I may have to wait a week or so before my injections start and at the moment they're only going to be once every three months. No loading schedule has been mentioned although i've not had a chance to talk to the GP yet so will try and discuss this. my understanding is that even without neurological symptoms I need a few weeks of more regular injections before settling at three monthly.
However, whilst my symptoms are relatively stable right now I am getting a bit agitated even about waiting a further 1-2 weeks. Would it mess everything up if I went and got a shot from the fitness centre (they've got a beauty parlour set up where you can get them) in the meantime? My theory being that anything is better than nothing.
I don't know why type of shots they use - I think I've been recommended hydroxy but God knows what they dish out at the fitness centre. Does it matter?
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Onefish
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I am in a similar state of impatience! Having been diagnosed with a B12 deficiency (100 pg/mL, so no doubt about it) I had 6 loading doses in 3 weeks. I was told it should have been 6 in 2 weeks but I could not get that many appointments at my local surgery and am too exhausted to get anywhere else.
When I went for the loading doses they also took more blood samples for additional tests (was not told what tests!) so you may want to delay possibly confusing the picture by getting fitness centre B12 in case it complicates things. (I don't know if it actually would or not.)
I was told a doctor would be in touch to discuss long term treatment but none has been so far. I am expecting to hear that I will get one every three months as that seems to be the standard treatment unless you can convince a doctor that you need it more frequently.
The loading doses have, to my disappointment, had no effect on my fatigue and so I am considering whether to start testing out options for additional self-treatment - sub-lingual, spray or high-dose oral supplements to begin with as self-injection sounds like a faff in terms of getting the stuff, learning how to use it, dealing with disposal of sharps etc.
I want to do any self-treatment in a systematic way so that I can see exactly what works and what doesn't. I feel like I should probably give the NHS treatment a chance before I start experimenting, if only so that I can tell them that their treatment has not improved my symptoms.
I was very ill during loading doses and felt totally overwhelmed with the pain . Migraines, hrart palpitations ,tinnitus and nervous system rebooting.I was mostly bedbound.
Vertigo and unable to walk straight.
I wonder if spread out a bit more te pain would've been less??
I then declined as supposedly had to wait 3 months .
I lasted 5 weeks using high dose sublingual and tablets
then Gp put me on every other day again after a quiet sit in at the surgery.
I was very poorly but got a huge reaction from b12 injections .
At one stage Gp wanted them.stopped as they concerned.
Stay with your GP. A Fitness Centre will give you most anything for money. Your GP know what they are doing and if subsequent GP Blood Tests show that you are still low after treatment then they are authorised to give extra B12 doses until your level reaches an acceptable level.
Think of to this way: You go to a Fitness Centre, dose yourself to a high level and the GP Blood Test indicate that your B12 levels are satisfactory. Result? No more Gp (NHS) treatment .... your B12 level has gone up ... Stay with the GP.
Spot on! The absurdity of being able to get a B12 injection from a fitness centre [providing you're not deficient and require a prescription] is absolutely ridiculous. If you need it, you need a script? The lunatics took over the asylum a long time ago!
B12 injections are required for life not until serum levels are raised. This is how deficiency should be treated. See NICE or any other protocols. The only exception is a dietary deficiency which is unusual.
Thanks everyone, really glad I asked. I'll wait for now then - I'm seeing the doc on thursday to discuss what's next. I know that it'll probably be a shot every three months at the very least as that's the advice she's had from the specialist. I'll raise the issue of loading doses with her - if it's standard NICE practice then presumably she'll be suggesting it herself. Presumably...
On page 2 there is a table of misconceptions that are important to relay.
B12 is responsible for cell generation. Our cells (brain cells and others) regenerate ever 120 days.
W/o b12 they don't regenerate and this won't necessarily show up in blood tests
This point however is that without b12 injections the neurological damage can become permanent.
frequent injections are needed until the symptoms improve.
Don't tell them the shots aren't so effective. Tell them they are really helping. Because it's a chance for you to heal. It may be helping more than you know but that you are so low on b12 and so sick you don't notice a huge difference. The recovery is very gradual. It's not an overnight, one or two shot deal. It took me two years of daily injections to get back on my feet.
