This sounds totally out or order and clearly your GP and nurses urgently need some education. What ignorant pratts they seem to be. Their neglect in prescribing B12 will definitely be responsible for declining health etc
I'm not able to quote stuff but I think NICE guidelines state for treatment to continue treatment and NOT to test once B12 injections have begun as results will be high!
Someone else will be along with better facts and the source etc, plus lots of advice for you
You will need to fight your corner but there is lots of stuff out there to help you do this.
When your B12 is normal on treatment, it shows the treatment works. So you need to continue. Show your GP the bit in the guideline above that says delay in treatment can lead to permanent neurological damage - it's in point 4 of the summary.
This guideline also says that if intrinsic factor is positive, it is pernicious anaemia [PA], and patient needs lifelong treatment. If negative but no other causes of B12 deficiency demonstrated, one needs to assume it is still PA, and still needs lifelong treatment.
Thank you for this info. It seems I will have to fight for b12 every month. Even the nurse said, having a blood test was a waste of time as b12 will be in my system
That's appalling and they are wrong. If you need B12 then you need it. Without it you will suffer from deficiency symptoms and this will damage your body.
They are being negligent by not keeping themselves correctly informed and withholding the treatment you need.
Imagine if they did that with insulin to a diabetic!
I'm in Suffolk and was speaking to someone at the weekend who had moved up here from your area and their excellent Dr who had cared for them well had retired and "no one at the surgery had a clue any more".
Can you change practices? (But there's no guarantee you'll find a good one).
Please see the information on getting more jabs/jabs reinstated by Foggyme and Sleepybunny - I'll post links to them after this and you can see what they have suggested to others by double clicking on their names and looking under the heading "replies".
You must get your B12 jabs reinstated ASAP (or consider self injecting - it's much easier than it sounds and gives you your life back), especially as you are taking folic acid as this will mask the B12d symptoms and you might not notice damage starting from the B12 deficiency. If you go too long without jabs it is likely to cause additional problems with your thyroid alongside everything else.
Well done for being wary and finding out.
Good luck with getting it sorted out and come back to us if you need any further help.
I really like this misconceptions about b12 article. I would love to send it everywhere. Take a look. I think it could help because it talks about some of the erroneous conclusions that medical professionals come to and simply explains these misconceptions point by point.
I also find that repeating truths multiple times without changing my sentence in any way at all works well when getting a point across.
Ie. Don't get into a discussion. Just repeat the fact without emotion. Doctor picks it apart. No new discussion, just restate medical fact. I have made the most progress using that technique.
I have started self-injecting. And I don't even have some of the nonsense that others have had to endure.
I have been in to surgery this morning to pick up copy of my blood test results for folic acid. B12. Iron and White blood count. I requested this last week.
They have not printed them for me. I was in tears but got told to “phone tomorrow” to see if I’m allowed to have these.
I am already experiencing tingling in hands and feet and in my legs. I suffer badly with exhaustion and have done for years.
I had breast cancer in 2012. I had 2 hip replacements that didn’t work and was in hospital over Christmas with low white count due to gallstones. My gallbladder has since been removed.
My GP and pharmacy both won’t take me seriously when I voice my concerns and take in proof from thyroid website.
Perhaps the fact that I am nearly 70 and had cancer comes into it, do you think?
You are definitely entitled to have these - free - under the Data Protection Act. This has been in place for a few years now and there is something very wrong with your surgery if they do not know this. By now giving you a copy of your test results they are breaking the law. The only reason they can with hold them is if the results would cause you a problem e.g. it says you have a mental illness and it would freak you out - or something similar. They can withhold letting you have a copy until the doctor has seen them. You are entited to see them online. You just arrange this with your surgery. I have been looking at my results for a few years now. My husband has been looking at his and his showed cancer and he saw the result before the doctor contacted him.
1 Patients suspected of having pernicious anaemia should
be tested for IFAB. Patients found to be positive should
have lifelong therapy with cobalamin (Grade 1A).
2 Patients negative for IFAB, with no other causes of
deficiency, may still have pernicious anaemia and
should be treated as anti-IFAB-negative pernicious
anaemia. Lifelong therapy should be continued in the
presence of an objective clinical response (Grade 2A).
Send it to your GP with a covering letter asking why you are not being treated in accordance with the recommendations of the British Committee on Standards in Haematology and the British National Formulary. Tell them that you are worried that your continued lack of treatment will result in serious neurological damage.
