Following my recent post re. contacting my doctor’s surgery about coming back in for injections (for free as usual) rather than self-injecting at home (for £9.15 (and rising) a pop), I’ve received a letter in the post from my GP...
She has used this opportunity to write to me informing me that she thinks I do not need injections and that the “risks outweigh the benefits”!
Her argument is that she has reviewed my files and that my b12 level at diagnosis was 173 when the normal range is 187-883, making me “just borderline”. She has also stated that my subsequent levels have been to the upper range of that scale or above (which they would be, as they insisted on blood tests after my injections were already in full swing for 2+ years!!!) The nhs website itself says blood tests after injections have been instated are useless as levels will show as really high!
She seems to have ignored the fact I was tested positive to intrinsic factor antibodies and therefore cannot absorb b12, ever again for life, hence pernicious anaemia... when I’ve questioned this before to her, she says it’s an old theory and not relevant anymore!!
She has also thrown up that she’s been doing some reading herself and that injections can lead to an increased risk of lung cancer... she has contacted a haematologist at the local hospital (who I've never been referred to myself) and has seemingly got him on side (no doubt not explaining my case properly) and has used him to back up that “there is no reason I can’t take oral b12.”
I’m honestly at my wits end... I was diagnosed at a different doctor’s surgery, so I think my first port of call is to contact the doctor who diagnosed me there? As she explained to me that very day that this condition is FOR LIFE.
I’m worried that the old GP won’t be able to help through perhaps no access to my files anymore? Although maybe they will accept me back on their books despite my new address falling just shy out of their remit re. local coverage.
My partner has come home to find me in tears, beaten down by this ongoing fight once again which is incredibly degrading... the amount of receptionists and nurses and even doctors who have all had their different opinions and comments re. regularity of injections has all taken it’s toll... anyone else in the same boat?! Having to explain why you need them that bit sooner than 12 weeks every single time is exhausting... now to be made out to be a hypochondriac is completely devastating.
Part of me thinks “fine they are the experts” and maybe I should just go with what they say... although I haven’t come this far to give up now. I’ve had a noticeable pattern of symptoms return when my injections were given initially every 12 weeks including having to have time off work from the severity of fatigue, pins and needles, brain fog, messing my words up and not being able to string a sentence together... one of the big clinchers was almost crashing my car straight into a wall no less than half a mile from the surgery on my way to get the injection at 12 weeks as my body was so overdue! I remember back then sitting in the surgery waiting room with tears in my eyes awaiting the injection that I know would return me to some kind of normal within days of it... is this all in my head like they are making out.........
Help is greatly appreciated! Has anyone had to deal with anything like this? I will have to contact the society for advice too! I can see why so many people think “fudge it” and inject themselves with b12 bought online although I’ve always been a stickler for the rules and listening to the professionals... until this grossly misunderstood condition was diagnosed at least.
Thank you in advance x
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amydemi
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We keep hearing of more and more cases like yours . It is absolutely outrageous of course, and not true . You have Pernicious Anaemia,with proof in the shape of an Intrinsic Factor antibody test ,and must have injections FOR LIFE AND . It’s an absolute fabrication to state that B12 injections can cause lung cancer . YOU CANNOT OVERDOSE ON B12 INJECTIONS — Those people are not experts , they are dangerous people who should not be practising medicine . You must get your injections reinstated . Some fellow members will post you soon , with all the references you need to quote in the letter you must write to your GP and the surgery manager .
Many members are forced to self-inject when they are unable to get injections as often as they need . I self -inject weekly , and no longer go to the surgery . Best wishes .
Your idiot doctor needs to learn which goes first, the horse or the cart.
High levels of B12 are, indeed, associated with many cancers. But sensible scientists do not immediately blame B12 for the cancer. They blame the cancer for the B12.
Conclusions: Elevated plasma B12 levels were associated with a higher 1-year cancer risk than normal B12 levels among persons seen in UK primary care, suggesting that some cancers may affect B12 metabolism.
Hi, I just wanted to share with you that I have experienced a very similar situation from my GP surgery. The constant battle for more regular injections did eventually wear me down to the point that I took the decision to self inject.
