Help - possibly allergic to B12 shots!!

Hi Caitlin   many thanks for your message.  I had blood tests done and my GP simply told me I wasnt diabetic.  That said I was told a number of years ago by my GP I had a touch of hyperglycemia.  Never suggested I do anything about it.  If I dont eat regularly I get very shaky and I faint. Not sure if this has any relevance to sugar levels.  many thanks  Tracey

Hi Caitlin  my neurologist has just advised me that B12 deficiency does not affect any one neurologically unless their reading is under 50 or due to one having absorption issues or being elderly with kidney disease.  What do you do?  This goes against everything Ive been reading.  It is worrying if you cant rely on the word of a neurologist of some 20 years standing.  all the best   Tracey

hi tracey. those episodes of skakiness/faintness/blurred vision/confusion/disorientation and the experience of feeling 'unreal' are fairly classic symptoms of hypoglycaemic attacks. hypoglycaemia can happen independent of diabetes. they can be triggered by a sudden change in dietary habits, irregular meals, going long periods without snacks and of course stress. some ppl are very succeptible to unstable blood sugar levels. i am.

re: fears/potential for an allergic reaction: u could ask the nurse re the possibility of a test dose after u had explained ur worries/fears re same.

i know that b12 used to come in individual vials of powder that had to be reconstituted with sterile water or normal saline on site @ the hospital or GP surgery. if they still do that, it'll sort the ethanol problem. if not, they may know where u might obtain such. however, allergic reaction to b12 is very rare. it's just a fluid vitamin. if on the off chance u were unlucky to have a reaction, it's the best place to be as they as geared up for shock / adverse reactions. they'll have the necessary anti-dote treatment to hand. .

do expain your worries to the nurse. let her know any history of allergic reactions to meds. or/and general allergic reactions. i'm sure they will be supportive of whatever u decide. see how u feel tomorrow.

thoughts are with u all the way.

C

i don't go with the Neuros deductions at all. Dr Chandy who works with the condition daily and has made it his life's mission, says neuro symptoms can present at levles of around 500. the problem is, u may present with numb toes @ say 200. i may not present with numb toes untill i'm as low as 50. however, i maybe totally fatigued and u may not. everyone presents & responds differently. like most conditions it's a very subjective experience. Neuros don't see much b12 deficiencies cos most remain undiagnosed. GP's are NOT at all vigilant at picking up b12 deficiency as they think it's an extinct disease. so if u ain't looking for it, u won't find it. btw, just read ur last post. i'm pleased u have come to a decision. the sublingual should start replinishing ur reserves. do let us know the results of the MMA test. stay strong in ur convictions.

C

Hi Heather   Many thanks for your message.  My folate appears ok  12 in a range of 3.1-20.5.   I do have some Sublingual Methylcobalamin 1000 MCG arrived today in the post. Not yet taken one as didnt want to mask results of tomorrows planned injection.  From everything I read it appears where neurological signs have set in (my toes went numb 4 months back) an injection is absolutely vital.  What a worrying dilemma.  Many thanks    Tracey

Your injections should help you a lot. If I were you I would take 400mcg folic acid daily to keep levels up during b12 treatment. B12 uses a lot of your folate. 400mcg would keep you at ideal levels.

Many thanks Martina for the message.  Yes Heather and Caitlin have been incredible today as have other lovely people on this forum giving up their day to assist with queries.  Ive been bowled over to be honest.  Keep me advised as to how your injection goes.  I am sure you will be fine.  I seem to have a silly system that reacts to anything new : I cant take penecillin - thats fine but now it seems to be preservatives too.  Good luck and keep in touch!   all the best  Tracey

Thank you so much Marion for responding to me at this late hour!!  My neurologist has just advised me that neurological symptoms do not occur unless your B12 reading is less than 50 or you are elderly with kidney disease or have absorption problems. Its so confusing.  I am going to go ahead and try and get an MMA urine test done urgently which will definitely confirm if I am deficient (even given my low reading) and depending on the outcome where I go from there.  Tomorrow I think I will start 1000 mcg tablets and cancel injection - I am just too worried about side effects.  I agree to administer in a hospital would probably be my best bet - what a nightmare.  All the best  Tracey

The active substance is Hydroxocobalamin.

The other ingredients are sodium chloride, glacial acetic acid in water for injections.

