Possible B12 and Iron issues - GP not interested at all, what should I do?

[MoonDanceCafe]

I've had a long history with some chronic health issues which are ongoing and slowly getting worse.

Decades of period issues and digestive problems amongst many other issues.

Over ten years of visiting by gynaecologist and many hysteroscopies/polyp removals etc and being told it's all standard issues and some women naturally have heavy periods only to discover at the age of 50 it's endometriosis.

Over 10 years struggling with anaemia. GP would prescribe iron tablets, I'd suffer with more gut issues due to the iron supplements and GP would shrug and say little they can offer as alternatives. Discovered a year back when I signed up for Patient Access that my ferritin was below 5 for almost 8 years and they did little to help. I opted for a uterine ablation with my gynae, that was in 2022, during the pre-assessment they discovered the low iron and ferritin and arranged an iron infusion. That pushed my levels up to 'within NHS range'.

Even though my iron is now within range I still feel like crap. Daily gut issues (I've had colonoscopies, gastroscopes, stool a d blood tests and all ok) and nothing I try helps with these, I am exhausted all the time, sore tongue, hair loss, blurry vision, headaches, tinnitus which drives me insane etc. I never feel well, always below par.

Today, in desperation I went to my GP, with trepidations as she never appears interested in my woes. I explained my ongoing symptoms and showed her the pics (below) of my tongue and my thinning hair, she barely looked at them, told me all my recent bloods are ok and within range so nothing more she can suggest.

I have asked on some FB groups and it's been suggested that I may possibly have issues with my B12 and possibly still be low on iron. A NHS anaesthetist who has an interest in B12 issues was recommended several times. I contacted him with my latest bloods and he believes I could have issues and has advised some advanced blood tests. I asked the GP but she said I couldn't get these on the NHS and would need to pay privately. Once I mentioned I'd contacted this guy she lost all interest.

I'm so depressed, I have zero money atm as I gave up work last year to help care for my mum who has advanced Alzheimer's, carers allowance is a pittance and doesn't allow for such 'luxuries' as private testing.

What can I do - am I barking up the wrong tree? I'd stick it on my credit card (which I can't really afford to do) if I thought it would give me some quality of life back but I'm so afraid of being taken for a ride.

Has anyone had experience with B12 deficiency, what would you do if you were me?

Hi sorry you’re experiencing all of this and not feeling listened to aswell, it’s a horrible feeling. What are your current levels of B12 and iron? I don’t think I have any advice but just thinking it might be useful to share your blood results in case anyone comes along who might have some further insight.
What was your hair like before? Is that really unusual for your hair? Might help to show a before and after.
Also, I wonder if putting everything into chat GPT might help you to make sense of it all, and group together related symptoms and point you in the right direction? Obviously ChatGPT is not medically trained or anything like that but I find it fab for making sense of a collection of symptoms and also for organising it all in a way that is easy to present to GP, which in turn, makes the more like to listen

In your shoes I would change gp.

find a gp who will test for intrinsic factor as well as b12. These simple blood tests should be available on the NHS.

Are you on hrt? That’s a game-changer for many women.

Whatever you do, keep pushing. Good luck.

Thank you for your reply.

My bloods all came back as normal and within ranges

B12. 300. Range 197-771
Folate 3.3. GP says anything over 3 is ok
Ferritin. 61. Range 30-200
Full blood count all normal and within ranges

Tbh, my hair has been thin for so long due to the years if low iron. The only photos I have are around 30 when it was a lot thicker and before my periods started at 12 it was quite thick (I've added the photos) GP just isn't interested in my thinning hair at all.

I have asked Chatgpt and it does suggest nutritional deficiencies. I wonder if my years of gut issues and subsequent limited diet has contributed to this?

Thank you. I think I may need to start looking at different GP surgeries, I'm getting nowhere with this one.

I have tried hrt but it made the endo pain worse.

