# Vitamin B12 deficiency



## AndyS (Jan 7, 2011)

For about 5 years I have had horrendous problems due to vitamin B12 deficiency.

I could probably write a few hundred pages on experience but would end up in tears with frustration.

Basically I was having really bad problems with a sore mouth, tongue throat and feeling really tired and teary.  After 2+ years seeing various Doctors \ Dentists, whoever would listen, vitamin B12 deficiency was picked up.  Started on 5 loading injections over 2 weeks then put on 1 injection every 3 months.  It's not lasting 3 months and thats where I end up losing the plot.

Approx 6 weeks after the B12 injection my mouth, tongue and throat become ulcerated, I have no energy and get really depressed.  It's pointless mentioning to a Doctor, all I'm told is "that's unusual" - One of my friends who live about 8 miles away who sees a different Doctor had exactly the same problem, he has the B12 every month and doesnt suffer as I am!

Andy x


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## Liz! (Jan 7, 2011)

Andy that's just terrible... and there's no reason why you should have to ut up with it. I would go in when you have ulcers and be assertive, say I need the injection monthly, or please refer me to the hospital to see a dietician. Just being firm and sure about what you want, and not just mentioning your problem but stating two alternatives for the Dr to choose from can make all the difference. Once you are referred, if it comes to that, you are much more likely to get proper treatment. I'd make a note on your calendar of exactly how long the injection lasts and your exact symptoms. There should be no need for you to suffer like this, it's terrible. Also, can you see another Dr at the same practice?

I wonder if anyone here knows what sort of expert you need to ask to see... i said dietician as that sees logical but it might be an endocrinologist,even your diabetes Consultant...


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## AndyS (Jan 7, 2011)

Liz! said:


> Andy that's just terrible... and there's no reason why you should have to ut up with it. I would go in when you have ulcers and be assertive, say I need the injection monthly, or please refer me to the hospital to see a dietician. Just being firm and sure about what you want, and not just mentioning your problem but stating two alternatives for the Dr to choose from can make all the difference. Once you are referred, if it comes to that, you are much more likely to get proper treatment. I'd make a note on your calendar of exactly how long the injection lasts and your exact symptoms. There should be no need for you to suffer like this, it's terrible. Also, can you see another Dr at the same practice?
> 
> I wonder if anyone here knows what sort of expert you need to ask to see... i said dietician as that sees logical but it might be an endocrinologist,even your diabetes Consultant...




Hi Liz

Many thanks for the reply.  I have consulted several Doctors and 3 different Dentists.  It would appear the B12 theory is extremely difficult to convince the 'Professionals' - About 18 months ago I stopped trying to get the problem resolved and tried a different approach, if they don't know what it is, surely they will help releive the symptoms? Big no there too.  I asked for pain relief and the instant reply was "mmmm that sounds like a bit of an addiction to painkillers" - I agreed with the Doctor and replied "I suppose it would Doctor, if you had actually ever prescribed some painkillers" 

I have even spoken to PALS (Patient Advice and Liaison Services) who advised changing to a different surgery which I did.  The new Doctor didn't like the fact I had approcached PALS and was extremely rude and unhelpful after my first visit.  PALS advised to change surgery again.  The last time I spoke to them they had promised to call back approx 4 months ago)

regards

Andy


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## margie (Jan 7, 2011)

Hi Andy - Low levels of B12 are also associated with metformin as it can destroy the "intrinsic factor" which allows you to absorb B12 from food and that is why you have to have it in injection form. Or at least that is what my GP told me when I was taking metformin and asked about taking supplements due to the warning on the leaflet.

I read somewhere that low levels of B12 can cause a form on anaemia and that would result in the tiredness. Could you ask your GP to check what your levels are like now - and to check for anaemia ?


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## Liz! (Jan 7, 2011)

I am astonished. 

Do you mean the newest surgery has not called back, or PALS? 

Have you tried the surgery your friend who has treatment visits?

