I recently joined healthunlocked and posted regarding my lack of B12 injections since turning 50 5 years ago. I saw my doctor a couple of weeks ago and explained my symptoms etc. He sent me for blood tests and it turns out I had low folate levels so I’m now taking prescribed folic acid daily. Still no B12 injections though and I feel worse than ever! I’ve no energy and fall asleep in the afternoon and again by 8 pm most nights. I struggle to get out of bed each morning even with 10 hours sleep. I also have hypothyroidism and take levothyroxine daily. My main symptoms are :
Tinnitus, constant sore and burning tongue, recurring mouth ulcers, no sense of taste or smell, lack of energy, lump in back of throat, recurrent sharp earache of short duration in either ear, any clue what’s going on?
Folic acid isn’t making any difference so far I fact I feel worse!
As you have PA you will feel worse than ever if you haven’t been receiving your B12 injections.
I see that you had replies to your previous post which gave very good suggestions for action to take, for example, joining the pernicious anaemia society.
Did you take this and other actions suggested and if so, how did you get on?
Hi yes I am a member of the PA society and mentioned this to my GP at my last visit and that it is their opinion that B12 injections should not be stopped at age 50. He made no comment but agreed to a range of blood tests. He has not agreed to reinstate the B12 but I am now on folic acid. Other than change GP what else can I do? I value the support of others on here but on a practical level how do I make my GP agree to reinstate the injections when he doesn’t think the blood test results prove I need them? I feel like I am banging my head against a brick wall. How do you prove to someone how awful you feel when you can’t show any physical symptoms? I know my pain is real, as is my tinnitus and burning tongue and loss of taste and smell, but convincing my doctor is an uphill battle.
Hi Hidden as you were diagnosed with P.A. five years or so ago your B12 injections should continue for life and any doctor worth his salt would know that.
When your Folate was tested recently was the B12 level done at the same time because if you are deficient in that giving you folic acid was the wrong thing to do.
Have a read of the links below and if possible print off the relevant paragraphs such as:
"Giving Folate to a B12 deficient person without B12 can lead to an irreversible exacerbation in neurological features"
"Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit".
This may help you (same guidance as in the BNF) see:
The British National Formulary (Section 9.1.2 Drugs used in megaloblastic anaemias) states
"Folic acid has few indications for long-term therapy since most causes of folate deficiency are self-limiting or will yield to a short course of treatment. It should not be used in undiagnosed megaloblastic anaemia unless vitamin B12 is administered concurrently otherwise neuropathy may be precipitated".
Useful summary contains above advice plus guidelines for B12 injections/supplements.
Thank you so much for your sound advice. I am a member of the PA society. I think I need to be braver when talking to my GP and be more persistent. Only I know how I feel, but I do feel that as nothing is visible I am dismissed too quickly and made to feel I am making a fuss about nothing. I now only work 4 hours a day, have no social life and go to bed before 9 pm most nights. I live by myself and I am beginning to feel increasingly isolated and alone. How do I make my GP listen, understand and take me seriously?
Hopefullyyours. To put it bluntly, your GP is an idiot. Once a diagnosis of PA has been made, as others have said, injections should continue for life. No further testing is necessary so goodness only knows what your GP thinks he's doing....or looking for! Your GP is being negligent - to the extreme!
I suggest your telephone the PAS and speak to Martyn Hooper (if the helpline answerphone is on, leave you name and telephone number and Martyn will ring you back as soon as he's back in the office).
Martyn will be able to intervene with your GP on your behalf and has been successful (many times) at getting B12 injections re-instated for those in a similar situation.
The other option is to formally write to your GP and request that injections are re-instated, including evidence from guidelines etc...but that's a much more complex process and takes a lot longer. Martyn usually does the trick with one phone call...and you won't have to,worry about being brave or persistent 'cause he'll be those things for you...and your GP will have to listen 'cause Martyn carries the authority of a recognised and respected charity (much harder to ignore then a mere patient).
Please do ring Martyn...it's a service he regularly provides for PAS members.
I'm the same I'm just under 46 and took medical retirement after 30 years in same job my symptoms got worse and all started with b12 just keep mythering you're doctor to see a speclist 18 mths on I still feel terrable if not worse I've just had a CT scan waiting for results I've developed M E and nerve damage but the specilist is confident I'll get better within a year I wish you well
So sorry yo hear you are struggling too. I am going to ask for a referral to a specialist as I am sick and tired (!) of feeling like this and not prepared to put up with it any longer. It seems my GP looks a test results only and does not take into consideration how a patient actually feels/presents.
Thank you for your kind words and good luck with your recovery.
Hello, in your case with your frankly negligent GP, Please take the great advice of Foggyme & others, and just take it straight to the "Top" by contacting Martyn Hooper.
