It really is disgraceful. Perhaps it needs someone to sue a gp for causing harm by withholding treatment. Maybe then they might all Wake up.
Can you get them to watch the film on b12info.com/films about the paediatrician who still has to use crutches because neither he nor his colleagues recognised b12 deficiency symptoms. He was close to death.
Also the guidelines still state every other day until neurological symptoms stop improving then tapering slowly until 2 monthy. Surely if symptoms reappear when injection gap is increased then you go back to the frequencythat was ok. My mum says I have no common sense but that seems obvious & logical to me.
Why on earth do they think we need a useless statin daily but a vital amine we somehow only need 3 monthly. Clearly we need to wipe out their ability to absorb b12 & then see how they would like it to only feel well for a few days every 3 months.
I do hope both you & your daughter can get this sorted. I know we can & do import from Germany BUT we shouldn't have too.
I despair on your behalf Nackapan . What has become of our NHS? I admire how you stand up to the gross injustices that are heaped upon you .
I’m experiencing a difficult situation. I have osteo-arthritis of the knee . Have submitted to an assessment to get on the waiting list for an op.
The subsequent report told lies, stating that i could stand on one leg and do squats so therefore would not qualify to go on the waiting list —complete fabrication.! Unfortunately I did not have a witness with me who could have denied this lie .
Then I hear other horror stories like yours on the forum . I feel that I’m living in an alien country .
I want to march ( would be miraculous!!) against all these iniquities!
I’m not much comfort or use you . I hope that you have the strength to keep up your battle . Battling is so difficult when you don’t feel well
hello Nackapan I feel despondent just reading this, you must be too and exhausted . The lack of medical personnel knowledge is literally life threatening. I can only wish that you wii be successful eventually. X
Relieved that your GP "has been intrigued and done lots of reading". There is nothing worth reading out there that will argue against you.
Appalled that you have again been put through the worry of all this because of others' complete ignorance of what B12 deficiency actually feels like when you have to live it out. Look it up, people !
(I'm choosing "ignorance" as the cause, not "lack of ability to give a stuff" because I still think this is the case. )
Yes, I agree that the response from haematology is generic but positive. How can it be more personal, since they have never met you ? What a waste of time and money it is for all of these consultants to have to keep renewing their colleagues' statements. This really now ought to be accepted by your surgery as the final time you are made to defend your need for B12. Let us hope they have also learnt something valuable, to better help future patients regain some quality of life. And then that a positive decision by the group also can be used by your daughter to reinstate her treatment, given that a family history has been cited here.
If primary care had been as concerned about the effects of having too little B12 as they now appear to be about having "too much" B12, you may not have needed so much of it in the first place !
What do GPs (or consultants for that matter) believe are symptoms of B12 deficiency ? How do they decide when to test for B12 deficiency ?
Would they test anyone who complained of "tiredness", for instance, or would they likely blame the menopause, if the age and sex of the patient made it seem appropriate ? Offering antidepressants over and over ? Seems the standard response.
Given that the typical B12 deficient patient (apparently) is a woman of about 60, why not test before trying to convince us all that we are depressed ?
Our lists are all different, it's true. But there are some pointers, visible ones, for those who are looking. No need for much searching if someone can't walk straight - not if you took the time to go to the waiting room and watched your patient walk towards you. Shaking hands. Hair loss. Angular cheilitis. Yellow-grey skin. No-one ever looked at my nails until I was referred to a haematologist.
There was a time when I was too confused to write dates in my diary at the surgery reception - unable to book in my two injections a week without my partner taking over. I really needed help, I really needed those injections. By then, it was probably obvious to everyone in the queue behind me. In the same way that all the people in the supermarket checkout queue could hardly fail to notice my loud air-gulping that signified an exhausted customer suffering from lack of oxygen. Some even laughed. I just laughed back (between gulps).
What else can you do ?
So if all those people can recognise something odd about me, then it's a shame if a group of 10 surgeries do not recognise that you are indeed still living with the damage.
More aware GPs will know when a treatment is working, but may get not only peer pressure but dictated to by the surgery prescription manager. Yet only those who have seen us ill have seen what stopping those injections will put us through. The others haven't got a clue. This is why continuity is so important, individual treatment frequencies vital - and why so many of us end up self injecting.
