This
website contains facts, information and personal experiences
of haemochromatosis
I built this website about ten years ago and over the years I have had many distressed men and women write to me for help and support after they or a spouse, partner or child has been diagnosed with Haemochromatosis. It seems likely that many of you will have similar issues to those addressed in some of my emails to and from our fellow haemochrotics, so, I am going to paste some of the most relevant ones into this page. I will, of course, change the names of the people concerned
Letter: I was diagnosed with Haemochromatosis four years ago..... Hi Alan,
I hope you don't mind me asking you a question regarding Haemochromatosis. I was diagnosed with it around 4 years ago and started having regular bloods removed. This went on for around 2 years and then each time I went I was told I was okay and no blood has been taken.
I am a male aged 50 years, I have diabetes and my sex drive is non-existent. I also suffer from extreme tiredness, and dizziness along with anxiety and panic attacks.
I've had ever test known to man over the past 2 years and spent time as an in-patient having had suspected mini strokes although again after testing this has almost been 100% ruled out.
My question is could the Haemochromatosis be causing all my symptoms?
Stephen
Alan's reply
Hi! Stephen
Good to hear from you and I have read your e.mail with interest and from the outset I can tell you that it is most likely that your symptoms are caused by haemochromatosis as this illness has many facets and not all of them are listed under the normal range of symptoms. However, I am surprised that there has been no improvement in your symptoms since you are ostensibly de-ironed and it is a pity that you didn't include your latest ferritin result. Have you had your testosterone level checked as I bet it is very low: mine was nil when I was tested some years ago and I take a daily capsule which peeks me up.In view of your sexual dysfunction which is common in haemochromatic men I would suggest that you have your testosterone checked and if, as I believe, it will prove to be low, then ask for a referral to an endocrinologists with a view to having replacement therapy which should pep up your sex life and make you more energetic.I am wondering where you live as we have set up a West Midlands support group which is growing and giving much help and support - click on the link to 'Support Group' on the nav bar at the top of the page. If you are with travelling distance, do come and join us at our next meeting. If that isn't possible, please feel free to come back to me here if you want to discuss anything else.
Best wishes, Alan visit my page on sexual dysfunction
Letter: My children aged 12 and 10 have been diagnosed with Genetic Haemochromatosis.... Good evening Alan. I am Lynda from New Zealand. My two children Ruby 12 yrs and Marcus 10 yrs have both recently been diagnosed with Genetic Haemochromatosis. We are STILL waiting to see the specialist after 5 months. I have done as much research as possible but have not found anyone to talk with who knows anything about this disorder, until now... I would really appreciate any words of wisdom from you please Alan. In all the research I have done, says changing your diet makes NO DIFFERENCE to your levels of iron, but I have changed my childrens diet. I cook very little red meat, absolutely no organ meat or shell fish and no iron fortified cereals, as i feel it reduces their intake hugely. (or am I just trying to help myself feel better ? The three of us have been geneticly tested. I have one bad gene and my ex-husband also has one bad gene. Our beautiful children have both bad genes. I felt so guilty for quite some time, but I am now dealing with this disorder good and proper.
I would really appreciate any help with diet please. Also how could I obtain a copy of the book you have read ? I have read the cookbook already
Alan's reply No 1 of 2
Hello Lynda,
I have read through your e.mail and I am not sure whether or not your children have actually been diagnosed with haemochromatosis; that is have they got signs of elevated iron levels or are you basing this on the fact that they are homozygous (both genes)? This is important because just having the mutant genes in itself does not mean that you are sure to inherit haemochromatosis; in fact the chances are fairly low. Haemochromatosis has what they call a low penetrance which essentially that whilst all folks with the illness have the mutant genes, not all folks with the mutant genes go on to develop the illness; some put it as low as 5%. it may be that you are worrying unnecessarily. In the U.K. our medical specialists do not tend to worry to much about diet but I think that you are wise to give your kids a low iron diet as it will do no harm and should they becaome haemochromatotics it may well help. Personally, I do not eat any meat and this has helped to keep my iron down. If I have not answered you fully,please feel free to come back to me.I am glad to note that the U.K. is not the only country where there are long waits to see specialists
Lynda's response
Hi Alan. Thank you so much for replying to me. I really appreciate that. In our tests, a woman's iron level should be 20 to 30, my daughter Saffron is on 60 . they are considering her a woman's size due to her being very tall and nicely built, and Marshall is on 49. You are probably very right in me being far too worried. I cant wait to see the specialist, but that is what we have to do... wait...
Alan's reply No 2 of 2
I feel that I have to reply and stick my neck out but it seems that your children are being suspected of haemochromatosis on their iron levels which vary considerably and are not an indicator of haemochromatosis. The test that is done first is the Serum Ferritin as this is a measure of the " stored iron " in the body.Do you have a figure for ferritin as this is very important and if you haven't this is the first thing that a specialist would want.
Also, can you tell me if there is any Celtic especially Irish lineage within your two families as this can also be a valuable indicator
.
Letter:
I came across you most interesting and informative website whilst browsing on hemochromatosos, which I have been diagnosed with. My ferritin has been over 3,000 and life many folks I have suffered from extreme fatigue which brings me to the point of my e.mail - my sex life has rather depleted in recent years and I am only 52 and when I enquired my doctor said that I had hypogonadism, whereas I had put it down to being so tired all the time. In your experience is this a common experience and is there any way that this can be corrected.
Arthur.B. Oklahoma City.
Alan's Reply
Thank you for your e.mail and let me assure you that hypogonadism is a frequent symptom of hemochromatosis and really means that your testes are not producing enough, if any, testosterone, the male sex hormone. On the medical level, this lack of testosterone may bring about osteoporosis (brittle bones) unless treated.
