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Ongoing Iron Deficiency *update post 26*

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#1 *cough*

Posted 17 January 2013 - 11:42 AM

So I've been anemic for years. Have seen specialist in both public and private hospitals - lots of treatment, tried all the old wives tales etc, the only thing that really works is iron transfusions.

Edited by *cough*, 29 January 2013 - 10:42 AM.

#2 *cough*

Posted 17 January 2013 - 11:48 AM

and yes I do eat meat and take regular iron supplements.

#3 JustBeige

Posted 17 January 2013 - 11:57 AM

I cant comment on the causes, but just wanted to share a tip I was given years ago. (I get anemic after every period)

The tip I was given is to not have caffiene within at least 1hr each side of taking your iron and to take Vit C with it as it helps absorbtion.  

I never knew either of these until my sons therapist mentioned it!

I do hope you find some answers soon.

#4 PrincessPeach

Posted 17 January 2013 - 12:14 PM

Given my iron overload is caused by genetics, to me it seems a reasonable conclusion that your anemia is possibly caused by gentics.

As for help - supplements such as zinc & calcium prevent your body from absorbing iron (although you've probably been told this), so make sure you read the ingredients of all your vitamin supplements.

#5 *cough*

Posted 17 January 2013 - 12:18 PM

QUOTE (JustBeige @ 17/01/2013, 09:57 AM) <{POST_SNAPBACK}>
The tip I was given is to not have caffiene within at least 1hr each side of taking your iron and to take Vit C with it as it helps absorbtion.

Thanks - I do this and take 6 vitamin C per day, 2 at each meal.

QUOTE (PrincessPeach @ 17/01/2013, 10:14 AM) <{POST_SNAPBACK}>
As for help - supplements such as zinc & calcium prevent your body from absorbing iron (although you've probably been told this), so make sure you read the ingredients of all your vitamin supplements.

Thanks - I am also low in Vit D so I take 2 per day but not the calcium ones. Doc knows I am on those so hopefully there should be no interaction.

I know it could be something more serious but feeling exhausted all the time is not fun. I am too busy for this caper!

#6 MarsBarSlice

Posted 17 January 2013 - 12:21 PM

Sorry to interrupt this topic but something Princess Peach said has got my attention.  I am hypocalciumic and take a lot of extra calcium to try and fix it but am still always low.  I am now being tested for low iron as my symptoms are pointing in that direction.  If calcium prevents the body from absorbing iron, I'm in a bit of trouble.

#7 PrincessPeach

Posted 17 January 2013 - 12:25 PM

QUOTE (MarsBarSlice @ 17/01/2013, 12:21 PM) <{POST_SNAPBACK}>
Sorry to interrupt this topic but something Princess Peach said has got my attention.  I am hypocalciumic and take a lot of extra calcium to try and fix it but am still always low.  I am now being tested for low iron as my symptoms are pointing in that direction.  If calcium prevents the body from absorbing iron, I'm in a bit of trouble.

Sorry badly worded, if the supplements are taken together, if they are spaced out then it is fine.

Basically if you eat a steak for dinner & then take your calcium tablets shortly after, the calcium tablets will not allow your body to effectively absorb the iron in the steak. Great for me when i have too much of it floating around my body, not so good for anyone who is iron deficient.

#8 Genabee

Posted 17 January 2013 - 12:31 PM

Coeliac Disease? Often coeliac's have low iron and low vit. D....

#9 *cough*

Posted 17 January 2013 - 12:36 PM

QUOTE (Wizzlet @ 17/01/2013, 10:31 AM) <{POST_SNAPBACK}>
Coeliac Disease? Often coeliac's have low iron and low vit. D....

Nope not that either. Though I was initially diagnosed as coeliac. After many investigations it has been ruled out.

I thought I'd 'grown' out of it so was pretty shocked when he told me yesterday that my ferritin was down to 4. I am scared the specialist will want to do further investigations. However, having said that, this has been going on for 10 years - someone needs to work it out already!

#10 SplashingRainbows

Posted 17 January 2013 - 12:38 PM

I was thinking coeliac disease too - although that should have been picked up on an endoscopy.

Have you seen a Gastroenterologist or did someone else do you endoscopy? If you have one can you ask about trialling a gluten free diet? Can't hurt really if you've exhausted many other options.

Sorry if you've been there done that...

#11 SplashingRainbows

Posted 17 January 2013 - 12:41 PM

Just saw your update - must have been posting at the same time.

How was your cd diagnosed the first time? I have cd and have never heard of a diagnosis by endoscopy being overturned.

Was your iron better while you were gluten free by any chance? Since you said you thought you'd grown out of it.

#12 Bendigedig

Posted 17 January 2013 - 12:44 PM

what about other food intolerances - I have fructose intolerance (you can be tested via a breath test) and I have low iron stores (although I need re testing to see what level they are now).  Prior to diagnosis, my iron stores were 4 (acceptable range was 15 - 200), months of iron tablets, no change, then I did a month of a diet which is similar to the diet I am on now for my intolerance - my stores level jumped to 10. I am going to back and get re - tested to see if I am now in normal range. Prior to the food intolerance diagnosis, I wouldn't have said I have symptons to suggest I had something (I was tested due to DD having food issues). worth trying maybe?

