B12 Deficiency is making life so diff... - Pernicious Anaemi...

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B12 Deficiency is making life so difficult, please help?

haeleigh90 profile image

Hello

I hope this is the right place to post, I was diagnosed with a B12 deficiency last year and given the loading dose by the GP, I've noticed that for a brief period of time they helped but then my severe symptoms came back with a vengeance and I can't cope with them anymore.

I was wrongly diagnosed and palmed off with prescription painkillers at first.

I'm currently waiting for blood results to come.back but my last year showed low levels of 102.

Can anyone please point me in the right direction of buying the intramuscular injections myself? I have a 3 year old and cannot carry on living like this 😢

11 Replies
clivealive profile image
clivealiveForum Support

Hi haeleigh90

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

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your 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...

Also please ask your to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

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.

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

I wish you well.

Thank you so much for replying, I thought I would post here as I know so many of you lovely people suffer yourselves.

I feel like GP's don't listen much when it comes to the B12 which is quite frustrating.

My folate levels have always been low, since I was a young child, I have tried numerous time through my diet to incorporate more items that are high in folate but for some reason it doesn't seem to help.

I did start taking folate tablets but they caused me some issues with my stomach (currently awaiting gallbladder removal) so I stopped taking them.

I have an appt to see my GP tomorrow morning to discuss potentially having the 3 monthly jabs a bit more frequently and also have my 3 monthly jab booked for after the appt so with any luck I may start to feel slightly more human again.

I will do as you suggested and take my partner with me in the morning as he's the only one who sees how severe the symptoms can be and sees how it affects me daily. I shall also write a list of symptoms I'm suffering and with any luck I may get them a bit more regularly.

I was diagnosed back in December 17 but no one picked it up till March 18. I've been having the symptoms for around 18 months possibly longer, I just put them down to having a toddler who wore me out but it's getting worse and he's getting better as he's getting older.

Is it advisable to take B12 tablets from the vitamin counter of a supermarket? Just trying to think of ways of boosting my levels when the injections stop having an effect.

Thanks again for your reply ☺

clivealive profile image
clivealiveForum Support in reply to haeleigh90

Personally I use a B12 Boost Spray which can be bought online or from local health food stores and as for Folate try to eat more leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas beans etc. Folic acid is also being fortified into breakfast cereals.

Sadly many of us have come across "one size fits all" doctors but it simply isn't true.

Others have rightly commented on high serum B12 results from tests which are pointless doing after injections - unless they are low

I hope it goes well tomorrow, please let us know.

Are you receiving injections now? Every three months?

If not demand you get proper treatment as given in he British National Formulary. Here’s a document from one NHS trust describing how people like you should be treated: hey.nhs.uk/wp/wp-content/up...

Don’t go down the self-injecting route until after your next blood test (which will be pointless if you are on injections - see the HEY document above).

If you do decide to self-inject here’s a post I wrote a few days ago...

healthunlocked.com/pasoc/po...

Best of luck.

haeleigh90 profile image
haeleigh90 in reply to fbirder

I have had the loading dose and due the 3 monthly jab tomorrow.

I've had my blood results back and they say my B12 serum level is up from 102 to 558 which is a huge jump so I doubt I'll be allowed them more frequently than the 3 monthly reccomended dose.

I've suffered with anaemia since a young child and my last blood work stated the levels were very low and now they've come back clear so I'm really confused as I haven't changed anything.

I don't want to self inject if I can help it (hate needles) but I'm really struggling to get through each day and it's really affecting my mental health 😢

My son is suffering due to my lack of being normal mummy and it's really getting me down.

I have an appointment with the GP tomorrow and my 3 monthly jab is happening tomorrow too so hopefully that helps.

Thank you so much for your reply, it's very much appreciated ☺

fbirder profile image
fbirder in reply to haeleigh90

Any blood results for B12 are pointless once injections have been started. It says in the HEY document.

It’s strange how doctors who are supposed to be saving every penny still insist on pointless tests.

spacey1 profile image
spacey1 in reply to fbirder

Also, 558 is a huge jump, but not that huge for someone who has supplemented. Last time mine were checked, they were over 2000!

Gambit62 profile image
Gambit62Administrator in reply to haeleigh90

after the loading shots your B12 would have been off the range - and it has now fallen to 558. Whilst it may now be in normal range that doesn't mean that you are okay. injections fundamentally change the parameters and makes the results of the serum B12 test more or less useless as a proxy measure for what is happening in your cells. on average people who have had injections need to keep serum B12 levels above 1000 - but that is an average that covers situations like my own - where I need to keep it well above the measurable range - to others who are perfectly fine well into the normal range.

Serum B12 measures the amount in your blood - not whether it is getting into or how well it is being used in your cells. Its a reasonable test for diagnosing a problem absorbing B12 from your diet but has several significant logical flaws if it is being used to manage B12 levels post injections - or even post high dose oral supplements.

I have had some relief between injections by using a B12 patch that goes behind the ear. I don't use them unless I start getting many symptoms. Once I start I use one every day until my next injection. They 're not as helpful as the injections, but they do help, especially with brain fog. 558 is not that high for a B12 reading if you are getting doses at the clinic, even if it is an improvement for you.

Good luck with this. You have had a long weary struggle to get adequate relief.

Hi i feel for you i have an 8 and 1 year old sons it takes soo much energy to cope. This can be a very difficult time in life for all moms with all the exhaustion try not to be so hard on yourself. I am currently self injecting very frequently and it has made a huge difference in my ability to cope and just enjoy the day to day hectic pace. I really hope you find the treatment that works best for you soon:)

You say, haeleigh90, you don't fancy self injections, well I would hazard a guess there aren't many people who would disagree with that. In fact I suspect, given our druthers, there would be very few who would relish visiting the surgery more regularly to have the nurse do it either. Once you get over the thought of doing it and consider the benefit to you then it doesn't seem so bad. I did think perhaps I should self inject yesterday evening and then persuaded myself things weren't too bad, I could cope with the burning toes and the pins and needles in my hands and the slight tinitus, so I didn't do it but I am now certain I will be getting the injection kit ready this evening. This is, at the moment, a weekly thing and the benefit of a week without stinging toes and hands and not such a dry mouth and wine tasting almost nice is well worth the inconvenience of the injection; it takes just a few minutes and makes all the difference to life. It costs just a few pence, 50 for the ampoule and 17 for the kit. No bother with appointments and life is almost normal again.

It's that first one on your own which is the worst. I was asked after the second loading dose if I fancied doing it myself and agreed as my daughter had been doing so for many years after having had such great difficulty getting appointments for hers at the surgery. The practice nurse showed me what to do and watched as I did it then the next one she just watched and then handed over the kit for the rest of them. I got a serious shake in the hand when I first got prepared for going truly solo but a swift talking to myself and a very successful, painless injection afterwards and away I went.

So many others have joined this forum and felt the same as you then with encouragement taken the tools in their own hands and took control of their health. I hope you are able to join us and it is nowhere near as hard as you think right now.

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