So I had my latest b12 injection yesterday. I just received a text from the doctor saying that "I no longer need B12 injections and can have oral supplements from October". I don't understand this as initially when I was first diagnosed I was given oral supplements to try for 2 months initially. My serum B12 level actually went down after this period, so I would think that indicates an absorbtion issue? Why would oral supplements suddenly start working now, can anyone explain? I had a feeling this was going to happen as she mentioned it ages ago. I know this isn't uncommon from what I've read on here i just don't understand the doctors logic, I think it's because I had a negative intrinsic factor test ages ago, can absorbtion issues still be a problem even if I don't have PA? I eat loads of meat, cheese etc so there's no way my diet doesn't have enough B12. Why are they so keen to stop injections? Is it a cost issue? I don't understand.
I rang the hospital regarding my neurovascular appointment yesterday as it was overdue and the NHS app said to ring. Apparently it's a 50 week wait, so obviously nothing is going to happen there for a while. I think she thinks my neurological symptoms are down to something else, but surely if they are B12 related, stopping injections means they could get worse over the 50 weeks.
I'm waiting for the b12 vials to arrive from Germany. I was a bit sceptical originally but it seems you do have to take things in to your own hands. It's all very odd, I can only assume cost is the main reason they want to stop injections so readily.
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The cost is not in the actual injection material. The NHS pays for that …It’s in the nurse that has to be employed to give the injection . The surgery wants to employ as few nurses as possible as the cost comes as an added expense to the surgery . . ………….If you eat plenty of B12 - containing food , and your b12 serum is low, you have an absorption problem . If your symptoms return when you take tablets , you must ask for B12 injections to be reinstated.asap . Long term insufficiently untreated B12 deficiency can lead to irreversible symptoms ( I know , it happened to me )
If you get nowhere with that , consider self - injecting like we all do on here .If you ever want information on it come back here . Self injection is simple and cheap .
Always remember , the medical profession in general has poor understanding of B12 deficiency/Pernicious Anaemia. About 50% of P.A, patients test negative to the Intrinsic Factor Antibodies test . The antibodies don’t always appear . Your doctor should know about it
I’m sorry your doctor hasn’t been helpful in treating you.
Malabsorption can definitely happen even without PA (but the PA tests suck). The treatment remains the same for all B12 malabsorption deficiency - B12 injections at a frequency that keeps symptoms at bay. The doctors will try to say 3 months apart but that doesn’t work for most of us.
That does not make much sense to me. Why did they start B12 to begin with? How often did you have injections? What made them conclude you do not need them anymore? If you have PA, then you need injections for life. Some people get by with daily 1000mcg sublingual supplements. Since your levels went down when you supplemented, it sounds like you are not one of them. It would be good to find your maintenance dose. I get symptoms back after 3 weeks so I get injections once per week. Once you get your B12, you can experiment with that. Very best wishes.
honestly, it’s one of the biggest scandals in living memory. I hope it all comes to light one day. Glad you’ve ordered the ampoules and will soon have some more quality of life back, don’t be shy posting here if you need help with the injections (you’ll be a pro in a week!) perhaps in the future we’ll be treated better but for now, I’m just happy we’ve got a very safe and effective medication!
I was told during lockdown that I was being put on tablets instead of injections so I phoned up the surgery and told them I had tried tablets before and they didn’t work, after a bit of arguing my case I was then given my injections back. So try telling your surgery the same and see what they say. Hope it works out for you 😁
If the Intrinsic Factor antibody (IFab) test is used to determine whether you have PA or not, it needs to be known by GPs that antibodies attack when they feel like it and not necessarily when the test is performed, and that once there is no Intrinsic Factor to attack they probably won't stay there !
Those with PA only have a 40-60% chance of a positive test result.
I have had three negative IFab tests.
Two of my sisters have Grave's disease, my immediate family is prone to psoriasis and vitiligo, my cousin and my niece have b12 deficiency and one of my sisters has to take autoimmune suppressants. I have B12 deficiency which was diagnosed later as functional B12 deficiency.
My GP restarted my injections at 2 per week and continued this for 6 months, as she could see this as being effective. She also sent me to consultants to ensure she had not missed anything else ; bowel cancer, Coeliac disease etc. She hadn't. She also regularly monitored my folate, ferritin, vitamin D and thyroid - and never again my B12 !
My NHS B12 injections were eventually stopped by a new GP who panicked about my self injecting frequency (continued at same frequency as above) .
Oral B12 has been proved not to work for you, and won't this time either. Do not be tempted to prove this to your GP - as a teaching method, it's a high-risk strategy !
Those who have B12 deficiency and present with neurological symptoms should be treated with EOD injections until no more improvement can be gained by this. At which point, the aim would be to maintain those gains; a maintenance dose is unlikely in reality to be the same for all patients presenting this way, and would require regular monitoring to ensure that this regime is capable of pre-empting the return of symptoms (a deterioration that cannot be measured by total serum B12). So an effective maintenance dose can be discovered if a good patient-doctor relationship exists.
I really don't think this is about cost. I think underestimating both the range and severity of symptoms of B12 deficiency has led GPs to believe that a return to normality is a measurable given. All the rest is "something else going on".
I purchase the Hydroxocobalamin regularly although they often supply cyanocobalamin and Methylcobalamin also. Panpharma is the brand and rarely get a sting which isa real bonus!. It seems to suit me x
£15 a jab, steep. This is the address I found in the privacy policy, I couldn’t find one anywhere else. . [Address removed by admin] If you go there on Google Earth you will find what looks like an unkept exterior, council house. I personally would be wary.
I was just curious . I only buy from German online Pharmacies . I know how strictly they are controlled ( I lived in Germany for 20 years ) The B12 ampoules they sell are all made in Germany . But thank you very much for your information . Very kind and thoughtful of you to look that up!
I have already sent Kangaroo82 the information to get B12 ampoules from Germany to his/her private messages .
I reckon it's just someone buying it from Germany and splitting the packs up to make a profit. It says the site is run by a "qualified and insured vitamin injection practicioner" sounds dubious, I guess maybe a beauty therapist type person? I guess if it the legit stuff then it's ok just very expensive
Thanks for this. I contacted them to question them. Was surprised to find it was actually a pharmacist (provided me with insurance certificate) and the property is an old image not updated on Google maps since it was bought... I was starting to worry.
Sorry but the prices are outrageous...and also its illegal to sell injectables in the UKI buy from versandapo.de..works out around £1 per injection,including the syringe and needles which I buy from Medisave.co.uk
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