Hi guys some advice I’ve been having very strange symptoms since March , tachycardia heart rate of 180 , pins needles in hands feet’s , dizzy spells , tremors shaking , and fatigue breathless they done bloods said it was anxiety they’ve put me on numerous antidepressants and my symptoms are still there , I’ve had ibs since 18 30 now suffer badly with loose stools anyway I thought I would do a private test only thing came back is low b12 at 229 and my vitamin d came back normal at 54 and iron normal , could b12 be causing my symptoms do u think ??
Edited by admin to remove photo as shows name of a physician
Result was 229pg/mol - insufficient range 145-300
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Horsewhisp
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Your B12 is low , so I’m surprised that your GP hasn't suggested B12 tablet supplementation . ( That said , I had a B12 level of 150 , many B12 deficiency symptoms , including numb feet , and was sent on my way ) I assume you have a normal diet , are not vegan or very strict vegetarian , do not take Proton Pump Inhibitors , Metformin, or any other drug that can inhibit B12 absorption . Fish tapeworm infestation due to raw fish consumption . Abuse nitrous oxide . Don't know if I've missed any of the reasons for low B12 . You can always look them up . Your symptoms do sound like B12 deficiency, but those symptoms often overlap with other conditions . Pernicious Anaemia patients can get symptoms similar to IBS . I certainly did . There is a test called the Intrinsic Factor Antibody test to try to detect antibodies which prove P.A. but about 50 % of the time they cannot be detected in P.A. patients . These antibodies , detected or not , destroy the parietal cells in the stomach which produce the Intrinsic Factor and stomach acid necessary for absorption of vitamin B12 .This upsets the stomach flora , producing those IBS -like symptoms. ( can be helped with a probiotic , mine was )
Obviously if you have P.A. tablets will not help, only injections. . I see you joined P.A.S. last year , so you must have had thoughts about this condition . Is it in your family ? . Because it can be genetic .
Dont know if Ive helped you with my ramblings . But there are better people than me on this forum , who Im sure will be in touch . Its a difficult condition to diagnose , because little research has been done on it , and the only test that can prove it , cannot be relied upon . There used to be a better test called the Schilling test , but its expensive and difficult , and is not used any more in the UK . I am a diagnosed P.A. patient ( positive IFAB test ) but had huge difficulties in getting frequent enough injections to keep symptoms at bay , ( only 3 monthly allowed ) and have had to resort to self-injecting weekly . I told my doctor , which resulted in my NHS injections being withdrawn .But I had no choice . I have been left with an irreversible symptom , because treatment was so delayed .
Thank you for replying I did ring my doctor and have blood test this morning but I’ve had so many and nothing comes back , my mum has over active thyroid and Graves’ disease but mine have all came back normal , I do have a normal diet plenty of veg every day but I am underweight six stone , my doctors are baffled just as much as me I’m also waiting on cardiologist for 24 hour heart rate monitor
Normal really is more an opinion rather than a result ! Do you know what was tested and do you have the results with ranges ? Normal usually means 'in range' - but it is where you are in the range that is the key to your wellbeing.
These are my results b12 229pmol/l insufficient folate 16.4 nmol/l normal total binding capacity 63 umol /l normal unsaturated iron binding 33.5 umol /l normal ferritin 37ug/l iron 29.7 umol/l transferrin satirisation 47 optimal vitamin d 54 sufficient but don’t have normal ranges on there so I don’t really no how to read it all 🙄
No I don’t have have them coz my doctors don’t really give me my results they just say it’s all normal , can I ask for them ? Okay how would I raise them vitamins ?
Yes you’re entitled to ask for your blood test results. In normal times I always ask reception for a print out of any blood test results. Maybe they’ll post or email them to you at the moment.
I have Graves’ disease (overactive thyroid) as well as PA and your symptoms are identical to mine when I was first diagnosed with Graves.
If your GP insists your thyroid results are normal I’d post those results on the thyroid forum and ask for advice. It’s important that Graves is diagnosed and treated as early as possible.
It’s not uncommon to have more than one autoimmune illness, they often come in a group. I have Graves, PA and vitiligo.
