I'm sure you guys can help me. You always do. I SI cyano daily. And I have been feeling better each week with little set backs for 5 months now. Nothing too bad. But my cyano B12 was lost in the mail, so I had to mixed up a vile of powdered Methyl, that I bought from the UK when I first started to SI, with a prescribed saline solution. It was slightly thicker and more deep red than my cyano. The bottle was supposed to last a month with daily injections, but it was almost gone is 5 days, giving myself as much as I took of Cyano. Which is more than the pharmacist said to take after he did some math conversion from ml to cc's. Because my syringes are in cc's. I believe my suggested dose was 1ml daily which is 1000mcg, right? My Pharm, said to take 13cc's of methyl. which is about 3/4 of an inch once in the syringe. But my cyano fills the syringe if I draw up an ampoule. So, I decided to inject the same amount of methyl as I did cyano for about 5 days.
The first night I had insomnia so bad and my pee was pink. Never was on cyano. After that, I slept maybe 2.5 hours a night for a week. I was just not feeling great. I was sure I was getting confused from no sleep. I am now back on cyano for the last 4 days. But, I am still shaky, I am getting things confused, Im very clumsy, forgetful. I almost feel like I just started injecting. I'm nauseous, If I don't have something in my tummy I feel like throwing up and I get shaky. Just a piece of toast helps me feel better, and I have terrible headaches. I don't know what is going on. I am lethargic, and generally feel pretty cruddy and can't go anywhere or do anything. I just want to lay around and feel badly. what could be going on? I feel like I just started my treatment like I never had B12 before. food doesn't sound good. Except a turkey burger. I don't know why but a burger sounds good at any given time. LOL I feel very anxious, and edgy, very irritable. last night my thigh was twitching. my neck is sore and this headache is relentless and my lower back on the right is nagging at me.
did I over do the methyl? What could be happening? I can't spell, I get my words wrong. I am just feeling a bit stupid and clumsy - out of it and sore all over. And thankfully, I have lost 23 lbs in the past 5 months but on the methyl, I lost 4 lbs quickly in just that week alone. Yay, but why? Before b12, I could not lose a pound if I starved myself for a week. where most people lose weight on PA.
Thanks so much for any help. Hope its not too confusing.
Ps. Also can't seem to regulate my temperature. My temp is 95.1 - 96.4, but I'm either sweating or chilled. Mostly hot and it's nice and cool here right now.
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EllaNore
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Hmmm, I definitely felt off when I was restarted on methylcobalamin after having my injections stopped for some time , weak and mentally not quite right. When I changed to hydroxocobalamin I felt fine. It was a very stark and tangible difference.
So perhaps methylcobalamin didn't suit you well? And it sounds like you took a very high dose -what was expected to last a month in 5 days, plus the fluid was thick and dark red and it made your pee red . I'd hope, if you drink plenty of water, make sure you are getting enough rest and other nutrients you may need, you'll be back to normal soon enough. The muscle twitching might suggest you are low in magnesium or dehydrated?
Like you say early in treatment symptoms. Or a bad day
Mustve bern the change of b12.
Its been reported on here that methylcobalabin can heve bad effects for some.
I woukd always from now stick to the single dose ampoules of cyanocobalamin.
Im sure youu will get back on track.
Might take a while.
Natursl yoghurt.
Strong ginger beer sipped helps with head pain and nausea as do little and often meals.
You sound slerp deprived too.
Jusg keep up the pain killers.
Some find travel sickness tablets help.
All short term. Your pharmacist could advice you if accessing a doctor too difficult.
The weight loss might be due to s higher dose of b12 uppinv your metobolic rate.
I used to shake snd ferl hungry alm of the time with nausea and headaches/ migraines.
Also lost a stone in weight . A back on now .
Perhaos get some bloodd done too.
Thyroid checked
Iron ect
Hope you turn a corner soon.
I guess you overdone the methly, Ellanore.
Anti-sickness Injections contain B6 So I think you might Have an inbalance of B Vitamins. Google B6 foods (Turkey Burgers, Meat, Bananas, chicken) I would try and stick to food and see how you go.
Its all trial and error, but if you feel turkey burgers are helping stick with them. Drink water.
You lost 2 Stone in weight (now you can see why super models and famous stars have B12 injections and why they have them in beauty saloons ...So they can control their weight).
