Iron overload??: Have a question. Ive had... - CLL Support

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Iron overload??

Cfarrar profile image
13 Replies

Have a question. Ive had abdominal pain for months now, they can't figure out why. I've been left with having to fast for 16 hrs a day in order to not have the abdominal pain nightly that is always followed by hot flash. Then within the last three months suffering from fatigue, everyday at 3pm i have to take nap. The GP ordered blood work and it appears I have an iron overload. The only suppliments I take is EGCG (green tea). Any one have this issue? My doctor is on vacation for a week so I can't ask her. Thanks for any insight!

IRON

40 - 150 mcg/dL

166

IRON, INTERPRETATIONSee below

IRON SATURATION

15.0 - 50.0 %

59.3

TIBC

245 - 400 mcg/dL

280

TRANSFERRIN

212 - 360 mg/dL

212

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Cfarrar profile image
Cfarrar
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13 Replies
lankisterguy profile image
lankisterguyVolunteer

The condition may be hemochromatosis -

mayoclinic.org/diseases-con...

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Hereditary hemochromatosis (he-moe-kroe-muh-TOE-sis) causes your body to absorb too much iron from the food you eat. Excess iron is stored in your organs, especially your liver, heart and pancreas. Too much iron can lead to life-threatening conditions, such as liver disease, heart problems and diabetes.

The genes that cause hemochromatosis are inherited, but only a minority of people who have the genes ever develop serious problems. Signs and symptoms of hereditary hemochromatosis usually appear in midlife.

Treatment includes regularly removing blood from your body. Because much of the body's iron is contained in red blood cells, this treatment lowers iron levels.

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Symptoms

Some people with hereditary hemochromatosis never have symptoms. Early signs and symptoms often overlap with those of other common conditions.

Signs and symptoms may include:

Joint pain

Abdominal pain

Fatigue

Weakness

Diabetes

Loss of sex drive

Impotence

Heart failure

Liver failure

Bronze or gray skin color

Memory fog

When signs and symptoms typically appear

Hereditary hemochromatosis is present at birth. But most people don't experience signs and symptoms until later in life — usually after the age of 40 in men and after age 60 in women. Women are more likely to develop symptoms after menopause, when they no longer lose iron with menstruation and pregnancy.

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When to see a doctor

See your doctor if you experience any of the signs and symptoms of hereditary hemochromatosis. If you have an immediate family member who has hemochromatosis, ask your doctor about genetic tests that can determine if you have inherited the gene that increases your risk of hemochromatosis.

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Len

HopeME profile image
HopeME in reply tolankisterguy

Hi Len:

I’d add a couple of comments about hemochromatosis. The condition can be worse if you inherit a gene from each of your parents. I have the condition but I only received a gene from my father, not my mother. Thus, I have a problem but it isn’t as bad as individuals who inherent the disease from both parents such as my father. He had both genes and as a result he needed constant phlebotomies in his late seventies and early eighties. It was never a problem for him before then. The other issue that can exacerbate the condition is blood transfusions. I received four units of blood three years ago and this increased my iron saturation. As you note, the only way to control the condition is with phlebotomies. I’ve had several and they tend to reduce iron saturation. Controlling the condition through diet is futile according to the specialist I saw. The question I never asked is why do transfusions tend to increase iron saturation? In any event, that is my two cents on hemochromatosis. My understanding it is a very common condition.

Best

Mark

Cfarrar profile image
Cfarrar in reply toHopeME

Thanks Mark!

JigFettler profile image
JigFettlerVolunteer in reply tolankisterguy

I would add, everyone by their 50s should have a random Ferritin checked.

Early Haemochromatosis is silent. Not symptomatic till damage occurs.Mine was found by chance! And after 4yrs of CLL and 6 cycles of FCR.

Had it not been for CLL, and FCR, it would not have been diagnosed.

Iron excess over time can cause serious issues.

Please, everyone, get a random Ferritin / Iron level check.

Jig

Cfarrar profile image
Cfarrar in reply toJigFettler

Thanks John!

JigFettler profile image
JigFettlerVolunteer

I am like you. 13q mutated and i do have inherited Haemochromatosis.

1. What is your Ferritin level?

The iron results above are not that raised.

Iron overload won't give symptoms till it damages tissue and for that it needs to very high for a long time.

Because of menstruation women present later. Menstruation is like venesection and Most cases are hidden.

2. Has your Doctor tested got Coeliac Disease? Gluten intolerance?

Of course other important causes for your symptoms exists and your Dr will investigate.

Jig

Cfarrar profile image
Cfarrar in reply toJigFettler

Thanks Jig, I’ll ask my doctor to check those things!

Cfarrar profile image
Cfarrar in reply toJigFettler

How was your discovered?

Shedman profile image
Shedman

I discovered my own egg allergy only when i was 46.This followed 10 weeks of a 6 food group (the full version) exclusion diet — where the exclusion diet is effectively recovery time, for the body to calm from whatever food intolerance factors have previously regularly been ingested and caused offence.. after that 8-10 week break, a very gradual process of reintroducing excluded foods occurs..

Much to my surprise, I was bent double in pain one day.. and it proved to be egg.

Have you had other aspects of gut health cause you problems previously?

For instance, I suffered intermittent travel sickness as a child [that would be the days I had egg for breakfast..] and suffered reflux (mostly invisible to me.. odd as that sounds) for years.. So I took PPI omeprazole drugs for some years, before stopping eggs; I no longer need the PPI now.

Fatigue can hit any of us.

If I were you, aside from avoiding all supplements that contain iron and, possibly eating more spinach [it tends to worsen iron uptake].. I’d seek to eliminate a few foods from my diet for a while.. try to look at patterns in your life that might give a clue, else could do worse than remove eggs, dairy, grains, beans, citrus..

A dietician can be helpful, but there is relevant information online — message me if you want tips or encouragement.. I lived mostly on meat and green veg for that phase.

Cfarrar profile image
Cfarrar in reply toShedman

Thank you! Yes, I keep looking up what to eat that’s low in iron. I’m learning so much about heme iron and non heme iron. I had no idea! Then what you eat with iron that will keep it from being absorbed. Fascinating stuff. I think the elimination is a good idea.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toCfarrar

You can use this post in reverse!

healthunlocked.com/cllsuppo...

:)

Cfarrar profile image
Cfarrar in reply toAussieNeil

Thanks I will! I read this post and thought to get my iron checked because of it, come to find out I’m on the opposite end 🙁

janvog profile image
janvog

I got the reverse problem. After two years on IMBRUVICA resulting in near normal CBC, the hematologist prescribed Folivane, an iron-mineral-vitamin because because of some slight increase in anemia.

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