I'm new here and getting more worried because at today's date 6wks have passed since my wife was diagnosed with PA by our GP. Having frightened my wife by the diagnosis and the literature provided there has been no 'follow up' or treatment offered from our GP and that's despite my wife emailing him and phoning for a doctor to speak with her. Just silence.
Left wondering why?
Haven't she received any treatment at all ?
Where did she get diagnosed?
I would recommend writing to both your GP and to who diagnosed her, stating that she had been diagnosed with P.A. and has yet to receive treatment for her condition.
Does she have neurological symptoms, if so also put this in a letter.
Treatment should be given as soon as possible, there could be a lack of communication between the two,or ignorance who knows!
But it is something you must follow up and having tried already to email and phoning it is advisable to write. Keeping a copy so you have proof, and they should normally have to respond within a few days.
Best of luck
Thanks for your reply.
Have written letters and emails detailing issues and still nothing and why MP is involved.
I sympathise with you, I had exactly the same problem nearly twenty years ago and had to get my MP involved. I can not for the life of me understand how a simple procedure can take this long.Hopefully your MP will give them the kick up the ....
They need !
Thanks for your response.
Our MP is now involved because there is just no communication coming from the GP and our concerns are rising as to why?
Would have expected the courtesy of a reply to one of the correspondences in 6 wks.
Courtesy is sadly lacking today. I hope your MP will move things along for you.
Thanks for your response but Covid or it's effects seems to have changed many things for the worse - this may be one of those 'things'.
Hopeful we may see a glimmer of common sense soon and yes she does have a number of neuorological symptoms which have concerned us for some time.
How are you?
If it wasn't for severe bad back I'd be fine. I now self inject b12 as the NHS has stopped it many times, last time over covid. This time it is taking that much longer to recover.I buy b12 from germany ...
IF your wife has neurological symptoms they should treat her with b12 every other day.
NICE guidelines !! Not always followed by GPs.
A severe bad back is no joke on it's own, has it got any better with the injections and do you have the injections more often when that kicks in?
We will keep the pressure on for answers but has NHS or the Local Region tied GP's hands? Are NHS/GP's 'fobbing off' others with PA on the guidelines, I wonder?
There is no doubt my wife has a number of identified neurological symptoms which have been passed on to the GPs over the last few years - so to be abruptly cut off immediately after PA was identified by the GP's seems very strange but no doubt we will eventually find out why.
There seems to be a great lack of knowledge and looking back I can see where Tinnitus, feeling cold all the time, foggy brain, fatigue, painful limbs and feet, optic neuritas (poor spelling) and sight issues may all have been indicators for PA but which the doctors just ignored or blamed on MS.
I inject about once a week, sometimes injections help, I just think it's due to my muscles not having recovered and doing extra due to partners illness ,like lifting things he would normally do !
I notice your wife has crohns also ! (A red flag for b12)
Treatment for b12 do vary from area to area, and NICE guidelines are not always followed. It very much goes down to your Doctor.
If you google your area for information on B12 you will find out treatment in your area. For example
GLoucestershire NHS B12 deficiency.
I am not sure on nhs services today, I think everybody knows someone who has been ignored or not taken seriously today.
We have waited nearly six months for physio for my partner, received letter last week, wrote to them telling them that leaving a person in so much pain sleeping on a sofa is really unacceptable.
They phoned yesterday saying he is now near the top of the list..... Too late has had to go private and MRI reveals inflammation of the spinal cord.
Again this could be due to b12, as he was borderline for 4/5 years.
I really dont know how to advise you when you are being ignored by the very people who are supposed to help you.
Thanks for your feedback Sallyannl.
They say knowledge is power. So at this time all is useful in understanding what is possible and what is not.
We are researching just as we were forced to do with my wife's chronic migraines when she was having so many.
GP's do not seem to understand that 20 plus migraines a month is completely debilitating and that changing the pills is not enough or that going private is not possible for a great many who suffer with constant pain of one sort or another.
As you have found in doing extra - it affects all in the house.
The next step is to assess what we can do with the knowledge gained as that is the key to the 'power' so your input is important in gaining an overall perspective.