Hope you're feeling better soon.
It might be good if you have little and often, until your stomach re adjusts.
Ok! Thank you so so much. If you don't mind i will just reply once to you all. This is what i thought. You all said what i was thinking. I have been thirsty, so I've been drinking lots of water. And I'm sipping ginger tea right now. Even my gums were sore. I'm taking tramadol and acedamenophen for pain. I don't like methyl. I definitely can't take it. I will wait for all this too die down. I'm so grateful you're all here. It makes me cry knowing, i have a place to come. Thank you all so much!!!
The weight loss is needed. So I'm good with that. Could lose another 50lbs Lol
But gosh i feel terrible. I bet this is the storm before the calm.
Thank you all again. Hope your all have a nice weekend. 🦋🫂🦋
Im being tested for PA..my symptoms are similar to yours so wanted to say I sympathize!! I have thyroid problems but Vit B12 was far too low (my grandmother died of PA)..so I started BetterYou vit B12 daily oral spray 1200 ug methylcobalamin...& it worked.I felt so much better over about 18months..when I had a blood test my B12 was slightly over so was advised to stop B12 so I did a few months ago but now feeling dreadful with your symptoms...so Ive started the drops again (2 days ago,)
I mention this to you as these drops may help you??!!
Hello there PolyannaYorkshire, Thank you so much for your empathy and for the b12 info. I am very sorry about your grandmother and you history. I read your Bio a little and it seems hyper/hypothyroidism runs in your family, and with your grandmother passing from PA, I feel it is important everyone sees your question here. They will be able to help you I know it. I am so new that I don't know much about thyroid and PA. But there is a correlation between them for sure. Others here have both.
I read a post that you wrote that you were Hyper and now Hypo. I would definitely write a nice question, including that info. Don't be afraid to write too much info. The more info the better. people will jump right in. They are all so smart here and so helpful.
One thing I was curious about is that the B12 taken orally helped you so that is good. I would mention that for sure. Also, I think if your B12 comes back a little high because you are supplementing, it could give you a false reading. So maybe others might have a suggestion to maybe stop any B12 before any blood work for PA, so it doesn't cloud the readings. I hope someone else chimes in to help. But if you make a new post, people will definitely jump right in. I look forward to what everyone has to say. 🦋
Ok good. That is pretty crazy your entire family has thyroid issues. This is a good forum for that too because a lot of PA sufferers also have thyroid issues. So I am sure they can really help you here. But if you need help, people may not see your question buried in this thread. So please start one if you still have questions. Good luck PolyannaYorkshire. and thanks again. 🦋
I made myself a turkey burger patty, zucchini mushroom egg omelet. I was going to eat it slowly, but i took one bite and then i devoured it!!!! 🤣🤣🤣🤣 I'm already starting to feel better.
Whew what an ordeal! I'm so sorry but glad you're feeling better!!
As others said, some people can react badly to methyls. I took it tablet form years ago and had a very bad reaction.
Once you stabilize a bit, consider building up a stock against situations like that - lost or delayed packages, summer heat waves, supply shortages. Even once in a lifetime (hopefully) events like covid created issues. I try to keep several months supply on hand, and preferrably 1 year when I can manage... i'm quite paranoid about going without as I backslide very quickly.
I hope you recover quickly and can get back to the business of healing xx
Thank you Jade. I'm starting to feel better. I messed up. I'm paying for it for sure. I am going to try and order extra every other time. I have another shipment coming, so that won't happen again. I'm very scared to run out too. I hope i can get that much eventually. It's cheap but it adds up. 🦋🫂🦋
Don't beat yourself up. We've all "messed up" at one point or another in this journey. You couldn't have known how you were going to react to the methyl. Btw i've read that you need much higher doses of methyl to get the same effect as 1mg cyano or hydroxy but i can't find back that source anymore. Anyway just to say you might not even have 'overdosed' in that sense.
It does add up, unfortunately. We do what we can Glad you're doing better & have another batch on the way
Live and learn, right?🤪 I did not know that about Methyl. I have learned so much from all of you here. I am so grateful to be able to come here. This has been a hard journey. But you all know that. I am kind of feeling sorry for myself today. LOL I need to go to bed. haha
sorry to hear of your experience ElleNore. Since cc==ml a 13cc dose would be 13 ml right? Thats about 13 times normal injection dosage. The coloured pee sounds like your body was getting rid of larger amounts than normal.