Okay thank you my mum has grave disease and over active thyroid she had her thyroid removed so that what my mums is sure I have my doctor keep saying they’re normal and it’s all in my head but I no it’s not ! I’ve tried all there antidepressant I’ve paid private to go see hypnotist and everything and my symptoms are still there , I keep having like a rushing in my ears , I feel like I can feel my pulse everywhere I can sleep at night coz I keep hearing it beating in my ear , I shake constantly and have these like adrenaline rushes , I hate the heat arm where as before I was always cold now I can’t even have the heating on lol I don’t understand what happening to me but I no something is I just don’t no how long I can keep on fighting to get doctors to help me I’m at my wits ends I wanna go back to work and back to my normal self so badly x
Wow yes I remember being totally intolerant of heat. I couldn’t stand a warm room!
Get those results and post on the thyroid forum with details of your symptoms and ask for advice. It’s quite likely that your GP won’t have carried out all necessary tests but I’m sure you’ll receive advice of what’s needed.
Yes I can’t stand it where as bout 7 months I used to be the cold mortal of the family I alway wrapped in layers heating on fire on now I hate it I just always feel hot and flushed or it comes in waves , ok I had more bloods done this morning so I will ask them for my results and what they actually are and post on thyroid , thank you
You are legally entitled to have copies of all your results. Surgeries should have on-line access - so worth asking. ID required and a form to complete.
Supplementing should improve your nutrient levels.
I had those done too but they all came back normal apart from b12 , folate 16.4nmol/l total binding capacity 63umol/l ferritin 37ugl/l iron 29.7umol/l vitamin d 54 I’m ok/ l I’m waiting on cardiologist for a 24 hour monitor bout the palpitations but I’ve been having lots of pee and needles and waking up with my left arm feeling weird like it’s slow and bad tremors , I am underweight only six stone and I’m 30 the doctors are aware of this , thank you for replying to me I hope your daughter getting the help she needs now
Palpitations and tachycardia are very frightening. The thing is b12 deficiency and folate being low can both cause these alongside a whole myriad of other things like thyroid. The thing is when you have palpitations and a tachycardia it brings about anxiety and then the anxiety brings about more attacks. Drs like to say anxiety causes it but actually it’s the other way around. The more attacks you have the more anxious you get the more attacks you’ll have. Make sure you are on top of all your heart healthy vitamins and minerals, hearts need potassium but only food sources, magnesium (never citrate) vitamin D and omega 3’s. A 24 hour tape is a good idea but you can bet your bottom dollar you have no attacks that day!!! My family have a history of SVT’s that took years to catch on tape! Good luck and hopefully you will get your b12 and folate levels up because on their own they will make you feel dreadful.
Citrate is the magnesium used in some laxatives. It’s used to draw fluid from the body and with it it depletes some vitamins and minerals and disrupts copper levels. If we have trouble absorbing vitamins etc in the first place it’s better avoided. Magnesium glycinate and threonate are really good options plus threonate crosses the blood brain barrier,
Thank you for replying I just want this over with and be back and work and normal again I don’t understand why I’m feeling so poorly and my blood test keep coming normal doctors says I paid for private one which said low b12 but I think my doctors are not going to take much notice , I scared it’s ms although I had brain scan that was okay they said but I just keep feeling more and more poorly and it’s just so tiring
Is it possible to have Svt every morning I’m not to worried bout catching it as atm it happens every morning for the last 7 months I went to the hospital once because usually my propanol lowers it but it’s stayed at 130 for good five hours but they done ecg said it was fine so I’m unsure what causing it as well as all my other symptoms it’s draining it really is
I would say no it would be unusual to have an SVT every morning. But like someone already mentioned it could be POTS after laying flat all night. Also vasal vagal response which can be made worse by stress and anxiety. The other thing is what about asking the dr to try bisoprolol instead of propanaol which a lot of people don’t get on with.
It's upper endoscopy that they use to look for coeliac-type small intestine damage, rather than colonoscopy so I'm guessing probably not. Blood tests are good for flagging up coeliac these days
I just think my doctors are going to say there blood test are all normal and I’m scared it could be ms although they did send for Brian scan and that was fine , but I just feel so poorly and so fed up this has been happening since March I’ve tried so many antidepressant none of them working I’m on propanol at the moment and mirtazapine as they said it can help weight gain
The simple standing test with Bp and Heart rate measured whilst doing it worth asking for.
Also ask about hypomobility . Elhers Danlos has very many variants and symptoms.
I always thought hypomobility was just about the joints.
Its also about blood vessels. A cardiologist or neurologist would run tests.
