B12 deficiency and injection frequency.

[Jcallag02]

Hi everyone, sorry in advance for the long post. For 6 plus months I’ve been have heart palpitations, night sweats and anxiety waking me up at night. My doctor thought it was anxiety and gave to relaxation techniques then ordered echo and labs which came back normal.

Then 3 months ago I started having eye and facial twitching that migrated to my calves then to the rest of body within a week, which prompted more labs which found out my B12 was at 97.

I was immediately started on a series in 12 shots which seemed to help a lot and the twitching became very little but as I was weaned to a not so intense replacement therapy the symptoms seems to come back.

Currently I’m having injections once a week and my levels are normal but recently in the last 2 weeks my twitching has become very bad again and the facial twitch has returned which had been gone for almost 3 months since the first round of 12 injections.

I’ve had an echo, brain and cervical CT, and brain MRI all normal with the only explanation being B12

I was wondering if maybe this could be a sign of my nerves healing? Or am I dead wrong. Did anyone else ever experience this? Looking forward to your replies thank you -Josh

[Nackapan]

My symptoms were different but eyes continue to be a problem. I do get twitching aching legs and hot flushes and night sweats. Also tremors. My b12 was 106. I'm back on every other day Injections at present at the surgery. Symptoms are improving. Initially I did get worse before better. So if your symptoms don't settle you may need more injections for a while. I do find if I do a little more symptoms return. Pacing is difficult as every day different at present. Hope you improve soon

[Av42]

I had heart palpitations and night sweats before being diagnosed with b12 and folate deficiency. Would definitely recommend asking for folate levels to be checked as for me once those and b13 levels were treated, symptoms mostly disappeared. Didn’t have any twitches but might be worth getting folate tested . I had five injections in 2 weeks when starting out and was prescribed folic acid but I also made sure I drank coconut water and ate bananas as I believe potassium levels can deplete after injections but not sure if I’ve read it or just plucked it out of thin air !!! Sorry hope it helps .

[Nackapan in reply to Av42]

I've read it too. I forgot to say ferritin levels good to check and vitamins d too. I'm taking supplements and eating bananas and eating liver!! And drinking juice. Also taking vits for eye health. Never taken so much stuff but our bodies need healing with as much help as possible.

[Hidden in reply to Nackapan]

How are your D levels?

I have had same symptoms but they self corrected as I’m on a higher regiment. But still show low D.

[Nackapan in reply to Hidden]

Were 21 once but after loading dose , now on maintenence dose have maintained vit D between 50-60 now. Stil a bit under I know.

My ferriton levels checked twice in my life now went from 61 to 39 in a month on B12 injections. So taking iron . Not in huge doses though as I upped meat and drink juice with it also have plenty of non heam iron veg. Will get my bloods done again in April. I should be super charged but not felt it yet. I think so much energy goes into repair.

[GastritisB12]

I had the heart palpitations (fast beat) night sweats and too awake at 3am. Most of it went away after loading doses but then came back 3 weeks later because I wasn't taking folate which was low.

I still have the 3am waking which I now think could be low blood sugar at night, so get your blood sugar checked just in case. Mine was 6.7 at 6am which is prediabetic apparently.

[Nackapan in reply to GastritisB12]

Yes I'm very dependant on regular food and blood sugars can dip which make symptoms worse. My fasting blood sugar is fine. My husband has a machine as diabetic so have tested a few times with that. I do take 400ug folate daily thank you. Am taking iron as ferritin levels dropped. May be a reason for hr thudding at times. Next blood test in April. I'm also awake 0400hrs like clockwork

So annoying. I do have a glass of milk before sleep now which seems to help bs a.m and not be too jittery. Does b12 speed up your metabolism I wonder? I've never regained the 10 lbs I lost in weight. Back to my skinny teenager self lol but without the energy . Thank you. I hope you sleep better soon

[GastritisB12 in reply to Nackapan]

Oh no you too! I am really disturbed by the early morning wake up, I was never like this before. Yes I am finding that I am more hungry now that my B12 level is high, I wonder if its connected. I tried eating a banana when I have those early morning wake ups, not sure if its helping. I lost 10kg, but I also have autoimmune gastritis.

