Volume 1, Number 1
Very Common, Yet Virtually Unknown
Potentially Fatal, Yet Easily Treatable
Hemochromatosis - Canada’s Most Common Genetic Disorder
A Message from Bob Rogers, Executive Director of the Canadian Hemochromatosis Society
Hereditary Hemochromatosis (HHC) is the most common genetic disorder affecting Canadians. It is a crippling, potentially fatal condition caused by a defect of iron metabolism that leads to iron overload in vital organs, joints and tissues. The complications caused by the disorder are preventable if a diagnosis is made before the excess iron causes irreversible damage, and effective treatment exists.
The prevalence of Hemochromatosis is one in 300 in the general population and one in 9 are carriers of one of the genes responsible for hemochromatosis. This means at least 100,000 Canadians have the genetic make-up to develop the most common form of hemochromatosis.
Treatment involves the regular removal of blood (a phlebotomy) which is like a regular donation but with a higher frequency. As the body makes new blood cells to replace those lost during phlebotomy, iron is pulled out from storage from the organs, tissues and joints and, over time, body iron levels return to normal.
Our Purpose
The Canadian Hemochromatosis Society was established to create awareness about this little-known, but common disorder so that early diagnosis would become the rule rather than the exception and needless suffering and premature death from undiagnosed hemochromatosis would become a thing of the past. In the meantime, we are here to provide information and support to those adversely affected by iron overload.
What this Blog will aim to do
Each week we will publish more information about Hereditary Hemochromatosis (HHC) and how it affects people across Canada. We will provide video, pictures, personal testimonies, news coverage, special events, and anything vital to spreading the word.
We believe that the more we can do to increase the awareness of this disorder and publicize the information, we will eventually ensure that everyone in Canada will know about this disorder and receive the medical care and attention they require.
For more information go to our website which is: www.toomuchiron.ca.
June 22, 2008
Thank you for your commitment to this insiduous condition.
However Health Canada’s nutrition section insists that flour be fortified with iron insisting that numbers of Canadians are iron deficient.
It would seem that if a person eats any amount of food one should be getting enough iron. Vegetarians of course could have a hard time of it if not careful.
The latest numbers have 1 in 80 people have at least one of the top three genes and are prone to
absorbtion in the heterozygous mode.
Baring starvation, alchoholism
(interesting cause and effect), internal bleeding and excessive births (without nutritional support), there should be little iron deficiency.
thnx so much for your time
regards
tom c
July 14, 2008
It would seem to me that eliminating the intake of hemme iron (from animal products, ie: red meat, shell fish) and reducing the amounts of non-hemme irons (fruits and vegetables) along with increasing dairy and products containing tannin, would go along way to stop taking in an overload of iron. The trick though is to find a balancing point, so that we with this horrible genetic disorder can stop the overload from continuing.
I understand the need for plebotomy’s, to reduce the overload from our tissues and organs, but what good is that going to do if we just continue shoveling iron into our systems?
To the previous poster, there are bakery’s around that make specialty breads that do not contain and are not fortified with iron… some of them are quite tasty… ie: tapioca and rice flour bread.. there is also a pasta that does not fortify itself with iron and is as tasty as Catelli… it is made by ‘Bioitalia” - is a certified organic pasta made with 100% organic durum wheat semolina …it is available at Buy Low Foods… in both spagetti and linguine.
I hope this was helpful to you.. and I hope someone will answer my questions..
Regards,
Rae-Lynne
August 21, 2008
I was recently helped at the emergency at jubilee hospital in victoria. The team treated me for tachycardia by electrically reestablishing a normal beat… The attending cardiologist noted several spots of a darker than normal colour on my forhead and higher up around the scalp line, and suggested I be tested for HHC. I had asked my gp in the past what these patches were and was told they were spots of sun damage….The test for HHC showed positive…. I am 61 yrs old, in ,I thought, good shape, but have showed over a long time, a number of symtoms that most of my friends thought were just a lazyiness on my part to manage my life, to depression and a lackadaisical attitude toward all sorts of things, even those that are crucial and feed my existance. I went to a shrink, and he said that I was not different in any way and it was not necessary to visit him again. Does anyone have info on some of the ways HHC affects the way some deal,or avoid every day situations.
September 5, 2008
I found out that I had hemochromatosis in Oct 2007. I’ve had several plebotomy’s but haven’t needed one for the last 6 months as my iron level is staying around 17 to 31. Is this normal for the levels not to keep going higher. I thought that I would need a plebotomy every few months. It just seems that my level are staying stable. I watch my iron intake very carefully. I haven’t found a Doctor yet who can explain why my levels are not going up or when I should have another phebotomy. I would greatly appreciate any information.
