I’m looking to start b12 injections. Does anyone know how frequent you do them?
I’ve never been officially diagnosed with PA - I had a negative intrinsic factor twice so the doctors are adamant I don’t have PA. I’ve had tingling and burning in my feet, but my doctor is convinced it’s unrelated to PA. How can I be sure it isn’t? How can they be sure? Would an active B12 blood test help define if I am needing more b12? Also my serum b12 was of course higher at 700 the top end of the scale as I’ve been on injections. I get them 3 monthly via the Gp.
Anyone have any ideas? I am happy to self inject but how do I know for sure I need more b12 and that the tingling and burning in feet is caused by b12 as there are many other causes? I’ve been tested for diabetes and it also isn’t that but I do have rheumatoid arthritis and been in a massive flare for a few months now, which also can cause tingling burning feet.
Any help with how I can know if I have PA definitely and also any help with getting injection supplies (I’m in the UK) would be very much appreciated. Thank you
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mistygrey
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The best and harmless way to find out if you have P.A, is to have a course of B12 injections . If your symptoms improve , then you will know .nAlso your doctors should know that a negative Intrinsic Factor Antibody test is NOT proof that you don’t have P.A, . They should educate themselves about P.A. .Your symptoms are the important evidence. Please try again to get B 12 injections . from your GP . If that provves impossible ,then youbwull need to self inject B12 , which is what most of us on this forum do. . Non treatment / under-treatment of PA/ B12 deficiency can lead to symptoms that become irreversible .
Here is some information for you .
HELP FOR PERNICIOUS ANAEMIA/B12 DEFICIENT PATIENTS AND OTHERS WISHING TO SELF-INJECT B12
ALWAYS MAINTAIN STRICT HYGIENE WHEN SELF-INJECTING .
WHERE TO OBTAIN SINGLE-USE B12 DEPOT ( Hydroxocobalamin) AMPOULES
As B12 ampoules are strictly prescription only items in the U.K. we have to obtain our ampoules from reliable German online pharmacies, which are strictly controlled by the German Health authorities . These ampoules are an over-the-counter ( OTC) item in Germany ( thank goodness for their wisdom!) But only obtainable from pharmacies .
Every pharmaceutical item has its own reference number on the pharmacy site , so it’s easy to use those numbers to get straight to the item you need ,without searching .
Depending on what you want to order, here are the reference numbers to use in your search .
PANPHARMA ( previously known as Rotexmedica )
A packet of 10 ampoules of B12 Depot ( Hydroxocobalamin)
1mg x 1ml Ref no. 16199653.
Panpharma do not sell the 100 ampoule packs any longer.
The Panpharma are the most popular ampoules .
HEVERT -Packet of 10 ampoules 1mg x 2ml ref no 06078368
HEVERT Packet of 100 single-use ampoules 10 x 10 packets ref no. 06078380
PASCOE -Pack of 10 ampoules 1.5 mg x 1ml ref no 07568672
PASCOE Pack of 100 ampoules ((10 x 10 packs) Ref no 07568695
Here are German online pharmacies that will ship to the U.K. by courier usually DHL FOR €9.89 no matter how many you buy .
versandapo.de ( it is in German , so you might need Google Chrome or a translation app)
If you ask, or email this pharmacy if they send B12 ampoules to UK, they will say “no” , because they will say that are not allowed to send a pharmaceutical item to a country where that item is a prescription only item ( which is the case for B12 injectable ampoules in the U.K. ) This is correct in essence, because so many drugs are prescription only, for a very good reason .
This does not apply to B12 , for we know it is not dangerous , and cannot be overdosed . In Germany , it is an over the counter item anyhow . So , you can obtain B12 ampoules from some German online pharmacies . But do follow the instructions .
It’s really best to register . You will save time with subsequent ordering ,and they have a points system if you register . 200 points when you first order , and one point for every Euro that you spend . When you have 250 points , that represents €2.50 which you can use against your next purchase .