I would go to whichever surgery you feel most comfortable with and ask for blood tests at the time of when you have symptoms to confirm that the B12 is deficient at that time.
I would also have a diary to show to the Dr what symptoms you have and when they are clear and when they are not, to correlate. Be scientific about it, Drs are logical. 

I feel terrible for you. i know when you don't feel well and have no energy you will find any step difficult to take. Do you perhaps ahve a friend who could come in with you and give you moral support?


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## Northerner (Jan 7, 2011)

Hi, I have moved this discussion to it's own thread for clarity


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## AndyS (Jan 8, 2011)

Hi Liz, Margie, Northerner

Sorry I started a threat the other day and just seemed to disappear.

My Mum took really ill and sadly this morning passed away.

I promise to reply soon,

Andy xx


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## Steff (Jan 8, 2011)

AndyS said:


> Hi Liz, Margie, Northerner
> 
> Sorry I started a threat the other day and just seemed to disappear.
> 
> ...



Andy so sorry to hear your sad news. x take care of yourself X


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## margie (Jan 8, 2011)

AndyS said:


> Hi Liz, Margie, Northerner
> 
> Sorry I started a threat the other day and just seemed to disappear.
> 
> ...



Andy take your time - you must be in shock right now and need time to process your Mum's passing.  Hope you can remember the good times you shared.

Take care of yourself and sending you my condolences.


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## Northerner (Jan 8, 2011)

Oh Andy, I'm so sorry to hear your news.   My deepest condolences.


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## David H (Jan 8, 2011)

AndyS said:


> For about 5 years I have had horrendous problems due to vitamin B12 deficiency.
> 
> I could probably write a few hundred pages on experience but would end up in tears with frustration.
> 
> ...



Andy have you investigated the possibility of Gluten Intolerance or Coeliac Disease.

http://www.cks.nhs.uk/patient_information_leaflet/coeliac_disease/symptoms

Oral canker sores
Vitamin B12 deficientcy
Anemia
Chronic Fatigue
Brain Fog (unable to concentrate)
weight gain or loss (depending on manifestation of symptoms)
flatulence (farting to you and I)
loose bowel movements or constipation (depending on manifestation of symptoms)
Headache or Migraine (with or without aura)
painful joints

The list goes on and on.
No harm in ruling it out with a simple blood test.

Best Regards,
David


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## AndyS (Jan 8, 2011)

Steffie said:


> Andy so sorry to hear your sad news. x take care of yourself X



Hi Steffie

Thank you so much x


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## AndyS (Jan 8, 2011)

margie said:


> Andy take your time - you must be in shock right now and need time to process your Mum's passing.  Hope you can remember the good times you shared.
> 
> Take care of yourself and sending you my condolences.



Hi Margie

Thank you so much

Andy xx


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## AndyS (Jan 8, 2011)

Northerner said:


> Oh Andy, I'm so sorry to hear your news.   My deepest condolences.



Hi Alan

Thank you for the condolences.  I think I'm still in shock.

Best regards

Andy


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## Northerner (Jan 8, 2011)

AndyS said:


> Hi Alan
> 
> Thank you for the condolences.  I think I'm still in shock.
> 
> ...



I think it will take some time to sink in, especially as it sounds to have been so sudden. Take care, and try to remember the good memories you have of her.


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## David H (Jan 8, 2011)

Andy, 
Condolences, please forgive me I didn't read all the way through the postings.

David


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## alisonz (Jan 8, 2011)

Ahhhhh Andy so sorry to hear your sad news. Thoughts and much love is with you at this sad time xx


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## Mummyt (Jan 8, 2011)

Andy - So sorry to hear of you sad news ...Its hard I know but please take care, you are in my thoughts 
Hugs Mo xx


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## AndyS (Jan 9, 2011)

Hi DavidH - not problem at all, and when things settle down at home I will look into that.

Thanks Alisonz and Mo for your kind words too xx

Regards
Andy


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## tracey w (Jan 9, 2011)

Just seen this,

Andy so sorry for your loss, take care x


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## KateR (Jan 9, 2011)

So sorry to hear your sad news. My deepest condolences.


