Have been on the forum for a while, and has been a great help but asking for advice.
About 2 years ago I had problems walking, was constantly tired and generally felt absolutely awful. I was forgetting names, and even falling off my bike when riding. Couldn't eat, couldn't sleep. Painful peripheral neuropathy.
I then started collapsing, and any stress would cause me to need to go to bed as I was light-headed. I went to my GP and after the typical frosty reception (all in my head, high-stress lifestyle) I pressed for tests and had a call a bit later that I had a B12 deficiency. Recommended supplements.
I wasn't getting better, and my walking got so bad that I went to see the GP again, I saw a different one who immediately put me on multiple weekly injections because my B12 was very low, and I had a clear issue with my gait. Booked me in with a Neurologist, Follow Ups etc.
After that I did get a bit better, my balance improved, my lightheadedness lessened, and can ride my bike again. My feet and fingers no longer hurt, and I don't burn myself in the bath.
However, I still haven't got much better. I pushed for a gastroscopy with the previous good GP (I also have Gastritis it seems) but then was given a different GP.
I was very busy at work, and after a particularly hard week, I got up in the morning and collapsed in the garden. The ambulance called to my house as I kept falling asleep on the phone, but they left me in bed and told me to contact my GP. I was signed off for a month.
I saw my GP and explained that I think my B12 deficiency is probably caused by something else, however, he won't consider further screening beyond standard testing and my Neurologist appointments/spinal MRI scans (which are for symptoms and not causal investigations). I was put on antidepressants early on in my b12 symptoms, which naturally did nothing, and I think he believes that I am stressed and depressed causing my symptoms. He was pretty annoyed that I withdrew myself from them.
The Neurologist was good though, he hasn't signed me off from his treatment and has referred me to a 'Long Covid Clinic' as it is all he can really do. I don't expect much as I think I had mild symptoms long before Covid, and possibly that was just the 'nudge'.
My GP will sign me off whenever I need, but I enjoy my job and want to get better! He thinks I should just 'reduce my stress' and I will naturally get better. I need to stop worrying about it it seems.
Literally marched me out of his office when I protested that I didn't think he took it seriously enough. Don't feel eager to see him again frankly.
After almost 12 months of 'Not Worrying' I have not got better, I am still tremendously exhausted sometimes, and I have brain fog and quite terrible tinnitus. I find it difficult to drive long distances and have to write everything down. Hot weather makes it even worse. Feel hot and itchy, then sometimes really cold.
I feel pretty awful about this all the time, not least because I cannot play with my kids as much as I want. My hair has greyed and I have lost muscle mass in my legs.
And the worst thing is that sometimes I have lots of energy, and I am a bit back to my old self, only to crash into bed.
It is really bad in the mornings, to the point that I sit there exhausted with my head spinning and tinnitus going wild, however in the evening, it lessens, to the point that I am almost back to normal.
Info about me. Mid-40s vegetarian (Oh aye, that one was also picked up on)
UK
Regular Exercise when I can. Slim
Taking Multivitamins, B12 Oral spray, High Dose Vit D and occasional Iron Tablet. 3 Monthly b12 injections.
No other conditions (I find this suspicious, I am not that healthy!)
Occasional Drinker but significantly cut down.
No Drugs. No Smoking.
What is my next step? Considering private health plans but not sure they will do anything else? Or will I just be paying to be told to get lost as well? Advice on where you would go?
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TomatoTomato
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Unfortunately, every 3 months is the most I can get. And they are not in a hurry, once it ended up much longer because of staffing an I have to travel to different surgeries.
If you needed B12 just to top up a vegetarian/vegan diet, you would be better by now and be able to sort out your dietary lack of B12 with fortified milk and cereals, eggs and/or cheese. Or worst case, tablets.
But what you have is neurological issues caused by B12 deficiency. This requires a different treatment : every other day (EOD) injections until no more improvement can be had, and only then can a maintenance frequency be of any use to you. Common sense would tell you that "until no more improvements can be had" can only be your decision or perhaps a discussion between you and your GP, so very important that you have a supportive, proactive GP -which you currently don't.
The NICE medical guidelines then suggest a 2-monthly maintenance frequency, but some GPs are happy to work with their patient to find out what works. The point is to maintain all the gains from the EOD injections without having to deteriorate before the next injection.