Hi Tracey, I can see from some of the other messages that you are getting good advice. My levels were 176 when I was diagnosed as deficient, and believe me there were plenty of neurological symptoms at that level! Lot's of us with the B12 deficiency are like that because our digestive system fails to absorb B12 from our food. We could take pills, but they wouldn't do a thing for us! The injections do work, but it takes time to re-build a depleted B12 level. I began my loading injections ( six over two weeks) last March. I am now on one every three months, I think I need more than that, so it's an ongoing "discussion" between me and my GP! He offers me extra blood testing, but unless I'm below 500, I can't get the extra injection. There are so many complications with the whole way B12 is absorbed and used, lots of other vitamin levels need to be right too. I can recommend the book "Pernicious Anaemia, The Forgotten Disease" by Martyn Hooper. He is the founder of the Pernicious Anaemia Society, and just to read what happened to him and his experiences makes you realise how uninformed a lot of our doctors are on this subject. I do hope you find some help soon, please don't delay treatment, your health is the most important thing. Best wishes Marion x

Hi Marion   many thanks for your message.  I have to say I found my neurologist's comment surprising after the knowledge I have picked up over the past few days on the subject of PA.  You would think with a career of over 25 years he would have seen thousands of people presenting with symptoms of deficiency.  To say you have to fall below 50 to suffer neuro damage seems a total contradiction.  I do sympathise with your plight of not being able to absorb B12 - how very frightening.  With me I am guessing its down to my diet even though I have until fairly recently taken a daily veggie vitamin which includes the recommended B12 RDA in addition to drinking fortified milks etc.  I feel pretty stupid now that I am suffering from something that could potentially could affect my future health for good particularly as this could have been avoided so simply.  I have always felt so healthy, no signs whatsoever until the foot went numb and over the past 4 months of tests which have shown up nothing put it down to perimenopause.  Infact there are alot of ladies out there my age suffering the same symptoms on forums - I fear they may too have been told their B12 levels are within range so there is no deficiency.  Yesterday my long distance vision went odd and I just didnt feel 'right', feeling unreal and felt I walking slightly at an angle. I also feel that I have a lump in my oesophagus like Id eaten a lump of dry bread - doesnt stop me eating food as such.  Coupled with sensitive tip of tongue (which has been sensitive on and off for past 4 weeks) like Ive burnt it on a hot drink so I went to my GP.  She feels Ive had a reaction to the Vit B Complex 50ug (Cyancob) and suggested I stop them.  As such I have not started the 1000 mcg and had my B12 injection cancelled.  I have to say I was pretty terrified at the thought of having the B12 injection as I seem to react so easily to drugs having had hives, vision problems and dizziness with completely unconnected drugs (suspecting carrier or preservative) which is also in the B12 injection.  I had another B12 blood test together with T3 and T4 low thyroid levels show over-active thyroid and I should get the results by the end of the week.  I am guessing given the 3 lots of Vit B Complex the readings may be elevated but I guess I will have to wait and see.  That said GP is still maintaining I am in the normal range.  I note there was a note on my records to give me one dose just to see if that got the levels up - to shut me up I think!!  Tomorrow I have repeat MRI's of spine, thorax and brain and awaiting dates for lumbar puncture and more electrode tests.  My spinal surgeon is even suggesting I see a foot surgeon! and has written me up for some drugs - amitripyline or the like I understand.  Ive already told him I want to get to the bottom of the issue and not just mask symptoms with drugs.  I am feeling pretty low now and feel if the symptoms continue like they are I may have to suggest I book myself into a hospital and have the B12 injection administered there just in case I react.  Problem is I am also very sensitive to steroids used to counteract any reaction.  No wonder I didnt sleep last night!  Thank you very much for listening to me going on.  I do hope you can get your doctor to be more sympathetic to your plight - you shouldnt have to battle for the medication you need.  I will certainly order the book you recommend and get informed on the subject ..... in this way I hope I can pass on information to others so they can avoid unnecessary trauma and ill health.     take care  Tracey x

Hi again Tracey, so sorry to hear how worried you are, I do hope you will get some real answers soon. There is another online source of info which I have found really helpful to me it is called Health Unlocked, and there are various sites covering lots of different medical conditions. I joined for the Thyroid, Pernicious Anaemia & Fibromyalgia. Lots of people, from all over the world post questions and get answers from other sufferers, (who often seem to know much more than the doctors!) I do hope you soon feel much better, and can find a treatment to suit you without any nasty side effects. We must all keep spreading the word, and maybe soon we'll find doctors who will listen! Best wishes Marion x

Many thanks Marion.   I had actually stumbled across Health Unlocked.  I will certainly join the relevant groups.   Ive been having fun and games tonight.  I thought I would eat B12 foods - fish, dairy, cheese and eggs; not something I generally do as a vegan.  They all gave me an itchy throat! Seems my reaction to Vit B Complex has made my body reject B12 - fantastic!!  The net has been useful on another score though - candida I read can adversely affect B12 levels.  I had loads of antibiotics from March to September for UTI's and definitely have candida as a result. Im now off in the detox direction. On the subject of allergies,  it appears B12 can eliminate these for some people - suggesting a lack of B12 can bring them on.  Interesting.   This may explain my numerous allergies and why so many people have a reaction to the B12 shot.    all the best   Tracey x