September 5, 2008
Hi Maya.
All of us are different. We load iron at different rates. Some quickly and some very slowly. The best plan is to keep an eye on your numbers and work from there. You may be one of the lucky ones that doesn’t have to go for a regular phlebotomy. There are some people that only have to go once a year.
September 8, 2008
My son has been diagnosed with hemochromatosis and he is on desferoxamin to remove some of the ferritin from his body I am not sure where this is going but I would like some information on products that are not iron fortified and where if anybody knows I could buy in Toronto Canada.
September 15, 2008
Maya Moore, I had a similar situation. I was diagnosed in 2004, had many phlebotomies and lowered my Feritin
to a low level(9). It stayed low and we monitored the Feritin regularly but I didn’t give any blood for over a
year. I began to experience some of the same symptoms and began to read more about monitoring more than just
Feritin. I learned alot from this website including the idea of checking Transferrin Saturation levels.
I forced my doctor to include that on the next lab order for blood tests. The results - Feritin was rising
rising slowly (41) but my Transferrin Saturation % was as high as it had been when i was first diagnosed.
When I pointed this out to my doctor we started a maintenance program of giving blood every two months.
Lo and behold I am feeling much better.
My recommendation is to keep good records and to check your TS% along with Ferritin. Don’t wait too long.
September 21, 2008
Hi Karen.
I doubt that you’re ready to go yet. It takes more than High tsat and ferritin alone to do a person in. The easiest things are to drink tea, avoid “organ meats, (heart, kidney, liver, etc.) and if you need to take vitamin C, take it at least 2 hours before or after meals. It speeds up the rate that our bodies absorb iron. Check out the forum at http://toomuchiron.ca
September 22, 2008
My blog got deleted by mistake but basically I am a 43 year old female that has not yet be diagnosed( but is suspected of having) hemochromatosis and I am scared to death.I am awaiting an appointment for a CT scan but am not sure what else to expect.I am not ready to go yet I have three kids 21,18, 12 and am having them tested. Mom and Dad are older and mom has alot of the signs of this and dad has alzheimers my grand father died of alzheimers and I don’t know if this has anything to do with HHC. Please tell me anything you can on this, I am so worried.
I am drinking black tea, green tea and stopped taking my multi vitamin( w/o) Iron)I don’t like red meat or organ meats and I leave the vitamin c to my 12 years old. I do take 1000 iu of vitamin D a day and salmon oil and low dose asprin
Is there anything I can do to get the extra Iron out of my blood until all the tests are done?
Please help me I’m so scared
September 23, 2008
Karen, Stay calm and consider yourself very lucky that you are finding out about this condition at this point in your life. Treatment is relatively simple and you can live a pretty normal life style. The important thing if you do test positive is that you contact other members in your family (parents, brothers and sisters) and make sure they understand that they should be aware that this condition is in your family tree and that they should discuss it with their family doctors. You should also have your children tested. Its all about awareness! The CHS website has lots of information and a forum with lots of comments from numerous people living with HH. Take care and don’t worry, HHC is something that you can live with.
October 6, 2008
Interestingly,with regards to diagnosis and DNA testing; I thought I was dying. At the time I was finally diagnosed, because I was suffering all the symptoms we had seen develope in our mother…2 years before, she died. We now believe she had HHC.
But it was a fight to actually get the DNA test done, they had and may still have stringent protocols in place that must be met in order for your gp to successfuly order the DNA testing
When he ordered mine he hoped that they would agree as the ferritin was so high and I was presenting with most all the symptom. Luckily they (the powers that be) agreed and HHC was confirmed. This proved to be a major win, because it was definately needed to provide my sibbling with proof a first degree relative had HHC so that they could have the DNA testing done even though they presented with only minor symptoms and normal to slight increases in their ferritin… Now they can manage it as apposed to suffering any perminate damage in the future as happened to me. 5 out of 9 of us have HHC. The others have yet to be tested.
Remember in managing HHC, to keep an eye on ferritin Saturation % as well as vitimen levels of - B12, Calcium, D, A because with phlebotomies these to can plunge causing return of many symptoms that can do damage. and feel welcome to ask lots of questions here and on the HHC sites . All the best
October 8, 2008
Hi, I was diagnosed in March ‘08 and I’ve basically learned more just from reading all of your comments then what my own GP has told me. My ferratin levels went to 326 and now I’m down to 215 or something like that. My doctor said simply to monitor, but now what I think I’ll do is just give blood every few months. Thanks for the interesting read.