You register and subsequently sign in by clicking on the head and shoulders silhouette ( top right on my iPad)
When filling out the address form , it is important to FIRST OF ALL SELECT YOUR COUNTRY FROM THE DROP-DOWN LIST. The U.K. is shown in German as VEREINIGTES KÖNIGREICH . (United Kingdom) So click on that and then the computer will accept your postal code and the rest of your address . If you don’t do this , your address will not be accepted .
You need to pay with PayPal ( easily obtained online ) or bank transfer. Free of charge with online banking . £25.00 at your bank !Versandapo.de does not accept card payments from U.K.
juvalis.de is another German online pharmacy that will ship to U.K.
These sites are in German so you might need Google Chrome or a translation app.
shop.apotal.de Also sell Panpharma, Hevert and Pascoe .
Courier €19.90. Pay with card, PayPal or Bank transfer . Register and chose U.K as your country from the drop down list , before you add the rest of your address.
amazon.de ( German Amazon) is available in English ( click on the globe to change language) On my iPad it is at the bottom of the page.
You cannot use the Pharmaceutical reference numbers when ordering from amazon.de
amazon.de does not supply Panpharma ampoules.
They do supply HEVERT and PASCOE .
When you get the ampoules, they need to be kept dark and under 25 Celsius .I keep mine in the top shelf in the door of my fridge . It’s the warmest spot . On no account should the ampoules be frozen .
NEEDLES, SYRINGES , SWABS AND YELLOW SHARPS DISPOSAL BINS .Obtainable from ———————-
For I.M. injections. ( Intra Muscular ) I use a long coarse needle to withdraw the B12 from the ampoule into the syringe . I use 21G x 1 1/2 inches.
Use a 25G x 1inch needle for the actual injection .
A 2ml syringe is needed to get every last drop of precious B12 out of a 1ml ampoule .
For a subcutaneous injection ( sub-cut) use a fine short needle - 30G x 1/2 inch . I have not used this method , so look up instructions on the internet.
If you look at the packaging , you will see that sub-cut is a recommended method of injecting B12 .
SO FIRST WASH YOUR HANDS, AND PLACE YOUR INJECTION ITEMS ON A FRESH PIECE OF KITCHEN TOWEL
Open the ampoule at its weakest point shown as a spot on the neck . Wrap a swab round the ampoule to avoid nasty cuts
Failing that buy an ampoule opener (Amazon smile and choose Pernicious Society as your charity ) There are plastic ones and sturdy metal ones .
If you are Needle -phobic , there is help in the shape of a device known as an “Auto-Injector “ available from a Danish Company
I don’t use one , but you could enquire about it from members . I know that some do use this device .
There are others , but I don’t have any information. But don’t buy needles or syringes if you are thinking about it .The device takes specific sizes for different sizes
If you are sensitive , a numbing cream is obtainable from Amazon .
I use I.M.method for injecting. I use my thighs ( the outer middle third ) That muscle is called the VASTUS LATERALIS . I swap thighs each time I inject.
If you wish to inject sub-cut , please look it up on the Internet ( I believe it’s the tummy fat and the whole front of the thigh)
If you are injecting with B12 for the first time , please have someone with you, in case of anaphylactic shock ( like some people have after a bee-sting ) It is really very rare , but I feel obliged to tell you .
Do not worry about overdosing on B12 . You cannot . It’s a proven fact .
I’ve been self-injecting for 8 years , but I still remember shaking like a leaf 🍃when I injected for the first time ! Now it’s just routine.
Remember to include a good quantity of Vitamin B9 in your diet ( green leafy veg) It works together with B12 . It’s called folate in food and folic acid in a tablet. You could take a modest 400 mcg tablet daily. ( these are recommended in pregnancy . ) You cannot overdose on folate in food , but you can overdose on folic acid in tablets .
