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Haemochromatosis

Also known as Iron Overload

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  • Genetic Haemochromatosis

    Been diagnosed with GH from an Irish background mum and dad  I need to understand what ferretin levels irons levels are and what questions to ask had first venesection almost fainted  was told not to eat spinach but all the websites say it prevents absorption  advice please …

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  • A question for those diagnosed with iron overload..

    Hi everyone. I have not been diagnosed with hemochromatosis but I recently had some blood work done and my results were as follows: Serum Iron 346  (Range 37-145) TIBC 363 (Range 250-450) Ferritin 29 (Range 13-150) Have any of you had hemochromatosis and lower end ferritin levels? 

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  • Problems with IV saline

    i have Haemochromatosis and have just started venesection treatment, to be every three weeks. The first one was scary, I felt I was going to faint when only about 100 ml had been taken....then that vein gave up, so the other arm was used. I was fine until the pint had been taken, when I felt really …

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  • Could I have Haemochromatosis ????

    Aunties on both mum and dad side of the family have Haemochromatosis. They are both from the West of Ireland.  I was born and raised in London. Last night a cousin said we should all get tested. When I look at the symptoms I have most of the, with the exception of irregular periods. BUT .. …

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  • CONFUSED

    Hi Fellow travellers. Since my last venesection 3 weeks ago my ferritin level dropped from 218 to 179 .A drop of 49!! But my iron went up from 25 to 32??Saturation from 61% to 79%.Transferrin 1.81 from 1.84.  With such a big ferritin drop  why was there no meaningful improvement on …

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  • Low-normal Ferritin but High Serum and Saturation

    Hello, I've been trying to figure out the nature of my imbalance, but doctors don't seem interested because my ferritin has been in the high normal, to even low normal range. I had high serum iron (176) and high saturation (56%) on the last test, but low (but normal for me) ferritin of 29.&# …

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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 …

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  • Help

    I have to much iron my doctor told me to take. Vitamin D3 5000 a day it is making me really tired what should I do

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  • Reducing TS% in maintenance

    My TS shot up to 73% when I began maintenance with my ferritin at 51 on 1st March. My latest blood test shows TS at 74% and SF at 50. I understand that as ferritin rises the TS is likely to come down. However, there has been little movement in the SF for 12 weeks. I was wondering whether to get …

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  • Newly diagnosed HH with C282y

    Hi all...I am very scared. I do not know how long I have had this since my last dr was an idiot. I have elevated liver enzymes but all she wanted to know was how much I drank...I had quit 4 yrs prior. She never looked into it further. Fast forward to 2 months ago my new dr didn't like my levels …

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  • How did you get the tests you need?

    Hi, Thanks for allowing me to join. I'm 64 years old. I've been struggling with joint pain, low energy, etc. for the past five years. . I've seen at least a half dozen doctors and probably closer to a dozen.  One of them diagnosed fatty liver disease. I'm not excessively …

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  • Symptoms come and go

    Hi I’m new to here, and just been diagnosed  My question is that my symptoms come and go 1 good week and then a few days of being exhausted , every limb and joint hurts, bowel movement is off and on muscle cramps etc etc  Does anyone else have symptoms that come and go, I’m confused .

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  • Just Diagnosed.....need advice

    My 17 year old daughter was just diagnosed with hemochromatosis & has homozygous gene mutation. She has been feeling unwell for a year now with digestive issues, extreme abdominal pain & nausea. Our previous doctors just kept telling us it was IBS and recommended she reduce stress and go to …

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  • second opinion

    Starting to think i may need a second opinion, my hematologist is very young and may not be very well experienced in my condition. I asked her about my levels going back up after 6 phlebs and she said no its NOT the liver flushing out and now wants me to go 2 times a weeks for phlebs. she said …

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  • Low ferritin, elevated Tsat

    Hi Everyone, I'm new to this list and have found the discussions I've read through very helpful. I was diagnosed with hemochromatosis two years ago. I have had phlebotomies and recently my ferritin is low but my Tsat is elevated. I just moved and I have a new hematologist, and he doesn' …

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  • Confusion and fog though in maitenence.

    Diagnosis: Haemochromatosis with homozygosity for HFE gene. Diagnosed June 2017 I had weekly venesections until January 28th 2018 When I was told I was in maintenance. Feb to April I was joint sore and in quite a lot of discomfort. The Rhumatologist thought it was inkeeping with GH arthralgia. As …

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  • Effects of haemochromatosis on brain?