In same boat here OP.
Changing gp's sounds easier than it is, but yeah, go for it if you think it's possible.
I am so disgusted with the health care system. I can so identify with your assessment that too many doctors don't care, and yes, feed your signs and symptoms into ChatGPT.
The compilation of results from many sites will be more informative to you than what your gp is.
I have gynae problems and tinnitus too, and a gp that hasn't acted on the audiologist's recommendation that I receive an ENT specialist's appt.
The gp was the one that advised the hearing assessment, then failed to arrange an appt. that of course will take many months to actually get.
I put myself on B12 tabs, because someone on MN said that they had tinnitus due to a B12 deficiency.
Apparently yes, it is a thing, but so far hasn't helped with that, but it won't hurt either.
It's not a good thing to feel abandoned, neglected and forgotten by a profession that is there to help us, is it.
I hope you get the help you need OP, and again, I'm sorry for what you have been going through on your own, for far too long.

It is inexcusable, keep trying, and I hope you find a good gp soon.

I've been anaemic for 30 years, again GP couldn't care less even when it delayed an urgent surgery for one and a half years he was all - just keep taking the pills.
In the end I just had a meltdown and had an iron transfusion privately which cost £800.
I feel great now, my GP would rather I was disabled and off work for 18 months than refer me to have the iron transfusion on the NHS.
I've changed GP surgeries.

Thank you, I am so sorry you are in a similar situation it is beyond frustrating isn't it? I literally bawled when I got back to my car, it's the frustration of not being listened to yet feeling like crap every day.

Like you say, it really isn't easy to change surgeries, I live in a village not a twon or city and village and all the other surrounding villages have all had new large estates built on in the last 5 years and the area is flooded with new patients, each surgery has it's issues but I will try and hope someone may listen to me and help.

I am really confused about B12. On some of the support groups they say online B12 injections fully help yet other people say oral B12 can be ok? Maybe I should try the oral ones and see if I feel any benefit.

I hope you manage to get you issues sorted. Wishing you all the best.

That is simply dreadful. Why on earth do they allow us to struggle through life for so long?

B12 of 300 and ferritin of 61 are actually good levels OP. Better than the average woman (and I see a lot of these blood results!) I’m not sure what to suggest as you don’t qualify for IM injections with that B12 level. But if you want a boost, you could take oral.

I'm not saying that it is B12 issues, I suppose that I am grasping at straws in the hope it could be something 'fixable'. I feel so below par all the time with a myriad of symptoms yet no GP is able to pin point why I might possibly have these issues. None of my friends feel this poorly, there has to be something contributing to it?

Your B12 isn't low.

If it were low, you could buy super high dose B12 over the counter which is just as effective as the injections even for IF/pernicious anemia. People sometimes believe injections to be more effective because it's more "medical", but actually modern oral B12 is very effective. Don't supplement with this kind of super high dose B12 unless you know you have a deficiency or an IF deficiency as there may be some unknown side effects of oversupplementation. You can order your own blood tests from somewhere like Randox if you are not getting support from the NHS.

I buy high dose B12 instead of getting injections myself. It's cheap and works well. Sores and grip problems clear up right away, with dementia symptoms taking 3-6 months to resolve.

I'm sorry you're feeling so rotten. x

Thank you, that's really helpful.

If all your bloods are all normal now I'm not sure what you want the GP to do and I'm not sure any other GP would do any different. You can always buy extra supplements if you think they will help. Thin hair as you get older can be genetic, does thinning hair run in the family? Sores or problems with your tongue you should really ask your dentist, they can be concerned about these things.

Just had to reply to you @MoonDanceCafe thank you for your reply.

I too have wept in frustration at the feeling that the doctor, who is the gateway to further treatment/investigation, isn't interested in me.

Where does one go from here?

What you've said about new housing and a sudden increase in patients is what we're experiencing here as well.

According to a chemist I asked before buying oral ( sublingual) B12 tabs, most gp's don't give B12 injections anymore as they once routinely did; too expensive.

The chemist said there was a study about 10 years ago that determined that taking oral B12 was 'just as effective' ( not to mention cheaper) for a patient to take themselves, rather than the more expensive injections from the gp.

However if you're leaning toward injection OP, rather than oral, ask at a pharmacy if they give B12 injections, apparently the shift is towards pharmacists doing this now, rather than the over-worked gp.

All the best to you too, OP, keep after them, you deserve to have your health issues listened to and fully addressed.

3.3 Folate is low regardless of range. In order for your body to use B12 correctly your folate needs to be in the upper third of the range bracket.

I'd have a look at the Pernicious Anaemia/b12 deficiency support group on Facebook. It's really helpful and I'm now doing my own fortnightly injections after being under treated for years.

