I was diagnosed with Vitamin B12 deficiency (diet related). Blood level was detected at <148pg/ml and was treated with 6 Hydroxocobalamin injections with the last one a week ago. I am feeling even more fatigued since the injections completed, with recurring leg and back pain.
The worrying thing is that the blood test this week has come back with B12 > 2000pg/ml where the lab hasn't even provided the value.
Is this concerning and what should I do from here? Planning to speak to the GP asap.
Written by
csethi
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Scientist, not medic. The lab hasn't given you a number because to do so would double the cost for no benefit. It's irrelevant.
It's entirely expected that if you measure it after a few loading doses, it's going to be raised, and testing it when they know they've been injecting you is yet more wasted NHS resources.
The only time it could be argued is if you're allegedly self-injecting and they don't believe you're actually doing it.
If between you, you know it's diet-related then oral B12 therapy should do the job, but the time to measure the serum B12 is a few months after you've had the last injection.
Good morningAs everyone above has said.. B12 values will be high once on injections.. it actually states in the NICE guidelines no further testing is necessary
Do you know for sure your deficiency is diet related? Are you vegan?
Do you know what your folate, ferritin, potassium and vitamin D levels are?
Being vegan can cause B12 deficiency.. so it could well be due to diet then. Were you supplementing at all? However the intrinsic antibody test is only 40-60 % accurate... so a negative test does not rule out absorption problems
Your vitamin D, folate, ferritin are all at a decent level... your potassium could do with being a little higher
The fatigue you are still feeling could be down to your body healing and producing new red blood cells
Do you have any other symptoms as well as fatigue?
Thanks again, I wasn't supplementing at all unfortunately.
Initially symptoms were tingling and headaches which have settled. But now have a lot of fatigue (hard to get out of bed), leg pain that gets better as the day progresses, and some heavy headedness/brain fog...Does any of this sound familiar?
How should I go about increasing Potassium? Can diet improve this?
Thank you very much once again. Very kind and helpful.
Final question - do you expect the reversal of the fatigue / sleep issues to take a while? This just appeared out of nowhere a few weeks ago and I didn't have any issues before then!
I think it's different for everyone... I couldn't make it through the day without having a sleep at some point.. I still feel fatigued but most days I manage to stay awake
I've actually felt better since I started high dose vitamin D with k2 and magnesium
Just been thinking... your blood results..Vitamin D was low at diagnosis but now corrected to 90 with loading dose.
Folate is 12 ng/ml.
Ferritin is 76 ng/ml.
Potassium is 3.6 mmol/ml
Those were before your injections?
Having B12 injections draws on each of those above to heal.. so although your levels were acceptable then.. it may be worth getting those checked again
The B12 Society recommend taking co factors while on injections..pic attached
Diet related deficiency I tested negative for the auto immune diseases thankfully. Yea apparently your suppose to inject every other day until symptoms decrease then reduce injections I just couldn’t do anymore. When I was injecting I was getting racing hearts and feeling like I was being choked. Not sure what’s going on. Thought it was my potassium but my lowest checked was 3.7. Even with eating and drinking loads of potassium foods still didn’t help my potassium level.
I had my potassium checked at my gp clinic in the morning time it was 4.5, 1 and a half hours later it was 3.7 in emergency room . So strange
I’m not sure the doctor done a few which checks whether it’s caused my autoimmune diseases but negative so malabsorption and diet related which I think can be caused by poor gut health but I’m not sure I started a probiotic anyway.
I’ve been a poor eater my whole life never really ate fruit veg or meat etc. all junk
I have pounding heart 24/7, tight muscles around ribs, back, neck, shoulders, chest, throat and under sternum it’s very debilitating, really restricts my breathing bad it’s like I can’t let my breathe out constantly holding it in. It’s horrible . Can’t climb stairs I’m having to sleep on my sofa. Although I could climb the stairs before my injections it’s a tricky one.
Feel there is something else wrong somewhere, a lot of people have said it sounds hormonal or biochemistry . So I’m waiting to get oat test done and mycotoxins test to check for mold.
