Hi everyone, first time posting on here. I have an appmnt with GP tomorrow and i know i wont be able to fully explain to him how i'm feeling. I had bloods done a month ago and b12 was 141 which GP says is borderline. I've been given 50mcgs cyanocobalamin to take morning and night and a month on, there's no difference in symptoms which are exhaustion, difficulty concentrating, aching joints and dizzyness. Ive to take the cyanocobalamin for 4 months before they retest me but i feel so lethargic and this is bringing me down so i called doc last week to try and convey how i was still feeling (as i dont really want to feel this way for a further 3 months) and doc said to me "i'm not sure what it is you want me to do when we can't find anything wrong with you". He then suggested i go to see him tmw for a "chat". I know he's going to offer me anti depressants as chances are as soon as i go in to the consulting room i'll burst into tears. Has anyone else had to battle with their gp and any tips?
Gp appmnt 😫: Hi everyone, first time... - Pernicious Anaemi...
Gp appmnt 😫
First question - are you a vegan or does your diet contain very little meat/fish/egg/dairy. If this isn't the case then the low B12 isn't dietary but an absorption problem. PA is the most likely absorption problem but not the only possibility. 50mcg tablets are only an appropriate treatment for B12 deficiency caused by dietary deficiency.
Second question - do you have any neurological symptoms - eg problems with balance or tingling/numbness in hands and/or feet. If so the standards recommend starting on injections immediately to prevent the risk of permanent neurological symptoms.
You could suggest that your GP takes a look at the area of the PAS website aimed at helping medical practitioners improve the diagnosis and treatment of PA (and other B12 absorption problems)
pernicious-anaemia-society....
You should also ask them to take note of the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies, which they should be able to access through the BNF but can also be found here
onlinelibrary.wiley.com/doi...
a) key points to note: serum B12 isn't a clear cut test - it is only accurate to 20% and it is possible for people to be B12 deficient well into the normal range
Also, there isn't a 100% fool proof test for PA and the standards refer to IFAB-negative PA as a result.
b) recommendation is to treat cases with neurological symptoms promptly
Hi, thank you for your reply, in answer to your questions - 1st question - i am not vegan and think I have a healthy (ish) diet. I'm not a lover of fish but do eat meat and dairy products. I had my gall bladder removed 7 years ago and take ranitidine daily for acid reflux (i'm aware this can affect the absorption of b12). 2nd question, i have had bad dizzy spells for a while now and had to stop walking on way to work last week to steady myself against a wall. I havent had tingling sensations in hands or feet but i am waiting on an appmnt to see the orthopaedics dept re neck problems and ive had pain down right arm for last couple of weeks.
Thanks
having had your gall bladder removed is a risk factor for damage to the part of the ileum where B12 is absorbed, making it more likely than not that you have B12 absorption problems and hence that you are B12 deficient.
Neurological damage caused by B12 deficiency tends to be symmetric so problems on just one side don't point to B12 deficiency - however, the dizzy spells may be indicative of neurological problems - so would be good to draw attention to those.
I'm not in a position to convince your GP and I'm not medically qualified but there are a number of things you should make sure you draw to your GPs attention namely
a) risk of B12 deficiency developing as a complication of gall bladder removal ... and as an absorption problem the time delay would also be consistent with the time taken for absorption problem to result in B12 deficiency
b) the existence of problems with balance that may indicate developing neurological issues that could be associated with B12 deficiency.
c) that you eat meat/fish making dietary B12 deficiency unlikely.
d) that 20% of patients with B12 deficiency present with neurological symptoms before any signs of macrocytic anaemia start
e) the need for prompt treatment of B12 deficiency associated with neurological symptoms ... and that there is a more aggressive regime in this case, ie loading shots - 3xweekly until symptoms stop improving (with review after 3 weeks)
suggest you make a full list of your symptoms as well and document when they started.
You can find a list of potential symptoms of B12 deficiency here
pernicious-anaemia-society....
it would be good to reflect back over the period since the gall bladder surgery.
Your levels are very low and you probably need more b12. Of course there is something wrong... you are b12 deficient. The symptoms are frustrating and take months to repair. I am going through similar issues and am frustrated. I too just want too feel better.
