I've felt like crap since last year. A health check had my B12 at about 250 with folate just below the NHS bottom range around December 2022. I was told it was ok, not to worry, I didn't have symptoms blah blah.
A few months ago I started to get tingling in the right hand (I say start, it had happened on and off for a year but I put it down to rsi or something) but because B12 was in my head I asked for more tests.
B12 was still hovering in the 250 range and they told me to take folate supplements and "you'll be fine." And anyway, B12 is bilateral and you've only got it on one side etc.
I just "felt" something wasn't right - brain fog, forgetting words, fatigue, and then my legs started to burn (bilateral this time, go me) at night.
So two recent tests - B12 had dropped to 204, latest one it's dropped again to 198 and finally - FINALLY - the diagnosis of deficiency came and I'm also VitD 35 so was told to take a supplement of 2000iu per day.
So to get this far I've had to go private which annoys me greatly. I have symptoms, what the hell, why didn't my GP say something? Anyway....
tl:dr I've had a mass of tests, like everything - minerals, immunology, tests for coeliac, the whole lot (including Active B12) but I can't see the doc for another two weeks so I don't know the full results, only that B12 is 198 and D is 35. And prior to the tests he told me to stop all supplements, perfectly reasonable obvs. However, now the b12 is in he said to start supplementing, but this came via his receptionist in an email as he was unavailable and I didn't have an appt so it was a bit vague.
Can I just continue with the 2000ui D and add in a spray (I've got Better You methylcobalamin 1200 daily oral spray), or should I also add my original folate supplements as well which I'd stopped using prior to the tests? Slightly perturbed that my level has suddenly dropped like this but I can take this up with him in a fortnight.
Any advice very gratefully received. I could go get a shot from a salon in the meantime if need be I guess. Meh.
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Onefish
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in case it's not clear, I think the supplementing is only for the next two weeks until I can talk to him. Kind of a "can't do any harm" approach. I'm hoping he recommends shots when we go through everything.
The amount of tests that have been run were pretty extensive so I really hope that I'll have some kind of answer in a fortnight. Unfortunately he's on leave, hence the delay but he is going to go through it thoroughly when he's back. One or two are outstanding (mineral counts I think, maybe iron too) so he' waiting to get the full picture before diagnosis.
I think the instruction to supplement was because the tests are now done and he knows there is a b12 deficiency even though we don't know why (yet). So if there's anything I can do in this two week period I'm thinking I may as well, I just don't know what.
There is absolutely no harm in trying out the oral/nasal spray , Definitely keep taking the vitamin D and folate . I do hope that your GP understands B12 deficiency . You must let us know how you get on . We will be interested to hear .
Thank you - yes, GP ran IF test in May and it was negative. I’d be very surprised if the haemotologist hadn’t done it this time as well - he said that my previous result proved nothing as you can get false negatives so he’ll have run it again. He’s run active b12 too but I’m waiting to speak to him end of the month to get the result of that. So looks like it’s safe to spray away tomorrow.
I'm not sure, Mixteca. All I know is that I had 10 (yes, 10) vials of blood taken and the list on the phlebotomy sheet had ticks all over it. I asked the nurse what was being done and she said "immunology, heart, minerals, pretty much everything". When I spoke to him earlier he'd said iron, magnesium and a list of minerals and vitamins I'd never even heard of.
You are on the start of your journey, it is a bit of a jigsaw trying to work out our own personal biochemistry and cause of B12 deficiency.
It is worth considering taking a B complex. I did put up a post how all of them are needed at cellular level. With exception of B6, they are water soluble. So we excrete excess out in urine.
Keep a symptoms tracker because all of us have our own weird and wonderful symptoms.
Keep a food diary, you may start noticing patterns, food you are craving, food you have gone off. For example, I used to love cucumbers. I now turn my nose up just at the mention of it. You will also notice your appetite.