I had all your symptoms at a b12 level of 330 and Folate of 3.3 too btw. They wouldn't treat until I dropped to below 140 and was practically dead on my feet.

I pay for the b12 vials - my old doctor did all of the loading injections then once I was well over the limit on the blood test withdrew them (apparently they do this so you crash again and then have to pay for the vials yourself).
I spent the next 2 years being gaslit that I was fine and even was told twice to go to the dentist with one GP suggesting I ask for surgery to enlarge my jaw which was "too small for your tongue"!!!!!

I moved GP's and now pay £9 pm to have them and am just in normal range for UK references - still tired but not half dead and my tongue has healed and not swollen now after 4 months back on B12.

I agree - just change GPs. Either ask to see someone else at the same surgery or better yet ask your neighbours who they are with and would they recommend them and when someone suggests a good one, switch surgeries.

My hair has been thinking since my early 30's, I really don't think it's genetic.

I've shown the tongue photos to my dentist, she was the one who recommended I talk to my GP, she says it's not a dental problem.

I'm just going round in circles.

I’m sorry you’re in this position but it’s not that the GPs don’t care it’s that their hands are tied with they can and can’t investigate or refer onwards. Have you tried looking at your gut health? My ferritin is always low so I take prescribed meds every other day plus a spray iron, I also have thinning hair so take biotin and use a scalp treatment - ginger from body shop this has worked a bit. I also take B12, vit d, iron, HRT and collagen. I have adenomyosis. It all helps. Unfortunately you have to look after yourself. I don’t think you can compare hair pics from when you were 30 either, our hair naturally thins. Good luck OP

I really do look after myself though, that's the frustrating thing.

I have always been slim, I exercise (as hard as it is sometimes), I eat well avoiding all my known trigger foods and drinks, I only drink water, no alcohol, I have never smoked, I try to get 7-8 hours of sleep per night and I practise yoga every day. I have paid a small fortune in the past consulting with dietitians regarding my gut issues and always take on board what they have recommended but I have never managed to get to a good place with my digestive issues.

I have trialled various forms of HRT but they all made the endo pain worse and my endo gynae had advised that I stay off HRT.

I will try taking some B vitamin complex though and see if that helps with my issues, hopefully I will eventually find something that helps.

Thank you. Tbh I would much prefer an oral B12 if it helps, I am not too keen with the thought of self injecting.

I will pop to the chemist tomorrow and see if I can purchase sublingual B12. I have nothing to lose by trying them.

How long did it take for you to feel any better? I suspect it will take several months if they are going to help at all?

It is all so frustrating. Why are so many people (and it seems so many women) struggling with symptoms but are constantly told we are all fine and expected to just drag ourselves throughout each day feeling like utter shite?

Thank you for the FB support group, I will join them today.

It's always women being fobbed off in these situations, I agree. Imagine if men were told viagra/sildenafil wasn't necessary and couldn't be prescribed on NHS?

Literally couldn't get out of bed and had a swollen ulcerated tongue for 2 years. Family history of pernicious anemia too.

You couldn't write it.

I take a b complex (B9 included) as well as ferrous fumerate.

I Can sympathise.

A few times my ferritin has dropped to 6 and last year (after a mammoth period) my haemoglobin dropped to 85.

The iron alone, and b12 aren’t enough. I don’t think, as they all affect each other.

What meds/treatments have you tried or are you on now (long-term) which work? In respect to your GP, try and book an appointment with a different GP within your pratice, ask reception if there's anyone with a special interest in endocrinology or ENT or anything else. You can easily ask to not have an appointment with x doctor again, so that should help. Changing GPs is pretty easy, just do it from the NHS website, even if it's one a little further is likely worth it.

For the specialist bloods I'd hold off on that. Any doctor knows not to give medical advice online, they don't know your history, meds you've taken and have or haven't worked, what meds you are on, allergies, other issues, previous tests etc. So I'd question the advice of the anesthesiologist.

You can start getting pretty cheap vitamin D, vitamin B6, and maybe some B12 if you want. I'd see about getting a double appointment just list out the problems - in order of how much of a problem they are. Then you and your GP can focus on the major things first and see if some things are better 'grouped together' or you have put things into the 'wrong' group.