hi everyone.. hope every one is enjoying the sun.. I’m after your expert advice again guys !! Why is it that even though I’m having injections every 2 months and taking vitamin d, and folic acid I still continue to get new symptoms ? Particularly neurological symptoms!! My skin is always so itchy, my pins and needles / numbness that used to only happen at night, now happen in the day as well .. particularly my left big toe !! And last night started having crawling feeling all over my head !! Such a weird sensation!! Whilst out on Saturday I just out of the blue got pins and needles whilst walking through the whole of my foot up to my knee !! Feeling so scared of all of this that is happening.. I’m confirmed PA .. could it be that the b12 injections aren’t working ? I’ve had a recent blood test and my result was over 3000 !!
Very grateful for any advice
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Lowblow
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If these symptoms are as a result of your PA then it’s pointing towards you needing more frequent injections.
My injection frequency went from every 2 months to monthly then weekly and for the last few years I’ve settled on twice weekly. At this frequency I’m able to live a full active life without the exhaustion and other symptoms that I’d suffered with less frequent injections.
It’s not known why some people need more frequent injections than others.
Yes I totally agree. I started at 2 weekly 1,000mg injections and I’m now waiting for my Dutch doctor to get back to me about increasing this to 3 times a week! And yes I recon I’ve had this for at least 15 years - burning jangly feet especially at night when it really messes up your sleep. But it’s definitely not as severe as it used to be.
I think doctors who understand PA are as rare as hens teeth! In several years of reading this forum I’ve read few, if any, posts praising a doctor for treating PA well. Although to be fair, maybe those who feel well treated by their GP don’t resort to an Internet forum.
Through a Dutch friend of mine I found an excellent Dutch hormone specialist who is completely open to PA
I live in Ireland so had to locate where to get my bloods analysed, but from reading all your comments, I can’t say how happy I am to have found her. Anyway Lowblow that’s her website above and if I can work online with a Doctor from Ireland then there’s no reason why UK people can’t.
I aree. You probably need to up your dose. I do EOD, it's been 2 years. I went from my feet and hands being numb to never having that problem and exercising 1 hour a day. Itchy skin is not something I have ever had, that might be another deficiency.
Your body has been starved of B12 for years. For me it was at least 3 years.
It now needs to heal in its own time. It won't suddenly go back to normal because the levels are high, despite what Doctors think.
I personally found that a collagen multivitamin helped to improve dry and itchy skin. Also lots of VItamin D. Get out in the sun every day. It will help.
Slowly, slowly you'll get there. Just have to be patient.
Have you managed to go back to the GP to request every other day injections until no further improvement?
You mentioned in a previous post you got 6 doses. That isn't enough for neurological symptoms.
You must go back to the Drs and let them know that NICE guidlines say every other day for neurological symptoms. If you're struggling with neuropathy etc, you must fight for more injections.
also have you had neuropathy? How do you get diagnosed with this ? My doctor is adamant that my symptoms aren’t related to b12 deficiency which is really hard
Is your Doctor a neurologist? Because I'm not sure why they'd be able to rule out B12 deficiency?
That's the domain of a neurologist. And they need to refer you to a neurologist for nerve conduction tests.
It does make me angry that Doctors are clueless about B12!
But what I would say to you is that there is a syndrome of B12 recovery called 'reversing out syndrome'. And it's where things get worse before they improve, sorry to tell you.
I had neuropathy and an MRI scan to see if I had MS which I don't they did find I had broken my neck donkeys years ago and had a cervical spinal stenosis, after seeing a neurologist by which time I was self injecting B12 every other day. The neurologist was quite happy with the injections as I explained it may help with repair of the myelin sheath around my spinal cord, and my numbness and weakness in my legs. I haven't looked or felt better in the past 40 years as I do now. It does take a couple of years to really make a difference. So hang in there.
I only suspected B12 deficiency in 2016, my mother was diagnosed with PA around then and her mother was diagnosed with PA before the second world war, my father was diagnosed around 1995. To be honest I'm still recovering, I've tried to extend the period between injections but symptoms soon reappear, mainly involuntary jaw movement which end up with a bleeding tongue or inner cheek or lip, then ulcers. So I inject every three days and am happy with that.
