lifetime lethergy
- Thread starter lizzie
- Start date
I work with a guy and he has the same and says he feels well even though he has it.
He doesn't drink wine, but drinks lots of beer instead
.
the normal body stops absorbing iron from digestion when the daily requirement is met ... someone with hemochromatosis doesn't stop absorbing iron even when the requirements are exceeded.
iron is in most foods. some foods, like red meat, have a much higher proportion of iron than - say - nuts.
like all heavy metals, excess iron is not passed from the body so therefore this excess absorbed amount is stored in the liver, heart and pancreas. a normal body absorbs around 10 (whatevers) daily whereas someone like myself absorbs up to 40-70 (whatevers) daily, so the balance stored builds up very quickly.
apparently this stored iron can reach levels to set off airport metal detectors. a restrictive diet has very little affect - although it is recommended to cut out red meat for the iron, and alcohol because it increases iron absorbtion and gives the struggling storage liver a hard time.
there has been some success with calcium supplements as calcium blocks iron absorbtion, but the apparently the body adjusts within months to compensate for the extra calcium and continues on it's merry way.
** sorry if i'm not explaining myself clearly - before today i had never heard of hemochromatosis and was just repeating what the doctor had told me by using the word "make" instead of "store".
i thought it would be good to share as there were a few on here that said they had similar symptoms, so the links might be good reading for them and also to get checked out.
very interesting reading today ... when i should've been painting the laundry!
iron is in most foods. some foods, like red meat, have a much higher proportion of iron than - say - nuts.
like all heavy metals, excess iron is not passed from the body so therefore this excess absorbed amount is stored in the liver, heart and pancreas. a normal body absorbs around 10 (whatevers) daily whereas someone like myself absorbs up to 40-70 (whatevers) daily, so the balance stored builds up very quickly.
apparently this stored iron can reach levels to set off airport metal detectors. a restrictive diet has very little affect - although it is recommended to cut out red meat for the iron, and alcohol because it increases iron absorbtion and gives the struggling storage liver a hard time.
there has been some success with calcium supplements as calcium blocks iron absorbtion, but the apparently the body adjusts within months to compensate for the extra calcium and continues on it's merry way.
** sorry if i'm not explaining myself clearly - before today i had never heard of hemochromatosis and was just repeating what the doctor had told me by using the word "make" instead of "store".
i thought it would be good to share as there were a few on here that said they had similar symptoms, so the links might be good reading for them and also to get checked out.
very interesting reading today ... when i should've been painting the laundry!
Haemophilia has nothing to do with iron stores. It is a clotting disorder where the blood doesn't clot if you cut yourself.
We need iron to make haemoglobin, and it is the haemoglobin that carries the oxygen which creates energy, for the body to use.
Very simplistic but hope this helps.
Slim
testing
Lizzie,
If it is a definite diagnosis make sure you get your children if you have any tested and get your siblings to do the same.
Prevention is better than cure
Slim
Lizzie,
If it is a definite diagnosis make sure you get your children if you have any tested and get your siblings to do the same.
Prevention is better than cure
Slim
ahhhhhh! i see - body keep absorbing iron - that makes sense.
yes calcium blocks iron absorbtion so it may be a good stop-gap for the moment - or assisted therapy.
and sorry - i meant anaemia - not haemophelia - derr fred!
non-haem iron (vegetable source iron) is reasonably harder to absorb that haem iron (animal flesh), but iron absorbtion increases greatly with VitC.
maybe look at vegetable sources of iron because it is harder to absorb and your body may not get all it "wants".
For thiose who think they may have Obstructive Sleep Apnoea, PLEASE GET CHECKED OUT.
I have needlessly suffered for at least the last 8 years but got tested late last year and got my CPAP machine on December the 16th and have not felt this well since my teens. !!! the difference is incredible.
It's easy to sleep with a mask on, you dont even feel the air splinting your airways open with these modern machines and the whole thing has become part of my lifestyle now.
I thoroughly recommend that if you even remotely think you have OSA, get a sleep study.
I have needlessly suffered for at least the last 8 years but got tested late last year and got my CPAP machine on December the 16th and have not felt this well since my teens. !!! the difference is incredible.
It's easy to sleep with a mask on, you dont even feel the air splinting your airways open with these modern machines and the whole thing has become part of my lifestyle now.
I thoroughly recommend that if you even remotely think you have OSA, get a sleep study.
My dad went undiagnosed for many bedridden years aswell. He was even misdiagnosed with CFS. In 1998 he was finally diagnosed and commenced CPAP therapy. It was like lazarus waking from the dead!
He had been bedridden for eight long years and now he enjoys a healthy and active life.
Glad they finally made a diagnosis Lizzie... now you can start working on the treatment.
BTW, in Australia we include an A in the spelling - haemochromatosis.
There is an Australian support society:
http://www.haemochromatosis.org.au
The link in my post above contradicts this information, which is good for you Lizzie:
Currently, there is no specific diet for haemochromatosis but it is accepted that people with this disorder do not enhance iron uptake out of their diet.
- Do not drink alcohol with meals. (If fibrosis or cirrhosis present avoid alcohol altogether)
- Eat less red meat, two or three meat meals per week is ok!
- Eat more fish, chicken and vegetarian meals.
- Do not take supplements of iron or Vitamin C.
- It is suggested that you eat a varied diet.
