Worsening peripheral neuropathy has spurred me on to get the B1 def acknowledged by my GP. I have been SI since after Covid when the GP was giving me once in three months injections and another stopped them....grrrr. He asked me to find someone he could talk to who has similar patients. He has tested all of the normal stuff including MMA but obviously needs to 'mind his back' with NICE or whomever!! I will ask for a private referral to a neuropath privately because I am beyond exhausted fighting with him. I've sent him lots of info but he has read none of it and treated Club B12 like a 'support group'. I was so angry.
Any idea welcome!!
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auldreekie
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My own worsening PN made me get back on B12 SI. I am v glad to hear you are looking after you. I have recently learnt that just talking about it all can get you nowhere fast. I use two channels - very nice but firm letters and a non-combative verbal fencing game to just keep citing my persistent symptoms and NICE guidance.
So, I would suggest a business-like letter, not a complaint, to your GP ...AND.. also to the GP Practice Manager, would be useful to set the record straight on your PN issues, concerns and your request for more regular B12. Keep it as brief as possible.. i found that going on the written record, and staying on it helps a good deal...at least with getting the blood tests i wanted!
That's all if you are staying with the same GP? Sounds like he/she is having a laugh..?
Going private is a good start but they are bound by NICE requirements etc, and many are not up to speed as well...so pick your private doc carefully..
For my PN - in my feet and hands ...I was on 1mg a day SI for my SI initially, but only after a 3mg SI a day x 14 days loading cycle, did i feel any improvement = lift in the blanket of fatigue, better sleep, more clearer headed for long.. etc..
Sending best wishes and good luck!
PS...the lovely "TopTeam" we are lucky to have in here - will come along soon i am sure to provide much more comprehensive help/guidance...
hi again wwwdot …. A little further down the thread David Morris is recommended by another member …. Maybe your link deserves its own thread …. Thank you so much again for sharing it ….
My GP had no idea about PA so asked the haematologist who suggested that a rheumatologist would know best who suggested that a gastroenterologist would know best and the gastro said they would follow the advice of my GP so back to square one. The pass the B12 buck only took 22 months!
There needs to be a fifth rule - to acknowledge lack of knowledge and to address it. Currently, it seems that hiding behind the NHS ring-fence of "knowledge policy" and "practice policy" encourages the delusion of "doing good" and "not doing bad" when in fact they are doing the exact opposite.
Wwwdot has given great advice. So, let’s have a quick recap of Your Situation, correct me if I am wrong :-
i) B12 deficiency found, then treated with most probably loading doses. (Yes or No ?)
ii) Moved onto 3 monthly injections .
iii) Stopped by Dr Doogie Howser but you SI’d instead.
iv) New Doc Daneeka takes an interest, tests MMA and whatever else.
Even though the British Haematology Society specifies that NO FURTHER TESTING ONCE TREATMENT HAS COMMENCED and you SI, anyway.
Well, you know you said you want your B12D definitely acknowledged, well it already has been by :-
A) Initial positive blood test result on their computer system with your Name, NHS Number, Unit Number, Date of Birth, Time, Date, who ordered it from which GP Surgery, Name of Laboratory Technician, Machine used for Analysis.
B) Appointments on EMIS for 1 mg/ml of Hydroxycobalamin for you, your Name, your NHS Number, your Date of Birth, the Nurse who administered it, the Batch Number and the Expiry Date. Time and date given.
Yes, Doctors really do have their hands tied behind their backs. Every single Integrated Care Board (ICBs if you are in England) have Rules. This is how WE do it. WE are the Managers. DO NOT QUESTION US. Do exactly as we say. Do not go against US. Do not talk about us. Do not talk behind our backs and do not go behind our backs. If you ignore these Rules, we will make your working life extremely uncomfortable. If we hear of the slightest instance of you not toeing the line, we sack you.
Meanwhile, the ICB advertise statements to the General Public such as Your Health is Our Priority. Your nice GP who asked you to find someone he could talk to who has similar patients, ask him how many patients he talks to or sees on a typical day ?
auldreekie, he’s most probably a British Medical Association Member and under the Trade Union Act (2016) he is perfectly entitled to go on Strike. So, maybe now is an opportunity to tell him in writing, so again it is ON RECORD that you Self Inject. What can he say ? It’s Dangerous ? Addictive ? As he walks out the door heading for the Picket Line.
A Scab in Medicine is an encrusted layer to protect skin. I have crossed a Picket Line outside a Hospital, I was a Scab. Not only was it written into our contracts that we were not allowed to do it but it went against my principles. How would the women and babies survive without ANY staff ? I’m a Welshie and grew up in the Miners’ Strike. Men, women and children left on the breadline.
