I was being poisoned). I have back problems, so she assumed that was the cause of my joint pain and sent me to physical therapy, which helped not at all. After seeing 4 specialists I was diagnose with HH. In the mean time I developed brain fog, balance problems (tripping over nothing), pretty bad hair loss, weight loss, gray skin, frequent infections, among other things. Iron levels were 587 before treatment. After only 4 phlebotomies I am down to 36 and on maintenance.

@ Heidi43...how do you feel now?