If you google "guide to sensible use of gp open-access pathology " You should come up with a PDF chart from West Essex CCG setting out instructions for GP's regarding blood tests. If you look down the list to the B12 one you will see they tell doctors there is no point in testing after injections as it is likely to show too high etc. might be worth showing your doctors, especially as I think Braintree is in the West Essex area. Sorry I could not copy the link but it is a PDF and I do not know how to.
Thank you. I have looked at this and saved it ready to print.
I have had such a lovely response.
Went in surgery this morning for copy of my blood tests and they hadn’t printed them. Was told to phone again tomorrow and see if I’m allowed to have them.
I think I anwered the wrong message. Short answer yes you are allowed your test results under the Data Protection Act. It is law and if they do not let you have them they are breaking the law.
Especially as the MP for Braintree is James Cleverly - Chairman of the Conservative Party!! He might be a bit busy at the moment but I think he's trying to persuade everyone the NHS is good under his guidance - so you might get a better response than usual!
Truly shocking hestersimba . Your doctor’s ignorance is truly shocking . I’ve taken to self-injecting because I could only get one injection every 3months ( also had neurological symptoms) I hadn’t the strength to argue the toss with the doctors , so took to self-injecting . It’s easy and cheap . It’s something to consider if you have no luck with your surgery . Best wishes .
Your Dr needs retraining then. I was told that once diagnosed, you are on them for life. They may be in what they regard as "normal" range, but that is only because you are having regular jabs! If you do not have them, then it will drop. Do you have iron anaemia as well?
From my own experience, I had both PA and iron anaemia and so was on the jabs, supplements and for a while folic acid as well. But since the menopause, I am now back in the normal range and only have my B12 jabs now.
I have no thyroid function either, (born with only a partial non working gland) so have been on medication all my life. It was when they were messing me around with my thyroid medication, that I was diagnosed with B12/PA and vitamin D deficiency.
All of the above can run in families like ours. My dad was diagnosed late in life for the B12/PA anaemia and both my brother and late sister had B12 deficiency but only take and took supplements for it.
I would get a second opinion and at the earliest opportunity speak with your GP. I always say to the receptionist when she asks why, that is an ongoing condition and concern that I would like to speak to the Dr with as a matter of urgency! Normally does the trick. At the end of the day, they are not medically trained.
Having a clamp down on prescriptions is all well and good for things like antibiotics and dressings, but not ongoing medication that is needed on a day to day basis.
Thank you for replying. I was on iron tablets but came off in 2012 after nearly 30 years. I was on folic acid but was told to come off few years back. Blood test now shows I am low so am back on it.
Got very bad headache this morning and my feet, legs and hands and arms are tingling and I’m shaky.
Managed to get GP app this morning.
My grandad had it, my mum had it really bad. I’ve had it since 1969 and my daughter now has it and my sister diagnosed about 10 years ago. They told me it wasn’t hereditary?
You’re right about family. I suffer badly from ibs, so don’t go out much. had to have hysterectomy and gallbladder removed.
Just fed up of feeling so ill all the time. My energy level is zero.
No need for apologies and I can completely understand. I have had gyne problems for a while especially since the menopause. Recently found out that I have "aged related" diverticular and hernia during a CT scan for a the gyne problem. I was told though many moons ago, that I also had IBS and I find that if I am stressed or something does not agree with me, that I get a very bad stomach
As I understand it, people who have thyroid problems, do have soft tissue problems too especially with the gut and low stomach acid. Which can happen as many will know with B12 deficiency.
I sometimes feel it is like banging your head against a brick wall, because know one understands unless they have the conditions we have. I feel that I had lead weights on my body that zap me of my energy.
Continually justifying myself, which I have recently stopped doing, as I was finding people were either not listening or raised their eyebrows "With here we go again" crap.
I do feel for you my lovely and pleased be assured I am here whenever you want to have a rant, as I have a whole wardrobe of wearing the same t shirt lol. But is there anyway, you could go to another GP or practice? But whoever you see, don't say that your GP has stopped your meds, just play on how poorly you feel and hopefully they will do what should be done and restart the jabs.
In my practice we are given a year supply of jabs on prescription and everytime we are due a jab, we take it to the nurse to jab us with, is that what happens normally for you?
Take care and don't let the A/holes get you down, you will win in the end.
