?Low b12. Blood test says b12 is 135 though gp says is within normal range. Constantly tired,neuropathic pain, numb tingling on the end of nose, muscle spasms the list goes on. Any advise greatfully excepted.
?Low b12 135 : ?Low b12. Blood test... - Pernicious Anaemi...
?Low b12 135
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Bunnybin
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Your B12 is very low . NOT NORMAL ! You have many symptoms of B12 deficiency .You need immediate treatment with B12 injections . You must down load the protocol that doctors must follow -in cases like yours . available on the PAS site . Print it out and take it to your GP as soon as possible . Your folate reading is also important (vitamin B9) it acts together with B12,.
The sooner you get treatment the better . I've neglected you may get left with irreversible damage . Best wishes .
Gp stats that not deficient as bove 130 so feeling rather frustrated. Also forgot to mention suffer it migraines and have a strong family history of autoimmune problems😠
Hi Bunnybin. Do you have the reference range for your serum B12 result (the two figures printed after the result)?
Difficult to interpret results properly without those 😉
B12 >160ng/l: b12 deficiency excluded B12 130-160 ng/l: indeterminate value
B12 130 ng/l: consistent with b12 deficiency
Mine was 135
Sorry to hear your problems Bunnybin - even by their own standards, your level is clearly not 'normal' - it's in the indeterminate range, which means by definition a deficiency is not excluded, even in their own (probably flawed) reasoning.
Sleepybunny has linked some very useful files , but if you have to pick one, the NICE guidelines are probably the best ones to reference with your GP as they should be recognised.
If that does not illicit any help, you should ask what guidelines the GP is using. In my experience, some local trusts have a different version they use (in my case one that is out of date and in the process of being updated). The NICE guidelines and the BSH guidelines are both the most recent and clear on when to treat. If he/she has a short attention span, the flowchart from the BSH guidelines linked by sleepybunny is perhaps the single best page.
Both guidelines say you must treat the symptoms. They also mention the cases where someone may have a 'normal' B12 level, but have all the symptoms, and are particularly concerned where there is family history.
If your GP will literally not budge, then you could consider one or more of the following :
1. See if you can get a referral, probably to a haematologist, but potentially a neurologist, based on the symptoms.
2. Make your case in writing to the GP, so he has to place on writing in your medical record his basis for making his judgement.
3. Speak/write to the practice manager detailing your concerns - there are people here who can assist - request a second opinion
4. See if he is willing to have an Intrinsic Factor antibody test, which would possibly prove the case (although it is wrong about 40-50% of the time so may just encourage his misinformed stance)
There is some information on writing to your GP about B12 on this page: b12deficiency.info/b12-writ...
Unfortunately, it seems many of us have to make our case to get what we need/deserve. My view is that our health is too important not to, but that it needs to be done firmly, but respectfully and using only nationally recognised guidelines that are difficult to ignore or write off as 'internet experts' as some GPs are wont to do.
Sadly for most people, B12 injections are the only workable solution and they can only come through GP or consultant on the NHS. However, there are other ways to self supplement with tablets, sprays or patches, which seem to work for some (but not most).
Many people are driven to import the B12 themselves (it's not illegal to do so as it's openly available in Europe) and self inject but I would certainly try to rule out all your other options first.
Good luck and keep asking questions - there are many experts in this forum who will support and assist you.
Gavin
Forgot to ask - which NHS trust are are you in? (Nothing more specific than the trust area). Different trusts seem to have different guidelines, some of which are published. I'm currently looking into that to make clear the wide variance, as evidence in my case where my trust uses an apparently out of date guidelines
Thankyou really appreciate your input. As had low b12 about 5 yrs ago and had 3 lots of b12 injections probable cause pilori bactor infection which I had antibodies for and a recent gastroscopy has said I am now clear just mild gastritis. I only asked for my b12 levels to be checked as symptoms were back.
That should add more weight to your claim personally. H pylori is one of the few causes of B12 deficiency (diet is about the only other one) that can be 'fixed' to allow normal B12 absorption to resume without treatment. All other cases consider the injections to be required for life.