TO INJECT INTRAMUSCULARLY
Flick the ampoule to get all the B12 into the bottom .Open it by either wrapping a swab around it to avoid cutting yourself , or use an ampoule opener . Break it at the weakest point , which is marked with a spot on the neck of the ampoule
Use a 2ml syringe .(with a 1ml syringe ,it’s impossible to get every last drop of precious B12 out of the ampoule!) Fix the withdrawing needle on the end of the syringe . Pull out the plunger on the syringe and SLOWLY inject air into the ampoule . Now pull out the plunger and all the precious B12 will be sucked up into the syringe . Now take off the withdrawing needle and replace it with the injection needle .. Now gently press out the air in the syringe , until a tiny bead of red B12 appears on the needle tip. 💉
YOU ARE NOW READY TO INJECT INTO THE VASTUS LATERALIS MUSCLE. ( it’s nearest the surface of your thigh in the middle outside third of your thigh - look up info online .There are also diagrams of the thigh and the muscle ) Inject at 90 degrees .
For sub cut please refer to internet , as I’ve not used this method , or ask members on the forum .
After injecting please dispose of needles into a yellow sharps bin . When full, ask your local council how you can dispose of the full bin . Disposal varies in different areas . I can take mine to a local chemist .
Sometimes Pernicious Anaemia Patients suffer with “gut” problems , tummy pain and bloating etc . This happens because P.A. patients have low or no stomach acid . Hypochlorhydria/ Achlorhydria. ( due to the destruction of their parietal cells by the Intrinsic Factor antibodies ) The intrinsic factor is also destroyed . This low acid environment allows bad bacteria to flourish, which upsets the flora ( good bacteria ) in the stomach . Some P,A. patients find that taking an acidic drink like diluted organic cider -apple vinegar , lime / lemon juice with meals ,especially protein meals , really helps this .
The greatest help for my “gut” problems was a probiotic called Symprove , a water-based liquid . But there are probiotic capsules The probiotic encourages the growth of the good stomach flora . Also good to take after a course of anti-biotics , which destroy all bacteria good and bad .
Natural probiotics work well e.g. Organic sauerkraut , real yoghurt, kimchi and kefir .
Since getting the B12 treatment I need by getting adequate B12 injections, and the probiotic Symprove, the gut problems have disappeared . I no longer need Symprove ..
It is a good idea to eat smaller meals more often if one has low stomach acid ( as Pernicious Anaemia patients do ). Also chew food very thoroughly, giving the enzymes in saliva a good chance to start the breakdown of the food .
In severe cases of very low or no stomach acid ( Hypochlorhydria / Achlorhydria ) a capsule called Betaine Hydrochloric acid with pepsin will increase the acid in the stomach .( Amazon smile) Taken at mealtimes , can be used , but best to ask a nutritionist about dosage . It will vary according to how much stomach acid you have . There are instructions about dosage online .
A modest multi-vitamin and mineral tablet can also be helpful , as a low acid stomach is not good at breaking down our food to make minerals and vitamins available for absorption.
STOMACH ACID IS VERY IMPORTANT. WE NEED IT TO BREAK DOWN OUR FOOD , SO THAT WE CAN ABSORB ITS NUTRIENTS .
Hi thank you so much for all the information. I’ve copied it all and saved it on my phone. Is there any way to persuade my doctor to try more frequent injections as she was adamant in not giving me them.
Also how often should I self inject if I start injecting myself?
wedgewood has excelled herself with all her top quality information.
Great idea to save it and go through it several times to get the full benefit from it.
Optimal Injection Frequency
How long is a piece of string? 😃
We are all individual, with different requirements, so it is better to give you some outlines to work from rather than a set frequency. There is no "one size fits all" option!
A lot of my advice comes from knowledge of the science of nutrition in animals, augmented by what people have said here over the years.
It seems that our bodies cope better with gradually increasing frequency rather than starting frequently and reducing the amount given. I know this is this is the opposite of the NICE guidelines, but we already know that these are not fit for purpose.
Nerve healing takes months, and you can expect some benefits to be happening even 18 months from now so the results are not immediate, even if you have gallons of the stuff.
The other thing is that all our vitamins and minerals are interlinked and interdependent so an excess of something can up-tip the balance and cause problems, just as much as a deficiency does. Our bodies are brilliant at compensating but if they need to do this, it is putting them under a degree of pressure. I know you want to get the optimal rate and this is why you are asking this question.