I too grew up where Principles counted (Lancashire), Principles mattered, doing the right thing mattered and people were quick to stand up and do the right thing.
Holding principles and caring for them seems to be an antiquated and outlawed attribute nowadays.
I am off to bed, as this is getting me down. I haven't felt this low in ages. I will be ok tomorrow - just need to regroup my resolve.
Wwwdot, I hope you slept well. Please try and not let things get you down. It all comes out in the wash. You do know who Doc Daneeka is ? And Dr Dougie Howser ? There’s Satire in the majority of my posts and replies. The community forget that I’m a Mathematician, an Engineer. So, the quickest, simplest solution in the Western World is by Computer Analytics aka Traffic.
So, auldreekie wasn’t aware with whom her GP would get into trouble with. So, I educated them. The acknowledgement of the condition is already there. In writing, it’s on their Hard Drive. Nobody can say it does not exist.
I asked a question the other day which is more important :-
i) Diagnosis ? OR
ii) Increased treatment for PA/B12D ?
If a person lives in an area where their cut-off for B12D is 100 ng/L what chance have they got to getting diagnosed ? Now, 8 years ago, auldreekie wanted research to show a doctor for re-testing B12 levels. 11 years ago, a doctor wanted me to stand on weighing scales, each time I politely said No, Thank you. Oh he didn’t like it but tough, it is MY body. It is heavily tattooed. So, when somebody took MY blood without MY consent, I wrote to the powers that be it was the tort of battery.
Neminem opertet legibus esse sapientiorem = No Man is wiser than the law.
I'll try to summarise!! Exhaustion for over 15 years. Various tests done including ABIF result not positive. Iron prescribed also. Banged on to GP in 2012 about exhaustion (same one as I am talking to tomorrow) he agreed to 3 monthly 1 mg injections until his colleague looked at serum B12 in 2021 and cancelled B12 . I SI'd to get along until last year when I found I hit rock bottom (injecting 1mg per month). Retired (69) May 23. Constant calls to GP about all of the usual symptoms (including very low bp - often 98/59) and sleeping over 10/12 hours a day. GP said I was depressed. I know what depression is my husband died in 2014 - I took no meds then, I am not depressed! I did and do refuse depression diagnosis and meds. I had a very promising phone call with the GP a couple of months back where he asked me for specialist/guru who could explain B12 def (as he conceded I obviously need injections - I'd improved after I started SI alternate days). He asked for info too. I sent him e mails with several links from PAS and Mr Green and Club B12 and asked here for any GPs who might advise him. I had a follow up face to face appointment where he asked why I was there!!! I asked if he had read the info. He said we only have 10 minutes... he could only find the Club B12 intro video (not my e mail) which he deemed patronisingly a 'support group' . He sent me off saying he was content that I SI'd. I was shocked and phased. Went home and filled in yet another 'triage' form saying it was as though we'd not had the previous phone call and symptoms are worsening (PN BP etc). Hence phone appointment tomorrow. I sent him a photo of the PAS Misconceptions about B12 but he won't have looked at it. And he has also done MMA test which of course is normal!! Sorry it's a book but it's a lifetime of battling as you know!
Thank you. He is happy you SI. I am extremely sorry that you had such a diagnostic delay and to learn of your husband. Please accept my heartfelt condolences.
I am currently reading A Time to Speak by Graham Pink, he was a Charge Nurse in Greater Manchester. He too is no longer with us. Nurse Pink wrote to everyone that he could think of to really understand what was happening. The man even offered to work for free so other nurses could be employed but management said NO. He was sacked.
The Public Interest Disclosure Act 1998 came into being as a consequence of Mr Pink’s unbreakable resilience. His tact, his diplomacy, his eloquence, his compassion, his voicing of the sheer privilege it was to be a Charge Nurse working with very frail, elderly patients with very serious and terminal illnesses often in a moribund state. Yet, every night shift, he had to single handedly run a ward with 1 or 2 assistants. It was impossible with the staffing levels. Graham was horrified in what he saw, what he repeatedly had to say to relatives and patients because he did not have the time, resources (equipment and medication) nor the manpower. The state of the NHS has declined with the pandemic and at least 13 strikes of Frontline Staff.
So, as a Software Engineer, I plan, design, create and maintain whole systems. The NHS was broken a long time ago. I am also a Qualified Midwife who has PA & other autoimmune diseases. So, I can very pragmatically say, please treat yourself.
