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Haemochromatosis

Also known as Iron Overload

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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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  • Deb

    My husbands ferritin levels keep rising was600 then blood test month later 625 then went to 762 a month later but has been told hemortois test is normal What is wrong

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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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  • I may have hereditary Haemochromatosis. Here are my test results

    I suspect I may have Haemochromatisis. My iron blood tests are very abnormal and strange. I’m not sure if I have a rare form of haemochromatosis. My doctor cannot discipher the results. He has never seen results such as mine. He just ordered a CT scan of my liver which turned out Normal.  I’m 39,...

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  • Anyone else have swollen armpits?

    Hi all. I'm new to this forum and recently diagnosed with HH. I currently have shoulder bursitis and have suffered tiredness since a teenager. I've been getting swelling and tender in my armpits when I lie down sometimes. Doctor doesn't know what it is and I've had a breast ultrasound...

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  • Diagnosed with HH in Sept last year..

    Was diagnosed with HH in Sept last year and my first apt with consultant was in November, saw a registrar instead at appt and told that my levels weren't too high so they were just going to monitor me. Had another appt in January (last month) and saw consultant told I need around 6 venesections (...

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  • Rash on my chest and neck

    Hi I’m 50 years old and just been disagnosed with hemochromotosis and Iv got this rash on my chest working it’s way up my neck so so sore creams doc gave me not working can any one give advice on a good cream that actually works got diprobase and epimax but it’s not working 

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  • Painful ankles, shoulder and hips

    My numbers are dropping rapidly but i hurt like buggery. Doc is looking at vitamin deficiency and booked me in to see a rheumatologist. I have no swelling but it is as if my ankles wont take my weight. I am about 145lb so although heavier than I like i wouldn't have thought it would be big enough...

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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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  • Alcohol????

    Reading over other people experiences,I too have started having a strange reaction to alcohol. I know it's not good to drink,but before diagnosis when I was completely oblivious to this condition I must say I did like a drink socially,but since I have been having venesections I find that even a couple...

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  • Symptoms

    Hi i was diagnosed about 4 years ago and advised i one dominant and one less dominant gene and would not need venesection. My last iron profile a few weeks ago was 199 and ive been advised that it needs to be ovr 300 for blood letting..yet im suffering chronic fatigue joint paint stomach pain and ive...

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  • Does this make sense?

    Response from haemo helpline high ferritin hfe normal. Serum ferritin can be an indicator of high stored iron, but contains no iron in itself and is also raised in other transient conditions like inflammation and infections.  

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  • Understanding genetic test results

    My GP phoned me on Tuesday and told me my tests results are negative I do not haemo.  Today I accessed my health records and noticed she has commented on the HFE tests.  Normal with normal range.  No action required.  Reading the results it seems I am a carrier of one of the gene...

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  • Feeling weak. Anyone has tried vitamin supplements ?

    Hi. I was diagnosed with HH in December 2017, and have undergone two phlebotomies until know (early December 2017, and early January 2018). I have also changed my diet habits drastically, almost suppressing read meat, and other foods rich in iron. I do not know if because of the diet change and...

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  • Nausea, Lethargic, Falling Behind in School

    My iron is around 1,300; I've noticed joint pain, nausea, and fatigue. As my iron levels have been going up, nausea becomes more intensified, and I have thrown up a few times because of it. I also notice that I just don't feel awake at most times, I'm always tired, dizzy, and never focused....

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  • Normal genetics tests

    My genetic blood tests came back normal I do not have haemo. I am still concerned as my ferritin is still high and fluctuates. GP said no action required. I suggested a yearly routine tests of iron studies etc. Does this mean although my ferritin is high I do not suffer from iron over load.? What do...

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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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  • 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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  • New to HH. Struggling with Chronic Fatique

    I recently was just diagnosed with Hemochromatosis at the age of 45. I have struggled for years with chronic fatigue, depression and other symptoms. At one point years ago my old doctor told me I had PTSD and GAD. Sent me to see a psychiatrist. After about three sessions of doing breathing exercises...

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  • 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....

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  • Waiting for results of genetic testings

    I must be very unlucky, my first blood tests could not  be completed as there were not enough blood. Second tests got lost in transit and I had my third tests and waiting for the results.  My ferrintin levels goes up and down for the last three years but below 1000.  The highest it has...

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  • Yeah! My numbers dropping but I hurt like hell.

    Hello everyone I had reason to be elated last week when my venesection nurse shared my latest figures. Numbers falling quickly surprising them all, I was told If it continues I could be in maintenance by February *waves arms and punches air* I wish I could just hold that thought alone in isolation but...

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  • Free Book(Glasgow, Scotland)

    Hi Folks,  I was given ' The Hemochromatosis Cookbook' by my dad for chrimbo and it's of no use to me. If anyone in the Glasgow area wants it I can drop it off/meet you somewhere. Otherwise it's just going to gather dust and I would rather somebody got use out of it. 

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  • Confused

    Hi all I had a ferritin reading of 497 with really bad fatigue,headaches,brain fog,joint aches and stomach issues.My transferrin was also raised.My gp told me I had hemochromatosis and was referring me to hospital.The next day she rang me and said I had to be retested a month later at the hospitals request...

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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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  • Curious about symptoms

    I have not been diagnosed but have an appointment with GP coming up. I have spent 10 years with fatigue, joint pain, muscle pain, bronze skin discoloration, migraines, diabetes disturbed sleep, arthritis, hip bursitis, pancreatitis, diverticulitis, heart palpitations, etc. I had ask my previous dr about...

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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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  • Alcohol

    My husband has just been diagnosed with hemochromatosis.  I’ve noticed for a while that his alcohol tolerance has lessened.  He is only a social drinker, maybe goes out every couple of weeks but Before he would have a few pints of beer and be fine but now he seems to be getting drunk very...

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  • Genetic testing, how long do results take?

    Hi! I had bloods done to do the genetic screen for HH just over three weeks ago. I was told at the time they usually take 2 weeks to get back, but the surgery still has no results. Does anyone have any idea how long the results actually take to come back? I'm in Liverpool but don't know...

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  • Should I wait for re-testing, or push for sooner?

    I had high ferritin in Jan 2017 (229 ng/mL), high transferritin saturation last week (58%), and this was what my doctor said when I asked about hemochromatosis: "given that in 2011, there was evidence of low iron levels, chances of you have hemochromatosis is unlikely - suggest stopping all...

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  • Feeling rough

    Hi all this is my first time ever joining a chat so im not sire how this all works. I have given blood 2 times now 500ml each time which my specialist has just stoped for a while as I've been feeling very dizzy, weak, extremely tired and been feelinh very sick. It's nice to read some.comments...

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  • Why Do I Have High Iron In My Blood?

    Hi All, Blood results just came back. Doctors says all are ok. I'm wondering if this is really ok though. My iron in blood is 259 ug/dl normal range is between (37-145) my doctor said even though its high this is ok as my ferritin is in range its 35ng/dl normal range is between (15-150) is it...

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