Ferritin of 17 - what do I do? Also low B12? Does this point to coeliac? Help!

[Ferritinny]

It's been on the low side for years, but this is the lowest it has been. 17 ng/ml when the range is 16 to 154 at this lab.

The GP said maybe it dipped more if around period, but looking back I guess this sample was taken about midway through my cycle?

I have managed to get my folate up to 8.8 ng/ml from borderline low (years of readings at 4 and 5) from taking high dose methylfolate so quite pleased about this. However, my B12 is always between 200 to 400 despite taking a B complex - does this mean I can't absorb B12? Gp tested for pernicious anaemia antibodies and negative.

Coeliac antibodies were negative but GP also tested some genetic thing and I have 1 gene associated with coeliac out of 3 possibles.

GP thinks I should cut or dramatically reduce gluten as even if I don't actually have coeliac now I could develop it?

I struggle massively with fatigue which is my main issue, also regularly feel like my brain isn't working correctly and my nails are breaking at alarming rates. Which could all be related to the ferritin or a gluten problem?

I have an autoimmune disease already, type 1 diabetes which is well controlled with hba1c of 5.4. I also have hypothyroid (no thyroid antibodies, so not Hashimoto's) and TSH is always 1 or a bit less, but T3 and T4 are always a little low.

What would you do?

I don't know where to start!

Mines been as low as 4 in the past.

A ferritin on 17 wouldn't bother me because of that.

I'd follow your GPs advice as I wouldn't know what to advise. Hope it works out.

GP thinks I can try taking some iron on experimental basis, she mentioned taking it around the week of my period.

I just would like to have more energy! You must have felt absolutely awful at 4! Did yours dwindle slowly down to 4 over the years or was that out of the blue?

Sorry to say GPs are no experts on B12..low B12 can cause loads of health symptoms.
I uses to suffer 20 plus mouth ulcers a week.. BV every month.. fatigue..weak muscles. Disturbed vision.. insomnia.. the list goes on.
I have been SI b12 once a week for two years and all my symtoms have gone.. you need to take folic acid along with b12 for absorption. You can't overdose on b12.. anything your body doesn't need you pee out.

Following for advice. Im similar.

You need the folate to absorb the B12 so they tend to go hand in hand - I run at about a 4-6 for folate but it would be worth finding out your levels before your symptoms started to see if you have always had these levels or if they have dropped significantly for you as the ranges are vast as everyone runs slightly different

Look up the Iron Protocol UK on Facebook

Your ferritin is too low

I’m pretty certain you don’t “develop” coeliac disease. It’s an autoimmune condition that you’re born with but the symptoms fluctuate and can be worsened/“set off” in times of stress.

If you are suspected to be coeliac you shouldn’t stop eating gluten. You need to have the blood test, and as it tests for antibodies that are produced upon eating gluten, cutting it out reduces the antibodies and can give a false negative result.

Having one autoimmune condition also increases your chances of having another. I had low ferritin when I was diagnosed coeliac - you just struggle to absorb much of anything at a certain point. Mine was “ok” until my NQT year!

If you’re gluten sensitive you’ll likely struggle to absorb iron and b12. So knock gluten on the head completely. If you can’t get b12 injections through your Gp go to a private clinic where they should be affordable. Also b12 Facebook groups are a source of great information. Buy some ferrous sulphate for iron

Sorry totally missed that you’ve had the test - I would still see if you can have an endoscopy potentially because I had three tests before it came back positive and it was then confirmed by endoscopy. But I know that’s not an easy thing to get through the NHS and you may decide to just cut out gluten. It’s just good to know for certain as coeliac disease can predispose you to a bunch of other stuff.

I’m pretty certain you don’t “develop” coeliac disease. It’s an autoimmune condition that you’re born with but the symptoms fluctuate and can be worsened/“set off” in times of stress.

This isn't right. You're born with an underlying susceptibility, but no coeliac disease, then at some point, for some reason we haven't yet determined, a switch is flipped and now you're coeliac forever, whatever your stress levels.

Ferritin below 30 is absolute iron deficiency and it needs treatment.

You can't rule out coeliacs just because your antibodies were negative (it's one of those a positive is positive but has a high false negative rate) - they should do a biopsy to know for definite (and cutting out gluten will just give a incorrect result)

@Nopenopenopenopenopenope
I had a ferritin of 4 few years ago and felt like death, was given ferrous sulphate after kicking up a stink.
Currently awaiting an ablation on my womb to stop heavy periods, last few weeks ive been feeling awful again, had blood test and ferritin back down to 27. But nobody takes me seriously, and when my next period comes im gonna feel even worse. Have you ever known anybody to get iron infusion below 30? X

I felt so ill I could barely climb stairs.

