Just finished my 6 loading doses of hydroxocobalamin injections and I can't say I feel much different. I think after the 4th/5th I was feeling slightly better, getting more done during the day. But I had my 6th on Friday and feel just as tired as usual.
After an hour after each injection I've felt absolutely exhausted and slept from between 2-4 hours in the afternoon then slept normally again at night.
The day after no. 4 and no.5 I got loads done and thought they may have been making me feel crap at first then taking 24hours to kick in.
But after no. 6 on Friday I had a 2 hour nap till about 9pm, then slept from 1am-11:30 (wouldn't normally go sleep that late, could have gone earlier but oh wanted to watch a film when he got in from working late.) 2 hour afternoon nap then slept last night 11-10:30 and woke up still feeling quite tired and dazed.
Does anyone else feel awful when you first have the injection?
I feel like I'm going back to when I was at my worst in terms of sleeping and fatigue my tremors the same, still looks like things are vibrating when I look at vertical lines (e.g. radiators, edges of door frames) still getting mild pins and needles in finger tips but don't seem to be sighing as much.
I've had the tremor as long as I can remember and pins and needles could just be posture so maybe not related anyway.
Am I just not giving them long enough to work or could it be something else? My b12 was 238 (140-250 insufficient) so not desperately low anyway x
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Salphy
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Yup. After my first ever injection I had the headache from hell, felt sick and got really upset because it felt as though the very thing that was keeping me alive was making me feel worse than ever! The day after, I felt like I'd been kicked by a horse and was exhausted! It took about 48 hours to feel back to where I was before the jab.
Due to my G.P's indifference, I started to SI. I took a full dose, and bam, back came the headache and nausea. So, I started giving myself small but increasing doses every couple of days, and I can now tolerate a full dose with only a minor headache and grottiness the next day. I've taken to injecting before bed, so that if I do get a headache, then I sleep through it.
I find that I don't feel any different, but if I miss a jab, I feel awful, so I think you just get used to the slow improvement, and it's not until you slip back that you actually realise how much better that you do feel, if that makes sense.
Yes that makes sense thank you. And reassuring to know it's not just me I got headaches with a couple of then too, others I just felt drowsy and exhausted. But then some I could hardly feel and some hurt like hell. I think I've read too many stories of people feeling better driving back from the surgery after having it I was wishful thinking.
My next one now won't be for 3 months. I'm expecting I'll either be used to it by then or feel worse than ever cause I haven't been having them regularly anymore. We'll see.
Hi Salphy do you know what your Folate level is as this is essential to process the B12 you are having injected.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 gets to work repairing the damage done to your nervous system.
Yes I'm in the UK. Thank you, do you know how long it can take? I do have thyroid antibodies too but my levels are borderline so she doesn't want to treat yet. Could also be that making me feel crap still. Thanks x
I lot of people feel really ill with borderline thyroid results and as you have antibodies treatment for your thyroid would be given by a lot of doctors. I suggest you post your symptoms and blood results on thyroid uk health unlocked forum.It may well be why you are feeling so ill.
Thanks Mandy. The post was a while ago and luckily since then I've started and got established on thyroxine as well as my b12, folic acid and vitamin D. I'm feeling loads better in myself but I've been diagnosed with PCOS so some symptoms I'll just have to accept.
However the injection does still wipe me out on the day I have it. I get a headache after then sleep all afternoon but then feel better the next day and it's lasting for about 8 weeks before I start to feel tired again. Probably doesn't help how worked up I get over needles.
Anyway, I hope you have a lovely Christmas and new year
Thankyou Salphy. I dont beleive there is any such thing a PCOS. There are a few illnessess that have cropped up since doctors started relying on blood tests to treat thyroid symptoms and PCOS is one of them. All of the symptoms of PCOS are also thyroid related symptoms and I think there is a study going on somewhere following the discovery that the ovary systs are known to disappear with good thyroid treatment.
Oh fingers crossed. But my levels are optimal now (now just within range) but I still have irregular periods, acne, overweight (though have lost 10kg) and my levels were optimal when I had the ultrasound which showed enlarged ovaries with follicles. Maybe one day they'll figure it all out x
salphy. Just within range does not sound optimal to me for any of the thyroid bloods but especailly TSH. The Uk has one of the widest ranges of normality for TSH in the world. In American the starting point for treatment and diagnoses would be a TSH of 3. If your treatment is based on TSH and not on relief of symptoms then most people feel best with a TSH of 1 or lower and the T4 needs to be at the top of the range. One of the previous heads of the Bristish thyroid association Dr Toft wrote a book and article recommending this. I think it would help you to post your blood results on the thyroid Uk forum for comment. I suspect you are being under treated.
