I am writing to ask if anyone has had there injections stopped I have pernicious anemia and because my b12 levels are high they want to stop me having injections question is can they do this as I thought it was a lifelong injection just a bit fed up as I have no problems other than my hrt at the moment which I am trying to get under control other than that I feel okay my levels have been like this since last year so why now are they trying to stop them I am so confused and anxious as if I don't have the injections my neurological symptoms will get worse I'm wondering if anyone can help I don't self inject so it's a three monthly injection I'm wondering if the hrt patch can interfere with blood test results as both my thyroid and b12 have come back high.
Injections being stopped: I am writing... - Pernicious Anaemi...
Injections being stopped
My understanding is that you need b12 for life if you have PA. some doctors don’t seem to understand the serum levels may be high but doesn’t reflect how it is used in the cells. Mine is routinely around 1400 and I inject weekly. I’m sure admins will reply with advice on how to communicate with gp.
Hi Louisaw,
Sorry to read about your jabs being stopped.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neurological symptoms.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
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.
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, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
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.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Not currently taking on new cases.
Have you joined and spoken to PAS? They can offer support and pass on useful info.
Sadly they are used to people in your situation.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Will add more at some point so check back later today.
PAS website has lots of useful leaflets that some forum members pass on to their GPs including a leaflet "Treatment is for Life"
pernicious-anaemia-society....
I feel exasperated on your behalf....I'd like to say to them that the clue is in the name...
Pernicious means deadly, fatal....so to remove your treatment could have serious consequences.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of 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.
Low dose cyanocobalamin tablets are sometimes used to treat dietary B12 deficiency.
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
There are moves across UK to move more patients onto high dose oral cyanocobalamin tablets as an alternative to IM hydroxycobalamin injections which personally I have grave reservations about.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
Local Guidelines
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend you get hold of the local guidelines for your area and compare them with BSH, BNF and NICE CKS links above. Some of these local guidelines have been posted on the forum. Search forum posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to local CCG/Health Board asking for a copy of local B12 deficiency guidelines.
"if I don't have the injections my neurological symptoms will get worse"
May be worth pointing out to your GP politely in any letter or conversation that untreated or under treated B12 deficiency can increase the risk of permanent neurological damage including damage to spinal cord....might get them listening....
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 have pernicious anemia and because my b12 levels are high they want to stop me having injections "
I suggest you ask them directly in writing why they think having high levels is a problem.
If you know why they've done something, it's easier to argue against it.
PA requires life long treatment and there are other causes of B12 deficiency besides PA that also require life long treatment.
I suspect that your GPs have some misconceptions about B12 deficiency. See links below.
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 have.
Misconceptions about a B12 deficiency
(From Dutch b12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Testing B12 during treatment
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
TESTING B12 DURING TREATMENT (PAS article)
pernicious-anaemia-society....
PAS have a leaflet "Treatment Changed - What can you do". You would need to be a PAS member to access that one.
Some of the UK guidelines I linked to ,suggest that testing B12 levels while receiving B12 injections is unnecessary. Look in BSH, BNF and NICE CKS links for useful quotes to pass on to GP.
Blog post about help if your injections are stopped.
b12deficiency.info/are-your...
Links below are to threads where I left some detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.
Hi, I hope that this gets sorted for you, it is a constant battle to get treatment! I routinely have the exact same problem, and have to beg my GP for injections. As they routinely test my levels after injections and then tell me they are stopping them for good with no alternatives whilst I am still having symptoms.
I too suffer neurological symptoms, alongside depression, hair shedding and have recently been struggling with mouth ulcers, sore gums etc, which I found out at my final injections was due to having extremely low folate and iron which the GP had not advised me.
So I have been self medicating the folate and iron, but it is a struggle.
I can't understand how if a treatment helps they can continuously take it away and offer no alternative or guidance.
So I too will once again be continuing the battle of resuming treatment.
So very sorry Laura.
Mouth ulcers can also be a symptom of B12 deficiency, as I understand it.
So frustrating. Concise links to share with them
Note information between #4 and #5 -
stichtingb12tekort.nl/engli...
And this entire link -
stichtingb12tekort.nl/engli...
