Still have swollen lower legs and numbfeeling in toes

Finished loading dose b12 25th Sept GP said next dose in Dec one injection only the Nuerologist said no permanent damage but only did a test withthis metal instrument also sent me for more blood tests one which confirms ido have pernicious anemia which i already knew plus borderline under active thyroid i await results for the other blood tests my Gp said my b12 has gone from 112 to 1.200 i cant understand why my lower legs stillswollen plus toes still have numb feelings he wont give any more b12 as i was told while symptons persist i should continue with more injections its took 3 years to notget fobbed off with antidepressants im hoping after my thyroid appointment with consultant might come up with something very worried im stuck numb toes swollen legs that might lead to more problems

8 Replies

  • Ask the GP to read the B12 entry in the British National Formulary (BNF). It says that, in the case of patients with neurological symptoms (numb toes) loading doses should be continued until no further improvement of symptoms, then once every two months forever.

  • Hi i did mention to my GP about BNF seemed a bit off with me said wait for nuerologists full report as i said i was told i had no nerve damage im hoping i dont cant see how a simple test with a metal fork like instrument can detect damage oh well i suppose ill have to be patient and wait Thank you.....

  • Your doctor will have used hydroxycobalamin which is an inactive form of b12 and does not work on those who have had their vitamin b12 synthesis switched off with nitrous oxide gas ( entonox ) . You need the active form of b12 ( methylcobalamin ) which is not available on the NHS and has been reserved for the private sector . Holland and Barrett sell a spray called B12 Boost which you spray under your tongue four times per day . You can also get methylcobalamin on line - just google it . Take a couple of t-spoons per day of blackstrap molasses which contains trimethylglycine , which binds to homocysteine and help you to expel it . Beetroot also contains trimethylglycine . Get some lecithin granules from any good health food shop and put sprinkle over your meals . Eat raw cabbage and kale for folate intake . If you add in some Co Q10 , it will help to protect your heart and helps with digestion and vitamin absorption . Some Japanese seaweed is a good source of b12 . Throw in some omega 3 and in a few weeks you will notice the difference .

  • Hi There Thank You for your reply as im a newbie and only just got a diagnosis of Pernicious Anemia im learning quite a lot about it but i thought im not able to absorbe b12 so no amount of food etc i eat will make no difference infact the foods i have and do eat are nearly all contain b12 ill do anything to not have to go back to feeling so unwell since the loading dose in Sept i do feel bit better in energy im not slugging along feeling exausted like i have been i also didnt think any other forms of b12 would be any good to me only injections ill do anything to get myself well again so i can get a life again so many people going through this awful b12 problem unbelieveable GPs dont pick up on it sooner

  • You are correct, your PA means that your digestive system is very poor at absorbing B12, not completely incapable but not very good at it. So you can take very large doses of B12 orally and some will be absorbed.

    But there are other routes to take in B12. Injection is the most efficient, either intramuscular (IM) or subcutateously (SC). If you inject 1mg then you know that 1mg has entered the body.

    Bu there are other, less scary, possibilities.

    You can use sublingual (under the tongue) tablets or sprays, or intanasal (up the nose) sprays. In these cases the B12 is absorbed across the thin skin of the nose/mouth. But you can never be sure just how much gets through.

    Some people (myself included) like patches that you stick to your skin and the B12 gets absorbed through the skin. They're easy to use and, for me, quite effective.

    Doctors prescribe hydroxocobalamin (HoCb) even though it's not the 'active' form. That's because the body converts it into methylcobalamin (MeCb - which still isn't the only active form). Some people aren't very good at the HoCb to MeCb process because of their genes. But it's extrardinarily rare for people to be incapable of it (they tend to die very, very early).

  • Once again Thank you fbirder very easy to understand your information if i can help myself i will!!

    l ill await my results from nurologist see what he has to say plus i have app with consultant re thyroid which GP says is borderline underactive in the meantime im taking iron tablets plus calcichew d3 forte alendronic acid 70mg which was precribed last year for moderate osteoporious im now thinking all these things these things àre all connected i have also had vitiligo for many years now none on my face luçky enough i have learnt to live with it as no cure but i now know that is a positive person so hopefully all will be sorted out soon and i can get back to my old self

  • Any advice greatly recieved Thank You....

  • Well i now have my copy of letter from consultant nuerologist starting with Thank you for referring this 78 yr old woman im 67! She reports numbness in her toes which does not spread more proximally to upper limbs ive got swollen lower legs! She has occasionally double vision i have it most of the time! The only thing he got right i do have pernicious anemia her level have gone to 1,200 from 112 i knew that too so im not holding out on too much when i see my GP as the report says all ok no nerve damage he suspects distal sensory symptoms are related to B12 which has been treated levels normal now, what a waste of time so im stuck with numb toes and swollen lower legs which dont go down when rested so it will be 3monthly b12 of 1 injection only hoping maybe the Thyroid appointment goes well with consultant on Mon im only showing borderline underactive i have more energy at the moment and holding on to my sense of humour so many others going through this with crappy GPs n consultants my German shepherds will be so happy to gave me back out on the coastline long hikes me too....

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