I would like to share my experiences of low b12 in the hope that it may help others. I have been experiencing balance issues for a year plus mouth sores. Shortness of breath then followed, along with a swimming sensation every time I moved my head.
GP referred me to ENT vestibular clinic, nothing found. Blood tests showed levels of 406 then 518 so GP wold not consent to trial of b12 injections. Methylcobalamin sublinguals made balance worse. Sourced hydroxocobalamin sublinguals from Seeking Health in US. After only half a tablet of 1000mcg, the swimming sensation virtually went and my gait improved. Mouth very sore but so relieved about her other symptoms. I can now walk upstairs without needing to pull myself up by my arms and walking and moving around a lot steadier.
I have read so much about the benefits of methyl but not so much about hydroxocobalamin but in effect have had a similar amount of b12 that I would have got from one injection. My family and I still cannot believe the improvement in such a short space of time and I wondered whether my experience may help others.
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Highland49
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You obviously don't have an absorption problem with your stomach so what caused "low" B12 in the first place?
Is you diet lacking in animal products? Meat, fish, seafood, eggs, poultry and dairy produce. These are the only natural foods from which we derive B12.
Was your Folate tested? There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
We get folate from eating leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc.
I am not a medically trained person but have had Pernicious Anaemia (a form of B12 deficiency) for 46 years.
Thank you for your information and sorry to hear that you have had PA for so long. My diet was fairly good, with consideration to all the food groups. My general health has always been fairly good as a result. However, I have experienced a high level of stress for the last 18 months and prior to that, was prescribed PPIs which we know affect absorption. Recently I had started eating liver on a regular basis in an attempt to reduce my symptoms. This did not help but now appears to have raised my serum levels from 406 to 518.
I had taken the methly form of sublinguals (Jarrow and Swanson) but they also did not improve the symptoms. Tracey from b12d support group advised that I may have better results with hydroxyl b12. GP unwilling to prescribe b12 injections so I took the sublinguals to guarantee absorption. Now after only one tablet, my balance issues have almost gone, along with the swimming head and now the severe fatigue is reduced.
My folate is 19 ug/L and ferritin 37 ug/L
So it appears that I was doing all the right things with my diet but due to stress and absorption problems, the b12 was not being utilised. For years I have been sensitive to wheat and regularly have indigestion so perhaps this has played a big part.
It was interesting speaking to the PA Society who informed me that the serum blood test has been discredited but they are working in partnership to introduce a test to calculate the active level of b12, rather than merely measuring the serum blood level.
Hello Highland 49. You are correct that the serum test is unreliable. In fact I would go further than that. I would say that it is less than useless because it can give false results leading to under (or no) medication. A higher than normal level can be returned for a whole range of reasons. My wife has had severe live problems in the past. It seems that her liver cannot now store B12 properly and it floats around in her blood giving high readings. If to this we add the issue of the reference range being too low (Sally Pachelocks book is the bible on this issue) the problem gets worse. To throw fuel on the fire the NICE guidelines do not seem to adequately allow sufficient flexibility for GP's prescribing to symptoms instead of paper. GP's seem to be chary about varying from guidelines - probably as a result of an increasing mal-pactice litigation culture in the public. There is therefore both a quality and quantity issue with B12 management.
I went to war with the my wife's GP quoting the scientific reference material and arguing that her serum levels were meaningless. I was able to back this up incontrovertably. (I posted it on this site. It is hanging around somewhere). The GP conceded that I was right and backed down. My wife went from zero B12 provided to 1mg of injected hydroxocoboamin every 6 weeks. Previously I had been treating her myself with 1mg of injected methylcobolamin every 4 weeks - which kept her out of a wheelchair. I am watching carefully as this change is quite recent and I am not yet convinced that the GP's regime is adequate.
Hydroxocobolamin needs to be methylated by the body before it can be used as Methylcobolamin. I cannot see a direct reason that you should experience these adverse symptoms with Methyl. It is VERY non-toxic and the form that the body uses. I am inclined to question the quality of your source of Methyl. However - as it appears your body's methylation cycle is working well it is not really a problem - use Hydroxy. Don't be shy of dosage either. If your source is good you cannot overdose. Also don't forget the sound advice given by Clivealive above about folate. All the best to you.