The trouble with methyl I think is its a form of B12 with methyl group attached which can speed up methylation and metabolism if taken in excess. This can cause uncomfortable side effects although I dont really understand why deficiency symptoms were exacerbated by it. I took a lot of methyl B12 in early stages of my treatment (before injections) and I think it contributed to anxiety/problems sleeping etc. I was taking oral dosages in the 5k-10k range. Hydroxocobalamin is gentler in that way since its inactive but the body can control converting it into whichever active form is needed (methyl/adenosyl). Cyanacobalamin also requires conversion so also has less risk of causing methylation related side effects.
to needing 1000mcg of methylcobalamin for maintaining B12 status as compared to the much more moderate amounts recommended if cyancobalamin is used. I'm not convinced by this though. They point to one study saying:
"A clinical trial from Korea found that 3 months of 1,500 µg/day of methylcobalamin raised B12 levels, reduced or eliminated neurological symptoms of B12 deficiency, and lowered homocysteine levels (Kim, 2011). This trial was done on people who had a gastrectomy and, therefore, had vitamin B12 malabsorption, indicating that for most people 1,500 µg/day would be more than enough. There was no comparison group receiving cyanocobalamin."
Its a really bad example because these groups had B12 malabsortion due to gastrectomy and a B12 deficiency, so much larger amounts of B12 would obviously be needed to get enough in via passive absorption and to help correct the B12 deficiency (actually I think 1.5k is a bit low but depends entirely on how deficient they were ha). One group received 1.5k mcg methylcobalamin and the other received 1k mcg cyanocobalamin injections. I dont think this study says absolutely anything about how effective methyl B12 is at maintaining B12 status in non B12-deficient people with intact stomachs/working intrinsic factor/no malabsorption.
Then there's a methylcobalamin trial in vegans with raised MMA which used 1000mcg. Again though, raised MMA is suggestive of deficiency so 1000mcg makes sense as the dosage to treat deficiency, not as a maintenance dosage to keep B12 levels stable in a healthy person.
The Romanian study quoted is more or less useless (as they suggest).
My conclusion is that these studies dont tell us anything useful about how much methyl B12 would be needed to maintain adequate B12 status in a healthy person.
Other than side-effects or metabolism issues I dont see any reason why methyl B12 would be a poorer choice or require massively higher amounts though, although it does seem like more research is needed. I still favor a mixture of all three natural forms as I feel thats closest to what the body would expect in food. For large injected doses though , cyano or hydroxo makes sense I think as the body can control/throttle the effects on methylation more easily.
This is the site from where I bought my methyl 5 months ago. I had it in the cupboard in powder form and when I ran out of cyano, i turned to it and activated it with the 10ml saline. On this page, you will see a picture of a guy with a full syringe of b12. Also when I use cyano, the ampoule fills my syringe and then some so I thought maybe my pharmacist got it wrong so I filled the syringe. that is really my fault. But what this huge amount did for me, was it made a big difference in my foot pain. The nerve pain was making it very difficult to walk all this time. and when I took all this B12, I definitely felt a difference after the 4th day or so. also, I really feel I noticed, I didn't really feel I needed to take it the next day but i did anyway. Today I have not taken any B12. I feel I need to let it calm down a bit. I was unable to sleep last night at all. So I want to let the methyl calm down before I add cyano to it. I don't know. Just don't want another sleepless night. However, I do feel better today. Still feel a bit off but better than yesterday.
I really feel the methyl was actually working really good and that my reverse out symptoms actually sparked back up for a few days. I feel a positive difference in my feet. so maybe this gave me a little more progress than I had. I don't really know. but I do feel a little different in a better way. The anxiety and jitters and nausea were really bad and I did have some word issues and speaking issues for a couple days. Much better today. An interesting accident to learn from for sure.
I feel it was my fault though. Really. when I was using methyl at the beginning, it seemed like such a small amount in the syringe. where the cyano filled it 1.5 times, so this time I upped the methyl without thinking. I guess if I trusted my pharmacist I would have stuck to his amount. But them not knowing much about it, I didn't fully trust it was right. I do now think it was right. I use a small diabetic needle because I buy them for my dog and it is easier to just use them, and the needle is really fine. so he converted the amount for me to use those needles. he didn't seem really confident and seeing how much of the cyano i used, I figured I would up it a bit. so really this is all my fault. I have learned my lesson though. I'm loving the weight loss though. Finally! My weight gain has never made sense. I do not eat a lot and I eat a good diet. I thought it was just because I couldn't walk to get the exercise I needed. Also, thought it was from meds like gabapentin. so I quit all pain meds for 15 years now, until the PA diagnosis. Now I only take Tramadol and acetaminophen. That is it. Anyway, thanks for all the help. I did kind of scare myself.
