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!

Second what people are saying re how seriously Drs take women. I had bloods taken for fatigue and dizziness. Had to chase for results which flagged an appointment with the Dr was needed. When he rang he said I had anaemia and I needed to pick up a prescription for iron tablets. He was fully ready to end the convo there until I asked what my results were - Hb 10.7, ferritin 13. I asked what could be causing it. He asked if I was still having periods (I’m 55) when I said yes, he was like ‘it’s your periods’ . I told him I didn’t have heavy periods. But he insisted that anaemia is nearly always caused by periods in women. Eventually agreed to retest me in a month and take things from there. I was fuming!

@Pollyputhekettleon it took a while to recover properly but it went up to 100 by 2020z I don't get periods now but I forgot to ask the level at my last tests as the GP stunned me by telling me she was referring me.

Interestingly my dad had haemacromatosis which is when you produce too much iron, while for some reason I couldn't seem to keep it in my body. When I intially dropped to 25, the GP allowed me to try spatone, but a month later despite 2 sachets of spa tone daily, I'd dropped to 17 and the lab had started raising concerns.

Since I had covid for the first time last year I have felt dreadful. My skin is awful too and my autoimmune bloods raised concerns. I really hope I'm not going to loose my hair again as it left bald patches and it stressed me out,

Ugh that's awful. 100 should be high enough for hair to regrow usually.

Why would the GP be allowing you to try Spatone? Isn't that just extremely weak over the counter iron that you don't need anyone's permission to take?

Have you managed to get it properly investigated since?

Interesting thanks. I'll look into it. What surprises me is that it's available in Canada, which doesn't have the US reputation for not regulating.

Seriously. Go gluten free for a month, prioritise sleep, nutrition and take a high-quality supplement (not Floradix, it has gluten) and report back. There is a high chance you’ll feel a bajillion times better!

If not… you can rule out gluten intolerance.

Source: someone who had no idea she wasn’t just a bit sickly, anaemic and lazy but turns out it was gluten.

Ask to be tested for H.Pylori if not done so already.

I recommend heme iron to get your levels up (rather than usual supplements which are non heme), and consider self injecting B12

Good luck x

It’s really quite disgusting how long women have to push for simple treatment.
I have suffered from low iron, heavy periods and gut issues most of my adult life.
Over the last few years, my iron and ferritin dropped lower and lower. Last year, my ferritin dropped to 2. I could barely climb the stairs and when I did I had to sit down and would see stars, I was weak and shaky, had aura migraines and felt like shit. I pleaded for help and all the gp offered me were iron tablets which flared up my gut issues awfully.
In the end I pleaded for infusions and an ablation which I had last year.
I am still no nearer to finding out what causes my daily gut issues, despite endless tests (no coeliac disease), that’s another ongoing battle with the health professionals.

@Pollyputhekettleon it was to try and be kinder to my tummy and not cause constipation over the awful tablets. My body doesn't like them at all. I know my body and so does my GP surgery. I have quite a few issues but no one was listening to me about my heavy 9 day periods. As soon as I got the right GP she referred me to gynae.

Best advice! Literally my quality of life improved 100% in a month, 6 months I was back to usual self.

Ah ok so they were trying to help with the supplement tolerance but it was the root cause they were ignoring. They really need to invent more tolerable forms of iron for people. I don't understand why it should be so difficult.

17 is low, it’s irresponsible to suggest otherwise.

Not yet @Pollyputhekettleon I’m waiting on the four weeks being up. Can’t say I’m feeling loads better on the iron tablets. I am going to ask to be tested for coeliacs.

I went to this clinic too, he was really nice and so knowledgeable and understanding on the impact of low iron especially on women who are fobbed off constantly. I went in January after 2 years of trying and failing to increase my ferritin with oral iron, and no one willing to refer me for NHS infusion. I've felt so much better since, it's definitely worth it.

This. GPs are great but they are general practitioners. Nobody will advocate for your own health and well-being like you can. Ditching gluten for a month may seem like a massive ballache but (personal experience alert, your mileage may vary) the utter relief and amazement of finding out how good I could feel was astonishing.

I’d suspect there are a lot of people out there who could find out the same — or not, but it won’t hurt and could rule it out and you win either way because: improved health or pizza.

To be clear it’s the impact of gluten on some people’s people’s GI tracts that effs up absorption progressively. So getting supplemented is fab but eliminating the root cause is what’s potentially up for grabs here.

Anyway, I sound like a zealot so I’ll be off now to read some skincare threads

My ferritin is also 17 (.6).

According to Addenbrooke’s, a centre of medical excellence, the standard range 10.0 - 291.0.

My GP suggested I take ferrous sulphate anyway.

This thread caused me to check the NICE guidelines, so thank you for that, OP.

• “In all people, a serum ferritin level of less than 30 micrograms/L confirms a diagnosis of iron deficiency.”

Thank you for all the replies.

Alarmed to read the link between haem iron and cancer? So it's not available in EU?

I was vaguely aware of some sort of link between iron and cancer as high iron is inflammatory but didn't know it was because of the haem. Which is why I avoided taking iron supplements before when ferritin has been in the 20's or 30's and just hoped it would come up with diet - I eat lots of eggs! But it hasn't and now it's dipped into the teens I do need to get to the bottom of what is wrong.

So are non haem iron supplements the way to go then?

I cannot bear the idea of an endoscopy for coeliac biopsy. I have no faith in letting somebody else take care of my diabetes when I'm under sedation, they are notoriously bad at this and just let diabetics run far too high which terrifies me so much.

If it's an emergency that's one thing and no choice in the matter but this I think I will just have to go gluten free and see if it makes a difference.

I did not know this! My ferritin was recorded at 3 a few months ago (along with a low B9 rate which I can't remember the number of and a HB level of 8) at the most recent blood test my ferritin was 13 and I was told that's within normal range

No more irresponsible than asking for medical advice here from unqualifed people.

She has a GP but chose to come here to ask.

It can be low depending which lab ran the test and what range is being used. Some of the reference ranges say 11 and over is normal

This is what my anaemia was put down to despite what I said.

I've since had a positive FiT test and colonoscopy which showed a huge polyp which will need removing and checked to see if it's cancer.

There is nothing irresponsible with discussing deficiences and chronic conditions online.

It does not replace appointments with actual doctors. It is a discussion with knowledgeable people dealing with similar issues, who have a wealth of experience managing the conditions.

Also I actually mentioned the lab range in my opening post. 16 to 154.

Lab ranges vary according to the lab who took it. They aren't all the same.