Lastly, your output, urine and I always break the poo taboo. Note frequency, diahorrea, constipation and how healthy your stools are.
Sorry, I know it is Paediatric (children), although, it is Stanford School of Medicine, for a reason.
You are building up a better ‘clinical picture’. Our symptoms can be vague and similar to other conditions which can ‘confuse’ doctors.
I know they can feel rather helpless when a patient states, ‘I am tired all the time’. However, by being ‘proactive’ you will be helping them understand what you are experiencing.
When my vitamin d was low (7.6/19) a naturopathic doctor had me do 10 000 iu/day for a month & then 5000 iu/day for two months. And then retest (important because high amounts can be hard on kidneys and heart).
It worked. Went up into the 70s.
2000 iu is probably never going to get you there, with such a deficiency. It is more of a maintenance dose.
Just to be clear, it's not my GP doing these tests, I had to go private which I was lucky enough to be able to do on my partner's work insurance otherwise I'd never have been able to afford it.
To be fair, my GP DID run the IFA test, but apart from that it was a standard FBC, folate and serum b12 test. I had symptoms at the time but because the range was just about within "normal" no action was taken. It's only because I'd had enough of the unexplained brain fog, lack of concentration, crushing fatigue and those burning legs that I thought no, this isn't right. So the guy I'm seeing now is private, hence the Ab12 tests and the knowledge about negative IFAs. No one mentioned testing for coeliac as well until he did - I had no idea the two were potentially related. The GP did not test VitD.
I've not been lucky with my NHS GP at all - it sounds very similar to a lot of experiences I've read about on here. If it's within range, go away. If you're fatigued, take some anti depressants that will help you sleep. Brain fog - well, probably menopause. I mean yes, that is a symptom of menopause, but my HRT is working as it should and my oestradiol levels are good (I've had them checked). We even tried testosterone for that - no change, which there wouldn't be because if it's b12 causing the brain fog testosterone won't help.
I'm very fortunate that I have access to private healthcare via a work scheme, otherwise I'd be getting nowhere.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Local B12 deficiency guidelines
One thing I urge UK forum members to do is to track down the local B12 deficiency guidelines that your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland is using. GPs will probably refer to this for diagnosis and treatment advice.
If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a copy of or link to them.
Some of these local B12 deficiency guidelines are not helpful. I hope you are not in the UK area discussed in link below which has a poor reputation on this forum as to how B12 deficiency is managed.
Some UK forum members turn to self treatment is NHS is not enough for them.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort try self injection (SI).
I've left some useful links on the thread above yours "tingling hand and feet".
Lots more useful info on pinned forum post "Various PA/B12D resources.
Pinned posts are on right of screen if on computer.
Apologies for a short reply but tired out today (normally I'd write more).
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Hello Onefish. My offering is the following. Have you ever seen the movie "The Truman Show" starring Jim Carrey? It's kinda like that with people who have Vit B deficiency and one day wake up and realize that doctors know barely anything about B12. If you have not had an IF test (Intrinsic Factor), my advice is to have one to rule out pernicious anemia due to blocking antibodies, etc. Read up on that and it's not all that difficult to understand. It's important because I now must have shots for the rest of my life since I can't absorb Vit B12 by oral, pills, sublingual, etc. I can take all the B12 tablets I want and can never absorb any of it. You need to know if it's OK for you to take oral B12. As for Drs, they're like trying to eat soup with a fork. Very useless when it comes to Vit B12. The only thing they're really good at is growing a big head. All the stuff you are suffering from is all over the internet or books and you probably are more educated about B12 now then any Dr is. A couple books for you: Could it be B12 by Sally M. Pacholok and Jeffrey J. Stuart and What You Need to Know About Pernicious Anemia & Vitamin B12 Deficiency by Martyn Hooper. Mr. Hooper is the one who founded this very forum.
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B12 injections
Confused & could do with some advice please...
Depleting levels of b12
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