He agreed to 3 monthly 1 mg injections
That record of time, date, by, where it occurred is a record similar to your birth certificate. However, another doctor had a difference of opinion. A further one has listened. How often do you self inject ? You might need more than that. Are you taking the co-factors ? Is your Worsening peripheral neuropathy something else ? Tested for Diabetes ?
People are so dependent on the NHS to diagnose, fix, treat, cure, manage. The expectation is too high but it is not there.
Everything to me is a record, an ISO 15489-1:2016 ; where ISO means International Organisation of Standardisation whether that is a phone call, a text, an email, a letter, a post on a website, a bank statement and even a conversation.
I gave up my 12 weekly injections, I saved my practice the cost of a Nurse, the needles, syringes, the sharps boxes, the appointments, the Hydroxycobalamin. Why ? Rwy'n Gymraes falch, Nye Bevin spearheaded the NHS in 1948.
What status does Club B12 have ? None at the moment, not a Plc, Ltd, not even a charity. So, not any Authority. Who is your Health Authority by the way ? Your GP is just a puppet on a string. So, plan for the worst meaning you carry on Self-injecting and hope for the best - your symptoms resolve.
Those strikes cost the taxpayer £ 1,500,000,000.00. It’s okay though, 11.4 million people this year will be left in the Cold. It just so happens to be frail, old and sick people again.
Hi Narwhal the GP today offerred to re-instate B12 once every three months. I will accept but continue to SI. He agreed the lower ref range for serum b12 is too low..will he re test patients..I don't think so. He is off the hook as no test according to PASO is definitive.
I will load dose for PN for14 days. I check sugar levels weekly. Is that sufficient do you think? Are co factors folate magnessium D3 mk7 biotin ..maybe iron but not well absorbed..
Thank you for your comprehensive reply. Treatment of whistleblowers has been topical of late...free speach huh?! As for £22 million to Africa for net zero when our old people freeze is inhumane. And thank you for your thoughtful condolences.
Hooray, he reinstated your injects that is an amazing result. Plus, it is brilliant that he acknowledged that the cut off level for B12 is too low. It is extremely likely that he would be fined for treating below that.
We have to maintain diplomatic relationships with Africa because that is where the majority of Cobalt is mined. Otherwise, there would be no Hydroxycobalamin for us to be injected with. Plus, us Brits do like to keep them as slaves.
I still support a charity out there because I was extremely fortunate to spend time in a hospital there. This occurred whilst working in a clinic out there. If you would not object, I shall pass your comment onto the Right Honourable David Lammy.
Cofactors is a multivitamin/mineral and I will not bore you with the details. Out of curiosity auldreekie, what colour am I ?
Hi Narwhal, The Cobalt issue is well made and as ever the superficial information is just that! I take all of your points onboard and will to delve deeper in future!!
I do take supplements but ...because digestive supplements alone are a £44 billion industry (might be dollars!! - that's animal and people) I try to research before adding to that figure when choosing any supplement!
Re colour - I am of the view it doesn't matter! But your moniker makes me think of Moby Dick but those whales are sperm wales -- Ishmael was Arabic probably? Nevertheless I was never good at cryptic stuff so please (if you feel inclined?? enlighten me!!
I don't know if anyone from Club-12 would talk or provide info. Might be worth trying?
Otherwise there's a GP called I think David Morris. Is or was Lake District based. Might be worth tracking him down? I saw a video presentation of his and he spoke more sense than almost anyone else I've heard.
Yep David Morris is wonderful. If only our GPs would listen!! My GP apologised if he sounded patronising about Club B12..he must have realised he did!! I may try them. Thanks much.xx
"I've sent him lots of info but he has read none of it "
How about putting the info and the queries you have into a letter to GP and maybe copied to practice manager as well.
Keep the letter short.
Letters to GP are supposed to be filed with your medical notes. There's no guarantee that GP will read it but it should guarantee that there is a written record of your concerns. Always keep copies. Paper trail can be useful if formal complaints are made.
Letters could contain some of the following
1) Test results with dates/ref range
2) Relevant brief family health history eg blood relatives with PA/B12 deficiency
3) Symptoms list
I used PAS list and added extra at bottom of page.
If GP remains reluctant to treat adequately, might be worth passing them info on SACD, sub acute combined degeneration of the spinal cord or maybe mention it in a letter. Might make them take more notice of you.
SACD is a possible consequence of severe B12 deficiency which requires prompt treatment with lots of B12. SACD can occur in people with normal range serum B12. search online for "Turner SACD functional b12 deficiency" to find a case study of patient with normal range serum B12 who developed SACD.
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