The key is the symptoms though - the numbness and tingling (paraethesia) is a clear sign of potential neurological symptoms which override even a 'normal' level of B12 serum.
There is a more accurate test that checks the 'active' B12 in your blood, as some people are not able to use the B12 properly even when the levels are normal (This test is only useful before injections though, as after that the blood levels are always high and are not useful)
In your case, if it had purely been the infection that caused it and that is now 'cured', then I would expect your levels to be much higher - In some of the official guidelines 200 is the cut off point, in others 150, but you are below both (some countries have much higher cut offs generally).
I think the key is to get together some information and go back armed with it - or write if that is easier. It's much harder to argue with clear, referenced and nationally recognised guidelines and figures.
As already mentioned, Folate and also Iron levels may well be relevant - as would a full Blood count, to check whether you have the signs of anaemia (I have the symptoms, but not the classic blood test signs).
You may have to judge the best approach with your GP - Some refer more easily than others (even if only to stop someone coming back), some react well to a patient who has done the research.
Perhaps keeping a symptom diary would be useful to show him/her just how much affect it is having on your life.
It may also be worth looking at contacting the Pernicious Anaemia Society directly, as they can intervene in some cases with the GP.
Good luck and do keep us updated.
Gavin
All interesting stuff, I'm now in my mid fifties and suffered with various stomach problems over the year, from ulcerative colitis, to duodenum ulcer, and last year a stomach bleed, and eventually treated for H pylori at the same time, and I suffer with real bad skin flare ups, which meant I've had several general anaesthetics for for removal of the abcesses, and been free from headaches until recently but mine have come back with a vengeance, but always whilst I'm asleep, so I believe the gas used in the anaesthetic has effects long term on the way the stomach functions, and also I've been on long term omeprazole and this to I believe hinders the way B12, is absorbed, so I'm on foliate tablets and now having to get a B12 injection every other week for 5 injections in total, dunno how low my count was, but due back tomorrow with the nurse, so on might ask, and yep pins needles and tiredness a big problem along with my skin problem and night time headaches feeling drained, hopefully you'll feel better soon.
Hi Bunnybin,
Are you in UK? I'm asking because patterns of treatment for B12 deficiency vary from country to country.
Some B12 info
(Some may not apply if you're not in UK)
1) Lots of B12 info in pinned posts on this forum. I found fbirder 's summary of mainly UK B12 documents useful to read. Link to summary in third pinned post.
2) BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
UK document that outlines diagnosis and treatment of B12 deficiency and folate deficiency. I'd recommend reading whole document if you're in UK.
Flowchart from BSH Cobalamin Guidelines
stichtingb12tekort.nl/weten...
"Gp stats that not deficient as bove 130"
Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start initial B12 treatment. This applies whether or not B12 is low or within range. Flowchart outlines when PA (Pernicious Anaemia) can be diagnosed.
IFA test can help to diagnose PA but IFA test is not always reliable and it's still possible to have PA even if IFA test result is negative (called Antibody Negative Pernicious Anaemia).
3) BMJ b12 article
Emphasises the importance of treating patients who are symptomatic for B12 deficiency even if no clear B12 deficiency in blood tests.
4) B12 books
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy of this book to my GPs.
"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 book about B12 deficiency with lots of case studies.
5) Lists of B12 deficiency Symptoms
pernicious-anaemia-society....
I gave a copy of PAS Symptoms Checklist with all my symptoms ticked (plus I added any symptoms not on list) to my GPs.
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
6) Risk Factors for PA and B12 Deficiency
"strong family history of autoimmune problems"
This could increase your risk of developing PA. Another auto-immune disease that could affect B12 absorption is Coeliac Disease and there may be others. It seems to be quite common for people on this forum to also have thyroid problems. May be worth putting any thyroid results you have on Thyroid UK forum on HU.
Coeliac UK
coeliac.org.uk/coeliac-dise...
Thyroid UK
7) Symptomatic with "Normal" range B12
Link about writing to GPs about B12 Deficiency.
b12deficiency.info/b12-writ...
