More b12 injections

[gemmacampbell]

I'm currently on loading dose 5 out of 6. The doctor said to have 6 loading doses followed by one every 12 weeks. I'm feeling worse from the loading doses what happens if the doctor won't give me more so I have the injection every 2 days rather than wait the 12 weeks each time? I can't afford to buy my own all the time and worrying I won't ever feel better. Only symptom was headaches everyday for 2 weeks and now with loading doses headaches worse and some pins and needles in my left arm and leg/foot now and then

[QianYunxi]

You can get a high dose trustworthy sublingual methylcobalamin B12.

Then also a b complex and quality multivitamin, while looking for a better solution in the meantime.

With B12, it's better to deal with it as fast as possible.

[gemmacampbell in reply to QianYunxi]

Thats great thankyou! Just looked online there's all different types and brands of the b12 tablets which would you suggest? What's the best strength to have?

[Pixie330 in reply to gemmacampbell]

Personally, I prefer the B12 patches - so they may be worth looking at too.

[gemmacampbell in reply to Pixie330]

Perfect will have a look thankyou!

[QianYunxi in reply to gemmacampbell]

I would suggest that you get one that has 5000mcg and is slow release.

Btw, B12supplies.com sells methylcobalamin injections at a good rate.

[bookish in reply to QianYunxi]

Hi, I would advise caution suggesting such a high dose of methylcobalamin as a first supplement. Too much methyl can make some people hyper, anxious, jittery, even paranoid and suicidal, so it might be better to start with a lower dose and then take more if and when you feel ok with it. Something like Cytoplan 500mcg/500mcg methylcobalamin/adenosylcobalamin sublingual. I started with Metabolics liquid B12 (methyl) so that I could take just a drop or two and build slowly. Cheers

[bookish]

Hi, your B12 serum level was very low, from your previous post. I can't see any mention of the cause of your deficiency, which is important. Are you on medication which depletes it, or are you vegan/dietary cause and approx what age are you - once you get to 50ish you cannot absorb enough from diet to stay healthy and it is less likely that oral or sublingual will be enough. Did your GP do any other tests, to check for pernicious anaemia perhaps, and do you have any family history with B12, or any autoimmunity? You have neurological symptoms, even if they were previously masked - sometimes you don't know that parts of you have gone numb until you get the B12 and feel them coming back, causing pain. So you really need regular, frequent injections until you stop improving, then you move to maintenance doses. Oral at this point could skew the picture for your doctor.

[gemmacampbell in reply to bookish]

I'm 32 I've not got any medical problems I probably don't have the best diet I don't like alot of foods so I stick to the same foods which is probably the cause. I had a full blood test and everything came back fine apart from the low b12. Spoke to the nurse today she is going to do my bloods again Friday before my last loading dose but from the sounds of it I don't think they are going to give me any more injections other than the 12 weekly. I checked my medical records Jan 2021 my b12 was 210 then June 2021 it was 170 and as of May 2024 the level is 77. With my last 2 pregnancys I was anemic so was on iron tablets not sure if that has anything to do with my levels dropping

[bookish in reply to gemmacampbell]

Ok, some other points there. Usually serum B12 should not be tested once injections have started because it will be high (should be high) because of the injected B12. But as yours was so very low, it might be useful, as it is possible that it will still be low, or not very high anyway. In which case, they should continue to treat regularly and do more tests. Make sure you get a copy of the results of all tests. By 'everything else fine' do you mean that the iron is now good? Ferritin needs to be well above the bottom of the range, not scraping the bottom. The symptoms can be very similar and they work together. An iron deficiency at the same time as a B12 or folate deficiency can also obscure markers in the blood that a GP may see and act on. Do you have folate results?

How do the pregnancy timings fit into those B12 results and how many children do you have, and have you had any gas and air (nitrous oxide) for labours? They should have been treating you by June 2021 at least. If the mother has healthy B12 levels when pregnant, then they will drop as B12 is passed to the foetus through placenta, giving the newborn baby healthy stores for 6-12 months. If the mother is even slightly deficient though, the drop in her own B12 can be significant and cause symptoms and the baby can be deficient too and remain so if breast fed by a deficient mother, causing other issues. There are other tests which may show this - methylmalonic acid may be raised and so may homocysteine (in you or children or both, and they should have B12 checked too).

As to diet, milk is a good source if you use it, plus meat, fish, eggs. If you really don't have any other history and you know that you were not eating any B12-containing foods then oral or sublingual supplements may work for you in high doses if you cannot possibly get any more testing and injections. But this is a last resort, as you should be getting more testing and treatment until those new neurological symptoms have gone and you stop getting better, which takes time and patience. Please do not underestimate how serious a B12 deficiency can get. Doctors do not know enough about B12, so you need to know at least the basics. Best wishes

[gemmacampbell in reply to bookish]

Serum ferritin is 24 and serum follate is 4.9. I don't have any more b12 levels other than with my last pregnancy which was Jan 2021 and I gave birth in Aug 2021. I have 3 children I was fine with my first in 2013 and then in 2018 with my second I was anemic and them again with the third in 2021. I had gas and air with all births also. I've started to drink milk and having eggs, mince, spinach

[bookish in reply to gemmacampbell]

That's good about the milk and eggs etc. Your ferritin is still awful, so try to get them to do something about your iron. I use Spatone but you can get patches for that too if GP won't help. You need the iron to make healthy red blood cells and the B12 can't work so well without it. Folate not too bad, although it may drop with the B12 treatment as you will use it faster, so keep an eye on it. If you breast fed, especially the third, but probably also the second, I would ask for serum B12 and preferably methylmalonic acid (MMA) to be checked in both, just so you know. It is important for growth, development, bones, cognition, mood and behaviour etc etc etc. You do not want them to have low B12. Diet may have resolved it by now, but best to be sure.