B12 tests can't be done once injections are started as the injections go to the blood stream thus the test is now skewed and will always show high but that is showing what you have injected, not what your cells have absorbed.
You have to stop injections for 2-3 months before any blood tests should be taken for b12, this progress must be measured by symptoms. Injections should be givin frequently until symptoms resolve.
Take control of your recovery. Otherwise you will suffer so much longer than necessary.
It takes 4 years to deplete the stores, this it takes time to heal.
Pressure them. Give them this document. Tell them it's affecting your job and your every day job and that you just want to get back on your feet.
If they have done your initial assessment blood tests and aren't going to do more, they won't know. After loading doses they will then take another blood test to check that you have responded to treatment. If you take extra in this period, it could affect things. I did and everything got set back to a 3 month gap. I now self inject, as the waiting set me back to square 1 and they didn't really assess my neurology properly. I'm finding my memory is getting much better as I recover, for example.
The main thing is don't fess up to extra doses! Which is ridiculous that we are put in this situation .
Ok, that's good to know. So if they agree to go ahead with loading doses, I do nothing, wait for them to do the tests once the loading dose is over, then the ball is in my court. To be honest, if they do start doing an initial load I would rely on that and nothing else. It's just the waiting for it to start which is causing me concern. I'll just have to see what she says at my appt this week and hope they follow the treatment flowchart.
When you speak to the GP remind them of the NICE guidelines . You can find these online, it's also worth checking if there are any differences in the protocol in your Trust area.If you haven't had one yet you need an Intrinsic Factor blood test before the injections start .
You are then meant to have the loading doses over two weeks as soon as possible .
Then receive the three monthly doses
Or, receive two monthly injections if you have Neurological symptoms , or have a neurological condition which can be made worse by low B12.
You are not meant to have B12 retested once the injections begin because they will give artificially high results , NICE rules.
Now this is an area that many people don't pick up on in the rules.
If you continue to get neurological or cardiac symptoms on the two monthly protocol you can get B 12 or Folate on the NHS at shorter periods than every eight weeks as long as this has been recommended to your GP by a Consultant.
I chose to go down the NHS pathway rather than beginning to Self Inject. I won't say it didn't take a while and I obviously had periods of time when my symptoms got much worse again but I have now been approved for 6 weekly B 12 injections and three monthly Folate infusions by going along this route which works well for me. I also take sublingual supplements every day in between injections.
I have other neurological and cardiac conditions, and I was able to show in my symptom diaries for both Migraine and Cluster Headaches and my Arrhythmia activity that the events increased consistently 6 weeks after my B 12 injections , giving me two bad flare weeks per cycle. The Neurologist and Cardiologist sent requests to my GP to increase my injections to every 6 weeks with the option to four weekly if required.
This caused no issues with the GP whom had also accepted they needed to do 8 week injections and no more testing when I'd showed them the NICE rules before the Specialists were involved . I reminded them if the rules at the first three month injection appointment I had after my loading doses, my two monthly ones were approved from then, the consultant approved six week injections after seeing my Neurologist five months after that.
Because I hadn't self injected the symptoms were there to see so they could not object to increasing my B12 injections.
As I say it took time though so I can understand that many people can not manage to deal with the delays of getting things sorted out within the system and decide to self inject instead.
Although Dietary B12 and Folate Deficiencies may be less common , Medication Induced B12 or Folate Deficiency is actually quite common but often overlooked or not properly diagnosed.
Many different necessary medications for a huge variety of different chronic conditions affect stomach ph and nutrient absorption from food sources including NSAIDS, Anti Depressants and Anticonvulsants, Nerve relaxants, Steroids, Statins , Antihistamines , PPIs and Antacids to name just a few.
So it's really important for people with all different sorts of chronic health issues that require medications to have their B12 , Folates , Ferritin and Vitamin D tested regularly, and many are likely to require some form of supplemental treatment with a lifetime health condition.
The affect of natural ageing on stomach acid levels and the digestion system can also be a cause.
I tested negative for PA, but Seronegative PA is not unusual.