Point 1 is about undertreatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic with an in range B12 result. There is a link to UK NEQAS B12 Alert in point 5 which may be of interest.
Person who runs website is sympathetic and helpful and can be contacted by e-mail. Contact details on website.
Lack of treatment for or undertreatment of B12 deficiency can lead to further deterioration including permanent neurological problems.
Some people on forum have pointed out the potential consequences of lack of treatment/undertreatment to GPs . There is an article on SACD (sub acute combined degeneration of the spinal cord) on PAS website available to PAS members.
pernicious-anaemia-society....
8) UK B12 treatment info
BNF British National Formulary Chapter 9 Section 1.2
Outlines recommended UK treatment for B12 deficiency with and without neuro symptoms. All UK Gps will have access to BNF. Probably a copy sitting on their desk or bookshelf. It's also possible to get own copy from a good bookshop or popular internet retailer.
bnf.nice.org.uk/drug/hydrox...
cks.nice.org.uk/anaemia-b12...
UK B12 treatment info is also outlined in BSH Cobalamin and Folate Guidelines (link to BSH document at top of this post), about a quarter through BSH document.
9) PAS (Pernicious Anaemia Society)
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
IF you think PA is a possibility then may be worth joining PAS. They are helpful and sympathetic but busy and may not have resources to help non-members.
PAS members can access lots of articles and details of PAS support groups in UK. PAS support groups may be a good source of info on helpful GPs etc.
10) B12 blogs
May be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.
Also an interesting blog about B12 issues on "B12 Deficiency Info" website.
11) Link about what to do next if B12 deficiency is suspected
b12deficiency.info/what-to-...
12) Further B12 tests and Test Results
Results of some tests may be affected if a person is already supplementing with B12.
b12deficiency.info/b12-test...
I always get copies of all my blood test results. I learnt to do this when I was told everything was "normal" and I then found abnormal and borderline results on copies.
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
nhs.uk/chq/Pages/2635.aspx?...
In relation to B12, I look at B12, folate, ferritin and full blood count (FBC). Have you had tests for folate, ferritin and full blood count?
There can be useful clues on FBC as to whether someone has B12 deficiency/folate deficiency/iron deficiency.
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
patient.info/doctor/folate-...
14) Unhappy with treatment?
letters to GP about B12
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and treatment.
Some people on forum turn to private sector for tests etc but this is no guarantee of better treatment.
I am not medically trained just someone who has struggled to get a diagnosis. I raised the possibility of B12 deficiency many times to many doctors as I was highly symptomatic for many years. When I exhausted every possibility of NHS treatment I resorted to self treatment and improved, some neuro symptoms disappeared.
My advice is be well -read about B12 deficiency and be prepared for doctors who may not be.......
From one bunny to another "Good Luck".
Yes in uk
Thanks for these links Sleepybunny. Very helpful to me right now
Thankyou ☺
FoggymeAdministrator
Hi Bunnybin. Good to see that you've had a lot of responses with some very useful information...so I'll just add a couple of comments...and leave you some more links...
So...the bottom of the reference range is 130ng/ml and your result is 136ng/ml...which puts you hovering along the bottom.
The first thing about the serum B12 test is that it is very inaccurate (misses 25% of people who are deficient and picks up 5% who aren't) and the second thing is that it should never be used as a sole marker for diagnosing deficiency (because it is notoriously inaccurate).
Your GP should be looking at your symtpoms, not just your blood results.
It's also possible to have B12 deficiency even if blood results appear to be in the 'normal' reference range (the blood results only show how much B12 is in your blood - they are unable to identify what is happening at a cell level - that is, whether the B12 is getting where it is needed in the body). It's also worth noting that B12 deficency can exist even if B12 levels are very high - even over the top of the reference range (not many GPs are aware of this).
As others have said (and in particular, where neurological symtpoms are concerned), symptoms take priority over blood test results - your GP should be treating you for B12 deficiency. And because you have neurological symptoms, all the guidelines state that you should be treated immediately (to facilitate optimum recovery).