My daughter had so many heart traces done and all were normal. It's only when she had more tests including a 'tilt table ' showed uk what was happening.
All thoughts but it took so many years I want to mention anything tk ask the specialists .
Thank you I will mention to doctor I’m terrified that’s it ms because I just feel so I’ll but all my test are coming bk normal apart from b12 I had brain scan they said that was normal but I’m scared it ms and been missed
The propanol slows my heart down but I still having the fast heart rate before i take the propanol I just don’t understand what’s happened I was kinda normal 6 months ago had ibs so always been underweight and going to toilet a lot but in April I woke up with severe low back pain ignored for a month then it got worse so rang my doctors obviously coz of covid they couldn’t see me have me amitripline the back slowly went but then came all these other symptoms slowly I started getting blurry vision then a month later tremors and shaking then dizzy spells and then like a constant lump in my throat , then my feet started going funny colours then couple months after that really fast heart beat , finally doctors seen me said I had tachycardia done bloods all normal gave me propanol and said they noticed my tremors so referred me for brain scan all normal but symptoms have still progressing and news one coming up last couple of days I’ve had pins needles in my feet’s and they numb a lot and now my left arm has started doing so now I’m so worried it’s something like als or something but a friend mentioned to me that maybe where I was going to toilet a lot I wasn’t taking in vitamins so that’s when I done the thriva blood test and it came back low b12 every time I ring doctors they said well your bloods are normal it’s all anxiety but I honestly have never felt so ill in all my life , I’m thirty and atm I’m sleeping on my mums sofa instead of in my own home because I’m scared coz I just feel so tired but not sleep tired like I just have no energy , I’ve left my jobs I feel like I’m losing everything I’m so dizzy all the time I just want my life back , sorry for the long rant I’m just tired of it all
I just don’t no how I’ve got to this point 8 months ago I had my own cleaning business so active and now I get out of breathe so easily It just kinda feels like my body is shutting down
Thankyou I will do I just had a message of my doctors to book an early morning blood test but I had a 9 o’clock blood test yesterday morning so don’t no what’s that about ,
Hi. Those were my exact symptons when I was diagnosed with Graves disease (hyperthyroidism). Worth checking. When i fixed the thyroid everything else became easier. ((Hugs))
There are many possible causes of B12 deficiency including diet, PA (Pernicious Anaemia), coeliac disease, Crohn's disease, internal parasites eg fish tapeworm, some medicines/drugs, excess alcohol intake, exposure to nitrous oxide, damage to terminal ileum (part of gut where B12 is absorbed)plus others.
Each CCG/Health Board/NHS Hospital Trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
I suggest you track down the local guidelines for your area of UK and compare them with BNF, BSH and NICE CKS links.
"My doctors tested me today for it "
I suggest you check
1) If GPs gave you both a TTG IgA test and also a Total IgA test.
TTG IgA checks for antibodies to gluten.
Total IgA checks which patients have IgA deficiency as these people need a different test for coeliac disease.
2) As you had a coeliac test today did your GPs tell you to make sure you were eating plenty of gluten in more than one meal per day for several weeks before you had test today?
People with coeliac disease may get a negative result in the TTG IgA test if they have IgA deficiency or they were not eating enough gluten before the blood was taken for the test.
NICE guidelines Coeliac Disease gives guidance on diagnosing coeliac disease.
"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 this book is out of date. See BNF Hydroxycobalamin link for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Table 1 in above article is about frequent misconceptions about B12 deficiency
"they just say it’s all normal , can I ask for them"
Best advice I ever got was to always get copies of or access to all my blood test results. I was told everything was fine/normal/no action and when I got copies I found abnormal results and borderline results.
I've written some very detailed replies with lots of B12 info eg symptoms lists, causes of b12 deficiency, useful books, more B12 articles etc that you may find of interest.
There may be some links that have details that could be upsetting.
No they didn’t mention anything to me about gluten , I did do a b12 test before and it’s was 38 pmol/L which they said was normal but I continue to get more puzzling symptoms numbness , tremors , dizzy back to doctors who tested brain scan for ms came back fine still I got worse then I thought I gunna do a vitamin check and it came back b12 insufficient low levels at 229 pmol/l so I don’t really understand how is one test months ago saying 38 do they all have different to test or sumin ?