I'm so sorry to hear and wishing you recovery. If you have private insurance, it may be worth speaking to an Endocrinologist to check hormones and biochemistry.
Have you checked your calcium levels? If calcium is high, that can also lead to similar symptoms.
With B12 diet related, my GP said guidance is 6 injections over 2 weeks, which is what I have got at the moment...
no insurance no, I’m seeing a nutritional naturopath who is doing the oat test and mycotoxins text. All so expensive though. Anything to get your life back though or at least try.
No. its not concerning. Thats what it should look like after loading doses. Testing B12 serum after treatment begins is not useful to guage the efficacy of treatment, for which symptom relief is the only useful marker. There is no risk/danger/clinical significance to having a serum B12 this high when it is as a result of B12 deficiency treatment. Anyone who tells you otherwise does not know very much about B12 treatment. This might include doctors, specialists etc, whose opinion you might otherwise trust. They are used to the idea that too much of anything can be harmful. In a lot of cases this is true. But not for B12.
Thank you Technoid!Given my deficiency is almost certainly diet related, is there any benefit in further supplementation above the 6 injections that I have been given to help the symptoms?
If it is diet-related - then supplements would depend.
You have, at the moment, above measurable range B12 - exactly as expected after loading injections. Your body will get rid of what you don't need - in urine.
Depends whether or not you are still following a vegan diet - or have introduced eggs, fish, meat into your diet now. If you are having sufficient B12 as "extrinsic factor" (in your food), this should keep your B12 levels within range.
If you are still a vegan, you would expect levels to drop down over time until you are again deficient -unless you take oral B12 supplements daily to ensure levels are within range and at a level that keeps you well.
If I were you, I would start taking the oral B12 supplements now either way, just to see if that alone will give you relief from your symptoms. You could suggest this to your GP -but even more useful if your GP suggests it to you. Either way, if your GP is aware that this is your intention, then if no relief can be gained by oral supplements, this option has then at least already been eliminated .... and more importantly, that will be on your medical record.
It would be a shame to have to have B12 injections unnecessarily - but bear in mind that vegans are as likely to have PA as anyone else.
I have added dairy to my diet now (as I was before Vegan) and GP has suggested oral supplementation not needed if that is the case. They have also suggested that blood tests are repeated in 6-8 weeks.
I do have the 1000ug Oral supplements (Cyanocobalamin) available so I can take them but just unsure if of any benefit given the serum levels are already high...
It takes aprox 4 month clear of all B12 supplements/ injections before you will get an accurate blood test result... So in 6-8 weeks values will still be high regardless
Have a look at B12 food-lists. Think eggs better than cheese, some cheeses better than others, milk and butter not so useful.
There are of course cereals (such as special K, cornflakes) with added B12, but check the packet for ingredients, not all the same and can alter percentages.) Also non-dairy "milk" that has also been fortified with B12 (eg kokomilk). Very much worth checking until used to products and ingredients that suit you and help you.
As advised by Lincsangel1 , 6-8 weeks may not be a useful end-point for monitoring. I would suggest that you do not take the oral supplements you have, unless the GP is aware that that is what you are doing.
I think it is difficult for anyone else to advise you, as we are all different.
So much easier if you have a GP that you trust, even if they are not B12 experts. If they are decent GPs, they will try to help and are willing to learn.
I thought that supplements would help keep the levels high ? If able to absorb okay.Shame the doctor didn't suggest this.
Why wait for a oral trial as harder to treat severe symptoms with b12 tablets if levels drop again .
See saw effect not good .
I had s trial on b12 tablets as gp suggested it.
The aim for me was to reduce injection frequency.
She prescribed 50mg b12 tablets??
3x a day
( guidelines sent to gp's!)
Did nothing .
I upped it to 1000mg a day buying a spray and 'organic' capsules with methylcobalabin 500mcg.
Meticulous notes made
Nothing
She never stopped b12 Injections I wouldn't have agreed otherwise.
but once reached 2 weekly which I'd been on for a yesr would not increase again.
She was under alot of opposition.
I felt alot of pressure to reduce b12 Injections as she did.
