i felt a change in myself in December & I was feeling really low, sleeping for 15 hours a day almost every day and still feeling totally exhausted afterword's. i had been unwell over Christmas so put it down to that. however i carried on feeling this way up until Feb with my symptoms getting worse i couldn't concentrate on anything i felt as though i was in a daydream all the time and couldn't shake myself out of it. the only way i can describe my sight was like when you look at a light for too long and see blotches everywhere only this was all day everyday.
I couldn't focus on anything. id then get really angry or really emotional for no reason all the time. i decided enough was enough and called my GP for an appointment. it was mid march before i got to see someone!! by this point i had no energy to do anything and was completely miserable. i explained my symptoms to the doctor half expecting him to tell me it was all in my head and i was just being lazy (as everyone else had suggested!! even more frustrating!) he tested me for diabetes etc.
when my blood results came back i was told i was B12 deficient i cant remember exactly what my levels were i do remember him saying it was below 100 though.
I was given 6 starter injections over a period of two weeks then moving on to one every 3 months. after my third jag i felt a difference i had more energy i just felt a lot better. however its been 8 weeks since my last injection and im not due my next for another 4 weeks & id say over the last 3 weeks I've felt myself decline again. the brain fog is back worse than ever and im sleeping a lot more, i feel like i have no energy to get through the day. i decided to call my GP practice and ask is this normal.... i got to speak to a nurse who basically said its just what i have to get used to now i'll never feel totally energetic. i never expected to be bouncing around full of energy but i did hope that i could make it through a day without wanting to cry with exhaustion. her advice was exercise more. im completely at a loss i feel so down im 23 years old and spend my weekend avoiding plans with my friends so i can sleep the whole time what a life eh?
its been reassuring to see im not the only one feeling this way though. i found it interesting that some of you get your injections a lot closer together. i did ask the nurse this and was told there would be no point having my injection sooner as i would feel no difference. did anyone go from having injections 3 months apart to 2 or 1 and feel a change?
i also looked at B12 tablets from Holland and Barrett has anyone tried them? i feel like i have no other help so may as well give them a go.....
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i did ask the nurse this and was told there would be no point having my injection sooner as i would feel no difference
Don't listen to the monkey, speak to the organ grinder. Make an appointment with your GP, explain that the B12 fixed your symptoms but that they've come back already. Explain that you have problems with your mood and brain fog and that the BNF recommend injections every 8 weeks for people with such neurological symptoms. (Your GP will have a copy of the BNF in his/her draw or on the desk).
I was originally told I could have mine 8 weeks apart. I kept a diary of my symptoms and treatment (most of it self-injecting) and persuaded him that I needed a prescription for once a fortnight. My graph of fatigue vs treatment - frankhollis.com/temp/Fatigu... - seemed to help a lot.
thanks for replying. I did think it was a little odd she said that especially after reading people on here saying they have them more often. i can see the difference its made for you! i have an appointment in a few weeks with the GP so hopefully i can get some sort of better arrangement.
Have you not been tested for Pernicious Anaemia? If not ,why not? It sounds to me as though you have it, Unfortunately the test isn't 100% accurate. You can have P.A and the antibodies to the INTRINSIC FACTOR do not show up. But you should have that test. I was in the same position as you , but my doctor would not allow me more injections than once every 3 months.though I had P.A. So I had to turn to self -injection to keep myself well. This made all the difference in the world. I have settled on once a week,and never get the symptoms returning now. I did try sub-lingual Methylcobalamin lozenges,patches and B12 spray ,before I self-injected, to no avail. If you have to make that decision , come back here to find out how to go about it! Best. wishes . YOU DO NOT NEED TO SUFFER!
pernicious anaemia has never been mentioned strangely enough. i didn't know anything about it until after i had, had my injections and was talking to someone at work who got the same injections but had pernicious anaemia.. she also found it odd that they wouldn't mention that. i have an appointment with my GP in a few weeks so will be sure to bring it up then!
i had no idea you could self inject until i came across this forum! i'll have a read into it. im pretty new to all this its just reassuring to know im not the only one and there is help out there
oh dear - poor you -no, its not right that you feel this way. look at the post on this site it will help you a lot - but I think you should ask for an emergency appointment with your gp - even though you might have a fight on your hands. let us know what happens.
i know the whole thing has been a nightmare. any time i phone up to make an appointment or even just speak to my doctor for some advice its a fight to get past the receptionist. i do have an appointment for a few weeks time will let you know the outcome
I've tried a few times and get asked whats wrong and they decide from there if I can have an emergency appt. never happens as when I tell them im tired etc it doesn't sound like much of an emergency. most of the time I get put on hold while the receptionist speaks to the doctor and decides from there. have an appointment booked for a few weeks time anyways so i'll eventually get help.... hopefully anyways
im also curious... after having the loading doses did you have a blood test to check if there was any improvement? i read elsewhere that a blood test is sometimes done after the loading doses or 8 weeks after the loading doses... I've never had another blood test done since my first one where they discovered i was B12 deficient.....
