I have noticed that Boots are now sel... - Pernicious Anaemi...

Pernicious Anaemia Society

32,669 members24,065 posts

I have noticed that Boots are now selling a spray to use sublingually. How will this affect my levels if used along with B12 injections?

Rosiered profile image
13 Replies
Written by
Rosiered profile image
Rosiered
To view profiles and participate in discussions please or .
Read more about...
13 Replies

Hi Rosiered, do you know which brand it is? Does it have Methyl B12 or a different type?

in reply to

To actually answer your question (?!) I use the Jarrow 5000mcg methyl B12 sublinguals which I take every day that I am not having a jab, and I also have a spray called Boost, which I use if I feel I need a bit extra. I'm not really concerned about my blood levels, since they were "normal" anyway before starting on the jabs. It's how you feel that matters, and if sublinguals help you inbetween jabs then why not? I'm not aware of any toxicity issues, unless you are sensitive to any of the added ingredients in these things.

Hampster

Rosiered profile image
Rosiered in reply to

Thanks for that I feel more confident now. I will look Boost up and try to get some!

Rosiered profile image
Rosiered in reply to

Thanks for that I feel more confident now. I will look Boost up and try to get some!

Rosiered profile image
Rosiered in reply to

Sorry I just found out about it!

doityourself profile image
doityourself

Hi,

I also use the Boost spray to do exactly what it says and boost my levels between injections.

You really must be guided by how you feel. Im convinced the best answer is to get frequency of injections right but from what I hear and my own experience doctors tend to stick to their guidelines and not how you feel when considering levels of treatment.

I am still struggling with symptoms during the third month even with the use of the Boost B12 spray.

Good luck and be well.

Rosiered profile image
Rosiered in reply todoityourself

Thanks for that. Why dont you insist your Doc allows you injections at 8 weeks instead of 12? My Doctor was really ok when I asked.

B12Turbo profile image
B12Turbo

I guess the above is the answer, it's how you feel!!! What is your body telling you, OK! if you feel you need more then go for it, BUT! I would just say, that from my own experience it pays to keep an eye on the serum levels, providing you have checked out your I.F. and your P.C.A. tests have both come back NEG then maintaining a set level which appears to be different for every individual, appears to work well for me. I haven't ascertained my base level yet, but I know that when my serum level goes above 500, then I do get G.I. problems, I am just about to re-check my base level, after 3 months without any oral B12. I may have been lucky, my levels go up nicely on 100 micrograms of Cyanocobalamin daily and can be maintained around 400 by taking only 50 micrograms daily. I take Cytacon tablets which I understand are the only licensed tablet on the market, in some areas they are available on the NHS, ask your GP if you are interested. I have also in the beginning added B2 and B6, as research has shown that B2 is needed to activate B6 and B6 is required for the absorption of B12. It will be interesting to find my base level, as I aam now beginning to get the tingles, I become confused and muscle problems etc. have now began to arrive. Time for the re-test of Serum levels I now feel.

Hope this helps and good luck.

in reply toB12Turbo

Yes, I take a B-complex as well, this is definitely a good idea.

Do you have the injections B12Turbo? My understanding is that the Cyano tablets are next to useless if you have PA, they may well be getting your blood levels up to "normal" but there's no guarantee that enough is getting into your system and being converted for use at tissue level. Gastric and neuro problems are symptoms of B12 deficiency, not of having a high serum B12 level.

Sorry, bad experience. Back in 2006 I was given the 6 loading injections followed by 4 months of those wretched tablets. After the 4 months were up my levels were tested and were about 350, I was told I was cured and sent on my way. I was ignorant and did nothing. I was tired because I had 2 toddlers, my hand was numb because of an old whiplash injury, etc. etc. there was always an excuse.

So my PA stayed untreated, my symptoms became many and varied, but all within a level that I "tolerated". Until I became very very ill a couple of months ago, complicated by a thyroid condition diagnosed last year. I insisted that B12 was a problem for me despite normal serum levels (around 300), and I was right - I had elevated MMA and tested positive for anti-parietal cells. I'm hoping that some of the neuro symptoms will reverse but there's no guarantee as I went so long without proper treatment.

So my rather clumsy advice to you is forget your serum levels and get some suitable B12 onboard instead (making sure that you have enough folate and ferritin as well, top half of the ranges).

Hampster

B12Turbo profile image
B12Turbo

Hi Hampster 1 Yes I have checked both my I.F. and P.C.A. came back negative and I did these tests prior to doing or taking anything, My serum levels were 131 at the start, via 100ug of cyanocobalin plus B2 & B6 daily, I managed to raise that level to 478 in 6 weeks, my GP also stated I was also cured and we disagreed on this point. After a battle of some months, I was eventually refered to a consultant at our local hospital, This guy was great, most helpful and understanding of the technicalities involved. My GP had even stated that if I wanted a referal to Guy's Hospital then he would even charge me for taking my samples, this was overcome by my consultant who agreed with me and ordered the tests. At Guy's Dominic Harington and I had a long telephone chat and the tests were arranged. My Holo/tc was in the gray area, so we ran an MMA and those levels were ok, so you see I have checked it all out scientifically as you so rigtly say. However, I do feel that perhaps the G.I. problems may indeed be created by the long term use of the Cyanocobalamin. (12 months in total). I am therefore now looking into the possible use of something which will reach the blood, without the need for it to enter the stomach. The idea of checking the state of the serum level first, is that I do already know the absoption factors and simply need the possible low level of the serum as a referrence point to work from, of course it is possible that it is still well up, but only a blood test can substantiate that of course. Oh! the answer to your injection question is of course NO! I have not had any, as I react badly to many drugs and once your arm has been pump full of B12, there's no getting it back out, I'm sure you understand that angle, particularly in the light of the number of people who report adverse reactions to B12 injections, or the fillers they may contain.

Mant thanks for your reply, I hope this puts your mind at rest.

Kind regards and Best wishes

B12 Turbo

in reply toB12Turbo

I can't believe your doc didn't offer you the jabs at 131, that's really low. Although totally understand your reticence if you suffer bad reactions to things. Someone else posted something the other day about trying to find an additive free sublingual, did you see that thread?

I hope you find something that works for you, there are patches as well but I haven't tried them?

H x

B12Turbo profile image
B12Turbo

Hi Hampster 1 My GP did offer me Jabs but I refused and at that point we agreed to disagree and the probs started. We have been good friends for years, but this did not go down well, especially when he was proved wrong again, I say again because it was the 3rd or 4th time in a few months over differing problems. G.P.'s don't like being proved wrong I guess, but we all make mistakes, G.P.'s included.

Thanks for your interest

B12 Turbo

Rosiered profile image
Rosiered

Great to hear from all. Clarified my thoughts!

Not what you're looking for?

You may also like...

GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.

This is a copy of his email in answer to my request for more frequent injections. ( I am aware you...
Showgem profile image

Do I need to treat folate now, or when my b12 levels are ‘normal’?

Hi there! I have finally managed to get my doctor to give me loading doses (after treating me with...
Misha- profile image

GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?

After thinking that my GP was great to acknowledge the fact that I need B12 shots every other day...
VickyB12 profile image

I have PA, all was going well, but now they're trying to mess with my b12 perscipton!!!

Hi all,I'm a long time lurker, but haven't posted myself in a while. About 8 years ago, I was...
Wowo23 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.