Could my issues be a B12 problem? GP is not interested.

[Fireflies73]

I have felt like crap for years. I have tried everything to feel well and I live as healthily as I can. I have been back and forth to various GPs and have had several hospital tests, everything has returned 'normal' but I still feel dreadful most days.

I have ended up having to reduce my work hours dramatically over the last few years due to how I feel so money is now very tight and I can not afford to see anyone privately but I was so desperate a few months ago I paid privately for some blood tests. I had my iron profile, thyroid, folate, Vitamin D, HbA1c and B12 tested. All came back ok apart from my active B12 and Transferrin satuation.

The Active B12 and the transferrin satuation came back as out of range but my GP said it was nothing to be concerned about. She re-checked the tests for me, the B12 came back as within range but I notice she had ordered Serum B12 not Active. The transferrin saturate came back the same as the private company, she wasn't concerned and said I can have it re-checked in 3 months, if I want to. I have no idea why it would be higher than normal as I don't take any supplements. Also my folate was just 3.3 ug/L last summer but has leapt to 10.2 this summer and no idea why - again GP not concerned about this.

I feel just awful, every day and don't know who to go to for help anymore. I am exhausted every day, I wake up tired and could sleep all day if I let myself. I have a long history with IBS but my guts are upset every day (acid, nausea, bloating, burping, pain, upset tummy and swinging between loose stool and diarrhoea, flatulence etc), I have had colonoscopies, gastroscopes, scans for BAM, Gallstones and tests for H Pylori, Coeliac, infections etc. They all return as ok which is great but no amount of careful eating, avoiding foods that upset me etc is helping one little bit and no IBS meds help me anymore.

I regularly suffer from a sore tongue, tinnitus which drives me insane, my head feels fuzzy when I stand up, I ache all over and every day, I just can not relax. I am depressed with such a very low mood, irritable and anxious all the time. My vision is always kind of fuzzy but I can't quite explain that one as sight tests are always ok.

And I am so so tired all the time, I really could sleep all day. I wake up exhausted despite sleeping 7-8 hours all night. I just can not get anyone to take it seriously, it's been going on for years now and I just don't know what to do anymore.

I don't know what else to try, do I just accept feeling like crap and just live out my life like this? Does anyone know if these out of range bloods hold any significance to how I am feeling? No doctor seems interested so maybe I am grasping at straws here?

I know I shouldn't use AI but I did ask ChatGPT and it said although my B12 wasn't screamingly out of range it still shows something and should be looked at but who is going to take this seriously?

buy b12 supplements and take them?

if you know b12 is out of range you can buy them in most pharmacies

Oh, I didn't post the results!

Transferrin saturation 50% Range (25-45%)

Active B12 54.9 pmol/L Range (70-150)

GP's Serum B12 303 pg/mL Range (197-771)

I have been told not to take otc supplements as it can skew the next blood test results and give false negatives/postives?

When you asked ChatGPT did you give it your age and other symptoms?

Could be worth starting to take a multi vitamin supplement- the NHS deals in big handfuls and severe symptoms, but you may be able to improve some of your symptoms by topping up.

I'd also suggest trying a probiotic supplement (you can get small capsules, I think they're more likely to reach your intestines than the ones in live yoghurts..).

I find that they have a noticeable effect on digestive upset, after a few weeks taking them; you have to keep taking them tho - every so often I decide they're unnecessary, stop taking them, and after about a month I get all the symptoms back again!

I did, yes.

I was taking a multivitamin a few years ago but it did nothing for me. I will have a look and see if there are some better quality ones as it was only a standard Boots one.

I have tried lots of various probiotics over the years but they did nothing for me unfortunately.

I am not as bad as you, but I feel like crap most days and my blood tests are all 'in range', but I take all this daily as I have MTHFR gene mutation (found out through 23&me test!). TBH, I am only slightly worse if I don't take it all. But on this lot, I am in range - so if they are doing anything then something is wrong (if my logic is correct - I don't trust my brain at the moment!)

🌅 Morning

• ☐ B12 (methyl + adenosyl) 1 mg, every other day
• ☐ 5-MTHF 400 µg daily
• ☐ Riboflavin B2 50 mg every 3 days
• ☐ Vitamin D 12.5 µg daily
• ☐ L-carnitine L-tartrate 1,000 mg (2 × 500 mg)

🌞 Lunch

• ☐ Vitamin C 100 mg
• ☐ Zinc 15 mg
• ☐ Collagen 3,000 mg
• ☐ L-taurine 500 mg
• ☐ L-carnitine L-tartrate 1,000 mg (2 × 500 mg)

🕒 Mid-afternoon

• ☐ Iron (ferrous fumarate) 14 mg elemental*
• Keep separated from magnesium/zinc where possible.
• Vitamin C can be taken alongside it.

🌙 Evening

• ☐ Magnesium glycinate 1,000 mg compound*
• ☐ 5-HTP 100 mg

It causes issues with turning t3 into t4 so I can actually use it. It also affects B12 usage.