My B12 anaemia and Folate Deficiencies are linked to another condition which they eventually diagnosed , I have Pancreatic Enzyme Insufficiency, so I do not digest , metabolise or absorb nutrients from foods well even now that I have enzyme therapy. The conditions were also made worse by the effect some of my other medications for other health problems have on my stomach acid.
It also means that any other oral supplements I require need to be in sublingual and their most active form.
Don't forget to take a Folate supplement if you are having B12 injections. You may become Folate Deficienct or borderline whilst on B12 but this can be masked in your blood results by the improving effect that B 12 injection has on blood cell structure.
Folate Deficiency can cause similarly bad symptoms to B12 Deficiency, so low Folates can affect how well you improve on your B12 injection Protocol.
My symptoms definitely improved once Folate supplementation was included into my regime.
Hope you get the help you deserve , take care , Bee
Thank you, Bee. My folate is low normal (6.5) so I'm keeping an eye on this, and my D is 35 so am taking a daily 2000ui supplement. My ferritin is a little high and the haematologist has done a liver scan, enhanced liver blood test and is checking for haemochromotis to be on the safe side. My scan was ok and to be honest, the ferritin level isn't so high I'm freaking out but no harm having the tests anyway.
I've had two intrinsic factor tests which were both negative but I understand this is often the case. Because I tested positive for parietal cell antibodies, and my red blood cells were slightly out of normal range, the haemotologist decided it was enough evidence to justify jabs even without the IFA showing positive.
I went through my NHS app and looked over all the blood tests I've had over the years and my red blood cells have shown some kind of abnormal reading for well over two years. The doc has always said "nothing to worry about". Well, that went well didn't it....
Yes , I know exactly what you mean. My abnormal blood cell results and B 12 levels were overlooked or dismissed as " blips" by Consultants doing my checks for other illnesses for about 15 years. No repeat testing was done and I didn't know I could request them at the time.Part of their nonchalance seemed to be based on prejudicial assumptions that I was probably dehydrated or not eating properly because I was always severely underweight. Despite the fact that I ate like a healthy horse , eye brows were always raised in scepticism when they compared my size to my food diaries.
Nobody considered that I was underweight because I had digestive problems rather than assuming I had the problems because I was underweight, because the only things they bother to test for are the most common options like Coeliac, IBD and Crohn's.
It was only when I got more proactive about getting answers for my ongoing problems , started my own research, and pushed for better and more regular testing that the professionals started to take notice.
I had probably been suffering with the effects of B 12 and Folate Deficiencies from malabsorption, and the Recurring Vitamin D Deficiency and Anaemia they were causing for two decades before they finally began to affect my Neurological and Cardiac problems severely.
Because of family history and missed diagnosis on my mother I finally requested for them to do genetic and enzyme testing for pancreatic issues ( I had early removal of my gall bladder but still suffered from regular bouts of pancreatitis like my mother had done) as I'd finally received the chance for genetic testing to get my Ehlers Danlos Syndrome classification ( again after much pushing within the system).
They found mutations for autoimmune pancreatitis and likelihood of pancreatic enzyme insufficiency which correlated with my enzyme and general vitamin low blood tests which I could remind them of by requesting my records. As well as confirming my Familial Cholesteroleimia.
I haven't had a test done in the last six years that I haven't checked myself so that I can question my care and get the right help from now on.
Just wish I'd known what I know now 30 years ago when many of my health problems began.
The upside is that my battles for diagnosis and care may have taken most of my life but my girl's aren't having to go through what I did and are already being diagnosed and treated when symptoms occur, So at least I feel like I've achieved my main goal to prevent them going through the years of suffering and dismissal I had to endure.
Take care and let us know how things go with you , Bee
it’s extremely frustrating as it’s such an easy thing to treat and would save so many repeated trips to the GP when they’re already struggling to make space for appointments.
Until I found this forum I didn’t even realize that low vitD was linked to b12 deficiency. I’ve been treated for the former several times with prescription grade supplements. With that plus my low b12 reading and the red blood cell results you’d think they’d twig.
I’m so glad you found explanations and such a relief that your daughters will be forearmed.
thank you so much for all the info, it’s really helped.
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