Thanks again for that whilst you seem to have plenty to deal with yourself.
As I found recently B12 deficiency affects the myelin sheath of the spine which is what happens in MS all the time and why there is pain and breakdowns in nerve/muscle communications where limbs do not work.
So, it's not too big a stretch that inflammation of the spinal cord could be triggered by B12 deficiency?
My wife's Chrohns was recently diagnosed at hospital was being treated as IBS previously but beginning to think that B12 deficiency is the KEY factor affecting all else.
So many symptoms over the last few years which tick all the boxes for B12.
Thanks again for your input.
I am convinced the inflammation in his spine is connected to low b12 ..... doctors would argue though ! Discs are pretty much ok for his age, and his specialist is reluctant to operate, he was concerned about the covid jab he had just before the incident. He is now told not to have more at present same with flu jab. Having dye etc injected to spine next week.
You have to learn as much as possible, so you are not fobbed off by g.p.s with excuses. You will probably of guessed by now just reading others responses how little is understood with low b12.
Best wishes in obtaining treatment.
Thanks again for your input.
Strength of numbers and helpful input is always important for those who are worrying.
Talking does keep people sane.
Best wishes with both your back and your partner's back issues - hopefully they will both improve.
Thanks again.
I had to ring and book my b12 injections in with the nurse. Do that ASAP.
Thats what we expected but until GP actually responds to the letters which have been sent we do not know why they have not yet organised a strategy or advised what their strategy might be after 6 weeks.
No doubt you were requested by your GP to book the injection with a nurse? That would be normal.
But, we can only assume (as we have not been able to speak to Dr) that our GP has not noted on the records that injections are to be provided because nothing has been transmitted to us from our surgery which would confirm
I think at this stage I’d be contacting the practice manager to ask him/her to investigate why 6 weeks later treatment has not been started. I’d also mention the unanswered letters and (I assume) the fact that you’ve been unable to book a further appointment.
My GP was so good when I compare him to the stories I read on here. As soon as my blood tests came back confirming PA he phoned me up and asked me to come in for an injection. Sadly he’s now retired.
Thanks for your response. Everything copied in or emailed to Practice Manager although it appears that position is vacant at present. Our GP is the Senior in this practice - used to be so good and you could talk to him. But, that all seems in the past!
Just feel impotent as without communications what do you have?
Yes I've hadcthd same no acknowledgement let alone replies to emails zbd letters. It took over 6 weeks to get them scanned on my notes.
Can you go in person ?
Keep ringing.
The most important thing is to get your injections
Thanks Nackapan, how long ago was that?
Recently I had to write loads of letters ect as a nurse questioned my b12 injections .
At the start 2018 when very ill had to book my own treatment.
Yes on getting my results in person should've gone into thd next room and started treatment in Hindsight.
Wasn't treatment delayed by 5 weeks as not initially tested. But regfferdd fir a brain mri.
It happens all of the time.
Push push push
Had to fight agsin when covid hit abd go surgery doors closed
PA b12 deficiency is not taken seriously by the majority of medics
Thanks for responding.
The GPs are intelligent people and must know that the leaflets they provide provoke fear in the patient.
Non communication after PA diagnosis and leaflets to prove the point is in my mind cruel for the patient who does not then know what to do without being offered the treatment.
We are pushing on every door.
Hi Red, I’m so sorry to read. Please keep a record of all interactions, so Dr x informed you or your wife via telephone on 23 March 2022 at 10.50 a.m via telephone that she had PA because (please also get your wife’s blood results) and would need treatment of vitamin B12.
They provided information (leaflets) that were sent in the post or collected by hand on such a such date. The treatment offered was x or no treatment offered.
I have read the biography. Your wife has Crohn’s disease which is a malabsorption syndrome.
As well as the practice manager there is someone who has the role of a prescribing clerk. They are administrative staff with extra qualifications who manage doctors and their prescribing. i.e. Dr this person needs this, this that.
Keep a list of wife’s symptoms. PA society is in Bridgend and only £20 to join for silver membership.
Wish you both the best and whole situation gets resolved without further stress.