Once you have had loading doses, there is no point in blood test, as the values will be high. Also supplementing with tablets etc, will register high. This doesn't tell you if the B12 is getting through to your cells! Your symptoms do.!!! THIS IS THE MOST IMPORTANT EVIDENCE! . Be prepared for a fight. Trouble is when the symptoms are bad, one doesn't have the energy for a fight. Don't despair please. You have friends here ,many of whom have terrible tales to tell about doctors ignorance of B12 def and P.A.
im so glad i found this site. i call my gp all the time and they treat me as if im mad!! i actually started to believe it for a while. ive had such a hassle with them already and ive only just begun treatment! before i demanded blood tests to be done they tried to fob it off as stress/anxiety then asked where i worked when i said an office they said i could just be tired from sitting at a desk all day. i knew this was rubbish theres no way sitting at a desk all day would cause me to feel as bad as i did.
its been very interesting reading everyones stories. i wonder why they seem so against treating it
The exact same happened to me when i was 22 i totally lost it at my best friend but she was controlling and manipulating but i over reacted big time (i used to be a calm guy and have everything under control so i was scared as this came out of nowhere) i then went through what felt like a depressive stage, i broke up with my girlfriend and cut all ties with all my other friends as i felt isolating myself away was the best idea, a year has passed since then and i now feel lost, i work part time as i feel this is all i can manage and don't go out (i used to be out every weekend drinking with my friends) i spend all day inside and on good days i go the gym but my symptoms stop me from enjoying my life, I'm trying to see if i can get injections to ease the neurological problems but i feel like I'm going to have a battle on my hands, i just want to be back to my old self so i can go back to working full time and live my life as it should be, I'm not giving up hope as i have heard good recovery stories and i intend on getting better and staying that way
i know exactly how you feel! i got so bad that even people asking me simple questions about my day would make me feel so angry inside it was so bizzare!
i would be out every weekend then all of a sudden i felt like you said very depressed, didn't want to be around anyone. i never go out anymore. i actually look forward to a Friday just so i can spend my weekend sleeping because im totally exhausted all week
it makes it worse when the people around you don't seem to understand and say things like go out and do something. im like if only it were that easy! don't you think i want to be out enjoying life again? i physically cant get up some days.
ill force myself out to the shops at the weekend and even then i feel like im dragging myself desperate to get home to sleep its ridiculous!
oh trust me it will be a fight! but persevere i insisted on blood tests it got so bad i actually had to break down in front of the doctor before he could see how desperate i was.
I've been feeling down for the last few weeks but this site and everyones stories has given me hope. i know i don't have to put up with it. i hope you get sorted soon!
Last year when it all started i went to the doctors she did every blood test except b12/folate and they all came back as normal so she diagnosed me with depression! And i knew it wasn't that! So months passed and i kept going to the doctors complaining of b12 deficeincy symptoms (not knowing that they were at the time) tinnitus, sore calf muscles when walking, dizziness, psychosis, bad memory recollection and they brushed it all off until i seen a new doctor and straight away she did a blood test checking b12, thyroid and vitamin D and low and behold it came back as b12 deficiency (my test shown 178 in b12) she's put me on tablets which I've been on for 6 weeks now but i dont feel like they're working, I've gone back to feeling quite calm but there's something inside me which makes me feel like i can snap when i get into a stressful situation, you said something about holland and barret, ive bought a 1000mcg b12 tablet from there and i take it in the evening when i feel my symptoms getting worse, they help but it's a slow release, hope you get the answers you need in getting better
I've been getting injections but its every 3 months. my next one isn't due for another month to was thinking if i tried the tablets it would maybe give me a little boost. not sure though but getting no help from the docs at this point so anything is worth a shot i guess!
Do you eat b12 containing foods like fish and meat? And there's no harm in taking the tablets, i do believe you can't overdose on b12 as it's water soluble so feel free to take a nice high oral tablet to keep you going
yeah I started eating more foods containing B12 when I started my injections as the doctor had mentioned that. then when I called up for advice and got the nurse she told me eating foots high in B12 would make no difference as the the reason I get the b12 injections is because my body cant absorb the b12 from those foods. its all rather confusing.
Ahh i see, you might want to look at a b12 spray then as that should go straight to the bloodstream bypassing your stomach if you can't absorb enough of it, someone told me on here you can get one from any leading pharmacists so i would imagine boots might have some
Hi your b12 tablets may not be working because your stomach isn't absorbing it properly. You are better taking the sublingual lozenges or spray as they bypass the stomach, going straight into the blood stream. Did you get your folate tested too? This needs to be optimal to get the best from the b12 supplements.
What were your thyroid and vitamin d results? Most doctors don't understand them either. If you go onto the thyroid community and post the thyroid results there they will let you know id they are ok.
Be careful with supplements from Holland and Barrett as they use bulking agents. Some people can be allergic to those. I first supplemented with the sublingual lozenges by Jarrow 5000mg from Amazon. There is a good b12 boost sptay too. If you click on the Amazon link on thyroiduk.co.uk a small donation goes to them.
It may be you end up self medicating like a lot of us do. Good luck.
Be careful with supplements from Holland and Barrett as they use bulking agents.
Every company will use some form of bulking agent, especially for B12. Otherwise your 5000 ug lozenge would be the size of a grain of salt. But it contains xylitol, cellulose, stearic acid, citric acid and magnesium stearate - oh, and B12.
This is my problem i was tested for a lot of things and was only given my result for b12 when i asked about my thyroid etc i was told no cause for concern and that was it.
I think at my next appt im going to have a long talk with him and just ask what theyve tested so far and what my exact results were ill also ask about self injecting i never knew about that until i came on here
Ask for copies of all your blood test results. You are entitled to them under legislation. They may make a small charge for them but you can see them for free and make notes. Either way you have to make a written request for access to medical records.
You must insist on being checked for Pernicious anemia as if you have that you will not be able to absorb any B12 through your tummy you must have injections!!
I was the same as you. My GP agreed to monthly injections but this wasn't enough, my symptoms returned. I now self inject (my nurse friend and my Mum) do it every other day which seems to give me a lot more energy.
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