my doctor just told me it’s placebo effect having tiredness, pins and needles, dizziness etc before having my injection at the 12 week point. I’ve never gotten more frustrated and angry at a doctor on the phone in my life. He also said b12 levels don’t drop until after 2 years?
How do people get their doctors to listen to them? I’ve had to resort to getting quite angry towards them as they make people feel like symptoms aren’t real? Any advice please
Unfortunately, the sad truth is that most of us just learn to look after ourselves and learn about our condition and treatment options, rather than putting up with their ignorance! Battling to get what we need is tiring, and constantly banging your head against a brick wall rarely does any good.
There are some good Docs out there, but they are few are far between.
My G.P. told me that one jab every 12 weeks will cure the deficiency and that any symptoms left were due to anxiety. Another told me that I couldn't possibly have P.A., as my levels were too high - yeah, cos your nurse gave me a jab last week, then you checked my B12 levels a few days later.
The only health professional that I've come across that knew what she was talking about was a nurse who herself had P.A. and stated as soon as I walked into the room that I must self inject because I'm too well! Sadly, she was only covering for maternity leave and I never saw her again.
I never was able to get my doctor to listen to me . It’s more difficult when you don’t feel well . I had to give up and start self injecting , which I’m still doing 10 years on . I suggest that you do the same . There is so much ignorance shown by doctors , it’s very disheartening , to put it mildly Yes we all get our B12 depot (Hydroxocobalamin,) from German online pharmacies , and inject as often as necessary to keep symptoms at bay . You cannot overdose on B12.
How to obtain B12 single-use ampoules from reliable German Health Authorities approved Pharmacies.
The following German online pharmacies will deliver Vitamin B12 DEPOT ( Hydroxocobalamin) single use ampoules to U.K. In Germany, these ampoules are obtainable without a prescription, but can only be sold by German Health authority approved pharmacies .
Some pharmacies stopped supply U.K. because they didn’t want the extra paperwork involved by U.K. no longer being in the EU.
versandapo.de ( in Leipzig) Site is in German. Use Google Chrome for translation. This is usually the best value pharmacy . U.K. is “Vereinigtes Königreich.” on the drop down country list .
Courier cost €9.99. no matter how many you order.
Versandapo also award “ plus points” if you are registered . You are awarded 200 points when you register for the first time. Thereafter you are credited with 1 point for each Euro than you spend . 250 points represent €2.50 , which you can redeem against your next purchase . You must log on every time in order get your points or redeem them.
apohealth.de( in Munich) Site available in English,( Union flag 🇬🇧 bottom left on my device) courier cost €20.00 for 10 packets of 10 . Lower cost for fewer packets
apotheke-marienbrunn.de( in Leipzig) Use Google Chrome for translation . Also deliver to Australia , New Zealand and USA. Drop- down country list is in German and U.K. is called “ Vereinigtes Königreich Großbritannien und Nordirl” .
juvalis.de Use Google Chrome for translation.
fixmedica.de Obtainable in English( but delivery costs €45.00 !!!)
First of all register with the Pharmacy
When filling out the address form, you will see that the country is already filled out with Deutschland / Germany .
You must change that to your own country by scrolling down the drop- down list to U.K. ,United Kingdom , Vereinigtes Königreich Grossbrittanien , etc, how ever it is expressed. Otherwise, your post code and the rest of your address will not be accepted , and you will be tearing your hair out !!!
amazon.de also sell Pascoe and Hevert, but depending on the supplying pharmacy, may or may not deliver to U.K.
You can’t use the Pharmaceutical references numbers when ordering from Amazon.de. You must use the brand names .
The following brands are usually available .
PANPHARMA ( formally Rotexmedica) 1x1ml ampoules B12 DEPOT ( Hydroxocobalamin ) Packet of 10- 1mg x 1ml ampoules
Pharmaceutical Reference number 16199653
Most popular item. Good value , but often out of stock . You can be reminded when they are back in stock by leaving your email address in the box provided .
—————————————————————————
PASCOE B12 DEPOT packet of 10 —1.5 mg x 1ml ampoules .Reference number 07568672.
Packets of 10 x 10 ( 100 ampoules ) Reference no. 07568695
The Pascoe are much cheaper per packet if you buy the offer of 10 packets ( 100 ampoules) If you inject weekly or more frequently , you will be covered . Other wise if you don’t inject so frequently, some ampoules may become out of date .