I need infusions annually and it drops like a stone in between. No stomach or bowel issues and no coeliac. They never found a cause.

Yes - me!

The NICE guidelines changed in (I think) November 2021. Under 30 is absolute iron deficiency. If it doesn't respond well to iron supplements (I was on them for four torturous years) then iron infusion should be arranged.

I'm also awaiting an ablation, not too long if it's not cancelled this time. I've been messed about for 6 months. I've got tranexamic acid for the mean time but it doesn't help much. If surgery is cancelled again I'm going to need another infusion in the next few months.

I have b12 injections every 8 weeks and feel so much better a few days afterwards.

You can buy injectable B12 online from Germany and inject yourself OP. NICE guidelines say every other day injections for neurological symptoms until no further improvement. You will need 5mg of daily folic acid to go along with this amount of B12. Again this can be bought online. For all the B12 supplies including needles, syringes and the B12 itself you are looking at less than £1 per injection if you buy in lots of 100. It's the most cost effective way of doing it. It's perfectly safe too as you wee our what you don't need. The only thing I would say is that if you've never had a B12 injection before you should try to get your first one in a medical setting as there is a very tiny risk of an allergic reaction to, I think it's cobalt in the formulation. If you do manage to get treated by the NHS it will likely be one injection every 12 weeks which is not. Also if you've been taking supplements they will skew any blood results so the GP may well say there isn't an issue. B12 deficiency is treated appallingly in the UK. Your best bet is honestly to self treat.

Celiac disease is common in type 1s. You need toget tested if you think this is a possibility.

This is a good Facebook group for lots of info and a good B12 protocol to follow. There is a link between B12 and ferritin but I'm not deficient in ferritin so I'm not sure of the ins and outs of that side of it so might be worth joining the group. They are very knowledgeable. Admin have written research papers etc.

This is correct. You can develop it at any age.

My ferritin regularly dips to about 6 and no one seems to know why (have just been diagnosed with an autoimmune disease) but I know my other levels are ok. They stick me on ferrous fumerate and within a week, I get a bounce of energy and start feeling better. It needs a dose of 200mg but I think that you can get that over the counter now.

The WHO defines low ferritin as under 15 in adults, although this document from the Royal College of Physicians recognises that people can be symptomatic with a ferritin under 30.

Iron infusions remain hard to get, however, this document supports them in people who can’t tolerate/absorb oral iron.

https://www.rcpjournals.org/content/clinmedicine/21/2/107#:~:text=The%20WHO%20defines%20low%20ferritin,12%20%CE%BCg%2FL%20for%20children.&text=However%2C%20in%20clinical%20practice%2C%20when,L%2C%20ID%20can%20be%20ascertained.&text=Ferritin%20is%20an%20acute%2Dphase,in%20serum%20during%20chronic%20inflammation.

My ferritin is frequently 5ish. I just get prescribed the iron tablets that make me very very sick. (Even with all the vitamin C and other things!)

My body will not absorb iron. The GP doesn't give a hoot and says its very common for menstruating women. He tells me it's normal. And there's nothing he can do. I've spoken to two GPs about it.

I also have a neurologist at hospital who says it's actually very serious. So he's referred me on for more tests. But Ferritin etc isn't his "domain"

Something about GPs make them very blasé about low ferritin! If a bloke had low ferritin it would probably get taken more seriously

I have had an iron infusion pre covid. It made me feel okay for about 2 weeks and then my ferritin dropped back to the usual 5ish level.

I was gutted!

Hi, I developed gluten allergy during lockdown that inhibited my ability to absorb iron. I became low ferritin 3.7! Migraines were horrendous and I had no quality of life. Constant headaches and nausea.

Cut out gluten and felt better instantly.

Took 200mg ferrous sulfate 3x daily oncemptg stomach with glass of vitamin c(helps absorb iron) avoid coffee tea 2 hours before and after as inhibits absorption

Haven't been on iron tablets as regular but take one a day with vitamin c. I make sure diet rich in heme iron *not. Plant iron, it is a myth that it is absorbable duecto oxalates which inhibit absorption of iron, research it.

Look into these things, cut out gluten and hopefully you will be on mend. Iron deficiency is awful. Heal soon.