Thought of as an achievement to reduce injections .
Of course the achievement is getting well!!!
At least as cheryclaire says its on my medical record
the trial of oral b12 failed.
I was very disappointed at the time.
If your cause is dietary you should get to maintain your b12 by tablets as long as the Injections haven't overridden the natural process of using b12 from food.
This also needs research as if 'put on ' injections and thus happens how cruel to stop them.
My sister managed on oral b12 to raise her levels.
No Injections.
A vegetarian for nearly 40 yesrs .
She stopped absorbing enough from her diet post menopausal.
I scared hef she acted
My friend wax a temporary vegan.
Got ill.
6 loading b12 injections.
But then managed to maintain on oral b12.
Also changed her diet .
She didn't seem to notice anything from the b12 injections.
I found this so odd as made me really ill.
But her rib pain and fatigue went .
Caught' in the bud '.
I was so suprised it happened at all after her knowledge of what happened to me.
We all think at times
'Won't happen to me '
Perhais why caught so soon.
Again 'clean eating '
Fad diet regimes
Didn't affect her before.
A vegan diet did with the extras of hormonal changes .
As totally against vitamin supplements.
Her vegan friend was super healthy for a couple of yesrs .
I imagine before b12 stores depleted .
A big shock when got very ill.
Horrid.
She still s vegan has b12 injections .
I think my friend feels very relieved she managed to turn it round within a couple of months .
Also changed her diet.
A good Gp .
B12 was on the first blood test done ✔ and acted on swiftly the day of result.
Thanks Nackpan!Can injections override the natural process of absorbing B12 from diet?
I'm totally happy to start supplementing if required, just that hoping my diet is now no longer Vegan and therefore will naturally supply enough B12 going forward...
To my knowledge, injected B12 makes no difference to normal dietary absorption.
csethi , I had a dietary deficiency also. I was and still am vegan. But oral B12 tablets, although they had an effect, were not sufficient for me initially and I needed injections, twice a week for about 5 months. I backed that down to once a month and after 6 months was able to eliminate injections and reduce supplementation to 100mcg 3xday. The minimum B12 needed for maintenance in supplement form is 100mcg once a day but with deficiency symptoms its wise to stay well above that - at least 500mcg to 1000mcg once a day for some time to ensure your body has all the B12 it needs.
It sounds like you are no longer vegan but if you do wish to try it again, I would consider a regular daily supplement (that you never skip) like:
Along with B12 and Vitamin D, as a vegan, you also need to pay some attention to Iodine, Selenium, Iron, Calcium, Zinc and Omega 3 EPA/DHA. The above supplements mostly take care of these, as long as your diet is otherwise well balanced and varied, mostly whole-foods, minimize added sugars and salt, healthy oils like rapeseed or olive oil, around 50% fruit and veg, 25% whole grains and 25% protein sources like legumes. Plant milks you get should be fortified with Calcium and no added sugar - Soya is the closest to dairy milk for protein, the others like oat, almonds, etc are fine for tea and coffee but not the best breakfast milk choice. Getting Vitamin A mostly means looking for something orange (i.e containing Beta-Carotene) in most meals. Put this together with an app such as the daily dozen from Dr.Greger and you should be on the right track.
I did not have the best diet prior to my deficiency but have spent the last year studying up on various nutrition courses (e.g. from Cornell) and nutrition course textbooks. My health has improved substantially and although I have some lingering issues they do not slow me down too much. The fatigue/weakness can take a while to improve, I had a lot of muscle damage incurred during the deficiency that took many months to improve and was at its worst right after the first injection (I think its the nerves awakening to the damage that I was not aware of previously). Almost everything seems to improve in time but it can be slow and takes much patience. Push too hard too soon and you can regress a bit, so moderate it even when you get good energy back again so as not to crash or regress with new injuries.
"I do trust the GP and he has advised no Oral supplements for now so I will avoid as you suggest. "
I advise you to be very careful with nutritional advice from doctors. They receive very little training in nutrition so you are typically not receiving an expert opinion in this area. The reason my deficiency became so severe was from following catastrophic advice from a GP who mistook a B12 deficiency for an overdose (which is not possible) and gave dosage advise which, if I had continued it, would have resulted in permanent disability, at a minimum.
