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Haemochromatosis

Also known as Iron Overload

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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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  • High Ferritin Levels

    Hi, I am hoping that someone can offer me some help.  Having being diagnosed with depression my gp suggested I should have a blood test to see if there was anything else going on. The first came back with high iron levels not massively high but 43% which is still just in the normal range apparently....

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  • Transferrin Saturation High

    Hi, about 2 years ago I was called by my surgery after a blood test to say my ferritin was high, it was 301, but nothing was ever done about it, it tends to go up and down between 224 - 301.  I am 58 female and white, not sure if that matters.  Every time the bloods are taken I am called and...

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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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  • Do symptoms get better with phlebotomy?

    I'm 37 and just been diagnosed with HH (C282Y Homozygote). I started developing symptoms last year including fatigue/lethargy, upset stomach, joint pains, a constant background headache and regular migraines, which are horrible!  I've been referred to haematology and I'm currently waiting...

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  • I need some advice

    Thank you for welcoming me into your group. I joined because I'm dating a man who suffers from haemochromatosis. I care so much for him, so I'm learning about this side of him. I truly want to support him. I've seen how it affects him in certain ways, and I wish there was more I could do....

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  • HH seems to be worst at night..

    Just wondered if anybody else is feeling like me and they are suffering with sleepless nights and there HH seems worst  during the night?  I have chest pains, stomach pain and wake up trying to catch my breath, which has happened a few times and really scary. I can only sleep (sitting upright...

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  • Beeturia and Hemochromatosis.

    Greetings. Waiting on my DNA results for Hemochromatosis. I have always found red beets to easy stomach pain, don't know why. However I do experience a harmless side effect called Beeturia. Red/pink urine and fecal matter after eating beets. I have heard there may be a connection between this condition...

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  • How Long until I get a diagnosis

    Good morning, following a suspected gall bladder attack last summer I had a blood test that turned up some unexpected results;  it showed I had higher than normal iron levels.  since then I have had 2 more blood tests that again showed elevated iron levels.  My GP has now said they want...

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  • Negative for HH but iron levels at 451 ug/l

    Have found the forum most useful. Second blood test shows my Iron levels at 451 ug/l and some of my bloods (Haemaglobin, WB, RB, Haematocrit, Neutrophil) have come back as above range.  I've had high (ish) iron levels since 2012 although back then, these were within range Gene tests...

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  • labs not consistent with HH

    Had bone marrow biopsy in 2016 due to chronic leukopenia.  Only abnormality was no iron in bone marrow and was told I would eventually become anemic and taking iron may help.  Last November, iron studies abnormal (elevated ferritin, iron saturation, decreased TIBC) so I stopped the iron. ...

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  • Possible Ferroportin disease?

    My name is Chris. I'm 51 and live in southern Ontario, in Canada. I've been sick since March 2017, with hemochromatosis-like symptoms. I have a tender abdomen and diaphragm area. I have extreme fatigue with minor physical activity, and excessive, interrupted sleep. If I exert myself too much...

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  • Treatment plan?

    Is everyone given a treatment plan for venesections ?  Only I get asked how often I’m supposed to be having them done but I haven’t been informed how often, Just given another appointment afterwards. Just wondered if it’s the same for everyone?  Thanks x  

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  • Hemochromatosis... different spelling from UK

    It's genetic. The treatment essentially the same values as UK. Hematologists who treat this in USA are usually also oncologists. I have had labs then subsequent 500ml phlebotomies X2 per month until the blood ferratin level is below 50. Took over 12 months of bi- monthly labs and phlebotomies until...

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  • ferritin level - at what level do you get symptoms ?

    Hi, I am a 42 old male. I have a healthy life style ( sport , diet , ... ) . For 2 months now, I have the following symptoms : fatique, muscle and join pain, occasional headache. 2 blood tests indicated that I could have haemochromatosis. Additional tests ( echo, mri, ... )  and blood work do not...

