Hello,
I posted a few days ago regarding waiting for my MMA results. I received it this morning.
It's 1.09 umol/L range 0.10-0.42
'Markedly increased MMA concentration- this finding is consistent with B12 deficiency '
GP still trying to fob me off with supplements. After a bit of a battle he said he would write to haematology.
Any advice?
Thank you
Hi,
I’m sorry to read your history and I don’t know much about MMA but wanted to reply. The British Haematology Society has these guidelines
onlinelibrary.wiley.com/doi...
The National Institute of Clinical Excellence also has guidelines
nice.org.uk/advice/mib40/ch...
Please keep a diary of your symptoms, how they all impacts your life and that of your family. It maybe worth telling the specialist, overt vitamin B12 deficiency is readily diagnosed (meaning our blood results are so low, and our neurological signs are so obvious) but there is a population where it is not that obvious but given your history, your symptoms please consider a trial of vitamin B12.
I do hope someone else more knowledgeable will also reply.
Best wishes
Your GP should have you on B12 in order to reduce build-up of MMA.This can continue to increase if little or no B12 available to make necessary link. He should have done renal blood tests to eliminate any renal problem as cause, but this should not prevent starting B12 treatment.
A battle should not be necessary. Any marked increases should be seen as an indicator, and in this case, he has even been told the most likely cause. I don't understand the reluctance.
Perhaps you should ask for a second opinion, although I should imagine that the haematologist will tell him all of the above -and more !
If you don't get a phonecall back from the practice, call them.
Your MMA, without B12, will only keep rising in your bloodstream.
Hi Cherylclaire ,Thanks for your reply. I have recently had kidney function and efgr blood tests as part of my surveillance blood tests. Is there added renal tests I wonder?
I really don't know why GP is so reluctant. He did say that my B12 level was 198ng/L, 5 years ago so couldn't be pernicious anaemia as it would have fallen more than this in 5 years. Is this correct? He also said again that my b12 levels are normal not low.
I have contacted my Consultant's secretary. She is going to ask him his opinion as to whether a referral is necessary. She even said 'why doesn't GP start you on B12 injections?'
Thanks again for your reply 
She even said "why doesn't GP start you on B12 injections"
You, I and rest of us would really like to know why!
It would be interesting if it was
1. Ignorance
2. Against his health boards starting point for injections
3. Cost to the surgery
4. Not concerned about how you are feeling.
5. Not realise the consequences of leaving you in limbo/not knowing the damage it can cause.
I do hope you get this sorted a.s.a.p.
All the best.
Hello Hidden ,Interesting indeed! Likely a combination of all of the above!
Thank you very much
It makes no difference whether your B12 deficiency is caused by Pernicious Anaemia or not. Non-dietary B12 deficiency is treated by B12 injections. Even those with B12 deficiency caused by insufficient B12 in their diet would benefit from a loading dose initially, since they will have had to have used up their liver reserves first.
I had a look back to 2016 - and can see that I had liver function test, urea and electrolytes, bone profile and Autoantibody tests along with FBC, B12, folate, ferritin and vitamin D. These were either before or with MMA test, so assuming all related to the same search for an answer.
By this time, my B12 in serum obviously already high (over 2000 ng/L) as injections already started.
Whoever starts you on injections, keep tight hold of the paper copy of MMA test results which states quite clearly what they consider the likely cause. The link has been made already.
I am not a medical professional so cannot tell you if there are more tests necessary to rule out renal problems. I wish you well, and please let us know how you are doing.
Aahhh I didn't realise that injections could be given for all B12 deficiencies. That is interesting information.
I also had liver function and FBC in February.
I will keep the paper copy safely!
Thank you so much for your advice @Cherylclaire, it is very much appreciated.
Just as well that injections are given without proof of PA as a cause - since the Pernicious Anaemia Society survey published in 2014revealed that, of the 889 UK participants, 14% waited over 10 years for a PA diagnosis. Doubt they would've survived !
I know so little about it all @Cherylclaire. This is very shocking. It makes me feel so angry, it is there in black and white that I likely have B12 deficiency 😒.