    Hi everyone, first post... My husband has hereditary haemochromatosis. He is 47 and was diagnosed a couple of years ago. Weekly phlebotomies brough his ferratin levels down (from just under 4000) to normal range, and there has been no apparent damage to liver etc. He suffers with total lethargy, …

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  • Recently diagnosed with 2 H63D genes with raised TSH

    Hi, I have been recently diagnosed with GH with 2 copies of H63D, I have a of ferritin of 450 but after a Ferriscan showing slight loading my consultant wants to retest in Feb next year & if my level is over 500 will do another scan then decide on venesection, I have also had an under active …

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  • Just diagnosed - confused about two subsequent ferritin results

    Hi all. I was diagnosed about two weeks ago at age 37 - homozygous for c282y. My first blood results came back at 1,732 and 91%. Obviously high and I was buckling in for the long haul of blood draws. I also quit drinking immediately (heavy-ish drinker at 3-4 per day) and stopped eating red meat. …

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  • Ferritin levels dropping too fast?

    Hi all, Newbie here, found out I was homozygous H63D in January with a ferritin level at 483.  I have since given blood twice in 5 months and my ferritin has dropped to 63.  I was told that my ferritin levels should drop by about 30 each time so I was expecting to be at about 420. Should …

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  • brain fog

    hey guys, so I just had phleb #6. Next week I have my levels rechecked. I'm doing ok. But I have a question, does anyone else have some brain fog while driving? I have had this for a couple years and no one has ever been able to figure out why...I thought it was due to my needing glasses.... …

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  • Just diagnosed Hemochromotosis

    Hey everyone, I'm  26 years old and was just diagnosed with Hemochromatosis... I'm just looking to see if anyone has any information regarding this blood disorder.. its apparently pretty rare as per my doctor especially at my age. I go for therapeutic phlebotomy every week currently …

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  • Venesection

    Hello all, I got my diagnosis last week of HH .  I just got my list to start my venesections. My first starts tomorrow then every week . I’m really Nervous to be honest. Haven’t even given blood before 😢 Do they leave the line in or take it out every time? Does it hurt?  Any tips …

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  • Symptoms before diagnosis

    Hello. I am 40 years old and I have suffered from chronic fatigue and depression for about 20 years.  It all started around the time I had a serious concussion. It was chalked about to post concussion syndrome but it never went away. I was put on antidepressants which did help the depression …

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  • Advice please

    I have only recently been diagnosed with HH.... ferritin 697... started vensection with 2 units a week x 3 weeks... but then haeomagloblin dropped to under 10..... I feel completely wiped out... find hard to muster any get up & go..exercise is so difficult.... would so appreciate any advice... …

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  • Can anyone translate this, my GP doesnt even understand it.

    After receiving the results of a routine blood test my GP discovered (after several more tests) I have high ferritin levels and so sent bloods to haematology and they sent back the attached letter.  I would be very grateful of any help explaining what it means. Even my GP and his colleagues …

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  • Hairloss with hh

    I've started noticing more of my hair coming out from my head. I run my fingers through it and lots comes out. Anyone else noticed hairloss with hh?

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  • Current diet recommendations for hemochromatosis

    Hemochromatosis diet; This is the current medical opinion on restriction iron in your diet for hemochromatosis. “Although dietary iron is the source of excess iron in hemochromatosis, a decrease in dietary iron has not been shown to decrease iron stores in hemochromatosis. All food groups …

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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 …

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  • Liver problems after initial all clear

    We all know the routine whereby we have an initial ultrasound,etc to see if we have any liver damage due to iron. Mine was thankfully okay. I was thinking that I’m not aware of anyone who has initially been okay having liver problems later on. As most of us have annual ultrasounds I assume that …

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  • Managing symptoms, a job and young children

    i’m looking for some reassurance here.... I was diagnosed two months ago after the usual symptoms and starting VX at the end of June. My symptoms have been getting worse (esp tiredness, joint pain and irritability). I have a demanding job (university lecturer) and regularly end up doing 10 hour …

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  • High Transferrin saturation

    Hi all, new here. I had an unrelated private blood test recently and the transferrin saturation was 63.1%. I am pre-menopause. I saw my GP this evening who told me transferrin saturation on its own was meaningless but I had to really push to get him to agree to test ferritin which I will have done …

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  • My Haemochromatosis diagnosis is kind of a relief

    I have literally just been diagnosed. Not started treatment yet but have been told what to expect. My Fibroscan today was normal, I have an Ultrasound scan next week. The high Iron levels were picked up through routine blood tests i'm required to have because of medication I take. For quite a …

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