Re-education about symptoms is necessary at both primary and secondary care. They have lost the knowledge and now don't know what to look for. It's damaging.
Health checks seem to be weight, measurements and BMI, then mainly asking about your drinking and smoking habits, how much exercise you do......what you need to blame yourself for, and what you can still do about past misdemeanours...... no time to talk about falls though :
My mum fell.
She said she'd tripped, running for the bus. She broke her jaw, her teeth went through her bottom lip. In an awful state - but no scraped palms to indicate she'd even tried to break her fall. She went to A&E.
Then she fell again, and again at a bus-stop.
"Slipped on some wet leaves" she said, and was sick on the pavement, propped against a garden wall . An ambulance was called immediately, but she was (she told the paramedics) okay -and didn't go to A&E. Probably very embarrassed !
Oddly no-one thought to find out why she was falling.
Later, it became very clear that her heart was struggling. It then made dreadful sense; she'd been blacking out during physical exertion. A heart attack is not always the first signal given of a heart irregularity.
She never drank or smoked - and was never overweight.
Instead of the uniformity of tickboxes, you are right: an opportunity to discover what is "normality" for the particular individual, update information for files, discover what health concerns the patient has (perhaps due to family medical history) and routine tests for any changes, based on the patient's own previous results. Baselines. Direction of travel. Prevention.
B12 absolutely should be part of any 50+ wellness check. Also being able to choose a GP that you feel you can trust and then being allowed to ask for an appointment with that GP. There is no time allocated in your 8 minutes to go through your problems, tests. symptoms etc all over again with a new one. Especially when it's been going on for years. Especially if struggling with confusion, memory loss, cognitive difficulties and not able to do the word-search or find the appropriate highlighted research paper. Particularly if the appointed GP hasn't a clue that any of the above are B12 deficiency symptoms !
It’s just awful for you to be put through this time and again. If your gp has sought the advice of all these consultants why not just listen to them and reinstate your injections now?
The few doctors who do fully understand b12 deficiency are letting us all down by not pushing for an educational programme to make sure the whole profession is aware of the issue. For it to be left to patients to try and explain it to their doctor is frankly ridiculous.
I do hope they see sense and stop meddling with your treatment.
oh Nackapan, I’m so sorry this is still going on for you and your daughter. It’s stressful and infuriating that you are having to fight for your own care and health.
I really hope the PAS and B12 groups are able to get some traction on global standards for both B12 levels and treatment. And that your NHS don’t just ignore them when they do!
Given the sole purpose was to discover whether anyone in secondary care would give them the go-ahead to continue with treatment that has been effective (albeit very gradual progress made) and long-term now, the answer given from both neurology and haematology has been "Yes", I cannot see the concern with continuing.
If I was a GP, I would be much more concerned about being the one that decides, against all advice, to discontinue.
I have been reading the latest research paper from Dominic Harrington, thanks to Sleepybunny 's latest post re PAS with links to research papers listed on their website.
Interesting, but ultimately disappointing.
Interesting:
"....macrocytosis is a non-specific pathological indicator of advanced B12 deficiency..." (ref: J Lindenbaum)
"Patients should have their B12 status evaluated if they have at least one risk factor for deficiency and at least one symptom" [one symptom ???]
"Delays in diagnosis and treatment of B12 deficiency have a negative impact on quality of life and increase the likelihood of permanent neurologic damage." (ref : NICE)
" .....the clinical decision point for deficiency commonly set in the region of 200 ng/L (148 pmol/L)" (ref: V Devalia) " This approach is partly informed by a study in which it was estimated that 90-95% of patients with B12 deficiency had concentrations 300ng/L (>221 pmol/L)" (ref: J Lindenbaum)
"NICE NG239 suggests an indeterminate range of 180 to 350 ng/L (133 to 258 pmol/L)" ........"Second-line testing should be considered for serum B12 results that fall within the indeterminate range."