Thanks for your reply. Yes it does seem that it is such a battle. I had hoped that the GP I saw (1 of 6 in the practice) would be more knowledgeable but everything I said wasn't picked on. You did very well to convince your wife's GP.
I did read yesterday that some people respond better to hydroxocobalamin if their nitric oxide levels are high. Perhaps I have had symptoms for years without realising and just putting it down to stress. The methyl ones I used were supposedly one of the best, either Jarrow or Solgar and all sublingual just in case I had absorption problems.
I hope that your wife's prescription does more than adequately treat her B12 deficiency. It is very fortunate that we have the support of the forum but how many people just accept what their doctor tells them then end up with a very poor quality of life?
Hi, Highland 49. I had my genome mapped ( 23andme, plus others available I think) and then analysed by Amy Yasko and other online resources.
I have a problem with methylation. This is not that uncommon, hence the proliferation of information about MTHFR on the internet. I have to take hydroxycobalamin, which is the least likely form to cause problems for anyone but also the most difficult to source and the most expensive. I also have to take specific forms of other B vitamins, including folic acid ( I take folinic acid), so multi vitamins are a no-no for me as they use the wrong ( cheaper) versions.
In the past I used sublingual, methyl based b12 and it did raise my B12 plasma levels somewhat but many years down the line, with better information available, I now take sublingual Hydroxycobalamin. My latest GP B12 test result was 303, so 2 weeks later I paid for a private, active B12 test.
I stopped taking my b12 a few days before my private test and my active b12 was 63% of my total, 263. No idea what the active B12 % would be in someone with normal b12 and not supplementing. My female GP is investigating why my b12 is chronically low ( first GP in 15 years to even acknowledge the problem). I am about to be tested for intrinsic factor anti-bodies. I do not have coeliacs disease. During this same 2 week period, my folic acid went from 8.7 to 15 due to my folinic acid supplements.
Do you have historical date for your blood tests? I paid for a copy of my notes and set up a spreadsheet of my results over the years. This has enabled me to see the extent of my nutritional and thyroid issues (how long they were ignored) and how they have changed since menapause and in response to supplements.
I mention all this in case it throws any light on why you have found hydroxycobalamin helpful and also, the usefulness of getting the active b12 tests done and finding out whether MTHFR is an issue for you. I am by no means an expert, just sharing my experience. I know you can source injections of Hydroxycobalamin on the internet if it turns out you get no joy from your GP. I think it is Japan where the bottom of the range is 500.
clivealive is right about the connections between iron, b vitamins etc. Be careful which supplements you take and/or check your genome
Thanks for your reply and information. I'm appreciating any extra information I can receive. It sounds like your GP is so much better informed. I did get a print out of my recent blood tests. When I saw the doctor on Thursday, I asked for a print out which she was happy to give. She looked through my previous b12 results and said that they are the best they've ever been but definitely think it's due to eating b12 rich foods. It's interesting that Japan do not have comparable rates of dementia to the UK.
Good luck with your further tests. I'm new to finding out about MTHFR but must look further into it. When I googled it the other day, it went straight over my head. I'm hoping that I'll be ok with the Swanson hydroxocobalamin that I've just ordered otherwise I'll get more tablets from Seeking Health in the US or will need to source injections here. I'm curious to know if my gp will reply to my letter which enclosed the problems with testing from the PA Society! Hopefully you'll post your results Sue.
How are things with you? I'm now self injecting hydroxocobalamin bought from Germany every other day and am steadily getting better.
As my shortness of breath hasn't improved much, I've regularly been taking folic acid and folinic acid but both give me headaches, sinusitis, insomnia and shoulder pain so I've eased off of them and concentrated on iron supplements and eating lots of greens instead. Have tried folate in a good quality multi supplement (nutri advanced) but these cause the same pains but not so quickly. So I'm a bit confused about the folate but don't want to not supplement just in case it slows down my recovery.
Once finances better (appalling last 12 months with husband's redundancy, my zero hours contracts and other high stress events) I want to pay for genetic testing but can't justify it at the moment. Maybe then I'll have some answers but in the meantime, any insight and advice would be greatly appreciated. Thank you.
