Long term affects of b12 injections

[Ctadds1]

I am seeing a new doc who has Me concerned. Serum B12 is 1500+ and MMA is low range. I need injections one per week to feel well but I try to push myself to 10-12 days. This new doc wants me to stop injections completely and says since my blood levels are so high it’s not needed and could very well do harm long term. Thoughts ? Has anyone had any negative long terms effects from frequent B12 injections for long periods of time?

[Nackapan]

Did he say what long term effects. ?Did he give evidence?

I was on every other day b12 injections when a long awaited appointment with a neurologist frightened me like this too.

He also said I was addicted .

I hope you don't stop your injections.

Especially if you are well.

Stay well.

Who is this new doctor

A specialist or a G.p ?

[wedgewood in reply to Nackapan]

There is no scientific evidence anywhere that high doses of VitaminB12 does any harm . Ask for chapter and verse and references for this statement of your doctors . I’ve been injecting weekly for 6 years now . No harm has come to me , just freedom from almost all the PA. symptoms that were plaguing me . You need injections often enough to keep your symptoms at bay , no matter how often that may be .

[Nackapan in reply to wedgewood]

I think that was for Ctadds1

[wedgewood in reply to Nackapan]

yes , it was ! Hope she reads it !

[ACritical in reply to wedgewood]

Same here. My migraines almost non existent, If I start getting one I go back to loads up for a week then back to weekly or the most 1 in 10 days

[wedgewood in reply to Nackapan]

sorry Ctadds1, I accidentally sent my reply to you to Nackapan . So have a look please !

[Nackapan in reply to wedgewood]

It's happened again I wonder if the I T is wrong again

[Ctadds1 in reply to wedgewood]

Thank you both very much! She had zero evidence just said it could have long term effects. She is an integrative medicine doctor who is helping me balance my guy issues. It just made my anxiety increase a bit but I didn’t think there was any evidence to support what she was saying. Thank you

[Midnight_Voice in reply to Ctadds1]

I guess relationship counselling comes into it as well then?

Though I see that ‘y’ is right next to ‘t’ on my keyboard 😀

[fbirder in reply to Ctadds1]

I would suggest seeing a real doctor, rather than a practicer of alternative medicine.

sciencebasedmedicine.org/in...

[Ctadds1 in reply to fbirder]

Yes I have. The doctor that has prescribed me B12 is a regular physician and allows me to self inject 2 times per month and doesn’t think it will do any harm. I hate that doctors provide such conflicting information

[Bellabab in reply to Nackapan]

As a retired consultant psychotherapist who specialised on working with people with addictions I can tell you with confidence that the use of EOD injections bears no similarity with the experience of any of my hundreds of clients.

[Nackapan in reply to Bellabab]

Thank you It really threw me at the time

It's conducting advice when you are not operating on full steam

Can at times make you doubt the treatment As so much DIY

[Parlay]

There is a really good video on you tube that explains quite clearly how we can have high b12 levels on our blood test results yet still feel rubbish and feel relief from an injection. The test counts all b12 analogues I think they call it, so all the b12 we can’t absorb into our cells. From food, from injections etc. We want it in our cells or in our hepato circulation not in our blood. So don’t worry about ignorant Drs. The more Drs I see the more ignorance I find.

[ACritical in reply to Parlay]

Can you put the link on to this uTube video please.

[ZennorB]

I had high B12 levels from NHS blood test. It was from oral supplementation. It was circulating in my blood but wasn't actually working. I knew for sure i was b12 deficient - probably a functional problem - when I started patches and felt much better. Now I'm on a mix of adynosol cobalamin and methylcobalamin in a 1 mg injection about once a week. It's made a huge difference to my life energy wise and I rarely get depressed now. So, imo, the sort of tests you get at the GPs, don't actually indicate whether the B12 is getting where it needs to be. Go by how you feel. If the B12 doesn't make you feel better you need to spread it out a bit and if it does, you maybe need to think about taking it a bit more frequently. You can buy adenysol and methyl for injection from pharmacies in Germany.

[KEFNB in reply to ZennorB]

Hi ZennorB, I would love to know what pharmacy you get your adeno and methyl B12 from in Germany. I have only been able to get the hydroxo and it stings terribly. I don’t have that reaction with other types of injectable B12 and I suspect it is a preservative causing the stinging. I warm the B12 and needle up prior to injecting, but I still dread it.

