Hoping people can tell me if some weird symptoms I'm having are consistent with B12 deficiency. I'm in the UK London.
I have started getting burning skin sensations - feels like someone applied deep heat when I wasn't looking. I get these on my forearms, shoulders, patches on my upper back. They can last seconds to an hour or so.
The picture is a bit complicated by suffering from a vitiligo flare causing itching and possibly burning sensation. With treatment the itching has gone.
I have pain in forearms and hands which I suspect is linked to too much phone use. So can this produce burning sensation on forearms?
At night and sometimes other times my hands feel odd - almost stiff although when I move them they are not stiff. And as if they somehow got slightly bigger.
Evening and night my lower legs feel as if someone is brushing the hairs on my legs. Or as if I have some sticky substance on my skin. I have always had restless legs syndrome but it's not this.
My B12 level is 304 ng/L (range 200—910). This has increased from a level of 208 three months ago following oral supplementation with a multivitamin.
My ferritin and folate are also low end of the range. My folate has risen since supplementation, but my ferritin has fallen. Currently at 42ng/L (range 10-200).
I'm awaiting results of intrinsic factor test.
I also have slow transit constipation for which I have to take a lot of laxatives. My movements are usually approaching diarrhea soI wonder if this affects absorbing of some things.
I'm always tired, and if I'm walking or on my feet too long I get widespread muscle joint aches which come on quickly. I often have to take paracetomol and go sleep for a couple of hours.
Sorry this past is so long.
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AlwaysTiredxxx
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Yes many of your symptoms are due to b12, and recovery.
Just to reassure that burning sensation I think is related to your nerves beginning to wake up, my partner was told to take multi vitamins 4/5 years ago for b12 deficiency, didnt agree so went on to 1000m tablets, now on injections, and he is experience the same thing, kept him awake most of the night. I have been through this years ago, it's a rollercoaster and by no means pleasant.
He is very often snoring away on the sofa, where at the moment he spends most of the day, I know eventually he will improve, but I now injecting him b12 at home (bought from Germany) because the NHS are ignorant at dealing with B12 deficiency. You have to be very very lucky if you come across a g.p. who will even give you b12 injections let alone administer them often enough.
I am sure you will read many others with the same problems and if you look at sleepy bunny s replies this will give you masses of information to read through.
UK guidelines suggest that people with the symptoms of B12 deficiency should be treated even if serum (total) B12 is within range.
If treatment for B12 deficiency is denied, delayed or inadequate, the risk of permanent neurological damage is increased.
Vitiligo is a condition that is commonly associated with B12 deficiency.
It's an auto immune condition and having one auto immune condition increases the chances of developing other auto immune conditions.
If you have symptoms consistent with B12 deficiency and your diet has B12 rich foods, I would expect you to at least be tested for PA and Coeliac disease...two auto immune conditions that can lead to B12 deficiency, there are others as well as these two.
I'm going to post a lot of info below and I suggest you take at least a week to work through the info so it's not so overwhelming.
Some links may have details that could be upsetting so you may want to read through it with someone else.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease. Check GP follows recommended diagnostic procedure (some don't).
Internal parasites such as fish tapeworm can lead to B12 deficiency.
Have you ever eaten raw or uncooked fish eg in sushi, smoked salmon etc.
Have you ever lived/stayed somewhere where internal parasites are common?
One clue that might indicate a parasite is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found with results for Full Blood Count (FBC)
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)
Local B12 deficiency guidelines in UK
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links if you have the time and energy.
Some local guidelines have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or "name of CCG/Health Board B12 deficiency treatment algorithm"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to to or a copy of local B12 deficiency guidelines.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum as to how B12 deficiency is managed/diagnosed.
Keep an eye on your local guidelines for B12 deficiency as they get reviewed every few years and this could affect your treatment. There are moves across UK to give high dose oral B12 as an alternative to B12 injections. this is often promoted as easier for patients but cynical me thinks it's a cost cutting measure.
