Pernicious Anaemia Society
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Help!

Hi

This is the 1st time I have posted here and would love some advice. I have B12 deficiency and have an injection every 3 months. This I feel is not frequent enough and I usually start to feel terrible about 3 weeks before my injection is due.

However, I only had an injection on the 19th December and already I feel awful. I have pins and needles in my hands and feet, my heart races and I'm short of breath, I feel pinpricks on my head and I feel the worst exhaustion I have ever felt. I had a blood test at the beginning of the week and they are saying it has come back satisactory!!!! How can this be when I feel so awful? It has really frightened me.

Any advice would be really welcomed please.

Thank you

Jo

23 Replies
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Hi jojo1957

You are certainly not alone in feeling the need of more frequent B12 injections and may in this community find it necessary to self inject if it is not possible to convince their doctors to give more treatment between times.

The blood test you had recently (if it was for B12) will be pretty meaningless unless it had come back LOW. Had you asked your doctor about your symptoms returning?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Hi

Many thanks for your reply I really appreciate it.

So it is not uncommon for results to come back satisactory even if there is a problem? It made me feel like I'm going mad when she said that when I feel so terrible with so many symptoms!!! So soon after an injection.

Would folic acid tablets work?

Sorry to bombard you with questions I just feel a bit scared by it all.

Jo x

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As JMN2017 says patients with neurological symptoms (especially if you have a diagnosis of Pernicious Anaemia) should have B12 injections every eight weeks per the N.I.C.E guidelines.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember but it would be as well if you can get hold of the most recent blood test results to see if your Folate was included.

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Same here.. 😕😕

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it does sound as if you need injections every 2 months rather than every 3.

It is possible that there may also be something else going on - is it possible that you have had a viral infection? another possibility is the development of an (auto-immune) thyroid problem. Was this looked at in the tests.

Serum B12 is not going to be particularly useful at this point - normal range doesn't apply after loading shots because they introduce a factor that can really skew individual B12 requirements.

Definitely worth getting hold of a copy of the test results.

Thyroid is likely to have been TSH test and nothing else - and TSH as a single measure has similar problems to serum B12 as a single measure. Suggest you follow up on that on the TUK forum

healthunlocked.com/thyroiduk

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Hi

Thank you for you're reply. I have tried to book my injections early but they say they can't do them any earlier not even a day or 2. It just concerns me that it was not even a month ago and my symptoms are worse than ever but they say my bloods were satisfactory. They wouldn't give me an appointment to discuss they say I have to ring on the day to make one so will be doing that Monday.

I don't think I have a viral infection but feel so awful who knows. So you think it could be a thyroid problem and it would be worth me asking for this to be checked?

Thank you for replying I really appreciate it as feel a bit scared by it all.

Jo x

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not saying that it is thyroid just that if you have PA it is something to watch out for as 40% of those with PA go on to develop an auto-immune thyroid condition.

suggest that you make sure that you get a copy of your test results - including ranges. Unfortunately GPs tend to not be very good at understanding the limitations of test results.

Please remember that low B12 does affect your ability to cope with stress and anxiety, so make sure that you give yourself time to prepare for any 'encounter' with GP and may be work out a script of what you want to say and tick of points as you make them.

Unfortunately I think we all have occasions on which an injection just doesn't seem to have the effect it usually does so it may just be that.

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Hi

I really appreciate you replying thank you and you are right I do need to get a full copy of my results.

It's funny you say that as I have started writing things down as I do feel a little forgetful at times.

Thank you I hadn't thought of the fact that it may just be one that hasn't taken aswell so that makes me feel a little better.

It just felt very strange being given satisfactory results when I feel so terrible.

Thank you again

Jo x

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I would take 'satisfactory' with a pinch of salt - there is nothing like reading down a list of test results out of context - which is usually the way test results are looked at these days.

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Thank you x

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It definitely sounds as though you need more regular injections . I had the same problem, and my GP was adamant in refusing to give me any extra injections . She even intimated that I was a hypochondriac . So I’ve had to go down the self injection route . Have been doing it for over 2 years . It has changed my life . It’s also very cheap . I buy in bulk (100 of everything at a time ) This makes an injection cost £1.00 So if you are forced to consider that solution , come back here and you will get all the help you need ( B12 ampoules for injection can only be obtained with a prescription in the UK. But there are several reliable and professionally run online German pharmacies where you can obtain Hydroxocobalamin . No prescription needed in Germany ) Needles , syringes etc are easily obtained in U.K. Don’t be surprised if your GP will not give you extra injections . It is a common occurance. The very best of luck to you !

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Thanks to Wedgewood giving me advice on where to safely buy the ampules I am now in control of my own needs and feel almost normal.My experience. With my GP was intimidating and uncaring.She even suggested that a B12 level of 72 would not be responsible for my classic symptoms.A GP who wont bend on this matter seems a common issue.

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Hi

I'd like some advice please?

I'm looking to self inject and would welcome any advice on this. I believe there is somewhere in Germany I can buy this? Does anyone have any details of this? Also if I choose to do this do the doctors wash there hands of you or will they still monitor bloods etc?

Thank you

Jo xx

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I get my Hydroxocobalamin ampoules ( This is the form of vitamin B12 injections that the NHS uses) from verdandapo.de in English( a very good reliable German online chemist ) . Yes google all that . I buy 100 at a time as I inject weekly . Cost €55.00 plus €8.00 courier charge . The use by date is well over 2 years . I keep them cool in a fridge except the pack I’m using . , which should be kept dark at room temperature .

