Back after a disappointing trip to see my GP. One more of 6 loading doses of B12 left and symptoms have just started improving thankfully.
I took the NICE guidelines printout which appeared to say that PA with neuropathy should be initially 1mg injection daily until no further improvement.
HE said that it’s “PA and other Macrocytic anaemias with neurological involvement” and because he believes that I do not have Macrocytic anaemia too ( showing me the blood results ) then he is not prepared to allow me any more.
Should I write a formal letter of complaint ? and if so I may get struck off ?? The guidelines look confusing on the face of it.
Thanks in advance for replies.
Carla x
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CarlaEP
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Get a second opinion. I had to go through all Gps in my practice . Bnf guidelines are very clear.
I also got neurologist to put on his letter to follow guidelines. I was put back on every other day.
Hope if goes well
As you've first lot gives you a bit if time but dont wait too long. I had a 5 week break that in hindsight did mr no favours everyone is different though so tiu may be okay for a while
Should I write a formal letter of complaint ? and if so I may get struck off ??
Rather than writing a formal letter of complaint , have you considered expressing your concerns about treatment in a thoughtfully worded polite letter to GP?
If you are struggling to get recommended treatment have you considered talking to your MP?
Letters could contain symptoms list especially all neuro symptoms, test results, dates of diagnoses, relevant family and personal medical history eg any family history of b12 deficiency, Pernicious Anaemia or other auto immune diseases, extracts from UK documents that support your argument, requests for referrals to specialists etc.
GP practices are not supposed to get rid of you if you make a complaint. They are allowed to "get rid of patients" if they feel the patient/GP relationship has broken down.
I'll add that there can be very subtle ways of applying presssure to people to get them to leave...it happened to me.
"appeared to say that PA with neuropathy should be initially 1mg injection daily until no further improvement"
I think the BNF and NICE CKS and BSH say loading injections on alternate days for as long as symptoms continue to improve then maintenance jabs every 2 months, for those with neuro symptoms.
Alternate days means every second day. There is no set time limit on how long the every other day jabs can continue for. If symptoms are still improving after 3 weeks then every other day jabs should continue .
If you write a letter to GP, I suggest you list the improvements in symptoms you have noticed.
May also be worth keeping a daily symptoms diary that tracks changes in symptoms over time and when injections are given.
This could be useful evidence of improvement or deterioration in symptoms for any GP you see.
PAS may be able to point you to useful info if you're a PAS member.
"because he believes that I do not have Macrocytic anaemia too ( showing me the blood results ) "
Might be worth including quotes from BSH guidelines and other sources that indicate many people with PA and other causes of B12 deficiency do not have macrocytosis (enlarged red blood cells).
I suggest putting quotes from relevant documents directly into body of letter rather than as attached photocopies as I suspect photocopied info may get filed in the bin whereas letters to GP are supposed to be filed with patient's medical notes.
There is a useful summary of B12 documents in the fourth pinned post on this forum which is worth reading.
If a patient has both B12 deficiency and iron deficiency then obvious signs of macrocytosis may be missing from Full Blood Count test results.
B12 deficiency ( and folate deficiency) can lead to macrocytosis (enlarged red blood cells).
Iron deficiency can lead to microcytosis (small red blood cells).
If your iron levels are below range or in bottom part of range, have you asked if it's possible that signs of macrocytosis from B12 deficiency are being masked by low iron levels?
Be prepared for GP/patient relationship to come under strain as some GPs find it difficult to cope with assertive patients.
I think a lot of GPs don't like to admit that there are gaps in their knowledge.
Get hold of the local NHS guidelines on treating B12 deficiency for your area of UK if you can and compare them with BNF, BSH, NICE CKS and BMJ article links.
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
You might be living in an area of UK where the guidelines have not been updated for many years. If the local guidelines do not reflect fully what is in BSH guidelines it could explain why the GP is being unhelpful.
Have you been formally diagnosed with PA (Pernicious Anaemia) or were you just told you had B12 deficiency?
PAS occasionally get directly involved on behalf of PAS members who can't get adequate treatment.
There are stories on Martyn Hooper's blog about how PAS supports people with PA or suspected PA.
The title of this thread suggests the GP has refused to give you any more injections.
Do you mean that the GP has refused to give you any more loading injections but is still going to give you maintenance jabs every 2 or 3 months in the future or do you mean the GP has given you 6 loading injections and isn't going to give any more jabs at all?