Also, if you think of it would you post a link to the UTI email video or provide key search words. I’d like to show it to my doc.

Thanks so much!

[KEFNB in reply to KEFNB]

Sorry, you didn’t mention the YouTube video!

[ZennorB in reply to KEFNB]

Hi KEFNBI get it from Arnika

arnika-apo.de/informationsp...

Their email address is on their website. If you email them and tell them what you want they will send you a price. Or just ask them what sort of adenysol and methyl cobalamin they have. I haven't used them since Brexit, but hopefully it's the same, except it will probably be more expensive.

btw, I'm not totally convinced by the theory that you can't have too much B12, because you excrete it all. So I wouldn't go mad. Hope it goes well though. Best wishes ZennorB

[KEFNB in reply to ZennorB]

Thank you so much ZennorB! I’ll check them out. I really appreciate your taking the time

[fbirder in reply to ZennorB]

stichtingb12tekort.nl/engli...

[fbirder in reply to KEFNB]

There is no preservative in any of the hydroxocobalamin I've ever sourced from Germany.

[KEFNB in reply to fbirder]

Hmm, I wonder what causes it to sting me so much. As a nurse, my experience is that is often the cause. My husband has been on injectable for RA and changing the preservative removed the sting from his med. I don’t read German-it was an educated guess

[fbirder in reply to KEFNB]

This is the information on Rotexmedica Hydroxocobalamin, the form that most of us prefer - medikamio.com/de-de/medikam...

This is Chrome's translation of the relevant bit...

What B12 DEPOT-ROTEXMEDICA contains

The active substance is hydroxocobalamin acetate .

1 ampoule with 1 ml solution for injection contains 1000 µg hydroxocobalamin acetate.

The other ingredients are:

sodium chloride, sodium acetate, acetic acid, water for injections

So the ingredients are B12, water, salt and vinegar.

[Cherylclaire Forum Support]

I have been self injecting for years now and not had any side-effects beyond spots at the beginning (mainly on face and neck and in ears. These don't last long, this problem soon went and very very rarely returns: usually only after a period of being unwell.It hasn't been a cure for me, progress was slow and I haven't had a single day without symptoms - but I'm so much better than I was, and in no hurry to reduce the frequency.

It takes time for some.

[Ctadds1 in reply to Cherylclaire]

Do you mind me asking, how often do you inject?

[Cherylclaire Forum Support in reply to Ctadds1]

Now, it's every three days, but I started with every other day. I was, at one point, getting 2 injections a week from GP -and was doing very well- but this stopped when I became ill again six moths later. The trouble with B12 deficiency, in both diagnosing by symptoms and determining an effective frequency, is that symptoms can be many and varied (even in an individual) and a positive response to injections may be a long time coming.

Some permanent damage may occur if nothing is done however, and reduction of effective treatment is quite likely to bring about a return of symptoms or a deterioration of some kind - which is far more perturbing to me than having a few spots !

Besides which, my partner is always quick to notice return of symptoms if I've missed one or been a bit late.

So what I'm saying is that what works for one will not be useful for another. My cousin gets an injection every 6 weeks from her GP - and is fine at that frequency. It may not be that which is recommended in medical guidance, but her GP is sensible enough to have treated her as an individual.

[lynxis]

I inject almost every day for over a year now. I do NOT want to be on daily injections, but my quality of life degrades without them, particularly my sleep. I think I just went too long before I got my diagnosis and it's going to take a long time to repair the neurologic damage, if it ever does. Do I worry about long term effects? Yes. (I'm only 40.) But it seems like a moot point if I can't function without them anyway. I would be ecstatic to be able to go 10 days without an injection, btw. We're all just doing the best we can.

[Sleepybunny]

Hi,

"This new doc wants me to stop injections completely and says since my blood levels are so high it’s not needed and could very well do harm long term"

Perhaps your doctor would be interested in reading the following articles?

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Your doctor might find it helpful to read Table 1.

Misconceptions about a B12 deficiency

(from Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/engli...

Testing B12 during treatment

stichtingb12tekort.nl/engli...

TESTING B12 DURING TREATMENT (PAS article)

pernicious-anaemia-society....

Above article refers to UK documents and has some useful quotes.