Hija, well done you for getting those injections organised and glad to hear they are helping. I am having GP blood tests today, looking at b12 and others I think so later I will start taking b12 again and get some injections organised.... I so need it, my memory is very poor at the moment, particularly when there is a little bit of accompanying anxiety. Came across some other interesting work on Memory issues by an American dr called Amen. Website is worth checking out.
I have been really focusing on my diet; now gluten and added sugar free, no cakes or biscuits, lots of blueberries and raspberries for the anti-inflammatory properties. Low carb veg, especially green leaves, cauliflower and other fruits, adequate protein from mixed sources, grass fed sausages/liver, organic walnuts, pistachios, sunflower seeds and oily fish, organic plain yogurt, occasional cheese, ghee coconut oil/flakes. i'm eating average 50% fat , 30 grams fibre and 8-9 portions of fruit and veg!
I'm loosely following the protocol of a lady called Dr Wahl, a former MS patient who has cured herself with diet and who works with auto-immune patients. I know it all costs a fortune but I sold my house and am renting, so I am using my capital to get well!
Can you explain some more about your folic acid/follicin supplements? did you try them separately? Could there have been something else influencing your headaches?
It sounds like you're making some good plans and changes. I also had a review of my diet and considered, other than needing to eat more greens, less gluten and liver, that my snacks were too samey so I now have sunflower seeds and dried apricots. I was having too much cheese as it was quick and filling.
Thanks about the suggested reading on memory issues. I support people with dementia and also volunteer for a national charity so am always on the lookout for research.
All the best with your return to b12 and injections. With the folate and folic acid, I started on 400 mcg of folic acid, just cheap ones. I noticed headaches, sinusitis and shoulder pain after about 5 days so came off them for some days. Then messed about with the dose, taking a few tablets over the day. Had a break then tried folinic acid but same symptoms after some days. Took multi with folate and have headache with those too so have just skipped them altogether with last couple of jabs.
My main problem at moment is breathlessness, feel like I'm suffocating so have to take a deep breath which sometimes clears it before the feeling builds up again. Marz on one of my other posts thought my thyroid was struggling so have sought advice from b12d charity and have had blood test today for thyroid panel. Fed up now, preferred the balance and swimming head sensation!
yes, Marz knows her stuff. I'm sure she will have told you to post your thyroid results, with ranges, on thyroid uk forum, when you get them. Folic acid is bad stuff. Unfortunately, pretty much all multis use the cheapest ingredients, one of which is folic acid. Have you suffered with headaches prior to trying follacin/folic acid supplements?
My dietary changes are partly about trying to make sure I get loads of omega 3 in my diet and I also supplement. What does your Dr say about your breathlessness? Sounds like you are having some pretty extreme symptoms. Best wishes with it all, Sue
I seem to tolerate the folate in the nutri advanced multi if I just take that on injection day so not noticing the headaches so much. It also contains the bisglycinate version of iron. I see on this forum that others don't take folate and iron every day so maybe that's the secret 😀
I've recently changed from flaxseed oil to Udos ultimate oil blend as it has both omega 3 and 6 and the bonus is it works out cheaper than my old one. I do wonder though Sue that things we've supplemented with for years have disguised other symptoms and kept other things at bay. The oils have really helped my dry skin over the years but did it stop me seeking help before if I hadn't found something that helped?
Was hoping to get blood results back yesterday. The doctor that I saw the second time this week doesn't work Fridays but will pop in on Monday and get print out of all my results. I'll get there but this air hunger thing is still being a nuisance.
regarding the iron, I read an article, which i can't find the link for, which unequivocally stated that alternate days and lower dose was best. It was being talked about in terms of Doctors should be changing their prescribing habits. Apparently, as too much iron is so dangerous, the body secretes an enzyme, from the liver I think it said, that is necessary for absorption. It is only secreted in specific amounts and the liver does not make more of it if there is more iron than needed. The excess iron has to be excreted. I wonder whether all nutrients are controlled in a similar way, seems logical. Anyway, less is definitely best. If you think your iron supplements are a problem, have a look at Spatone
I am not a trained professional, just trying to get handle on it all from various sources.
