After esophagectomy no longer storing iron from hemochromatosis, 6 years now.

[yourhoneyb]

I have a question, I had my esophagectomy Oct 31, 2013, prior to the surgery I also had a genetic disorder called hemochromatosis where I stored too my iron and had to have phlebotomy's every 3 months, 2 cups of blood/ 500ml in the end after being de-ironed. My last phlebotomy was June 2013, since my esophagectomy I no longer store iron, in fact I am borderline anemic. Has anyone else had this issue, does this seem normal and why the change as it is genetic and is never supposed to go away?? Just curious, I love the fact I don't have to go in for the phlebotomy's anymore, my veins are terrible especially after having the phlebotomys for decades

[strangetimes]

Ooh a silver lining . I can't rememberthe details but I 'm thinking it's something to do with taking PPI's which supress acid production which in turn affects how we break down and digest food .

Or the removal of part of the stom ach which also affects digestion ?

Sorry ,I'm no help ! Someone will be along soon who is ,I'm sure .

[Lynio]

It is normal for your iron store levels to be reduced following your surgery- I guess because your food intake is so different/reduced- you are physically unable to take the iron in in your food, and therefore your body will store less and may become depleted. My husband had a total gastrectomy in 2015- now his ferritin levels are low and he takes an iron supplement daily.

[monikaf]

Hi yourhoneyb,

I, too, have heridal hemotomachrosis. It was discovered 3 years ago because of elevated iron levels. Ferritin levels within the normal range, but transferrin was low resulting in transferrin saturation of 100%. It has obviously affected my liver, MRI showed shadows which are interpreted as stored iron. And liver enzymes were elevated. I had two phlebotomies. As to my liver function, it was tested before oesophagectomy in February 2018 and it was good.

After my operation my liver enzymes were no longer elevated and my GP told be that was probably due to blood loss during the operation. (I don't have any information by the surgeon.) But by now all three of them (GGT, ALT, AST) are elevated, my transferrin saturation is 94 %, ferritin still within the normal range.

My GP and my oncologist don't feel competent to decide if I need phlebotomies and the gastroenterologist is hesitant because of the normal ferritin level. I'd rather have one hoping that my liver gets rid of the iron. It seems hard to find a doctor specialized in this condition.

I did some research and came across this article:

ncbi.nlm.nih.gov/pmc/articl...

In chapter 'hemotomachrosis is a progressive disease' they say that:

'following iron depletion, and many patients will not demonstrate any evidence of iron reaccumulation after many years of observation.'

Perhaps this applies to you after your oesophagectomy? I'd check, however, if there isn't any other reason for hidden blood loss. I guess the gastroenterologist can do this.

[yourhoneyb in reply to monikaf]

When first diagnosed my iron level was at 1360 and had phlebotomy's every 3 days for 2 weeks then every month for 3 months to de-iron me, then I had phlebotomy's every 3 months for over 20 years, my iron would climb back up every time. My specialist tried to keep my levels below 50 to help prevent further damage to my liver. Amazingly it has not went back up in 6 years now and also still 6 yrs Cancer Free come Oct 31st. I was a zygot both parents carried hemochromatosis, oddly I have 9 brothers and sisters and only 4 of us require phlebotomy's and with my faternal twin brothers only one of them required the phlebotomy's.

I am really pleased I don't need them anymore but was concerned as to why and what would cause this. Thanks for all the responses.

[Fizzy35]

Don’t know if any help but do have an understanding of haemochromatosis as my husbands aunt and two of his cousins have but apparently he hasn’t

However he had the Ivor Lewis oesophageal Surgery in May and couldn’t tolerate iron tablets

Dieticians suggested we buy Spatone liquid iron in Apple flavour and it seems to be ok??

Maybe if this doesn’t help you would help another person

Best wishes for you

Fizzy35

[Bien-aimee in reply to Fizzy35]

The only iron tablet I could tolerate was ferrous fumarate and only one. Iron tablets should always be taken with a vitamin C tablet to aid absorption and avoid caffeine drinks for half an hour as it hinders absorption. Meat, green veg , dried apricots etc. are Good sources of iron, but depends how your eating is going.

[Bien-aimee]

Any surgery on the stomach- which an esophagectomy causes- I had a stomach pull up to create a tube - causes iron deficiency. Sounds like you have made history..