- If you eat 3 meals a day and don't skip meals then supplementation of anything should not be necessary.
- Common sense applies, do adequate exercise, rest, and eat a varied diet. It appears that as you get older it takes more work and effort to keep yourself fit.
Have you been a big meat eater Lizzie?
Depends on the model purchased... the more you pay, the quieter they get.
thanks for that ... been crusining the net most of yesterday afternoon reading. although the problem has been around a long time, there is still relatively little information.
i know that one doesn't "have" to change their diet - but might as well hit it from both angles, and eat healthier at the same time. i'm wanting to find out more about the diet aspect and it can't help to cut back on some things. apparently red wine is okay as long as there is no liver damage.
ww - i'm not a big meat eater, probably have meat in the dinner meal 5 days a week but that includes chicken and fish. made homemade hamburgers for the family last night - but mine had no meat pattie on it ... just wasn't the same with double egg
what really surprises me is that there is no standard "compulsary" test for this abnormality - and how undiagnosed it goes.
according to research, 1 in 200 people have the full condition, and 1 in 9 are carriers ... with the majority being from north european descent - and the majority undiagnosed and hence untreated, as doc's treat the symptons rather than find out the cause.
with concern about an aging population, and the increase in medical costs, i'm stunned that it's not a run of the mill test. it is just a standard blood test where they check iron and ferritim levels - and look for the dna marker.
amongst other things, if left untreated, asides from the ongoing early health problems of fatigue, headaches, lower immune system etc - heamochromatosis causes arthritis, type2 diabetes, liver and pancreatic cancer, dementia, heart disease and a host of other problems - all of which are showing an increase in society. and the plus side would be that there would be a marked increase in blood donations!
maybe this is supposed to be my "life purpose" bandwagon ...
according to research, 1 in 200 people have the full condition, and 1 in 9 are carriers ... with the majority being from north european descent - and the majority undiagnosed and hence untreated, as doc's treat the symptons rather than find out the cause.
with concern about an aging population, and the increase in medical costs, i'm stunned that it's not a run of the mill test. it is just a standard blood test where they check iron and ferritim levels - and look for the dna marker.
amongst other things, if left untreated, asides from the ongoing early health problems of fatigue, headaches, lower immune system etc - heamochromatosis causes arthritis, type2 diabetes, liver and pancreatic cancer, dementia, heart disease and a host of other problems - all of which are showing an increase in society. and the plus side would be that there would be a marked increase in blood donations!
maybe this is supposed to be my "life purpose" bandwagon ...
Lizzie, have you been referred to a Hepatologist? Have you had further tests to check your liver has not been adversely affected? Has any one else in your family been diagnosed or died of liver failure in the past? Everyone in your family should be tested to see if they have Haemochromatosis as well. Although you may not like blood tests, blood donations are an effective way of treating this condition.
The positive side of a diagnosis is there are people who are diagnosed only when they go in to liver failure and need an urgernt liver transplant, or unfortunatly die.
The positive side of a diagnosis is there are people who are diagnosed only when they go in to liver failure and need an urgernt liver transplant, or unfortunatly die.
my doc's is waiting for my dna tests to come back to confirm ... i find out next week but she is pretty sure that's what i have given the identical list of symptons that i gave before i even knew about the condition, and the initial results.
i've just been reading the heamochromatosis forum about other people's experiences and now i'm realy scared.
i know i have to have the blood removed but i am a person who even giving a blood test is violently trying not to throw up, pass out and squirm out of the chair ... to have to sit for half an hour plus, while they try and drain blood from unco-operative veins is scaring the **** out of me. and to have to do it twice a week - i am so scared! I just don't "do" blood at all ... and then the thought of having to get my 6yrold in for blood tests, when she freaks at a paper cut is a horrible horrible thing for a mother to contemplate.
i do notice that on the contact list there is someone from my area, so i might give them a call later - when i stop sobbing.
i've just been reading the heamochromatosis forum about other people's experiences and now i'm realy scared.
i know i have to have the blood removed but i am a person who even giving a blood test is violently trying not to throw up, pass out and squirm out of the chair ... to have to sit for half an hour plus, while they try and drain blood from unco-operative veins is scaring the **** out of me. and to have to do it twice a week - i am so scared! I just don't "do" blood at all ... and then the thought of having to get my 6yrold in for blood tests, when she freaks at a paper cut is a horrible horrible thing for a mother to contemplate.
i do notice that on the contact list there is someone from my area, so i might give them a call later - when i stop sobbing.
Oh Lizzie, you poor thing. Now ring a friend and go get a hug and have a cuppa, someone who is going to be sympathetic but give you a boost as well.
Try not to be scared, although I hear where you are coming from, I have dreadful veins too and dread blood tests to, let alone anthing like donating blood.
Remember regardless of what you read or are told, you are an individual and your treatment plan may differ from others, If you do not have any liver damage or your LFTs are not to bad, then you may a rare person who does not need to donate the blood.
Go to a Hepatologist.
Try not to be scared, although I hear where you are coming from, I have dreadful veins too and dread blood tests to, let alone anthing like donating blood.
Remember regardless of what you read or are told, you are an individual and your treatment plan may differ from others, If you do not have any liver damage or your LFTs are not to bad, then you may a rare person who does not need to donate the blood.
Go to a Hepatologist.
