Pernicious Anaemia Society
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2 months after loading doses

Hi. I wrote on here about 2 months ago as i'd just been told I had a b12 level of 88. I hadn't heard of b12 deficiency so I came here to get advice and it was brilliant - thank you.

I was really hoping to see improvements after the 6 injections but I am still struggling. Certain things have changed - my appetite has improved , my periods are more sorted and I've started getting many spots (not so positive). But I still feel extremely low and extremely tired. I am 36, work full time as a teacher, fit, active and have 2 young children. I am struggling to get through each day and I was really hoping this was my key to getting my life back on track.

My question is can I be tested again for b12 or will it be skewed due to the loading doses. Something isn't right, I cry every day (which isn't like me), fall asleep on the sofa every night and I don't know if it's this issue or something else.

Any advice would be appreciated.

Thank you :-)

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Hi Eltoness,

Sorry to hear you're not feeling good, and your life sounds too busy for that!

How long since your last injection?

It could be just that you're running low again.

Did you ever work out why you were low in B12 in the first place? e.g. vegan, coeliac etc?

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Thank you for your reply. They didn't look into why I was deficient and to be honest I just assumed it would sort itself out and just accepted the injections. I am a meat eater so don't think it's my diet.

I am due my next injection in about a month. It's 2 months since I had the 6 injections. I really was hoping to feel like my old self. Maybe I need to give it more time?

Thanks again.

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Since you know of no obvious reasons why you can't gain B12 from your food, it seems likely you are going to need ongoing injections. And many people find that every three months is simply not enough, especially in the recovery phase, and especially when starting from very low levels as you are.

Why don't you try asking for another course of loading doses? If you notice an improvement again, then that's a clue that you're on the right track. I think GPs think that one course of six injections and then every three months is enough for everyone. That is simply not the case.

Of course you may have other issues and deficiencies going on as well. What else has your GP tested? Have you got a printout of the test results? If so, you can put them on here.

In answer to your question about testing again, you can be, but I think it could still be skewed by the loading doses. The proper practice, once injections are started, is to keep giving them. And if you still have symptoms, it's worth asking for more frequent injections again. The stuff is so cheap and so safe, it's hard to understand why it's so difficult to come by on the NHS.

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Hi Eltoness

The pimples/acne, is likely to be caused by microbes on your skin reacting to the additional B12 by producing substances that your skin is then reacting to. In theory this could be resolved by use of a good skin wash. You might have better luck talking to your pharmacist and seeing what they can recommend prior to your next maintenance shot.

Testing B12 after treatment has started is not much use unless it comes back very low and several weeks have elapsed since the last injection.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Make a list of your neurological symptoms and present this to your doctor and ask him to treat you according to those symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for 46 years.

I wish you well

.

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Thank you for all the information, it's really useful. Will definitely ask for my folate level to be checked. Thanks again.

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Hi Eltoness. It’s sounds very much as if your B12 deficiency is being under-treated.

As clivealive says in his reply above, those who have neurological symptoms should be treated with a much more intensive regime of B12 injections - following the loading doses, the treatment regime is injections every other day until no further improvement - sometimes for many months. Not many GP's have heard of this.

This is then followed by a maintnance injection every eight weeks (though this is not enough for some people - but that's another story 😉).

It sounds as if your GP has mistakenly put you on the maintenance regime for those without neurolgical symptoms, so there is a missed step in your treatment (the every other day until no further improvement 'bit').

Suggest you print out the guidelines Clivealive has given you the link for, return to your GP, and ask him to treat you according to the guidelines for those with neurological symptoms.

Also - here's a link to the British National Formulary (BNF) which gives prescribing information for those with neurolgical symptoms (about the third paragraph down).

Note: the BNF guidelines refer to the treatment of Pernicious Anaemia (PA). However, whether or not you have pernicious anaemia is a moot point. The treatment for PA is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficency is the same - whatever the cause.

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

And here's a more treatment detailed guideline - your GP should be working to this guideline:

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of Cobalamin (B12) and Folate Disorders)

And here's something else about the importance of intensive B12 injections for those with neurological symptoms (in case your GP needs more evidence).

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms).

Your B12 levels were very low when you were diagnosed so I'm not surprised that you're still feeling very ill - even after the loading doses. It might help to know that once the right frequency of injections is given, improvements do happen - though this can take some time if the deficiency has been present for a long while (and your will,have been with levels that low). So take heart that things can get better.

As you've already found out, GP's are not always well-informed about B12 deficency and pernicious anaemia so presenting evidence along with a request for the proper treatment, often works (though not always). But if this doesn’t work, the next step is to write to your GP so...

If your GP refuses to prescribe the neurolgical regime of injections please post again for further advice.

Good luck.

👍

P.s. your GP may suggest testing your B12 levels again and then may well insist that you have enough B12 because the level will be high. This is nonsense - the level will only be high because you have had injections. All the guidelines state that once treatment has commenced testing B12 levels is meaningless (see BSCH guidelines in link above). gP should trust according to symptoms- not serum B12 levels. If you meet this issue with your GP, we can post more evidence to help. 😉

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Just wanted to thank you for taking the time to write down all the information and advice you've given me. I really appreciate it. I only saw a nurse and she tested my blood and just put me on the loading doses and told me I'd need one every 12 weeks from then on. It sounded so simple but from all I've read on here that doesn't always seem to be the case!

Thank you again :-)

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No problem Eltoness. GP's and nurses are often not very well informed about B12 deficency and PA - as you're finding out 😉.

Hope the information helps you to get the treatment you need (that is, treatment according to the guidelines).

Best of luck and pop back if you need more help.

👍

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Hi Eltoness my 5 loading injections did nothing for me. It was only after quite a few more that I improved. Like you I had to wait 3 months and then found I was getting a retest not an injection.

GP's seem to know little about B12 deficiency and some do not follow guidelines, ignoring neurological symptoms (for which injections should continue every second day until symptoms stop improving)

You could ask for injections closer together, if refused them make your own arrangements as many of us have had to.

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Thank you for your reply. It is good to hear you don't always feel the benefit after the first set of injections. I will keep waiting and be patient! Thanks for the advice

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My dr wasn't interested in treating my low B12 , which was 198, so I self injected. It took at least 6 injections ( alternate days) to stop some of the worst symptoms. The tinnitus and hand tremor stopped. But I kept injecting every three days for another few weeks, then every 4 th day and so on, until all the symptoms stopped. It took about 3 months of this intensive treatment.

I still do an injection once a month as I find symptoms start to return if I don't.

I think you need to take the guidelines to your GP as you need more frequent injections until your symptoms stop.

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Thank you. I think I will book an appointment with a gp as I've only seen a nurse and see if they can give me them more frequently.

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I've been quaffing oral b 12 , b9 supplements everyday for three months. I don't know how i would have improved without daily intake.

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