The best guide, by far, is to go on symptoms: see what works best for you and be prepared to adjust up or down as you need to.
I suggest you start at once a week and see how you get on. This is the same as the Dutch loading protocol and I believe this works much better than the UK one.
The Dutch have put a lot of research into B12 over the decades so this advice is based on sound science. If I could start again, this is the strategy I would adopt in the first instance.
If you are getting improvements and feel you are making progress but your symptoms are starting to creep back in on say day 5 and it feels like your batteries are going flat then trying injecting every 4 days to keep your system in a plentiful supply: you don't want to limit your healing potential by getting short on a regular basis.
If you feel better injecting, for example, every other day that's fine - lots do. There are quite a lot of us who inject every day. I have been doing this, using higher strength ampoules, for over 7 years now to very good effect and I know several people who inject twice a day because that's what suits them.
Be aware that if you allow extra healing by providing the necessary B12 for it, then you will need additional vitamins and minerals as building blocks for the new cells so, as Wedgwood says, it is usually beneficial if you take a broad spectrum vitamin and mineral supplement every day, as well as ensuring your diet is as good and broad as possible.
(Caveat on broad spectrum vitamins and minerals - unsuitable if you have haemochromatosis, take anticoagulants or have too high iodine).
If you inject frequently you are likely to need additional folate, potassium, magnesium, iron and vitamin D - all ideally from your diet.
I must run now - I have to get to work - but good luck and please ask more questions and let us know how you are doing!
I’ve got on and off burning feet and sometimes feel like I’m walking on a sponge or wearing a sock on my lower leg.I asked my Gp for more injections for b12 incase that’s causing my peripheral neuropathy and she refused them. She said she really doesn’t think it’s b12 causing the neuropathy because my recent level was high on testing and that the intrinsic factor was negative. So not sure what to do now I will have to self inject but I don’t even know if b12 causing it as it could be anything. I’m also in an RA flare up which potentially could be causing this too.
The problem aswell is I was never properly diagnosed with b12 deficiency. My Gp started me on injections around years ago as I had had fatigue; but I had a negative intrinsic back then and now a recent negative one again. I’ve got various other health conditions that could be causing exhaustion and the neuropathy: Sjogrens, underactive thyroid, rheumatoid arthritis so there’s a lot going on: but my gp refusing me more injections to see if that helps the neuropathy at all seems very harsh as it’s something they can do to help me.
Sounds like you've exhausted most of the possibilities with the GP.
Can you ask for a referral to a neurologist?
The spongey burning feet is a common b12 symptom and suggests possible nerve damage. I would try to self inject eod for one month. You will know after a few weeks if its helping or not.
Hi one thing she did actually doThe Gp was refer me to a neurologist however with the nhs waiting lists as bad as they are here in Scotland that could see a very lengthy wait many many months. It just frustrates me as the Gp could
Potentially be leaving me with nerve damage and they don’t seem too bothered? If I self inject what vitamins and dosage do I need to take is there a list of the co factors and the dosages? Thank you
Its a hard truth to accept that medics don't understand how b12 works. And since science is based on testing numbers, not symptoms, if the numbers are fine then you are fine. And so your symptoms are in your head/anxiety/pandemic/someone else's problem to sort out.
And so this opens up a world of complications that a simple blood serum test could not possibly account for.
Testing is inadequate and knowledge is inadequate. Surely, in the 21st Century, medics know about nutrition and vitamins?
I'm afraid they don't.
So you should invest in self injection using 1mcg in 1ml Hydroxocobalamin from Germany pharmacies, injected into vastus lateralis or deltoid muscles every other day.
Wedgewood is the knowledge on supplies.
Co-factors are regular multivitamins with all the B vitamins and 400mcg B9 (folate).
I think a bit too much emphasis is put on co-factors but a multivitamin or multimineral should see you through. Plus a diet rich in b vits and potassium.
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