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## AndyS (Jan 9, 2011)

tracey w said:


> Just seen this,
> 
> Andy so sorry for your loss, take care x



Hi Tracey

Thank you so much, means a lot.

Andy xx


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## Sheilagh1958 (Jan 9, 2011)

So sorry for your loss Andy


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## traceycat (Jan 10, 2011)

just saw this andy, very sorry to hear about your loss, take care.


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## AndyS (Jan 23, 2011)

Hi Everyone

Just a quick message to thank you all for your kind words of condolences.

Your messages really meant a lot to me and I promise to come back on here more often once life starts to return to normal.

In the meantime thank you all so much.

Andy xx


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## Liz! (Jan 23, 2011)

Oh Andy, so sorry to hear this. Take care.


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## Flutterby (Jan 23, 2011)

Really sorry to hear your news Andy, big hugs.xx


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## AndyS (Apr 10, 2011)

Guys thank you for all your messages.  Looking back at this post I missed a couple of replies.

After Mum passed away in January, a few weeks ago a close family member was murdered so trying to get life back to something like normal.

Thanks again.

Andy xx


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## Blythespirit (Apr 10, 2011)

Hi Andy. I'm sorry I didn't see this thread before but I only joined here last month. Please accept my deepest sympathy and condolences for the loss of your mum, also for the loss of your other family member. I can't imagine how you must be feeling right now. Take care. Sending you hugs and much love. XXXXX


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## margie (Apr 10, 2011)

Oh Andy I am so sorry to hear of your beravements. I can't imagine what you are going through - to lose someone in such circumstances must be very traumatic.

Take as much time as you need - and maybe consider talking to someone as you must have intense feelings towards the person responsible.

Sending you lots of virtual hug.


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## am64 (Apr 10, 2011)

AndyS said:


> Guys thank you for all your messages.  Looking back at this post I missed a couple of replies.
> 
> After Mum passed away in January, a few weeks ago a close family member was murdered so trying to get life back to something like normal.
> 
> ...



sorry to hear this ..keep strong x


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## Natalie123 (Apr 11, 2011)

Hi Andy, I'm really sorry to hear this. I can't imagine how you must be feeling now, I just wanted to say sorry and my thoughts are with you. Lots of hugs xxx


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## AlisonM (Apr 11, 2011)

I'm so sorry to hear this news Andy, I had missed the orginal thread and so apologise for coming to it so late. I'm sorry for your losses.

Did you ever get anywhere with the surgery over the B12 injections?


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## AndyS (Apr 11, 2011)

Thank you all so much xxx

I never got anywhere with the B12 injections Alison, still have them every 3 months.

The last few months have been so horrendous I gave up and admitted defeat.

I was prescribed Gabaptentin for neurotherapy in my gums but didn't tolerate it very well so been prescribed codine (15mg) to help with the pain, problem is I am in pain so taking the codine and run out before the end of the month.

Andy xx


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## Alan S (Apr 12, 2011)

AndyS said:


> For about 5 years I have had horrendous problems due to vitamin B12 deficiency.
> 
> I could probably write a few hundred pages on experience but would end up in tears with frustration.
> 
> ...




I'm late because I only just saw this thread. I wish I could help, that doesn't sound good. Supplemental B12 always has some problems.

Forgive me if this is all old news to you; I haven't had time to read all the answers. A couple of lateral questions.

Do you take metformin? Read *Risk Factors of Vitamin B12 Deficiency in Patients Receiving Metformin * to see why I ask and *Increased intake of calcium reverses vitamin B12 malabsorption induced by metformin* for one possible assistance.

Over the past five years have you cut back on red meats or seafood? Read this to see why that is relevant: *Vitamin B-12 sorted by nutrient content*. Possibly a reduction in grains is part of the problem but, as you can see, there are better food forms of B12 for diabetics.


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