—————————————————————————
HEVERT B12 DEPOT 1mg x 2ml ampoules 1 packet of 10 ampoules reference no. 06078368
HEVERT B12 DEPOT 1mg x 2ml ampoules 10 packets ( 100ampoules ) Reference no. 06078380
It’s easier using the Pharmaceutical Reference numbers to order from the Pharmacies . But if ordering from amazon.de use the brand names . Reference numbers not accepted .
The above mentioned Pharmaceutical companies also produce Vitamin B12 ampoules ( Cynocobalamin) Which can also be used successfully . But should not be used by patients who have the eye condition known as LEBERS . Cynocobalamin needs to be injected more often than Hydroxocobalamin. Cyno is cheaper than Hydroxo. I haven’t got the reference numbers for Cyno .It is the most commonly used b12 ampoule in the USA.
When ordering , I always enlarge the photo of the packet and make sure that I’m ordering the correct B12 Depot (Hydroxocobalamin)
It’s best to take a modest daily folic acid tablet say 400mcg as it works together with B12 .
PLEASE BE AWARE OF THE FOLLOWING .
Now that the U.K. has left the EU , and therefore the single market , there is a a limit to the value of the goods that can be ordered before VAT is due .That tax is applicable if the value exceeds £135.00(roughly €158.00)
But this will vary slightly , obviously depending on the exchange rate . The value includes the delivery cost !!! . On top of that, Royal Mail charges £8.00 for handling !
I’m not sure how much the VAT is , but I think it’s about 20% of the value of the order . But please look it up . A member was quite shocked at what she had to pay when she had innocently exceeded the limit . YOU HAVE BEEN WARNED!
With best wishes .
Hi Ellamae2,
Welcome here. It is worth becoming a member of the PA Society to have accurate information which can be passed on.
Of course, it is the placebo affect. 🙄 It is quite similar to saying, I boiled a kettle and there was no steam.
On our journeys, there are neutrons, electrons and plenty of morons.
Many of us follow The wedgewood Method. However, if when having a telephone appointment or face to face in the future and you feel like you are not being heard, then state the following in an even tone :-
‘Are you discriminating against me on the grounds of age (or gender) ?
The other person will begin to panic. Their tone of voice changes and they can be grasping to find words.
The first time I did it, I hung up the phone and laughed raucously. If I had told the doctor, Watch out, boyo. They would not have really taken me seriously.
Best wishes
May your doctor come down with B12 deficiency and a doctor with views like his own 😡
I'm not an unkind person but I've wished a b12 deficiency on my GP (under my breath) many times!🤣
😂
Ditto! The amount of time I've spent banging my head on the 'wrong door' only led to more stress and anxiety. Always better to self educate then self-treat if you want to keep your sanity and health intact.
Your doctor doesn't seem to know what the placebo effect is let alone that your symptoms are entirely consistent with b12 deficiency which they already know you have. Their behaviour seems to be some mixture of indifference and ignorance.
I follow Wedgwood's advice and am well and free of such nonsense.
I've had many many experiences with G.ps,nurses, HCAs and neurologists ×4.and pharmacists
Once I've got a nurse to write on my notes wherever she feels fit my B12 regime clearly ,it's really helped.
I've met one nurse in my new surgery who did this
( had to change as old surgery closed )
Simply
It's prescribed/ santioned and needs to be delivered .
K used wording when challenging a pharmacy assistant who removed my prescription 3 times....??!!
Under whose authority did she do this ??
Gps , l know in the first 5 seconds if getting nowhere......move on
Others listen and prescribe .
Most importantly have an open mind .
Nurses have exasperated me the most .
One b12 deficient herself admitted she needed more injections
Seemed to resent I'd achieved to get them ???
Some refusing to inject me
Some simply meddling getting the Gp on duty involved
Quoting noone needs more than 3 monthly.
A handful of nurses genuinely interested and want to know more .
There's 2 now I've been through it all with again .
I stick with them.
It is exasperating .
In the past I've got teary .
Far too exhausted to get angry .
That was in the early days
Broken record . Monotone
Now I'm a broken record .
Use as few words as possible.
