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Pernicious Anaemia Society
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b12 shots - type, how much & when??

Hi guys/girls,

just looking for some advice. Doctor has currently point blank refused me any injections, since my Full Blood Count results all came back saying that everything is completely normal. (Which i think translates in GP terms to this person is lying to you and has no symptoms at all)

So, anyway I was informed of some 'beauty' clinics that do b12 shots, so I arranged an appointment and got one done.

I had 0.5ml of methylcobalamin yesterday.

Today I feel no better at all. Actually I feel possibly a little worse and I feel knackered. I'm a carpenter by trade and every day is getting harder and harder to do my job.

So my questions are as follows:

1: Did I choose the correct b12? The other option was hydroxocobalamin.

2: Did I have enough? (0.5ml, they said the max I could have was 1ml)

3. When would it be OK to get a 2nd shot?

4: How quickly do you find you get relief after your shots?

FYI, due to how long this has been going on, I fear I may have caused some pretty substantial nerve damage. It certainly feels that way anyway, with this pain. Thought I'd throw this information in, in case it's relevant to above questions.

Thanks!!

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it isn't so much the volume as the amount of B12 you need to know - which is a mix of the volume and the concentration.

If the concentration is 1000mcg/L then you would need 1ml to get the normal dose of 1000mcg.

People vary in which form of B12 they respond best to - some do get on very well with methyl - others don't and find it can make them feel quite spaced out. Personally I use a mix of all 4 artificial types - cyano/hydrox, methyl and adenosyl - find that methyl is quite good for some neurological symptoms but does nothing for neuro-psychiatric where as adenosyl is quite good for my mood (use sublinguals as not very stable in solutions).

The only way to know which B12 works for you is to try them.

Unfortunately one injection is unlikely to be enough - normal loading regime (neurological involvement) in the UK is 3xweekly until symptoms stop improving followed by 2 monthly - using hydroxo - but how frequently people need maintenance doses dose.

There's no real way of knowing how long recovery takes and sometimes people do report feeling worse before they feel better - others notice no difference for some time and then it picks up after a maintenance dose. It really depends on what symptoms you have and what exactly is causing the symptoms - B12 is used in different processes in the body and symptoms may be caused by effects in several different processes.

Suggest that you actually get hold of a copy of your blood test results.

Symptoms of B12 overlap with a number of other conditions so although your symptoms may fit with B12 it may be something else that is going on ... or there may be more than one thing going on.

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Great information. Thank you Gambit. I have a copy of my blood test results. don't mean much to me though tbh. B12 was 862, but i'd been sub_lingually supplementing for a couple of weeks prior. And folate was high also apparently, but wasn't taking folic acid at that time. So desperate to ease these pains. I HAVE been referred to a neurologist, but first available appointment is March 2018. My GP's don't seem in the least bit concerned about this taking as long as it takes. Which is really disheartening.

Thanks again for the info. I may go again for a 'hydroxo' shot on Friday and see if that helps any. So frustrating that you have to almost self-diagnose, self medicate and speculate as to whats best, when the professional's have the tools to give you a much clearer picture, but are reluctant to act.

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could you copy out the ranges and ynits and people here will be able to help you with interpretation of some of it at least.

If your levels were that high after a couple of weeks of sublinguals then it doesn't look as if you have an absorption problem and it is probably something else that is going on.

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Hi Gambit,

My results were as follows:

Full blood count

Total white blood count 5.1 10*9/L [3.7 - 11.1]

Red blood cell count 5.10 10*12/L [4.6 - 6.2]

Haemoglobin concentration 154.0 g/L [130.0 - 170.0]

Haematocrit 0.446 l/l [0.4 - 0.5]

Mean cell volume 87.5 fL [80.0 - 101.0]

Mean cell haemoglobin level 30.2 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 345 g/L [290.0 - 360.0]

Platelet count - observation 248 10*9/L [150.0 - 450.0]

Differential white blood cell count

Neutrophil count 2.2 10*9/L [1.7 - 7.5]

Lymphocyte count 2.2 10*9/L [0.9 - 3.2]

Monocyte count - observation 0.5 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.2 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

B12/Folate were:

B12/folate level

Serum vitamin B12 level 862 ng/L [150.0 - 900.0]

Serum folate level > 23.4 ug/L [3.1 - 19.9]

Above high reference limit

Serum ferritin level 60 ng/mL [15.0 - 400.0]

and Serum TSH results were:

Serum 25-Hydroxy vitamin D3 level 78.1 nmol/L

<25 nmol/L: Vit.D deficiency, requires replacement

25-50 nmol/L: Vit.D insufficiency, consider

replacement

50-150 nmol/L Adequate Vitamin D status

Serum TSH level 1.07 miu/L [0.38 - 5.33]

Please note slight change to reference range from

08.08.2016

To be honest I don't know what my b12 count was prior to this test, and i've heard that the FBC includes any inactive b12 in your body also, so would that not show as falsely high anyway, just because it is in my system and not necessarily because it has been absorbed??

