At my previous doctors, Over 12 years ago, I was dx with PA, blood tests proved this. Moved to my present doctor about 8 years ago, was given vials to self inject then bought my own as I was SI more regular. Last year with uncertainty of Brexit I asked for prescription. This resulted in a doctor I had seen only once telling me I was misdiagnosed and removing the DX off my file, he’s changed it to low b12 instead. Despite my official complaint the doctor won’t budge unless I go for a blood test to prove it! Having SI my blood test won’t prove it unless I stop taking b12 and getting poorly again. The medical ombudsman will not do anything as it’s not serious enough. I’m stuck, has this happened to anyone else? I think if I had seen my regular doctor she would’ve reinstated it as she knows me but my doctors are not seeing patients. I will obviously carry on treating myself but I am so angry they are allowed to do this.
Doctor wiped diagnosis of PA off my file - Pernicious Anaemi...
Doctor wiped diagnosis of PA off my file
Ask the idiot doctor what the cause of your low B12 is.
Attached is a table from the British Committee on Standards in Haematology paper on B12 deficiencies - onlinelibrary.wiley.com/doi...
Show the doc this paper, pointing out Table 1.
Tell him that you're not infected with H.pylori, Giardia lamblia, or fish tapeworm. You haven't had gastric resection for obesity or cancer. You don't have coeliac disease, tropical sprue, or Crohn disease. You eat a diet replete in B12. You are not an infant, child or pregnant.
So you have a malabsorption disorder, either Pernicious Anaemia or achlorhydria. Ask him which it is, and how he knows.
That is unforgivable!
Is there anyone else higher up - beyond the surgery - eg your local health authority that you can write to?
If not, or as well as, this definitely warrants a letter to your MP.
I know Matt Hancock is a bit busy at the moment but he has a team who will have people available to at least log your complaint so worth copying him in too.
If you SI immediately (less than 48hrs) before a test and don't tell them you might be able to trigger an IF reaction any way!
How about asking for a copy of your notes or even just blood test results covering the period you were tested and diagnosed. Then at least you have the test result as proof.
Thankyou there is no one higher up that is interested but yes maybe a MP letter! I have copies of my records with the tests years ago confirming my PA but it’s disgusting that a doctor can do this
Yes - B12 injections historically were given for tiredness many many years ago without PA diagnosis - guidelines are that intrinsic factors must be assessed on many patients who don’t have evidence- high % have managed with low B12 on medication recently as they don’t have PA - Guidelines change - this will be quite common going forward
"B12 injections historically were given for tiredness many many years ago..."
Really ?
It was also used as a leukemia medication for children.!
I'm not sure that the various uses for B12 would warrant taking people off successful treatment programmes without discussion or consent, trial or monitoring though.
Frenchiebabe : I'm not sure that B12 injections were ever historically given for "tiredness" either. As for "many many years ago": artificial B12 wasn't made until 1972.
Fortunately, some grateful members of the forum will be able to vouch for this !
Or that a high percentage have been managing "with low B12 on medication recently as they don't have PA". If that means that during the pandemic they've been managing on B12 in tablet form, I would question that : how would anyone know if they're self-injecting or struggling ? No-one's making those checks.
Or that guidelines are that intrinsic factor must be assessed on many patients that don't have "evidence". Since when has it been the responsibility of the patient to provide evidence of their chronic condition ?
I haven't heard of the existence of any such guidelines.
As for this becoming common practice going forward - this would be a huge error in judgement, particularly since the anti-Intrinsic Factor antibody test will only give a positive for 40-60% of those with confirmed pernicious anaemia - so is not a "pernicious anaemia" test.
Besides, medical guidelines already state that this test cannot rule out PA.
Hi Frenchiebabe, I do have evidence that I have PA from my previous doctor who did all the tests, luckily I still have that information, not that it will do me any good.
If a buikder told me he couldn't build it the way I wanted it I'd keep going till I found one who would. Ive had wildly different opinions from doctors at the same oractice with the same symptoms...every one of them made totally different diagnosis...one ESR infection...one asthma...one allergic rhinitus...one told me the inner ear does t exist ...another ssid it could be s trapped nerve...another told me it definitely wasn't an infection another told me it was a severe mrsa infection... Ringing in the ears tiredness restless legs. I don't think its b12 either but b12 has helped mt tinnitus and itching sensation all over... So if I was on a treatment I was hapoy with and a new guy decided it was something else I'd be pretty pissed. Especially if he has no alternative solution to offer.