Your B12 serum level is not relevant to supplementation. Once you stop injections, your diet should include B12 in the form of food or supplements, that means a minimum of 100mcg a day if taking supplements but 1000mcg a day is safer in the initial treatment period and while severe symptoms persist . You cannot overdose on B12. If your doctor expresses concern that your B12 level may get "too high" from supplements, this is a sure sign that they have not the first clue about B12. Which is fairly common. Expected even. But just be aware of that.
Thanks Technoid, really appreciate your ongoing help.
My situation sounds very similar to yours, diet related and manifested all of a sudden in last few weeks. I have been given 6 injections over 2 weeks, and had a blood test since then.
Serum Folate is currently 12 ng/ml
Ferritin is 76 ng/ml
Potassium / Magnesium are upper end of the range
I will restart 1000mcg/day Cyanocobalamin supplementation. Have a chat with the GP on Tuesday to ask for EOD injections.
What in your experience and hindsight really aided your recovery? Was it the injections for 5 months?
My current symptoms are a lot of fatigue in the morning (that gets better as day progresses) and weakness (even doing simple tasks), and nausea. I was otherwise a fit 30 year old individual until a few weeks ago!
How did your fatigue improve since diagnosis and do you still have any lingering symptoms?
This forum was essential to me in maintaining my sanity while I suffered through the most severe deficiency symptoms while doctors denied there was anything wrong, insisted it was all in my head and omitted critical information from my medical record, thereby misleading other doctors and specialists. I learned many things here that helped me understand what was needed to recover, what things could be useful for supplementation, what could be detrimental or harmful etc, how much use the average GP could be 🤣.
I did extensive research into B12 absorption and metabolism mechanisms along with similarly extreme levels of research from all credible sources on the pros/cons of a vegan diet - what was needed nutritionally to be healthy and what foods were most important to get, how often etc. One of the best sources I found was veganhealth : veganhealth.org/daily-needs/ . This sites contains guides written not by doctors, who are largely amateurs when it comes to nutrition but qualified registered dieticians who have put in years of study to accumulate this knowledge. I came to the realization that my diet had been poor in a number of ways - mostly lacking variety and several other nutrients which I had ignored such as D, Iodine, Selenium,Calcium, Zinc. I made major overhauls to my whole diet based on the research and tested my intakes with Cronometer, so I could know for sure if I was getting enough of X, Y,Z. The daily dozen app is a great base, which along with info from the veganhealth site, it is hard to go wrong if you really follow the advice properly.
Since I now understand the B12 absorption mechanisms I now understand the way dosing works, since it is counterintuitive. For example, you can take B12 at 5-10 mcg 3 times a day, 100mcg 1xday, or 2000 mcg 1xweek. These are all more or less equivalent dosing strategies which would all work fine for someone with working intrinsic factor (although not for those with PA). This is because of the 2 absorption mechanisms, intrinsic factor, which can absorb up to 1.5mcg but only every 3-4 hours, and passive absorption, from which you absorb 1% of the dose. Thats why a weekly dose is 2,000mcg, because you take the RDA of 2.5mcg, multiply by 7 for a weekly dose, thats 17.5mcg, then multiply by 100 to see how much you need by passive absorption to be sufficient - thats 1750mcg - round up to 2000mcg for a safety buffer. It makes sense, but only when you know the mechanisms, otherwise its black magic. Without this knowlege, you might assume that a single weekly dose that is 100 times the RDA (250mcg) would be sufficient. Its not, but its not intuitive or obvious that its not sufficient - this was the mistake I made that resulted in my initial deficiency, which was then exacerbed by idiot doctors saying that 250mcg a month should be ok - its not, but because they were as ignorant as I was, but I assumed them to have some expertise on this and I now count myself lucky to have escaped permanent disability from listening to these clueless idiots.
