Hi, I posted on here about 2 months ago. I live in the UK and went to GP around 2 months ago and GP said all symptoms pointed to b12 deficiency. My bloods came came with low folate (2) low ferritin and high b12 ( 2000+)Initially after commencing on folic acid 5mg and iron i did start to feel slightly better, however over the last 2 weeks my symptoms have returned and are just as bad as before, some are worse. Increased palpitations, Shortness of breath, dizzy, sore tongue and corners of my mouth, Fatigue, numbness in hands and feet, and the horrible strange sensations that my legs are wet and feels like water is running down the backs of them. I took myself back to GP today, however seen different doctor. She was not helpful in any way! She said that perhaps ' i was coming down with something, like a virus as there are loads going around' I said no, I am experiencing the exact same symptoms as last time. She listened to my heart and said it sounded fine and told me that if palpitations get worse to take myself to A&E. I said I was concerned that although my b12 was high that I still could be deficient. I said I have concerns over functional b12. So she said 'well what do you want me to do?' I asked if she could carry out some further testing, i.e IF, MMA etc and she said ' this is the NHS! If you want them you will have to go private. She has given me blood forms to repeat my folate and ferritin in 3 weeks time, by which time I would have been taking the folic acid for nearly 3 months. I am at a total loss of what to do next, I feel so unwell. Can anybody please advise of next steps or share any similar experiences? Sorry this post is so long , thanks
Low folate and high b12: Hi, I posted... - Pernicious Anaemi...
Low folate and high b12
Those are neurological symptons .The G.p should refer you to a neurologist.
Expecially the sensation of the running water .
Your mouth sounds like folate deficiency.
Your heart palpitations and shortness of breath sounds like low iron / ferritin .
The rest b12.
Is your vit D level okay?
Did you have any supplements to give the high b12 level ?
I'm no expert by any means, just a person who happens to have read some posts on forums. But I've read that B12 injections can deplete magnesium and potassium stores. I wonder whether one of them, especially potassium has been depleted making your symptoms worse?
Someone more knowledgeable will be along to offer some advice.
I havent had any b12 injections. I hope I can get this sorted. I'm just frustrated as I did start to feel better then symptoms returned?? Thank you for your reply
Oh, in that case it is just a reoccurrence of the B12 deficiency symptoms. Odd that it went away, although it may have been a temporary boost from correcting folic acid.Anyway, hopefully you can get this rectified with your GP. Good luck!
It looks more like way too much B12 than a deficiency. He said he has not been supplementing.
I would say it’s b12 and vitamin d deficiency. That doctor sounds horrendous, I would book an appointment with your previous one. I would also take a magnesium taurate supplement. If you are happy to take blood yourself and pay you can get tested at home with companies like thriva xx
if you have not been supplementing B12 then you usually see high B12 with hepatic or renal issues. There are other reasons for it and these things could cause your symptoms. You need further tests to rule these things out. I’d book another appointment and explain you want this looked into through further blood tests or a referral to haematology. Yes it is the NHS but the hypocratic oath requires that doctors do you no harm. Gaslighting you like this is harmful - maybe point that out. Let us know how you get on.
Kidney& liver function normal. I am going to make an appointment with the 1st GP again , she was more approachable so hopefully get to the bottom of things. Thanks for reply
Good luck. Your second GP was less than helpful given you have unresolved issues.
3 months is not very long for your body to recover from it being folate deficient. Do you not eat vegetables high in folate, such as green beans and other dark green vegetables? Do you eat meat and if so how about liver pate as this is a good source of iron?
So sorry to hear you're feeling so awful - and the GP sounds appalling😡!
There are various private blood testing companies that you can use to eliminate possible causes - Blue Horizon (via @privatebloodtestsonline - they do a comprehensive B12 assay but it's expensive), Monitor My Health (not too pricey - they do a full anaemia screen and Active B12 test - N.B. for accurate results, don't have any B12 supplements/injections beforehand as I stupidly did🙄!), Thriva, Medichecks, to name a few.
Your symptoms sound very similar to those I'm getting, despite E.O.D. B12 injections since last August. So frustrating. GPs are not being helpful for me, either. Have you had a full thyroid screen - and not just the TSH? I had a vit D deficiency a few years ago, which produced the same symptoms I get from the PA - definitely worth checking that out, too!
Wishing you all the very best - and do try to see the first GP you saw, who sounds very much more sympathetic and clued up! ☺️👍
Hi, thank you for reply. The gp i saw initially is off for a few weeks, she was really helpful so I intend to go back and see her. My thyroid function test is up to date and I take thyroxine ( been on it for 10+ years). I also take vit d. It's so frustrating when a doctor just won't take you seriously , we know when something isn't right and we shouldn't have to fight to convince them.
Good to know your Thyroid function and vit D levels can be ruled out - but no nearer to getting to the bottom of it for you, sadly ☹️ If I were you, I'd get an Active B12 test done as a starting point (- @monitormyhealth.org.uk include it in their anaemia screen - a pinprick test they post to you, which also includes ferritin, haemoglobin, transferrin saturation and folate - costs £49 but there might be a discount code if you search!) - if there is an issue there, hopefully the GP will be persuaded to do an antibody test for you. And when you go back to your original GP, I'd complain like hell about their colleague - it really is horrible when they don't take you seriously 😡!! Best of luck to you - hope you can soon be set on the right track treatment-wise and start to feel better☺️🤞
I think a haematologist is your best next step. I had to pay privately. But with your blood results you need a specialist analysis. I agree with what others say: see your original GP and never see the other one again. Low ferritin indicates low iron stores and almost certainly iron deficiency. You have to be nearing oblivion before ironD or anaemia are diagnosed with one-size-fits-all ranges. Take a look at haem/heme iron sources, notably Three Arrows Nutra online. And, not forgetting B12, as you know, high serum B12 readings do not address absorption problems. I inject every 3 days to keep my level way up otherwise I get the deficiency symptoms. But there may be other causes of high B12 which should be investigated.
