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 have never been, but my distant relatives go there for the so-called MOT - like literally any test. They are health freaks - when I say freaks I mean they even check antibodies before re-vaccinating (like they won't automatically re-vaccinate, only after having checked that they don't have antibodies anymore, say for Measles). They are German-speaking and speak German there, but they say they all speak English as well - you just need to google their clinics - all online, with prices of tests, and then maybe email them asking your particular questions and see what they can and can't do. My relatives also get dental treatment there - with 3D head scanners which are available only in Harley Street here or in dental hospitals. There it is a standard part of a dental check-up. They deliver the results to you within 2 days.

Thank you, I will investigate. I love how educated the Germans are on their health though - I bet their GP's don't fob them off!

So you don't take them for a week in the runup to the next blood test, but if in between blood tests you take the supplements daily for 8 weeks (ensuring it's something with high bioavailability - some supplements are useless) then you will be able to measure whether that has an impact on how you feel, and if you then stop taking them in preparation for the next blood test and your health deteriorates then that will be valid information.

I’d agree with taking matters into your own hands, as lack of GP attention forced me.
OTC supplements, if brought from a reliable source, with the suggested dosage followed, will not do you anything but good. In fact, the one excellent but very part time GP you can never see but I trust positively recommends all other 50s take B12, D3 and Magnesium Glyphosphate daily as levels decline with age.
As regards your IBS, have your tried kefir? Yeo Valley make flavoured versions that are often better than others, and we find the mango one very palatable - but it’s sorted out my DH gas and poo after years of issues.

boring but true

I find sublinguals more effective. https://www.cytoplan.co.uk/vitamin-b12-capsules-as-methylcobalamin-adenosylcobalamin

Also eat lots of vegetables, protein and fermented foods such as coffee tea plain yogurt, saukraut, real cheese, and 70-90% dark chocolate. Healthy fibre from oats, brown rice, quinoa (pre cooked merchant packets or Sainsbury’s own are cheaper) and chick peas etc. beans though they can cause gut issues if you go gung ho. Slow changes.

take some omega 3 daily.

I have to say that it is not their education that propels them there, it is their meanness. They are so tight, and they don't find it embarrassing. They boast about it (?????). They have all these tests available to them in Germany. I am sure if those tests were 5p cheaper in Uruguay, they would fly over there instead of the Baltics.

Definitely also a vit d spray all year except if getting a lot of sun. Better you is good. Can get one with vit k too. 1000-3000 daily. Or 3000 a few times a week.

Yes to most of this.

Although I haven't taken any B12 supplements because I have been told this can give false results and oral supplements are not great at raising the levels correctly apparently. And this is where I find things confusing because I keep coming across such conflicting advice regarding B12. I joined the B12 Wake Up group yesterday and they tell me not to take any supplements whilst trying to get tested.

I take no other medicine or supplements (apart from peppermint capsules occasionally for my IBS). I am slim (9 stone, 5 foot 6), I have to eat healthily due to my digestive issues and I follow a specialist diet as I worked alongside a NHS dietitian for some time. I only ever drink water because I can not tolerate fizzy drinks or any kind of artificial sweeteners at all, occasional mint tea. I sleep with the window open and I have no air fresheners or anything like that in the house. I used to work for hospital consultants and an oncologist years ago believed plug ins etc are the work of the devil and that stuck. Anyways, I can not tolerate strong perfumes etc as I end up with headaches and a blocked nose.

I only drink filtered water and lots of it. I have a dog so have no choice but to walk him every day, I live semi rural so out on fields every day come rain or shine.

I am 53 and have been in perimenopause for the last 8 years. My issues started long before this but have definitely been greatly exacerbated by my hormones. I have tried various HRT via a hospital specialist gynae because I suffer from endometriosis and adenomyosis, they all made the pain worse so I was advised not to take it.

I have never tried EPO, my mum took it for years and it did nothing for her but I am willing to try anything at this point, so will look into that, thanks.

So as you can see, I try everything that I can to feel better, for me it's not a simple task of eating healthily and trying to change my mindset, I have tried everything within my power (and purse strings) to feel better and here I still am.

Definitely

I take this through the winter and into spring and my levels never seem to go past mid upper

https://betteryou.com/products/vitamin-d-k2-oral-spray

The active b12 is important as you can keep on taking supplements but your cells cant access 80% of the b12 thats in your body, it has to be bound to a certain protien.

There is something called 'functional b12 deficiency' and the guidelines changed recently to say treat on symptoms not just serum b12 (symptoms include sore tongues, dizziness, tireness, pins and needles, brain fog).

I am in no way medically qualified but know that injections are how functional b12 deficiency iss dealt with, same as b12 deficiency often is.

I can't tolerate dairy but I do have dairy free coconut milk kefir. Not sure if it helps at all but I enjoy it so stick with it.