Early yet, so take this a day at a time. Try not to get too angry -bad for heart and doesn't help you think straight- and concentrate any energy you can muster on getting what you need to get well.There are often quite opposing views on treatment amongst GPs, even within the same practice. Is there no-one else there you could see ? Don't necessarily need to waste time looking for a B12 expert ( thin on the ground) but someone with more empathy ?
Yes, you're right Cherylclaire I have spoken to two of the GP's and had a similar reaction from both of them. There is another that I could try. I have called the Pernicious Anaemia Society and they were extremely helpful and said they can help me if I don't get anywhere with GP practice.
Just come across NHS details regarding specialist and doctors.
Quote
"Whether you see a private Specialist, with or without a G.P. referral, or are referred to a NHS Specialist, your Doctor is not obliged to accept the Specialists recommendations "
What a situation to be in !
So you have a blood test stating the facts of this test and the cause, but it is upto your doctors whether you get treated or not even if you got the go ahead from your consultant.
So your doctor decides what is best for you even though the majority are ignorant on B12 deficiency !
Is it any wonder so many people are suffering !
This can go both ways though, Hidden , if you are lucky with your doctor. This is why it is so important to find a GP that you can trust -and stick with them.
I have a doctor who really does know when to ignore specialists:
- she ignored all three of the gastroenterologists when one after another said I had IBS
- she actually rolled her eyes when a haematologist told me that my dizziness was because I'm an ex-smoker and oxygen isn't able to reach my brain
- she was similarly unimpressed by haematologists who told me that B12 is highly addictive, carcinogenic, toxic
And when not to:
-she sought specialist advice when she gave me a diagnosis of functional B12 deficiency: she started my injections at an increased frequency - three injections a week - until no further improvements. Then once a month.
The consultants who deal with looking at DNA for inherited diseases told me that if they find evidence of an inherited inability to utilise the B12 in your system, they write to GPs and advise two injections a week for life - sometimes, to their frustration, this advice is ignored by GPs -and the deteriorating patients return to them for help. This must be because these GPs are exercising their right to ignore advice they themselves have asked for.
DNA .... giving indisputable evidence, not an opinion.
Like you said, no wonder people are suffering.
Yes ! Its finding the right G.P. or like many on here investigating ourselves.
Both.I'd even say it isn't vital for your chosen GP to know anything about B12 particularly. Most important that they can acknowledge any learning gaps and crucial that they then do the search. Make the connections. Start the referrals. Monitor visible symptoms, believe you about the invisible.
Care.
Like you said, we can do the investigations ourselves. Even when memory poor, or we have cognitive issues - there are people here who can send you the link you need and people who can help explain it.
Have you got a link to that quote Sallannl? Thanks.
Will find it and let you know !
I just entered into google NHS gp do not take specialist advice.
The link that came up was
nhs uk
Referrals for specialist care nhs
I only entered this as years ago as my nhs specialist adviced on b12 injections but GP refused, hence my TIAs, falling over etc.
I couldn't understand why they didn't take specialists advice!
Personally speaking the more you read into care/treatment the more confused I get!
Who do you trust G.P. (general Practitioners) or Specialists. While the G.P. and Specialist debate there differences of opinion the patient (piggy in the middle) suffers !.
I suppose that's just a fact of life today, until there are investigations done after a major incident.
Take the maternity cases, grenfell fire and cladding and the rest. When you look back at every bodies suffering in what ever case apologies seem very hollow. (Especially as the facts were there and ignored)
Sorry for the rant!
Don't apologise, I'm sure many of us have similar feelings.
Keep in touch , won't you ?
I certainly will update @Cherylclaire
Glad that PAS feel they can help.
In past, some PAS members have arranged for their GP to talk to PAS chairman.
Not sure if this still happens but you could ask PAS.
Some forum members have been helped by person who runs B12 Deficiency Info website.
As a last resort, some UK forum members resort to treating themselves.
There are forum threads about this.
I am going to write a letter to my GP practice Sleepybunny @ with the help of the b12 deficiency website templates. Thank you
Just to add: didn't you say that you had your consultant's receptionist's number ?Can you call to ask if the consultant could ring your GP ?
Perhaps this could be the push he needs.
Hi,
Some B12 links that might be useful...
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
b12deficiency.info/what-to-...
Have you thought about expressing your concerns in a letter to GP?