There is an interesting study (in rats mind you) that found that massive doses of methylcobalamin were effective in nerve regeneration. pubmed.ncbi.nlm.nih.gov/802...
Methyl B12 is a very important active form of B12 and I think it has great potential for healing, the trouble is the side effects since (other than the small amounts of methylcobalamin in some foods) the body only produces methyl B12 from other forms when it needs to and its then used in the body fairly quickly, so its a very unnnatural state to have so much methyl B12 in the body at once. Doesn't mean it cant be effective with nerve regeneration but it has a cost in the side effects!
"In high-dose initial therapy, methylcobalamin is not the ideal ingredient. High-dose methylcobalain (sic) can lead to overmethylation for people with pre-existing methylation disorder because the body can no longer control the production of methylcobalamin in this way.
The best option here is the natural precursor, hydroxocobalamin. Firstly, it demonstrates a better storability; secondly, it allows the body to control the production of the active form itself. "
Would say I'm not sure a "methylation disorder" is required for methyl B12 to cause such issues , since the phenomenon of such a reaction is fairly common that I can see, especially when larger doses are used.
Thank you Technoid. I am back to my cyano, did not take any b12 today. I wanted to give my body a break. did not sleep last night but I feel half way decent. I'm a little tired. I hope I didn't hurt myself. In 5 days I took maybe 15 days worth of methyl. There is still some left. so maybe 3 times the amount. I think I will let my body calm down. I don't know if I should get my blood tested? I really don't have access to that right now. Plus I would have to tell them I messed up. That would not help our cause. so I don't want to tell them. I can't get Hyroxy here. Very expensive to ship. I had blood work done on sept 8th and no doctor has discussed them with me so I don't know what they mean. I will post them in case anone can tell me if I have to worry.
I had started daily injections a month prior at the time these were taken. so I had B12 in me.
Vitamin B-12 >1,500 pg/mL 139 - 931 pg/mL
Folate >24.8 ng/mL 2.76 - 20.00 ng/mL
Methylmalonic Acid 0.14 nmol/mL <=0.40 nmol/mL
Intrinsic Factor Blocking Ab - Positive
Homocysteine 8.1 umol/L <15 umol/L
Parietal Cell Ab IgG 22.8 U <=20.0 (Negative) U
My numbers are the first set, the suggested levels are the second. I see the suggested 139 for b12 is much lower than my first test allowed. it was 200 - 500. wow, that is way too low. People would not be considered B12d at 221 like I was and I have PA. This is USA numbers. wow, this needs to be raised!
No, Not because of Injections, Just have to keep drinking fluid and gradually it will decrease, google folic acid, and try to cut back on food that contain it. Do not go overboard or you could end up worse off. You are not massively over the limit.
"Plus I would have to tell them I messed up. " Well.... it seems to me from what you described EllaNore, the pharmacist seems to have prescribed you a higher dose than was needed, and if so thats on them, not you.
Couldnt help notice your folate is above the high bound of the range, may I ask how much you're supplementing?
Ive only taken one folate pill in my entire life. And it made me sick. That was a few weeks back. You guys might recall. I felt like i am now. I can't remember if before this test or after. If i can find my post about it i would know. I'll have to look for it.
Thats interesting! Ah yes I think I recall now. Its strange your folate is so high.... unless its a folate trap situation? (if you never took folic acid), but I dont think I know enough to advise you what to do there other than getting that looked into.
Without B12 and an enzyme called "Methionine Synthase" folates can get stuck in a form the body cant use, in whats known as "folate trap". I wonder if thats whats going on here but thats just my speculation as I dont know your medical or dosage history (or have the right expertise) to really draw a conclusion here.