October 17, 2008
I was diagnosed about 1 year ago, (in my early 50’s) started having venesections every 2 weeks for about 6 weeks, then every month, then every 6 weeks. Now I have one about every 2 months and hope to progress to 3 months or more. I just try to avoid those foods which contain high iron levels. I have cut down on alchohol but know I should cut down even further. I’ve had all the organ tests etc, so far, so good.
November 1, 2008
Hi my names Terry
Could you please help me? and explain a few things below - I had high feritin of 1020 in 2003, but with letting of blood for 12 month it came down to 200 and was staying there but now over the last 2 yrs has moved to 300, my other iron’s are middle of the range. I try to watch what I eat, just what do we eat to keep it in check?, as well I also try to eat food that suits my blood group O.
Also what food will help chelate the iron?
Other strange things are happening my Platelets have dropped from 181 to 132.
And I have M-spike of 3.2 and Immunoglobulin M of 0.38, Serum Immunofixation with light kappa chains, my WBC has dropped from 6.2 to 4.9, I also have testosterone replacement by reandron, befor that had sustanon needles.
Any advice would be very much aprecited.
Cheers Terry
PS My Dr has indicated I may develop Myeloma.
January 31, 2009
Hi. At the age of almost 59 I have just been diagnosed. I’m actually grateful to have an explanation for many of the things that have been going on with my body, joints and energy levels.
I’m now waiting for my referral to the specialist which, I understand, will take a couple of months at least. In the meantime I’m trying to figure out what I can and can’t eat to minimize my intake of iron. Who knew that so MANY things are fortified?
I’m happy to have found this site for sure.
February 6, 2009
Markem, I found your comments of September 15, 2008 very interesting. I am a 48 yr old female who was diagnosed in August 2007 and had my initial set of treatments ending in December (numbers went from 650 to 20). During that winter and most of the year, I was amazed as I had not felt this good for the past 15 years! It was wonderful. However, in Oct I started to feel tired again and now the fatique, aches and pains, insomnia has come back. I thought that my ferritin numbers must be up, but a recent visit to my hematologist confirmed it was only 163. I was shocked to say the least considering how I was feeling. The doctor basically said that the symptoms are in no way related to HHC and all in my head. He also refused to give me any of my recent blood test numbers other than the ferritin as he insisted that is the only number that I need to watch. Thank you for the information regarding the transferrin saturation %. I will keep an eye on it.
February 6, 2009
Hmmmm… two camps here on this blog: The ones hesitant to get tested (oh no you DON’T!!!). Read my story at http://www.78thfrasers.us/my_story and you’ll march right in and get tested. Avoid it at your own peril.
The other is/are folks start having some general symptoms return after reaching therapeutic or close-to levels. A few observatons - check carefully your glucose levels and your liver panel.
Also, I think Theodoric of York, Medieval barber had something when he bled people. A1C numbers drop dramatically with phlebotomies - it’s not an increase of glucose control - it’s another phenomenon completely (an excercise for the graduate student) - but the point I’m making is that mild phlebotomies have a therapeutic effect on a number of levels - check medical data so I’m not full of hot air, but the really feel-good feeling is not always permanent…
February 9, 2009
Kim,
After your Ferritin level dropped did you quit giving? I think that we generally feel good after we stop giving for awhile because we have brought our iron levels down and also because we are not giving on a regular and frequent basis.
Regarding the Transferrin Saturation percentage, I would highly recommend checking those levels. Fortunately, I kept pretty good records and can document a general decline in the way I was feeling with a general rise in TS% despite my Ferritin levels staying low.
I sympathize with you on feeling poor and would very much disagree with your “all in your head” doctor.
Please keep in mind that HH is a relatively “newly discovered” phenomenon in medicine and we are continually learning more about it and it’s affect on people. The more I read it appears that everyone reacts differently to HH. There are no set rules, only guidelines and you have the responsibility of taking care of yourself. Be proactive because even though your doctor may be a good one, I would gaurantee that he is not as concerned with your health as you are. If he insists that Ferritin is the only level to keep track of then he is not as up to date on HH as he should be and he is not as open minded as he should be.
Good luck to you! I would be interested to hear what your TS% level is if you can get those values.