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering avariety of situations linked to B12 deficiency.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters brief, to the point and polite. Harder to ignore a letter in my opinion.
Keep copies of any letters sent or received.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Local MP/devolved representative may be worth talking to if struggling to get treatment.
Occasionally people go to the Press or other media.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
and a positive follow up story
eveningtelegraph.co.uk/fp/b...
Links about MMA
stichtingb12tekort.nl/engli...
labtestsonline.org.uk/tests...
UK guidelines on B12 deficiency indicate that a person who has the symptoms of B12 deficiency should be treated even if serum (total) B12 is within range.
Are your symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
MMA is mentioned in this document.
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above document)
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
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)
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
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. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
If you want to know why I urge UK forum members to find their local B12 deficiency guidelines, see blog post below.
b12deficiency.info/gloucest...
Two useful B12 books
(I think MMA is mentioned in both)
"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 guidance is out of date in above book, 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.
Films and videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
Have also read that a pepsinogen test can help to diagnose PA.
PAS website has lots of useful leaflets and a page for health professionals that your GP may find useful.
pernicious-anaemia-society....
pernicious-anaemia-society....
"GP still trying to fob me off with supplements"
There are moves across UK to put people onto high dose oral B12 as an alternative to B12 injections. This is often promoted as easier for patients but being cynical, I suspect the main reason is saving money.
Sadly, many of us have met health professionals who lack understanding of B12 deficiency.
It's useful to know the common wrong ideas in case your GP has some of them and try to collect evidence that will help you argue against misconceptions.
Misconceptions (wrong ideas) about B12 deficiency
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
I think Narwhal10 's idea of a symptoms diary is a good one. You could keep a daily diary which tracks changes in symptoms over time. It could be useful evidence to show GP/specialist.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Wow, thank you for all the information and links Sleepybunny , I will look through them all starting this evening. I want to gather as much info as possible before speaking to GP again.I would just like to get this sorted before it gets worse as my Dad has PA and so did my Grandfather (although he did have a gastrectomy)
Thank you
Hi again,
"my Dad has PA"
Does your GP know that your Dad has PA?
I suggest you mention this family history in any letter or conversation with GP and maybe pass on info from PAS or other sources about genetic factors in PA.
See links below.
pernicious-anaemia-society....
rarediseases.org/rare-disea...
There may be something in the UK B12 documents I listed about PA running in families.
Have you been tested for PA?
See link "Testing For PA" in my other reply.
Were you tested for coeliac disease?
Check guidelines below. UK GPs don't always follow recommended diagnostic process.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
More on Coeliac UK website.
NICE when to refer B12 deficient patient to haematologist/gastro enterologist
cks.nice.org.uk/topics/anae...
If you have neuro symptoms, I would expect GP to refer you to a neurologist.
NICE guidelines neurological referrals
Try to track down local guidelines on referrals to haematology, gastro enterologists, neurologists as local guidelines can differ from national guidance.
Referrals are expensive...so GP surgeries may be reluctant to refer. I used to put referral requests into a brief, polite letter and backed up with evidence that supported the request eg symptoms, comments from other specialists, quotes from relevant documents.
Against the Guidelines
If you are ever told "it's against the guidelines", ask to see the guidelines....or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a link to or copy of the guidelines. It's also possible to submit FOI request to GP surgery although unlikely to make you popular with GPs and practice manager.
GPs can use their professional judgement to prescribe off licence if they feel it is in patient's best interests. See link below.
gov.uk/drug-safety-update/o...
Have you tracked down local guidelines on treatment/diagnosis of B12 deficiency yet?
More about writing letters
(See letter writing link in my other reply)
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Evidence that a letter was received may be useful if there is a need for a formal complaint in future. Keep copies.
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 if relevant
extracts/quotes from UK B12 documents
referral requests
I think the shorter the letter, the more likely GP is to read it.
Keep copies of any letters sent or received in case needed in the future.
May also be worth keeping screenshots of online communication if appropriate to do so.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
"This is very shocking"
The sad thing is after years of being active on this forum, I am no longer shocked.
To try to be fair to GPs, they have very little time in their training devoted to b12 deficient. There is also ignorance among some specialists too.
