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Haemochromatosis

Also known as Iron Overload

All discussions in this group

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  • Anyone got a good supplement they use to reduce unbound iron?

    My ferritin is coming down nicely,166 now from nearly 1,500  eleven months ago.My TS is still a little high at 59%,although it was as high as 90%.I was hoping it would be below 50% by now.     Some people swear by iP6 and lactoferrin to bind iron.Does anyone recommend these or something...

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  • High transferrin saturation% but normal ferritin

    I have been feeling poorly for a few years but able to deal with it (abdominal pain, nausea), but I really became concerned about a year and a half ago when I became so fatigued and lost all stamina.  I'm mid 40's and was used to exercising 5 times a week (an hour of stationary bike plus...

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  • Newly Diagnosed

    Hi all  Just found out I have hereditary hemachromatosis.  I'm clueless I have loads of other medical problems going on but just wondered does anyone else suffer from fatigue caused by the hemachromatosis? Thanks in advance  Sally 

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  • Ferritin going down very slowly.Alcohol?

    Since around the 400 mark my ferritin has been going down very slowly. 14/3/17,13th venesection,SF 408,TS 88%, 26/4/17,16th v/s,SF 327,TS 45%, 19/6/17,20th v/s,SF 305 TS 52%.        At my last appointment in March the assistant gastro told me I could drink up to 21 units of alcohol...

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  • Joint Pain

    Hi folks,              I started my venesections a couple months ago now(think I've had ~10) and I've noticed a dull ache in my joints for a couple days afterwards. I know joint pain is a symptom of haemochromatosis but I never had that. As i said this only...

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  • Ectopic heartbeat

    Hi, Having just been diagnosed with type 1 Hereditary Haemochromatosis, I'm wondering if it could be the reason I have the problem with my heart, I've got a heart monitor fitted and it's checked every 6 months, but no-one seems to know what's wrong. Has anyone else experienced anything...

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  • Omeprazole

    Does anyone take Omeprazole to ease symptoms such as digestive problems? I have had a chronic cough for around 18 months, and have been occasionaly coughing up blood, so my Dr. put me on it. The cough seems to have eased but I am left feeling a little breathless and have a dry throat.

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  • Normal live function with cirrhosis

    I've been told that I have cirrhosis of the liver but that my liver and all other organs are functioning normally.  I do not have any symptoms of any kind. It was suspected I had cancer, but that has been ruled out.  My hematologist has referred me back to my gastroenterologist for further...

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  • mixed results on old test. tired, complexion is weird orange

    Hey there, had an iron test done 9 years ago.  results: 133 serum ferritin 344 tbic 180 uibc 164 serum iron (just slightly outside reference range) 48% iron saturation I had a flinstone vitamin 2 days before the test.  It had iron in it, just whatever is 100%DV for kids I guess.  seems...

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  • Awaiting official diagnosis, what do I eat??

    I recently had routine bloods done which showed my iron and ferratin levels across the board drastically point towards haemochromatosis. My bloods a year ago we're completely normal, but my most recent panel had my GP really confused and worried. He's advised getting a repeat panel and genetic...

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  • hemochromatosis-feeling drunk/drugged?

    Hi everyone, I'm a 23 year old female. I was diagnosed with hemochromatosis at the beginning of December 2013, de-ironed by beginning of January 2014. Even though I have been de-ironed, I have still been experiencing a symptom I can only describe as feeling drunk or drugged at times. It's...

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  • Newbie high iron saturation levels need some advice ☺

    Hi my name's Allison and im 33yrs old for the last 5 or so years my iron saturation levels have been slowly going higher and higher , my old doctor tested me for haemochromatosis and it came back as im only a carrier. From everything that ive read it says i shouldn't have high irin levels yet...

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  • Hemochromatosis and Cirrhosis stage 4

    I am a 34 year old male who was diaginosed with hemochromatosis  only after a liver biopsy because i only have one of the genetic markers. When diaginosed my ferratin was over 5000. Shortly after i was diaginosed with stage 4 cirrhosis of the liver. Is anyone out there in the same boat as me.

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  • Haemachromatosis

    Does anyone who suffers with Haemachromatosis have low immune system and are always coming down with things?

