B12 And Metformin

dbr10

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Type 2
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My diet and lifestyle are both healthy, my T2 is well-controlled and yet I’ve just been diagnosed with pernicious anaemia caused by vitamin B12 deficiency. Until now (after consulting Dr Google), I had no idea that this is a well-known side effect of long term use of metformin. I’m lucky but for those people who don’t get diagnosed in time, the effects of pernicious anaemia can be horrid.
If deficiencies are found early enough, we can easily boost our diets with B12 supplements to keep our levels healthy - and help keep NHS costs lower. But now, I’ve got to have B12 injections for the rest of my life.

Why isn’t B12 a standard check during our annual diabetes reviews?
Why aren’t we advised by our care teams to take B12 supplements?
Why don’t the makers of metformin do something?
Because the NHS don't give a ....
 
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dbr10

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I think that sue-marie is right. There should be a routine test of B12 levels in any patient taking metformin. I would be angry if it was me or anyone I know in this position. Does anyone know if B12 levels are routinely checked in other countries ?
I think this is an important issue.
It is but they wouldn't bother until you had systems and check it then
 

althornton

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Well, I can say that here in France, a B12 check is not routine for Metformin users, although my excellent doc was happy to tag it onto a quarterly blood test. In fact I only became aware of the link after reading it on an earlier post on Diabetes UK. My result showed B12 as a lousy 196 pg/l which rates as subnormal. This after 5 years on Metformin and its ally Velmetia.

So I took high dose sublinguinal B12 for several years, which raised my level in the blood test to 250.

However, the chemistry of B12 is rather complicated, and I was advised by a friend that oral B12 does not really deliver, despite improving the test results.

So, I have been injecting hydroxocobalamin for several weeks, one shot every second day. So far, 15 shots.

This was something of an experiment to see what happened, at little risk, as the injection is regarded as innocuous.

I am self-injecting, which involved me being very brave! The B12 ampoules I buy without prescription from Germany, as the French pharmacies only sell cobalamin, which is apparently not as effective as the hydro variety. (B12 shots are only available on prescription in the UK.)

Results? My brain fog has vanished, I am no longer falling asleep all the time, and my general feeling of tiredness has vanished. I may be imagining it, but the neuropathy in my feet seems a tad improved.

There is a lot of information on B12 out there, much of it misinformation.

I do not have pernicious anaemia but the PA website is a wealth of info on B12, and the book 'Could it be B12' , also available on Kindle, is a good source of info.
 
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suhasini

Member
Messages
14
Type of diabetes
Type 2
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Tablets (oral)
My diet and lifestyle are both healthy, my T2 is well-controlled and yet I’ve just been diagnosed with pernicious anaemia caused by vitamin B12 deficiency. Until now (after consulting Dr Google), I had no idea that this is a well-known side effect of long term use of metformin. I’m lucky but for those people who don’t get diagnosed in time, the effects of pernicious anaemia can be horrid.
If deficiencies are found early enough, we can easily boost our diets with B12 supplements to keep our levels healthy - and help keep NHS costs lower. But now, I’ve got to have B12 injections for the rest of my life.

Why isn’t B12 a standard check during our annual diabetes reviews?
Why aren’t we advised by our care teams to take B12 supplements?
Why don’t the makers of metformin do something?

My thoughts exactly! A year into metformin and I was having all the typical symptoms of B12 deficiency. The doctor tested me and after a round of bi-weekly injections (totally 6 injections ), I was told all was good. I asked what if the deficiency came back after some time since I was also a vegetarian, and there was no reply. I read online and now take sublingual b12 everyday. I have also started taking B complex every alternate day. Even if the system does not have compulsory b12 monitoring for metformin users, the doctors can and should take it upon themselves to do so. Totally disappointed!
 

BrianTheElder

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My experience was that I had persistently low B12, which the doctor said was 'normal for me'. It was only after I had been taking B12 supplements for some time that I discovered that it was associated with metformin. The doc never mentioned that at all, even though I also had persistent tingling in my feet. When I came off metformin because my diet had given me a low HbA1c, my B12 shot up to about 1000 with warnings on the blood test report. He then said I should stop taking the supplement, but still no connection was made with metformin. I think they say whatever it needs to get you out of the room without a fuss.
 

jjraak

Expert
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7,442
Type of diabetes
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This is from Jenny Ruhl's website :

"Metformin May Deplete Vitamin B-12 and Folate
Metformin has one more significant side effect. It may deplete Vitamin B-12 because it may alter the ability of the body to absorb vitamin B-12 from the gut. If this is the case, oral supplementation will not help. You would need to have Vitamin B-12 shots to address this deficiency.

Thank you alex..most illuminating.
every day on here is a school day, i am learning so much about this condition thanks to all you wonderful members.