I had some very difficult experiences and as a last resort had to treat myself after NHS refused to treat me.
There are case histories of people with b12 deficiency in the blogs listed below.
Worth looking at people's comments under the blog posts.
UK B12 Blogs
Martyn Hooper's blog about PA
(Martyn Hooper is the chair of PAS)
B12 Deficiency Info blog
Also many comments under PAS news articles which give an insight into people's experiences with PA and B12 deficiency.
pernicious-anaemia-society....
Next PAS news article had 104 comments.
pernicious-anaemia-society....
B12d.org
I've been told that B12d.org members sometimes have online Zoom meetings.
There are some case histories on website for this B12 charity based in Scotland.
theb12society.co.uk/ian-s-s...
I was very angry about what happened to me.
Time has lessened the anger but I am still upset about the loss of so many years. These days I try to use my experiences constructively by helping people on this forum.
Hi Sleepybunny
My IFAB and Parietal antibody tests came back negative.
I did tell the GP about my Dad.
I haven't been tested for celiac. I'm thinking of paying for a private test as I dread contacting the surgery.
Thanks again for the links
"I did tell the GP about my Dad. "
When you write your letter to GP, I'd mention it again in the letter as this should ensure that it's in your medical notes. GPs may forget/not records things said to them in a consultation.
"My IFAB and Parietal antibody tests came back negative."
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 - 20% of people with PA test negative on PCA test.
I'm guessing that there are a few people with PA who test negative on both IFA and PCA.
Sometimes doctors diagnose PA when it's B12 deficiency from another cause.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
As well as PA and Coeliac, have you been tested for
H Pylori infection
patient.info/digestive-heal...
Any exposure to nitrous oxide?
Nitrous Oxide
gov.uk/drug-safety-update/n...
NICE guidelines Nitrous Oxide ( see side effects section)
bnf.nice.org.uk/drug/nitrou...
Any chance of internal parasites eg fish tapeworm?
One potential sign of internal parasites is a rise in eosinophils, a type of white blood cell. Eosinophil result can be found with Full Blood Count results.
Search online for "parasites B12 deficiency" for more info.
Look at right side of this flowchart below. It suggests that B12 treatment should continue if patient has improved even if secondary tests eg MMA/Active b12/homocysteine are normal range.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Has your GP ordered homocysteine and active B12 (holotranscobalamin) ?
Was your haematology appointment with NHS or private?
GPs are sometimes reluctant to accept results of private tests but a significant result in a private test should be enough to nudge them to at least order the same test or refer you to a specialist who can order it.
If the MMA test was done privately, GP may want to repeat this test.
Have you asked your GP directly about Functional B12 deficiency?
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
Functional b12 deficiency is mentioned in Point 5 of the letter writing link from B12 Deficiency Info.
It's also mentioned in this NHS link.
nhs.uk/conditions/vitamin-b...
MMA, homocysteine and Active B12 (Holotranscobalamin) can be useful in helping to diagnose functional b12 deficiency.
"just like to get this sorted before it gets worse "
Vital to get adequate treatment for B12 deficiency. Denied, delayed or inadequate treatment could increase the risk of permanent neurological damage.
If GP remains reluctant to treat, may be worth mentioning SACD, sub acute combined degeneration of the spinal cord.
I am not saying you have this, I'm not medically trained.
I am saying that your GP and any specialists you see should be aware that SACD is a potential consequence of B12 deficiency. Mentioning it may be enough to get GP to pay more attention to you.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Sleepybunny ,
I will definitely include the information again in the letter.
My MMA test was requested on the NHS on the advice of a biochemist.
It is a GP who I spoke to over the phone who said that he is reluctant to prescribe B12 injections to me without referring me.
I was treated for a H Pylori infection a few years ago.
I had a private B12 test done in February which instigated testing by GP.
My active B12 was 32 pmol/L. I was advised it was low and to contact my GP.
I haven't had a homocystiene test.
Just ordered a celiac test which I should get tomorrow!
NICE guidelines Coeliac disease suggest that a person with suspected coeliac disease should
1) have tTG IgA test which checks if a particular antibody to gluten is present
2) have a Total IgA test which finds out if a person has IgA deficiency
The guidelines also suggest that a person should eat plenty of gluten in more than one meal per day for several weeks before testing blood. this is to ensure that there are plenty of antibodies to gluten in the blood.