You’ve had an excellent answer from Gambit 62 .i feel I can’t add anything , but I want you to know that you have support here .
Yes I had huge problems with my GP in getting the treatment I needed , even though I had a diagnosis of PA ( which is not easy to get from the unreliable IFAB Test ( Intrinsic Factor AntiBody test) There is a lot of ignorance in the medical profession about PA/B12 deficiency.
But I would hope that there would be more understanding by now -4 years on . It sounds as though your deficiency could be a result of your op. and your taking a PPI( proton pump inhibitor which annihilates stomach acid ,which is so necessary for absorption of vitamins and minerals ) , as Gambit 62 has worked out ( he/she is a great medical detective! )
B12 injections are called for . I hope that you get them . The trouble is that you feel so unwell , and that makes it difficult to do battle with your GP . But do persevere . Come back to us if you get no joy . You can get help here . Very best wishes .
Hi,
"Has anyone else had to battle with their gp"
I think most of us....judging by what I read on this forum.
If you're pushed for time, read this link below then come back later to read rest of post.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
"b12 was 141 which GP says is borderline"
I don't think a B12 result of 141 is borderline.
Do you have the reference range and units used for your area? I've assumed you're in UK.
Reference ranges vary depending on which part of UK you are in.
A typical one might be 180 - 900 ng/L which would mean 141 ng/L would be well below normal range.
Sometimes the units used are pmol (often private blood tests).
In UK, there are areas that are using out of date local guidelines on treatment of B12 deficiency and also reference ranges that have avery low lower limit making it very difficult to get a diagnosis of B12 deficiency.
if you're in UK, suggest you get hold of a copy of local guidelines and compare it with national UK guidelines.
Find local guidelines by
1) internet search
2) Freedom of Information request to local NHS website
3) Ask practice manager at GP surgery for a copy...warning this may irritate them
4) if still can't find them, local MP may be able to help
Are you by any chance in Gloucestershire? A county whose guidelines have not been changed to match national guidelines.
"i know i wont be able to fully explain to him how i'm feeling"
How about putting concerns in a letter to GP? It could contain symptoms, test results, relevant family/personal medical history and extracts from B12 documents.
I used to do this as I couldn't explain things clearly due to brainfog.
Some GPs may be irritated by a patient who writes letters but I gave up worrying about irritating Gps when I realised I was headed for dementia and spinal damage if I didn't get treatment.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
More B12 info...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Have you been asked questions about diet?
Have you had tests for Pernicious Anaemia?
Have you had tests for Coeliac disease?
UK guidelines recommend anyone with unexplained B12, folate or iron deficiency shoudl be tested for Coeliac.
If yes to Coeliac tests and they came back negative...
Did GP do both recommended tests?
1) tTG IgA
2) Total IgA
tTG igA checks for antibodies to gluten.
Total IgA checks who has IgA deficiency as these people need alternative tests for Coeliac because their bodies will not mkae the antibodies that tTG IgA looks for.
Did GP ask you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
One reason for a negative result in tTG IgA test is that patient was not eating enough gluten before test and therefore not enough antibodies were in blood to produce a positive result.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to Nitrous Oxide?
Nitrous oxide is sometimes used as part of pain relief/anaesthesia in operations/childbirth etc.
Nitrous oxide inactivates B12 in the body.
gov.uk/drug-safety-update/n...
Were you given nitrous oxide when you had your gall bladder operation?
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc.
Giardia lamblia is another parasite associated with B12 deficiency and there are other parasites besides two I mentioned that can be associated with low B12.
If you're in UK, I suggest reading all these documents below.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
BNF Children
bnfc.nice.org.uk/drug/hydro...
NICE CKS
cks.nice.org.uk/anaemia-b12...
"I've been given 50mcgs cyanocobalamin to take morning and night and a month on, "
This is the UK standard treatment for dietary deficiency. Your GP appears to have decided that your low b12 is due to diet but as you say you eat meat and fish which makes this less likely.
If your diet is good with plenty of B12 then more likely that there is an absorption problem in gut.
You mention taking ranitidine and gall bladder operation , both potential risk factors for B12 deficiency.
The problem with your GP giving you low dose B12 tablets is that it may just nudge your B12 level closer to normal range, making it harder to persuade GP to treat you.