I have been reading a lot about Magnesium Glycinate recently and have considered trying this for my muscle pain and aches. I would absolutely not be able to tolerate many forms of magnesium due to having IBS-D. I have been doing a lot of reading regarding magnesium over the last few days but haven't heard of the glyphosphate form, I will have a google, thanks.

yes I was perplexed about this for a long time.

body stores b12 for around 4 years.

I ended up working out that basically I’d have to become really deficient to be treated and I’d likely only get the same tablets I can buy. And they’d test me again and find me quite high and stop the tablets.

A colleague just pays for occasional b12 shots.

Mild absorption problems are probably more common than we think.

See, this is where I am so confused as I have been told not to take any supplements at all.

By who? If the person who told you that isn't actively and properly engaged in helping to find out what the issue is then this instruction is worthless.

Try ChatGPT again, only this time copy and paste your OP along with adding ethnicity, age, BMI, whether you smoke, vape or drink, your general diet.

I would say basic principles for feeling better in general not just you would be not smoking, vaping or drinking. Minimum 2 litres of water per day. Good multivitamin for your age group. Long hard look at diet if it’s not nutritionally high. Measure your sleep, download a health app. Be active. Private bloods if you can afford them.

Yes, you are right. I suppose I have nothing to lose by at least trying an oral supplement, I am just so fed up spending so much money on products, tests, private doctors etc and getting nowhere.

I think I will purchase some sublingual B12 and see how I feel in a few months. Fingers crossed.

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. I was also told by him that my jaw was too small for my tongue and I should be looking into surgery to widen it (completely ignoring that I had a normal sized tongue for over 40 years). GP's can be very odd with resource guarding, particularly male ones with female patients in my experience!

I don’t really understand people saying to you that taking supplements will affect blood tests. Yes they will, because your B12 will increase which is what you want isn’t it? If you are worried it’ll spike in your blood but not be absorbed into your cells(?) then just stop supplementing for two weeks before the repeated blood tests to get a clearer view.

some people do need b12 injections but I think it’s daft not to try cheap supplements first. Especially if it’s only borderline low not severely low.

I had my b12 tested a few years ago and it was quite low. I’d been vegetarian for years so I guess I’d just not eaten enough. I supplemented for 3 months with the highest dosage I could find and it shot through the roof. I stopped taking them and a year later it was still high end of normal so obviously absorbed!

I do think I’ve an issue as it took me 6 months to be just outside range.

Also my Mil took a b12 thing for years from H and B and was told to stop as hers was really high.

But I have hypothyroidism, which has been bad this summer was also affects stomach absorption of things. People on thyroxine seem to need a bit more of vit d, vit b12 and folate anyway.

I've requested female GPs since my male GP actually laughed at me when I went to see him at the age of 45 with what I believed was the start of perimenopause. He told me there was no way because I was too young and wasn't experiencing day time hot flushes at the time. He told me all I needed was some Sertraline.

I'm sure GPs these days have been brainwashed in thinking SSRIs are the elixir to all life's issues!

FWIW I've tried many antidepressants over the years and none have made me feel better, zombie-like yes but not better, far from it.

From what I can gather from the groups is that supplementing can falsely raise the serum B12 results which is the standard NHS testing (as my own GP uses) yet the active B12 could be much lower which is what I seem to be experiencing. My serum B12 is currently 303 which the GP says is normal and within range yet the private blood test used the Active B12, mine is below range and the active B12 is the amount my body has to utilise as serum B12 is bound to a protein and active is not? (or something like that). So I could supplement and test again and my serum B12 could go even higher and the GP would be happy with that yet they don't test for my active B12 which could be the same or even lower and my body may not be able to make the most of what is available or using any of it.

But in saying that the only way I'll truly know how I'd actually feel on them is to try the sublingual version I suppose and if I do feel better then that would be a bonus and I wouldn't need to be re-tested if I have sorted out all my issues.

Call me a cynic but after years of feeling like crap I'm doubtful but I must try, I know.

So jusy take b12 tablets why complicate it

Interestingly the exact combination you took was what got me out of awful neurological post viral issues post covid 4 years ago - it took 6 months but very gradually all the issues went away - I also went gluten free on that period as the neuro I saw told me it can help some people who have post viral inflammation of nervous system - I was convinced I had MS or something similar.- and I’ve never been one to focus on health , I hadn’t seen a GP for 23 years ( was 60 at time) apart from a few smear tests

I guess you had thyroid checked?

But logically, why would a GP prescribe you treatment intended for those with who can’t absorb b12 through food/ tablets without trying you on tablets first? Particularly if your deficiency is only borderline.

Something like 20% of people over 60 have a b12 deficiency. Something like 50% of the population have a vitamin D deficiency.

I did some thriva tests, I supplemented some nutrients for 3 months and retested and for me that sorted it. If you do the same and yours isn’t then yeah go to gp again but why wouldn’t you try an help yourself?