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?

Both me and my Daughter have health issues and honestly the only way things have moved forward is paying privately. Ive been incredibly lucky to have got some extra money last year and have been using this but it seriously is getting to be quite a bill. I was fobbed off for 20 years before seeing an endometriosis specialist and finally found out I have endometriosis and adenomyosis, got surgery on the NHS and now waiting for a follow up to make a plan.
I had to see a menopause clinic because despite bloods showing perimenopause ranges multiple times, because 1 showed as normal the GP said it was fine and not perimenopause (this was a new GP with an interest in women's health apparently!). I have had to pay for private bloods and scans to get answers as its just painful trying to get help. I wrote to my GP in July about my fatigue which has been awful since 2024, it took until mid august to get an appointment then 3 weeks to get an appointment for bloods and they said they can review them at an appointment end of October. Its just been so frustrating trying to get any help and it is starting to feel like the only way to get help is pay. Which is no good when in your situation your health has got so bad that your finances are impacted so you cant afford to do that.

Some ways to potentially look at extra help, benenden health are I think around £13 a month but they help with pre existing issues. Also my bank is one you pay for with natwest, it is £23 a month but with that you get cash back and lots of extras (AA cover, gadget insurance, travel insurance etc) which may make it worthwhile and as of next month they include a medical service which is GP appointments 24/7, physio and mental health. I dont know if any of those might be worth looking into?

The injections cost less than £1 per injection. It makes me so mad when they use this excuse. The expense is the nurse time.

When I bought my own to inject from Germany, I went to my local needle exchange to get the needles and syringes I would been for free. When I was able to get them prescribed instead, I then bought my own (100 syringes, 200 needles (1 to draw up, 1 to inject) & 100 wipes cost me less than £15 including delivery. If having every other day, that would last just over 3 months.

If you are on Facebook, look up B12 Wake Up. It is run by the B12 Society and they are extremely knowledgeable and helpful.

The folic acid is essential with B12 injections. Without a high enough folate level, your body can’t utilise the B12. The other supplements are what you’d want for optimal recovery - but you could look to add bits in slowly.

Money was beyond tight for me when I started. But making me better stopped me from losing my job - so that alone was worth it!

Have they checked your parathyroid (PTH) and calcium levels? A lot of what you describe could be Primary Hyperparathyroidism. It’s more common in women but rarely screened for. Calcium can look in normal range, so don’t rely just on this. You specifically would need to request a PTH blood test. Happy to answer any questions if helpful! The symptoms you describe are a good fit