Here's a thought. Go online. We have my clinic..ie here I'm sure you have it where you are something similar anyway. You can get repeat presceiptions fulfilled. You have to pay but its worth it and less than going to a doctor. You have a orescriprion and a diagnosis and you just need a repeat prescription. So they don't do diagnosis over the phone except for relatively minor things. But they hand out repeats without much hassle. That's my advice to get you sorted asap and then you can think about finding another doctor longer term.
I have had to go through the process of contacting icap and m.p.My medical records were altered. I took this to my M.P.
He said NOT ANOTHER ONE, and when I said I had other Peoples records too, he said that it was impossible.
I sent him proof, and received letter back stating this was against data protection act.
Top NHS people came for meeting, Was I going to sue, No I wasn't. I forgave Dr when she said she knew nothing about b12 deficiency even though they were informed.
At the same meeting I said to the other Doctor I could not forgive him for altering my records. I was asked to leave surgery.
So I found new surgery, Monthly injections stop put on three monthly, I went down a different route and paid for B12 injections privately to keep me well.
Then due to covid couldn't get injections . Got to the stage were I couldn't walk again etc. I phoned the surgery
Begging for B12 Injection, HAVE you been diagnosed,
YES!. I told him what I had Numbness here there and everywhere . I got a jab straight away.
I decided I had to write them to inform them what had happened 13 years earlier, and that I HAD to know what my future treatment was going to be.
I asked them to contact a named specialist, John Radcliffe
Hospital, (letters I still have). I received letter from surgery, saying the investigation will take 5 days.
Day 5 I had a phone call from Doctor, asking if this was a complaint. I explained to him NO it wasn't a complaint only to inform them of what I went through and all the tests etc. This Doctor was very understanding, and that they now have the proof they need.
I happy to say my Injections have been re instated.
Having had to go through this twice my advice to everybody, KEEP all medical records, letters etc.
Tillie06, You have too get this reinstated on your medical records. The best way of doing this I Dont Know , but please keep copies of all correspondence.
I wish you all the luck in the world.
I’m sorry you had to go through this and thank you as it has really helped me
I didn't really want to reveal what happened it was all in the past, a nightmare Take cheryl claire advice and contact Martyn Hooper
You do need to get it sorted and once sorted
DONT LOOK BACK IN ANGER.
👍
Maybe the guy from 12 years ago will have a copy...how can they change the past? That's surely the entire point if a record is that you cant change it as it records the facts. I get that he can change her diagnosis now but how csn he change the past records?
Tilly- are you a member of the Pernicious Anaemia Society ? I feel fairly certain that Martyn Hooper will help you if he possibly can, to stop you having to go through the awful ordeal that Hidden was put through.We can't change this as individuals, over and over. It needs bringing out into the open to get it stopped. The sooner the better.
Hi,
Have you considered joining and talking to PAS?
They can offer support and pass on useful information.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS have a leaflet "Treatment is for Life" that PAS members can print out. Perhaps your GP would find this helpful?
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
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.
Proof a letter was received may be helpful if there is need for a formal complaint.
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.
If your GP refuses to treat you, you could draw their attention in any letter to the increased risk of permanent neurological damage if a patient is untreated or under treated for B12 deficiency.
"I have copies of my records with the tests years ago confirming my PA"
Maybe you could send copies of these records with any letter to GP or include quotes from them in the body of any letter you write.
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....
Retention of UK medical records
bma.org.uk/advice-and-suppo...
There may not be 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)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
CAB NHS Complaints
citizensadvice.org.uk/healt...
Local MP may be worth talking to.
A few people go to the press although this may impact on the 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...
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
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...
Each CCG/Health Board/ NHS Hospital Trust will have their own local guidelines on treatment/diagnosis of B12 deficiency. You could track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links above.
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites, B12 books etc
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
There is a PAS news item about contacting NHSE if struggling to get treatment during pandemic. They might be interested in your story?
pernicious-anaemia-society....
PAS have a survey running currently about people's experiences and problems with diagnosis and treatment of PA.
Well if your taking injections and have low b12 that would surely mean you can't absorb it? Or it doesn't stay in your system. I can't see how someone taking a high dose supplement or injection with a low level of it in their blood doesn't continue to need the high dose. That makes no logical sense to me. Is there any chance you can contact the 12 years ago doctor who made the original diagnosis?
I did think of this actually as she saw me when I was really poorly, thank you
Diagnosis is for life! Did you get a copy of your diagnosis?
Definition of PA
Doctor put my b12 schedule on my records.
My Doctor has stopped my b12 injection after 7 years!!
retraction of diagnosis for PA and uncertainty over what to do about it