I knew about the importance and consequences of B12 deficiency before becoming vegan (but not to the lowest levels of detail I now have) , so the serious consequences of the deficiency were therefore not a surprise to me (although the doctors were quite blasé about the whole thing due to ignorance). What I was missing previously was the knowledge of how absorption works that is needed to understand the dose and frequency of B12 that are adequate. The doctors I saw about my deficiency symptoms unfortunately knew even less but were happy to give confident and completely unsafe advice that would eventually have left me disabled or dead if I had followed it for the rest of my life.
I did not expect things to worsen so dramatically after treatment started, the severity of which surprised even the specialists, but the experience of others on this forum helped calm my anxiety that I was not unique and that this experience was normal with severe deficiency and part of the the healing process, difficult as it was.
I had nausea that was just horrendous early in treatment, dizziness/vertigo, but that all eventually went away. The first 3-4 months of treatment were the worst, in fact, my symptoms were worse during that time than at any point in my deficiency. Weird, but true. Maybe it was the folic acid, but thats another discussion 😅
I do not have severe remaining symptoms, I do not have any significant physical or mental fatigue anymore, but I do find my muscles still do not have the physical stamina of previously, they are greatly improved but still a long ways from where they were 4 years ago for example. My cardiovascular fitness is great but my muscles tire out and give up long before I even get out of breath Gut and digestion issues completely resolved after 4-5 months. My stomach is back to its formerly bulletproof self, in fact, I think it might even be better than before because of the dietary variety is better, lots of fibre to feed the gut beasties and getting all the right macro and micronutrients.
Other lingering symptoms are aphasia : mixing up or skipping words, spelling problems, when typing, reading, thinking or talking. Some clumsiness seems to persist. Memory has improved greatly, especially in last 6 months. Also motivation, mood etc. I had quite bad hand tremor and that has improved a lot, it is barely noticeable now - my hands were the most painful thing when recovering initially, excruciatingly painful. I still have soreness in the morning and joints popping now and then but all improved a lot since I started treatment. I have lingering neck or upper back pain if I sit too long but I blame a desk job and my previosly poor movement practices partly for that. Not needing injections was a massive difference to my quality of life since my hand tremor meant I could not self-inject and had to travel to a clinic twice a week.
Overall, I really dont have a lot to complain about especially compared to the struggles of most here. I am very grateful for the advice and support I received here and I can honestly tell you that I might not be alive today if not for the support I had from people on the forum that helped me get back to health.
Thanks for your detailed response. This is really helpful.
In terms of the oral dosing strategy, did you take folic acid with B12 because your folate was low or for a different reason?
My folate has surprisingly went up from 6 to 12 in last 3 weeks since the injections (not sure why!) but is definitely not in the low end of the spectrum at the moment so wondering if I still need to supplement with folate/folic acid.
I will ofcourse also ask a Doctor but as you say, not all are well informed.
I was prescribed the folate by the treating specialist because folate is very important for proper B12 function. And it is, but supplementation should happen based on whether you need extra folate. I get 2.5 times the folate RDA without any supplementation so it just doesnt make a lot of sense for me to take additional folate. Many take 400mcg (twice the RDA) as supplement but my diet is roughly equivalent to that, without any supplementation. I was not folate deficient at any stage. I continued to take the folate for many months as I was precribed it. But looking back I think I should have taken it for a for a few weeks at the most and possibly did not need it at all. There are many factors in my recovery so although I felt better when I stopped the folic acid 4 months in, it is difficult to be sure if that was the issue as I had lot of supplements going on at the time!
Your folate is getting better but I dont know all your details so I am reluctant to directly advise you to change dosage if it would be contrary to doctors advice. But if its as high as 5mg a day, that is usually a short term dose for deficiency treatment and generally not advised long-term. 400mcg daily is safe but I found even that was way too much for me- with the amount of folate in my diet, there's just no reason for me to supplement.
Here is a paper that looked into folate status in a particular case, pre and post treatment for B12 deficiency : onlinelibrary.wiley.com/doi...
They found that RBC (red blood cell) folate was lower before treatment but increased afterwards. The proportion(percentage) of overall folate in the 5-MTHF (methylfolate) form was higher before treatment but reduced afterwards.