Hi, thanks for reply. The gp is not concerned at all with very high b12 level. I will go back to GPs when the 1st returns after her hols. I am going to ask for a referral. I have received online test kit today so will get that done and hopefully get some answers. I have no trust in my gp practice as my mother in law was told by 4 different doctors she had vertigo when in fact she had a brain tumour and died 2 months later. I am looking into changing my gp practice.
Hi, I'm also from the UK. I have high B12 (not as high as yours though) and low ferririn and folate. The first I realised was when I struggled to give blood.
Doctors do not want to know. I've just done private tests with Thriva, should get results back tomorrow.
I have dizziness / light headed, heart palpitations, shortness of breath and a sort of balance / space awerness problem.
I was on some meds a while back when I had a back operation. The worst was gabapentin and I'm owndering if some of these have paid a part in my symptoms.
I'm due to give blood on Friday. I donate regularly, every 12 weeks. Although it's safe I'm wondering if I need to take a break from it.
Hi thanks for reply. Our symptoms sound the same, it horrible isn't? I have received my testing kit this morning so will get that done and hopefully get some answers. Hope you get sorted too.
If your B12 was so high, then why did they conclude you were short of B12? It is common for those of us on regular injections or people supplementing to have high B12. But if you were not supplementing, then high B12 can be indicative of some serious problems that your doctor should look into. pubmed.ncbi.nlm.nih.gov/146...
Hi, thanks for reply. They haven't said im short of b12. B12 is very high and folate low. Gp not concerned about high b12 or my reoccurring symptoms despite taking folic acid for 2 months and symptoms initially subsided then returned.
I would be concerned and if your doctor won't look into it, find someone who will. There are a lot of serious problems that cause high B12.
If you are not supplementing with B12 and your B12 is very high, a GP should be concerned. If you are also having B12 deficiency symptoms at the same time, the GP should be concerned. If you are having symptoms relating to nerves, the GP should be even more concerned. Curious would do !
Folate, ferritin and vitamin D are often lacking when B12 deficient. I had a thumping heart that would wake me up at night suddenly, would start thumping several times a day, sometimes making me dizzy. My GP requested that my heart be monitored for 24 hours.
I was found to have ventricular ectopics - I had 4,000 episodes in that 24 hours. This apparently is disconcerting not dangerous, doesn't lead to anything else and can go away suddenly too. The cause of it starting is not known. I was offered statins, but decided to see if it would go away on it's own. It gradually reduced and within a month or two, went. I did not need an appointment for a cardiology consultant.
So no known cause and no treatment needed - but peace of mind.
It does look as if you are having B12 deficiency symptoms with inexplicably high serum B12. Including neurological symptoms.
An MMA test can be done from primary care (although not all hospitals do this test) and renal problems should have been ruled out already. If your GP is unable to test your MMA at primary level, she should refer you to a haematology consultant as the best route.
Neurological symptoms would be best looked at by a neurologist, which can mean a long wait. This should not delay any treatment should the MMA test return a high result, though. It can tell you whether there is nerve damage and what areas are affected and why.
It might also lead to further investigation into what is causing raised B12 levels in bloodstream. Yes - a functional B12 problem seems a good guess, but until you find a GP who acts on this, it will remain a guess.
You need more than that. You need to know whether your B12 is able to reach cells and tissues, efficiently and sufficiently. Wishing you well.
Hi, thank you for your reply, I glad you are not longer having cardiac issues. I am concerned about my elevated b12 levels and expressed this to my gp. The gp said ' oh yes you've got loads of that swirling around' and told me not to worry!
Palpitations have decreased somewhat but I have horrendous fatigue and breathlessness and the numbness continues. I have received a blood testing kit today to get my active b12 level checked.
I can't go back to GP yet and the 1st GP, who was more understanding is currently on annual leave and don't really want to see anybody else. When I do return I shall be more assertive and ask to be referred.
It is hard, isnt it ?
When you get the rare one who either has some knowledge of B12 deficiency symptoms -or else is willing to find out what they can and wanting to help, it's so disheartening to be unable to get back to them. For chronic and complicated conditions, continuity counts for much. Always a gamble to take it elsewhere and start again, once you feel you are being heard.
Your's is a complex situation that really needs investigating further. Retesting, monitoring to check for direction of travel helpful for folate, ferritin, thyroid and vitamin D etc but for an off-the-scale B12 ?
I still think the MMA test might show whether your B12 is getting anywhere useful - and the active B12 test might show you whether all that B12 you have is of much use anyway, so also a good move.
I have not experienced that sensation of water running down the backs of your legs, but have only heard of it here. It does not sound like a symptom that would be found in many other conditions, and although uncommon, even here, is certainly likely to be neurological and quite specific. A neurologist should have some recognition of this symptom and its relationship to B12 deficiency, you'd hope. I saw a neurologist who sent me for electric nerve testing and a brain MRI but in your case, a spine MRI would be the likely request.
Let us know how you get on.
Awh thank you. I will keep you updated
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