Hi guys,
So I've been having chronically worsening tingling and pins and needles in my hands and feet, and I'm looking to start up with a B12 complex again.
Can somebody tell me how much '2.5ug' is, in terms of B12? I had 6 loading injections about 18 months ago and took a supplement for a while but I'm a bit out of the loop, so to speak.
Thanks
Firstly , have you had no injections of B12 since the 6 loading doses of 18 months ago ? 2.5 mcg ( that’s the only way I can type the quantity you quote) is roughly the recommended daily amount of vitamin B12 intake . If you have Pernicious Anaemia you can only benefit from injections , not oral supplementation. Were you given a reason for your B12 deficiency ?
If you have Pernicious Anaemia , you will need B12 injections on a regular basis to keep the symptoms at bay . Also , a daily folic acid tablet of 400mcg daily ,as it works with B12 .
Hi, thanks. No, I haven't been diagnosed with PA but it is something that's been lingering around, along with a lot of other symptoms for over 2 years.
Problem is, I've been diagnosed with CFS/ME, so all other investigations have basically halted, so I'm having to resort to trial and error and investigating, as much as I'm able to, on my own.
A private doctor suggesting the injections, which I had, but then I had to have them privately, as my family doctor wouldn't agree to it, as my levels were considered 'normal' via NHS guidelines. Neither doctor was happy with what the other was saying but I went ahead anyway and got the injections done at my own cost. Only problem was, I couldn't afford to keep them up that way. I'm looking at some of the German pharmacies now for the injections.
Re: 2.5ug, I've just realised that that is basically mcg. That was pretty damned dumb of me.
It’s not that much. I bought 5000mcg tablets and am injecting 1x per week and taking two tablets a day to try and maintain feeling in my toes. The ones I bought were Phoenix high dose b12. 180 for £13.
I’ve been wondering why doctors prescribed tablets are such low dosage. I seem to be able to absorb some of the b12 as I can feel the nerves tingling when I take them.
Doctors prescribe 50 mcg tablets because the human body can only absorb about 13 mcg in one go. So about 99% of the 1000 mcg tablet goes straight through.
You might wonder why Big Vitima sell such high dose tablets. It's because a 1000 mcg tablet costs not much more to make than a 100 mcg tablet. The cost of 0.0009 grams of B12 isn't much at all compared to the cost of the other ingredients, manufacturing and advertising. And there will always be a market for the higher dose tablets as many people believe 'if some is good, more must be better'.
And, if it's got more active ingredient then they can charge more for their product. And profits is the sole aim of Big Vitima.
Oh right. Thanks for correcting me!
I had assumed that the high dose were better as I don’t get any nerve response with the lower dosage that is in multi vitamins. I get a nerve response with injections also.
Hello I’m brand new to this site. I have numbness both left and right feet and pins and needles lots of tingling my B12 they said is 170 in the middle as they class 150 low and 190 as normal can I ask is this how you were please it’s so scary
Thanks julie
Hi Julie, apart from the numbness, which I thankfully don't have, that sounds about right yes. I generally get the pins and needles/tingling when I'm over-exerting myself, hot or if something raises my temperature internally (i.e. anger, stress, etc.).
I haven't had my B12 tested for about 18 months, but I've been medicated myself as my doctors aren't convinced it could be playing a role in my illness.
Do you suffer with anything else along with the tingling?
Hi Dave sorry late reply. I am on Amitriptoline 20 mg nightly to help pain of sensation of pins and needles, it’s like a burning sensation it’s awful. I get that over my arms and legs. I feel extremely weak not tired in myself just weak. My toes are still numb this is the fifth week now and my B 12 reading is 176 which doctor has said isn’t that low. They’ve done MRI ruled out MS and done nerve conducting test which shows my nerves are damaged to both feet but have no answers and I am awaiting more blood tests to be done. I cannot stand my feet being like it or this weakness in my arms and legs it horrid. Now I’m done with my mains how are you? Julie
Im recently diagnosed with B12 deficiency. I was told 200 was the bottom of the acceptable range and with my figure of 207 and relevant symptoms and 2 weeks of pills having ne effect was given the 6 injections over 2 weeks. 10 weeks later the symptoms are returning so I have to tackle my GP. The symptoms are typically tingling in hands feet verging on numness, pains like shin-splints in arms and legs, burning of arm and leg muscles with minimum activity and lack of "go" Also this time got numbness in face, a feeling of tighness in head, including a feeling of pressure at back's of ears and eyse, all told my head feels like a crss between blocked sinuss and a hangover,, Anyone getting theose facial symptoms as thats new to me.
Go back to your doctor and demand a referral to a neurologist for your peripheral neuropathy (because it sounds as if that is what you have). There are over 80 possible causes and B12 deficiency is just one, so you need to see an expert.
Do you have any other symptoms of a B12 deficiency? Extreme fatigue is the most common.