I was diagnosed many years ago with hypogonadism and osteoporosis and ever since then I have been on some form of testosterone therapy and at present I am using patches impregnated with testosterone that permeates through the skin and is absorbed by the body. Let me make it clear that I was not actually being treated for sexual dysfunction but the therapy has most certainly perked up my libido. There are risks with this therapy and expert help should be sought from an endocrinologist. visit my page on sexual dysfunction
Letter:
Hi
I read your web page and wondered if you could help or give me some info. I became ill 4yrs ago and was not treated very well by my gp until my blood tests came back. He then became concerned. He wanted to know why a women of my age, 52yrs had so much iron. He said that my iron test was 16.5. I went to see a chest consultant privatly but he almost laughed at my gp's suggestion. I then saw a neurologist who said the same. He did the ferritin? test and said that I was ok - but I don't believe he took it seriously. As of now, I still feel ill but cant go back to my gp as I get this feeling he is sick of me... and, to be honest, I am sick of them. Any ideas? Can I be tested privately? Thanks for any help you can give. Paula.
Alan's reply
Hello Paula and thank you for your e.mail that whilst it is disturbing it is by no means unusual. I am not surprised that your G.P. was laughed at for saying that you iron was high at 16.5 as this is at the lower end of the range. I note that you want a private test on your Serum Ferritin level and this could be easily done if you had a sample of blood available; for which you need a nurse or a phlebotomist.
I have found a possible answer for you on Google and that is to search: U.K. Private G.P. where you can find a list of private clinics to chose from. Please come back to me if you require further assistance.Alan
Letter:
Hi Alan dont know if you remember but my husband wrote to you about 3 years ago asking about your experiences with venesections. My name is Kathryn and I am writing to you to see if you can answer a question for me. Just before last christmas Pauls reading got to around 50 but he continued having venesections monthly until April and his last reading was 52, in March it was 58 and in February it was 27, we were told in April not to go back to clinic until August this week in fact, Paul had a blood test and his ferritin reading was 68, he doesnt believe this reading and says it should be much higher, Paul drinks a lot of alcohol but has the genetic type of haemachromatosis. Could you tell me please if after they get your reading down to around 50 and it is controlled if you have to go longer between venesections or if it takes longer for the reading to creep up. Ive told him to trust the doctors but he says he doesnt trust them no longer as he thinks the reading should be higher and says he is throwing the towel in and not going back. Im very worried, the hospital are no help at all and dont seem to care and I need to talk to another sufferer to share your experience.
Hope to hear from you soon and hope you are keeping well.
Kath
Alan's reply
Hi Kath, Thank you for your e.mail and to be quite honest I cannot remember your husband's previous enquiry but that is not of any importance.
If you firstly look at the ferritin problem from a mathematical perspective. If hypothetically your body absorbs say 10 units of iron a month and your ferritin level is down to say 50 then the monthly increase is about 5 but if your ferritin was say 1000 then it would be 100 and so you will see from this that the rate of increase rises exponentially and is much slower at the lower levels. Consequently, when you are in the so called de-ironed state of around 50 they will only venesect you about 3 or 4 times a year just to keep the level low and this is why this is known as the maintenance stage. I hope this answers your question. I went to a meeting of consultants recently and the top guy said that as long as the ferritin was 100 or less he did not become concerned.
I am afraid that alcohol and iron overload are likely to be a fatal combination as both damage the liver and haemochromatotics tend to die from either liver failure or liver cancer. It is simply stupid to drink if you have haemochromatosis and I am not just talking piously as drink ruined my marriage and broke up my family and I haven't touched alcohol for a few years. Do please visit my improved site at www.mysilentillness.co.uk and click on the link to alcoholism and you can read my story.Please come back to me if you need any further information or help. Alan
Letter: Hello Alan
Thank you for your earlier correspondence about my enquiry concerning the possibility of me having genetic haemochromatosis and I followed your advice I insisted on seeing a top specialist who gave me a gene test which ruled out genetic haemochromatosis. After more tests he eventually diagnosed that I had pulmonary haemosiderosis which was a shock to me as this had not been considered before. I know nothing about this illness and any assistance would be gratefully received. Jessica, Teddington 31.8.11 Alan's reply
Hi!Jessica, It is good to hear from you again but I am rather sad to hear that you have been diagnosed with pulmonary haemosiderosis which is a fairly serious and uncommon illness and does have some similarity to genetic haemochromatosis in that they are both iron overload conditions. I know very little about this illness except that iron accumulates in the lungs.I must emphasis that you need to speak to your consultant on any questions and problems and outcomes as I neither have the experience nor the knowledge to give you any meaningful information and I would doubt if your G.P. was able to do so either.Please keep in touch.
Alan 1st September 2011
The Iron Disorders InstituteGuide to Hemochromatosis
click on the book for more info
The Hemochromatosis Cookbook
click on the book for more info
This book has been my bible and reference book for many years and I have never found another book that is so clearly written and so well structured as it deals with many problems through case studies and has a comprehensive index. This is the only book once offered for sale by the British Society. It is authoritative and well written and I would not be without a copy.
I have always enjoyed cooking but I was a little bit phased when I realized that I would have to cook differently to limit my iron intake. Cheryl Garrison's book, has been a great help to me in keeping me focused on this dietry requirement. Cheryl's husband suffers from our complaint and Cheryl whom I have known for several years, has worked intensely to find tasty and interesting low iron dishes. She is rather an authority on G.H. and ran a lively forum for the Iron Institute of America.
October 2011 - Sophie Lee from the States has brought to my attention her help line for IBS and as feel very strongly that there is a link between Haemochromatosis and IBS I'm mentioning it here.
Sophie has also written an interesting book on the subject. Contact: www.ibstales.com