Sorry that meant to say not just within range. It's been 6 months since my last test now so going to get another one soon. Had a lovely Christmas thank you. Off to a log cabin in Scotland with the dogs tomorrow and can't bloody wait
Wonder if you can maybe help me. I’ve been having loading doses but I’m feeling extremely exhausted and groggy with headaches the next day after the loading injections.
My folate was 11.9 and I am on two weekly injections at the moment, last two next week. I’m taking 1600mcg folic acid as per the guidelines and I only started this yesterday but have had injections prior to this folic acid tablet.
Is there anything else I can do to stop myself feeling so ill the next day? I’m off to get coconut water today also to help incase Potassium dipped but sure it is fine.
If I remember rightly you have only been having "loading doses" for a week or two which puzzled me somewhat as to how your question "popped up" in a three year old thread
Not to worry - and that sadly is about the only "advice" I can give about your "feeling extremely exhausted" the day after the injection.
Worrying about it is not going to help your recovery.
This is not an uncommon side effect as is experienced by so many of us on this forum and you appear to be doing everything that would be suggested by others more "qualified" than I am.
If the headaches don't ease after a couple of days, I suggest you speak with the nurse (or your GP) to see if it's the hydroxocobalin injection that is the cause as it doesn't "suit" everyone - me included. Cyanocobamalin may be an alternative.
Please remember that I am not a medically trained person.
Thank you Clive for your helpful advice I will keep going and keep taking the co factors, just bought some carrot juice also to help I think the exhaustion like you say is just a side affect and should pass. Thank you ☺️
Hi Salphy Everyone seems to be different in how the react to B12 injections but it seems pretty common to feel worse before it gets better.
Are you sure you had methylcobalamin injections? Hydroxocobalamin is the normal treatment in the UK. I know it has been mentioned to you before but have you had a chance to discuss your neurological symptoms with your GP? For neuro symptoms the treatment is injections every 2nd day until no further improvement (reviewed at 3 weeks) then injections every 2 months instead of the 6 loading doses then 3 monthly treatment it appears you are on.
Thank you. Oh yea sorry its the hydroxocobalamin I had.
No I haven't seen her yet but I go back in a couple of weeks so see what she says then. I told her about the vision at the time and the pins and needles has only started since having the injections. The tremor I've had so long I don't think it's connected.
They couldn't fit me in for the 6 injections over 2 weeks so no way they'd be able to do them every 2nd day. I've had the six every Tuesday and Friday over 3 weeks. They said they hardly fit anyone in within 2 weeks and it didn't matter.
Going to get my blood test next week then see her the week after. Hopefully start feeling it soon thanks x
Well it seems strange that they are unable to fit you in for these injections that's all. Why can't they arrange for the district nurse to come and inject you?
I don't know I never thought to ask. I always thought dn was for people who couldn't get to the surgery. I'm also not sure they have a dn. I think all the gp's in the area share a dn team. But to be honest they brushed it off as not mattering I don't think they'd go to the trouble. I had to wait nearly 4 weeks from gp prescribing them just to get the twice weekly appointments.
I haven't got much hope in them with how they've treated my dad for his under active thyroid and reluctant to treat me when I'm sub clinical with antibodies and symptoms.
But the other gp in the area wasn't willing to listen or treat at all. So I wouldn't even be getting b12 vit d or folate treated with him. Haven't got many other options. The only other gp in the area is under special measures and rated requires improvement by the cqc x
I would see the one in special measures. It suggests not toeing the line for some reason and that might mean they are giving half decent treatment to people with thyroid issues and B12 issues. Also they might well be able to provide for your health needs as will not have so many patients.
Welcome to the roller coaster ride. Once you start on B12, you can feel better (even worse) before you stabilize.
Start a log book and assess all your symptoms on a daily basis. You may notice new symptoms showing up. Some may be due to the jab.
The confusing thing is that they are all very similar. The ones that repeat in sequence for 48 hours following a jab are the ones that tell you the jab is working.
Pain is a counterintuitive symptom the arises from nerve repair. As the nerve gets repaired, the signals get stronger and the brain can interpret this as pain. Working through this muscular pain gets the brain to recalibrate and the pain goes away because it is an illusion. Getting started is the hard part.