Are you vegetarian of vegan? If so, B12 tablets would be worth a try.
While you're waiting to see the neurologist ask your doctor for a trial of B12 injections to prevent permanent nerve damage.
Read through this article, especially the summary points, to use as ammo in the argument with the doctor. onlinelibrary.wiley.com/doi...
Thanks - yeah, I assumed peripheral neuropathy too, I went and had a nerve conduction study done via Spire, but it was clear. I'm convinced there's still a problem there though, so once I'm able to actually see my GP face to face again, I'm going to push the issue again.
I do also have fatigue, yes, along with severe breathing issues, aches and weaknesses. It's all gradually worsened in the past 12 months. I'm not a veggie or vegan.
I will print that out and take it with me though. It's been 6 months of not being able to get anything done, so I think it's time to start pushing again.
You should definitely pursue the injections. My tingling led to numbness and then a leg that would not move. Unable to walk and with a brain that was also deteriorating, I had to take early retirement. Every injection gave me 10 days relief but the doctors said it was not possible to give them any more frequently. I have never had pernicious anaemia just neurological damage from a consistently low Vit b12 level. Now I am self administering, giving myself an injection every other day until there is no improvement in my symptoms just as NICE guidelines state. I have given myself 12 injections so far and the improvements are astonishing but I still have a way to go. Rejuvenating numb fingers and toes is a painful process. Get yourself back onto the injections before the tingling gets even worse.
I have started them up again, after having a minor surgery 2 months ago I took a break but back on them now. 1-2 every week, but I'm looking to increase the dose over time.
I'm glad that they're having such a huge benefit for you though. It's ridiculous how reluctant they are in this country to prescribe more than one every few months. So stupid.
Where do you obtain supply for self injecting?
Is it jyst the injections you take ? Or anything else along side
My level was 124 in June this year had loading
At Gp then one a month
They say I do not have pa tests where neg for that
Gp says my level b12 is high now
I’m 18 days off b12 as she said stop as my symtoms she says could be because to high b12 now
I’m confused
I’m burning upper arms hissing ears
I’m scared to death as I’m feeling like is this still b12 def ?
Do you SI ? In tummy area or where
My Gp said that my b12 was high and could cause nausea weight loss etc anxiety
And weird sensations on my body ?
Mostly ear hiss and upper arm tingles burning ?
I can’t take folic acid supplements as upsets my tummy
I’m at my wits end
I do nit know what to do
Whether I’m low b12
Or to high niw
She test the test is accurate and I gave niw enoygh
I’m terrified
When my Vir B12 levels were tested after I had started having injections, not surprisingly, the serum levels were high. After while, I found a research paper advising haematologists not to go on the Vit B12 serum levels but to look at the patient.
bmj.com/content/349/bmj.g52...
Because I was getting relief from the injections I was determined to get the injections but having to take early retirement meant that my pension is low so I could not really afford them. Then I read on the Pernicious anaemia site about a company in Germany that produced it without the need for prescription and bought 100 doses for under £60 the equivalent of two injections privately.
healthunlocked.com/pasoc/po...
A friend who is a nurse told me to look up self-administering intramuscular injections on the internet, which I did. She supervised my first self injection and now I am confident in the procedure.
There are no known side effects to high dose hydroxocobalamin as you excrete what you don't use and it does not build up like fat soluble vitamins. my GP is happy for me to be paying for extra injections but cannot give me any more on the NHS.
The list of conditions that have been relieved are many and various: no more pulsative tinitus, hair loss reduced, muscle tone in my face improved- it was so bad that I could't open my right eye wide enough to use binoculars, fatigue lessened- I still tire easily but that is because I can do more. One condition that has been corrected is myoclonus a form of epilepsy that I had suffered from for 45 years yet the neurologist wasn't impressed! Every day I notice something more that is an improvement. I am having physiotherapy on my right leg after nearly three years of not using it properly. The physiotherapist is intrigued by the effects of the injections.
As I said, the reversal of neurological damage is a painful process and I have had many sleepless nights with nerve ending tingling and painful.
Have confidence in self-administering and I am sure you will notice the difference.
Do you self inject how often I can’t take folic acid as it upsets my tummy
Absirbtion etc
Some people say you need this along side
I’m scared as I can’t take it
Cause my belly x
How Long in are you ? What was your level sat at ? Mine was 124 high niw of course
MU. Thing is ear ringing arms burning it’s vile Gp said to stop I did niw ive worsened a lot
I feel like death literally xx
I think that I experience ever changing tingles and altered sensations as my nerves regenerate. It gives me hope that the damage done is not irreparable.
For two and a half years I had one injection every four weeks. That allowed me to walk for 10 days out of 28 but also gave me painful tingling in my hands and feet as everything came back to life. When I pleaded for more injections, one neurologist told me that he considered it to be placebo effect and that I should be thankful that I got the respite.
