Hereditary Hemochromatosis

Hi

Does anyone have any experience of this ? Iron overload. In my recent blood tests my iron was 147.9 with top of the range 150. I don't supplement and haven't for over 25 years. A member recently drew my attention to the possibility of H Hemochromatosis. Has anyone been diagnosed with this ? Are symptoms are noticeable ? How does it make you feel ? What treatment if any did you receive ?

Many thanks

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  • I have no experience of this problem. This link may be helpful :

    patient.info/doctor/heredit...

    Note that it says :

    Monitoring[3]

    Serum ferritin is the main investigation used because it correlates with symptoms and the risk of complications.

    When serum ferritin is less than 1000 μg/L the risk of serious liver damage is below 1%. Serum ferritin levels above 1000 μg/L are an indication for liver biopsy because of the risk of cirrhosis.

    When a liver biopsy shows cirrhosis, periodic screening for hepatocellular carcinoma, using echography or magnetic resonance imaging, is essential.

    You might find the American Merck Manuals helpful too - they have pages for patients and pages for professionals :

    msdmanuals.com/home/blood-d...

    msdmanuals.com/professional...

  • Thank you very much for that humanbean. I guess with my test result just within range I'm not over the 1000µg, so nothing immediate to worry about ? I'm hoping to see my GP at some point this week so should I be mentioning it ? or is that a daft question lol ?

  • I think you should mention the high-in-range ferritin and just ask if it is something you should be worried about, rather than making suggestions about what it might be.

    The most useful thing you could ask for is an iron panel and a full blood count. Let's just hope your doctor is having a good day.

    High ferritin can be caused by several things. See the table at the bottom of this link :

    irondisorders.org/Websites/...

    Given that your ferritin is still in range (just) I would suspect Anaemia of Chronic Disease (ACD) before I suspected haemochromatosis.

    irondisorders.org/anemia-of...

    This link gives numbers on what is classified as "iron overload" - note the differing units of measurement for the different numbers :

    en.wikipedia.org/wiki/Iron_...

  • Many thanks I'll work my way through those

  • Hi Kitti1, I know that high iron levels, haemochromatosis, can be found in people of Irish origin, it is also called the Celtic disease. I think you should talk to your gp/physican. I don't know where you live but it should be possible to be tested and if you are found to have this conditon the appropriate treatment is available. Women don't usually have any symptoms before the menopause.

  • How very interesting. As far as I'm aware no irish blood. I live in Manctester & originate from the area. My mum traced her family back to the early 1500's living within 15-20 miles. My dads side is from York, but I don't know how far back. Although we have got a dutch surname.

    Ill get it checked out. I am 15 years post hysterectomy.

  • Hi kitti1 I have high ferritin level 197 it's been like that for a year now spoke to my gp about it and she said nothing to worry about unless it gets into the high hundreds. I was thinking of giving blood to lower it.

  • My ferritin over the past two years has been between 600 and 880 most recently.Had test two years ago " normal" .GP yesterday said " nothing to worry about" .Er......

  • Hi Treepie & Raventhorpe as we know gps generally know little about the need for supplementing So may it also be the case that they aren't aware of the dangers of overload ?

    Treepie if I were you Id get a second opinion That sounds very worryingly high

  • Hi Kitti, That is what I thought but it was followed up two years ago amongst other tests for other problems at the same time.

  • So what did they say about the 880 figure ? Surely there must be something wrong with a figure so high ?

  • GP said not a problem, two years ago when investigated it was over 700.

  • If I were you Id definitely push for further investigation asap

    From what Ive read very high iron levels can seriously damage your liver / cause liver disease

  • Yes ,i will do some research first. I have read recently that there is a relationship between being hypo and the liver . Not sure what effect is .

    Will have to cut down the vino!

  • Oh I know me too Ive found since starting on t3 that I cant tolerate it like I used to : ( It makes my head feel very strange during and the day after Even with only 1 or 2 glasses So good for my health all round no doubt

  • Hi treepie wow that's high I would want them to investigate do a full iron panel at least, I agree with Kittie 1 you should get a second opinion if I were you, have you considered donating blood as I heard that can reduce your iron.

  • It is some years since I stopped donating blood. I cannot recall exactly why I think I Was on some medicine that they did not want at that time.Also there was problem was the difficulty they had getting the needle in the right place and the very slow flow .I was there ages.

    I will check it out again for current exclusions.