Re. holoTC (active B12): "As an alternative to a single clinical decision point, results in the range of 25 to 70 pmol/L may be considered as indeterminate, and second-line testing should be considered to clarify B12 status" (with 70 being sufficient)
"The best described biomarkers that are considered suitable for second-line testing of B12 status are MMA and Hcy "
"A large decrease in MMA concentration after treatment with B12 is considered confirmatory of a previously B12-deficient state. An MMA concentration of >750 nmol/L is accepted as indicative of "definite" B12 deficiency." (ref: R Obeid) "Unlike Hcy, MMA concentrations are not influenced by folate, vitamin B6 or vitamin B2 status."
"Blood samples for diagnostic tests should be collected before starting B12 replacement. B12 replacement treatment should not, however, be delayed while waiting for the test results of people with megaloblastic anaemia or subacute combined degeneration of the spinal cord." [Well, quite, but delays while waiting for a spine MRI ??? ]
"B12 replacement should not be delayed if the total B12 result is indeterminate and the patient has a condition or symptom that may deteriorate rapidly and have a major effect on quality of life (eg neurological or haematological conditions like ataxia or anaemia), ...."
" Establishing the cause of deficiency is important, as in some cases the cause will be found to be reversible and indicate short term treatment is required. In other cases, the cause will be found to be irreversible, leading to obligatory lifelong replacement."
But here is where we are let down, right at the finish:
"B12 deficiency is most commonly corrected with oral or intramuscular doses of the vitamin."
Yes, this is followed by "No toxicity is associated with the treatment" - but the damage has already been done within the previous sentence.
I have written these quotes out in case any are useful to you, your daughter and others here. "The Application and Interpretation of laboratory Biomarkers for the Evaluation of Vitamin B12 Status" [Dominic Harrington et al., pub. 4th oct 2024]
Where warnings against the delay of B12 deficiency "diagnosis" or "treatment" are made, it could be argued that the same warnings should now apply to having treatment stopped - as this becomes just the latest threat to health for B12 deficient patients.
Shame oral B12 was not mentioned as maybe possible but rarely is .
Or b12 tablets work for dietary
Loading doses were continued by thd District nurse team as virtually bedbound on discharge from hosputal when a severe b12 deficiency finally diagnosed along with megobolastic anaemia. Low folate .
Ferritin and vit D .
Loading doses fof all of it .
Told Injections for life .
She was too ill to retain any information.
I remember and recorded everything.
So must be on notes somewhere if the G.p looks further.
Found dates and details from my copious record keeping of events at the time. .to help if needed.
Megobolastic Anaemia
Letter not in as planned as shes unable to do it.
Alarm bells.
Waiting for consult with G.p.
She's trying to get a rappor with .
Not having bloods done presently.
B12 appt. Cancelled by nurse who queried hef b12 10 weekly.
Her cut off is 12 weeks .???
Then it's DI Y
Whilst sorting / fighting .
Her case is clearer than mine.
10 weekly in their guidelines.
Gastro advice not recieved yet 10 weeks !!
G.p should be prescribing B12 whilst waiting for this advice .
Brings back bad memories and fears .
Noone wants or needs to rake over where we've been in illness.
I was thinking that this being very recently published and from a well-known local medical expert might be helpful. Disheartening about no clarity concerning where there might be oral effectivity and where injecting the only/better/preferred option.
Still, there is some hope: "no toxicity" appears to be a blanket statement, covering both options. I can't see how fear of overdose could apply to 5 injections a year as opposed to 4 though. Or cost. Or surgery time.
This is a uniquely specific case and so should have been approached as such - no danger of any floodgates being forced open here !
So, then, ...... why ? Incomprehensible and, yes, cruel.
So what happens when one comes to the point that they can no longer effectively advocate for themself and fight back like you have? It almost seems to me that the only assurance of safety in the future would be that anyone with this condition should move to Europe or Canada, if they could in any way accomplish this, and were in good enough position physically and financially to do this, where they would never have to deal with this life threatening nonsense of cutback or cutoff threats. Or, in the meantime, bring lawsuits for these, even threats, of cutoff. When will their next review be to remove you again from the current regime they decide upon today? Shouldn't there be more efforts and more movement on our behalf to ensure that this becomes over the counter in both UK and US? I'm tired, and the future seems deadly for those who would not have your tenacity.
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Heart disease and Pernicious Anemia