B12 deficiency should be treated as soon as possible to minimise the risk for permanent nerve damage. Does the GP know that?
It was the GP who provided the leaflets on PA and then said they would be in touch afterwards. They asked my wife to go the next day after blood test results as a matter of urgency.
Then they did the first step in providing literature. But, that was 6wks ago!
Despite emails/letters to them nothing has been responded to by the GP.
Seems ludicrous in this day and age but you cannot just visit our GP since Covid and although they have been asked to communicate by phone that hasn't happened.
Can't you book s telephone consult if you ring early morning tk be put on the list .I've found letters fo eventually get read but they ho in s pile of admin first yo be scanned onto your wife notes.
Theh are never read as sent
Then the gp hax yo be aware to read them. Thus takes weeks I've been through the process several times .
Or query with a nurse on the phone ax she will get the doctor yo lom snc action meanwhile booking them in.
Keep ringing. .
Keep turning at the surgery to get treatment .
By any chance in the letter you received did it mention buy over the counter ? GPs are now trying to get people to purchase tablets in stead of having injections. Just wondered if that was there approach!
Hi Salyannl,
No letter has been received.
PA leaflets were provided when my wife saw GP after blood tests confirmed she had PA - last they said then was we will be in touch and nothing since!
Hi red2022,
Sorry to hear of you and your wife's situation.
My surgery doesn't allow people to go into the building unless an appointment is booked and then you have to stay outside until called. But the reception are contactable by phone and at the door via a clear screen. Are you able to ring them and speak to the practice manager or at the very minimum one of the other reception staff?
Not all of the letters I've written regarding my issues (thyroid) are responded to despite also sending a copy to the practice manager though they do get filed with my patient records.
My fear is your correspondence could just get filed away. Are you in a position to be able to either contact by phone or visit the surgery's reception?
It's not right but it appears you need to be persistent and get the treatment your wife needs. I know from personal experience I've had to keep pestering them till I got what was necessary (in my case it was a referral)
I avoid and really don't like confrontation but I've had to be firm but polite and persistent to get the help I needed.
As Nakapan says above ring asap; please ring the surgery today.
Best wishes.
Time to look for a competent GP who cares, I was first diagnosed just before my hip revision and the hospital moved quickly to address my PA. Eight years later, I self inject and have regular blood work done. Take charge of your dear wife's health and demand they exercise their duty of care.
Thanks TorontoIslander for your input.
We are working on resolving this matter.
My wife's symptoms are increasing.
Despite further attempts to engage with the GP we have not yet received any feedback to our correspondences or telephone calls which were seeking a treatment strategy.
Thanks for your concern.
Hi red2022,
How did you get on with ringing your surgery yesterday?
Really sorry you are having a difficult time - hopefully progress will soon be made.
I was diagnosed with Crohns at 27 whilst in hospital with Ileo-caecal TB for almost 6 months. Lots of surgery and complications too. More gut surgery followed over the years and six monthly check ups for Crohns. Not once did anyone check my B12 in spite of not having a Terminal Ileum where B12 is metabolised.
At 59 I was diagnosed in Crete with Hashimotos - auto-immune Thyroid. And so another journey began. I then learnt about good levels needed of B12 - Folate - Ferritin - VitD - for good thyroid function.
I am now 75 and back in the UK. I self- medicate with both thyroid meds and B12. I am refused the T3 I take due to costs and buy B12 from Germany. Both T3 and B12 could be bought in Pharmacies in Crete for very little - no prescription required - very grown up !
Many symptoms of low B12/PA are similar to low thyroid so it is important to rule Thyrid out with the correct testing - rarely done in the NHS.
Always obtain copies of all test results so you are able to monitor progress and check what has been missed. They are legally yours ( at the moment ! ) You can request them over the phone and do not need a reason. Your surgery should have on-line access to patient records so worth checking.
Crohns as you know is auto-immune and often accompanied by other auto-immune issues such as PA and Hashimotos.
Happy to help 🌻
Hi Marz,
thanks for your helpful response.
Do you feel you now have the B12 under control and that you can be more active?
