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?

I really am trying to help myself, I have spent a small fortune over the years on private doctors and specialists to find out why I continue to struggle with the issues I have but the advice for B12 is so conflicting and most NHS doctors don't seem to understand the complexity of it. I simply want to make sure I am getting the correct advice. I am concerned about spending the next 3+ months supplementing to be told upon re-testing that I am well within range and all is ok only to discover the supplements are masking the issue because from the information that I can gather, supplementing can easily result in false results.

My GP hasn't even suggested taking supplements, as far as she is concerned my Serum B12 is ok, she has told me there are no concern regarding the B12 at all. Yet some groups on Reddit etc and now the B12 society group (I've just joined the group) however are telling me different, so it is rather confusing. It appears B12 is complicated and not as simple as taking, say, vitamin D for example.

As I said a short while ago in my reply I will try supplementing and hope that I feel better and that will sort my issues out once and for all because that is all I wish for, to feel better but forgive me for being a little hesitant because the advice on B12 is so conflicting.

Yes, all are within range which is reassuring. My sister has a lot of thyroid and parathyroid issues and her bloods for thyroid were always way off so I am fairly certain my thyroid is ok.

Forgive me, but reading your responses I get the sense you’re a little over invested in your health. Could you be creating worry and anxiety and that’s the root cause of your problems?

Did they test for vitamin D. I felt ghastly and half dead and now I'm on it for life. Sorry I haven't read the whole thread as I'm really busy at work.

Maybe? But I feel like absolute shite most days, yesterday I had a splitting headache all day, hurt all over and had diarrhoea three times for no apparent reason. Pain killers didn't touch the headache.

It's very difficult NOT to be overly invested and anxious with your health when it stops you from trying to live a normal life.

I could very well be stuck in a vicious cycle with anxiety but I am getting to the point where I really don't know anymore. I've tried endless antidepressants, counselling and CBT (on another waiting list for more CBT), so it's not for want of trying to help myself.

I understand what you are saying but what's the answer? What more can I do to help myself because I am genuinely at rock bottom and worn out trying. I've spent money with hypnotherapists, counselling, even EMDR. I've even tried just giving in to everything, practising mindfulness (which I still do every day) and 'letting it all go' but my body still gives me grief and I have no idea why because I treat it well.

B12 tablets don’t work if you have issues absorbing it. That’s why people with diagnosed B12 deficiency need injections. B12 tablets are OK if you don’t have absorption issues, but most people don’t need them as they can get adequate B12 via diet. It’s mainly people who follow a vegan diet who have issues getting adequate dietary B12

As a medical person of 46 years I'm inclined to think that if you feel like crap then there is a physical cause to it, you just haven't found it yet.

Yes, dh and I have been together since our teens, we have a lovely relationship with our young adult dc who still live at home and I have a close relationship with my sister, my parents and my FIL.

I know the body keep the score and all that but I haven't got any skeletons in my closet (not that I recall anyhow!).

I wasn't diagnosed with my endometriosis and adenomyosis until I was 50 (2023) despite suffering with my periods since they began at the age of 12 and being a patient of the same gynae department and same gynecologist since 2011. So I am inclined to think that way, yes.

that’s why sublinguals or sprays work.

the body keeps the score has been is being challenged a bit btw. It never made any sense to me. Mind keeps the score but you can also spend time working on that.

it does take a good 6 months or more to recover from low levels of most things. Partly because it takes a while to absorb them or it takes a good few weeks for new blood cells to be made. (Obviously injections are quicker.)

If I’ve been underactive for a while it can sometimes take 2-3 months for me to feel better, longer if my folate is low (I’ve discovered.) And then these things can affect your hormones which can take a few more months to settle after everything is ok.

I haven't read all the comments OP but this really does sound like b12 issues. Have you been on the 'b12 wake up' group on Facebook? Full of fantastic advice and run by the b12 society. Do not take any supplements as they skew tests for months. With active b12 below range you need bloods for intrinsic factor antibodies and parietial cell antibodies. These indicate if you have absorption issues like autoimmune gastritis/pernicious anaemia. Good luck!

Thank you. Yes, I joined the group as someone up-thread recommended it too. Several on there say it's probably worth me looking into this a bit further and have suggested I get a MMA blood test and go from there. They have all said not to take any supplements yet. I will ask my GP if I can get the test on the NHS, if not I will have to try and see if I can get it privately!

Yep MMA and homocystine are useful and failing that see if they'll check for the antibodies mentioned above.

I would also add that if you have loading injections don't be fobbed off my GP that now your results are fine and you can stop taking them. Pernicious Anemia doesn't work like that (I moved GP's because he was clearly just waiting for it to fall back to the previous level, which it was quickly doing every month that went by) and wasn't going to let me have regular injections.

If your levels get to the right place after injections, then this proves that you needed the injections, and that if you stop them, you will drop back. You will need them for life.

A lot of doctors seem to think that you’re fixed once you’re back in the normal range, heaven knows why. You wouldn’t stop a diabetic having insulin just because their most recent injection normalised their insulin levels!