Offer information from PA for professionals to them.
Doctors that are open to listening and learning are there.
Alot are stuck in limited knowledge .
Want 'back up ' to cover their backs with prescribing 'off licence '
Strangely not though with drugs used??
As is common place .
The phone was put down on me twice stating I was being rude and aggressive by a receptionist and the practice won't tolerate this.
That made me the most mad .
It took alot of energy with this person NOT to be .
I simply asked then to listen to the the recording if necessary.
The phone was never put down on me after that .
We are dealing with pharmacy I.T systems that kick anything out of a 3 month b12 frequency of the system .
So back to paper rather than electronic prescriptions for me !!
G.ps that don't accept B12 deficiency can cause such severe symptoms. So put other diagnosis on you lije depression or anxiety .
Consultants because we don't fit criterias they have discards you.
The main thing is to be listened to .
Believed.
I constantly was saying if not B12 deficiency what is causing the symptoms??
Kept saying yes of course I'm anxious but that came after and was not the cause.
Who wouldn't be if ill.
Also is a symptom of b12 def / PA !!
Also have stated many times how it's proved how emotionally strong we have to be to prove at times it isn't another label put on us ( fibromyalgia, CF ,clinical depression.,menopause , anxiety ect ) as may be fitting the symptom list ( computers again )
but the individual knowing something else going on .
Good if they say simply didn't know .
Will continue to test and learn.
It's those that give some continuity and observation and every test and listen need the 'awards ' and the ones to be trusted with our care.
An open mind 😌
The lack of continuity is not helped by poor records and box ticking .
The medics pressure of time constraints and I. t at times adding to admin .
Also clinicians doing all their own admin . Not at times their strengths
And so it goes on ...
Try and keep a A5 card .
Symptoms ( 5 worse)
Clinical response to b12 treatment.
Information for professionals available from PAS .
Of course all these things arnt only with our health but in life .
Never easy .
I hope you find your way through your present problems with help from a friend or partner ,medic always on your side .
Gaslighting again 🙈😔😔😔 what is wrong with these GPs! Do they not get taught anything 😔 I’m very sorry you have been treated this way.
Report your GP and change if you can.Good luck.
Ellamae2 Sharing 3 links which refute the placebo effect statement from your doctor. I will send each in a separate post. This 1st link I believe you need to be a member of PAS to access. pernicious-anaemia-society.....
Ellamae2 2nd link Many faces of cobalamin deficiency. Go to section labelled Possible Placebo Effects Unlikely.. link ncbi.nlm.nih.gov/pmc/articl...?
Ellamae2 3rd link. pernicious-anaemia-society....? do a find on the word placebo and much will come up. I would ask your doctor to elaborate on what he means by: b12 levels don’t drop until after 2 years in relation to b12d. Yours of course have dropped as you need injections. Our need for increased injections is NOT a placebo effect.
Ellamae2 Here is the link for current Best Practices from the BMJ regarding B12 Deficiency. I would share with your doctor. bmj.com/content/383/bmj-202...?
Hi,
Short reply as am struggling to type.
"How do people get their doctors to listen to them"
How to write letters to GP about B12 deficiency
b12info.com/writing-to-your...
I think letters are harder to ignore...they are supposed to be filed with your medical notes....useful to have a paper trail in case you need to make a formal complaint.
Always keep copies.
Keep up to date with UK guidelines
New NICE B12 deficiency guideline - published March 2024
I have reservations about this new guideline ...I feel there is too much emphasis on treating deficiency with oral tablets.
NICE CKS (Clinical Knowledge Summary) Anaemia - B12 and Folate deficiency
I think some of the guidance in this conflicts with the newer NICE guideline.
Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland.
Thread about Patient Safety, has links for those in UK having difficult health experiences with B12 deficiency
healthunlocked.com/pasoc/po...
Help for GPs
Might be worth directing your GP to these.
1) PAS website has a page for health professionals.
pernicious-anaemia-society....
GP could join PAS as an affiliate member, no charge.
2) Has GP heard about Club B12?
This is a group of researchers and doctors across the world looking into B12.
They have regular zoom meetings and have hosted a conference in UK.
3) Useful articles to show GP
i) B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
ii) Recent BMJ article by B. Wolffenbuttel
One of the few doctors (in my personal opinion) who understands B12 deficiency.
