considering the nhs took ages to diagnose me and ignored many of my horrendous symptoms, and probably labelled me as an attentions seeker. You would think they would be bending over backwards to help! went for my b12 jab. the hca said this is your last injection! I said no it wasn't and asked if they had the letter from the consultant come back yet. she didn't know. they have taken bloods. I asked for thyroid test but I notice it was for b12 too. I am feeling let down, worried, a little helpless and feeling like I am banging my head against a brick wall. I was told by the GP that the injections would continue until she had received the letter back from the consultant who diagnosed me. no idea how long that takes. I have asked for all my medical notes from the hospital and also letters from the original diagnoses from the surgery but as I have just moved they have only just got all my notes. just fed up with having to fight for a cheap treatment. I am going to self inject, there seems no choice really. do you think this is the surgeries plan? stop the injections they will go private? the nhs is a monopoly.
The NHS is a monopoly.: considering the... - Pernicious Anaemi...
The NHS is a monopoly.
If you self inject, the only thing you need from the GP is your normal medical care like an annual check up and the B12 prescription. Ask for a year’s worth of weekly (or monthly) injections, even if you then go private.
Make sure you keep a logbook of all your food, drink, meds and symptoms. Give a printed copy to the GP at each visit. Ask for it to be included in your records.
I’ll let others discuss medical records.
Thanks but my GP is not going to give me anymore prescriptions for b12. The surgery has told them to put anyone without IFA on oral b12. I have b12 from a German pharmacy and intent to self inject as and when I need it. I seem to have no choice. It is not as if there isn't loads of research out there that the GPs could update themselves on. Just crap, excuse my language.
I agree. My gp dismissed my b12 problem totally and said it was all down to my type 2 diabetes. Concidering I was told four years ago I was no longer diabetic and since my hc1b test have come back at between 34 and 41.
Its a conspiracy.
I'd agree about the conspiracy if I could believe that they would ever be able to get a plan together but I'm afraid it's much more likely to just be a result of random apathy or plain bungling incompetence!
You need communication and coordination for a conspiracy and I've never seen either in the NHS!
Lots of extremely good, very caring and hard working individuals that each alone make enough of a difference to enough people to keep the thing going but they are too busy caring for patients to plot.
The others don't even have the nonse to do their jobs so couldn't plot if they wanted to!
That doesn't help the poor souls who need care and aren't able to get one of the brilliant staff members.
They, like you, have a case for negligence.
I would go with apathy and incompetence..Everyone is so busy covering their butt that the patient is lost in the mix
Write to your GP. Include a copy of this - onlinelibrary.wiley.com/doi... With this paragraph on p. 500 highlighted:
The finding of a
low total serum cobalamin level may be further evaluated by testing for anti-IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh et al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA)
And this bit from the initial summary:
In the presence of discordance between the test result and
strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.
Say that you want your treatment for the prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency (as described in the BNF) to be reinstated immediately because you are worried about subacute combined degeneration of the spinal cord without the treatment.
The ref you sent me, guidelines for the diagnosis...…..was completed with my local hospital Royal Devon and Exeter. Maybe this will help my cause? thanks
I would just get it sorted at the surgery. It happened to me . Sometimes it's a question of the failing administration
The computer systems are too heavily relied upon. I had to produce a letter from a neurologist. All too stressful and not needed. Hope the self injecting goes okay. I would also try and stay in the system and have all you take on your notes. That should be accurate. List of past and present treatments.
Self injecting is fine - nowhere near as bad as the thought of it. It's easy and gives you your life back.
You will probably feel liberated from getting control back and for me it is cheaper to buy my ampoules in bulk online and get them delivered, than it was to keep running to the surgery for the script and then the pharmacy for the ampoules.
The NHS is a holy cow and a monopoly, but that isn’t the reason why you’re receiving such poor treatment, though it may be a contributory, systemic factor.
The system still demands grown adults be treated like children and to be compliant in what should be a two way, equal relationship between us and clinicians. It gets my goat. From here stems our frustration and poor treatment. I know some here have great relationships with their GPs, one where trust exists and the GP is respectful of your intelligence and our own relationships with our bodies, but in my experience, that is the exception rather than the rule. I knew something was wrong with my body chemistry years before I was diagnosed with B12 deficiency and then hyperthyroidism.
Good luck, but keep on fighting!
How can I find out if I have Pernicious Anaemia?
Update on high b12
Confused after visit to GP