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  • Migraines

    My fiancé was diagnosed with hereditary hemochromatosis at 20 yrs old. Prior to that he had been misdiagnosed with everything under the sun except HH. He's now 57. He's had migraines all his life starting as a child. My question is - is there a correlation between migraines and hemochromatosis?...

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  • Do I have haemochromotosis??

    Hi there, my ferritin levels are 516 and saturation only 16. I am tired all the time and my knees are sore on inside of knees. My great aunt is a carrier of haemochromotosis. What are everyone else's symtoms?

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  • Newby!

    Hi, I have just been diagnosed with Type 1 Hereditary Haemochromatosis and on the Path Report it stated I am HFE type YYHH position 282 YY ( homozygous) Position 63   HH (wild type) Serum ferritin 667 My doctor is reffering me to a liver specialist, so I just wait and see!

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  • Still waiting results of genetic testing

    It is it is nearly 6 week since I had my genetic test and I'm still waiting for the result haematologist said if the result is negative GP is to ignore the iron overload and there is no need to monitor my iron levels in the future they do not seem to be interested to find the cause of the iron levels...

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  • Iron avidity

    I have classic hemochromatosis. Been doing phlebotomy a for about 12 years and recently switched gastro doctors. I believe I was overbled. My ferritin is 50 - hemadacrit is 44 , but my iron sat is 98%. Prior to last phlebotomy my old Doctor bleed my ferritin down to 11. I feel like my doctor will...

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  • Not sure what to do.

    I am a 56yo healthy enough male. I went to dr for erectile dysfunction problem and he took blood tests which showed high serum ferritin level 1114 and transferrin saturation 28% . My other bloods came back normal. Was tested positive for gene H63D haemochrosis and have a high Urate level of .44 which...

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  • What are the chances of hemochromatosis?

    Hi all... I live in Canada so the measurement may be different here for iron, TIBC and saturation index. in 2011 my test results were as follows : iron  *32 TIBC 50 saturation index *0.64 For the last ten plus years I have been going to the doctor with varying symptoms including hair loss, extreme...

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  • C282y and h63d genes

    hi all, I was diagnosed with the c282y and h63d gene for haemochromatosis. can someone confirm for me without my parents having their own tests done yet... have I got one of the genes from my mother and one from my father making them at the very least carriers of haemochromatosis. is it vital...

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  • High iron / Hemochromatosis

    Hi.  Could anyone help on the below results please? I'm at my wits end with my drs. I am still awaiting my Gene results to find out if I have Hemochromatosis or not. I know I have high ferritin levels but how high are they? I also know that my usual iron levels are normal. thanks in...

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  • Haemachromatosis

    Hello everyone and glad to find this site.  My husband was diagnosed with Haemachromatosis back in 2014 he only found this out last week June 2017.  He never went back to the doctor and the doctor never followed it up.  Now looking a previous blood reports we see he was diagnosed back...

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  • What to expect from first venesection?

    Hi, I saw my consultant for the first time since being diagnosed today, so I'm pretty excited to get going with treatment. In comparison to most people on this forum my levels are pretty low with ferritin only at 310 but at the same time I'm only 19 and dealing with this all by myself. What...

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  • Me again!

    Hi boyz'n'gurlz, My wee sister has now been diagnosed(?) with haemochromatosis. I had a phone call with her earlier and she said she was "homozygous" and a carrier. To the best of my knowledge this isn't possible as a carrier is  always heterozygous. Is this correct?

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  • Venesections not working

    Hi I've been following this forum for a while now but this is my first time posting. I was diagnosed with HH 4 months ago and my level was 1270. I started fortnightly venesections and got my levels checked again after 2 - my level had gone up to 1290! My consultant told me not to worry as this...

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  • Possible hemochromatosis?

    I've had elevated liver enzymes for about 6 months and my doc ordered a liver biopsy during a gallbladder surgery. The results showed significant iron deposits in my liver. My recent labs were Iron & TIBC 327 iron serum 120 Iron sat 37% Ferritin 272 ng/ml Is this possibly hereditary hemochromatosis...

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  • Dental problems

    Since joining this forum I've found out so much I've always put my symptoms down to my other illnesses But after talking to a lot of HH sufferes I now realise it's due to this illness It's good that we can help each other ESP with symptoms that a lot of us didn't realise was due...

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