Vitamin B12 liquid drops/sprays - Pernicious Anaemi...

Pernicious Anaemia Society

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Vitamin B12 liquid drops/sprays

Whin91 profile image
19 Replies

I get injections every 3 months. Still constantly tired throughout. Has anoyone taken the liquid drops or nasal sprays whilst on injections?

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Whin91 profile image
Whin91
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19 Replies
charks profile image
charks

Many people find oral B12 doesn't work but others, including me, find they do. I have PA so it must be working for me via passive absorption. I buy liquid form and dilute it in water and drink it throughout the day. It is always worth trying before resorting to injections.

Whin91 profile image
Whin91 in reply to charks

Thank you. The injections are prescribed and administered by my GP as a result of PA. I just wasn't aware that strong doses of liquid B12 were available. I wonder if taking both is a good idea or not.

Polaris profile image
Polaris in reply to Whin91

Sally Pacholok, in her book, "Could it Be B12? ", recommends supplementing between injections.

Have you tried Lipolife Liposomal B12 ?

Whin91 profile image
Whin91 in reply to Polaris

I have not but I will look into that.

laineyeo1 profile image
laineyeo1 in reply to charks

Hi, I also have PA, I have injections Monthly but I also use the liquid spray daily.. I get it from Amazon.. I find it does help me .

WiscGuy profile image
WiscGuy in reply to charks

charks, can you say what characteristics you look for when choosing among available liquid forms of B12?

charks profile image
charks

You can't overdose on B12. Your body is in desperate need of B12 to repair itself. I think the more it gets the quicker the repairs go. It is what happened to me. I was taking oral B12 in tablet form before switching to my new protocol. It was like the difference between night and day.

Whin91 profile image
Whin91 in reply to charks

That's really helpful, thank you. I'll pick some up and give it a go!

charks profile image
charks

Would you like me to PM you with details of my protocol and where I buy from?

1Thesaint1 profile image
1Thesaint1 in reply to charks

I wouldnt mind that info please

Whin91 profile image
Whin91 in reply to charks

Yes Please!

Nackapan profile image
Nackapan

Not sure if you got my reply whin91?

Hamayeshguy profile image
Hamayeshguy

If you want to be helpful. Drop in a bottle of water and drink it whole day. Start with 15000 mcg a day. Don't let your symptoms develop. In my case I made mistake and after megaloblastic aneamia I started to take B12 timed release and sublingual fir seven months and in that time I was just tired but then I switched to cyanocobalamin injection and stopped taking B12 orally and also started to exercise lightly and all it caused my symptoms develop so fast. Watch your feritin don't let it go under 40 Ng/ml. Optimum level is between 45 to 70. Take methy folate along with b complex with low B6 . Inject B12 and hydroxocobalamin is the better work for most people. Sublingual doesn't work for most people. The secret of getting healed faster is steady B12 availability in the body and injection is not available in steady way that's why lots of people inject twice a day. I take 15000 mcg times release but I want to get liquid b12 as it helps to more steady B12 with lower cost. But I think liquid b12 in high dose is not available in most western websites and just china is main provider. Even mostly all of vitamins we consume in the rest of the world are made in china. It takes long time to get rid of this horrible disease. After one year and half and too much trial and error now I found myself still down the way and too many symptoms I have mostly muscle weakness and double triple vision, blurry eyesight, because I didn't know these stuff that I'm sharing with you. Try to self inject and buy B12. don't let your symptoms develop and keep them at the bay.

Libuse profile image
Libuse

I have been having 3 monthly injections since June for dietary B12 deficiency and realised immediately that they are just not enough.

With tremendous support from this site I finally found the courage in December to self inject every two weeks and feel so much better for taking the plunge!

In answer to your question I also use B12 patches and oral spray, both available on Amazon. Not sure if they help very much but they do lift my spirits and make me feel better……..

Whin91 profile image
Whin91 in reply to Libuse

That's helpful, thank you.

Gambit62 profile image
Gambit62Administrator

High dose oral can be very effective - as can nasal sprays - but they are best started immediately after an injection. However, they don't work for everyone but the only way of knowing if they are going to work is to try.

Cherylclaire profile image
CherylclaireForum Support

When I was at the start of this, I found that I was deteriorating further on 3-monthly injections and, in desperation, tried supplementing with the B12 Boost spray (available from high street health stores )- and found it did nothing for me.

Luckily my GP realised that I was struggling, got my methylmalonic acid (MMA) tested - and restarted my injections at 2 a week for six months, because MMA was still raised and symptoms had been worsening. That worked.

We are all different. I doubt that people who find an injection every 3 months effective need this forum often.

I'd give it a try to see if it helps.

Worth saying that the current guidelines now advise injections every 2-3 months as a maintenance frequency. Also that if you have presented with neurological symptoms, you should get injections every other day until no more improvement possible (plateau stage).

For a good look at the problems faced with guidelines, see one of SleepyBunny's latest posts: "NICE Guidelines - PA and B12 deficiency (UK)" where there is a link to queries and comments made on NICE's latest draft update by a panel of concerned experts- including the Pernicious Anaemia Society. It is 42 pages long, which only shows how many concerns there must be with the guidelines as they stand !

Whin91 profile image
Whin91 in reply to Cherylclaire

Ill chat to the GP about MMA and give that post a read. Thank you!

Cherylclaire profile image
CherylclaireForum Support in reply to Whin91

I printed out the 42 pages, armed with a highlighter, for a thorough read and found it useful to see what concerns are currently being expressed by which groups. New NICE guidelines will clearly take some time. Might also reveal where further research is needed most. But I remain hopeful.

Meanwhile, I would say that your GP might be reluctant to organise an MMA test as they are expensive and cannot be used for a PA diagnosis.

As MMA links to B12, a surfeit of MMA would suggest that either the link is not being made successfully or that there is insufficient B12 in the bloodstream leaving MMA to build up. A metabolic problem or a B12 deficiency. But there are other conditions that cause raised MMA and would need to be ruled out: any renal problem (a blood test) and SIBO (a 4-hour series of breath tests)- which I imagine is also expensive.

Please also be aware that having SIBO (small intestine bacterial overgrowth) would not rule out B12 deficiency - quite the opposite: SIBO love to steal B12 from their host, along with other vitamins -oil-based vitamins such as A and K. It is a treatable condition: antibiotics -but can be difficult to eradicate, can return and can require changing the treatment as they can develop immunity.

So when distinctions get made between PA and B12 deficiency, it is as well to realise that the symptoms presented are the same: those of B12 deficiency. This I believe to be a key concern expressed by stakeholders, especially since an early positive PA diagnosis is sometimes difficult to arrive at scientifically. This can leave patients for many years in limbo -but it could also mean that some patients might have a curable condition - wouldn't that be a relief !

Injections prescribed and administered by your GP as a result of PA ?

If you have a PA diagnosis already, I would advise that you get a printed copy -

and then frame it.

You have a GP administering injections: this is I think quite rare. Perhaps s/he would be amenable to treating you with injections more frequently- especially if she is noting that response is not as anticipated ?

The aim would be to pre-empt any return of symptoms, for the best quality of life possible. A return of self. Perhaps a daily chart recording symptoms, frequency and severity, set against administered injection dates, would provide your best argument.

If any of your symptoms are particularly visible ( hair loss or mobility/balance issues for instance) your GP may well have noted this already. Besides, any neurological symptoms, as I've already mentioned above, have a different regime that include a maintenance frequency of 1 every 2 months.

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