Iron Overload

[Delwyn]

Hi everyone.
I have been having Transfusions every 2/3 weeks and now have Iron Overload. I would like to stop all my iron intake in the food I eat, and need especially to know which food absorbs iron from the body. I would appreciate any advice on this.
On another subject. The more I know of this illness I now realise that the drug Methetextrate may have been the cause of my MDS. I was given this for Rhuematoid Arthritis and later was so upset to find that it was highly toxic and a treatment for cancer, which I dont have. Had I had insight to all the drugs Ive been treated with over the last 15 years I would never taken any of them.
Some of the foods Ive found to absorb/inhibit iron are: Walnuts, Milk, coffee.
The foods high in Iron are: All meat, Poultry, Shellfish, fish, dark leafed vegetables, Calcium Supplements.
Would be interested in others who are finding relief from diets. Thanks in advance.
Delwyn.

[chris]

Hi Delwyn

Sorry to hear about your iron overload. I would suggest that, before you make any major changes to your diet to restrict your intake and absorption of iron,you check it out with your MDS specialist and, if they agree that dietary restriction of iron might help you, then do ask to speak to a nutritionist at the centre where you are being treated for your MDS. If you restrict a lot of foods high in iron you might be missing out on other vital nutrients so you do need to get expert advice.

Having listened to some of the AA MDSIF webinars, it seems to me that whether or not to treat iron overload with iron chelation drugs is controversial. You might want to go onto that site to see if you can find any webinars which address this issue. There is one coming up on 28th February (see link below). It is called something like "Everything you wanted to know about blood transfusions but were afraid to ask"! If you sign up for this, you are able to type in a question "live" so you might get the opportunity to put your question directly to the medical expert delivering the webinar.

https://live.blueskybroadcast.com/bsb/c ... 2&CAT=1422

What you say about methotrexate is very interesting. Lowering blood counts is listed as a known side effect of the drug and we know that chemotherapy for other cancers can trigger secondary MDS in some people but, as you say, you were not aware that it was being used as a cancer treatment- rather than to treat the symptoms of rheumatoid arthritis. This drug is used very commonly to treat Rheumatoid Arthritis and if it is proven to trigger MDS changes in the bone marrow (rather than "merely" lower blood counts while it is being used), then patients have the right to know and choose whether or not to take the drug.

I do hope you can find some information to help you.

best wishes

Chris

[Karen]

Hello Delwyn

My father also has high ferritin levels - however he has underlying Hemochromatosis as well as his MDS. At first his doctors were taking blood from him to remove the excess iron, but as he now requires regular transfusions (2/3 units every 3 weeks) they are not doing that any longer.

His ferritin levels are now very high, and this is going to be discussed at his next visit to Kings in a few weeks. I'm hoping that they have a chelation drug that he can take because I am naturally concerned about the impact of high iron levels. So far there hasn't been any mention of dietry changes as a means of dealing with the excess iron - to be honest I think that the regular transfusions are having more of an impact than the odd chop/steak.

It seems that a balance has to be struck between ensuring that he has enough red cells, but not too much iron.

My Dad has commented on the fact that it seems odd that he is producing too few red cells, but is absorbing too much iron at the same time.

Karen x

[chris]

Dear Delwyn and Karen

There is a booklet on this site which gives lots of infromation about iron overload - if you don't already have it:

http://www.mds-foundation.org/pdf/Anemi ... -16-11.pdf

It will be interesting to see what they are saying at King's regarding the benefits versus the side-effects of iron chelation. What they seem to be saying in the States is that, although these drugs do reduce the iron levels, they do not have enough evidence to show that they improve survival. It is also an issue on how long iron overload has to be present to start having the bad effects on the organs and tissues - simply because in a very elderly person, this might not be the main issue I suppose.

Karen raises an interesting point. The dietary impact may pale into insignificance as compared with the transfusions so you do need to check this out before you deny yourself anything, Delwyn!!

It certainly does not seem a straightforward decision so you will need to gather all the information you can from your medical supporters.

Let us all know what is said, Karen.