"No they didn’t mention anything to me about gluten"
It's possible to get a negative result in TTG IgA test even if you have coeliac disease, if you weren't eating enough gluten before blood taken. If a coeliac patient was not eating much gluten there's a chance that not enough antibodies to gluten were in the blood to register a positive result.
Horsewhisp - have taken down image as it included the name of a medical professional - have appended result to your postYour results are in the grey range - which is indicated by 'insufficient' the results. B12 could be implicated
Some problems with using serum B12 measures mean that its difficult to interpret as a single point test - absorption problem is better identified by looking over time and seeing either a downward trend or a significant (>20% drop over) between two test, so if test has been done before you could look at the difference - but some care is needed to ensure that units of measure are the same.
I did have a b12 test before with a different company which was 38 pmol/l but I don’t understand the results they said it was normal then I done another one three months later which came back insufficient at 229 sorry I didn’t realise
The previous test was a different test - active B12. This looks at just that proportion of B12 that is bound to the protein that allows it to pass into individual cells. In general this is about 20% of total serum B12 - so that would suggest total serum B12 of around 200, which is doesn't suggest a B12 absorption problem, but that is a very rough comparison.
Hi Horsewhisp, I’ve read with interest responses to your current health issues. I feel for you! I’ve had similar symptoms. You have many good suggestions here. My same B12 number was close to yours at 223. Ive been diagnosed with anxiety and taking SSRIs as well. (Low B12 can cause anxiety) That has helped my extreme condition, less brain fog and anxiety, but still have fatigue, higher heart rate at times, out of breath more easily, some nausea, and pins/needles. Odd sensation in lips and tip of tongue. My MRIs turned out normal but I was thinking a central nervous system disorder too. My hope is one neurologist who last month (after looking at my blood work and nerve conduction test) diagnosed peripheral neuropathy with B12 deficiency with probably PA. Believes I should get shots. The book “Could it Be B12?” by Sally Pacholok and her doctor husband really was worth reading! There’s a second edition. Wishing you well.
Thank you ! I no I’ve been given amitripline , sertraline , citalopram and now mirtzapine and my symptoms haven’t changed I’ve just got worse I don’t no what wrong with me I feel so poorly all the time if isn’t b12 then what the hell is it I don’t no what else to do really I’m just fed up feeling like this , thank you I hope u get the help for you too xx
The above link has letter templates that people can base their own letters to GP on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, may be worth including a request that GP practice sends written confirmation to letter writer that they have received letter so patient has proof GP got the letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain
relevant test results
date of diagnosis
brief family and personal medical history eg worth mentioning a family history of PA /B12 deficiency
extracts from UK B12 documents,
requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
If you are unhappy with your treatment it may be worth sending a copy of letter to practice manager but be aware that this may irritate the practice.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in medical records.
If you get proof of B12 deficiency diagnosis whether from PA or other cause eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Does your GP have a list of all your symptoms especially every neurological symptom you have? You could use the list in the first link below and add any extra symptoms to bottom of list.
Peripheral neuropathy has many causes and can be associated with B12 deficiency and folate deficiency so worth mentioning any symptoms suggestive of PN to GP in any letter or conversation.
Do you have any symptoms affecting your spine/spinal area eg pins and needles, backache, other strange sensations and any balance issues?
Neuro symptoms can include ....
Tremors, tingling, numbness, pins and needles, burning sensations, insect crawling sensation (known as formication), electric shock sensations, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, migraine, brainfog, proprioception problems (problems with awareness of body in space) etc.
If yes to neuro symptoms, may be worth drawing GPs attention to the increased risk of permanent neurological damage if B12 deficiency is untreated or under treated, including damage to spinal cord. It may be enough to get the GP to consider at least a trial of B12 injections.
I am not saying you have this (I am not medically trained) but your GP should be aware of the possibility and sadly some GPs do not appear to be aware of this.
Yes they are aware of some neurological symptoms especially tremors and numbness and tingling which they first thought ms so they sent me for a Brain contrast ct scan which came back normal also thyroid scan coz i keep feeling like a lump in my throat so thoughts it’s gotta be thyroid because my mum has thyroid all clear they’ve done lost of bloods they said which was all normal but my symptoms have just got worse it only started with a bad back then more and more things have started to come up over the last 7 months so a friend suggested a vitamin test because I’m underweight she said maybe it could be vitamin issues so I had to pay private because doctors just fobbing me of saying it’s anxiety and then my test came back abnormal for b12 , but my doctors said 229 not majorly low I don’t no what else to do To get someone to listen to me !