Hope you get better soon.

[Happysmile]

Hi, I had night sweats, twitching, calf pain, memory recall problems etc and my B12 was 102. After loading doses I have continued with three injections a week. Without these, my symptoms return quickly. At the start I felt much worse and was up and down, physically and emotionally. Initially my iron also dropped quickly. I take folate on the days I inject to keep my levels. high and also take magnesium glycinate. I also make sure I eat lots of potassium rich food and drink. There’s no point testing B12 levels as they are consistently over 2000. Advice is not to retest after starting injections as it doesn’t show what’s happening at cellular level. Personally, I can’t see me ever being able to reduce the frequency of injections as I feel so unwell without them. Hope you feel better soon.

[sbadd in reply to Happysmile]

Funny you say your iron dropped as mine halved within 4 months of starting loading doses , but i was told it couldn't have been the b12?? I disagree as never had a problem with my iron in my lifetime until i had loading doses.

[stuart4112015 in reply to Happysmile]

Testing B12 levels with a blood test is inaccurate..we can all have plenty of B12 in our system, but be unable to absorb it..get the INTRINSIC FACTOR in your gut checked..without that, our bodies cannot absorb the B12..hence the deficiency..

[Jcallag02]

Thank you for all the replies guys! Gives me hope that I can get this figured out. Honestly I’m only 35 and have never been sick, never smoked, don’t drink very much, eat pretty healthy and stay in ok shape. So this has been incredibly scary and frustrating.

Since being diagnosed with B12 I’ve had a million labs drawn, ct and mri of my brain and everything has been ok besides my folate which I am now taking a supplement and that has come up.

After I had the loading dose my symptoms diminished quite a bit but then my doctor took me off and told me to take none for 2 weeks to be tested again. When my levels came back in the 500s she told me I wouldn’t need the shots anymore, within a week my symptoms came back which lead to another loading dose. This has happen another time. I feel like my doctor thinks I am just getting a placebo effect from the large doses and it’s not really helping my symptoms but I don’t feel that way. Now I’ve been on 1 shot a week for a month and my symptoms are back again and as bad as they’ve been since the starting of all this in November. So this has been very frustrating to say the least. Thanks for the help everyone, it’s nice to have a community to lean on.

[HBerry in reply to Jcallag02]

I am taking weekly injections again as of yesterday. This is the second time my doctor tried to switch me from weekly to monthly. Both times my symptoms started to come back. Actually I just received my shot yesterday after my second stint off the weekly pattern. I lasted about 10 days. I have realized both times now that it may take a few days to a week for my body to reset. At least I’m hoping it will. If the doctors that I’ve been seeing had a better understanding of my symptoms I think I could dial in the correct frequency for me. It sounds like that is maybe what you are experiencing. It’s tough to convince a doctor to prescribe for symptoms instead of the numbers on a page. The last I checked my numbers were at 1800 and still I need an injection a minimum of once a week.

Yesterday I came prepared for my doctors visit. I printed off my symptoms, daily B12 journal, some literature I received from this site and a current blood panel that I had taken recently from another source. At that point either she was going to listen or I was switching doctors. Luckily she listened. At least for now. It’s hard to say if you need injections more frequently but in my opinion it can’t hurt to try. I believe I should be on at least twice a week so it’s my goal to find the right doctor who will allow me to experiment with injection frequency until we get it right. That hasn’t been easy. I hope you get it turned around soon. Good luck!

[stuart4112015 in reply to Jcallag02]

Please stop spending so much money at the doctor's office...your body is telling you what it needs..just listen to it..99% of doctors, even if they mean well, will not and cannot diagnose and treat pernicious anemia..they don't know enough about it, to take it seriously..the injections will not harm you...do whatever makes you feel better..sounds like you already know the problem..just keep injecting once a week..

[Sagandeep]

Yes, it happened to me, when I first started weekly injection, all numbness, tingling went, then again weekly injection, now some tingling occasionally comes and go, it's a part of nerve healing, I guess.

[Ctadds1]

Your post is quite old but I’m wondering how you are doing. My situation sounds very similar to your? Wondering about your progress?