Hiya … yes I have been back and been told no !! I’m in he process of writing to my doctor to request this again as my symptoms are increasing and getting worse !! It’s very stressful fighting them constantly when you feel unwell !! I’m writing to them and including a copy of guidelines saying every other day !! Do you think that’s why my symptoms are not getting better despite high level in blood test result .. I’ve been deficient since at least 2019
I'm so sorry to hear that. It is horrendous to be ill and have to work so hard to get help. Not easy at the best of times but what with pandemic and NHS (Assume you're in UK?) difficultes too it's just too much.
Sounds like you're doing the right thing - do fight them and send a copy of the guidelines. Shame them into it, there's no other way. Make them nervous and get their backs against the wall.
It is counter-intuitive but you cannot take high blood levels as 'enough' of a reason to stop injections. It's why all the B12 charities say NO TESTING after injections. Otherwise Doctors do this - they think they're high enough and stop the injections.
So if that is the case, why would NICE offer guidelines of every other day until no further improvement? They are the experts - GP's are not.
For example, if you were to be on every other day injections 'until no further improvement' then there's no point in Doctors looking at your levels. Or, indeed, you looking at levels. Once loading injections start, you need to just keep going until your symptoms aren't improving anymore.
My levels have been in excess of 2,000 for a year (off the scale), I inject once a week and take sublingual every day. If they could measure them (which they can't because they're off the scales) they'd probably show as 50,000 😀.
It's almost like we have to ignore logic and science and treat the human body like a complex organism that will take time to heal.
And if the guidelines say 'every other day', they have a legal obligation to follow them. Otherwise, they are being negligent.
Do everything you can do keep pushing. It's your health, your body.
If you find it impossible to increase the number of injections , my advice is to self-inject . This might sound horrible to you , as it did to me initially . It’s is scary to have to fight these ignorant doctors when you are feeling massively unwell . YOU CANNOT OVERDOSE ON B12 INJECTIONS . They are cheap ( about £1.60 everything included - ampoule of B12 , withdrawing needle, injecting needle , syringe and swabs . ) I’ll send you information , so you can consider it . You can use the Intramuscular method ( doctors use this ) or the subcutaneous method ( shorter needle into the fatty layer of the skin . Both methods work .
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 please 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 .
There is nothing to add. I too think it’s best to source your own B12 and be independent of prescriptions - Wedgewood, I love your advice(s)!
Lowblow : Besides the 'reversing out syndrome', you very, very likely need more frequent injections! I had very eery sensations all over my body, like electric waves running through me. That all relieved after self-injecting every other day for a while. I think this is what you should do if you have those symptoms.
And take a B complex alongside your injections. All B vitamins need each other to do their job.
If you have PA it is very likely that you are struggling with low stomach acid. This in turn leads to malnutrition, so keep also an eye on iron (lab results!), magnesium, vitamins ADEK.
Exactly what I do - self inject daily and take oral Folic Acid daily too as cofactor for absorption. Cannot overdose as water soluble and pee'd out. I'm now in control and not deholden to doctors. Best thing I ever did. Seen so much improvement over the past 3 years.
i’m so glad to hear of your improvement . But it’s truly shocking that our doctors are so ignorant and dismissive of our condition . It’s actually shameful . Think of the others who don’t have the knowledge or capability to access PAS or this forum . etc It makes my blood BOIL.
Thank you and thank heavens I took on my own health through research. I couldn't agree with you more. The treatment and lack of knowledge is appalling. This condition (along with other autoimmune conditions) is sadly lacking and was treated better and with more understanding in the 1950's than it is now. No wonder these groups and forums are increasing rapidly with very concerned people looking for answers.
B12 deficiency apparently cannot be treated with lasting results unless you treat B2 Deficiency first , which most of us are most likely. We all might get tested for B12 and B9/11/ Folic acid but it’s another thing to also be tested for the other vitamins B’s. B12 injections help to start with but there comes a time that the body has too much that cannot be taken up in the Methylation process, your serum level shows high, GP is happy but we feel worse. You need the other vitamin B’s ( and some other cofactors) for the process to be beneficial.
You need oral Folic Acid (B9) as a cofactor for B12 injection absorption if you have PA or are B12 malabsorption deficient. That is the true way for your body to access and supply b12 to all cells in your body aiming towards good healing.
You cannot overdose on intake of B12 injections (or Folate - both water soluble)
You are talking about a b12 serum level and not a b12 active level that is cellular based and able to access all cells in the body and not just float about in the blood (not doing any good but raising b12 reading) This happens if you do not have a high enough Folate level to support the chemical act of processing absorption of b12 injections as the Folic Acid interacts with e B12 - together to make this process possible. Just having one or the other will not support adequate absorption or healing from symptoms of PA or b12d. It is required when when we are not able to absorb b12 either from food or via tablets.