Thanks for such lovely reply. Just been to see a “trainee doctor” who recorded our appointment.
She agreed to my having a B12 injection so went back to nurse at 3pm and had one. My white cells are really low which concerns her and I got told to go back if my headaches and vision didn’t improve.
My mum had diverticulitis and I often wonder if that is my problem. I seem to follow her health problems with gut, gallbladder and hysterectomy.
My GP is a group practice so you never see the same doctor twice.
The nurse did say that B12 ranges from 94 into 1000 and a lot of people are having the injections without needing them, especially the teenagers on faddy diets.
I normally just book a week in advance (I have mine every 12 weeks) and surgery stores injections.
A lot of replies said to self medicate but I wouldn’t know where to get them in Essex.
I have turned down so many holidays etc with family over the years as well as meals out. I feel my life has passed me by.
Like you say, if you look ok, people assume you’re just lazy. But everything is such an effort. Hoover, sit down, dust, sit down and so it goes on.
Great news about the jab and fair play to the trainee dr - see you have won already! I am glad you have it. But at the end of the day, you have had it for so long for good reason, so it should continue. Long may it continue as well. You take care and hope every else will fall into place.
"My recent blood test shows that my B12 was “normal”"
BSH Cobalamin and Folate Guidelines indicates that retesting after treatment has started is irrelevant. Might be worth circling this bit of info on a copy and passing it on to GP.
"the receptionist wouldn’t let me as “you don’t need it”."
Did you ask receptionist who said you didn't need it?
I assume the GP must have put a note on the system. I did wonder if the receptionist has misunderstood something that GP said so I'd be interested to know what GP says directly to you.
There is a useful summary of B12 documents in the fifth pinned post on this forum which mentions the issue of retesting b12 after treatment has started. Pinned posts are to the top right of your screen if you're using a desktop computer.
"I am already experiencing tingling in hands and feet and in my legs."
"have been having B12 injections every 12 weeks."
You do not appear to have been treated according to recommended UK guidelines prior to your jabs being stopped.
1) UK recommended treatment for B12 deficiency without neuro symptoms is...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
I'm assuming you were put on the first treatment pattern. If neuro symptoms are present my understanding is that you should have been put on second treatment pattern.
Info on UK recommended treatment is in BNF, BSH and NICE CKS links in my other post.
Your GP can look this up in their BNF book Chapter 9 Section 1.2
Tingling is a neurological symptom and can be a sign of peripheral neuropathyPN.
Have you been referred to a neurologist?
Do you have any of the following ?
pins and needles, balance problems, memory problems, clumsiness, tinnitus, muscle twitches, restless legs syndrome RLS, word finding problems, dropping things, unusual gait (strange way of walking), migraine, insect crawling sensation, electric shock sensations, burning sensations, numbness, limb weakness, periodic limb movements, brainfog, confusion etc
Some parts of UK are using out of date local guidelines on treating B12 deficiency. Worth tracking down your local area guidelines and comparing them with national guidelines.
"Perhaps the fact that I am nearly 70..."
I think there is a lot of age prejudice and that too many things are put down to ageing when there may be a treatable condition causing symptoms.
The really cynical part of me wonders if older people are sometimes targeted for cost savings as they are considered less likely to challenge decisions.
Do you have someone who can go with you to any appointments that might be challenging eg supportive friend or family member?
My impression is that GPs and specialists are likely to be kinder if a witness is present.
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Under neurological symptoms, I forgot to ask if you have problems with proprioception ( awareness of body in space). Proprioception problems can be associated with B12 deficiency.
If you see a neurologist, ask them to check your proprioception sense.
Two tests that help to dot his are
1) Romberg test
2) Walking heel to toe with eyes closed
Vital that these tests are done by a doctor at medical premises due to risk of loss of balance. If neurologist does not do any tests with patient's eyes closed then unlikely that proprioception has been fully tested.
Videos of these tests available on Youtube plus other tests for proprioception.
I had some proprioception problems when at my worst. For example I would fall off the pavement if someone walked directly towards, causing me to lose sight of my surroundings.
My balance was also poor when my eyes were closed and when it was night time. I would also misjudge where things were when reaching for things, leading to broken crockery.
fbirder might be able to give a better example of proprioception problems than I can.
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B12 injections stopped by GP
B12 injections stopped by GP.
GP stopping my B12 injections. Replacing with oral B12