And another just for fun!!!! Insert wink.
stichtingb12tekort.nl/engli...
All the best to you.
I see Sleepybunny already covered these links. But good to highlight them again.
Can't be said enough times, Litatamon !
Louisaw : it is utterly disheartening to have to say that many people with PA/ undiagnosed PA/ other conditions requiring lifelong B12 injections have had them stopped. It is also inexcusable.
Just above your post in the daily list is a post from someone who has recently been diagnosed with PA or perhaps suspected undiagnosed PA: the surgery seem unsure of what they are doing or what the correct procedure/ practice protocol might be. This is also both common and inexcusable.
The reason that Sleepybunny gives so many links out is because, despite being exhausted /having cognitive and memory problems/ suffering from constant headaches and defective eyesight, we have to do all the research and reading to ensure we are sufficiently armed with medical fact, updated medical guidance, etc in order to fight our cases for treatment as individuals.
Why ? Because B12 deficiency is poorly understood by the medical profession, because it is skimmed over in training, because the range and severity of symptoms and the effect these can have on our lives are massively underestimated, and because none of this has improved - in fact, it has become very much worse since covid started and primary care became so remote.
As for the recent reliance on serum B12 tests to prove a PA "cure" has miraculously taken place, unbeknown to the patient: give me strength !
I used to believe that a pernicious anaemia diagnosis was guaranteed to protect patients against such whimseys.
Why would anyone stop an effective treatment for an incurable condition ? They should be relieved that you have coped so well on a 3-monthly injection- quite a few can't. Maybe they are unversed on that, too ? Funny - because everyone on here is well aware of it.
Besides which, guidance for those with neurological symptoms is for injections every 2 months, starting with every other day injections until no more improvement is possible- so you have been short-changed from the outset.
laura76191 - you should have your folate, ferritin and vitamin D routinely checked if you have B12 deficiency. My need for vitamin D was discovered when a Dexascan found osteoporosis of the spine, my need for folate and ferritin because my hair was still falling out and gums bleeding despite B12 injections: levels were low end of range, not out of range.
It took two years to get these to stabilise at optimum levels. Too much folate/ferritin can be harmful too, and so GP should be helping you to get the balancing act right over time. Unlike B12 -which they should not be constantly testing as your serum level will be high -and harmless. Pointless, unless they are suspect that you aren't responding to treatment - which can mean that you need to have your methylmalonic acid tested to ensure that you don't have functional B12 deficiency. Help not hindrance. My MMA took 3 years to drop down to within range- and a lot of additional B12.
None of this is my own opinion: it's all right there in the medical guidance and professional research in Sleepybunny's links. Take it easy, read it a bit at a time, get a printout of anything relevant to you and use a highlighter to point your GPs in right direction re B12 treatment - and patient treatment !
Also a good idea to keep a daily record of your symptoms and date of B12 injection - so that they can see (should they care to look) when B12 helps symptoms and crucially when it stops being so effective - some might say this is obsessive, others will begin to understand why it is so difficult to control impact on your everyday life. Which adopted position is taken will say more about them than you. So important with this to get the right treatment and support - and that means having to rely on your GP.
Best of luck.
Thank you, I really appreciate the advice. I don't believe I have ever had my vitamin d checked, so I will query this. It is just so hard to get an appointment atm, I am sure everyone is struggling with this! I think the main issue for me is they never explain anything, they didn't ever explain the condition and then finding out I have low iron and folate just at my injection was a shock. Especially as I was told I was getting no more treatment after this and I was slightly concerned that I had the loading dose and my symptoms have all come back within just under a month. But it is really nice talking to other people that understand, obviously I wish we didn't have to go through this, but I really appreciate you all :)Sometimes it really feels like the doctors just think it's in your head, especially with the fatigue and the neurological symptoms!
"I don't believe I have ever had my vitamin d checked, so I will query this"
It's possible to get blood tests done privately in UK.
Just search online for "private blood tests uk".
It's unlikely that GP will accept the results of a private blood test but a test result that shows something significant may be enough to nudge GP into doing the same test on NHS.
