That is a shocking tale Nackapan . How many more hoops do you have to jump through ? I don’t have your tenacity . I’ve given up and just get my ampoules from Germany . Yes cowardly I know . But I haven’t got the mental strength .
Oh it is important that those of us who need regular B12 injections keep on and on until they get what their body so desperately needs. It took me a couple of years but now I am on a 10 day programme which keeps me really well and happy. So, hang in there everyone who needs B12.
dear Nackapan I am dismayed how awful for you both.
Yet again, I do not understand why or what is going on. Repeatedly. Nonsensical. Why bother with gps when non clinical staff rule. Sending love and best wishes 🥰
I am sorry to hear this has taken place yet again.
You shouldn't have to endure the stress of this. As for seeing a haematologist mine admitted she knew nothing about PA or a B12 deficiency and asked the pharmacist to ring me ! A ruddy pharmacist ? She is a top lead London Haematologist. 😡
Keep socking the info to them, you never know somebody might read and take on board what is being said. 🤔
I'm a veteran, in the US, and in a VA hospital several years ago, a neurologist requested an e-consult with hematology, asking about whether I could have PA. The e consult was answered by a physician assistant, who advised to remove me from B12 shots (which I was getting myself with no help from them) and to test my blood count for anemia every so many months, I don't remember anymore the amount of months, it was at least 3 or 4, maybe 6, and see if I become anemic. I continued my shots and did not do this, and I disenrolled from the VA. It made me crazy, and not worth this denial of everything that might help me.
Its dreadful , I sometimes feel the more you try to get them to understand ,the harder they fight against looking into PA and what most of us go through its exhausting for us and a waste of time and money as you say Nackapan. Some days I just want to scream!!!!!!!!!!!
Integrated care boards (ICBs) replaced clinical commissioning groups (CCGs) in the NHS in England from 1 July 2022. Looks like they are co-ordinating this. Not driven by Wes Streeting I can assure you. Its appalling yet again. Makes no difference to me as I buy from a German pharmacy and inject myself.
Hi, this happened to me during Covid! My B12 prescription was suddenly stopped. Was asked to take a blood test, then I was told I didn’t need 3 monthly injections anymore. I was previously diagnosed by a Neurologist and had been on B12 for 13 years. I tried going for 3 months with it and felt awful. Wrote to my GP asking him to reconsider but it was useless. So I have paid privately since 2020. The Neurologist I saw has now retired so I was unable to get his help.
I'm just commencing this journey and had a partner GP appointment last Thursday after being told by a locum before Xmas that I don't have a B12 issue. I started SI 22/12 in desperation after that appt. Partner GP was initially cool towards me as I had had a meeting with GP management the day before to inform them about the dreadful locum appt and tell them I now SI and she had been briefed. She spent a lot of the time with her head in her hands. Their policy is not to follow NICE guidelines; they only prescribe and administer B12 for a definite PA diagnosis/B12 deficiency. I don't fall into that category at the moment although my B12 reduced by 50% is 12 months and 2 consultants have recommended b12 injections. Even if I did, they only offer 6 loading doses in 2 weeks then 1 injection per 3 months. They do not have the staff or the rooms to give B12 injections to everyone who requests them. Since the NICE guidelines were published in March 24, they have had a huge increase in B12 patients. I asked for support to self inject - they will not prescribe B12 to me as they have a legal duty to ensure that I what I take is necessary. She asked if I will continue to source B12 from Germany and SI - I said yes as many of the debilitating symptoms are now starting to resolve. When I described how I had been, I got upset which my friend (who came with me) said changed her attitude to me. I am now going to get a head MRI to check brain. Plus a blood test for IFAB. Although she knew it is 50-70% accurate. She knew no point retesting B12. She will for A&G from gastroenterologist as she is unable to order any further tests for SIBO or parietal cell AB. It was a very long appointment!!
It is awful and I hope you find a way through. It's good to know that you arrange your own supplies. My friends can hardly believe what I tell them. It feels beyond belief. I've just read Dr Chandry's book on b12. He reckons the reasons for a medical culture of minimising and side-lining B12 deficiency is possibly threefold. Nationalistic pride in refusing to acknowledge vitamin deficiencies, medical careers which reward 'new' diagnosis and treatments, and B12 doesn't make any money.
Ridiculous that your GP has to educate herself about B12 in order to protect you from admin !
But ridiculous that your GP has to educate herself about B12 anyway - that should be part of medical training for GPs and nurses (and now, it seems, also receptionists, pharmacists and administration !)