Thanks in advance.

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The normal ranges for serum B12 take into account the fact that it measures active and inactive B12. You can get tested for just Active B12 (holotranscobalamin) and the normal range will be four or five times lower than the serum range.

It's like counting sheep. You can count heads to you can count feet and divide by four. Either method gives the correct answer.

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Ah, ok. I wasn't aware. But surely if I have neuropathy issues, it's being caused by a malfunction at some point linked to how b12 is behaving in my body, no?

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there are a few genetic conditions that can affect how you cells process B12 but serum/active B12 tests aren't going to help identify those and they are quite rare

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FBC = full blood count: thats allthe info on you red and white blood cells - which isn't throwing up anything obvious- no signs of either microcytic (small) or macrocytic (larger and rounder) red blood cells but if both are present then one can mask the other - RDW isn't included but it would be high if you had a nic of microcytosis (low iron) and macrocytic (B12/folate low) going on.

not that good on interpreting white blood cells - but nothing obvious there

folate and B12

B12 high in range. folate above - were you supplementing folate as well as B12?

ferritin is another measure of iron and looks in range

TSH is a measure of thyroid function: not throwing up anything obvious but its only one measure -

vit D also looks ok

serum B12 measures all B12. active/holo-T measures just the B12 bound to TC2 - the protein that allows it to pass into you cells, which is generally 20% of total. Both tests are just measuring the amounts in your blood = not what is happening with B12 in your cells. Homocysteine and MMA are tests that look at waste products that build up if your cells dn't have enough B12 to recycle them to useful building blocks so can be indirect indicators of what is happening in your cells but they can also be raised by other things so need to be done in context that rules those out - eg liver and renal function in the case of MMA.

Basically your blood test isn't highlighting an obvious diagnosis. There are a few other tests that would look at other indicators in relation to other conditions.

Has diabetes also been ruled out? HbA1C

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Thankyou so much for the translation. I wasn't taking folic acid supplement at the time. I am now. (400ug)

I think diabetes was ruled out, but couldn't say for sure. I'm not aware that I have been specifically tested for diabetes, except for a wellman appointment I had a year or so ago, which came back OK.

I have however just checked out the symptoms of diabetes, and I have been needing to pee ALOT more frequently, and getting up in the night. But i put that down to my b12 supplementing. But i've also been suffering with blurred and rapidly deteriorated vision. Both of which i'm unsure are symptoms of b12 deficiency??

At what point does this become serious enough to attend A&E? I've been referred to a neurologist, but the earliest appointment is more than 16 weeks away. By that time, I dread to think what state my body will be in, It honestly feels like it is screaming out for help, but when I told my GP this, she seemed to almost smirk, as if I was exaggerating.

Guess I'm going to have to just make ANOTHER appointment with my GP. But they just make me feel like I'm wasting their time.

I'll report back any more results as soon as i get them. Thanks again.

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put together a 'script' of what you want to go through with the GP.

to reiterate

- symptoms of B12 overlap with a large number of conditions

- blood tests to date are not throwing up anything obvious as a line of inquiry so options are to delve deeper into the next level of tests for conditions looked at and/or look at other conditions with overlapping symptoms

however, also need to bear in mind that tests do cost money. you seem to have embarked yourself on a trial that could rule out B12 - not necessarily as easy to follow the same strategy with other conditions because of risk of overdose.

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Will do.

And yes, i do appreciate that. To be honest, I'd appreciate a concerned attitude from my GP, more than I want to have every test available. If they seemed like they cared about my health and wellbeing it would go a long way. My last appointment was ended with the sentence "Anyway, we are just going round in circles and i'm late for my next patient" I looked at my watch and we were 1 minute over.

Didn't do much for Doctor/Patient relations.

I'll be sure to take a script and hopefully I'll get a kind response.