I have literally yesterday sent a begging engage consult request to my doctors as I am so fed up of being told im OK, but in constant pain and tired.

I also have HSD.

MTHFR can also cause gut issues:

Digestive Symptoms: IBS, Bloating, and Food Sensitivities
While less commonly discussed, MTHFR gene mutations can contribute to digestive issues through impaired detoxification, inflammation, and histamine metabolism.
Common digestive MTHFR symptoms include:

• IBS (Irritable Bowel Syndrome) — alternating constipation and diarrhea, cramping, or abdominal pain
• Chronic bloating and gas — feeling uncomfortable or distended after meals
• Food sensitivities and intolerances — reactions to gluten, dairy, histamine-rich foods, or FODMAPs
• Leaky gut syndrome — increased intestinal permeability leading to systemic inflammation
• Nausea or acid reflux — particularly after eating certain foods
• Nutrient malabsorption — low B12, folate, or iron despite adequate dietary intake

Why this happens: Methylation supports detoxification pathways in the liver and helps break down histamine. When these processes are compromised, toxins and histamine accumulate, triggering inflammation in the gut lining and increasing sensitivity to foods. Important: Poor gut health can cause methylation issues by inhibiting the uptake of methylfolate into the methionine cycle. You may need to reduce LPS producing gut bacteria, restore B12 and glutathione and reduce inflammation before supplementing with folate. This is essential if you have ever reacted negatively to B-vitamin supplements. Management tip: Whilst you support gut health, consider a low-histamine or elimination diet if food sensitivities are severe, and work with a practitioner to heal your gut lining and methylation in a step-by-step process

Did you have covid or another virus before it started? It sounds a bit like ME/CFS to me. I have it and you unfortunately do just have to live with it and live within your limits.
For your sake I hope it isn't but if the gp can't find anything on your blood test results it does point to ME.

Did you get your haemaglobin checked? What was your ferritin?

To make haemaglobin which transports oxygen to your cells your body needs iron (ferritin), B12 and folate reserves. These will either be absorbed from food or supplements if you take them. B12 absorption in the usable active format can become problematic as we age and if you have digestive issues this can be compounded. You may be close to being anemic if you don’t have enough active B12 being absorbed to make haemaglobin.

Crikey, that’s a lot of supplements, how much does that cost you each month?

I also have hypermobility disorder.

I follow a modified low fodmap diet and have done for quite some time (all done via a NHS dietitian) but I do wonder if it needs tweaking and I have considered trying to adapt it to a more anti inflammatory/low histamine diet (although I do tend to keep low histamine or my tongue becomes even more sore than it is a a ‘normal’ day.

Sadly, I have zero savings as I had to reduce my working hours some time ago so I have to do this on my own, can’t afford to see anyone privately anymore.

I was iron deficient for many years due to very heavy periods. I discovered my ferritin was 3 for almost 8 years. I only discovered this because I had a uterine ablation and the hospital obviously did pre-op tests and it was found then, I needed an iron infusion before the op. I discovered later that my GP was fully aware and never bothered letting me know!

Anyhow, I haven’t bled for over four years due to the ablation so that has allowed for my bloods to normalise. The infusion was also 4 years ago (almost 5) so that can’t have any bearing on my current results, well I don’t think so?

My ferritin is now 90 ug/L and Haemoglobin is 155g/L so all returned as normal and within range.

I have felt this way a long time before Covid hit but I would say I’ve felt worse within the last 5 years. I’ve actually had flu, proper ‘put you in bed’ flu in every decade of my adult life so far. Once at 25, the swine flu at 36, flu again around the age of 45, then one or two bouts of Covid and last year at 52 I had either Covid or flu which put me in bed for over a week. Weirdly, I hardly ever catch a cold, sat in offices whilst everyone coughs and splutters and never catch a thing but when I do get something it knocks me for six.

I suppose those bouts of flu may have knocked my immune system down although my bloods always come back as fine.

Your haemaglobin is great and your ferritin is pretty good - I believe over 100 is optimal.
I take this B12 supplement as my Active B12 was only 55 a year ago. It’s really high strength and with the current Buy one get one free works out at 6p per day. After a year my B12 is over 150 (my Medichecks test doesn’t give the precise result.). I stopped the B12 for a month before the blood test - I think ideally you should stop for longer but who wants to feel worse again?

I also take a multivitamin from H&B. My folate is now 29.5 which is in range so yours is still pretty low. Medichecks say low folate can cause mouth issues and fatigue.

https://www.hollandandbarrett.com/shop/product/holland-barrett-high-strength-slow-release-vitamin-b12-1000ug-180-tablets-6100011430?clickref=1011lDzYfcNL&utm_source=partnerize&utm_medium=affiliate&utm_campaign=1011l26191

I would ask for a second opinion. Or change gp. I was fobbed off as "there was nothing wrong me with me that sleep couldn't cure" took another 2 years to be diagnosed with b12 i had a lot of that above symptoms you described. I've been on the injections now for almost 20 years with no return of the symptoms unless I really need a jab. If you're taking b12 in tablet form it might not work if your body doesn't actually absorb it (which is why I need injections). Good luck.