You should receive the intensive neurolgical regime of injections (not many GPs know about this) - you should have 6 x loading doses on alternate days and then injections every other day until no further improvement (details about this,in link to the BNF below - your GP will have a copy and can look it up - but may have to read further than usual - it's the second item down.
A word about the BNF prescribing instructions...these state that this treatment regime is for those with PA and macrocytic anaemia, so,your GP may say...but you don't have these...and quibble about treatment...but...
The treatment for PA is the treatment for the B12 deficiency it causes so the treatment for B12 deficiency is the same - B12 injections - whatever the cause of the B12 deficiency (because there are quite a few). And...
20-30% of people,with B12 deficiency and neurological symtpoms do not have macrocytic anaemia, which often occurs o lay in the latter stages of PA or B12 deficency - and sometimes not at all.
Another thing - note that you have autoimmune conditions in the family - this means that you are more likely (but not certain) to also have one. Your GP should test for anti-IF antibodies to see if you have PA (another autoimmune condition). But worth noting that 40-60% of people with PA test negative for this - so a negative result cannot rule out PA (your GP should consider diagnosing antibody negative PA if there is no other apparent cause for your B12 deficiency).
Also note that you have have Heliobactor pylori infections - these infections are more common in people with autoimmune conditions - though nobody understand why. So...while this infection can be the cause of B12 deficency (a treatable/curable cause)...it can also be an indicator of an underlying autoimmune condition...like PA...or possibly, other autoimmune conditions.
So...it might be worth asking your GP to do an full antibody screen. This won't identify any particular autoimmune condition but if any of the results are raised, it will indicate that further investigations are necessary (usually be referral to a rheumatologist). This is quite important since the symtpoms of B12 defiency can also be the symtpoms of other autoimmune conditions and it would be well worthwhile ruling out any other possibilities for your symptoms (and, of course, it would be possible to have B12 deficency at the same time 😖).
Also worth noting that people with B12 deficency often have thyroid issues too. Has your GP checked your thyroid? GP's usually only check TSH but this alone is not a good marker of true thyroid status. Ask for TSH, FT3, FT4 and - because off family autoimmune history - the thyroid antibodies TPO and Tg (to check for Hashimoto's thyroiditis - another autoimmune condition).
Oh oops...back to B12 deficency...
So...all the guidelines state treat the symptoms not the blood results (serum B12 results)...something your GP appears not to be doing.
Print this document and take it to show him...it informs doctors to treat potential B12 deficency immediately if neurological,symtpoms are present...even if serum B12 blood results appear to be 'normal'
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
And the following documents speak to the problems associated with the serum B12 test...so, you'll know how to approach and frame the discussion with your GP:
stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)
stichtingb12tekort.nl/weten... (Testing B12 During Treatment)
And some of the things that GPs often get wrong:
stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)
And these are about B12 deficency being present even if B12 levels are 'normal'...and so should be treated:
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
And some other things to help:
stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)
stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)
And just in case your GP suggest oral tablets (some do and they're not recommended for those with neurological symptoms):
b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)
And last but not least, the BCSH treatment guidelines - a bit longer than the other documents but it has useful summary sections if you find yourself flagging - also think Eaoz has pointed out useful 'bits' in his reply below 😀):
onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders
And oh dear...sorry...I've been longer than I thought I'd be - sorry if it's a bit much to take in.
The very short answer should have been...yes....you need treatment for B12 deficency...and you need it sooner rather than later (I.e. Now).
Please do post again if you have anymore questions (you may well have by the time you've done reading 😉), or if you still have trouble getting your GP to treat you.
Let us know how you get on and take care 👍
Has a gp consultation over the phone today, still saying that it is only borderline so wants to repeat again. When questioned about it being low before he was dismissive saying I need to see after I have bloods done again. So frustrating as you feel as though they are not listening. I bet it would be different of they felt this rubbish!
Thankyou for all advise 😊
Sorry if I missed someone else asking it Bunnybin, but has your iron been tested? or a full blood count? There are cases where a B12 deficiency and iron deficiency can 'cancel out' in terms of blood cell size and therefore mask anaemia diagnosis (This would normally show as a higher RDW on the blood test.
