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?

Have you been tested for coeliac disease? My ferritin didn't go above 12 for years and my doctor was a bit useless but she did suggest testing for coeliac disease to see if it was an absorption issue.

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?

I've only been taking them for a couple of weeks, and I feel I'm not as tired as I was.
Reading up on it, if you are severely deficient in vitamin B12 it could take several weeks before you feel the effect of taking oral B12.
If you are taking them for a neurological condition, it could take up to 3 months though you should feel some effects within a few weeks.
Of course when you start taking them you have to be consistent for the best chance of good results.
Hope they help you to feel better OP.

I was also going to ask if you'd been tested for coeliac disease? My daughters symptoms were lron & b12 levels, hair loss and general exhaustion.
Worth excluding at least xx

I may have worded my op wrongly regarding the anaesthetist. I haven't yet had a consultation with him yet, I emailed him several times, he asked to see my latest blood results and advised that I may possibly still have issues with my iron, he suggested my B12 results may have been falsely elevated by the low folate levels. He then advised I have two further blood tests (the MMA and a full iron panel) which I can get online at a lab of my choice and then to see him in consultation. He is a consultant anaesthetist at the Papworth hospital so hopefully not some charlatan, he is highly regarded on the B12 deficiency support group that I follow.

I haven't found any medications which help with my symptoms. Iron supplements gave me terrible stomach pains and the only way I could raise my iron levels were as a result of the infusions in 2022. I haven't really been offered any other meds by my GP other than antidepressants. I have taken vit d for many years and have good levels. I will try vitamin b supplements to see if it helps before I consult with the anaesthetist.

There are two great GPs at our surgery but they are currently both on maternity leave, there is a locum GP, I could try to see him.

I have been tested a few times over the years. My latest blood panel came back as all normal apart from my IgA levels which are a bit low a d flagged up as abnormal by the lab, my gastroenterologist has put me in the waiting list for a other gastroscope but she is fairly confident I don't have coeliac disease as I've been tested in the past but who knows?

Coeliac disease was the first thing i thought but of but I see you have already been tested for it.
Minoxidil is great for thinning hair (mine started to thin in my 20s and Monoxidil has done wonders). You can buy it from Amazon.

www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/

It doesn't sound like GP has fobbed OP off. OP has had a large number of tests and investigations. The things that GPs can diagnose or treat have been addressed.

I have had spells of bad health so huge sympathies for dealing with that. My path to getting better didn't involve NHS though.

I wonder if OP would say all the medications she takes at least once a week, prescribed or OTC.

Just wondering if you have tried oral iron bisglycinate? It is SO much better than the standard iron tablets. I tried fumerate and another one I can't remember the name of, and couldn't tolerate either. But I have no issues with iron bisglycinate.

Just wondering if you know if your cholesterol is high? I also had a few tests with high cholesterol before the loading injections for B12 - they've never been followed up as I am not overweight (I presume) but seeing another thread on here and the symptoms are quite similar - breathlessness, fatigue, tiredness after walking and can also be familial. I'm going to ask to have mine re-checked as I know I had high LDL last year so it should be being kept an eye on anyway. Hoping it might explain why being just in range for B12 isn't taking me back to feeling 100% normal.

Can’t comment on you situation/blood numbers directly @MoonDanceCafe but just to say, I had an appointment with the Dr you mention.

Best money I’ve spent in a long time.

Ferritin of 5
Folate 2.2
B12 -270 I think.

I had an iron infusion and he ran some autoimmune blood tests. Said the b12 was low-ish, not horrifically so but as I had some other autoimmune conditions he wanted to make sure I didn’t have any gastrointestinal based ones that were limiting my absorption. Yup, positive for parietal cell antibodies (I think that’s right). Which is another autoimmune condition caused by your body attacking these cells that are involved with absorbing b12.

Caught it early before it had dropped a lot which was lucky. He showed me how to SI and I carried on under occasional follow up/reviews.

I was very happy with my care.

I have explained in some of my replies that I currently don't take any OTC or prescribed medication. I have tried several meds (I have stated mentioned which ones in my replies) but have not responded well.

