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Haemochromatosis

Also known as Iron Overload

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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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • 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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  • Is it possible I have Haemochromatosis?

    Hi all I would appreciate some advice. I've had health problems for about 3 years now. The primarily issue has been fatigue which is quite extreme at times. I've had to drastically change my lifestyle due to this and nothing seems to help. I've been tested for all sorts of things which have...

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  • Do I need to worry or is it normal? Please help

    Age 27 Hereditary c282y/h63d  My hemoglobin has been going up and down since o started my phlebotomy 6 weeks ago. My last one was last Friday and my blood is no longer red but brown and started to clot the tube. My hemoglobin level was the highest it's been since I found out about the disorder....

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  • Blood pressre

    Ok everybody, I hate to be that idiot from Ohio, my blood pressure drops about a week after phlebotomy.  I have high bp thanks to my parents, however controlled with diet and exercise.  My problem is that about a week after phlebotomy, my pressure is 112/80.  I'm 6'2 214 lbs. when...

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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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  • My second Ven.

    Yesterday I had my second Venesection, 2 pints of water before I arrived and a good friend by my side. Determined to just get it done and kick this needle phobia into touch ... its not a lot of use in my/our situation. First my numbers were higher than the first one 😱 second my veins that were...

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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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  • Hemochromatosis-High Iron-Low Ferritin-Low hemoglobin

    My mom was diagnosed with Hemochromatosis about a year and a half ago. She was having regular phlebotomies which lowered her iron levels and made her feel much better and her mind less cloudy. Now her hemoglobin Is too low for them to continue with phlebotomies. Her mind is getting worse and she is feeling...

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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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  • 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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  • Is HH the cause of my symptoms or something else.

    I was diagnosed with hereditary hemochromatosis about 6 years ago and was de-ironed shortly afterwards. My initial iron count was 999, but is now down to ~100. I am a 39 yr old male.  I suffer with a number of symptoms the vary from annoying to extremely debilitating.Over the last 5 years or so...

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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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