I'm in the position of symptomatic anaemia at the moment, without the blood results to 'diagnose' it, but that is something that is now recognised that can happen in perhaps 20% of people with PA, which is why the latest guidelines tend to concentrate on treating the symptoms.
"gp consultation over the phone today, still saying that it is only borderline"
Some forum members write letters expressing concerns, extracts from B12 documents, lists of symptoms, blood results, consequences of lack of treatment etc
A letter to GPs, which I believe would be filed with medical records, might be harder to ignore or forget. link in my post above about writing letters to GPs about B12.
Do you have anyone supportive and preferably well-informed about B12 who could go with you to next appt? My experience is that doctors are sometimes kinder when another adult is present .
I took my mother in law last time to show her what I meant by wasting his time. I don't think she could believe what I was saying. She was shocked.
Now need to make another appointment next week as waiting for more bloods ahhhhh
Hi bunnybin
sorry to hear your frustration .I was in a position where my GP was not listening or taking me serious my B12 was Just in normal at 145ng/L range 130-800 but i had pins and needles at night and the forum members helped me get my B12 injections .I changed GP within the practice and started to be taken serious by the other GP trying a more relaxed GP could also be helpful.(or get an appointment with another GP)
As my last GP said i could overdose on B12 if she started injections as i was in normal range B12.And even if she could give them they could only be given every 3 mths ,but the new GP understood that the Pins and Needles i was getting was a symptom of B12 deficit and neurological symptom too ,I did everything the helpful forum members explained to me with the links etc and diplomaticaly showed the evidence in a polite way but saying i would like to start the loading doses and would like to get the B12 injections every Two months due to my Neurological symptoms .....and he agreed i was expecting more of a friendly fight on my hands,it wasn't perfect as i should have had more injections after the loading doses until the symptoms improved ,but as you have much more going on than me ,as i have normal folate and ferritin level and no PA im sure armed with a lot of info from the forum members you can get the treatment that you deserve soon just be firm with your goal and focused with the result ,when you next see the GP and write the things you want to say to take in to your appointment either read it ,or give it to the GP to read and digest and then add all the other good advice and take copies from the links above that all the have forum have kindly given you to back up everything.I think you just need to get a GP on board.
Even with my B12 injections every 2 months just 1 week before its due i get the pins and needles in hands at night and migraine aura starts increasing.
So good luck ,i hope it all goes well and remember your not asking for anything extra than you really actually deserve in your situation ,for good health ,which all deserve .Also remember you pay the GPs salary so the GP should be working for your best interest .
Your certainly in the right place to get
the best support here.
Best wishes.
Hi,
"need to make another appointment next week as waiting for more bloods"
Has the GP ordered an IFA (Intrinsic Factor Antibody) test?
What about MMA, Active B12 and Homocysteine?
If GP reluctant to order further tests I have sometimes offered to pay for them myself.....
b12deficiency.info/b12-test...
It's also possible to get them done privately......if you have supplemented recently with b12 then the results of these tests may be affected.
Have got a face to face appointment next week so watch this space. Oh forgot to mention they managed to loose last blood results so hopefully should have by the next appointment 😠
Latest, had a phone call from gp today saying that the doctor wanted to speak to me as b12 levels were low ha ha. Obviously they don't look at patient records as they would know I have already got an appointment on Wednesday. Don't know if they are coming or going. No wonder people feel like sxxt for so long! Head is pounding probably another bloody conection to low b12.
Finally a result saw gp locum who has started b12 injections, but only due to symptoms as says my b12 levels of 127 then 135 are only just deficient as their range is <130 ng / l : consistent with b12 deficiency. Now wants more bloods gastric parietal cell ab and intrinsic factor antibody. So let's see how long they give b12 injections as when I was deficient before they only gave 3 injections then stopped.
Ok joy short lived. Surgery was supposed to call me back to arrange injections with the nurse what a surprise no phone call even when i called to see if I could sort it myself 😠😠😠😠seems like the battle will continue.
Yey result start 6 loading doses of b12 on 30th 😆
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