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best of luck and soooo know what you mean about the caring attitude

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Thanks Gambit. FYI, patient support officer from my practice, who I have successfully managed to get 'on my side' with regards to my case, attempted to expedite my consultation with the neurologist at my local hospital but unfortunately hit the same dead end that I did. No appointments currently available. No information on when any will be available, or any helpful news whatsoever. The current earliest appointment I can get at an alternative hospital is Mid March next year. I dread to think what state I will be in, if I have to wait till then for an accurate diagnosis. I'm seriously going to have to consider looking into private options. I dread to think what the prices of this are going to escalate to.

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similar situation with a different condition in my case at the moment.

Suspect that private may not be more expensive than trying to go with the injections at the slimming club.

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It take over your life doesn't it :(

And yes, I actually considered this. All I need to do now is find out the best route to finding a private neurologist who treats somewhere near me. Yet another project to investigate in this never-ending saga.

Let's hope we can all manage to, at the very least, get through Christmas in as little pain as possible.

Ever the optimist.

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Hi,

All I wanted was for my GPs to try to find out what was wrong rather than for me to keep making suggestions. The uncaring attitude badly affected me.

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I totally feel ya, sleepingbunny. This is what has annoyed me most, i'm the one making all the suggestions, and then my GP, just goes along with it and takes action accordingly. No suggestions of alternatives or other possibilities whatsoever. And then gets upset that i've googled my symptoms. Well one of us has got to be pro-active and I'd be waiting till 2019 to be seen for anything if I waited for them to do anything constructive.

It's been that bad I made this in light of my recent GP experience.

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The best and cheapest solution for you is to self-inject . It is quick and painless . It is most unlikely that you need Methylcobalamin . Hydroxocobalamin is excellent . It is what the NHS uses . You can look at videos on u tube to find out how to S.I. You can obtain Hydroxocobalamin from excellent acredited German online pharmacies . I use versandapo.de . They have site in English I buy 100 ampoules of Hydroxocobalamin for €55.90 + €8.00 for courier . The ampoules have a long used date - about 2 1/2 years . They come in 1ml/1 mg ampoules ,which is a normal dose as administered in NHS . . Needles , syringes ,swabs and sharps box can be obtained from medical suppliers e.g. medisave.com and Amazon uk

Buying in bulk means that one injection costs you £1.00 . I dread to think what you paid for .5 mg at the clinic . If you are badly B12 deficient , best give yourself loading doses to start. . This means an injection every other day for 2 weeks . Also take 400 ug of folic acid daily(vitamin B9 -it works in tandem with B12 ) , or take as folate - green leafy vegetables , peas . THIS IS VERY IMPORTANT . You may well start to feel improvements after loading doses. If you have neurological issues , keep up the loading doses until no improvement.Thereafter find out by trial and error how much you need to keep well . That’s what I did and I settled at weekly . You cannot overdose on B12 , there are scientific papers about this . Do not despair .

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Thankyou for the information Wedgewood.

That will certainly be my next port of call, once I can get the paraphernalia AND the confidence to do so. I hope I can do it as painlessly as the nurse at the clinic did. I've heard a lot of stories of it being pretty painful, but I didn't feel a thing.

I AM slightly reluctant to do too much, as I don't want to affect my tests/results when I see the neurologist. (but my referral to him/her is not till March 2018, and no way I can suffer this pain till then)

The cost of the shot wasn't obscene. That is until you add it to the cost of my days loss of pay, and the train ticket to London to get it done. Then it comes in or around the ball park of £2-300. Not something I can afford to do on an 'every other day' basis as you can imagine :/

I'm going to pay a lot of attention when I get my next shot done and see how I feel about doing it myself. I should be OK. Shot myself with my nail-gun before, so can't be much worse than that right? :)

Thanks for your help.

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Your high serum B12 after taking tablets strongly suggests that you don't have an absorption problem. That would make injections pointless as you can get just as much into your system without them.

Personally, I would carry on with the daily sublinguals and see if that helps. If it do ent then it's highly unlikely that injections will fare any better.

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I can assure you that I suffer NO PAIN at all . Mind you , the first time you do it it’s a bit terrifying . You need to use two needles . One to withdraw the liquid from the ampoule, which in so doing you need to touch the bottom of the ampoule , thereby blunting the needle a little . This needle should be long , say 1 1/2 “- To inject I use the finest possible gauge 25 and 1” long into the central outer1/3 thigh where the muscle is nearest the skin . Absolute hygiene is important .