If you have been diagnosed with PA and GP is refusing to give you any more injections , I'm sure PAS would be interested in your situation.
The Nurse Practitioner said she thought I had PA as my haemoglobin had dropped to 114 ( below the 115 or 120 min level ) and in Sept 2018 my B12 level was 189 and the previous GP missed it. Since then my haemoglobin had dropped from 126 gradually to 114. The NP said she would have started me on injections in 2018. Worth a mention that I was diagnosed with fibromyalgia ( ? ) in 2014. Head pain, leg / arm pains etc became unbearable in 2018 and the old GP Put me on Zomorph. Current GP diagnosed “B12 Deficiency” but conceded yesterday after looking at Haemoglobin levels PA. I have joined PAS .
microcytosis ?? 27.3 MCV. He agreed to 6 loading doses and then once every three months. My head pain in less and my arms hands legs and feet feel improved, so too has my concentration and mood plus less back pain. I showed the GP the nice guidance and explained that I was improved but felt there was scope for more. He interpreted nice as PA and macrocytic anaemiaa plus neuropathy not just PA and neuropathy. Thanks for you help and support
If you haven't already, I suggest seeing which PAS support group is closest to you and log in to PAS website to get contact details then ring the group co-ordinator.
If there's no convenient group close to you then PAS are always keen to hear from people who might want to set up a new group.
In order to guard against future problems, I suggest trying to getting proof of your PA diagnosis in writing.
You could get access to and copies of your complete medical records and see if GP has recorded his recent opinion that you have PA.
Many forum members have had injections stopped when they see a new GP or move to a new GP practice and having firm proof of PA diagnosis can make it easier to argue for injections to be reinstated.
If there is no written proof of PA diagnosis in records, you could refer to GPs diagnosis with date diagnosed in any letters to GP.
Letters to GP should be filed with your medical notes so hopefully this will ensure your diagnosis is on record. Keep your own copies of any letters written to GP.
I also suggest keeping part of prescription form that lists your current medications as this should be proof that you are being given B12 injections.
"I showed the GP the nice guidance"
1) You could shove (politely) a copy of BSH guidelines under his nose.
3) As you are now a PAS member, it might be possible to arrange for your GP to talk directly to PAS. You would need to contact PAS to discuss this first.
A typical range for Haematocrit is 0.37 - 0.47 L/L
If your MCH is low and your Haematocrit is low that could suggest iron deficiency/microcytic anaemia. So could low MCV.
Your red blood cell distribution width 14% is quite close to the top of the range which might mean that there are red blood cells of widely varying sizes, possibly both microcytic and macrocytic cells.
Has GP ordered a blood film (also known as blood smear) as this might show both microcytic and macrocytic cells in someone with both low iron and low B12.
Might be worth accessing your medical records online to see if there are any ferritin or other iron test results from past. If not, perhaps you can persuade GP to do ferritin/iron tests?
"and because he believes that I do not have Macrocytic anaemia too ( showing me the blood results ) "
I wonder if microcytosis from low iron has masked signs of macrocytosis from low B12.
Have you asked GP a direct question about whether macrocytosis is being masked? It might nudge the GP into doing more tests.
B12 deficiency and anaemia
From Dutch B12 website so units of measurement and reference ranges may vary from UK.
I've also read that treatment with folate/folic acid may mask signs of B12 deficiency.
See link in one of my other posts about Folate Deficiency.
If your relationship with GP becomes strained then have you considered taking a supportive person with you to appointments, preferably someone who has read about PA and B12 deficiency and understands what you are going through?
NHS Choices has reviews about GP surgeries so you can look up what other patients say about GP surgeries in your area.
You’re a star ! I will make an appointment to go back and speak to him to request a blood film and iron / ferritin tests. Will try and take a friend too.
The title of the guidance (rather than guidelines) and the language of the guidance isn't always helpful.
Might be worth pointing out that the BCSH (British Council for Standards in Haematology) refer to cobalamin and folate disorders, which is somewhat clearer. They provide some clearer guidance in relation to B12 deficiency, particularly arising from absorption disorders
- details of the limitations of various test involved in diagnosing deficiencies, and that the IFAB test doesn't rule out PA as a possible cause.