Everything once known or understood seems to have been wiped out, with no reason : no research, no "medical breakthroughs". Nothing.
If this is just a costcutting exercise on a targeted vulnerable group having to fight a new system as individuals, then it's already proving to be false economy when consultants advice on regime frequency can become outdated so quickly.
Wonder how they can reduce their patient backlog when admin keep adding to their workload ?
It seems they should have a medical responsibility to treat symptoms, and to prevent any further harm. If that is presently NOT their policy to do so, then the only thing that might change their policy, which is presently one of negligence, since clinical symptoms should be the main factor in treating, and since testing is not always definitive, is for many people who have been harmed by this negligence to bring lawsuits against them. It seems like only that will end the uncaring and nonsensical gross negligence of leaving people with signs of nerve damage without any effective help, further damaging them.
I'm so sorry to hear this Nackapan. I admire your strength and continued fight to be heard and seen though.
I've also had my b12 injections stopped, due to my last blood test being higher than normal. Apparently they are going to review me in 6 mths to see if it has changed 🤷 My mum is also b12 deficient but unfortunately her diagnosis was discovered too late 😕
It wouldn't have been discovered at all if I hadn't told my mum to ask for her b12 level to be checked in the first place, due to her symptoms that she had been suffering for years! and also my diagnosis being the likelihood of it being hereditary.
Unfortunately like your daughter she now suffers from irreversible damage.
I'm so sorry to hear about your daughter Nackapan that's terrible 😔
My mum is currently still recieving her b12 injections, she's only just had her second dose, but I don't think they will make much difference now as the damage has already been done 😕
I hope you manage to get the answers you deserve and please keep up your strong fight 👊
Hi Nackapan so sorry to hear this again your poor head must be aching with this c..p. I can’t add anything useful other than keep your chin up and don’t get too stressed it’s not worth it. My gp surgery is quite proud that it’s now 100% triage. I feel so sorry for really elderly people who have no knowledge of smart phones or ability to do these online requests,their only answer to this is tell them to ask a family member but many of our elderly in this village don’t have family members or if they do they live far away and rarely visit. Horrible society we live in now. No wonder we s.i and rarely go near them..best wishes to you and the family. Xx
The doctors should know not to only trust your numbers when you are already SI! They will ALWAYS be higher than what it really is because your blood is full of it! Numbers may be a guideline but symptoms are a more important indicator. The sad truth is that there's nowhere near the money for them to make giving you a vitamin supplement as there is by testing you nonstop and giving you massive quantities of pharmaceuticals! Most simply don't know either because they are not taught much about it. At least, this is true in the US. I am not a Healthcare professional; but I know MY health and what I need better than someone who simply regurgitates what they read in some study that was done while in school! I did the doctors too...I took the B12 they gave me; and then found my own. I hope you are able to do the same. Good luck!
I am sorry to hear that you’re having to go through this yet again Nackapan I do hope it is resolved soon.
I know that we also have our own supplies but like yourself I think it’s important to continue to battle with the medical system if we can.
I lost my mum a few months ago, she had severe dementia and wouldn’t have been able to fight her own corner. I don’t want to ever be in that position so I’ll keep fighting the battle whenever it’s questioned as well. I don’t know for sure but I don’t think she had a b12 deficiency, her result was a lot higher than dads when I asked their GP to test when I took them to their surgery for their annual health checks.
Dad died 18 months before mum and he was b12 deficient when I requested his b12 to be tested. The GP wouldn’t treat him saying ‘if I gave b12 to every elderly person who was slightly deficient I’d have to treat almost all of them’.
Probably many of the elderly would be in better health if they were tested and treated so the NHS would be saving money.
Dad had many other health problems and complications caused by being type 1 diabetic since he was young. He probably didn’t have PA but possibly his health may have been better if his deficiency had been found and treated.
I often think the same about insulin injections. My parents were both in their 90’s, dad reached the age of 95, I remember mum sterilising dad’s equipment for injecting his insulin when I was a child, He was taught to inject himself from the beginning, it doesn’t make sense that we aren’t allowed do the same.
I had to give my husband a course of injections into his tummy when he came out of hospital after an operation. I wasn’t given any training on how to do this at all!
Yes I’ve just got home from hospital after having a spinal nerve root block and reading through my copy of a letter being sent to my GP regarding this, I noticed that it lists among my current medications an antidepressant for fibromyalgia that I stopped taking about 3 years ago.
In fact I will write to our Prime Minister AND leader of the opposition - they want to save money and care for those who don’t have too much money - we’ll this is a win win for everyone!
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