Misconceptions (wrong ideas) about B12 deficiency
B12 article from Mayo Clinic in US (aimed at researchers/health professionals)
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxocobalamin link in this reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
"Would intermittent flu like aches be neurological"
B12 deficiency gave me aches and pain in most of my joints, muscles and bones.
I'm not medically trained but if the aches started after your viral infection then it seems likely that the virus could be the cause. B12 deficiency can affect the immune system. I think the body fighting off a viral infection might use up B12 faster.
I have read reports that people with Long Covid may have lower levels of B12.
Have you got blood test results for folate, ferritin (or other iron tests), Full Blood Count (FBC) and Vitamin D?
Forum members often report deficiencies in folate, iron, Vitamin D as well as B12.
Some people with B12 deficiency get diagnosed with fibromyalgia.
I have permanently burning feet . Just the sensation , they do not feel hot to the touch . The feeling is now permanent , as I wasn’t treated soon or often enough. Have been self-injecting for 6 years , to no avail. But they recovered from total numbness to burning , so I’m glad about that .
It looks like you are lucky and can take oral B12. But you obviously have a problem with absorption which is why your B12 levels were so low. You can probably only absorb passively which is very inefficient. You need to take a much larger amount of B12. I take 15,000 mcg daily - liquid B12 diluted in water and drunk throughout the day.
I am also a celiac with digestive issues and constipation problems. I'm lucky if I go twice a week. But before I gave up gluten and dairy sometimes I would only go once every 3 weeks. I did try laxitives but, as you have found out, they gave me very bad diarrhea so I stopped using them. Being a celiac I had an imbalanced gut. I looked fat but it was all a bloated stomach. I had very thin arms and legs. I was eating a lot but my imbalanced gut was impairing my body's ability to absorb nutrients. I found out I had PA as well as being a celaic at the same time. So I gave up gluten and dairy and also started taking B12. And things got much better. I now go twice a week. And I lost 30lbs in the first month.
It sounds like you may have an imbalanced gut as well. Which is probably one of the reasons you're always tired - not getting enough energy from your food. I know it doesn't help but lots of people on this forum have similar problems. Many people aren't celiacs but find giving up gluten helps them as well. Other people find that digestive enzymes help. I'm afraid there is no quick fix. I don't think you'll get much help from your GP. They have a very basic knowledge of nutrition.
There is poor correlation between blood levels and B12 deficiency symptoms, especially with people who are supplementing B12 either orally or with injections. This issue is discussed in the Mayo Clinic article mentioned by Sleepybunny ("The Many Faces of Cobalamin (B12) Deficiency").
I would say the symptoms are consistent with b12 deficiency - the neurological symptoms can be tingling, pins and needles, numbmess or burning sensation, or a combination.
I also have exocrine pancreatic insufficiency which causes malabsorption so there is a cross over of symptoms.
I think it is important to know, and to also tell your gp, that the uk b12 blood tests do not distinguish between active and inactive b12 in the blood. This means that it is limited in its use. B12 deficiency is not a blood disorder and should not be treated as one. Treatment should be symptom based.
The pernicious anemia test is also notorious for false negatives so it is worth repeating if need be.
With this in mind, you should be able to request starting the NHS guidelines' loading doses, which are every two days until symptoms stop improving, (this took six months for me) and then every two months.
The oral tablets work for some but for many it is simply near impossible to extract b12 from oral tablets - only injections.
Some practitioners think that b12 can be toxic - it isnt. If this is brought up, you may want to ask them to show any evidence for that.
I would strongly advise you to write to your practice outlining clearly what treatment you think you should receive, and draw their attention to nhs/nice guidelines.
It is useful, at least, to have on your record that treatment was requested and denied, but more than likely they will engage with you.
I had to do similar with my GP - it was all very amicable and they reviewed their b12 treatment policy to make it adhere more to the guidelines.