A person with coeliac disease may get a negative result in the tTG IgA if
1) they have IgA deficiency
There are alternative tests for people with IgA deficiency.
2) they were not eating enough gluten prior to test
NICE guidelines Coeliac disease
Might be worth sending a copy of letter to practice manager as well as GP.
Although your IFAb (Intrinsic Factor Antibody) test was negative and PCA (Parietal Antibody Cell test was negative , there are reasons why these tests might be negative.
I'm not a doctor or biologist but I think....
Parietal cell Antibodies attack the parietal cells in the stomach. If the parietal cells are all destroyed then no Parietal Cell Antibodies will be produced.
Parietal cells produce intrinsic factor. If all the parietal cells are destroyed then no intrinsic factor will be produced therefore no Intrinsic Factor Antibodies will be found.
There may be other reasons...I may start a thread about this so keep an eye on new threads.
If you have time do some research on Antibody Negative Pernicious Anaemia.
Look at
1) BSH Cobalamin and Folate Guidelines as Antibody negative PA is mentioned in this document
2) Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" as this also mentions Antibody Negative PA.
BNF treatment guidance has changed since Martyn's book was written. See BNF hydroxocobalamin link in one of my other replies.
Also I have had lots of Gas and air over 14 years, particularly the last 4 and a half years . Three births and a couple of other procedures.
"I dread contacting the surgery"
Oh how I understand how you feel, at the moment you I and thousands more are in the same boat.
Sad indication of how things have gone today !
I pray that at some point you will be listened to and you get the help you and everybody deserve!
My husband thinks I should make a complaint. But I want to wait to see what they intend to do first
He is still livid with them for missing an illness 4 years ago I am too but I need to treat this matter separately.
We shouldn't be dreading contacting our GP's should we
☹️
Thank you
Yes I agree with you, most important is you health now ! And getting that sorted.I admire your strength after all that you have gone through and having to look after three children !
Making complaints takes alot of guts, and can have a detrimental effect on you life if you are not well.
The stress is awful, I've been there and at the end of the day nothing can repair the damage already done.
Best wishes
Completely. I feel so lucky that my illness was treated and cured at an early stage. It was my own persistence that got me that early diagnosis.
I will persist with this now and agree, even the thought of a complaint drains me.
I'm sorry that you you have had to go through such stress. Exactly!
"My husband thinks I should make a complaint"
If there's any chance of you making a complaint in the future, I recommend collecting the evidence sooner rather than later if you have the time and energy.
Have you got copies of all your medical records?
My understanding is that as well as digital access, you can request access to/copies of paper records. Records from a few years ago may not all be scanned online.
I know of two people who pursued formal complaints (not B12 related) and both found the experience very difficult. I suspect that if GP surgery or hospital think a complaint is possible they can become very protective of their staff.
Both the people I mentioned said that things they thought were in their records were not there.
There are advocacy organisations that can offer support to people pursuing a formal complaint against NHS. Search online for "advocacy nhs complaints".
As far as I know you do not have to give a reason as to why you want access.
See Access to Records links in my other reply.
BMA article on accessing medical records (16 pages in PDF)
bma.org.uk/media/1868/bma-a...
As you have given birth, you may be interested to know that birth/maternity records are kept until the youngest child is 25 in UK.
There have been midwives posting on here who have struggled with neuropathic type symptoms which they thought might be due to exposure to nitrous oxide.
The NHS page on pain relief during labour says that gas and air mix has no ill effects for mother or baby, it says nothing about how nitrous oxide could inactivate B12.
nhs.uk/pregnancy/labour-and...
Privacy
One thing I mention to people is to be careful about how much personal info they reveal on the forum to protect their privacy. Threads from HU can sometimes appear on other websites.
Thank you, I highly doubt that I will make a complaint. I just want this to be sorted one way or another and to feel better.
Thank you for mentioning privacy too
B12: 250... BUT MMA is ok. 
MMA homocysteine testing, Creon
Help with converting MMA result
MMA Testing; B12 Side Effects
Private testing for B12 and MMA (UK)