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  • high serum iron levels

    I've been anemic for over 40 years and have polycystic kidneys (the reason for the anemia). All of a sudden my serum iron levels are 161 (range is 37-145). I'm very concerned and am wondering what could be the issue. My HGB is mid-range (again, highly unusual).  My MPV is high so I'm...

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  • Possible Hemachromatosis (Self) Diagnosis?

    Hello, I'm new to this group. I'm in the U.S.  In October 2017, i was admitted to the hospital with what turned out to be food poisoning. They did a lot of tests and one of them was Ferritin, which came back at 450 ng/ml.  At a follow up visit with my primary care physician, a few weeks...

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  • Suspected Myocarditus but test results clear

    Hi.  I wonder if anyone can help me please?  Late January I started with sore throat symptoms, croaky voice and a cough and feeling tired.  A week or so later the cough became wheezy and I started experiencing shortness of breath.  By the next week I booked a doctors appointment 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, lack...

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  • Compound Heterozygous 36yoF...Mild HH? Link to Hypothyroid?

    I'm new and just figuring it all out. I started having crazy thyroid issues several years ago but everything came back "normal" I recently was diagnosed with hypothyroid after developing a goiter. And since, my amazing GP has discovered I am compound heterozygous. I'm starting to suspect...

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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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  • Should I be worried?

    Hi there; I’ve bern feeling ill for a long time. It’s only when I went to the GP with a list of my symptoms (1 of which was pins & needles & numbness in hands & feet) that he gave me a blood test. My serum Ferritin came back at 628 & serum ALT at 55.  More blood tests were done &...

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  • Had a strange experience at phlebotomy

    Hi All Had a bad experience today whilst having phlebotomy done today and wondered if anyone else has had the same thing happen. This is only my third phlebotomy and the blood was flowing freely today (unlike the week before when they could only get a 100ml) and then I started to feel sick, went hot...

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  • Liver biopsy results and likelihood of cancer

    Hi This is my first time posting and only recently discovered I have HH. My liver biopsy came back stating I had moderate liver deposition of iron and called it a grade 3 out of 4.  There was no cirrhosis or malignancy seen. Now I  am waiting for a liver ultrasound because my doctor said this...

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  • 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 very...

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  • Possible haemochromatosis?

    Hi, I am new here. I have a condition called porphyria cutanea (tardahttps://patient.info/health/porphyria-leaflet) I've included a link just incase anyone is interested/intrigued, it's rather weird. Anyway, one of the possible causes of this can be hereditary haemochromatosis , we've ruled...

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  • Scared and confused

    I am a 39 year old female. I had the Gastric Sleeve surgery almost 3 years ago. During the last three years my primary Dr has told me on several occasions that I was anemic. Well in September of 2017 he sent me to a hemotologist to find out why I was staying anemic. At that point he started me on 65mg...

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  • Without venesection how does the body get rid of access iron?

    Ive been suffering symptoms for a long time and been told my iron profile not high enough for venesection. My symptoms arent easing. I really lack knowlegde as does my GP as there appears to be no support. It seems that while i gave blood yearly it eased symptoms, now im not allowed to give blood Im...

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  • HH and now anaemic

    Discovered HH in my 50,s now 69 -ferritin reduced from 3800 to 400 .Now become anaemic due to the blood letting.Had a scary experience the last time I gave blood. What should I do and what is an acceptable ferritin level.

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  • Will I feel better after having a phlebotomy/venesection?

    I found out I have HH about 2 months ago and my ferritin levels are between 270 - 370 (I've had about 4 blood tests and my levels fluctuate), I haven't had blood taken yet and am wondering if by doing so I will start to feel better and my symptoms will go away? I would love to hear what other...

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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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  • Coughing blood

    I wonder if this could anything to do with my HH. I occasionally have a croaky throat and when coughing to clear it I am coughing up bloody phlegm, the Doctor has referred me to an ENT specialist. Anyone else have this?

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