Serum B12, the normal test, includes what are called inactive and active forms of B12. Only the active bit can get to the cells. There is a test for active B12, also called 'holotc', which you could ask for or could do privately. The problem with gas and air (nitrous) is that it can inactivate a significant chunk of your total B12 , so that the serum level looks ok but you can't use much of it. I suspect that your active will also be low and was probably low in 2021. They certainly should have retested you sooner than 2024 and given you dietary advice in 2021. They probably ignored the low B12 then as a pregnancy thing which would resolve itself and clearly it hasn't, but it was risky to give you gas and air and no follow-up. Your MMA and homocysteine will probably start to correct quite fast with the B12 injections so it would be worth trying to get them to look properly at your B12 metabolism and cause of deficiency as soon as possible. Then you will be more certain that you don't have an underlying metabolism issue as well as a dietary one - vegans still get pernicious anaemia, so it should never be assumed that a deficiency is purely dietary. There are lots of types of B12 deficiency as there are a lot of places where things can go wrong (and it is strongly genetic). Cheers

[ClaireWF1346]

I agree with everything bookish has advised you about here. I had my loading doses in March 2024 and found I was having new/worsening symptoms such as dizziness and tinnitus. Reassurance on this forum told me that nerves and damage were healing but it's unnerving when it happens to you. My GP wanted to send me away with a B12 oral supplement after 6 loading doses and no more injections in the future. I massively kicked off because I'd done a lot of research by this point and knew that wouldn't do anything for me (it's now been shown by a private specialist that I can't absorb B12 properly, so I was right to argue). After those loading doses I had weeks with no B12 "coming in" and felt extremely tired, breathless etc.

As bookish says, it's important to understand the cause of your deficiency. I am fortunate to have some saved cash which allowed me to see a private specialist but the end result was the same as many people on here - self injecting at home. I have been doing this for over a month and at the same time educating my GP about the proper B12 deficiency treatment. I now get B12 on prescription and use my own needles and syringes. But most GPs won't listen unfortunately. I was similar to you with ferritin and folate and I take daily iron which I bought myself and both folic acid and vitamin D on the days I inject. As bookish says, they all work together with B12 and are important to recovery.

It's really hard...but you need to try and get some help from your GP. If you have time to read the PAS website and take some information with you, it may help. Wishing you good luck and as hard as it is...try to keep your stress levels low as that also sucks your B12. I know this is almost impossible when you're battling this all and have kids but try to take life steady. Keep us posted.

[bookish in reply to ClaireWF1346]

Hi, I'm glad that you are making some progress and that you are getting your B12 prescribed. May I ask how often you are injecting (hydroxo?) and what the private specialist tested? Thank you. I started my loading doses in April after many years of oral and sublingual which are no longer enough. I am still getting a weekly injection but will SI if it becomes necessary. Absolutely agree about keeping the stress down - I use magnesium, which helps a lot, and sing......but the reversing out is unnerving and catches you by surprise when something 'new' hits. Best wishes

[ClaireWF1346 in reply to bookish]

Yep, it's hydroxocobalamin and I'm on every other day at the moment. I take iron each day and then D, folic acid on jab days too. I have a list of the tests done, but they don't mean much to me. If you'd like me to send a picture, just drop me a private message and I'll add a photo if I can!

Magnesium...haven't come across that in my research yet but I actually ended up resigning from a very stressful job as I could feel myself getting worse. I think I've been deficient for years but it's been ramped up by stress of a new job 15 months ago as that depleted whatever B12 I did have. My symptoms only really because life affecting after 3-4 months in my new job.

I also love to sing. B12 choir anyone?!

[bookish in reply to ClaireWF1346]

That made me smile - love the idea of a B12 choir. 'Needles and Pins' perhaps, or 'I See Red' or just 'Don't Give In'....

Some say magnesium is more important than D, certainly helps you to absorb it. Very calming, I use an oil spray at night rather than tablets.

Will PM, thanks.

[ClaireWF1346 in reply to bookish]

Ha!! I think you're on to something there! I will certainly look into magnesium!

[Jo5454 in reply to ClaireWF1346]

Can I ask how your private specialist discovered you couldn't absorb b12 properly please? Was it via MMA test? Many thanks...

[ClaireWF1346 in reply to Jo5454]

Sure! They ran a set of "auto antibody profile" tests and they were all negative. I don't actually know what an MMA test is but it isn't on my list of results!

[Jo5454 in reply to ClaireWF1346]

Thank you that's very interesting...so they concluded that if all results are negative that you couldn't absorb b12? Would you be able to share what they tested for or are there too many please?MMA builds up if there isn't enough b12. It can happen due to other reasons but very useful in diagnosing b12 deficiency. But doesn't mean you haven't got a deficiency if it isn't high either! Just useful.if it happens to show up! Thank you...