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Haemochromatosis

Also known as Iron Overload

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  • Low ferritin, celiac, and hemochromatosis revealed??

    Ok, so need some advice. Two months ago my ferritin levels were rock bottom, 3 and 2 respectively. my iron  panel ( non fasting) revealed: Total iron: 12  TIBC :413 Saturation: 3 ( see reference ranges below- they're the same) Suspected celiac as a result of this iron deficiency anemia...

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  • Lab results left me confused

    Hello all - I have not yet been diagnosed with hemochromatosis.  I am hoping to get some advice from those who have personal experience with it.  I am a 33 year old female.  I have been having nerve and joint issues in my upper extremities, irregular periods, fatigue, headaches and dizziness...

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  • Alcohol

    My husband has just been diagnosed with hemochromatosis.  I’ve noticed for a while that his alcohol tolerance has lessened.  He is only a social drinker, maybe goes out every couple of weeks but Before he would have a few pints of beer and be fine but now he seems to be getting drunk very...

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  • Should I be tested?

    I have been suffering from chronic fatigue for the past year or so. I have an underactive thyroid which is being treated. I also have low B12 and Vit D. However my iron results from recent bloods were the following: Serum iron 33.3 (5.8-34.5 umol/L) Serum Transferrin 2.53 (2.0-3.6 g/L) TIBC 57.56 (44.8-71.6...

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  • Maybe premature.....

    I have a lot of symptoms of the Haemochromatosis. Recently had a panel done but I only know the ferretin and transferrin saturation values - Ferretin 176 and Trans is 50%. They will retest shortly. By the look of it the saturation is a little high but not mega but Ferretin is normal.....would this even...

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  • Low Haemoglobin

    I have just returned from hospital where I was to have my second venesection, but when the result of the blood test came through, ( while I waited ) I was told my haemoglobin was too low and I would have to come back next week and hope my body had recovered. The haemoglobin reading was 120 and it needed...

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  • Blood tests

    Hi. Newbie here. I recently had some blood tests done. I went to docs complaining of stomach pain like period pains (which I don't have anymore) and constipation. All of the results came back normal except for iron which is 809. I am being retested in 6 weeks. They have said that those levels might...

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  • Carrier with C282Y Gene & High Ferritin

    I have Genetic HH and my children have been tested and don't have both genes.  My daughter who recently had blood tests had a ferritin level of 479 and carries the C282Y gene.  Is it possible that she could have HH.?  She has symptoms that resemble those of HH.     

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  • Waiting for gene test and not sure if I might have H

    Hi,  I’m new here.  I got my blood work done and my test came back Iron 22 Iron bonding capacity unsaturated 18 Iron saturation  0.55 Ferritin 692 (up from 617.  5 months ago). I have a parent that has HH.    Is it possible I have it also?  I have to wait another 5...

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  • Milkthistle

    Does anyone know if there is any benefit from taking milkthistle,worried about liver damage.

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  • Huge drop in ferritin

    Hey guys, I’m glad there is a forum to ask these questions since my doctors aren’t always there!  I was diagnosed a couple of months ago, and was given 4 phlebotomy sessions to do in the last month. My ferritin had previously climbed from 450 to 560 to 630. Then after the 4 phlebotomies I am at...

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  • No treatment?

    I’m increasingly feeling bad. Fatigue, out of breath, can’t think, etc.. my saturation is 88%, Ferritin 98, and TBIC is 219.  I cant find a doctor to treat this. They say it’s not bad and that I should not be having any symptoms with these levels. I’ve been tested positive for hemp. 

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  • Hemochromatosis carrier, what does this mean?

    Hello, I am a 35 year old female. I recently went to the doctor for fatigue and abdominal pain. My labs came back showing my iron at 195 mcg/dl and my saturation at 59%.  The doctor tested me for hemochromatosis, told me I was a carrier and referred me back to my regular physician for monitoring....

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  • Fatigue if B12 below 550?

    After a year of fortnightly venesections my Hb is 136 and my ferritin is about 100(it was 136 a month ago). The fatigue is little,if any,better. I keep reading that you can have fatigue issues if your B12 is below 550.Mine was 294 two years ago,which my GP considers to be all right as it is within range.However,being...

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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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  • HFE Heterozygote and Niacin

    Hi All, I’ve decided to make this post in hopes that it may help someone avoid a complication that I experienced. Background: In 2008 after routine blood work my GP called me in “STAT” because of elevated LFT’s. AST-1538, ALT-831. At the time I was taking Niacin 2000mg/day for high cholesterol for about...

