Anaemia not improved after five months of iron tablets, what might they do now?

[Yourinmyspot]

I’ve been under heamotology since last May for low iron levels. I had a lot of different blood tests and even a bone marrow biopsy in September. They couldn’t find anything and put it down to the medication I’m on.

I started taking 210mg of ferrous Fumerate daily at the end of October and had my blood repeated at the end of December. They were still low with a HB 97, Ferritin 21.6 and transferrin saturation of 13%. They said to carry on with the iron tablets.

i had my bloods done again this week and they have got worse not better. HB is 99, ferritin 12.3 and transferrin saturation of 8%.

I have got an appointment next week to discuss my results but can’t understand why it hasn’t improved I’ve taken the iron tablets as I should and I’m not bleeding from anywhere. I suppose they will carry on with the iron tablets.

Are you taking them with food / orange juice to aid absorption.

I have always found tablets take a long time to make an impact.

Can you try liquid iron sachets?

Yes I’ve been taking them like that. I had my telephone appointment this afternoon and they are going to give me an iron infusion.

The most anyone can absorb from the tablets is 3-5% and many of us absorb 0% (you and me included). They will likely look at IV iron transfusion to get your iron levels up while exploring what the root cause might be.

Pernicious anaemia / functional B12 deficiency? Have you had Methylmalonic Acid (MMA) and Homocysteine tested?

The test results in the OP show iron deficiency not B12.

Iron is absorbed much more effectively by taking supplements every other day, rather than daily.

It’s the latest guidance after recent studies. Loads of new info available on it if you’d like to Google.

Yes, I know this. ⬆️
Functional B12 deficiency / pernicious anaemia will cause iron deficiency not to respond to oral supplementation, and I am guessing they may be dealing with this by arranging an iron infusion.

This is how they found out my mum was coeliac. She needed iron transfusion and then they also did a camera down the throat and found it that way (they did the blood test and came back fine)

Now shes gluten free the iron has been fine

My B12 is fine, they have done lots of other blood tests and it’s iron deficiency. Most likely due to some medication I’m on.

I get that, I’m just saying you can have normal serum B12 levels and be functionally deficient in B12 (ie your body cannot use it). So if they are measuring total B12, the result might well look fine. But if they don’t use the other tests to check for whether your body can use the B12 it’s got, they won’t be able to rule that out.

Functional vitamin B12 deficiency can directly cause low iron that doesn’t respond to oral iron supplements. This often happens because B12 deficiency causes ineffective erythropoiesis (poor red blood cell production), which masks the true state of your iron levels, or because underlying issues prevent the absorption of both nutrients.

Methylmalonic Acid (MMA) and Homocysteine (tHcy) tests - that would check if your body can use your B12 - are not routinely ordered due to high cost or limited availability.

Anyway, I’m not a doctor or a scientist and I will stop banging on about this now. I just would encourage you to query functional B12 deficiency as being a potential underlying cause of your persistent low iron if your medical team has not ruled this out already.

Wishing you all the best, OP, and I hope they can make you feel loads better soon. 💐

Thank you for explaining it so well, it’s something I can ask them as I’m not sure exactly what tests they have done but to be fair they have been very thorough. Just waiting to hear about my iron infusion.

That's how i was diagnosed as coeliac too. I was constantly anaemic in my early 20s despite taking iron tables with orange juice, avoiding tea etc., never had a problem after going gluten free

They phoned me this morning I’m having my infusion on Tuesday afternoon so that’s good.