If you're taking b12 in tablet form it might not work if your body doesn't actually absorb it (which is why I need injections). Good luck.

Some people have a condition called pernicious anaemia, which means their body doesn’t absorb b12 from their food. If this is the case, there is no point taking supplements as you won’t absorb that either. In which case, you will need b12 injections. There are some really good b12 support groups online who will help you interpret your results.

Terrible advice. All this will do is artificially raise the OP’s B12 level in blood results but doesn’t help at a cellular level.

B12 deficiency that isn’t due to diet OR has neurological symptoms, like the OP has, requires every other day injections until no further improvement in symptoms. That is directly from the BNF.

I think it could be your B12, yes. I had Active B12 of 61.8 and was really tired. I took a very high dose supplement (1000mcg) for a few months and felt much better about a month in. If your GP isn't actually going to offer you B12 injections then you might as well try a supplement and see if it helps.

OP I was like you, i genuinely thought I was dying after getting sicker and sicker over the course of nearly 2 years and being barely able to stay awake.y dr and I tried so much. She dismissed B12 as my level was 247 - but I didn’t know that taking supplements affected results. So I hate to think what my real number was.

Anyway, I read about B12 and it answered everything. I asked my dr to trial injections, which she agreed to. I began to feel a little better. So I ordered my own from Germany, did every other day injections for 3 weeks (with cofactors) and then saw my dr again. She couldn’t believe I was the same woman in front of her. I told her what I was doing and she immediately agreed to prescribe it for me to self inject at home. I did that for over 2 years as was seeing constant improvements - but the biggest benefit were the early months.

So alongside every other day injections, I had daily 5mg folic acid, a vitamin B complex with less than 10mg B6 daily for 4 months then break for 2 months, 10,000iu vitamin D in a soft gel capsule with olive oil carrier, K2, magnesium spray and I was on iron supplements too.

It saved my life. There’s no negative to trying the injections because your body flushes out any excess - but you do need your first in a medical setting because of the tiny risk of anaphylactic reaction. Ask your dr to trial injections based on your symptoms. If they refuse, ask for that in writing for your solicitor.

Sore tongue is a key symptom of anaemia. With your gastric issues it seems likely you have some issues with absorption and are probably deficient in key vitamins.

If you have an autoimmune condition already it's highly likely you have more. Both Crohns and Celiac can cause anaemia and you need to be checked for these.

See another GP if you can i don't think your current one is doing a great job.

I have B12 deficiency, your symptoms do sound a lot like that’s a possibility. If you have issues with B12 absorption supplements are unlikely to help.

You can get a sublingual spray that is easier absorbed.

Thanks everyone. Tbh, I just find everything about B12 deficiency really confusing with so many GPs and medical staff seeming to know very little about it and the ranges apparently set differently in the various labs/NHS trusts across the UK. And even more confusing are some people saying oral B12 is perfectly sufficient, whilst others state that the only way to fully address a deficiency is via B12 injections and over a long period of time and if you have a true deficiency oral supplements with give false readings and you'll never fully address the issue. I have recently contacted the B12 society to be told the Transferrin Satuation blood test should be tested by the lab within 2 hours of blood draw, I just can not see my GP or local hospital doing that.

I can't understand why a condition which seems to affect so many people (Google tells me it is approx. 6 million in the UK alone) and results in awful issues if left untreated can be so difficult for the NHS and most doctors to understand. There must be so many under-diagnosed people suffering every day and only getting the treatment once they reach a crisis point in their health and often with irreversible consequences.

I suppose I can start to try some sublingual supplements (reading they are better absorbed than any other oral versions) but I want the results to be accurate, I am fed up to the back teeth feeling so 'below par' all the time. If I do have a deficiency I would like it addressed before I get to the end of my days (in my 50's already and want to feel a little alive before I pop off this earth!).

TickedOffAndALittleFedUp All of my bloods for anaemia are good, in fact since my iron infusion in 2022 they are the highest they have ever been. As far as I know I don't have any autoimmune diseases apart from endometriosis which I know they are currently doing lots of research on to establish if it may be autoimmune. I have changed GPs, this is a new surgery that I go to, I even paid to see a local private GP earlier this year and she wasn't interested either, they just want me on antidepressants, that seems to be the answer to everything (antidepressants make me feel dreadful).

I did ask my previous GP but they said they couldn't fund the injections as my levels were within range, I can ask my new GP but I doubt she will agree either.

I will look into trying supplements but money is very tight at the moment and I don't want to be purchasing that will be of no benefit to me and supplements are so expensive.

Go and see Dr Andrew Klein. He is amazing on these issues and it is so worth the money. I felt exactly like you and was also fobbed off. I’m now 6 months on from an iron infusion and twice weekly b12 injections for 4 months and I feel incredible and so relieved. I was almost believing that I was just depressed!

B12, iron and folate are all co factors so if one is low they’ll all be off. Have you had your ferritin checked?