#13 MarsBarSlice

Posted 17 January 2013 - 12:45 PM

Princess peach - thank you for that. I should probably start taking my tablets differently.  biggrin.gif

#14 *cough*

Posted 17 January 2013 - 12:46 PM


Edited by *cough*, 29 January 2013 - 10:41 AM.

#15 *cough*

Posted 17 January 2013 - 12:50 PM

The fructose intolerance sounds like a possibility. Also the test sounds easy! Does that mean you can't eat fruit?

I will ask the heam. I want to go to him having done my research etc so that I can be a bit pushy about getting some type of answer. I know that sounds demanding but as I said this has been 10 years and I have been tested for so many things.

#16 lynneyours

Posted 17 January 2013 - 12:56 PM

I will share the experience of my friend, BUT only do this on medical advice.  

She was VERY low in iron, and her Mum had a disorder where she had too much iron and had to donate blood every few weeks.

She ate red meat and eggs at every.single.meal.  Still low in iron.  On medical advice, she stopped all red meat and eggs to give her digestive system a rest, and on the advice of a naturopath, started taking Kelp supplements.  
Her iron level went back to normal, she now eats hardly any red meat and is always normal.

I haven't eaten red meat since I was 12 and very rarely took an iron supplement, and my iron was always great, until post-kids and super-heavy periods.   I'm now taking liquid iron in orange juice to try and get it up again.

#17 Iliketoflounce

Posted 17 January 2013 - 01:04 PM

I know how you feel I am anemic once again have you been tested for food intolrences? Some food intolerences can affect iron levels

#18 *cough*

Posted 17 January 2013 - 01:10 PM


Edited by *cough*, 29 January 2013 - 10:42 AM.

#19 PrincessPeach

Posted 17 January 2013 - 01:17 PM

Just found this from


Decreased intake or absorption  
Decreased intake or absorption can occur in diets that do not include heme iron, the iron in meat and shellfish. Heme iron is absorbed more efficiently than non-heme iron found in plants and dietary supplements. Other nutrients, however, such as vitamins C and B12, folate or zinc can facilitate sufficient non-heme iron absorption. Consuming certain foods and medications can interfere with the absorption of iron. These include dairy products, coffee, tea, chocolate, eggs, and fiber. Medication that inhibit iron absorption include antacids, proton pump inhibitors (to treat acid reflux) or calcium supplements. Diseases conditions can also limit iron absorption; this can happen as a result of insufficient stomach acid, lack of intrinsic factor (hormone needed to absorb vitamin B12), celiac disease, inflammatory conditions such as Crohn’s disease, and in autoimmune diseases and hormone imbalances.

It is american, but the info is still the same.

#20 Iliketoflounce

Posted 17 January 2013 - 01:44 PM

Go to your dr and ask to be sent for allergies (all the food allergies ect.)

I'm sure the allergist will be able to do the tests for you

Edited by Minnieme4me, 17 January 2013 - 01:45 PM.

#21 carriesshoes

Posted 17 January 2013 - 01:54 PM

Have they tested you for Thalasaemia?  I'm thalasaemic and it shows like my iron stores are low.  I need to have this taken into account when they do my iron counts.  In saying that though, I'm still very low in iron and take a supplement (it's actually one from a dispensary at hospital - so that it doesn't constipate me), and I take Vitamin D with it.

#22 beccaj

Posted 17 January 2013 - 02:02 PM

B12 and folate levels? What are the other iron levels like are they ok and just ferritin low or are they all low?

#23 Bendigedig

Posted 17 January 2013 - 06:36 PM

With the fructose intolerance, my gp referred to the hospital for fructose and actor intolerance testing. You have a baseline test (lactulose) then a few dys later a test for the intolerance. I had to o a special diet the day before, the th test is drink special liquid and breath to anag every 20 mins for 2 to 3 hours. Very simple. Not covered by medicate bit it cost me $60 a test. Well worth it. I was in Melbourne whn I had it done. It's fairly new test, maybe only been around a couple of years I think, so not sure if all gps would be aware of it.

Hopefully you have a few different things to try now.

#24 yummymummycakes

Posted 17 January 2013 - 06:47 PM

If you ever figure it out, pm me original.gif

I have suffered with undetectable iron levels and a ferratin level of 1. and this is with iron infusions every 6 months!

When I was pregnant I was on infusions of 500ml every week for 35 weeks. The best I could get then was 4 and 3 for ferratin.

Have now thrown in the towel on testing, I am over it all,

But good luck to you

#25 *cough*

Posted 18 January 2013 - 10:59 AM

Thanks for all the replies, sorry I was AWOL yesterday afternoon after posting.

QUOTE (carriesshoes @ 17/01/2013, 11:54 AM) <{POST_SNAPBACK}>
Have they tested you for Thalasaemia?

I'm not sure but I will ask - thanks.

QUOTE (beccaj @ 17/01/2013, 12:02 PM) <{POST_SNAPBACK}>
B12 and folate levels? What are the other iron levels like are they ok and just ferritin low or are they all low?

Fine, never really had a problem with these.

ETA remove personal info

Edited by *cough*, 29 January 2013 - 10:41 AM.

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