Best wishes


Chris

[janetstanford]

Hello
Delwyn and Karen

iron overload /ferritain i have this again due to blood transfusions i have irradiated blood this is done to it because of antibodies ...some suffer from overload and others do not..and please remember what applies to one does not applie to the other we are all the same but different
i have been taking Exjade for 3 years now when i first started my Ferritin level was 6000+ very high last few months has leveled to 1800 ish ...i started on 1gm per day and has increased to 2 gms i dilute mine in apple or orange fruit juice (vitc) the amount of Exjade is prescribe by weight....
there are four drugs i know of for this condition and some can be taken to aid the other depending on how high count and or drug is working
normal Ferritain levels are 200-400 elevated if you smoke how much i do not know ...
the iron you get in foods is different to that in transfusions
the main issue with iron overload is the possible harm to other organs in the body hence the need to remove it and it can cause tirerdness aches ect ...i have had a couple of MRI scans to ensure no damage
a book which you can get from Sophie does have a section on foods we who have iron overload should eat as this may help
I hope this has helped if you have any questions please ask i may be able to help
but please remember this is my experience
do take care Janet

[Karen]

Hello
Delwyn and Karen

iron overload /ferritain i have this again due to blood transfusions i have irradiated blood this is done to it because of antibodies ...some suffer from overload and others do not..and please remember what applies to one does not applie to the other we are all the same but different
i have been taking Exjade for 3 years now when i first started my Ferritin level was 6000+ very high last few months has leveled to 1800 ish ...i started on 1gm per day and has increased to 2 gms i dilute mine in apple or orange fruit juice (vitc) the amount of Exjade is prescribe by weight....
there are four drugs i know of for this condition and some can be taken to aid the other depending on how high count and or drug is working
normal Ferritain levels are 200-400 elevated if you smoke how much i do not know ...
the iron you get in foods is different to that in transfusions
the main issue with iron overload is the possible harm to other organs in the body hence the need to remove it and it can cause tirerdness aches ect ...i have had a couple of MRI scans to ensure no damage
a book which you can get from Sophie does have a section on foods we who have iron overload should eat as this may help
I hope this has helped if you have any questions please ask i may be able to help
but please remember this is my experience
do take care Janet

Hello Janet

Thanks for the info.

Can I ask - do you experience any side effects with the medication that you are taking for your iron overload?

Karen x

[janetstanford]

Hi
Karen
side effects as with any meds there are a few ...i did not have any untill it was increased to 1.5gms per day in june2010... i ate a Macdonalds within 2 hrs i vomited ( i know not real food expect bloods low at the time needed carbs ) over the next couple of months i noticed i had more wind felt quite painful similar to that after an operation i started to take antacid when i needed i spent new years of 2010 being sick i had been out for a meal and had eaten beef not something i eat ...i believe after a discussion with the doctor that this may be a reaction to the meds and the foods i had eaten (heavy on the stomach ) ....i learnt to control it simply by not eating any of those mentioned and cut out the odd take away i ate ....does not effect me now at all ....so nothing major and sorry if i have made you feel yuk hope i did not go into much detail

but other than that all is fine still taking it

take care Janet

[meerkat]

Hi all

I discussed iron absorption from food when I saw my professor earlier this month. He said the amount of iron absorbed from food like liver or spring greens is negligible, compared with the quantity of iron in a bag of blood. He told me to eat what I want and enjoy it. So I will. He also said that even when the ferritin levels are high, the body will absorb iron when you are anaemic. So physiological self regulation is dependent on haemoglobin levels, not on ferritin levels, which I thought was quite interesting.

Bye for now

[Karen]

Hi Janet and Meercat

Thanks for your responses.

Janet - sorry to hear that you had a bad response with the meds, and it wasn't TMI at all. It sounds horrible, but it seems that you have devised a way to manage it, which is good. Dad is not any meds as yet for his iron overload, but I expect he will need to be soon.

Meercat - that was very interesting, thank you. I had no idea that it was the HB levels that played a part rather than ferritin levels.

Karen x

[janetstanford]

Hello Karen and Meerkat

Karen the sickness was only bad at the time easy enough to manage

Meerkat i am confused by what you have said this has never been mentioned to me in discussions about iron overload with the doctor hmmmm may have to ask

as we all know iron in food is digested then absorbed when needed ...iron in plasma is put into the vein and then carried to the organs...which means as it goes through these organs it leaves the iron...which can build up in the soft tissues and cause damage hence the meds and the scans... the overload has to be monitored as high levels over time may cause damage to the main organs those to watch are the heart and the liver ( i believe ) and also we have to remember overload may cause tiredness aches pains and headaches to name a few.....

as you know i am on exjade 2gms a day and had a heart scan a couple of weeks ago just had the results no overload in the heart and the amount in the liver has dropped by half since last scan 2 years ago ..doctor is very pleased with this as all is under control and at safe levels i am to continue on the exjade as he says it is working ex/well i am feeling very good and relieved about that at the moment

anyway Karen luck hope my posts have given you questions to ask the Doctor and i have been a help
hope to hear from you both soon take care Janet