- 20% of patients with B12 deficiency do not present with macrocytic anaemia
- symptoms take precedence over test results, and aggressive treatment in the case of neurological symptoms is particularly important, regardless of the presence of macrocytic anaemia, to prevent the risk of permanent nerve damage
and ask to be treated in accordance with these guidelines which reflect best practice in the UK
I have also sent the letter to my MP based on the example / draft in the PAS ( which I am so proud to be a member of this wonderful organisation ) so that he can lobby the Minister for Health and would kindly urge others to do so if possible thanks everyone for all your help. Carla x
You may find your letter is enough to make him reconsider. I think the trouble is that B12 deficiency isnt often seen as a serious condition by doctors and they are very ignorant of the effects and the long term damage that can be caused. Glad you got got a neurologsts appointme even though its a long wait......Id definately self inject if they refuse you whilst you wait for neurologist and let your GP know that you are. No need to hide that fact.
I let my current GPs know that I was self treating and pointed out to them that I had been forced into this because previous GPs had refused to sanction NHS treatment and I wanted to avoid SACD; I already had pins and needles in my spine.
Some GPs may react very negatively to patients who start self injecting.
I gave up worrying about the opinion of GPs several years ago when I realised that unless I got treatment I was headed for spinal damage and dementia; I already had dementia type symptoms.
Good for you Sleepybunny!! They do need to know or they will think their current protocols work when they dont for many.
I was lucky mine was amazed by the huge improvements once I started self injecting so once the neurologist agreed I needed them they have allowed me daily injections ever since. Its a fight I know but I hope that my stand not only helps me but ultimately will help others if enough of us do the same thing......well I hope!
Thanks CarlaEP......took a year from start to finish but worth it & also I hope Ive flagged it up with my practise now.....maybe it prompted them to look at the " others with the same symptoms who they dont prescribe b12 for!!" Well I can hope!!
Well Waveylines I’m so pleased for your persistence that is also helping others there too....it’s so important for us all so that others who may not be so informed can get the treatment they so need to prevent permanent damage. I have had very bad memory problems for years now and just hope that most of this nerve damage etc isn’t permanent.
Don't forget to ask for a copy of the report they'll send to GP.
You may need to hand in a signed written request to reception desk where you have your neurology appointment or contact the neurologist's Personal Assistant before appointment.
Some people who have white matter lesions due to B12 deficiency may get misdiagnosed with MS.
Questions for Neurologist
Ask neurologist to test your proprioception sense.
This is awareness of your body in space. Proprioception problems are associated with b12 deficiency.
Following tests should only be done by a doctor at medical premises due to risk of loss of balance.
Two tests that can check proprioception are
1) Romberg test
2) Walking heel to toe with patient's eyes closed
If you are not given any tests where you are asked to close your eyes I would query whether your proprioception sense has been tested,
Videos of above tests can be seen on Youtube.
I had mild proprioception problems eg I was wobbly when my eyes were closed or at night or when light turned off.
Thanks Sleepbunny, your help and information is invaluable I will be armed and ready lol.
I am sorry to hear that you seemed to sufffer so long before treatment. The description of your memory and ‘executive functioning’ seems so similar to what I have experienced over the last few years. I too have been good at Maths all my life ( my job ) which has been severely affected and have at times appeared incoherent especially drafting legal documents for example.
I had a tremor in my legs for years that no one could explain. Since being on b12 the tremor has much reduced but not gone all together. More recent symptoms have gone. However am still living in hope that my leg tremors will improve further in time. Its a crying shame that nhs dont test b12 more often and when they do are so rigid about the ranges......those protocols have caused no end of damage for many further compounded by an inadequate frequency of treatment. Makes me so mad especially as treatment costs are minimal! Lol... Dogma gone mad. Lol...
I'm still angry at times that I suffered needlessly for close to 20 years.
I agree waveylines that GPs are far too rigid about ranges. I was denied treatment partly because all except one of my serum B12 results were well within range despite me having multiple typical symptoms.
I also resent that I had to work out what was wrong with me all by myself.
Youre so right Sleepybunny.......so unfair -afraid that seems increasingly the case for chronic conditions. Am very grateful to this site & B12d.org site too. Information & connection with others gives powerful knowledge without doubt.
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Symptoms alive after loading B12 injections.
B12 levels 6 months after loading injections
Vision problems still after loading doses