Don't waste time, as I fear that you'll find it almost impossible to persuade such a GP to refer by yourself.
Also, without a starting point of a provisional diagnosis of B12 deficiency, even a referral to a 'specialist ' can be disappointing.
I was referred, but the hospital consultants opening words were, "Of course, I know NOTHING about B12 deficiency" !!I
I basically had to convince him to to allow me a trial of injections, using the info I'd armed myself with from this forum. I was feeling so ill, I think he realised that I wouldn't be leaving his consulting room unless I got some answers ...
I have found out the hard way that you have to be really firm with health professionals and be prepared to fight for your own health.
It shouldn't be like this, but that is in part why we all end up writing on here.
However please try not to be despondent & don't give up !
Help is out there !
I really wish you all the very best & hope you're feeling better soon.
Thank you for your support. Part of my problem is that I was diagnosed with PA and hypothyroidism and high cholesterol all at the same time. I’ve never known which symptoms belong to which diagnosis. I started on B12 injections and levothyroxine and statins but the injections just stopped at age 50 as my previous GP said you don’t need them after the age of 50. The statins stopped when my cholesterol level came down but it’s now back up to near 6. I didn’t think to question him then but have been feeling increasingly unwell. I now have low folate , burning tongue, recurrent mouth ulcers, tinnitus, no sense of smell or taste, lump in my throat, freezing cold hands and feet, brain fog and virtually no short term memory. I keep telling my GP but nothing is really done. He tried me on amitriptyline for my burning tongue but that didn’t help. So I’m now in folic acid and levothyroxine but feel as bad, if not worse than ever.
I saw a different person last summer with a list of my symptoms and was dismissed entirely and told it was all linked to the menopause which I’ve now proved was wrong. However, that resulted in me being prescribed with the wrong medication which led to me having to have an investigation under general anaesthetic and months of worry
that I may have cancer.
I’m quite frankly at the end of my tether. I’m frightened that if I get the PAS involved and in particular, Martyn Hooper, that this will somehow be held against me at the surgery. I want to see a specialist but don’t know the best way forward .
Hopefullyyours...Just a further comment about getting Martyn Hooper involved...once he has spoken to your GP or the practice manager, they will be in no doubt that by withdrawing your injections of B12 they are exposing you to the possibility of potentially irreversible neurological damage...and acting against ALL medical guidelines for the treatment of Pernicious Anaemia.
Withdrawing the B12 injections of someone with PA because they reach 50 and no longer need them is the most nonsensical thing I've read here...and negligent to the extreme...
Once this has been point out your GP will be aware that he (and the surgery that employs him)...may be held accountable for what is clearly a negligent act.
So...they will should want to call you in as soon as possible to rectify this...and they ought to want to treat you extremely kindly in the process...cause you have grounds to peruse them for negligence if you so wish. And you'd win, cause they are going against ALL medical guidelines...there are no grounds whatsoever for them to withhold you injections.
In addition (in case you don't know) treating with folic acid in the presence of unrectified B12 deficiency can cause neurotically damage to progress unabated...so the lower your B12 levels become (and they surely will) the higher the risk of neurologically damage.
Seeing a specialist is not the best way forward in terms of speedy acces to treatment. The fact of the matter is you already have a diagnosis...PA...and you GP is willfully and negligently ignoring the prescribed (and only) treatment for that condition. And the delays incurred whilst waiting for appointments...
However...if you are able to see a gastroenterologist privately and explain that you have been diagnosed with PA but your GP has now withdrawn your life-long injections because you've reached 50...the gastroenterologist should be appalled and write immediately to your GP asking for your injections to be re-instated. However...and here's the difficulty...no GP is obliged to follow the treatment recommendations given by any consultant (shocking)...so your GP can still refuse to recommence your injections.
And that's why contacting Martyn Hooper is the best and quickest option...if necessary, Martyn can escalate this beyond your GP, if necessary...and it won't reflect directly or badly on you, because a charity is taking this action (not you).
Sorry to have to be so blunt but...you really need to take action now...the longer this continues the more at risk you are of becoming neurologically damaged.
Other options...see a different doctor or change surgeries...or start to self-inject B12 whilst this sorry mess is being dealt with.
Please don't delay any longer...I bet you feel really ill by now and things can't get any better (and potentially could get a lot worse) until treatment is re-commenced. Also worth noting that because you are highly symptomatic again, it would be advisable to have the six loading doses again - and stay on every other day injections until no further improvement if you have neurolgical symptoms (e.g. tinnitus, pins and needles, balance problems etc.)
Its quite simple, buy yr own b12 and self inject - you need cofactors to enable b12 to work - folate/ferritin (needs vitamin c) other b vitamins, iron and potassium
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Any advice appreciated as losing faith in my Dr! 
Folate/Folic Acid daily supplement.
Can I repeat loading doses?
