Thanks for letting me join: Not long... - Pernicious Anaemi...

Pernicious Anaemia Society
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Thanks for letting me join

Not long since I had my 6 loading injections but can't say I feel much different. I bought some B12 ampoules from Spain and am self injecting. I'm also taking methyl folate, magnesium, D3 and co enzyme Q10. I'm not as sleepy as I was but the aching legs aren't much improved. So four months on I'm disappointed, is this just me or does it take a while to feel much better? Thanks in advance for any tips or advice

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Hi Fred2005 You are very welcome to be on here and to ask as many questions as you like as there are some very knowledgeable folk who will be able to give you good advice.

Are you in the U.K. and what form of B12 are you having - Methyl, Hydroxo or Cyanocobamalin?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

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Hi Clive and thanks for your information. I'm in the Uk. The doctor prescribed me cyanocobalamin but the version I bought in Spain was the other one. I asked on a Facebook group and think you can use either. Hope that's right. I've been doing the hydroxy one weekly and also take a multi B vitamin as well as all the other stuff I mentioned.

I'm just sad that I don't feel like myself anymore. Just feel tired, old, fed up and even saying no to holidays. I hate the change in my personality and am just an old misery!! I went to the doc's to ask for a thyroid function test because I felt similar to when I found out I had underactive thyroid, thought I needed a bigger dose of thyroxine.

Anyway you give me how that I'll feel better soon, so thanks very much for your help.

You'll be an expert after suffering for many years from B12 deficiency!

Thanks again, Sue (couldn't put my real user name as it's already taken) Fed was a beloved old dog 😬

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Hi , it looks like your doing everything right , unfortunately it takes a long time to get better , as you could have been deficient for years . Keep on doing what your doing and you’ll get there slowly . Prehaps you could increase your injections and folic acid . It may be worth having your ferritin level checked as docs say normal when the level is droppping or on low side .your ferritin needs to be at least 60 to help with b12 . Hope this helps , take care .

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Hi and thanks for your help and advice. I'm seeing the nurse in January and I'll ask if I can have my ferritin level tested.

I'm relieved to hear that it can take a while to feel better. I'm keeping going with the weekly injections etc. And hope I'll be feeling more lively soon.

I appreciate your help,

Sue

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When you say "The doctor prescribed me cyanocobalamin" and you are in the U.K. - that surprised me as hydroxocobamalin is now the form of injections used. Or - were you referring to to cyanocobamalin supplements in the form of tablets were prescribed after the six loading doses?

It is quite safe to "mix and match" between the three forms of the injections as the amounts of (say) 1mg cobamalin in each will be the same - it's just the "fluid" it is based in that is different.

Thanks for your kind thoughts - I'm no "expert" but am still "clivealive" aged 77.

Be sure to give Fred a juicy bone from me :)

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Sorry brain fog! Doc in UK, well the practising nurse rather, prescribed the Hydroxocobalamin! The stuff I bought in Spain is cyanocobalamin. Do you know if it's ok to use the Spanish one in between using the Hydroxocobalamin? I'm supposed to have that 3 monthly but read about lots of people self injecting, so I've been doing that with the cyanocobalamin, in my thigh every week

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Re read your reply and it looks like I'm not doing wrong thank goodness. My sister is in Fuerteventura and going to bring me more supplies! She's just retired from being a community nurse and is a lot kinder giving me Jabs than I do for myself.

Sadly Fred died a couple of years ago but I still buy bones for my granddogs! 😜 Thanks for helping again, Sue. You're living proof that B12 liveable with

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The main difference between hydroxo and cyano is that "maintenance" injections are every 4 weeks instead of 8 or 12 weeks.

Your surgery has scheduled you to have maintenance injections of hydroxo every 12 weeks.

Take care now.

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Hi!

I guessed it was probably this way round.

Everyone is different and some people get different reactions to different things.

I personally do well with hydroxocobalamin (albeit on 1.5mg every day) but found cyanocobalamin didn't make any difference to me - while some people like Clive do better on it.

There are lots of things that work in conjunction with the B12 and many people find a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron are needed to make the B12 work well.

There is a B12 "Communal Chat" group which has lots of long term B12d sufferers as members. It provides support and inspiration - people with the problems do have to make changes and we have to manage everything carefully but it is possible to live reasonable lives with enough of the right treatment for each individual.

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