B12 injections

hi I don't have Pa but had my terminal ileum removed 3years ago and can't absorb b12, started injections 3 months ago which are like a miracle, but becomes ineffective after 4weeks but guidelines are 3 months not every month, so my Dr has done mma blood and urine test. Waiting for results 😝

[PAS-admin Partner]

Not much point in testing MMA while on injections I'm afraid, will probably be fine. Your Dr does not want to try and give you one every month because of your symptoms? I mean the guideline of 3 months is nonsense, lots of info you could give the dr that more won't harm and will usually do good. Have a look in our Pinned Posts on the homepage of this forum for some info on that and of course on our website. You can also try and supplement the injections yourself with, eg sublinguals/nose spray.

[wedgewood]

3 monthly are not often enough for a lot of people. Most GPs are adamant , and will not increase the frequency. It matters not one jot what the test results say , if the symptoms return you need extra. It happened to me. I now have to self -inject every week (sub-linguals and nose-sprays did not help me , but you should try them ..They might work for you .) Give them a try . Best wishes .

[wedgewood]

I can't understand why the surgeon didn't prescribe permanent B12 injections after removal of your terminal ileum . That is where your B12 is absorbed .

[Lisahelen in reply to wedgewood]

Because they havent got a clue! ( gave you the polite version there)

I think a lot of it also is if patient doesnt present with symptoms no need to treat. I have a lady(staff member) whom i have gotten friendly with down at my surgery who has had stomach surgery, when i ask her if she was on injections or has any deficiency symptoms she said no- so why would they treat her unnecessarily.

[Hidden in reply to Lisahelen]

thanks for all the replies nice to know not alone or going mad with so many symptoms and always putting them down to something else. I also get a really funny headache that never goes which comes with a numb forehead and this too goes with the injection. My GP has been great over the last few years as I also have hemiplegic migraines and an aneurysm which I thought was the cause of alot of my symptoms but now know they are due to having 11foot of terminal ileum removed. Feel so much better talking to people with the same problems 😊 thank you

[Gambit62 Administrator]

Unfortunately hydroxocobalamin is only licensed for maintenance frequency of 2 months in the UK. This is a quirk of the licencing system and nothing to do with any proven safety problem - particularly as none have been identified and it has been around as a medication in use in the UK since the 1960s. However, it does tend to have an adverse effect on most GPs and totally close down their ability to try anything out of the box.

I'm not aware of any scientific basis for the move from monthly (which it first was) to bi-monthly and then to 3-monthly - just seems to have been about cost cutting. Frequency changes to 2 monthly if you have neurological symptoms per BCSH and NICE guidelines.

The PAS frequently tried to kick of a study to identify why some people were okay with 3 monthly ... out of thousands of members they only had a handful come forward meeting the eligibility criteria for the study ... and even then most of them actually knew when the 3 months were up - implying that they weren't really okay with 3 monthly after all. Personally I have never met anyone who gets to 3 months without a problem - they may well be out there but everyone I've talked to and met has problems with 3 months. Many have problems with 2 months ... I have problems with 24 hours Unfortunately B12 gets treated as a one-size fits all thing when all the evidence is that it most definitely isn't a one size fits in.

All of which is a long winded way of saying that I'm not surprised you run out after 4 weeks - no reason to think that you aren't normal ... In many other countries using hydroxo frequency is 1 month for maintenance shots - certainly is in Germany.

[swimminthrutreacle]

Hi I had 2 foot of terminal ileum removed 45 years ago and have had all sorts of problems since and not much help from the NHS. Moving to France 9 years ago has dramatically changed things for me as I can now inject myself whenever I need to, currently about every 2 weeks, or more often if I have been overindulging diet wise. I feel better than I have for years and I feel sorry for the wasted years when I wondered what was the matter with me. My first elderly GP here was very understanding and encouraged me to inject as often as I felt the need. He has now retired and his younger replacement doesn't know a thing about B12, nor did the gastroenterologist, who didn't believe me, took me off injections for 4 months until I was sleeping all day, crawling round on all fours, falling over regularly etc.

However, the result is that I have the confidence and the energy now to carry on regardless and buy the stuff to inject myself. I am no longer " Swimming Through Treacle".

So my advice to you is to do the same. Don't wait for them to do their job, you could have a long wait! I wish you all the best.