February 21, 2009
Sadly, its taken over 2 years for our family doctor to pay closer attention to some information she received concerning my husband’s overall health from G.I. Special that cautioned a prescence of elevated iron levels and strongly recommended that further investigation be conducted.
Well 2 years later, he has finally seen a hemotologist and on Feb 11, 2009 was diagnosed with HHC. At present time he is still awaiting a few additional tests before developing a plan of action with the hemotologist to get his iron levels under control.
In spite of having asked our family practioner for some time and flat out refusals for further investigation, her comment always being a firm, “you don’t have hemachromatosis, its very rare!” We now understand that this seems to be widely believed by the medical community although sadly its untrue! Why are more in the medical profession being re-educated in this area? This illness has all but robbed us of a “normal” life with reasonable expectation to have at least a moderate quality of life and not endless and chronic pain, fatigue and worry!
Thank you for creating this site; as we hope it will help spread awareness.
Maria & family
February 21, 2009
* sorry I should have proof read my previous comment. It should have read, why AREN’T more in the medical profession being re-eductated?
thanks and sorry for any confusion being caused
March 23, 2009
Hi everyone! I was diagnosed with Hemo in June of 2008. Wondered why my joints were so sore, tired out and had gone through the change by the time I was 47. Thought I had arthritis that was passed onto me by my mother and grandmother. My brother was diagnosed with Hemo a year before I had my blood tested, as I had four other sisters who were tested and they were negative, so what were my chances of having this disease? Not me, but to my surprise I do have it and have several blood outlets done and is now down to 50. My regular doctor figured I did not have it as she was not educated on this newly awakened disease. No way she said, but only because the specialist my brother had seen and recommended all siblings be tested. I was so glad he shared that info with me because I had several symptoms for years, coloring of the skin, irregular heartbeat, etc. and really perhaps saved my life. I wondered if that was in my head or was I imagining things! I also have 2 boys 21 & 18 who will be tested. I have read articles on the website before I was even tested and said yes I do have this disease, as I had so my symptoms. Now have to get more educated on this and look after myself properly. Look forward to any new info. Thanks for this site!
May 7, 2009
Hello. Great site especially for a new person to Hemo. For a few years I have had fatigue and joint pain to name a few. After several visits to my doctor, blood tests and x-rays he could not find a problem. Then, after a visit to a different doctor more blood tests were ordered, this time including iron and ferritin. Voila!! I was tested for the gene and found to have Hemo. Although it is scary it is also nice to know what my problem is. My qusetion here though is how high is high. I have read that our 1000 over a long period damages organs. My iron count is fine but my first test was approximately two months ago and was 809. My last three were 884, 869 (after reducing iron intake) and 1390 (after a trip south). I am awaiting my specialist appointment. Has anyone else had as high or higher and if so how long did you require blood letting and at what schedule? Any advice would be appreciated.
October 6, 2009
I Have had Hemochromatosis for over 18 years, I was first sick with small but elevated liver functions. Had a liver biospy. Some small fibrosis but nothing they saw to cut my life short. I started the phlebotomys and it came donwe from 600 to 150 very quickly. I went once or 2 times a year for years all liver functions stayed normal or 1 or 2 points off. Recenty i found this bllod bank that would take my blood for free and use it to help people so i donated every 8 weeks for 15 months.I didnt bouce back as quick after my last donation so I went to mt DR and had a complete cbc and all was good my ferritin was like 31 never that low for me but my platelets were down to 130000, a little below normal. dr said we check again in 3 months. I have been reading were vitimin b12 can go down after several blood donations and cause platelets not to build back as fast. imhoping this is it.
December 24, 2009
I have been complaining of fatigue for 13 years and aches in my joints much longer than that. I have had doctors amazed at my “good health”. At 56 years old my BP is 118/68, no diabetes and they get very excited over my liver enzymes being “better” than average. Most say they wish they were as healthy as I am and one told me to come back when I am sick some time!. I should mention my biliruben level always has been high. Now things have come to a head. I have been under care of a sleep specialist for two years now. He found I have sleep apnea which is being adressed, but he says my fatigue can’t be explained by my apnea. I got put on Adderall which has ended my drowiness episodes, but now I feel like a half dead horse being proded on. He recently found my Ferritin level was high at 562. My fatigue is getting to the point where I can’t function very well. I am self employed and I know I am only being at best 50% effective and shows with my income.
I have been doing a great deal of reasearch on my own and found treatment is recommended at a level of 1000. I think because of fear of organ damage. My question is my level of 562 enough to explain this fatigue?
Thank -you