I’ve been referred to cardiologist for heart palpitations he asked me was I anemic because he said your very thin which I said no my doctors have done bloods and they said all is fine which is when he also recommended b12 test which my doctors said it only old people which suffers b12 so they wouldn’t test so I just thought well they not what they talking about it but it was only when my feet started going numb then my arm that I thought something defo not right here ! Again I thought ms but my scan came back fine , i joined here months back coz I had suspicious but my doctors kept saying it all anxiety so I went down that route paid privately to go see hypnotist etc but nothing has helped ! My symptoms just kept coming over the months and more and more new ones , I don’t no wats wrong with me that the hardest bit ! I just wanna no wats happening to me 🙄
Okay I did speak to doctor yesterday and I explained everything to her , she also asked me to email some pics because I said my hair falling out but in clumps , and for some strange reason my tongue has gone yellow don’t no wats so I did send them to her and she agrees that sumin wasn’t right and it just not just anxiety so hopefully sumin will come of it like I don’t no if all this could possible be just b12 surly not ! Considering mine only a little bit low but I don’t really no what else it could be thyroid , diabetes , Addison lupus ms they’ve checked for all them and fine so I don’t no
Have you asked the GPs to test you for PA (Pernicious Anaemia)?
The test that is most often used to test for PA in UK is the Intrinsic Factor Antibody test.
I used to put requests for blood tests into a letter to GP along with evidence that supported my request.
It is possible to get the IFA test done privately if your NHS GP won't order it.
Search online for "intrinsic factor antibody private test uk".
NHS GPs often won't accept the results of private blood tests but a significant result in a private blood test may be enough to nudge them into testing you.
Blog post about how PAS have supported PAS members seeking PA diagnosis
There is a note in the article above that symptoms of B12 deficiency can occur without anaemia and without low levels of B12. I'm sure most GPs will respect what is in a NICE clinical knowledge summary.
The above list might be worth showing your GP or sending it to them.
"I don’t no if all this could possible be just b12 surly not !"
I was symptomatic for many years with typical symptoms of b12 deficiency (over 40 different symptoms) and NHS refused to treat me as my B12 results were well within range. This was despite me being treated in past for low B12.
I had many neurological problems including pins and needles in my spine and dementia type symptoms and consider myself lucky to have avoided permanent damage to spinal cord.
Through sheer dogged determination, I managed to get the doctors to exclude other possibilities for my symptoms such as lupus and related conditions, MS, Lyme disease etc.
I asked every doctor and specialist I saw if it could be B12 deficiency, passed on lots of info, extracts from UK guidelines, wrote letters asking for treatment but my GPs at the time still didn't treat me.
Once I finally got treatment, the majority of my symptoms either improved or disappeared.
I have some symptoms that appear to be permanent which I think is due to the length of the time I was left untreated.
There are other reasons besides B12 deficiency for a tongue to change colour.
Other health professionals who may be helpful
Sometimes the route to diagnosis of B12 deficiency can involve other health professionals besides GPs.
During the pandemic a lot of appointments are not taking place but I wondered if your dentist had commented on your mouth. Perhaps when you next have contact you could ask if dentist can see any signs suggestive of B12 deficiency in your mouth.
Some dentists might be able to offer telephone or online consultations.
Possible signs of B12 deficiency in mouth include
glossitis (an inflamed tongue that may be sore and red)
splits in tongue
sore spots at corners of mouth (angular cheilitis)
ulcers in mouth and on tongue
painful mouth and tongue
tingling in mouth and tongue
itching
changes in sense of taste
Scientific article about Glossitis and b12 deficiency
If dentist can see signs suggestive of B12 deficiency, maybe you could ask them to write to your GP about this.
Other health professional who might spot signs of B12 deficiency include
Optometrist may spot signs of damage to optic nerve during eye examination.
Audiologist may diagnose tinnitus ( a common symptom associated with B12 deficiency). B12 deficiency can lead to hearing loss.
Podiatrist/chiropodist may spot signs of neuropathy in feet.
Might be worth mentioning your concerns about B12 deficiency to any health professional you see and ask them to look for signs of it.
This link I mentioned in a previous reply lists palpitations as a symptom of B12 deficiency. It could be a good list for UK patients to show their GPs as most will respect what is in a NICE Clinical Knowledge Summary.
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