You need gentle range of motion exercises (yoga?) to stimulate the nerves that drive the muscles you are using. The repair of the nerve is then stimulated.
The severity of the headache and sometimes brain fog I get after the jab I find is directly proportional to how low I was before the jab. I call it a detox symptom. The metabolism kicks into high gear once it gets B12 and then floods the blood with byproducts- mostly CO2 and water- but it takes a while for the rest of the body to get rid of these byproducts and stabilize. I've tried pain medication for the headache but find I then get other symptoms so I try to avoid taking pain meds.
The logbook allows you to monitor your progress from jab to jab and figure out when you need more frequent jabs.
Thanks, I will start a log book. Does it show on your bloods if you're not yet stabilised? Say the 6 injections haven't been enough or will my levels be raised now regardless?.
I didn't know b12 boosted metabolism. Could that be why I've been feeling hungrier than usual? X
Once you start tracking your symptoms and request more frequent injections, your GP will want to continue to test your blood.
Unfortunately for some this has lead to the withdrawal of injections because the results came back as "normal".
Get your GP to buy into the idea of treatment by monitoring symptoms and ask for suggestions for monitoring severity of log book items.
Provide a hard copy list of all symptoms to your GP and ask for it to be included in your record. This is to help get your GP past the "I've got a hypochondriac on my hands" stage that we all have gone through when asking for more frequent injections.
If the GP insists on blood tests remind him/her that with injections the results should be off the top of the charts >1500 pg/ml (ng/L) for the repair of nerve damage.
Thank you so much for this information pvanderaa. I know your post is 2 years old but my case is exactly the same as Salphy's. The pins and needles only started after the injections, and like Salphy, I feel terrible after the shots. I even developed a very "mild" migraine in the evenings. They were mild and by no means a full blown migraine attack. I haven't had migraines in years and after the injections this was one of many new symptoms that weren't there before. These migraines are gone now. Including Salphy, I think I found about 5 people online that get sleepiness attacks after the injection, and countless others that feel worse rather than better. Thank you so much for the explanation about the nerves being repaired. I read this same explanation over and over again but I just keep getting worried every time I feel like this. By now there's way too many people with these same paradoxical effects from the injections to call it coincidence. Its almost a rule that the injections will make you feel worse before you feel better. How long do you think it will be until there nerves are repaired in a worst case scenario? 2 months? 4 months?
Do you keep a logbook and try to assess the severity of each symptom?
Worry and stress consume lots of B12 and you run out sooner.
Restart your logbook with day zero at each injection and you will begin to see a repeating sequence of symptoms over 3-4 days after each injection.
Once you recognize these counterintuitive “good” symptoms you get some control back and can stop worrying.
You can treat anxiety as just another symptom. It is a psychological symptom that is a side effect of neurological damage.
You can monitor “progress” of repair of nerve damage by monitoring the peaks and lows over months. Peaks should gradually get better and lows should be less albeit there will be a roller coaster ride each cycle.
If if helps I cope much better after my injections now. I still get tired but I can mostly carry on with my day now. Before I would completely crash straight after them. It's probably taken about a year-18 months of the loading doses then 1 every 3 months.
I recently bought b12 from Germany and got my RN friend to inject me at 6 weeks then had my usual 6 weeks later. I had a bit of a reaction at the injection site from the German one (red and burning for a few days) but didn't crash after the 6 week one and 12 week and no return of symptoms in between
So I think I'll be asking for more frequent soon I just absolutely hate injections.
Sorry I meant thyroid antibodies I'm doing them privately as gp can't test t3 or t4 and I like to know my levels before I go so I know what to expect and ask for. I'm going to get if antibodies tested too thanks
Hiya, I'm ok thanks. Still not 100% but I'd say about 90% better most days. But I do have other conditions which I think are to blame.
I have injections every 8 weeks now. Still make me feel like i need a nap or get a bit of a headache afterwards but its definitely not as bad as before. I can push through it now. X
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my tremors the same, still looks like things are vibrating when I look at vertical lines (e.g. radiators, edges of door frames) still getting mild pins and needles in finger tips but don't seem to be sighing as much.
I got headaches with a couple of then too, others I just felt drowsy and exhausted. But then some I could hardly feel and some hurt like hell. I think I've read too many stories of people feeling better driving back from the surgery after having it I was wishful thinking.
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