It's not so much that GP is fobbing me off I suppose rather that she appears to be so uninterested. Based on yesterday's consultation with her I was sitting there telling her how poorly I feel and showing her the photos. She barely looked at the photos or me come to think of it, she just tapped away at her keyboard and appeared totally uninterested. This is what I'm finding hard to deal with, this constant brick wall I feel I am up against. I am trying my utmost to feel well and yet I am getting nowhere. It's draining.

I haven't - I will look that up, thank you.

My HDL is 2.12 and LDL 1.75. No action on these so I assume that's within normal range? Tbh, I don't know a lot about cholesterol so I'm hoping it's ok?

Dr Klein? I've not yet had a consultation with him but he has been really helpful when I've emailed him and responded really swiftly.

I am always apprehensive going to anyone privately as I don't have a lot of money to throw at this but I'm not going to get anywhere with the NHS so feel I have few options but I'm very nervous especially as several people on here are saying it's probably not a B12 or iron issue. I do wonder if I have any autoimmune problems as I have so many symptoms which have gone on for so many years. My sister has a couple of autoimmune diseases, not sure if they run in families?

I have currently lost all faith in the NHS, it took 30 years to get my endometriosis diagnosis, I was constantly fibbed off that my issues were all fairly standard for a woman.

From a quick google - I'm no doctor - your HDL is high. If I then add endometriosis to that it comes up with
"Your HDL level of
2.12
(presumably mmol/L) is considered very high, which can sometimes be associated with an increased risk of cardiovascular disease, though it is generally considered protective up to certain levels. Endometriosis is also linked to a higher risk of heart disease, potentially due to chronic inflammation, hormonal changes, and other factors. You should discuss your results with a doctor, especially considering your endometriosis diagnosis, to evaluate your overall risk and determine the best course of action"

Is it possible that some of this is down to peri- or menopause?

Can you tell us more about your sore tongue please?
Is it constantly sore?
Does it worsen / ease at various times of the day?
Is it affected by the types of food you eat?

Crikey! I hadn't given my cholesterol levels a second though especially as my GP had marked it off as normal and no action required, I always assumed mine levels were good but looking at my results now I can see one in particular is at the high end of normal.

I had no idea endometriosis and high cholesterol are connected. That's especially concerning as most people on my mum's side have died from heart attacks or strokes and mum has heart issues herself.

I'll need to look into this further!

I thought they were all good levels 😣

Peri has most definitely exacerbated all of these issues but I have struggled with them for years, way before entering this stage of my life. Peri has simply been the shed load of gasoline thrown into an already established fire.

It flares up several times a month and is often accompanied by a raspy feeling in my throat and blocked nostril and a weird phlegm-like feeling where I have to constantly clear my throat.

I've kept a food and symptoms diary for years due to my IBS. Obviously spicy and foods with vinegar can exacerbate it so I stay clear of these foods so still unsure what causes it. A GP once said it's simply geographicical tongue but it's weird how it flares. Still none the wiser years later.

Just to be clear because there is some misinformation in the thread. If someone is positive for intrinsic factor antibodies they cannot absorb B12 through the gut no matter now much they take so they must get regular injections.

also, not every B12 issue is related to lack of intrinsic factor - these are where oral supplements and dietary changes are helpful.

It’s annoying that different labs will have different ranges when looking at bloodwork.

Thank you Sc00byDont*, I'm finding everything regarding B12 quite confusing tbh.

No it's not true, you can absorb B12 through oral (submucosal) just in super high doses. It is possible. This has been established for many years and in multiple studies. It's an internet meme that only injections will do; echo chambers in support groups often create these false consensuses.

You don't have the main conversion mechanism but with the very high doses that can be manufactured now you can still absorb enough through passive diffusion. Here's a Cochrane report on this:

https://www.aafp.org/pubs/afp/issues/2006/0101/p65.html

And a longer form explanation https://pmc.ncbi.nlm.nih.gov/articles/PMC4993789/