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?

Ps my b12 has gone from 147 to over 1500 but I still need regular injections to feel ‘right’ and the private doctor said that due to the neural damage caused by chronic untreated low b12, this could continue for a couple of years.

My ferritin was 9, went to 12 with tablets, but over 200 after the infusion. The relief that I’m not mad or a hypochondriac is just incredible.

Where in the BNF does it say that?!?

If the b12 is absorbed from the gut enough to raise blood levels then it's just as good as the injection. B12 by injection is absorbed via the muscle into the blood too.

The injection is needed when the gut can't absorb b12 or when a more rapid correction of levels is needed.

@Fireflies73 are you on any other medication and how old are you? The tiredness, aches and tinnitus are all possible perimenopause symptoms, have you considered if your symptoms might be hormonal rather than a deficiency?

So what’s the difference between active b12 and total b12? I’ve recently been told mind is low

My dd has been where you are. Everything comes back in range but when you look closely (which doctors don’t) several things are only just in range.

In her case ferritin, folic acid and b12 injections really helped.

But she did previously have a period of anxiety/depression and that is when she was literally sleeping all hours. Her vitamin levels may have made this worse but don’t dismiss the effects of depression either. It might not be a case of either/or. It could be a combination, particularly because of the anxiety around the health issues.

Vitamin B12 Deficiency in Clinical Practice By Joseph Chandy is a very informative read. The NHS are strangely terrible when it comes to B12. Like a previous poster I but injectables from Germany. There are support groups on Facebook.

You mention hypermobility …are you are aware of Ehlers Danlos Syndrome (EDS), and its many forms? There are quite a few overlaps with your symptoms.

Why not try full dose oral supplements for 2-3 months. It's far easier and cheaper than injections and something you can easily do for yourself if GP won't engage with you on this.

Cyanocobalamin 1000 micrograms (1mg) daily would cost ~£10 for 3 months.

I have pernicious anemia and you need loading injections first (NHS will do free if bloods show PA) then one every few weeks for life - it isn't something that goes better if you can't absorb B12 but something you will have to pay for monthly apules for. I have been on the injections for 2 years and feel completely different to the zombie state where just wiping down a kitchen surface felt like an epic job. I have macro glossia which hasn't improved however, and was mistakenly described as glossitus by my old GP. I still get breathless easily and have done private bloods to check vitamins and minerals as GP kept saying it was likely iron, but all of those are stable (including my B12 now!) so I am still not 100% but certainly wouldn't have had the energy to keep asking what is wrong if I hadn't switched GP's and asked for B12 injections. My issue with the tongue is that if I get a cold I really feel like I might choke on it and it makes the muscles under my chin hurt/ache as well as makes me tired when I have to talk a lot as it is like a heavy tyre I have to lift to reply. No one seems at all bothered by this in the medical world, however, but it didn't go away with the injections anyway!

Just come on to say what Baffled said. I have been exhausted along with other symptoms for years, was diagnosed with M.E when I was young. Since then all of my children and some of my siblings children have been diagnosed with Hyper mobile Ehlers Danlos Syndrome. I haven't got a diagnosis because quite frankly I can't be arsed, as I'm too tired to go through the process again, but I know that's what I have. I also have very low ferritin.

Thank you. Is he from Cambridge? I've just googled him, think it's the same guy. Cambridge is only an hour's drive from where I live. Does he charge a lot? I'm not working at the moment so money is quite tight.

My ferritin is 90 now but was at 3 for 8 years until I had iron infusions in 2022.

I take no supplements or medications.

I am 53 and still in perimenopause. I have tried various forms of hrt under a hospital specialist as I have endometriosis, sadly they all exacerbated my endo pain so I was adviced to come off. I can't say any hrt made me feel better sadly.

I also had these symptoms in my 20's and 30's but was iron deficient for so many years I'm for sure if that was contributing to the symptoms?

From what I've read the total B12 measures the total amount of B12 picked up in your blood where's Active B12 measures the amount available for cell use!?

So I assume when my GP is saying my total B12 looks ok my body isn't actually able to use all of that up.

Thank you, I will check that out.

I've had a long journey trying to find out if I have eds or not, it's another thing no GP will give me straight answers for. All they ever want to do is throw antidepressants at me.

The more you post the more it explains. The hypermobility could in fact be hEDS and this very much causes fatigue. The endometriosis in itself can cause fatigue issues and in fact your IBS could also be endometriosis related, I was told for years I have IBS only for endometriosis to be found on my bowel and the specialist said this could cause the bowel issues.

Add to this previous iron issues and B12 issues plus perimenopause, it honestly makes sense.

It might be worth asking for a referral to a CFS/ME clinic as they may actually be better at looking at all the other causes and making sure everything else is ruled out.

But I think your history is actually complex and the things you have or potentially have, all have crossover issues and a couple can cause draining fatigue.

I would definitely look up hypermobile EDS and see if this could fit. My Daughter suffers dreadfully with fatigue at times. I kmow you say money is tight so private is not an option but seeing a menopause specialist with an interest in endometriosis could be helpful, as could seeing someone for B12 and historic iron issues.

I have huge issues with my tongue, no GP I've ever spoken to has been concerned but some days it's so sore.

Sorry if this is tmi and no a pleasant pic but can I ask if your tongue looks anything like this?.....

The NHS is awful for help with this. Rheumatologists now refuse to see people and GPs who are meant to diagnose, dont have a clue about it. I gave my GP the EDS toolkit supposed to help with diagnosis and he said thats really useful but not something I feel I can use.

Do you think it's all related?

I am convinced my mum and grandad both had undiagnosed EDS, I only ever remember my mum in pain. Both myself and my ds were born with double hip dysplasia and my son, now 21 has been diagnosed with hypermobile syndrome. He has had regular knee subluxations since he was a small child.

Sorry, that picture came out a lot bigger than I expected but my tongue regularly looks like that and is really quite sore at times. Not sure if that is related to a B12 issue or not but no amount of mouth washes, changes in diet or mouth guards have ever helped.

Get on the Pernicious anemia Society wed site. Saved my life, 20 years ago I was going to my Dr saying I couldn’t stay awake during the day had tingly hands fuzzy eye sight and not able to concentrate, was fobbed off with peri menopause… luckily I could afford a private Dr and he started me on B12 injections and I came back to life. I know purchase them from Germany they work out less than £1.00 per injection, life changing and no issue of overdose you just wee it out.

Thank you. I am under a specialist endometriosis gynae at my hospital. We have trialled various forms of HRT but they didn't help and made the pain worse so she had now suggested venlafaxine which I'm loathe to try as I've tried many antidepressants and they left me more zombie-like.

I will see if my GP will agree to a referral to a CFS clinic?

It's awful so many specialist clinics are offloading their patients back to GP services. My mum has advanced Alzheimer's and the dementia clinic has discharged all their patients back to the community services, her GP knew nothing about dementia and told me to stick mum in a home. I changed her GP over to auch more understanding one.

Thank you, I will take a look.

I do think it's all related, I don't want to go into detail here, because it's not just my medical history I would be talking about, but I would say that the females in the family have more problems that are influenced by the hormones.

While the males are generally more bothered by partial dislocations, stretchy skin etc, they still have some of the other symptoms, but they are maybe more stable because their hormones are not going through a cycle. Physically they are more robust.

If it is EDS you will drive yourself mad trying to fix yourself. I eat well, don't drink, or smoke, don't have caffeine or sweeteners. And I still feel like shit. Even when I've just had an iron infusion. The best advice I have is acceptance. Be gentle to yourself, accept your limitations and live within your capabilities. You may never feel well and you have to be ok with that.