Needles I get from Medisave .com . You need a long needle to extract the B12 1 1/2 “ gauge 21 and a shorter finer needle to inject- 1” and 25 gauge . Alcohol swab to clean injection site and to use to break off neck of ampoule ( to prevent cuts) syringes and a sharps box . You can find videos on U tube demonstrating injection into your thigh ( use middle outside third where the muscle is nearest the surface ) this is the I. M. method . You can use sub-cutaneous with a short needle , but I know nothing about that . Once you are into self-injecting It’s a doddle , honestly . Just do it slowly . at your own pace . Don’t rush it . Remember plenty of folate / folic acid as well is essential . I wish you all the very best .

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Hello

Thank you so much for your reply it's been really helpful. Is it easy to order from the German website and does it take long to arrive?

It does feel daunting but I'm sure it's what I need to do.

Jo xx

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It’s really easy to order , especially if I spell the website correctly ( I didn’t in my message to you !) I takes about 4 working days The correct address is

versandapo.de in English

Yes , type all that and you get straight through to the site in English . I think you have to register first . I ve been using them for over 2years , so I can’t remember exactly . I buy 100 ampoules at a time as I inject weekly . The use by date is usually 3 years ahead . I use the 1mg/1ml ampoule , by Rotexmedica . 1mg/2ml is also obtainable from a different maker .Cost about €52.90 Plus €8.00 courier . The ampoules are also obtainable in multiples of 10- cost €7.99 each . I find those prices really reasonable . Just search for “Hydroxocobalamin acetat “ and you will get all the choices of B12 ampoules . Then you will need to decide how to inject - I.M. or sub. cut. Just read all about it whilst waiting for the ampoules . I use I. M . I use 2 needles per injection A long one to draw out the B12, and a shorter one( 1” with a gauge of 25 ,) which is the finest I can find . Absolutely painless I promise you . Difficult the first time because of nerves ( large gin helped!)

Get back if you need to know anything else , I have to dash now , Best wishes .

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Hi again

Thank you so much for your reply it's been so helpful and has made things much clearer in my mind. I'm just looking at ordering everything but can you please tell me which syringes I need as I'm not sure?

Thank you again

Jo xx

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I use 1ml syringe as I use the 1ml ampoule , but I read somewhere that I should use a 2ml syringe. But the 1ml works for me .You also need alcohol swabs to clean the injection are , and also a yellow sharps box for needle disposal . ( most chemists accept these . I use Medisave.uk for all that stuff , but there are other suppliers eg Amazon . Good luck 😉

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Two things I've picked up from your initial post, Jojo197

1. You mention 'pins and needles' in your hands and feet - NICE guidelines advise 2-monthly injections if neurological symptoms present

2. You are entitled to a copy of any test results. If you can book appts, order repeat prescriptions on line, then you should be able to arrange (with receptionists) to have internet access to test results, in which case you can just print them off. Failing that, ask at reception for a print out of your results, although there may be a charge for doing this, unfortunately.

It cerrtainly sounds as if you need injections more frequently so, if your GP won't agree, then there is always self-injecting which isn't that expensive and B12 injection is actually quite cheap ;)

Good luck and hope you are feeling consistently improved very soon

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Jojo, that is exactly how I was. After a struggle my injections were brought to every 2 months but that still wasn't doing any good. Last week I saw a doctor who has brought it to every month. All my tests were good but they do not give a true picture. One doctor and a nurse said that they wished doctors would listen to the patient instead of going by the tests because they are unreliable. I was told about vitamin B12 patches and these 2 medical professionals told me to go for it and give them a try which I did and they do help. They are called Vie patches vitaminB12+10. They are on Amazon. You definitely need more injections. Can you see other doctors who would listen? Look up Martyn Hooper on Google. Hope you get the help and support you desperately need. All the best ☺

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Hi

I would like to say a massive thank you to everyone who has replied and for the advice you have given it really means alot!!!

Also it has made me feel less alone and like I'm going mad so thank you again.

Jo x

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Hi all,

Jojo’s other half here! Firstly, thank you all so much for you replies, they have all helped and given us some new things to consider.

Jo, got some blood test results today - both the B12 and the Folate both appear to be at ‘satisfactory’ level, and do not look too bad at all...sooooooo; what are missing as the symptoms remain (if not worsen)!?!

I’ve read about the ‘active B12’ v ‘B12’ In the blood...how do we know the difference?

We’re trying to get as much info as possible for the visit to the GP (two weeks away (unbelievable))!

Any advice, help, experience welcomed!

Thanks in advance

Sam

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No one has replied to this last entry by JoJo's other half blimey.

How is he?

If he's still having classic symptoms and no further forwards in trying to determine low iron or B12 or whatever all I can suggest (and I'm defo no expert-only going on my own experiences thus far) is he gets a sub lingual B12 spray if he hasn't gone down the self injection route, a good B12 complex supplement, even a liquid one perhaps, and a decent iron supplement.

If the pounding heart is the worst thing in my opinion, you feel like the end is near, problem is I think either low iron or low B12 can both kind of cause this as a lot of symptoms can crossover.

Supplements to begin with would provide all the required stuff much quicker than just food.

If he's giving his body ALL the B's and ALL the other vitamins and minerals and extra B12, with a sensible food intake with plenty of carbohydrate (to fuel all the repair work) it has got to help, better than just sitting and waiting for a GP or trying to guess?

Just fixating on one element can cause other problems I'd say, they all work together so give his body all of what it need and extra B12, and see what happens? Nothing bad I bet!!

Avoid mixing iron and any dairy products, leave around 1/12 to hours between them.

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