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Haemochromatosis

Also known as Iron Overload

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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 the...

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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 I...

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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 the...

    Posted
  • 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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  • High Ferritin

    Hi Everyone, I'm new here and joined in an effort to get some info regarding my high ferritin. Recent blood work shows my ferritin level is at 379 ug/L however nothing else was flagged or out of the ordinary. Should I be concerned as its only 79 ug/L over? From what I read, unfortunately ppl...

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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. Now...

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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 that...

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  • Iron levels after donating

    Hi all, I have recently learned my iron level results after giving blood 3 times - 3 x 500mls of blood. So my highest levels were ferritin 415 and trans sat 66% Now my levels are ferritin 84 and trans sat 24%. This was over 3 months. I'm so happy and very surprised it has worked for me so fast!...

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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 there...

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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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  • Is there a link between HH and early onset dementia?

    I've was diagnosed with HH this week (after months of investigations, genetic testing came positive for C282Y). I'm waiting to start treatment, which could take a couple more months.  I'm still trying to get my head around it, which is not easy as my head feels like it's in a permanent...

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  • 1st venesection

    Hi John, Thanks for the advice.  I’ve just had my first venesection & I have to say it wasn’t as bad as I was expecting. Although I did faint.  My nurse was amazing & the cup of tea even more so. Think I can stop worrying about them now 😀  Just waiting for my abdo &...

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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, lack...

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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 and...

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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 a...

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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...go...

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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 contain...

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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 working...

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  • Newly diagnosed HH

    Hi everyone.  I unfortunately finally got my diagnosis of HH this morning even though I’d convinced myself I didn’t have it. Now... I’m feeling very alone, worried & extremely over whelmed. I feel I have so many questions running through my head. Anyone else felt like this at diagnosis?

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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 are...

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  • Hairloss with hh

    Does anyone else have hairloss with hh? I've noticed lots of my hair coming out. Much more than usual.

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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't...

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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 later...

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  • Hemochromatosis and anemic

    I was diagnosed with inherited hemochromatosis and close to being anemic.My dr said he could not take blood for the hemochromatosis because it would cause me to  be anemic and may not come back up.So guess I’m screwed.I don’t understand how can that be.Also I have high calcium and low on B12.

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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 while...

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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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  • Ferritin did not improve after phlebotomy

    Hi, my doctor likes to keep my ferritin at 30 it went up to 35.4 in April so on May 10 I got a phlebotomy (maybe I waited too long and my ferritin could have been higher when I got the phlebotomy then on April 19 when I saw the results).  Anyway I got my blood retested 5 days after and my ferritin...

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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 some...

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  • Have I got HH

    Does anyone know what this means please? Position 282: YY - Mutation  Position    63: HH - Wild Type Do I have HH or not? 

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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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  • Low ferritin

    Hello my ferritin level is 77 ug/L is this low as if it gets too low ill need a ferritin level .

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  • Genetic tests

    Good evening everyone. Does anyone know what a positive genetic test comes back like to confirm HH Many thanks

    Posted
  • Apheresis Blood Draw vs Whole Blood Draw

    I have been a long time hemochromatosis sufferer and have always been treated by phlebotomy  --  one unit every two months. I read about a procedure called apheresis which is also a phlebotomy but it only uses the plasma A centrifuge machine returns the platelets and whole blood cells to your...

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  • Blood test results

    I discovered my ferritin result was high when having generic testing.     Given my mother has Haemochromatosis in her family my gp decided to test me and these are my results: serum transferrin 1.71 iron saturation 66.3% serum iron 28.5 ferritin 351 I am awaiting the genetic test.  I’m...

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