UK recommended treatment for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
UK recommended treatment for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better followed by a jab every 2 months
Do you have any neuro symptoms eg tingling, pins and needles, restless legs syndrome, tinnitus, muscle twitches, migraine, memory problems, balance problems, word finding problems, strange behaviour eg keys in the fridge, clumsiness, dropping things etc ......?
If yes to neuro symptoms,
1) Has GP referred you to neurologist?
Important to exclude other possibilities.
2) Has GP sought advice from haematologist?
NICE CKS link advises this for patients with b12 deficiency with neuro symptoms.
3) Gastro enterologist if gut symptoms present? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori infection etc
Sadly some specialists like some GPs don't fully understand B12 deficiency so fingers crossed you get a good one.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
If there's any possibility of PA, worth joining PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS can pass on useful info to help GP and in some cases can intervene on behalf of PAS members.
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Under treatment of B12 deficiency can have serious consequences, I hope your GP is aware of this.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
nhs.uk/common-health-questi...
Some people on this forum have such a fight to get adequate treatment that they resort to treating themselves or some have additional injections from private GPs (expensive). To my mind this is a last resort though.
Best piece of advice I ever got was to always get copies of all my blood test results. learned to do this after being told everything was normal and finding abnormal/borderline results on copies.
I'm not medically trained. More B12 info in pinned posts on this forum.
Hi sleepybunny (great name) this is first chance ive had to read through your post properly. My GP did write me a px for b12 injections but i dont think he was happy about it so there really was no further discussion never mind a referral to a neurologist or anything like that despite me (again) saying how dizzy i am and constant lack of concentration is horrible. I am waiting to see orthopaedics for neck pain and associated tingling in back (i put that down to nerve pain?). I assume i will have my bloods monitored once my b12 once injections start? Still lots of questions but GP was very dismissive of me this morn and i ALMOST burst into tears but managed to hold it together.....but only just.
Thank u 😊
I'm pasting in another answer I've just written for a similar situation -
Go see your doctor ASAP. Demand treatment as recommended in the British National Formulary (your doc will have access to the online version) - medicinescomplete.com/#/con...
Point out that cyanocobalamin tablets are only licensed for treatment of "Vitamin B12 deficiency of dietary origin" medicinescomplete.com/#/con... and that there is no evidence of yours being dietary.
Hi, thank you, just back from docs apptmnt - very ignorant locum doc, started off by saying how lethargic i was and his reply was "if i had a pound for every person who came in here saying they were tired", but i persevered, he rolled his eyes a few times before i had finished but i then asked him where we go from here and he answered "well, it looks like you've made your mind up that you want injections and i dont want to argue with you!" So i have a px for hydroxobalamin solution 1mg/ml, 1ml ampoule to be given IM 5 x over 2 weeks then every 3 months. 1st jag 7th oct. He was totally skeptical that these injections will make any difference to how i am feeling (other than an initial boost) he said.
Thanks everyone 😊
Hi,
"px for hydroxobalamin solution 1mg/ml, 1ml ampoule to be given IM 5 x over 2 weeks then every 3 months"
The above is not standard treatment in UK.
I'm certain your locum GP (and probably your usual GP) is following a local set of guidelines rather than the national guidelines.
If you have any neuro symptoms, it should be the treatment pattern below so make sure your GP knows any neuro symptoms you have.
UK recommended treatment for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better followed by a jab every 2 months
GP can find info about treatment where there are neuro symptoms in BNF Chapter 9 Section 1.2
BNF(British national formulary) is book for GPs that gives guidance on recommended treatment for various conditions in UK. All UK Gps will have access.
I bet your GP , assuming you're in UK, will have a BNF book on their desk.
There is also online access to BNF info.
bnf.nice.org.uk/drug/hydrox...
Hi, the problem i have is the gp i saw today disputes i have b12 deficiency, he still insists its only borderline (141) but said today that he wasnt going to argue with me. Whats really interesting is that my hubby was also diagnosed as b12 deficient a couple of months ago (57) he was started on injections right away .......i think its bizarre that we both eat a reasonably healthy diet but we are both b12 deficient around the same time? My hubby hasnt had his gall bladder removed like me so its a mystery.
Hi again,
"gp i saw today disputes i have b12 deficiency"
If you see him again, perhaps you could show him the BMJ article below which emphasises that people can be B12 deficient even with an in range B12 result.
