Haemoglobin and Ferritin through the floor - tablets not working

[cantdecidewhichisworst]

In 2020 I had a gastric bypass and lost 13 stone. I knew at the time I would need to take vitamin supplements and B12 injections for life which I have been religious about maintaining. I mention this as it's probably relevant as I can't intake enough food to hit vitamin & mineral levels through food alone.

In 2022, I suffered a late term miscarriage that led to my ferritin going down to 3 and haemoglobin to 87g/l. I was hospitalised due to the significant blood loss and given 2 iron transfusions before discharge to get my levels back up and GP then prescribed iron tablets to take twice daily. I have been careful to avoid caffeine for an hour each side of taking the tablets and always take them with orange juice as advised.

Since then, my levels have always been around 5 for ferritin (once got up to 8) and 90g/l (sometimes 100) for haemoglobin.

I feel like utter death. I am so so bone tired and could sleep 12 hours a night and still not feel rested. I have palpitations regularly and aching bones in my lower legs all the time.

I work full time and have 2 adopted children with lots of additional needs and my brain just doesn't work at the capacity needed to keep up with everything I need to.

The Doctor refuses to do anything other than try different types of iron supplements- I've had 6 in the last 2 years but my body just doesn't seem to absorb them.

I have paid privately for 2 iron infusions that worked to raise my levels temporarily (about 2 months) but at £650 each I can't afford them as regularly as I'd need to keep a decent level.

Is there any guidelines or recommendations regarding iron levels like this to get an infusion on the NHS that I can show him? I have an appointment next week and I'm desperate to sort something and not be fobbed off again.

Any other recommendations to get levels up gladly received- I'm desperate!

Have you ever been tested for coeliacs disease? It causes an inability to absorb nutrients and vitamin, low iron is a classic symptom of it even when supplementing. It can be silent coeliac and not have the typical symptoms of digestive issues.

That's weird. I had one iron infusion once. Ferritin was 8 before and 180 after. From just the one infusion. Does it not have that effect for everyone? Or did your ferritin also go very high after infusion but for some reason your body loses it all again very quickly?

What I mean is, if you are losing the iron again very quickly post infusion, how are you Losing it? Are you bleeding very very heavily every month?

Thanks for your reply. Yes, after the infusion my ferritin level does shoot up and then it just seems to deplete back down over 2-3 months to around 5.

I would say my periods are on the heavier side of normal but always have been. Nothing that you would think would be abnormally heavy.

Interesting- no I haven't been tested for coeliacs but I will request it at my next test. I'm happy to try anything at this point.

Absolutely worth checking for. Do you by chance have any digestive issues, lower or upper? Headaches? Skin conditions? Or any other auto immune disease, diabetes etc (all these connected to coeliacs)

Okay, so you are saying that the infusions work really well but then you lose all the iron again quickly? Since you can't explain it with abnormally heavy periods, I'd be going back to the GP and asking them to find out where you are losing the blood from.
I am not aware of other mechanisms for losing iron other than blood loss, but I am not an expert.
Coeliac disease or similar would affect your absorption of new iron from your diet, but would not explain your levels plummeting after an infusion.

Have you had a FIT test or any other bowel tests to check you’re not losing blood that way?

Would you consider the pill or other medication to reduce the length/heaviness of your periods to see if that makes a difference?

@Nogodsnomasters I limit my dairy intake as it makes me very, very bloated and gassy.

I do have chronic diarrhoea which I've generally put down to my gastric bypass as it started at the same time. I don't have any skin issues or anything like that.

Only other thing of note apart from the crushing fatigue is my restless legs are an absolute nightmare in the evenings and my lower legs ache all the time.

Hi there- I do take the mini pill (cerelle since 2022) which has regulated my periods (I have PCOS) and I also take tranexemic acid on days 2 & 3 of my period to help with the blood loss.

I've had a look at the NICE guidance and it's not clear what the criteria for iron infusion is, but hopefully something here is helpful. I do know one recovered anorexic who receives NHS iron infusions.

cks.nice.org.uk/topics/anaemia-iron-deficiency/diagnosis/confirmed-deficiency/

cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/#treatment

You poor thing to have such low ferritin, I been there 3.7 and was awful.

Press the Dr's, you deserve to have this fixed

But have you had the FIT test OP? That's really important.

It’s better to take iron tablets every other day for better absorption.

https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00463-7/fulltext#:~:text=In%20general%20agreement%20with%20previous,incidence%20of%20gastrointestinal%20side%20effects.

How often are you having b12 injections and folic acid?

Bleeding in the bowel is a major cause of blood loss and if you have bowel disease that will reduce your ability to absorb iron. I was anemic for years and felt like you do but eventually got an iron transfusion and because my ulcerative colitis is under control my iron levels have remained good.
You need to do a FIT test. One GP I saw did tell me my UC wouldn’t cause anemia thankfully the IBD nurse knew what was what!

Just to say it is better to see a haematologist, try to get referred if you can…. There are different types of anaemia and you need the underlying issue to be addressed.

If your folate and B12 is low then this might be useful to read:

my.clevelandclinic.org/health/diseases/23017-macrocytic-anemia

Okay you have chronic diarrhea, low iron and an intolerance to dairy - these are all coeliacs symptoms. You definitely need a FIT test and coeliacs screening test.

Thank you so much everyone. I will ask next Friday about a FIT test.

I really appreciate all the advice- it's really hard to advocate for myself at times especially when mage to feel like it's "just one of those things and not that bad".

Will also start taking the iron every other day to see if that helps.

I have B12 injections every 3 months and I take folic acid every day.

Just noticed on my blood results that my serum calcium level is also low at 2.12 mmol/l despite me taking 2x adcal D3 tablets a day.

Hope that you get it sorted ! It is awful being anaemic all the time. I was badly anaemic this year so I know how you feel.Also I’m sure you know already but dont have tea and coffee close to taking the iron tabs