  • I popped in blood place the other day and asked about donating blood was told it's fine if your on levo as long as you have been on the same dose for atl least 3 months and your doctor is happy with your levels.they will check other things on the day as well including iron but I suspect that's to make sure your not anaemic

  • Had levo increased yesterday.

  • Ive just thought I'm sure you cant donate when you have a thyroid problem

    Also the recommended treatment to reduce iron levels is phlebotomy of 400ml to 500ml once a week to once a fortnight So I think donating blood would be a drop in the ocean If you haven't read the first link humanbean put up its a good idea to have a good read

  • Will read the link ,thanks.

  • Hi I have heredity haemochromatosis diagnosed in 2011. Have you had the genetic test? I am a member of the haemochromatosis society and there is also a fantastic Facebook page with lots of information and support. A lot of medics do not have enough knowledge of this condition therefore some give the wrong information. I started venesections when my ferratin was only in the 200's. Specialists like to keep ferratin under 50 but I have asked mine to be maintained around 70 due to thyroid problems-something my specialist had not heard of. Symptoms can be arthritis, tiredness, loss of body hair, tiredness, tanning of the skin, gum problems. It is also linked to thyroid, diabetes, cirrhosis , heart problems if iron gets into the organs. The basic treatment is venesection. You should also avoid eating fortified iron products like cereals and bread, do not supplement with vit C (as helps bind iron), and do not drink alcohol with food! Drink tea or milk with food. Please check out the Facebook page as it is an open group. Good luck

  • Thanks for all that info. Why not drink alcohol with food ? How about other times ?

    I eat a lot of beans ( stand well back ) & lentils, which are I believe high in iron. Should I reduce / stop eating them ?

  • How were you diagnosed Anne-M?

  • Sorry just read your ferratin is in the 600-800's! Your GP is totally wrong you need a full iron panel, the genetic test asap and referred to a gastroenterologist in order to get a liver scan and to start venesections! Please post on the Facebook haemochromatosis page and I am sure they will agree! Terrible that your dr thinks this is ok! Please let us know how you get on

  • Sorry, me again, you could donate but it will not be enough to bring down your levels. Also we hh sufferers have to go through checks before we are allowed to donate. They are trying to change this as our blood is choc full of iron! Ferratin can be raised due to inflammation but yours is very high! I am also in my 50's so I no longer have periods so I have to have venesections more often. At the moment you can only donate a couple of times a year to the blood bank-I think!

  • Thank you so much for your posts Anne-M and all the information. I'll mention it to my doctor and ask for further tests. Treepie please see these posts by Anne-M. It looks like you need tests and treatment asap Good luck and let us know how you get on 👍

  • Alcohol helps bind the iron from the food you are eating. Advice ranges from give up alcohol altogether to only in moderation. Drink an hour either side of food. The liver can be one of the earliest places iron can be deposited. Due to ignorance hh sufferers have been accused of heavy drinking when in fact this was not the case. I am lucky that my liver is not damaged but early diagnosis is very important. Obviously men do not menustrate so they often have horrendous high ferratin levels before being diagnosed. My mum has hh and was diagnosed after me-as relatives are advised to be tested-her arthritis is crippling! Diagnosed in her 70's lots of damage was done. However everybody is individual! I cannot advice enough to check out the Facebook page!

  • Perhaps why mine is high 😕 I do like a glass or 2 with my dinner. I'm sorry I don't mean to make light of a very serious condition. That, by the sounds of it, is equally badly treated as thyroid disorders. The medical 'profession' should be ashamed of it self.

  • We are all human and I have also been known to have a glass or 2 when out with friends! I should know better-but we are all human! The society is working very hard to educate medics and try to get the word out to undiagnosed people! It is not only an Irish condition but is often call the Celtic curse! It is mostly Northern European!

  • I was reading about this on an Irish Genealogy Group this morning. It needs to be evaluated and treated. Both parents I think carry the gene and it appears to be more prevalent with origins along the west coast of Ireland. It needs to be monitored carefully and the usual treatment is to draw blood often to keep the levels down and to give your liver a chance to work properly. Unfortunately this blood can't be given as a donation. Someone posted though that Canada will accept those donors and it sounded as though this patient was able to send it there but I didn't take too much notice of fine details.

    I think the person with some details had googled something along the lines of the Irish blood problems and apparently a few things emerged. It is manageable apparently but needs monitoring. Sorry I can't remember much else

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