BNF
bnf.nice.org.uk/drug/hydrox...
I had years where I was untreated despite multiple typical symptoms including many neuro symptoms and consider myself lucky to have avoided spinal damage and dementia. The problem was that most of my B12 results were well within range although I had one that was below range.
I am pleased to read the locum is willing to treat you but as it's a locum GP it's possible that at some point your usual GP may discontinue the treatment.
If you have any neuro symptoms, try to persuade them to give you the treatment pattern for those with neuro symptoms. There's a real risk of permanent neuro damage if a patient is under treated.
"its bizarre that we both eat a reasonably healthy diet but we are both b12 deficient around the same time"
I think B12 deficiency is very common and often undiagnosed or misdiagnosed.
"He was totally skeptical that these injections will make any difference "
You could keep a symptoms diary tracking changes over time with treatment. A symptoms diary can provide useful evidence that B12 treatment is making a difference.
Some forum members report a worsening in some symptoms at start of treatment so be prepared for this possibility.
If you need to discuss treatment/diagnosis with GP it may be worth putting queries in a letter to GP.
Link below is about under treatment of those with B12 deficiency with neuro symptoms
b12deficiency.info/b12-writ...
Although it's possible that your gall bladder surgery has led to being b12 deficient, GP should exclude other possibilities eg PA, Coeliac, H pylori infection so may be worth asking for tests.
Next link is about having b12 deficiency even with an in range B12 result.
b12deficiency.info/b12-writ...
Link above mentions functional b12 deficiency where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Hi,
Is there any chance of taking someone supportive with you to any appointments that might be challenging? It's my feeling that GPs are kinder if a witness is present.
Even better if that person knows about B12 deficiency and has read about it and can intervene on your behalf.
Hi, i dont know anyone personally who is knowledgable about b12 deficiency, even the girls at work think as its a vitamin deficiency i should take a berocca and feel fine lol its so much more than that.
Well done Magtee - for not losing temper with eyeball-rolling locum, and for getting said locum to treat your condition !
Let us know how you fare - and best of luck !
Fantastic! Well done - especially in light of how you are feeling.
Bursting into tears at the slightest emotional trigger is very B12d!
If you get your jabs and you get a positive response then you know what you need to do to feel better again and if the Drs are too unhelpful you can do like thousands of us do and buy your ampoules from Germany (Brexit allowing) and self inject. It's much easier than the thought of it and miles better than feeling so terrible.
Because the processes of cell repair, nerve function and energy release require lots of things to work properly you may find it's helpful to take a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and maybe iron and vitamin D, ideally from your diet.
Now they've agreed to your jabs you could take very high doses of sublingual B12 until you get the first injection done because it might help to stop you getting any worse and the jabs won't be such a shock to your system either.
I would just like to add that low B12 and also LOW VITAMIN D both contribute or can cause depression.
I was put on B12 injections and after 3 months of weekly injections felt a huge difference in depression symptoms and later felt very depressed when my Vitamin D levels went low.
After taking a course of Invita D3 oral liquid (twice a week for 6 weeks) I felt a lot of difference but wasn’t enough to relieve my bone pain I bought some 1000iu (25ug) strength Vitamin D3 tablets from Holland & Barretts I took 4000-5000iu (4-5 tablets) for about 6 months and my bone pain went away and also my depression is pretty much gone.
I now take 4000iu daily for the past year and dropped my anti depressants dose my 75mg (was on 3 x 75mg for years).
I plan to further cut down on the anti depressants.
It is advised to take vitamin K2 with vitamin D3 so to stop build up of calcium if you take high dose D3.
Your B12 tablet dose is too low to do anything.....injections would work way quicker even if you have to buy them and I would personally recommend you not to take anti depressants but sort out your B12 and the D3 works great for depression together with B12.
Almost everyone here has had a battle with their doctor trying to get B12 injections but very few are fortunate to get the right treatment hence most self inject.
I suggest you go prepared 🥊🥊 to your doctor.
Good luck.
Thank you for your help, my GP did give me a px for b12 injections and my first jag is mon 7th, fingers crossed i start to feel better soon (altho i am aware my symptoms can get worse before they get any better).
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