Hello, I think the first time I have asked a medical question but interested to hear your views. Its about my wife, and her diagnosed low iron levels.

First comment, we live in CH, and as there’s no NHS, any opportunity to perform a majorly unnecessary and vastly expensive intervention is grabbed with hand rubbing glee by the various private HC suppliers. We tend to be a little wary of major recommendations.

A year ago, my missus was just dog tired. Knackered, unusually wiped out etc etc. Went to docs, they did some tests, and diagnosed very low iron levels (wife tells me the level was ‘3’ – 3 of what we do not know). We were pleased that that was all they found. Phew.

Diet changes didn’t help, so they recommended Iron infusions. 2 months after the first infusion her levels went up to ’30’, and after 2nd up to ’36’. Again, 36 turnips? 36kg iron per leg? Who knows 🙂

Dr wants to see levels of ’50’, and is disappointed that after 2 infusions things ar not better. Dr now wants investigative colonoscopies and perhaps other serious diagnostic interventions, to check for intestinal related potential causes of this inability to absorb iron, or causes of levels not increasing after infusion.

This is where I have questions – she is getting infusions, into the bloodstream, so surely the gut has bugger all to do with how much she can absorb? Ulcers, heavy periods, & other issues are not present.

She definitely feels a heck of a lot better after the infusions, noticeably so.

Just wondering if there are any opinions on
A) why the levels might not be rising to ’50’
B) are the deeper, apparently disconnected, diagnostics needed or are they doing a bit of $$ hand rubbing medicalisation?

We will go and talk to them again, together, but would like to hear any thoughts.

Ta muchly.

My dad had this amongst other things for about 10years

Dad is a confirmed coeliac now. And switching to a coeliac diet has meant his gut can absorb nutrients from his food as oppose to it just passing through

Sister in law had low iron for years – she has been diagnosed with croens disease.

Many things it could be how ever in both cases I site I will say it took 2-3 years to get to the bottom of. And involved much of what your doc wants to do to get a diagnosis. I understand your frustration its caused us alot of pain and frustration over the years.

I appreciate these are probably not tales you want to hear but my point is just persevere with the tests they may be clutching at straws seemingly but I believe theres a hierarchy to follow and you start with the easy stuff first before looking at more serious things.

You say ulcers and other issues are not present – has she already had some investigations/tests to check for any signs of gastrointestinal bleeding – stool sample for example?

Don’t won’t to scaremonger (and IANAD) but a friend who had similar had a lymphoma

One of my best mates had worryingly low iron levels, Doctors thought cancer, had all the scans, clear, turns out it was Coeliac. Looks much better now after 6 months w/o the gluten

Hmm, OK, thanks for that info.

Yes, there have been other non-invasive tests that were negative.

Sounds like it might be worthwhile to investigate further. Sheesh, lets keep calm and assume there is not escalation of either diagnosed issues or medicalisation.

My wife has had extremely low iron levels. Couple of things we’ve read about/discovered.

When taking iron pills, they say take them with a glass of orange juice for the vitamin C to help absorbtion. With my wife that wasn’t enough and her levels didn’t go up. So we bought some of those mega dose vitamin C pills from the supermarket and the iron pills then started working. Maybe some people need more vitamin C to absorb than others, dunno. Cheap and harmless thing to try anyway.

Also – my wife takes a lot of ibuprofen for headaches. This can cause enough stomach bleeding to affect iron levels.

Just to follow on from molgrips excellent post … I understand that a four hour gap must be left between iron and other medications including vitamins and minerals. Some folk have trouble taking iron supplements and there are gentle ones, or even heme supplements. Eating liver weekly?

We were told not to take iron pills with coffee and for some reason eggs. No idea why eggs but there you go.

My first guess on reading the title was coeliac. It sounds like the tests the doc wants to run are those for coeliac.

