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!

Tell the GP to stop fucking around and send you off for a ferritin infusion at your local hospital. It will make you feel 1000 times better.

If they refuse then ask for another GP to give a second opinion.

That's awful they didn't take ift seriously. I hope you keep fighting your corner. It's no quality of life... glad hospital fighting for you.

DH has an IBD. A couple of years ago his ferratin dropped to 9 after a flare up and he was given a ferratin/iron infusion. Last year it dropped again and 2 infusions were needed. He cant take iron supplements as they usually trigger a flare up so he is now tested every 3 months as part of his regular blood tests. As soon as it drops below range his IBD team arranges an infusion.
I'd have thought that your gp would be arranging an infusion asap to get your levels within range and then advise supplements.

The lowest my ferritin was 6 - honestly, I couldn't function. I was not anemic, but felt awful.
I take iron gluconate otc, one tablet a day (35 mg). I no longer have a prescription. My GP had prescribed ferrous sulfate, I took it and was ok with it, but these can definitely upset your stomach. My GP told me it's common and I should take it until menopause.
I take breaks when I go on vacation, but other than that, I just take an iron tablet every day. I don't worry about milk and other foods interfering, take a tablet in the morning with a bit of orange juice.

Unfortunately tale as old as time... men with low ferritin is an issue they treat seriously, women with low ferritin too common so treatment not same.

Men in Pain = priority let get you sorted!, women jn pain = period/menopause issues. Crack on. Do minimum possible and see to yourself.

My ferritin was 3.7 and I was having 2 migraines a week vomiting violently and still it wasn't serious enough to offer an infusion.

Just iron tablets. With no advice on how to take for maximum absorption. Had to research myself. After a month refused to prescribe more tablets and had to buy myself.

My ferritin was 2 earlier this year. My GP explained that in my area you have to go to a gastroenterologist to get an iron infusion because the most common cause apart from menstrual bleeding is bleeding in the GI tract. She offered to refer me but I knew I didn't need an endoscopy etc. because for me it had a definite cause (pregnancy and menstrual bleeding). I ended up going to the Cambridge Iron Clinic on my husband's work insurance. An infusion there is £830 if you have to pay yourself. I know it's really expensive but it's made a huge difference to my quality of life so it's worth doing if you can afford it (or have insurance). The doctor there also does B12 therapy. https://www.cambridgeironclinic.com/

He says you can get symptoms with ferritin under 50 and under 30 is absolute iron deficiency.

Because he's a man! women don't get this same level of care and treatment plan for the same problem. As seen here, on this thread, today!

Exactly. Before come back with "he has IBD" Gluten allergy is a form of IBD, vomiting twice weekly and chronic migraines not enough for intravenous treatment.

Bloods taken every 3 months to monitor too... such a difference in health care men vs women.

Try heme iron from the US. Five Arrows. Good you have someone bothering to investigate it because they need to at least to try to find the cause.

I've never been offered bloods every 3 months because I'm a menstruating woman who gets told its normal.

My FIL had UTIs frequently which was taken very seriously and his appointments were at the hospital. My mother had the same frequency of UTI but she was told to drink cranberry juice.

Same age. Different parts of the UK. Mum was diagnosed with kidney cancer in the end. After months and months of appointments. She's in her 70s and she was worried they'd call her a hypochondriac.

FIL was fine all along.

The difference between male and female care is appalling. 😔

He's on biologics. 40 mg a week. Anyone who is on these is monitored. Men, women, kids. It's taken 7 years of fighting to get him on the fucking things. He's been ill for 20+ years. He has zero bowel control, has diarrhoea at keast 8 times a day and shits blood every he has a bowel movement. Hope that's ill enough for you.
OP I genuinely hope you get the help and the answers you deserve.

I had low ferritin from 2014-2017. Nothing seemed to help until I got an ablation done. In that time my skin peeled off, my hair fell out. I was just so poorly. It took me about 3 years to fully recover and 4 years for my hair to come back in.

But feeling awful again and been referred to rheumatology after bloods.

How high did you get your ferritin after the ablation? I'm surprised the hair took so long to recover.

I wouldn't. It isn't approved for use in the UK, it's linked to cancer, and it's of questionable origin.

Not being approved for use doesn't bother me in the slightest. But where has it been linked to cancer?

Poor guy. Sorry he has it so rough. I hope he continues to get the help and support he needs.

Many women unfortunately don't get the level of support they deserve which is highlighted. We should be offered same treatments across board.

If your ferritin is low, should be same treatment across board. It makes you so unwell and ruins your quality of life.

Not DH or your fault though. It's just frustrating. Sorry as didn't realise he was so unwell 💐

IIRC there's research linked in the documentation where the EU rejected heme iron. It's online somewhere. It's a blood product - I'd certainly care where it came from and how safe it is. The US has a very poor reputation for allowing the sale of dodgy supplements.

. Maybe if he has complex needs it makes it different for him? Who knows.

I’m also T1. My GP noticed my low iron and sent me for an endoscopy (with biopsy plus genetic testing etc) which showed that I had already had damage caused by coeliac despite having had no real digestive issues.

Silent coeliac, my friends one too

Tbh your posts did hit a bit of a nerve. It's pretty much an invisible illness and very few people understan what he goes through on a daily basis. He's had to go through the mill for years to finally get this treatment that he's on. It was only when the immunosuppression drugs he had been on for over a decade deranged his liver and caused massive ulceration in his upper GI tract that they agreed to it.
So although it may seem that he's getting preferential treatment due to his sex/gender, it really hasn't been like that at all.

And fwiw j fully agree that patients should be treated fairly and equitably across the board. And I fully recognise that as females we are often fobbed off with "oh it's down to your periods/hormones/age." It's lazy and almost negligent imo.

GP’s are notoriously bad for missing Coeliac disease. Referral to gastroenterologist. You would need to eat gluten for a few weeks & then have an endoscopy to be 100% sure either way.

This.

I was found to have severe anaemia when pregnant with my first dc, the midwife said that she was surprised I’d been able to get out of bed in the morning. I’d felt dreadful and exhausted and struggled to do much for years but honestly felt that I was lazy and needed more sleep! I think all menstruating women should be tested on a regular basis and receive adequate treatment based on the results.