Watching anyone suffering from so many symptoms and now also knowing they may well be interconnected with B12 deficiency and may well have been for some time - seems like GPs do not have a clue
i.e. constant itching, coldness, gut pains & foggy brain and confusion all being looked at as possible allergy, IBS, etc ...
Thanks again.
I self-inject B12 weekly. Sadly the damage was done and the neuropathy in lower legs/feet persists exacerbated by complex spinal surgery in 2007.
If your wife has Crohns then knowing her VitD level is important. Needs to be around 100. Hence why copies of results are key !
Do you obtain copies of results - as mentioned above ? Has her thyroud been correctly tested ? Check out thyroiduk.org and look at Signs and Symptoms.
Many of us thyroid patients frequent this helpful forum as well as Thyroid UK.
Horrid itching was relieved once on Thyroid meds and later B12 injections. Fatigue and gut issues linked to both. You can check out my Profile by clicking onto my username Marz ....
Thanks Marz,
Lots of information and can see you've had more than your fair share of adversity.
We do not have very much useful health info yet.
But, that is our next step.
Roughly how much a month does it cost to do a weekly SI if you buy from Germany and is a prescription required?
Thanks again, gathering as much information as is possible before the next step whatever that may be.
Thanks for your help.
red2022
No prescription required. Cost ? Think it's around a £1 a shot. Click onto the Member wedgewood who gives excellent advice about ordering from Germany. Sadly we are entering a different time within healthcare - we have to take care of ourselves. Treating myself removes the stress of battling with the NHS. Sadly Surgeries make more money prescribing meds for undiagnosed and undertreated thyroid/B12D/PA etc.
Thanks Marz,
That's helpful will follow up on that info.
Sadly the NHS has become more of a battlefield and as you say extra stress in fighting the GP's and the NHS.
However, common courtesy would be nice!
Thanks again.
Red2022
If and when you experience good customer care these days - it has to be celebrated !!
Thanks Marz,
It's like a minefield, never thought our GPs would or could be so obstructive.
There should not be extra stress for those who are already stressed out by the diagnosis of PA. Particularly, when the symptoms are stressful enough.
The diagnosis itself is bad enough without the extra uncertainty of not having seen any strategy to combat it - but it does seem at times that Covid has changed much more than we imagined it could.
Simple courtesy seems to have been one of the casualties as our wait continues for any response from the GP.
Will have a look at wedgewood's responses.
Thanks again for your helpful input.
red2022
I had a similar issue - initial blood test result showed low B12 but no follow up which I knew wasn’t right (I had neurological symptoms). I made another appointment (with another GP) and treatment was started the next week. If I were you I would go down the same route - just make another appointment rather than sending any more emails that don’t appear to be being read. Don’t ask for a follow up appointment (in our surgery they’re few and far between and you wait weeks), request an emergency appointment and if they ask the reason say it’s personal (this way they shouldn’t persist with asking for more details). Quite likely it will be a telephone consultation but essentially that’s all that is needed. Good luck, I hope your wife gets it sorted out soon.
Thanks Cattywampus,
Maybe worth a try.
So far they have opted to be silent for some unknown reason (at least to us).
red2022
For heaven's sake change GP and report this negligent ***** to the GMC. I can't get over this doctor's uncaring attitude!
Wish it were that simple but we have persevered and our thanks to all the helpful and encouraging input from this site and it's members (which has also encouraged us to persevere) and which thankfully has now enabled her injections to start albeit weeks after they should have done.
Our thanks to all of you who have encouraged us.
Keep up the good work in enabling others.
red2022
Good to hear the news.... but have to add NOT BEFORE TIME !I do hope that in time you will find improvements and recovery will enable you to have less stress in getting support that your wife needs.
Thanks Sallyanni, but it's worrying for anyone feeling ill to have to struggle to obtain the necessary treatment after a diagnosis with PA.
We know we are not alone in that but we're also thankful to at last get on the first rung of that ladder!
We also now know that Metformin depletes B12 - my wife has been on that for 14 years.
