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Haemochromatosis

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  • jhnygeo436 1

    Vitamin C & Vitamin A

    Is there any safe way to take these two vitamins in any form so as not to effect Iron have had hemochromotosis for 15 years and have not taking these two may need them for health reasons !

    1 reply 0 votes Last reply
  • brenda34426 2

    Hh

    Genetic testing shows a Hh (big H little h) result and the doctor says I am a therefore a 'carrier'. I have to be 'bled' at intervals, to reduce my ferritin levels. Anyone have any info or advice for Hh people ? Should my adult children be genetically tested? I add this Hh tag to having Hashimoto'

    19 replies 0 votes Last reply
  • youngatheart1 5

    Iron levels dropping without treatment

    Hi, I do not have really bad iron levels, April 2016 they were 301, then down to 253 in January this year,  now April 3 months on they are down to 197.6.  I should be pleased but without any treatment why would this happen.  My inital panic is that I am bleeding internally as the reason for tests

    0 replies 0 votes Posted
  • M1954 3

    Hemochromotosis

    I have had hemochromotosis since 1998 controlled,  my dr. does not let my ferritin go over 30  My concern is my ferritin on 3/07/2017 was 26 as of 04/21/2017 it is 88.  Why would it jump so much.  i'm getting a phelebotomy tomorrow afternoon.  

    15 replies 0 votes Last reply
  • anne06326 1

    gaining weight

    my sister is waiting to go on the transplant list,but has been informed she must excerise more and gain weight which is hard as with loss of appetite her meal portions have been a lot have now after 6 months of being diganosed brought in a dietician in on things(far too late in my opinion)...

    5 replies 0 votes Last reply
  • lisa96705 2

    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 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

    13 replies 0 votes Last reply
  • marcia9999 2

    Not coping with fatigue and GH

    Hi I'm new to this :-) I have suffered from depression anxiety and psoriasis and bowel problems since my early 20s. In the last 5 years I've been diagnosed with ibs then psoratic arthritis which I was prescribed methatrexate and fybromyalgia which I had a change of prescription to duloxetine.

    11 replies 0 votes Last reply
  • lisa96705 2

    Haemochromatosis and saturation levels

    Hi. Found out I am compound heterozygous and have the c282y and h63d. I have extreme tiredness and sore joints especially so in my hands and feet. I have been referred for venesection and am having the second treatment confusion is that my iron levels are 117 but serum saturation is 85

    4 replies 0 votes Last reply
  • jillybeanwgc 1

    hemochromatosis

    Hi Spoke to the doctor the other day which they informed me my iron blood levels were high. Which she said it was hemochromatosis and that she was passing me on to a blood specalist. Which has left me a bit worried and what I should be doing in the mean time. I have noticed a few

    2 replies 0 votes Last reply
  • lisa35952 1

    Hemochromatosis and turmeric

    I have found conflicting information about the effects of turmeric on HC. I started taking it and my numbers increased. I have a high count, near 5000 and after two months it dropped by 1000. Unfortunately, two months later after using turmeric daily, numbers increase by 100. Anyone have an

    8 replies 0 votes Last reply
  • lu80UK 1

    Living with it!

    Hi all, I have a bit of a long winded story, but would love any thoughts or inputs that anyone has….. I am a 32 year old female. I was diagnosed last december with Hemochromotosis (C282Y) with a ferritin level of 1400. My mother is the same, as is my maternal uncle, and my father and sister are

    5 replies 1 vote Last reply
  • lisa96705 2

    Serum saturation

    Hi all, been suffering with extreme tiredness and joint pain in feet and hands especially. Finally saw the consultant on Thursday who said I needed to start venesection the following Tuesday for a month then repeat blood tests. My confusion is that my iron levels are 117 but serum saturation is 85

    1 reply 0 votes Last reply
  • peekay 2

    Testing Times

    Hi folks To cut a long story short as I'm sure it's similar to lots already said. I had a dose of the flu early Nov 2016 and never quite shook it off(constant lethargy, sleeping for an army). In Feb I took myself to the doctor to find out why and tests showed a ferretin level of 2,631. This has

    14 replies 0 votes Last reply
  • MCC1 1

    Confused and looking for advise!

    Hi all,  I am looking for some help and answers!6 My TIBC, UIBC, and iron serum levels have been high-and steadily rising-for at least the past 8 years. Everytime I have asked my doctor (who is a wonderful internist and usually right about things) about this she has said it's nothing to worry about

    4 replies 0 votes Last reply
  • chris41840 3
  • 94707 1

    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 always

    45 replies 0 votes Last reply
  • famof10 2

    Trying to help my husband with poss haemochromatosis

    Hi everyone, I was hoping someone could offer advice. My hubby is 40 & has been long suffering from many of the awful symptoms you all have been having. Earlier in year his ferritin was mid 300's BUT his Rheumatoid Factor was high at 21. A few months later it was still high at 20. His doc said not

    6 replies 1 vote Last reply
  • jennifer 17312 1

    Could I have hemochromatosis ?

