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Haemochromatosis

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  • ellen23311 2

    What to expect from first venesection?

    Hi, I saw my consultant for the first time since being diagnosed today, so I'm pretty excited to get going with treatment. In comparison to most people on this forum my levels are pretty low with ferritin only at 310 but at the same time I'm only 19 and dealing with this all by myself. What should I...

    4 replies 0 votes Last reply
  • Tina 72 1

    My levels are not coming down much

    I've had 6 venesections and my levels are not coming down much is there anything I shouldn't be eating I don't eat a lot of red meat don't really drink much alcohol.

    1 reply 0 votes Last reply
  • Alenaorr 2

    Venesections not working

    Hi I've been following this forum for a while now but this is my first time posting. I was diagnosed with HH 4 months ago and my level was 1270. I started fortnightly venesections and got my levels checked again after 2 - my level had gone up to 1290! My consultant told me not to worry as this can...

    11 replies 0 votes Last reply
  • wes04 1

    Possible hemochromatosis?

    I've had elevated liver enzymes for about 6 months and my doc ordered a liver biopsy during a gallbladder surgery. The results showed significant iron deposits in my liver. My recent labs were Iron & TIBC 327 iron serum 120 Iron sat 37% Ferritin 272 ng/ml Is this possibly hereditary hemochromatosis...

    2 replies 0 votes Last reply
  • peekay 2

    Me again!

    Hi boyz'n'gurlz, My wee sister has now been diagnosed(?) with haemochromatosis. I had a phone call with her earlier and she said she was "homozygous" and a carrier. To the best of my knowledge this isn't possible as a carrier is  always heterozygous. Is this correct?

    2 replies 0 votes Last reply
  • Nic42 2

    High iron / Hemochromatosis

    Hi.  Could anyone help on the below results please? I'm at my wits end with my drs. I am still awaiting my Gene results to find out if I have Hemochromatosis or not. I know I have high ferritin levels but how high are they? I also know that my usual iron levels are normal. thanks in advance x   

    1 reply 0 votes Last reply
  • 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 worse...

    48 replies 0 votes Last reply
  • Chris8968 4
  • Brummiegirl70 3

    Dental problems

    Since joining this forum I've found out so much I've always put my symptoms down to my other illnesses But after talking to a lot of HH sufferes I now realise it's due to this illness It's good that we can help each other ESP with symptoms that a lot of us didn't realise was due to having HH From...

    9 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 know...

    38 replies 0 votes Last reply
  • carmel70893 2
  • Chris8968 4

    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 was...

    2 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 referral...

    8 replies 0 votes Last reply
  • marie13049 3

    Drinking black tea with meals

    My ferrintin is high at 512 it has gone up and down over past 4 yrs. GP advised me to be on low iron diet. I read that drinking green tea or milk with meals might help with less iron absorption. Has anybody tried this? Going to have a repeat blood test in 6 months and if it is still elevated will ask...

    5 replies 0 votes Last reply
  • 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 hour...

    17 replies 0 votes Last reply
  • xomami 2

    High iron levels?

    I been trying to figure out what is wrong with me as I suffer with a list of issues that I thought I had a "autoimmune" illness as I had a + 7-8yrs ago. But the DR tested me again it was - however she noticed my blood was showing high levels of iron? I don't take supplements so the nurse was going to...

    7 replies 0 votes Last reply
  • Taurinegb 1
  • john91105 2
  • leighann39167 1

    can anyone tell me what you think by these numbers

    Sorry I cannot post a picture of my results but this is what i have  Iron - Serum 34.00 TIBC 20.00 5 Transferrin saturation 0.63 Does this mean anything to any of you?  I am between doctors right now as ours was let go and I am looking for answers.  I am dealing with severe fatigue, insomia, constipation...

    0 replies 0 votes Posted
  • paul76189 1

    Haemotomocrosis question

    Ive been having blood test done and my 1st test was 506 ug/L 44 percent saturation My next test is was slightly higher than this . Just found out today i have H63D homozgous metuation detected. As they were testing for the gene. The doctor recommended to have blood taken out at the red cross blood...

    5 replies 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 since...

    18 replies 0 votes Last reply
  • KEVINFRANCIS 1

    I have a referral from my GP to a blood specialist

    I joined a new surgery a few years back and they did a full blood count my iron level was 482. other wise all OK. I had no symptoms of anything. The next time I went babk to the Dr a year later I was displayingI some of  the symtoms of haemchromatosisthemy My blood came back with an iron level of 624....

    0 replies 0 votes Posted
  • mariamaurea 1

    I need my family/friends to understand and support me.

    I just got diagnosed with HH after a year of intense symptoms. The depression, fatigue, joint pains, mental fog, irritability, no appetite, no sex drive and weight/hair loss is ruining my life and me. My family has no idea how debilitating all of this can be. I feel like my boyfriend and I need to go...

    5 replies 0 votes Last reply
  • mariamaurea 1
  • kristi44423 2

    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 free weights...

    15 replies 0 votes Last reply
  • 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 absorbtion...I have had hemochromotosis for 15 years and have not taking these two vitamins...but may need them for health reasons now...Thanks!

    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's...

    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 was...

    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 less.They 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 yet... 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 they...

    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. I...

    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 today.My confusion is that my iron levels are 117 but serum saturation is 85 percent....

    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 of...

    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 experience...

    8 replies 0 votes Last reply
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