My GP managed to get the highly reluctant nurses to give me two injections a week for 6 months, before trialling a maintenance regime of 1 a month. This did not work for me.
I decided to self inject EOD until I felt that I could use less with the same result and now inject every fourth day - so basically back to the 2-a-week NHS routine. She found B12 deficiency and then later (by MMA test) functional B12 deficiency -and this treatment stopped my deterioration, which was speeding up despite the 3-monthly "maintenance" injections on the usual B12 def frequency. Having done everything she could, she pushed very hard to get all she could in the way of help for me from secondary care, e-mailing consultants and writing detailed reports. She understood why I started self injecting, and continued to monitor my bloods: folate, ferritin, vitamin D, thyroid ...but never my B12 !
But even she had, very early on, tried three times to get me to take antidepressants.
We are all different when it comes to preventing return of symptoms, but if NICE are advising GPs initially to administer EOD injections for nerve damage repair, your GP should believe them ! How long nerve repair takes would, I'm sure, depend on the damage caused. Not everyone gets everything back, so waiting for your GP to catch up is risky. Don't bother wasting time thawing out your frosty one !
Other GPs within the same practice will have differing views: better help is out there.
A neurologist can get electric nerve tests carried out to check signals to legs/arms/feet/hands (main nerves), and can get MRIs (brain, spine) - you may get more information about any damage. A gastroenterologist can give you the rest of the picture.
A good GP would make sure you get all of this. Mine did.
Thanks! What a helpful reply. I did have the nerve tests done also, and a spinal MRI, all from the Consultant. I also saw another GP, who was really helpful and recommended further testing, but was a Locum. So back to my regular. It is frustrating because although I have the symptoms, they expect them to lessen over time. And time can be next week or the heat death of the universe.
I am taking tablets, and have a high b12 diet. I agree I should be better by now, but the GP just tells me 'less stress, it is all in my head'
I think I will book and work through the unwillingness of the GP. It has been almost a year now of 'reduction in stress', so perhaps he will have a change of mind.
It would be interesting to know what your MMA is doing. This, if high, would point to a problem with transfer of B12 to where it is needed. It seems more likely that, if the multiple weekly injections that were effective were stopped and you stopped improving, the answer is just that you might need more frequent injections (EOD) for longer.
I think I self injected for a bit over two years before reducing to around 2 a week.
The improvements for some can be gradual and not linear; "blips" can be quite disheartening, but are temporary.
A senior ENT consultant saw me, at a point when I was thinking that my EOD injections were so ineffective that perhaps the diagnosis was wrong. He told me that my GP had written a very thorough report. He examined my mouth, throat, tongue - and a few photos I brought with me. He agreed that saliva duct strictures and saliva gland infection would affect extrinsic factor's (food containing B12) protection because of haptocorrin reduction. He discussed my self injection regime, and then said:
"It is evident that you have severe B12 deficiency. Be persistent and don't stop doing the injections. It will take you a long time to get better, but you will."
He had not tested me for anything or taken bloods. He had read my GP's report and praised her work; he'd quoted from it during the consultation and had it in a drawer next to him. It is possible to meet consultants who are experienced, professional and kind.
Years later, my Oral Medicine consultant professor was not so keen on my regime or my"sky-high" B12 blood test results. He asked my practice to help me gradually reduce my injections...... no-one responded to that request.
In November last year, he changed his mind completely. He told me that he'd been speaking to experts - and now believed that I should continue with my injection regime, that tablets would be useless, and I should not reduce my B12. So it is also possible to meet consultants who are able to challenge their own beliefs.
I actually think that the Long Covid Clinic might prove useful. Perhaps by now they are accustomed to seeing patients with B12 deficiency issues - since there are many symptom similarities. This was identified early on by Martyn Hooper (founder of the pernicious Anaemia society) who wrote to specialists in this field. There has also been some research demonstrating treatment that was successful in keeping older hospitalised Covid patients off ventilators - by using DMB ( Vitamin D, magnesium and B12 !)
Meanwhile, if you believe that your GP is worth another try, I can only wish you the best of luck ! Please let us know how you get on.
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