My health changed the most when I took matters into my own hands and bought b12 and self inject. Although my practice agreed to the extended loading doses, I was not able to attend the surgery every two days for months due to work. I bought my own from germany and inject at home. My gp is aware of this and I am in communication with him about that.
Thank you Luac. I'll bear in mind your advice to write to GP with guidelines if they aren't taking it seriously.Right now haven't yet talked to Go to review results.
It has been proven that b12 levels are not and should not be the deciding factor of PA. Symptoms are what docs should pay attention to. Hope you get b12 jabs soon and can repair or at least ease your symptoms
I can’t speak for anyone else, but I never had constipation with my B12 deficiency. The one time I did it was due to h-pylori. A very fixable issue. Also gallbladder as well. I had chronic constant pain in the upper right quadrant. Got a hida scan which confirmed my gallbladder stopped working. No stones. Not saying those are the causes in your case for constipation, just suggestions for things to look into and rule out.
Things to rule out for fatigue:
B12, folate, thyroid, Iron, transferrin, ferritin, CBC, vit D, albumin,
As for B12 deficiency, keep on that path. 300 is low in my book, so while ruling other things out, keep trying to get a doc who will provide frequent b12 injections, learn how to self inject once you do.
My symptoms were:
Dementia/brain fog/ inability to comprehend simple conversation
Fatigue - a simple shower wore me out. Took 2 hours to get out of bed. Whearas I am normally a very driven energetic person.
Tight muscles esp in upper arms and pectoral.
sciatica
Back pain
Muscle weakness
tingling numbness in hands
Depression
It took 6 months of daily injections.
During which my whole body hurt to the bone for 1.5 months while the nerves restored. That didn’t start until about a month or more of injections. Now I’m so much better.
I found a doc who would listen. I stated that my career was at stake. I am the only one who pays my bills. I don’t want to end up on disability.
And showed medical journals which declared:
1 - permanent damage if left in treated, act now and have a chance. Action is cheap and simple: B12.
My symptoms I think are worst in this forum. Extreme muscle weakness in whole if my body. Double vision, blurry eyesight, tormented stomach muscle which ended in umbilical hernia. I think my B12 deficiency was long enough that It doesn't get better after ten months injection and taking pills. I don't know what to do. I'm just crying because bI was an healthy man with athletic background. Still I don't know it's MS or just B12 deficiency. All of the sudden my symptoms started after assuming megaloblastic aneamia 2020 September. Then seven months I was on pills then thigh muscles started to get weak and I was feeling pressure alot while walking. Then I started cyanocobalamin injection and light exercise but my symptoms got worsened and then my upper body also got so weak. I have lived fir eight years in severe stressful life and before that for six years in bad condition of life. Sine symptoms started eight years ago like feeling not be able to walk up stairs. Stomach muscles started to feel losing strength and five years ago my eyes started to double vision. But in 2020 I had megaloblastic aneamia but no one ordered proper tests, I think I had full blood count but MVC was in normal range because my feritin was in low range and also I was injected cyanocobalamin before test. Now I have too many very bad symptoms band I don't know are these symptoms going to get improved or no or it's MS. I'm;48 year old man and maybe not be MS but I have some symptoms look like MS but I don't know until I join my family and they help me by taking me to our family doctor and get referral for specialists. Fir about two months now I inject hydroxocobalamin and for about a month I inject every other day and sometimes everyday. I take 15000 mcg methylcobalamine slow release everyday along with activated b complex with low B6 and on and off iron. But still no tangible improvement. I just cry everyday. I have no idea what happened ten months ago that my just very tired symptoms turned into extreme muscle weakness and pain and numbness in hands which doesn't let me sleep. But in the last few days it's was a little bit improved. I don't know bis it possible to get rid of this horrible disease or its MS. Or how long it takes to see a tangible improvement. My muscle weakness completely get improved andy eyes double vision go away. I have tinnitus, phantom smell. Feeling pressure on my eyes. And still irritable mentally My gum also got weak and now I have infection resistant to antibiotics in my gum. I hope my nerves damages not permanent yet
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