Trying to get injection early - Pernicious Anaemi...

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Trying to get injection early

sue_higgins54 profile image
27 Replies

I have just spoken to my surgery to see if I can have my injection 2 weeks early as I am going gone holiday.at the end of my 12 weeks I get very tired, mentally confused & clumsy. I also suffer from Obstructive Sleep Apnea. As I am spending my holiday on a boat I feel that it would be a great benefit to have my boost early but the doctor dismissed it as too early & I will have to wait. This was done without even a glance at my medical records. I am trying to use patches but they have minimal effect. Has anyone any suggestions of anything that would help? Thanks

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27 Replies
JanD236 profile image
JanD236

My GP was good and listened to me, prescribing monthly injections. However, much as that improved things, I now self inject weekly to supplement those injections and live life on an even keel. It’s wonderful not having that tailing off of energy in the run up to the next injection.

I’m not suggesting you need weekly injections, I think we all have our own individual needs. However maybe your life could be improved with more frequent that every 12 weeks.

If you’ve tried your doctor and he won’t provide more frequent injections then self injection is likely to be the best option. Some people get some help from sprays or sublinguals but many don’t, myself included.

sue_higgins54 profile image
sue_higgins54 in reply toJanD236

Thanks for response. I am going to look into self injection. If I could have them every 6 weeks I think I would be ok. On this occasion, I just feel cross that they won't give it me two weeks early. I will be sleep most of my holiday!!

Foggyme profile image
FoggymeAdministrator in reply tosue_higgins54

Hi sue_higgins54. Where are you going on your holidays? It's possible to buy B12 injections over the counter in some places (especially in Europe) and many pharmacists will do the injections for you.

As JanD236 says, high dose sublingual tablets, nasal drops or sprays help some people, but they don't work for everyone (available on Amazon - sprays from Holland and Barrett too).

Another thought - not something I'd usually advocate but if it's a one-off to save your holiday - health spa's often offer B12 injections or a better bet, you could get one from a private GP (but both quite costly 😖).

And shame on your ill-informed GP.

I also had trouble getting injections frequent enough to get and keep well, so I now self-inject inbetween the measly GP allowance - works for me 😉😀.

Hope you manage to get something sorted for your holiday and post again if you need advice about where to safely buy injectable B12, syringes and needles etc.

👍

sue_higgins54 profile image
sue_higgins54 in reply toFoggyme

Thanks for your response. Definately going to look into self injection when I get back fro Scotland. I've now arranged a telephone appointment with the GP to try to get him to understand my situation.

Coachlady11 profile image
Coachlady11 in reply tosue_higgins54

My GP also refused to give me injections early or more frequently so I went down the self inject route

It’s the best decision I ever made so if I’m going in holiday I give myself a dose earlier and it makes a massive difference x

sue_higgins54 profile image
sue_higgins54 in reply toCoachlady11

Thanks I think I will have to do that

in reply toCoachlady11

That's what I do. Supplement the 'not often enough' injections my Endocrinologist allows me.BFD! I am having trouble getting enough syringes, though. Am in the US. Any info? Please PM. Just joined this forum. Already belong to AtrialFibrillation and ThyroidUK, And am a retired nurse. Thanks irina1975

DeeD123 profile image
DeeD123 in reply tosue_higgins54

Hi. I’ve just had same problem only with a nurse. In the end I told her I wasn’t leaving the surgery without it and didn’t mind putting a complaint in writing. Got the injection.

sue_higgins54 profile image
sue_higgins54 in reply toDeeD123

Well done! Might have to resort to that!

DeeD123 profile image
DeeD123 in reply tosue_higgins54

Good luck. This forum has give me the courage to smile politely and be firm. Seems to be working at the moment. 👍

Foggyme profile image
FoggymeAdministrator in reply tosue_higgins54

Hope your GP listens to you sue_higgins54.

Just in case he quotes that oft mistaken view that B12 is toxic, addictive, a placebo, blah blah blah...here's some information to help:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Just in case they say they can't give it earlier because it's not licenced (or they're not allowed too)...well...rubbish...

Point out that those with neurolgical symtpoms have injections every other day - sometimes for many months - and that the following (licensed) maintenance regime for them is injections every eight weeks.

This prescribing information is contained in the BNF (they'll have a copy on their desk - but will have to read further than usual - intensive B12 treatment is mentioned in the third or fourth paragraph down). Also note...prescribing information is for PA (not sure if you have it) and some GP's use this as a reason not to treat those with B12 deficiency accordingly. More rubbish. The treatment for PA is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency (whatever the cause) is the same as the treatment for PA).