Methylcobalamin is obtainable in UK , But is much more expensive . I tried it and found it no better than Hydroxocobalamin.

Best wishes to you .

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Yes, I've read information regarding the use of two needles, but thank you for pointing it out anyway. I'm really hoping my hydroxocobalamin shot that i'm going to book for Friday has some sort of impact, so that I can be confident in ordering some for myself, knowing that it will help, but we shall see.

I'll be sure to report back either way, and possibly be back for further advice, once I receive all my self-injecting kit. By the way, I had my shot in my Glute, which likewise was pretty painless. That was until I was wearing my tool belt the next day and it was sitting right on the puncture location. Not an experience I would recommend. Think I will be opting for the thigh. I've heard the shoulder is the most painful.

Thanks again.

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The Deltoid injection I don't think is painful & works faster. I think it can sting if the area has not dried after the alcohol wipe, but if you just relax your arm by your side & not tense up when needle inserted u'll be fine.

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Hi,

"Doctor has currently point blank refused me any injections, since my Full Blood Count results all came back saying that everything is completely normal"

I think it's possible that doctor was looking for signs of macrocytosis (enlarged red blood cells) which can be associated with low B12.

But macrocytosis is not always found in people with low B12, see links below

stichtingb12tekort.nl/weten...

stichtingb12tekort.nl/weten...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

There is a useful summary of B12 documents in third pinned post on this forum.

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Thankyou sleepybunny.

I have actually already quoted a couple of guidelines from the BJH in my letters to my GP, alas, I cannot send them links as I don't have email addresses. Not that they would read them anyway. I get the distinct feeling they are less than impressed by my current health concerns and perseverance to get the correct treatment as it is.

It's always useful to get as much info as I can though, so thanks. I feel like I could almost write my own book on b12, neuropathy and associated topics already :/

I'll report back any progress.

Thanks again.

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I have Pernicious anaemia, B12 deficient & have suffered with this for 18yrs. I have a monthly injection but it no longer makes any difference. I to have neurological problems...my memory is terrible, my balance is affected & I feel wobbly & walk over to one side, worse if it is dark & no focal point. It also affects my breathing, bouts of heaviness in my chest & my heart rate feels slower & general fatigue, but doctors ignore my plea to give me more than one a month even though I have had a couple of times where I needed an ambulance. My health is suffering so I to have ordered Hydroxocobalamin online from Germany & intend to self inject. I need to feel normal again instead of suffering & not being able to get out much. Oh & any test after being treated with B12 will show a false level. Mine was over a 1000 but I still have to continue with injections for life..my intrinsic factor test was positive when I was diagnosed. I don't think doctors fully understand that you should be treated as an individual on your symptoms & not the same for everyone. I wish you all the best Dan & anyone else who may be suffering here.

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Aww, that sounds positively awful Christine. I'm not quite that bad. Yet :/ I hope your self injecting goes well. Looks like this is the position we will all end up in eventually. I wish you all the best too.

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Hi again,

"B12 was 862, but i'd been sub_lingually supplementing for a couple of weeks prior. "

Was GP aware that you were supplementing prior to test? Any supplementation should be taken into account when interpreting results.

A word of warning...some GPs don't react favourably when they find patients have been self treating.

My understanding of flowchart below is that people who are symptomatic for B12 deficiency, where other possible conditions have been ruled out, should be treated even if B12 levels are within range.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

On the right side of flowchart it says that if results of second line tests eg MMA, Homocysteine, Active B12 are normal but there is a good response to B12 (eg symptoms improve) then continuing treatment should be considered.

Functional B12 deficiency

Some people have plenty of B12 in blood but it's not getting into the cells. Some links about functional deficiency in link below.

b12deficiency.info/b12-writ...

Symptoms Diary

Some people on forum keep a symptoms diary, noting how symptoms improve/fluctuate with treatment. Some people use a number scale to indicate severity of symptoms. It can be evidence that someone is responding (or not) to treatment and also evidence of when symptoms return during gaps between supplements/injections.

I am not medically trained.

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I told doctor I was supplementing. Don't think this info was passed on to the testing lab though.

This is what I have been trying to get through to my GP, constantly. I've been begging for trial IM shots, even just as a precautionary measure, just so as I don't suffer any long-term physical damage/effects.

With regards to the symptoms diary, I have been doing something similar, but the pain levels is a great idea.

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