Ye, good idea....no point going osteoporotic just to make GP look bad !
I had my vitamin D checked privately for my own information, after listening to research doctor - Dr Carmel Wheatley, and was relieved to find it v. high.
Apparently good levels of D and B12 are also v. mportant during the pandemic. Most of those who died had v. low vit. D and many European countries have been giving extremely high doses of vitamin D as a treatment for Covid.
Dr Wheatley mentioned that there is a lot of research abroad that is unread by the West and considers vitamin B12, 'a pan vitamin'
Noticed high-level B12 and vitamin D started to get difficult to find in chemist's and places like H&B.
Oh, I hope they stock up again soon CC. I buy mine on line from Oxford Vitality, who provide good information as well.
Dr John Campbell has been a stalwart on this and providing data every day on utube during the pandemic
I get my vitamin D on prescription luckily -along with Raloxifene. I'm doing well most of the time with controlling B12 deficiency symptoms by frequent self injecting. Still have an occasional disheartening blip and still fail to see it coming -but much general improvement. As for the blips, best to try and not make too much of them, don't you think ?
Healing has thankfully also improved: broke a rib nearly four weeks ago, and it's now fine. Unless I eat a big dinner or wear my mask for too long - so snacks not meals and speed-shopping, no browsing for now.
So glad for you that rib has healed well in four weeks ! and B12 under control 🤗
....also managed to cut my finger last week with the secateurs while trimming the jasmine hedge. Lacking any synchronicity between hands and brain. So quite glad I've got fast healing now- and truly relieved that I'm no longer teaching woodwork these days ! Good to hear from you and thanks for the link, Polaris - how are you ?
Ooh, Jasmine hedge - sounds gorgeous! I'm v. clumsy these days - dupuytren's (Viking's Disease) in left little finger and am trying to stave off symptoms in the right hand. (Interestingly, found research that links it to Northern European ancestry and PA!)
Last year, could only trim half the lavender hedge each side of front door as, like you, nicked finger with secateurs and too tired to continue. Lovely surprise next morning when discovered my neighbour had quietly trimmed the other side 😍
Apart from this, like you, am glad to have B12 under control and, after suspected Addison's (again linked to PA!)last year, to have found relief from the awful anxiety symptoms that went with it after seeking help from amazing local herbalist. Fingers crossed I won't ever have to visit a GP again! Take care CC 🤞🤞
So glad you are finding help in controlling symptoms -and hedge.Jasmine hedge in front separates garden off from gravel of car park area. Originally a flat-warming present from my mum, 40 years ago : a plant in a basket.
Take care, nice to hear from you x
Partner went to GPs today -and was told that a lot of people prefer the current system - and it is likely to stay as a five-year trial !(Surely there can't be anyone who enjoys being triaged by an unknown receptionist?) GP also said she was very busy. Don't know why. Everyone I know is trying to wait until service returns to "normal": well, I'd better tell them not to hold their breath.
I'm not surprised doctors are saying people prefer the current system..... Perhaps she turned off her hearing aid.😂
Of what I've heard and read it's the opposite unless you are in the younger generation who tend not to need a more in depth diagnoses.
Wonder if A&E have noticed a huge increase in numbers of non-covid cases lately ?People who :
-have put off going to GPs
-have been put off going to GPs
-have been advised by the receptionist (now also doing triage) to go to A&E instead
-can't understand the new system
-can't hear well on the phone
-didn't hear the call back
-couldn't wait all afternoon for a phone call
-don't trust or like the particular GP who rang them back
-have no intention of discussing their problem with a receptionist
(for example)
I quite agree. I was advised to go to A and E. Nine hour waiting !
Yet going for my last injection just one person waiting to see dr. Yes I live in the sticks so the population around here is far less. I would hate to live in a town or city.
What's the answer ? When one part of the health systems passes the buck to the next, who already cant cope.
Beats me. Is this is the stepping up of the two-tier system ?
I have been reduced to 12 weeks from 6 weeks.
Leading up to and over 6 weeks In feel totally washed out.
The GP at our surgery who has decided this is now the leading partner. He made this decision without any prior consultation with me. He has treated me as though I am one of a flock and not as an individual.
