Nerve pain low ferritin and low b12 but no treatment 😪

Hi all new to this website hopefully someone can help! I have been suffering from heart palpitations, integration, extreme exhaustion, ridges in nails etc for years along with 10 years on going Anemia! Recently had bloods done and ferritin was 8 and b12 100!! Gp gave me tablets and packed me off home. Only until December then came severe nerve pain in Both legs! Prickles all over my body and numbness. It is predominant on left side. Then in the evening my legs burn and feel hit to touch! I'm sure I seriously need the injections! Can anyone give me advice?

6 Replies

  • Welcome, I would suggest you make an appointment with your gp to further discuss treatment, explaining that despite the tablets your symptoms seem to be worsening. Hopefully another blood will be done to clarify if you are actually absorbing the b12 from the tablets, although its not foolproof.

    Take a look at the website attached to this forum and then make a list of all your relevant symptoms to take with you, if any have actually got better whilst on the tablets or if in fact you have more.

    Personally im surprised that with such a low reading initially that you werent given load dose injections straight away. But unfortunately gps are a law unto themselves in how they go about treating b12d or PA.

    Unfortunately there are many overlapping symptoms for many other conditions which may mean despite a very low reading that in actual fact something else could be creating the new symptoms.

    Are you taking any other supplements ie. Folic alongside your tablets?

  • Hi thanks for replying here we go lol... I've had brain and spine Mri scans to rule out Ms. Nerve condition studies. Autoimmune screans from lupus to Sjögren's ! I do have hyper mobility however pa runs in both sides of my family and with 10 years of Anemia and now developing neuropathy I very concerned. I have been taking cyanocabalomin 50mg twice a day and my own high strength b-complex vitamin and stayed on a strict gluten free diet and cows milk free diet and I was cows milk intolerant whilst I was younger! And I have noticed quite good improvements. I still have the hot burning legs at night which i believe I a sign of pa in itself. I am going to book in with my gp and be firm asking for b12 treatment as I'm sure when a patient presents with neuropathy and low levels your entitled to be treated by law! They gave me the cyan 59mg and since taking them from November im still only at 290. Is this a sign of not absorbing enough or is it still quite low?

  • Can you tell me if you receive my reply I'm not sure how and if I'm replying right lol

  • Yes your posts are fine.

    Would ask for repeat bloods before you do anything else.

    No doubt you have seen and read on here that there are other treatment options open to you.

    So firstly you need to try to get your gp to accept and give you the right treatment.

    Others on here will be able to tell you that it is a very fine balance of 'add ons' which make any b12 supplement work. Maybe you now need one of the other 'components' to make it all work.

    I use methyl patches which are a mix of b vits, which seem to work for me in between jabs which are 3 monthly as my gp refuses to acknowledge my neuro symptoms. But that and a multivit/ mineral tablet have stopped my burning legs.

  • Very few GPs understand the symptoms of PA/ B12 and have not read latest research or BCSH guidelines. Your B12 is extremely low, which together with longstanding anaemia and the neurological symptoms you mention, should be treated with B12 injections without delay, according to the BNF and UKNEQAS guidelines, until no further improvement.

    I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as the tablets, probably Cyanocobalamin, are completely inadequate and there is a short window of opportunity before the neurological symptoms become irreversible.

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    Below are two very helpful websites: (List of symptoms and an excellent film)

    The above latest UK research document is supported by many research papers and has a useful summary if GP won't read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

    Many people here self inject successfully as tests are unreliable and, what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', by Sally Pacholok and Dr J.J. Stuart - a book I would thoroughly recommend.

    It could also be worth calling the PA Society, who should be able to help if your GP does not take your symptoms more seriously.

    Tel. 01656 769717

    I hope all starts to get better for you soon Emzi.

  • My b12 levels came back at 104 . Gp wanted me to have injections straight away however I wanted to try the tabs. I took them for 2 months my b12 level only went up to 224. My gp wasn't happy with the result and put me straight on to injections. I was diagnosed with PA and that was the cause of my b12d. To find all this out I had an anti body test and i was also tested for coeliac. Ask your doctor to do these tests this may help.

You may also like...