I was diagnosed with chronic b12 deficiency years ago - my GP started giving me injections every 3 months and my nurse told me that it was for life. I’ve always eaten meat my whole life - so my deficiency was not caused by diet. They have stated that my deficiency is due to malabsorption, but my intrinsic factor tests were negative (I’ve read that negative intrinsic factor tests doesn’t mean you don’t have pernicious anaemia). I was receiving these injections for 5 years every 3 months and then they suddenly said that I got “better” because my b12 levels were high. I checked the dates in which they took my blood test and it showed that they had requested my b12 with a full blood count 1 week after giving me the b12 injection (so of course my level was going to be high)..
For 1 year and half, I didn’t receive any B12 injections because I wanted to believe them that I was better. During that year, my neurological symptoms started again. I had to get injected privately. I also got double vision that happens everyday - I saw an ophthalmologist who stated that my muscles aren’t working well together, so I’m not sure if the lack of b12 injections during those years have now permanently affected my eye muscles.
Since then I got diagnosed with EDS and my specialist dr who diagnosed me asked my GP to give me my injections again whenever I’m symptomatic as EDS patients can have malabsorption issues. They are now asking me to call the GP every 3 months when I’m symptomatic - i should really just be booking the injection directly with my nurse as opposed to calling the dr every 3 months just to explain the same chronic issue again and again to just get a one off prescription each time. It should be placed on repeat prescription.
It makes me feel like they are invalidating my symptoms and I don’t understand why I went from receiving injections every 3 months for life for free over 5 years, to suddenly not receiving it at all. And now I have to discuss it with a dr every time I’m symptomatic and have to pay for my injections.
Can someone please give me any advice or share your experiences?
Do you or anyone else have EDS and chronic b12 deficiency?
Thank you
Written by
LaraPA
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Yes , you are right , a negative Intrinsic Factor Antibodies test does not indicate that you do not have Pernicious Anaemia. About 50% of of PA patients test negative. Many doctors do not acknowledge this. The antibodies involved come and go . Yes what is happening to you is happening all too frequently now. Doctors trying to avoid employing nurses . To save themselves money . You can plead with your doctor of course . But it’s so exhausting, especially if you don’t feel well .
In your position , I would self-inject B12 . It is so inexpensive, and saves you the caper that you now have to go through now. I had a positive IFAB test , and severe symptoms , but was only allowed one injection every three months. Too little , symptoms returned very quickly and I now have an irreversible symptom to contend with .No amount of pleading helped me . I now self inject weekly to keep well .
You could ask your doctor to kindly read the latest NICE guide lines , and hope that he/she takes note .
I’m sorry to hear that you are having to deal with an irreversible symptom - that’s the most frightening part of having this deficiency and I think a lot of drs think it’s “just a vitamin” and you can take “oral supplements” if your bloods are coming back in the normal range. Thank you for confirming the point about negative intrinsic factors as this was used also to deny treatment . I really appreciate the advice and for sharing the NICE guidelines too. I’ll share it with my dr in my next appointment.
Regarding self injection, I’ve thought about this and not sure how to get started. Is it something I can request for my nurse to teach me?
Sometimes ( but rarely ) doctors will instruct nurses to show patients how to self-inject . Mine certainly would not , and strongly disapproved of my self-injecting , In fact I was told that any more injections would be TOXIC ! Not allowed my NHS Injections now .
I got information on injecting from the internet . I will send you information about obtaining B12 injections to your private messaging , in case you should ever need it .
NHS only use I.M. B12 injections. But in Germany both I.M and sub-cut are advocated . Sub-cut are less intimidating than I.M. as the needle is very much shorter and thinner . Both methods work .
hi there I’m having similar issues could you possibly tell me if you source you b12 in the uk . If Germany I can get my sister in law who lives there to get them for me. Thank you
B12 ampoules are a prescription only item in U.K. . I get my b12 ampoules from excellent German online pharmacies . In U.K. we use Hydroxocobalamin b12 ampoules . Referred to as B12 depot on German online Pharmacy sites . It is actually cheaper to buy the ampoules from the online pharmacies in Germany than to buy from the High Street pharmacies. Online pharmacies give discounts , while high street ones charge retail price . Online don’t charge delivery if you buy over a certain sum , but only to a German address obviously.
Your sister in law can find the cheapest ampoules on a comparison site. Called
My daughter got an Ehlers Danlos syndrome snd POTS diagnosis shortly after a severe b12 deficiency was found with megobolastic anaemia in hosputsl when j blocked her discharge ax she was so ill. A definite link .
Affecting the autonomic function.
After many tests Brain and spine mri
Lumbarpuncture ,echocardiograms ,ect .
All before s simply b12 test !!!!
Fibromyalgia a wrong diagnosis as was hypochondria and mental health problems.
Doges your regular b12 I jrctions back before yoh get more things that may not be reversible .
The Pernicious Anaemia Society offer fact sheets for professionals.
That b12 blood test shoukd never have been done or used against yoh to stop vital treatment
I’m so sorry to hear about your daughter. A simple B12 test should’ve been the first thing they tested - they complain about costs but put us through all these unnecessary tests. This is so horrible - it is truly one of the most traumatic things.
I didn’t realise they don’t need to check my B12 levels - they kept checking my levels about twice or three times a year despite it being chronic..
Thank you for sharing your experience and for confirming that there is a link between EDS and B12. Wish you and your daughter all the best.
I have EDS and B12 deficiency, my PA antibody test was negative but it has a high failure rate. My excellent, now sadly retired GP stuck me on high dose tablets to see if they would work, my levels didnt move so she concluded it was likely PA.
I've also had historically low folate, ferritin and vitamin D, so I'm guessing its malabsorbtion at work. I still get NHS jabs, for now.
Hey, thanks for your response - yep, same with ferritin and vitamin D - always been low.
It’s always difficult when a good GP leaves or retires - you have to start from square one explaining all your conditions. Such a nightmare. Most GPs don’t even know enough about EDS.. and it seems they don’t know enough about PA either.
I’m glad you’re still getting the injections - hope they continue giving it to you.
Your GP is ignorant of b12 treatment and their blindness seems wilful. I would give them one letter detailing their error to see if they will change and if not learn to self inject.
Honestly, I’ve sent many emails, made many calls and no one is willing to listen because as long as your levels come back in the normal range then they assume you don’t need anything. They are not even following the NICE guidelines which they should be and there’s no consequences :/
Thank you for your advice - really appreciate it, all the best
Sleepybunny has posted a link to a Pernicious Anaemia Society blog by a scientist today; this explains various tests and pros and cons. It does also explain why a negative IFab test result cannot rule out PA.
PA has no cure - and measuring what has just been introduced is pointless and so not recommended by medical guidelines .
Thank you for sharing this - yes, unfortunately the Schillings test is no longer used. How does one prove that they need lifelong injections? Because these doctors just want to see results (if they don’t see anything, they won’t believe you).
I know there’s the homocysteine test and genetic testing and methylmalonic acid But apparently even those are not accurate :/
They should really just keep treating patients who showed initial low b12 and especially if they have neurological symptoms.
I was lucky - B12 deficiency was found, my GP realised that I was continuing to get worse after starting injections, had my MMA tested, the testing laboratory confirmed her suspicion that I had raised MMA and diagnosed functional B12 deficiency. She restarted B12 injections at a frequency of 2 per week after having spoken to consultants. I started to improve.
It took three years for my MMA to drop into range.
I now self inject twice a week. This allows me to manage my own symptoms most of the time.
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