The only reason forthcoming is that he is attempting reduce the footfall in his waiting room. It is neither a clinical or medical based decision.
It is disgusting what is happening, but it seems that there is a national move to reduce B12 injections whatever the cost to quality of life.
A campaign needs starting. We should all contact our local MPs and national newspapers.
With my case it seems that the GP is quite happy for me to feel ill for 50% of the rest of my life. He does not have my best interests at heart.
Speechless! I sometimes wonder if they are in the wrong profession.
"A campaign needs starting. We should all contact our local MPs and national newspapers."
The person who runs B12 deficiency Info website has been campaigning to get B12 ampoules available over the counter at pharmacies. See link to blog posts below.
There is also a petition to get B12 OTC on Change.org
change.org/p/dr-june-raine-...?
"it seems that there is a national move to reduce B12 injections whatever the cost to quality of life."
There are moves across UK to put more people onto high dose cyanocobalamin tablets as an alternative to IM hydroxycobalamin injections.
This is sometime promoted as easier for patients but my personal opinion is that it is being done to reduce costs.
The evidence that oral B12 tablets are as effective as IM injections is of low quality.
cochrane.org/CD004655/ENDOC...
pubmed.ncbi.nlm.nih.gov/295...
smw.ch/article/doi/smw.2017...
PAS news item on Oral Tablets
pernicious-anaemia-society....
Orobalin
Link aimed at health professionals about oral B12 available in UK.
sps.nhs.uk/wp-content/uploa...
Mentions a 1mg oral cyanocobalamin tablet available to prescribe in UK from May/June 2020
CCG (Clinical Commisioning Group) mentioned in link below already has guidelines that appear to put most patients onto oral b12 tablets. I feel sorry for any forum members living in that UK area.
b12deficiency.info/gloucest...
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Article suggests that there is no proof that oral b12 is as good at treating B12 deficiency as B12 injections.
Going to the Press
Sometimes it can be effective to go to the press but this is likely to place strain on GP/patient relationship.
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...
News story about MP in Scotland who raised concerns about treatment of patients with PA
douglasross.org.uk/news/mor...
I would love to see a really in depth documentary about B12 deficiency on TV.
May be worth contacting local tv and radio stations, magazines etc
There is a popular UK satirical magazine which has a column about medical stories. I'd love to see them do a story about B12 deficiency.
As I understand it you need to maintain B12 at a commonly accepted level within a range to maintain good health. For this reason you doctor should be assessing a reticular count to determine what injections you should have and how often. This is done by regular blood tests at regular timing. For me, after loading up, to 300 mg level, I am now down to 100 level but this is after 6 months. So I have now been prescribed a dose every month. After this another blood test will be done to see how that frequency sorts the issue.
This depends on which test you use. The UK test for b12 does not distinguish between active and inactive b12 in the blood, therefore it is only reliable to prove insufficiency. It cannot ever be considered as a reliable test for sufficient levels. The schilling test is not widely available in the uk, but this test does distinguish between active and inactive b12 to give an accurate reading.
You could not use the uk test to gauge how much b12 to supplement.
I think even Hsy and MMA tests are not accurate for measuring active B12. Some people have high B12 low MMA and low Hsy but still showing neuropathy with high folate and regular ferritin! I think there should be one more unknown factor in active B12 measurement.
Well im fixating on the effects of stomach acid on enzymes at the moment. My gastroenterologist wants to diagnose me with chronic pancreatitis which just doesnt seem right for me - the pancreas is healthy and i have no pain etc. When I add more acid to my diet (vinegar, lemon juice etc) I notice a huge improvement in my stool. This improvement indicates better absorption and nutrition for me. My advice to anyone with b12 deficiency is: dont listen to your gp; get tested for PA more than once; self inject until you feel better or insist the gp does it; print off NICE and NHS information for the gp; supplement with a good all round multi vit and mineral every day; add natural acid to your diet if you have pa; dont suffer needlessly because you dont want to challenge the dr or they wont give you what you need. Change gp, ask to see someone else etc). The injections work but they take time - your depleted b12 stores need to fill up before being used efficiently. That took me half a year of every two days. Now im monthly.