My wife was recently diagnosed with it, my mum’s a doc and this is the classic sign that leads to investigation – stubbornly low iron levels. It is a PITA being diagnosed, but much better than the variety of issues that the low iron and other symptoms were causing.

When one is coeliac is it just a case of no gluten?

Should be fairly easy to try out? Especially if one has iDieted in the past.

Yes, get the tests done.
Speaking from personal experience, once you find and treat the underlying condition (most likely some GI issue), the iron levels will sort themselves out.

The coeliac test is pretty unreliable, so shouldn’t be taken as gospel if it comes through negative.

However, there’s nothing stopping you adjusting her diet for a bit to see if it has any effect.

I wouldn’t panic about the worst case scenarios – it’s much, much more likely to be something else.

Another doc here… and some good stuff above…

Investigation partly depends on her age. If she is over 50 one would be a bit more aggressive.

What the number means depends on what it is, could be Iron or Ferritin levels. And local normal ranges vary… a lot…

To give more advice I’d need to know which it is. Also her Haemoglobin levels, and preferably her MCV and RDW.

If she hasn’t yet had upper GI endoscopy She should have at least had bloods for tissue transglutaminase, and stool samples for Calprotectin, Helicobacter, and FIT or FOB depending on what is done locally. I’d be expecting her to have upper GI endoscopy if these give no clue…

Iron deficiency can be with too little iron taken in, too little iron absorbed or too much lost from upper or lower GI or other bleeding.

Need more info to say more…

When one is coeliac is it just a case of no gluten?

Yep – basically.

The coeliac test is pretty unreliable, so shouldn’t be taken as gospel if it comes through negative

Blood test yes – confirmation by colonoscopy/upper endoscopy was recently described to us by my daughters consultant as ‘gold standard’

Hers came back negative – not coeliac, just intolerant to Gluten.
She has had issues with iron levels in the past.
We were told to give her kids multivits with iron and lots of fruit to help absorption.

It would make sense if the tests they have advised are ‘gold standard’, it is Switzerland after all. Bring out the maching that goes “Ping!” 🙂

OK, really appreciate the input, also from actual internet Drs, although I have to admit to being slightly miffed that our very own media sensaation Dr. Hillary, sorry Dr. P, is not commenting yet 😉

Can someone else let my good lady know that chocolate croissants might be off the menu for a while? Me and kids might go a away for a few days whilst that news is conveyed…

Blood test yes – confirmation by colonoscopy/upper endoscopy was recently described to us by my daughters consultant as ‘gold standard’

Oh, absolutely. But I think OP’s missus is trying to avoid taking her sachet of picolax unless it’s completely necessary.

Bugger all information from me other than a freind having low Iron through blood donation 2 month testing and over-training and Spinach and Mango smoothies kicked her levels back up, easy way to boost the intake.

Months of iron tablets did nothing for my ferritin levels. Only got normal iron levels when gluten free.

Please encourage her not to go gluten free until you have had the tests… at least the TTG and endoscopy if they are heading in that direction. So much easier to interpret and get a clear yes or no if still taking gluten…

‘Best practice’ in Uk might involve the following that explore potential reasons for either not absorbing iron or losing it.
Establish:
1. If premenopausal – are periods heavy – y/n – likely source of blood loss
2. Symptoms of coeliac disease – bloating, diarrhoea? Blood test
3. Family history of gastrointestinal or renal malignant/ cancer – cancer is rare in those less that 50 unless specific cancer causing genes are being passed around the family.
4. Check urine for bloodless – dip stick test – looking for cancer kidney etc

Check a few other blood tests to see if other things are also deficient

Then if nothing stands out it is usual to consider

1. Colonoscopy – look for cancer
2. Upper gastrointestinal endoscopy – with biopsy (better test for coeliac)

I’m surprised that she has not been referred sooner to be honest.
Chances are everything will be fine but I would want an explanation.

Check urine for bloodless – dip stick test

Those pee testing sticks are available on ebay/amazon iirc. We have some.