I also dug in to see if i should consider purchasing some b12 supplement, if required, once i get my doctor to add that to my blood tests.

the points i noticed most was that the damage done by Diabetic neuropathy & b12 deficiency neuropathy, are that both, once symptoms appear, may well be after the event and the chance to better manage the symptoms has passed by.
At this point it seems the conditions then are harder to manage, and damage may well be irreversible.

A point i would very much like to avoid.

i came across a few searches that suggest that B12 in
Methylcobalamin form, maybe the best way to take it in.

It sounds like its the type that sits under your tongue, as a few postees have described.

a little light reading may be of some use..?

"Why is Methylcobalamin best option to treat Diabetic neuropathy?
Cyanocobalamin, Methylcobalamin, and Hydroxocobalamin are the three therapeutic agents of vitamin B12,

but Methylcobalamin is best in comparison to other generic forms.

Cyanocobalamin is inactive and needs to convert in Methylcobalamin and also not readily absorbable in the cellular structures.
Whereas, Hydroxocobalamin is a bioactive form, but cannot be given orally and Hydroxocobalamin injections are painful.
A clinical review report showed that among other vitamin B 12 analogs,
Methylcobalamin is best to treat vitamin B12 deficiency.
After oral administration of Methylcobalamin, sufficient amount of this active component is available in the blood in comparison with Cyanocobalamine.

https://indianpharma.in/industryTre...amin-best-option-to-treat-Diabetic-neuropathy.

.
 

jjraak

Expert
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Just a slight side note.
i have a few older blood tests that i printed out, current information format from the doctors website style leaves a lot of data out.

I wonder if anyone can answer the question....
Would the test state.."B12" or would i be looking for the B12 value in my blood under another title (IF i was done, of course)
 

SimonCrox

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317
Just a slight side note.
i have a few older blood tests that i printed out, current information format from the doctors website style leaves a lot of data out.

I wonder if anyone can answer the question....
Would the test state.."B12" or would i be looking for the B12 value in my blood under another title (IF i was done, of course)

B12 tests are always labelled B12 levels,

The reference range changes now and then, but the label is still the same.

Best wishes
 

SimonCrox

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Messages
317
My thoughts exactly! A year into metformin and I was having all the typical symptoms of B12 deficiency. The doctor tested me and after a round of bi-weekly injections (totally 6 injections ), I was told all was good. I asked what if the deficiency came back after some time since I was also a vegetarian, and there was no reply. I read online and now take sublingual b12 everyday. I have also started taking B complex every alternate day. Even if the system does not have compulsory b12 monitoring for metformin users, the doctors can and should take it upon themselves to do so. Totally disappointed!

If you have developed B12 deficiency on metformin, it will come back. If you stop the metformin, 50% of time it will come back. If the level was only slightly low, oral B12 may well keep levels up, but if proper deficiency, injected B12 is preerable.

One can use oral B12 in B12 deficiency, although the problem is poor B12 absorption, cos one is giving a large dose of oral B12 - the amount of B12 in multivitamin preparations is probably not going to have the 100 mcg usually prescribed.

Oral B12 is cyano-cobalamin, and injected B12 is hydroxy-cobalamin; some of the problems with severe B12 deficiency have been attributed to the cyanide moitie in the old cytamen (cyano-cobalamin) injections, so if neurological or cognitive problems with B12 deficiency, I would go for the hydroxy-cobalamin injections - indeed I do - 1mg IM every three months now

best wishes
 
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Q007

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My GP (Dr Doom).
B12 tests are always labelled B12 levels,

The reference range changes now and then, but the label is still the same.

Best wishes
Hi there, I'm deficient too, injections every 3 months didnt work so they now do them every 8 weeks. Theresa May does them as it's easier to get an appointment with her than a nurse. I'm reading some theories that they don't do anything. Google it.

Anyone else have anything to share? Kind regards, Q
 

SimonCrox

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Hi there, I'm deficient too, injections every 3 months didnt work so they now do them every 8 weeks. Theresa May does them as it's easier to get an appointment with her than a nurse. I'm reading some theories that they don't do anything. Google it.

Anyone else have anything to share? Kind regards, Q

Agree about getting appointments with nurse, so I do the jabs myself - initially used upper arms, but a bit fiddly and I was using probably the same spot, so now use anterolateral thigh - bigger area to hit.

May I ask how you knew that 3 monthly wasn't working? I have seen a few folk who feel very tired etc for the days/week before the jab is due.

Not sure if the "theories that they don't do anything" relates to B12 jabs or nurses?

Best wishes
 

Q007

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My GP (Dr Doom).
Agree about getting appointments with nurse, so I do the jabs myself - initially used upper arms, but a bit fiddly and I was using probably the same spot, so now use anterolateral thigh - bigger area to hit.

May I ask how you knew that 3 monthly wasn't working? I have seen a few folk who feel very tired etc for the days/week before the jab is due.

Not sure if the "theories that they don't do anything" relates to B12 jabs or nurses?