This is the folate or methylfolate trap, where folate becomes trapped in one particular form, in the form of methylfolate (5-MTHF). You will often hear that this is the active form of folate but in fact there are other crucially important folate forms which folate is metabolized to in the folate cycle. Without B12, the folate is stuck in methylfolate form, causing the folate cycle to become locked up, like a stuck gear. When B12 enters the system, the methylfolate is reduced to normal levels as the folate that was stuck in that form moves along in the natural way, to the other required folate forms and overall folate may go up as long as adequate folate is still being ingested and absorbed.
So your response seems physiologically normal to me and comparable to this case in terms of how the measured folate is corrected.
Ferritin reduction would be expected because B12 deficiency can cause red blood cells to be improperly formed. Once B12 arrives, these misshapen red blood cells are replaced which requires iron (the heme in hemoglobin). This can draw on ferritin stores, so good to make sure you're eating high iron foods. Non-Heme iron absorption is assisted by Vitamin C and Beta-Carotene.
Thank you for your time and replies on this forum, it has helped a lot.
After my 6 NHS B12 shots 2 weeks ago, the tingling and brain fog has gone but I'm left with extreme fatigue, leg pain and mild tinnitus. I've been off work for 4 weeks (when all this started) and need to resume soon...but the symptoms are pretty debilitating at the moment. Hopefully they mean that the injections are working...
All antibody and auto immune tests are negative so the deficiency highly likely to be diet related.
I have Insurance so have managed to get an appointment with a haematologist later this week and will ask them to do MMA and Homocysteine tests (Ferritin, folate etc all came high normal last week) and provide a treatment plan (further injections via NHS or privately if needed).
Would you recommend any other things to ask them please? Are my symptoms above considered 'neuroigical' warranting injections EOD under NHS?
Thanks once again, this forum has been very helpful
It does seem that if 'system ' particularly broken I. e working but not efficiently the injections of high levels straight into your bloodstream readily available takes over.
I can only liken it to a newly diagnosed type 1 diabetic.
Started on insulin the the pancreas randomly decides to kick in.
So hypos occur.
Once it(pancreas )stops completely the condition csn be controlled properly by injected insulin.
Brittle diabetes term describes this.
If your low b12 is caused solely by lack of it in your diet
The 'system ' of processing is not broken. Or struggling.
It's simply not ingested in high enough amounts .
I can't see this(injections taking over ) happening in the sane way once replete of b12 as the stores can then be utilised as before once enough in your system.
I'm not a scientist or medic.
Blatantly obvious you may chuckle 😃
This is through reading.
Observation.
Years of listening of explanations.
Posts on here.
There was 'a paper' posted on here about it.
At the time had no idea how to save it .
I've remembered it as made sense .
Also wrote it in my diary.
The diabetic scenario is my husband.
And stories read in the past in The Balance magazine. Diabetic UK .
Until more research.
More interest
We have to act on response to b12 treatment.
Clinical skills
And other things ruled out .
I personally know of 2 examples I've given of dietary causes resolved by oral b12 long term.
No other medical issues going on or other risk factors.
Operations
Medications
Parasites
Alcoholism
Ect.
Other factors if stopped csn reverse the b12 deficiency.
I wish ,like all on here there are more answers .
More definitive tests.
Until that time medics need to keep their minds open.
I was left untreated for many years because my GPs didn't recognise it was B12 deficiency, all serum b12 results apart from one were well within range eg 300 - 500 ng/L
When at my worst I had over 50 typical symptoms of B12 deficiency including many neurological symptoms, my mental health was also affected.
It took weeks even months of very regular injections to start to show improvement.
One symptom that improved more quickly was the high pitched tinnitus I had. I still have other types of tinnitus and suspect this is permanent from being left untreated for so long.
When the high pitched tinnitus comes back I take it as a sign I need more B12. I need far more B12 than NHS will give.
Some UK forum members turn to treating themselves if NHS treatment is not enough.
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, some as a last resort turn to self injection.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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