Here's a link to the BNF in case you want to take a peek yourself:

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

And here's a research paper from an American Haematologist which states (in the last paragraph) that many people with B12 deficiency self-inject B12 more frequently when GP prescribing is insufficient to keep symptoms at bay and keep well - and then there's no reason to discourage more frequent injections - or, indeed, self-injection😉😀. Last paragraph in the paper, as follows:

'It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice.'

(Note: paper speaks to Pernicious Anaemia but, by logical extension, also B12 deficiency - whatever the cause).

Here's the full appear in case you want a peek at that too 😉:

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

Good luck with your ridiculous GP.

👍

sue_higgins54 profile image
sue_higgins54 in reply toFoggyme

I am diagnosed as Pernious anemia & I have asked to be put on 8 weeks - even quoted NICE guidelines. When first diagnosed I had nureological symptoms, so much so that he referred me to a neurologist, who tested me for MS. Thankfully I didn't have MS bit to control my symptoms I was put on Gabapentin. The GP up this dosection after a fer months as it wasn't under con trolley. Now he says I don't need it every 8 weeks as my neurological symptoms are now contoured. I feel like I am going round in circles!

Foggyme profile image
FoggymeAdministrator in reply tosue_higgins54

That’s just nonsensical...how on earth can your GP think that taking Gabapentin (a quite powerful drug) to control (and mask) the symtpoms of B12 deficiency is an acceptable or better option than taking B12 injections (dah...to properly correct that deficiency).

B12 repairs and heals...and hopefully keeps us well so that we don't need powerful pain relief drugs because of neurological damage.

Madhouse medicine! Crazy GP!

Yep...if no luck with your GP, suggest you follow-up on self-injection.

Who knows. If you have B12 injections at a frequency that meets your individual needs, you may not need the gabapentin.

Not rocket science is it - GP take note (oh how I wish).

👍

P. S... you might find this PAS poll interestig:

healthunlocked.com/pasoc/po...

sue_higgins54 profile image
sue_higgins54 in reply toFoggyme

Thanks I don't see why it is such a battle!

petal02 profile image
petal02 in reply tosue_higgins54

Sorry if this is duplicate post, my earlier reply seems to have disappeared. Blue Horizon offer a U.K.-wide B12 injection service. For £75 they come out to your home or workplace, and give you an injection. Not cheap but something to consider if you're getting a bit desperate!

sue_higgins54 profile image
sue_higgins54 in reply topetal02

That's really good to know. I think i'm going to have a private/self administered injection inbetween my GP ones. It takes all the hassle out of arguing with the doctor. It is just sad thst we have to go through all this to get the right treatment.

petal02 profile image
petal02 in reply tosue_higgins54

I know we shouldn't have to do this - but there are lots of private clinics that do B12 shots, I often have an extra shot between my GP ones.

LWhelan profile image
LWhelan

I find sublinguals if you put under your tongue and leave for 45 minutes work a treat.

petal02 profile image
petal02 in reply toLWhelan

Which sublinguals do you use?

sue_higgins54 profile image
sue_higgins54 in reply topetal02

Thanks

sue_higgins54 profile image
sue_higgins54 in reply tosue_higgins54

I've been told that because I have Pernious anemia, not just B12 deficient taking things orally will not be effective & it has to go straight in a muscle.

LWhelan profile image
LWhelan

Solgar methylcobalamin

LWhelan profile image
LWhelan

5000 mcg

silversue6 profile image
silversue6

you must belong to the same surgery as me!! I did find the sublingual drops helped me before I persuaded the Doc to let me have a B12 injection. I found that one week after my injection I was back to feeling so weary and low again. It was my first jab but he won't agree to giving the next until 3 months.

sue_higgins54 profile image
sue_higgins54 in reply tosilversue6

Went you start on B12 injections you get 6 injections over 2 weeks - it's called a loading dose, then you go onto the 3 mths interval. Get your GP to read the NICE guidelines (if you are in the uk) there is also loads of information on here.

silversue6 profile image
silversue6

I did try but he sent me for another blood test instead 'because he didn't want to poison me!' however, the blood test revealed my B12 was still up - 1018 (was 325 originally before the jab and he said I didn't need B12). Yes, I'm in UK. Almost impossible to get a real appointment recent year, only telephone appointment.

sue_higgins54 profile image
sue_higgins54

Ask him if that is your full B12 count or your active B12 count.

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