I feel it is disgusting that people, such a ourselves, are made to feel this way, when I do see the surgery for my 'prescribed' b12, the nurses constantly question the frequency and pass judgement.
I totally sympathise with your situation and just wanted you to know how great it feels to be back in control. I haven't told my GP I'm self injecting, but I don't have that constant dread of them withdrawing my injections. I find I'm injecting weekly and this works for me.
This is a disgusting way to treat people. What logical choices are left you ?
Patients are likely to either be pushed into self injecting, or paying an extortionate amount of money for private injections or else ignoring their own symptoms until they have deteriorated to an indisputable state. Which then might run the risk of getting misdiagnosed as almost anything else: MS, fibromyalgia, IBS, depression, ME, CFS, Coeliac disease or a thyroid condition etc etc etc.
Intrinsic Factor antibody test is not considered a "theory" at all.
You can see this for yourself by countless posts on here from people who have tested negative - and had injections refused on this basis ! Martyn Hooper, the founder of the Pernicious Anaemia Society, had three tests himself before getting a positive result. He was given an MBE to recognise his work on behalf of all those with PA and B12 deficiency - and yet, had he been unlucky enough to have your GP, might now have found himself refused injections because his diagnosis was based on an outdated "theory" !
Why B12 deficiency, whatever the cause, is so disregarded I have no idea. The costs to a practice might be a factor. The costs to a patient, however, can be enormous:
I can no longer drive because I haven't the ability to concentrate for long periods.
I can no longer read a book because I can't concentrate or remember.
Perhaps these are choices: I choose to reserve my compromised mental capacity for greater priorities.
I was off sick for 4 terms, went back on a phased return, never in over 2 years got further than 2 days a week- and have now taken voluntary redundancy.
This felt less like a choice -and more of a relief. Perhaps I just needed to be given permission to give up.
Yet I've been lucky - I could have been a lot worse.
I have a supportive GP who recognised and treated B12 deficiency at 196 ng/L (range started at 197 ng/L). When I was deteriorating on the 3 monthly injection regime, she had my MMA tested- it was raised. She diagnosed functional B12 deficiency which was confirmed by the lab - all other causes for raised MMA having been eliminated. MMA remained raised - until for the first time in three years last year, it was comfortably within range at my 6th test.
The only treatment I had was frequent B12 injections, firstly from the surgery and later self administered. I would never have got to this stage without my GP and all the support from this forum.
Don't give up. Get all the help you can to fight this: your partner, your family, your previous GP, the Pernicious Anaemia Society.
Your GP is wrong and cowardly. Find a better one.
As for finding a haematologist to agree with her, this unfortunately is not a surprise:
I was told by haematologists that B12 was "toxic, carcinogenic and highly addictive" - I asked for proof three times and got none. My cognitive and memory issues were put down to being an ex-smoker- starving my own brain of oxygen. Really.
I'd laugh right now if I could, but I'm too angry.
My husband says you have Neurological symptoms and your doctor is failing in their duty of care by failing to treat your symptoms properly as specified in the guidelines referred to above. In a Swiss study (Metaxas at al. Swiss Med Weekly 2017; 147; w14421) a randomised parallel-group trial of oral against IM B12 injections had to be abandoned because the differences between the two groups was greater than expected. The noninferiority of oral treatment had to be rejected. It is unethical to remove treatment that has been working and substitute an inferior treatment that is clinically ineffective in giving symptom relief in 53 to 80% of even an undefined population of B12 deficiency patients (I.e. could include dietary deficient patients). Your condition is more serious and this doctor is simply being tasked with trying to remove as many patients as possible off injections for misguided and unjustified cost reasons. The borderline serum B12 level comment is so misleading and misinformed. The modern laboratory method is so poor that it detects only 3 out of 10 sufferers ( Willemina Rietsema GP). There is a huge overlap between the levels recorded in patients and the normal range. This is NOT a gold standard test. Your GP badly needs to widen their reading. Take the advice above , contact the PA Society and use one of the letter templates to complain. Some of the GP practices are backing down in the face of reasoned and firm written complaints. Good luck.
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