I didn't find them as good as the injections but they were helpful in confirming that B12 deficiency was at least partly causing my symptoms. I took half a tablet each morning but by the afternoon, my balance problem and fatigue would worsen so I needed the other half.
Once I'd started on alternate day injections, my balance problem settled down. It's still there but easier to live with. I mainly now need to sort out the fatigue and the shortness of breath!
Thank you Highland49. Yes, at least the B12 is easy to fix. Fatigue can be from brain inflammation according to the experts on American online health summits. They advise taking supplements that cross the blood brain barrier for that, I have some curcuimin essential oil but haven’t tried it yet. in my opinion, it would work better than powdered capsules.
I’m wondering if the best place to get an hydroxycobalamin injection is from the b12.com site ?
You're very welcome. Some days I find it overwhelming all the information out there. I just sent a message on this thread to Sue as I'm having problems with folic acid.
There's a Vitamin B12 Share The Cost group on Facebook. Someone regularly places the order with versandapo in Germany and you all split the postage. You just comment how many boxes you need (sold in 10s) and it works out less than £1 per ampoule. We just can't refer to buying or selling only sharing! I've done this a couple of times now. I bought the needles from Medisave but in the fb group, one of the members sent me a starter kit.
Yes the b12d charity can help too. There's also another fb group, New Beginnings B12 Deficiency Information and Support Group which i think is con necessary to the charity. They also have loads of files of information plus you can search previous posts for information.
For me personally, I drink coconut water for the potassium, iron bisglycinate or ferrous fumurate, magnesium citrate plus Epsom salt baths, some folic or folinic acid and more recently, a multi from nutri advanced that contains folate. I don't take vitamin C separately but wondering if I should to help iron absorption. I just take with juice and have lots of fruit and veg.
Yes I feel like I'm studying for a degree some days! Take care and hope you're feeling better soon.
I take iron sulfate & biglycinate with an orange or grapefruit for extra vitamin C & added citric acid to hopefully improve digestion & absorption. Fumarate causes digestion issues for me, & isn't a natural form: healthunlocked.com/thyroidu...
Thanks for that BadHare, I'm finding the fumarate gives me heartburn feeling but was wondering if bisglycinate wasn't doing much for my shortness of breath. I'm going back to the bis one but having a real problem with shortness of breath so asked GP to do a thyroid panel. The lovely Marz from this forum suggested that my thyroid was struggling a few months ago but too much to consider at that time.
Hope the biglycinate perks you up nicely. My ferritin was a tad low on just ferrous sulphate, hence adding a bit more.
Marz knows her stuff, so if she said to check your THs, it’s a good idea to do so. Low stomach acid is common, so try some fruit or ACV with your supplements for a natural boost. 🍊
Hi melodie, just thought I would chip in. I use 5000mcg hydroxycobalamin ( used to use 5000 methyl) sublingual. I went for these to assist with absorption ( no issues there though apparently, except effects of Hashimoto's). I read some research which I seem to remember said that even if the b12 isn't absorbed in the stomach, 20% gets in through the intestines. I think our bodies make our own B12 in the intestines.
I did find in the past that the subs raised my B12 but we're talking going from 180 ish to 300 ish. I wasn't taking them religiously however as I had no clue at the time how important it all was!
I feel much better for taking sublingual methylcobalamin & being at the top of the testing range, as I feel wiped out & shaky without them. My levels were low in range, despite high dietary intake of B12, plus nutritional yeast or a B complex.
I've made a few shopping mistakes & had issues when I swapped brands, & inadvertently bought 500 rather than 5,000mcg, & even more stupidly bought cyanocobalamin, but at least they taste nice.
I'm finding it all an education and so much trial and error. Sadly after trying two different methyl sublinguals, they did nothing but I do find it fascinating how differently we react to medication and supplements. I've got plenty of opened tablets in my medicine cupboard! Pleased you're feeling better.
It is, indeed. Someone on TUK has a reaction to my preferred sublinguala, & I felt wiped out on hers. Good job we have choice & help from these wonderful forums!
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