Earlier this year more symptoms became apparrent; I began to stammer, I had complete memory loss of things that I had done and not just what had been said to me, then I began to have trouble swallowing towards the end of meals. I was very fortunate to find a Vit B12 technician who gave me interim injections but I could not really afford them. Then in the last lockdown I panicked that I would not be allowed to meet up with the technician and luckily found out about how to buy the vials for self-injecting.
I noticed improvement in myself with injections at one per week but noyhing compared with injecting every other day. I have had 13 doses so far but ther is still a long way to go.
I have read that folic acid supplement can mask the symptoms of Vit B12 deficiency so I do take a supplement but will stop when the bottle is empty.
So you take folic acid ? You inject every other day niw ? For how lint ? Sorry questions
I got to day 16 and virtually on floor
I need to inject more frequent as one a month at Gp is not enough I bought my own now but do get scared to do this b12
I’ve had bad 10 days of ear hissing and swallow issues hiw ling you injecting ?
Ate you saying you take folic acid as well as inject if so what daily amount
I had another tell me that yes it does mask it levels need to be a good level to start off with and also another said no folic as it can effect the absirbtion of the b12 then another ssid you need both bit confusing I might take just a little at the weekend to keep my folate up but prefer food source but would have to eat a lot to do this
Are you scared of doing the injecting or of the effects of the Vit B12?Doing the injections is not a problem. Look up on the internet for the best sites and videos of people injecting.
Vitamin B12 itself is a very necessary amino acid that we cannot synthesise for ourselves. If the absorption of this vitamin is blocked them the consequences are massive. Many people, doctors included, seem to think that pernicious anaemia is the main symptom to check for. It is definitely not.
I’m not sure if pa all tests where neg Gp said your ok now and stopped b12 I’m now in a worse position today
I started SI
I’m nit scared but it does frighten me a little people say even Gp that to high b12 is harmful I’m scared of that
My vile symtoms are bad SI bad
Think I’m like death
I’m weight loss no appetite ear hissing head ear vibrations weakness upper arm burning depression constipation leg weakness gut issues tingeling face arms anxiety my Gp Says this is such a if high b12 ?
Erm it’s also signs of low b12 where you told me to stop I’m terrified today as I dint think I’ll make this
Injected this morning the ear hiss noise has increased dramatically I know people say it worsens but my god this is bad right now
I’m trying to distract but it’s so hard with the rumbling and hiss I do nit know how I’ll sleep tonight with this if it’s like this now god only knows please keep me safe
I’m terrified truly
This has gradually crept up on me again
I’m tearfull crying alone and scared
I’m scared of this hissing vibrations in head
And the burning arms
I know people say worse before better
Niw I do nit know when to inject again
As it is off putting when you inject and then feel worse like this
I’m terrified of the next b12 inject
Please any thoughts
I have just Googled tinnitus. It is something that I didn't get. This is the first thing that came up:Can b12 supplements cause tinnitus?
Minerals and vitamins – Scientists believe tinnitus may be linked to a deficiency in zinc and vitamin B12.11 Jul 2019
Maybe that would be worth following up.
Then I found this page on ways to deal with tinnitus.
healthyhearing.com/report/5....
So it’s saying b12 def is a cause of tinnitus and not the supplement that’s causes it ? It’s linked to a b12 def then ?
So if you treat yourself with b12 it may help that’s how I’m seeing this post ? Is that what your saying as the post says linked to b12 and zinc if your def in either ?
Wow, that's highly impressive and puts further shame on the health services that simply refuse to prescribe or offer a more comprehensive program of B12 injections.
I just gave myself another this morning - my third in 10 days. I have heart arrythmias and whenever I inject they become more aggressive so I'm still nervous about doing it any more often as with that and the chronic fatigue, I'm running on little sleep as it is. But hopefully I can continue to inject at least once a week for the time being.
I was taking a high-dose iron supplement but stopped after 2 days as it was really not agreeing with me at all. Looking at folic acid supplements now instead.
Im new to this site and B12 deficienc. Its now 10 weeks since my GP 6 injections over 2 weeks and ready for the next injection. But I'm noticing symptoms coming back, tingling in fingers and toes, shin-splint type jabs of pain in are and leg bones, twitching of muscles, and a new symtom, my face feels numb, the backs of my eyes and ears ache on the inside is if under pressure from outside, a amalgamation of blocked sinus (its not that though) and a mild hangover (it not that either). Interested to elarn you too had facial symptoms, are thy similar to what I describe? Are yuo sure that high levels of B12 do not create problems?
That's just prompted another memory of symptoms that I am recovering from. When I was very fatigued, I would become breathless and have heart palpitations. I was exhausted just walking up the stairs.I wonder why the doctors didn't show me any more sympathy. Perhaps they couldn't accept that one person could have so many varied symptoms.
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