I’m having the same problem with my GP, she stopped my B12 injections, Feb 2020. Rang during lockdown to request my usual injection in May that year and was told I wasn’t going to be able to have it as there was a pandemic. I would be able to manage with my stores for up to 2 years, if I was worried and showed signs of any neurological symptoms I was to purchase B12 supplements over the counter. Told them I was flabbergasted, I rang them several times during the months after to be told off for ringing, THEY WILL RING ME!! I was told. I found a nurse privately so she administered it for me. RELIEF expensive though, but very much what I needed After no B12 for 6 months I was feeling down and felt pretty weak and the pins and needles started again. Have lost my appetite and my digestion is shocking. I feel very disheartened as the relationship between the Doctor and myself, I feel has declined. I was diagnosed in 2000 with pernicious anaemia, even then the doctor I was seeing didn’t have a clue. After the advice and support I have read, I will probably need to write to my GP, as obviously they have no idea about PA. I was under the impression that injections were for life and testing bloods only proves the treatment is working
Hi KTE55
Might be worth you starting your own thread with your story as you'll get more responses that way.
If you have time, have a look at the links to other threads I put at the bottom of my first reply on this thread. There should be a lot of useful info in them including a few hints on dealing with awkward GPs.
"was told I wasn’t going to be able to have it as there was a pandemic. I would be able to manage with my stores for up to 2 years"
I suspect your GP did not read updated BSH guidance during the pandemic.
See links below to PAS news items
Updated BSH guidance on B12 treatment during pandemic
pernicious-anaemia-society....
Link about contacting NHSE about treatment concerns during pandemic.
pernicious-anaemia-society....
As you have a PA diagnosis, I recommend joining and talking to PAS (Pernicious Anaemia Society who can offer support and pass on useful info.
Sadly they are used to people contacting them about injections being stopped.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership
pernicious-anaemia-society....
PAS have lots of useful leaflets/articles including
"Treatment is for Life"
and
"Treatment Changed - What can you do?" .
You would need to be a PAS member to access these two.
Some forum members pass PAS leaflets to GPs.
pernicious-anaemia-society....
Proof of Diagnosis
I suggest you think about accessing test results/medical records and getting proof of your PA diagnosis.
Some forum members with a past PA diagnosis have queried treatment being changed/stopped and have been told that there is no record of the diagnosis.
Unhappy with Treatment (UK info)?
Useful to put queries about treatment into a brief, polite letter as harder to ignore and maybe copied to practice manager as well as GP.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptom present.
If I've understood you correctly, you've not had an NHS injection since Feb 2020.
Is that true?
Try to track down the local guidelines on treating B12 deficiency for your CCG/Health Board. Some of them will have a statement on B12 treatment during pandemic. Hopefully you are not in an area of UK that has unhelpful local guidelines.
Suggest you also consider contacting your local MP about being denied treatment.
Maybe consider making a formal complaint about lack of treatment...this is not an easy option and is likely to put great strain on GP/patient relationship.
citizensadvice.org.uk/healt...
Maybe even the press?
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...
Untreated or under treated B12 deficiency can increase the risk of permanent neurological damage including damage to spinal cord. Might be worth mentioning this in any letter to GP as should help to concentrate their minds.
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 am not medically trained.
Apologies to Louisaw for putting a long reply to someone else on your thread.
Your GP may hopefully be influenced by information *** in BMJ Research Document and reinstate injections - symptoms are the only reliable indicators and injections are for life:
"How is response to treatment assessed?
Patients often have a sense of improvement within the first 24 hours of treatment; however, the haematological response can take several days before the effects are first noticed and up to two months to complete response.3
Initially, a full blood count and reticulocyte count after 7-10 days of treatment is useful to document the response, and a further check should be done after eight weeks to confirm a normal blood count. When there is inadequate reticulocytosis, an incorrect diagnosis may be responsible. Within eight weeks of treatment the mean cell volume should have normalised (77-95 fL). Iron and folate status should be checked because coexisting deficiency is often obscured in vitamin B12 deficiency.22 29
Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist.
***Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."
Good luck louisaw 🤞🤞
I am in the UK and I sent a letter to my GP to be put on my medical records about testing B12 levels. It stated that I have Pernicious anemia and I am on B12 injections for life and once on them B12 levels do not need to be tested and that they should be going by symptoms. I received a letter back saying it has been put on my medical records and I always check now when I have other blood tests that B12 hasn't been included
Good for you, Rocky ! Unfortunately, I have never been diagnosed with pernicious anaemia -but I still doubt that I'd have had the foresight to do that. Hope you kept a copy of that initial PA finding- just in case.
My GP told me that there was no point in testing B12 when having bloods done, as we both know it will be high. Not all GPs realise that treatment needs to be very frequent in some cases, at least until no more improvement can be gained. I've not given up on that bit yet. After all, it took two years for my ferritin and folate to normalise and stabilise, and my MMA took three years to do the same.
Why do so many medical professionals think this is such a piece of cake ?
I got advice to do it from another Pernicious anemia group and it was a template letter. I have got a copy of my medical records too and I have a copy of my Pernicious anemia diagnosis. I wish the professional's would learn more about it and realise the damage they can do to us
My GP always automatically prints out copies of blood tests for me. Another reason why I'm not keen on this new surgery system lasting too long: no continuity for those with chronic conditions or a complex medical history - plus the chance that you'll get stuck with a GP that thinks B12 deficiency is a bit of weariness.
I know and you sound like you have a good GP. Unfortunately I have had to complain about mine and I agree about the way the Surgeries are being done at the moment
Good for you. My GP just show me my tests results on monitor and I have t take photos by my phone!
Luckily I kept records of all my test, mri etc., and got my injections reinstated after writing to my surgery.
The trouble with professionals do not realise the damage done to us until its too late because they cant SEE or FEEL the damage, and think we have vivid imaginations.
Then the healing process starts and doctors think
You should be running around like a ten year old, when in fact sometimes the healing process is so much worse than expected, the pain in the muscles, the electric shocks shooting through the body........ they (the professionals) are just not aware of this. I just wish we all could put a stop to this injustice!
I know and I do too
Hi there. I don't post on here very often at all. However, your post struck a chord with me. I'm very sorry to hear your b12 injections have been stopped due to high levels (they need to be to function and will be, due to injections) Gps don't seen to understand this.I was diagnosed with PA 16 years ago, left with permanent damage to my heart and various other debilitating problems. Two years ago, after my gp retired, there was a huge audit on all b12 recipients in the practice. I was informed I would be moved to 4 injections a year instead of the 12 a year I had been receiving for many, many years. I'm a medical professional so believe me, I put a good case forward to fight to have them reinstated. No matter what I did or said or whatever evidence I put forward to the Practice partner, she would not change her decision.
I contacted PAS who sadly were of no help what so ever. I was simply told, oh yes....it happens all the time.
They will want to retest you and no doubt tell you, you don't have PA.
Gps make no money from giving patients life saving b12 injections so to put it bluntly, they would prefer to stop them all together and move you to oral b12, which is of no use for us PA sufferers.
My best advice is yes, first and foremost..fight to get them reinstated but failing that, try to self inject if you can.
I'm so very sorry you're going through this and I wish you the very best if luck.
Warmest wishes
Ali. Xxx
I agree with you, when they stopped my injections last year I was so upset, and complained to doctors, on the same phone call was told it was non negotiable. My point I never asked for b12, it was doctors who said I needed it. Then decide we don’t need it. Crazy!!!! I suffer with depression, and I seem to get very agitated just before injection due.
My Dr gave me B12 shot for three days then stopped them cause he said my B12 blood work showed it was over 2,000 so said I didn't have PA. After four weeks of me getting worse each day... more fatigue, could hardly walk or stand much... I went back to Dr and insisted he give me b12 shots, I ask him about the mthfr test...it showed I have both gene mutations, which Dr forgot to tell me. The B12 shots are slowly now working and Dr assured me I can have them till I feel much better. Your high B12 blood work should be your Dr first clue to having PA....you should insist that you should be able to get shots. ...it cannot hurt you, and will likely help you.
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