B12 Injections

[skalexander]

I know there's lots of us here with B12 issues, and just wondered if anyone else has found themselves in the same boat...

I've got a history of B12 deficiency since around 2012. Between 2012 and 2016, I took tablets, but my levels were still low. In April 2016, my level went below 90, and my GP put me on loading doses and then injections every 12 weeks, and said that was how it would be going forward.

I was due my injection 5 weeks ago, but couldn't have it due to Covid-19. I called the GP this week, as things are slowly opening up here, and they told me I had to have a blood test to see if I still needed it. Lo and behold, my level is 1263 and they've said they won't offer me injections anymore.

Obviously my levels are fine now, but my worry is they will decline and I will end up back where I started. I was previously tested for pernicious anaemia which was negative, but there's no doubt I struggle to maintain B12 levels on my own.

Has anyone been in the same position? Any advice for me?

[DisneyWannabe]

I was diagnosed last year with a non-dietary B12 deficiency, but still had a battle to get regular injections due to my GP interpreting the NICE guidelines (which incidentally states no more blood tests after treatment begins as they are false) in his own way and insisting another blood test which showed my level to be over 700 despite no injection for 2 months.
Was quite poorly for most of last year until seeing the Haemaologist in November who has stated I have Pernicious Anaemia (despite negative Intrinsic Factor) so have injection every 8 weeks for life.

I had started to worry it would be cancelled with all this going on (especially as a forum on FB I am part of were having lots cancelled) but thankfully mine has gone ahead as normal.

If your deficiency is NOT dietary then you need those injections as although there will be B12 in your blood serum it will not all be active and therefore you will still be deficient. Tablets won't work either as your body will not be able to convert the tablet through the digestive system into a form of B12 you can actually use.

Please challenge this if its not dietary as it can actually be fatal.

[skalexander]

Originally Posted by DisneyWannabe

I was diagnosed last year with a non-dietary B12 deficiency, but still had a battle to get regular injections due to my GP interpreting the NICE guidelines (which incidentally states no more blood tests after treatment begins as they are false) in his own way and insisting another blood test which showed my level to be over 700 despite no injection for 2 months.
Was quite poorly for most of last year until seeing the Haemaologist in November who has stated I have Pernicious Anaemia (despite negative Intrinsic Factor) so have injection every 8 weeks for life.

I had started to worry it would be cancelled with all this going on (especially as a forum on FB I am part of were having lots cancelled) but thankfully mine has gone ahead as normal.

If your deficiency is NOT dietary then you need those injections as although there will be B12 in your blood serum it will not all be active and therefore you will still be deficient. Tablets won't work either as your body will not be able to convert the tablet through the digestive system into a form of B12 you can actually use.

Please challenge this if its not dietary as it can actually be fatal.

See more...

As I said in my post, I tested negative for pernicious anaemia.

[meggy]

Not much help I am sure, but mum has the 12 weekly injection top ups and she was advised surgery were not giving them at the moment and all patients were being advised to buy b12 tablets! She takes 1 a day and told to have a blood test in 6 months to ensure levels are ok!

Her tablets were from Holland and barest, or boots.

[Mr Tom Morrow]

Originally Posted by meggy

Not much help I am sure, but mum has the 12 weekly injection top ups and she was advised surgery were not giving them at the moment and all patients were being advised to buy b12 tablets! She takes 1 a day and told to have a blood test in 6 months to ensure levels are ok!

Her tablets were from Holland and barest, or boots.

See more...

My Daughter has the injections every 6 weeks. If she doesn’t she loses all feelings in her hands and struggles to speak properly.

The GP said they were halting them. Big mistake as I trained her well. They administered it reluctantly and will continue to do so however she is now on a mission to get them to approve her to self inject. She will win I know.

[shez]

Originally Posted by Mr Tom Morrow

My Daughter has the injections every 6 weeks. If she doesn’t she loses all feelings in her hands and struggles to speak properly.

The GP said they were halting them. Big mistake as I trained her well. They administered it reluctantly and will continue to do so however she is now on a mission to get them to approve her to self inject. She will win I know.

See more...

I self inject myself with b12 every 8 weeks at the moment and that is being reviewed to potentially change to 6 weeks. It’s easy to do and I inject in my thigh. Hope your daughter gets the backing of her Gp as it’s so much easier to do myself.

[Orlando 2004]

I was on B12 injections from about September 2018. I had my last injection at the end of February so not long before lockdown and had my bloods done in the same day before the injection. I even asked for other bloods to be done as I was still fatigued. I do have MS so that probably doesn't help. I'm not sure what my level was so will check sometime but when I phoned for my blood test results they said they were all satisfactory. I then spoke to a doctor during lockdown and he said that the injections give some people with MS a boost but if I'm not feeling the benefit there is no medical need for me to have it. He did say I could take tablets so I have bought timed release tablets from Holland and Barrett to try. I was advised to get back in touch if I felt I needed to go back on injections. I hope you can get something sorted, I think my surgery are still doing injections for some.

[soooexcited!]

How long ago was your last injection? Only reason I ask is that a blood test taken on a treated person will generally show a higher level. Doesnt mean it should necessarily be stopped just that it's a treated response blood test.

[skalexander]

Originally Posted by soooexcited!

How long ago was your last injection? Only reason I ask is that a blood test taken on a treated person will generally show a higher level. Doesnt mean it should necessarily be stopped just that it's a treated response blood test.

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End of January.

[DisneyWannabe]

Originally Posted by skalexander

As I said in my post, I tested negative for pernicious anaemia.

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That would be the Intrinsic Factor test, this is only 60% accurate - mine too was negative (as in my post). NICE guidelines state that even with a negative IF test that if no dietary issues are identified you should be treated as having Pernicious Anaemia.

My Haematologist confirmed the above.

Hope you get what you need.