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
iii) He also wrote a article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
I'm not medically trained.
Just sounds like typical symptoms of not enough B12 to me. I hate doctors who condescendingly tell us our symptoms are all in our heads. I hope you find a way to get enough B12 soon. Daily sublingual B12 of at least 1000mcg might help. If not, you might have to self-inject like so many others who are undertreated.
It seems highly likely that, if we are able to retain all the B12 we require for the next two years, out injection frequency would reflect that. Yes, emergency B12 is stored in the liver, but those supplies have already been used up when you get tested and found to be deficient - or else inaccessible to you for some reason.
"Placebo effect" is quite easy to label someone's symptoms with - but only if the symptoms are not visible.
I once decided to demonstrate, to a new Oral Medicine consultant, what happens if I stop using nipple cream (100% lanolin) twice daily on my angular cheilitis. Sore, dry, red skin around mouth, particularly in corners, then starts splitting and bleeding. I wanted him to know that this condition is controlled, not cured, by treatment.
Sure enough, my symptoms returned within a couple of days. It looked awful. Result.
(I posted a photo on this forum, back in 2022 I think)
What happened next ? Three appointments in a row were cancelled, and then finally I saw my original Oral Medicine consultant - the one who was already well aware of what I looked like and that I wasn't cured !
>sigh<
Well, what I mean is that not all your symptoms will be conveniently visible to a GP or consultant for the 10 minutes that you get to see them.
This does not mean that they don't exist. It only means that a GP or consultant can't see them.
If the medical professionals are unaware of the many symptoms of B12 deficiency, it is because they haven't suffered from this themselves, have had poor training on the subject, and don't understand how this condition can affect our lives.
I am so disappointed that a GP has chosen not to believe that your symptoms return. Nerve damage cannot heal without adequate treatment. Every other day injections are recommended for those presenting with neurological symptoms. Some people, if left untreated/ undertreated for long enough, can find that nerve damage does not heal completely.
Placebo effect is when a sham or dummy treatment is provided but physical or mental health improves or appears to improve afterwards. Since you seem to be in the (unfortunately) common situation of getting a very real but inadequately frequent treatment, I can't see how this applies.
What he's probably trying to suggest (but he hasn't the intelligence to come up with the right words) is that your symptoms are psychosomatic, a typical gaslighting tactic used to make you doubt the reality of your symptoms. I am very familiar with this, having been on the receiving end as have many others here.
You could try asking him to grow a third brain cell, and failing that, you may need to consider self-treatment as many do.
Hi Ellamae2,
A few more thoughts....and apologies if I repeat anything...I'm overdue a B12 injection so brain is struggling.
Might be worth filming visible effects to show GP.
unusual movements/twitches in muscles/limbs/eyelids
When you have time, read up about "proprioception B12 deficiency"
Proprioception is awareness of where the body is in space.
If your balance is worse when it's dark, your eyes are closed or your view of surroundings is blocked then that is suggestive of proprioception problems.
If neurologist does not perform neuro tests where your eyes are closed then it's unlikely that proprioception sense has been fully tested.
Two tests that can help neurologist check proprioception are
1) Romberg test
2) Walking heel to toe with eyes closed
These tests should only be carried out by a doctor at medical centre due to risk of fall from loss of balance. Don't do them at home. Videos of these and other neuro tests on Youtube.
Have you seen a neurologist?
See Management section of "NICE CKS Anaemia - B12 and Folate deficiency" document for more info.
Has your GP got a full list of symptoms especially every neuro symptom?
Symptoms lists
pernicious-anaemia-society....
b12info.com/signs-and-sympt...
theb12society.com/signs-and...
Next list is from US website
b12awareness.org/cobalamin-...
Next list is from Dutch website
b12-institute.nl/en/symptom...
If GP remains unhelpful, might be worth showing them this PAS document.
It explains that B12 deficiency can cause spinal cord damage if treatment is delayed or inadequate.
Some details may be upsetting to read.
pernicious-anaemia-society....
I fought for years to get treatment but in the end had no option but to treat myself.
To much folate to bad effect??
Stopped Injections
Unsure I’m getting the right treatment for B12 deficiency 
So frustrated I could cry
Covid effect