We wonder just how long the B12 has been declining for and by how much each year?
red2022
I can understand your worries, as you now know this P.A. condition is so often overlooked/mistreated and often underrated by by the Doctors etc. There are so many medications dished out today that affect B12, so it is even more difficult in dealing with it.Your wife has probably been low for numerous years, but hopefully in time she will feel a lot better. At least now you are in a better place and getting treatment and aware that if needed can obtain B12 from Germany and self inject !
Wishing you well, and please let us know if you have any worries etc.
Thanks Sallanni,
Life is one long learning curve and we should never stop learning or seeking answers.
This site has been a revelation in content and experiences so will continue watching posts on this site as we progress and no doubt will be 'sharing' as we go along.
Thanks again.
red2022
Hi,
Apologies for not replying sooner.
Only got time for a short reply but suggest you look at these threads I've linked to below and my replies on recent forum threads.
I tend to post a lot of detailed info , some of which may have details that could be upsetting.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency.
NHS Complaints
patients-association.org.uk...
Care Opinion website
Local MP/devolved representative may be worth talking to if struggling to get appropriate treatment.
A few go to the Press/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...
NICE guidelines - patients' experience of healthcare
Adults
NHS Complaints Advocacy
voiceability.org/about-advo...
pohwer.net/nhs-complaints-a...
advocacyproject.org.uk/what...
There are other advocacy groups in UK besides these.
Search online for "NHS Complaints Advocacy".
Parliamentary and Health Service Ombudsman - England
See my recent thread about CQC (Care Quality Commission).
Beginner2 mentioned a patient safety officer for England.
Are you PAS members?
They can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has useful leaflets/articles and a page for health professionals that your GP might find helpful.
pernicious-anaemia-society....
pernicious-anaemia-society....
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
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 link outlines two patterns of treatment for B12 deficiency
1) for those without neuro symptoms
2) for those WITH neuro symptoms
Has she got any neurological symptoms?
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.
Local b12 deficiency guidelines
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.
See blog post below if you want to know why I suggest getting hold of your local B12 deficiency guidelines...
b12deficiency.info/gloucest...
If GP is reluctant to treat adequately, may be worth pointing out that inadequate treatment increases the risk of developing neuro damage, including damage to spinal cord.
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....
I think it's best to put concerns in a letter to GP, maybe copied to practice manager as well, as harder to ignore.
Sadly there's a lot of ignorance about PA and B12 deficiency among some health professionals. Links below explain some of the common misconceptions (wrong ideas).
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...
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 of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Thanks, Sleepybunny should have also added Practice Manager copied in on letters and authorities etc but still seems these are 'lost' when we refer to them i.e. sorry not on our system or we cannot see a copy of that in our files.
It is debilitating.
Also, this means the individual cannot rely on or trust the GP having anything in their files which have been sent - in one instance twice by email and also same originals of those letters dropped into the surgery by hand.
It is almost like Faulty Tower and comical if it were not dealing with patients suffering serious ill health!
Trust or now lack of Trust is a common issue.
"but still seems these are 'lost' when we refer to them"
So sorry to hear that, I am deeply cynical after some difficult experiences with health professionals. I always suggest that people keep copies of paperwork, screenshots of messages, recordings of appointments etc.
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...
BMA article on accessing medical records (16 pages in PDF)
bma.org.uk/media/1868/bma-a...
Has your wife looked into asking to record appointments?
If she has fatigue,pain, memory or cognitive difficulties, she would have a good case on disability grounds.
I suggest any request to record appointments is made well in advance in writing (keep copy of request) and that an explanation of why the appointment needs to be recorded is included eg
needs to be recorded due to poor memory
GPs etc are not likely to be keen but I can't see how they can refuse in her case.
If they do refuse to allow recording, consider taking it further to practice manager, CCG, local MP, ombudsman etc as could be discriminatory.
Links about recording appointments
bma.org.uk/advice-and-suppo...
More about writing letters to GPs etc ....
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) 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. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
Thanks Sleepybunny.
Thought provoking and helpful in going forward - for others as well as us.
red2022
GP visit following B12 retest
Worsening PA symptoms after Covid 
not PA, next steps
up to date with gp
