Hoping my B12 was low

[RoniB]

I have been feeling so tired and lethargic and asked for a another blood test. I am hypothyroid taking 125 Levo. In the past year I have twice been given B12 injections as my blood results were low. I have just been given the readings which are:

B12 - 267

TSH - 168

T4 - 15.2

T3 - 4.3

The receptionist said all normal - no action required. I am 71 years old, have only one kidney/adrenal gland due to having my kidney removed with a tumour five years ago. I was hoping for another B12 injection, but apparently my B12 is not low enough.

Would it help if I took B12 tablets or can I buy some B12 and find someone to inject me?

[fbirder]

Only one way to find out if the sublinguals will help and that's to suck them and see- literally.

[Gambit62 Administrator]

could you say a bit more about 'hoping for another B12 injection'. Have you had B12 injections in the past? and when/why were they stopped?

[RoniB in reply to Gambit62]

A year or so ago I had a blood test as I was feeling very tired and the surgery phoned me afterwards to say that my B12 was very low and I would need injections. They gave me 4 injections over 2 weeks. About 6 months later I started to feel the same and went to see the nurse. She gave me an injection and I felt great again. I was feeling the same as before so asked for a blood test again and the result was 267. I think she said a range of 191 but didn't catch the second figure. This is the first time I have actually asked for 'numbers', they usually just say normal, no action or occasionally say I need to see the doctor or the nurse. Until joining Health Unlocked I didn't know you COULD ask for the actual figures. So when I said I was hoping for an injection, I thought the figure would be low enough for them to prescribe more injections. The receptionist did say that I could see the doctor if I carry on feeling exhausted, and I think I will do that. I just wanted to have some information so that I know what to say to him.

You ask why were they stopped. The doctor didn't say I would need any more after I'd had the first 4 and I felt that it was almost a favour from the nurse that I had the second one.

[Gambit62 Administrator in reply to RoniB]

A B12 deficiency can be dietary or it can be an absorption problem - much more likely to be absorption than diet, unless you are a strict vegan.

If your deficiency was dietary then you should have been given 50mcg cyanocobalamin tablets to take for a few months and told to supplement properly.

However, you weren't and you have been treated as if you have an absorption problem - that means regular injections for life - frequency varies from country to country and type of B12 being used (and whether your GP realises that B12 treatment needs to be centred on the needs of you, the patient). In the UK that means injections every 3 months - unless you have neurological involvement in which case maintenance is every 2 months and the loading regime should have been much more aggressive.

The exception to shots for life would be if the absorption problem that was treatable - basically a h pylori infection - in which case you would have had a course of anti-biotics and a period on PPIs.

Serum B12 levels are a rough guide to deficiency at the best of times - and will miss 25% of people who are deficient - after loading shots the normal range really doesn't apply any more - so levels can't be used as a guide to when you need another shot - and shots certainly should be dependent on what the results of a serum B12 test (unless it genuinely has come back low) in which case the frequency of maintenance shots definitely needs to be increased.

Unfortunately B12 injections means raising your serum B12 levels well above the normal range which can kick of a reaction in some people that stops the B12 passing from your blood to cells. An effective way of treating this is to keep B12 levels in your blood very high (like building a dam but needing to keep levels high so enough seeps over the top to get downstream). Without B12 at the cell level all the processes that B12 is used for stop and you start to feel awful again.

If you are based in the UK you need to go back to your doctor and ask why you are not being treated in accordance with current guidelines and get a B12 shot immediately.

This is a link to the BCSH guidelines on B12 deficiency - GPS can access this through the BNF if UK based - the link may not work if you are outside the UK

onlinelibrary.wiley.com/doi...

[RoniB in reply to Gambit62]

Thank you so much for this. I'm 71 and part of the generation who feels that the doctor is always right, so have never questioned why once I had been given B12 shots they didn't arrange for me to have more. I felt so good after them and I can tell I need them now but because they are 'within normal range' 267 (range 191 - 900??) their response to my blood test was 'normal, no action required' Thank goodness for Health Unlocked and the amazing people who care enough to help people like me.

I am in the UK and I know the NHS is stretched at the moment and I'm so grateful for the wonderful surgeon who removed my kidney complete with a 15.8 cm cancer five years ago. I guess I feel that I don't want to 'make waves', but that little injection is worth fighting for - it can change your life!!!

I do eat meat and like nothing more than a medium rare steak, although I take care to eat a varied diet. My husband grows his own vegetables and we eat very well. I love cooking and practically all the food I prepare is from scratch with natural ingredients.

I'm not sure what neurological involvement means. When I'm feeling awful, in addition to my extreme lethargy I do have some palpitations at times and I definitely feel a bit depressed and touchy too. In common with lots of people my age I have osteoarthritis but I can live with that if they will give me some more 'magic' injections

[Gambit62 Administrator in reply to RoniB]

neurological symptoms would be things like pins and needles and balance problems - neuropsychiatric would be the depression and the tetchiness is a very common symptom of B12 deficiency.

B12 deficiency can play a part in osteoarthritis.

the actual phial that the injection coms in costs less than £1 - most of the cost of the injection is the cost of the nurses time to give it - which generally isn't much time but is nevertheless quite expensive. However, what is really expensive is dealing with the consequences of not treating people who have a B12 deficiency properly. Unortunately it tends to be a qustion of penny-wise - pound-foolish.

[RoniB in reply to Gambit62]

Hi Gambit62 - it's me again after 3 years. Just wanted to check in to tell you that on Monday I was diagnosed with Bells Palsy. I have always been refused further B12 injections but have been given 50mcg cyanocobalamin tablets in the intervening years and I do supplement them with extra multi B vitamins and extra B12 when I feel particularly low. The surgery also phoned me after one blood test to say I should buy some Folic Acid as my folates were low and I do try to remember to take those.

The doctor on Monday was great, lots of test and the diagnosis of Bells Palsy was very certain. I had woken up with a drooping face on Saturday morning and had ruled out a stroke myself as I had no other weakness than classic facial palsy. I didn't ask about B12 deficiency as I was so pleased to be in time to be given Steroids for the first time in my life but I wonder if I should mentionon it on my follow up appointment.

[Gambit62 Administrator in reply to RoniB]

if your diet is good in terms of folate but you are deficient that would suggest an absorption problem, Because folate is absorbed in roughly the same region of the gut as B12 that makes B12 absorption more likely, so it would be worth mentioning. It would be useful to see if there has been a significant drop in B12 levels since the last time they were measured which would point to a B12 absorption problem..Backing documentation for that would be the BCSH guidance on diagnosis and treatment of folate and cobalamin disorders

onlinelibrary.wiley.com/doi...