Other B vitamins will support this whole system but it is not vital to incorporate them before B12 and B9 introduction as these are the the most critical vitamins to commence via the appropriate route before the addition of any other B vitamins - these can then be taken as part of the support system as individual supplements as required.
To be noted: Your b12 level should be over 1000 for healing from symptom purposes. It is fine - mine is way over 2000 - no obstacles - just healing. If you are having B12 injections don't let your doctor retest as they will freak out about high level and then reduce or stop your medication. They have no concept of b12 deficiency or autoimmune disease at all so don't be guided by them as most (95%) will supply you with very poor information concerning your health.
Do you notice an improvement when you have the injections and then it goes by the time you get to your next injection and the symptoms get worse. If yes that suggests that you need B12 more frequently. If not then it suggests that there is something else going on. There are a large number of causes of neuropathy and B12 deficiency is only one of them.
Thank you for your response, I do feel slight improvement in some of my symptoms but I continue to get new symptoms too .. my knees and legs were really stiff and painful a while ago but they don’t hurt now but there still stiff at times .. however my feet now hurt a lot and feel like I’m walking on glass !! I’m only taking b12 , folic acid, ferritin and vitamin D.. are there others to take that will help with the workings of b12 !! Somebody has mentioned b2 and I’m sure I’ve heard magnesium too ??? .. my pins and needles and numbness are definitely getting worse
If you are actually taking folic acid, you just might be better with a methylfolate, but start low and slow. Made a big difference to me. I also use sublinguals of all 3 - methyl, adenosyl and hydroxo cobalamins. Magnesium is amazing so worth a try - again, slowly, and maybe on skin for good absorption but without affecting gut too much. Better You or similar.
Have you kept a diary of symptoms to see if there are specific improvements when you have injections and then they wear off and things get worse with the wearing off.
If the timing of improvements doesn't correlate to injections then there is probably something else going on.
I've read through all of the responses and they are all spot on and my suggestion is to try those...
Start with more frequent injections
Blood serum levels of B12 are meaningless mine have been off the charts above 2,000 for two years now.
and I certainly agree with Gambit that it could be something else causing this.
I can only offer this from my own experience...consider changing B12 type. I started out for the first year with injections of cyanocobalamin 1,000 mcg weekly as I'm in the US. With that I was experiencing limited improvement in my neurological symptoms. After a a year I switched to methylcobalamin. Now most of my symptoms have drastically improved. Just a thought as we all respond differently to these forms and I've scoured the universe for which form is best but I've found no definitive data.
Of the three forms cyanocobalamin, hydroxocobalamin and methylcobalimin the latter is the most bioavailable form. But it does have drawbacks as it is not as readily available, it is probably the most expensive form, it is less stable in that it is more sensitive to light and temperature...it must be kept refrigerated and the shelf life is much less, at two months after opening.
You can purchase Methylcobalamin in powder form which has like a two year shelf life until opened. You just mix with sterile saline for injection. perniciousanemia.org/b12/in...
I purchase mine a preloaded syringes from a compounding pharmacy in US. that may not work for you if you are in UK or elsewhere as it must be kept cool during shipment.
Wishing you wellness, Rex
It is a real conundrum is peripheral neuropathy. I developed it well after starting with b12 injections. I found I needed something to stop the tingling and stinging in my feet, particularly the left one. After discussion with my GP I was prescribed a reasonable supply of 30mg codeine with worked if I took two during evenings when relaxing. A neurologist suggested I might try amitryptiline so I did and rejected that when my forearms went bright pink. Then just a few months ago I asked if I could try gabapentin. I am very pleased with it and find three or four 100 mg capsules at roughly eight hours spacing work wonders. It seemed an awesome step at the time but a nurse practitioner friend suggested them. She takes a much higher dose to deal with peripheral neuropathy she has suffered with for years following a serious car accident. I still need the b12 injections at frequent intervals but the combination. Is making life so very much better. I did develop Type two diabetes, low on the scale though, so peripheral neuropathy is a complication of that. I maintain I was having the problems long before even the b12 deficiency was diagnosed.
It would be good to be able to discuss it with the GP though.
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Am I still not absorbing iron?
Should I be getting more B12 injections?
where to buy ampoules please, and why does it sting more when I SI than when nurse does it?