Best wishes
Hi Simon hope you're doing well today. Thanks for the reply too.

I called it that 3 months wasn't doing anything and asked if they could pull it forward to two months. All I want to do is sleep.

The theories that they do nothing much for you are there on the web if you search for it. I hear there are tablets you can take but I'm unsure if they're better or worse.

I have mine in the deltoids and quite painful if my arm muscles haven't fully relaxed before they call me.

In the early days when I was having the loading dose and then the first 3 month jab I felt the lift but since, I feel no different for having a dose.

You must be a medic? As they won't let me administer.

Do the injections do anything for you interested to know.

Warm regards, Q.
 

Q007

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My GP (Dr Doom).
Oh, I dont metformin
 

SimonCrox

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Hi Simon hope you're doing well today. Thanks for the reply too.

I called it that 3 months wasn't doing anything and asked if they could pull it forward to two months. All I want to do is sleep.

The theories that they do nothing much for you are there on the web if you search for it. I hear there are tablets you can take but I'm unsure if they're better or worse.

I have mine in the deltoids and quite painful if my arm muscles haven't fully relaxed before they call me.

In the early days when I was having the loading dose and then the first 3 month jab I felt the lift but since, I feel no different for having a dose.

You must be a medic? As they won't let me administer.

Do the injections do anything for you interested to know.

Warm regards, Q.

Hi
Your GPs must be fairly flexible to allow 2 monthly B12; in our area, a lot of elderly have B12 deficiency (the cells lining the stomach that make intrinsic factor to help absorb the B12 shrivel up with age)m and the GPs are not exstatic about the number possibly needing injections.
Hence with slightly low levels, 100 mch of cyanocobalamin orally is used and it seems to kee the levels up.
The B12 really stops some things from getting worse (my neuropathy has not worsened but it hasn't really improved), but will dramatically improve other things such as the pernicious anaemia.
Yes - retired medic - well, mainly retired; but my practice stated that they have a lot of people doing the jabs themselves, so either fibbing (whcih I doubt), or lots of HCPs with B12 deficiency diagnosed (which I doubt) or just very open minded. As a doctor, I gave one person an IM injection in 40 years, so I didn't have much experience; the clinic nurse showed me how to do it and I just got on with it, but mainly learnt from the intenet.
Best wishes
Simon
 

Q007

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My GP (Dr Doom).
Thanks for the reply, if the hydroxycobalamin isn't working at 8 week intervals would the sublingual option be better for me taking in to account IF?
 

DCUKMod

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I'd just like to drop into the mix that there are many conditions where low B12 (and oftentimes other vitamins) run low. The list includes hypothyroidism, which is very common, but even more common in anyone with an autoimmune condition.

It is also important to begin to understand where in any assay range you really need to be. Even if the NHS is testing B12 (and other stuff) just being in range doesn't necessarily mean it's optimal.
 
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SimonCrox

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Thanks for the reply, if the hydroxycobalamin isn't working at 8 week intervals would the sublingual option be better for me taking in to account IF?

I am not allowed to give specific treatment advice, but there is a really good article from New Zealand on the topic. Basically the metformin probably stops the end of the small bowel from absorbing B12 adequately; sometimes one can overcome this by giving a lot of B12 orally, although one USA study showed that this just did not work with taking metformin at same time, But sublingual B12 was as good as IM B12:-

https://www.nzma.org.nz/journal/rea...0-2019/2016/vol-129-no-1436-10-june-2016/6920

Thanks for the question - I did not know about sublingual B12, The sublingual B12 is still cyanocobalamin, which might not be great if low levels untreated and have neurological problems, but if low levels corrected with hydroxycobalamin jabs, should be fine since was what we used before early 1980's. Apparently, sublingual B-12 supplements often contain sugar substitutes such as sorbitol, mannitol or sucralose, which can cause gastro-intestinal upsets
Best wishes.
 
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Q007

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My GP (Dr Doom).
Simon, Appreciate you can't advise. One thing though I dont take metformin, my last Hba1c came in at 101, I was put on metformin and I had a very bad reaction to it so stopped it and I've called that in to the diabetic nurse. I'm going diet no meds route hence all the questions here.

The jab every eight weeks isn't doing anything for the symptoms dont move even the day of the jab.

Do you know if pulling the interval forward again and, typically to what will improve or maybe I should discuss oral methods, I'm not sure which is more effective either is this worth a conv with a doctor. Does it have to be a diabetic medic. All I know is oral paracetamol, for example does nothing no matter how high the does, but administered IV relieves pain in 30 secs. I been told by more than one doctor I'm treatment resistant to many drugs.
When I was really struggling with mood we emptied the medicine cabinet in the end we went poly- pharmacy with a mix of two drugs.

I understand any reply isn't given as a consultation but just experiences.

I would be grateful.

Best regards, Q