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  • haemoglobin

    Tomorrow should be the day for my weekly venesection, but this afternoon the hospital phoned to say my hb is too low and they will look at a second blood test in three weeks and see if the letting can begin. Can any one tell me what a normal range is? Today hb 1s 114. Will my iron spike because I am...

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  • Back again

    Hi,me again, got comfirmation today,I am 'homozygote CYS282' . I have been looking this up and it just confuses me with different types. Can someone explain this please in lay-mans terms,and the differences aswell please.

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  • Haematology appt in Nov

    Hi All Just received appt to see haematologist next month after being diagnosed with HH in Sept I wondered if they also take blood whilst I am there or is it just to discuss treatment?  Did ask my GP but she wasn’t sure if they blood let whilst I’m there or not

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  • Hemachromatosis H63 D

    Hi.. i was just diagnosed with this as a carrier with high ferritin levels. Does anyone have this and can tell me what to expect? Thank you

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  • venesection in thailand

    Hi all i have just been diagnosed with hemochromatosis  yesterday hospital actually have known for 16 months but did not do a follow up and forgot to inform me in the  heamotology department  of my local uk hospital    anyway im due to fly to thailand traveling in 4 weeks time...

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  • Low Serum Ferritin, Very High Serum Iron ?!?!

    I'm 48 years old and have been vegetarian for 25 years.  After 2 years of mild but persistent stomach pain and an abdominal ultrasound that came out clean, I got extensive blood labs again and found that my Serum Ferritin was low (28, with a normal range of 30-400) but my Serum Iron was very...

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  • new to all this.....

    Hi,not been officially diagnosed but consutant seems pretty sure,my iron levels are 2000,I had first venesection last friday morning and by the afternoon felt awful,I felt drunk and really out of it and unbelievably tired which continued all the following day. Sunday felt quite alot better. is all this...

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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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  • Iron overload

    Hey everyone, newbie here with a few questions. I don't have HH but my ferritin is high. Back in June I was anemic so I received a course of 6 iron infusions. Afterward my ferritin tested at 350. I am female with premature meno. Anyway about a week later, starting in July, I started having steady...

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  • am i the only hh person with skin rash?

    I'm 47, had symptoms since at least last summer, eventually got diagnosed in Jan this year, but can only get to see haematologist in June. Main symptoms fatigue, very itchy rash on neck and lack of sensation on neck skin, depression, joint and muscle pain. It takes a whole week to recover from one...

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  • Ferritin raised by alcohol?

     I have been having venesections for a year and started off 1,000+. I know the amount ferritin goes down reduces as you approach maintenance but it has only gone down by 10 the last few times,15 before that. I went on holiday recently and wondered if the extra alcohol consumption coupled with my...

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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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  • Work

    I have HH and hAve venesection every 3 months but I go in the morning and take the day off work because I feel so tired after and I go straight to bed,my question is work are questioning it,I never said I had it in my interview for fear of nor getting job (I work in a school kitchen)can they sack me...

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  • My friend just died

    Hello, I was recently informed that my dear friend of 50 years just passed away suddenly.  38 years years ago he had a kidney transplant and he has been doing very well with his transplant for the 38 years.  His one transplanted kidney (from his brother) kept his blood work normal all these...

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  • Any help

    I showed my friend my test results and she said my iron levels are far to high, any help?  Tsh 0.02 mIU/L range 0.4-5.0 Free t4 24 pmol/L range 9-19 Urea 2.1 mil/L range 2.5-7.8 Total protein 77g/l range 60-80 Albumin 43g/l range 35-50 Globulin 34g/l range 20-35 Total bilirubin 8umol range 0-22...

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  • Iron blood work......worried

    Hi all. This was my iron blood results Total iron 199 (high) Iron binding 401 Saturation 50% Ferritin 41 Do i have hemochromatosis ? Im only in my early 30s and this is all too much for me to handle 🙁 as i was recently diagnosed with another disease😢

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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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  • What do they class as dangerous ferritin level

    can anybody put some light on this I've had 14 venesections levels started at 739 after 14 venesection my level at 710 the lowest it's went down is to 473 very depressing keeps going up I go every fortnight, when I was there a lady was in and she said she had lost 2 family members to this I would...

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