    Hello, I am 39 yrs old, healthy, active mom of 5. I am a nurse and enjoy reading and photography. My youngest boy was conceived in March 2015, I have been exclusively breastfeeding since. With that said no period for 20 mths. I started suffering from sciatica and left joint pain, specifically my

    5 replies 0 votes Last reply
  • lillian67415 2

    Confused as to know what to do?

    Hello, I have Haemochromatosis/Hetrozygeous and live in Australia. I am a 55 year old female.  I had a hysterectomy when I was 26 years old for pain. I have called the helplines here but they don't seem to be able to supply much information.  Because of work it is very difficult to see a

    10 replies 0 votes Last reply
  • jan93765 2

    Ferritin, Hemoglobin and Phlebotomy Effects

    I'm sure the answer to my question is already in the existing discussion forums, but I am a new member and trying to weed through the process.  After one year, two liver biopsies, three doctors, a CT and over a dozen labs, I was finally diagnosed with HH about a month ago.  My third phlebotomy was yesterday,...

    26 replies 0 votes Last reply
  • chris41840 3

    8 weeks and 8 phlebotomies

    Just had 8 phlebotomies and my ferritin went from 1887 to 778. I also found out I have the C2a2y gene. They are having me comtinue coming in weekly for the next 8 weeks before testing again.

    17 replies 0 votes Last reply
  • marie13049 3

    Ferrintin 501 transferrin saturation 45%

    My ferrintin is 501 that's the highest has been.  Saturation is 45%.  Three months ago ferrintin was slightly lower but saturation was 50%.  Iron studies came back normal. GP told me she will refer me if the levels are high.  She does not seem concern and will not refer me shall I press for a

    7 replies 0 votes Last reply
  • josie77 2
  • eric89660 3

    Ferritin down (a bit) but TS% up

    I've looked before posting but I can't find much about got my latest results today.8 weeks and 4 treatments ago they were: SF 486,TS 65%.Today SF 408,TS 86%.I haven't had any infections that I know of and I know that the amount you drop goes down when you get can anyone account

    3 replies 0 votes Last reply
  • ellen23311 2

    Is this normal?

    Hi, I'm 18 year old female and I've been diagnosed with haemochromatosis after on going tests since an illness in early 2014 made me lose 2 stone and become seriously exhausted and incapable of doing much. My iron levels were always high and always ignored, I had to push for the genetic test as I wasn'

    15 replies 0 votes Last reply
  • angela28253 2
  • Huggilynn 1

    20 and Hemochromatosis

    Hi. I do not have hemochromatosis. I have one copy of the c282y gene. Unfortunately my son has two copies of the c282y gene. He is 20 years old and by some miracle a psychiatrist thought to have him tested for iron levels when his ADHD medicine stopped working. The geneticist told us that we are

    9 replies 0 votes Last reply
  • jessica 56751 1
  • george48258 2

    Are these numbers that far out of line?

    Went to ER last week, told had hepatic encephalopathy. Went home and from looking at ER diagnosis and looking up hepatic encephalopathy i found out i had cirrhosis! Went to a new personal care physician the next day and she is sending me to a gastro dr next week. She ordered some iron test

    9 replies 0 votes Last reply
  • chris41840 3

    Ferritin numbers down, up, down.

    When I was originally diagnosed my ferritin level was 1887. After weekly phlebotomies for 8 weeks they tested and it had gone down to 778. They decided to test weekly after that, the next test a week later had me at 1032. A week later, yesterday, I was down to 452. They told me that the increase

    1 reply 0 votes Last reply
  • carmel70893 2
  • moodyali 1

    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

    14 replies 0 votes Last reply
  • courtneylou 2

    Anyone else like me? Weight gain, sick, confused

    Hello! I’m 25 and have just been diagnosed with haemochromatosis (getting used to spelling that word). My doctor says I’m too young to have symptoms, but I also have diverticulities which usually only older people get – so it’s possible! I was always a skinny kid and then gained and lost weight as

    12 replies 0 votes Last reply
  • ron95828 2

    33 M with all LFT's normal but ferritin level at 936

    So I have been trying to deal with some severe anxiety over the past 3 weeks as I have never had my feritin level checked. Doctor took some blood yesterday to test for HH but I not a single person on my mother or fathers side has ever been diagnosed with this. Has anyone been through something similar?

    7 replies 0 votes Last reply
  • Blckiris 2

    Confused and worried

    Hello,  I was just told last Friday that I needed to get some follow-up testing due to my iron and I haven't heard back from my doctor yet. I'm concerned and worried because when I went online and I checked my ferritin levels it said  I was close to 4500 and I have a 66% saturation level.  I don't

    35 replies 0 votes Last reply
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