Folate Trap is one reason that at least low dosages of folic acid are prescribed when B12 deficiency treatment starts as the synthetic folate can break the deadlock in the folate cycle and get things kickstarted there again. When folates are trapped like this, B12 symptoms can worsen despite normal folate levels in blood (because those folates that are present cant be kicked forward to the next stage of folate cycle metabolism and used). Ref : cureus.com/articles/36425-n...
If it was a huge dosage pill (5mg) I guess it possible it might have shot the folate up over range but interesting that would still be the case weeks later. Folate is stored in the body but only four month or so's supply (ref : nhs.uk/conditions/vitamin-b... ).
Edit : recall it was 1mg folic acid so yeah im stumped on a good explanation.
ah i remembered that there is a good bit of folic acid fortification in many foods in the US, perhaps this is making a contribution but strange it would be enough to go right past the upper bound.
If I remember correctly. They are now in the process of doing the exactly same thing here in the UK. I believe Martin Hooper had raised questions as to whether it was a good idea and people not being diagnosed with B12 soon enough.
OK Technoid and Sallyannl, I took a 1000mcg folic acid 3 months ago. My folate test was less than one month ago. Next time I am at the cancer center, I will have them check again. They always draw blood. so I took the pill 2 months before my test.
these were my original first blood tests for B12 d. Notice the B12 range. different from my recent lab range which was 132 - 931. thankfully my doc went by my symptoms
taken 5 months ago
Vitamin B-12 221 pg/mL 232 - 1,245 pg/mL
Folate 17.7 ng/mL 4.6 - 34.8 ng/mL
I got 9 hours of sleep last night. Not all at once but I feel much better. I guess I had better take my regular injection today. I didn't take one yesterday. Kind of curious to see how I feel if I don't take it today.
I don't know if this makes sense, but that extra boost of Methyl, made a difference in my foot. It still hurts but it definitely changed for better. thank you both for your help!
Thank you deniseinmilden. You know, I probably said the wrong thing. ml cc's I don't know what's what. So it's probably me. I was going by memory and heaven knows PA took that. Lolol but he has the instructions that came with it. And he did struggle with the conversion. But you're saying a conversion wasn't even necessary? Sheesh.
Yes a 5 day headache and so jittery. I wanted to crawl out of my body. Haha 😵💫 I learned my lesson for sure. Oops!
You did what we are frequently told to do: Ask a professional. Indeed, you asked the precise sort of professional you'd have been advised to ask.
The pharmacist should have made absolutely sure what question you were asking, and why, and made sure they communicated the answer clearly and fully to you.
Self-blame is not warranted at all. Though almost all of us do so, at least sometimes.
not everyone gtets on with methyl cobolamin and experience increased anxiety.
If the solution was thicker and darker that suggests that it was more concentrated. Not sure why your pharmacist suggested 13cc. Icc = I mil so seems like a huge dose to me.
PA and weight has different impact - some gain - some lose - definitely not the case that most lose weight.
Do you know what quantity of methylcobolamin you mixed with what quantity of saline. That would give you the concentration and determine what volume you needed. Does sound as if the pharmacist didn't give the right advice but difficult to know why, where and how the miscommunication took place, though they are the professional and should have made sure they had all the facts before they gave you advice.
Thanks Gambit, I do feel it was my fault. It was thicker than the cyano, but when I first got the methyl, that was all I had and never say any other kind. when I got my cyano, it was lighter and thinner. It did cross my mind that it is a deeper red and thicker. I should have known myself. I really messed up. I was to mix 10ml of saline to a tiny bit of powder in the vile. and that was up to a 30 day supply. This is what I bought and where I bought it. it looked so much like the PAS site that I thought they were linked. But that was at the beginning. I've learned so much since then. I am sure I am the one that messed this up. At one point when I saw how much cyano was in my syringe, I thought my pharmacist must have got it wrong with the methyl, So I gave myself more. that is totally my fault. I should have asked someone here. The cyano fills my syringe but the amount of methyl was only about 3/4 of an inch of the syringe so I thought maybe I needed more. That really is my fault.
From their site : "Each vial contains 40,000μg (40mg) of pure methyl B12 that you’ll dissolve in 10ml of saline. If you inject with 0.3ml insulin syringes (which is what we recommend), you’ll have 33 shots, each with 1,200μg of B12.".
If you used almost the whole bottle, thats like 25+ shots in 5 days. Not surprised you're a bit on edge after that! I see you are testing for us whether B12 can be overdosed! 😁
I think get some sleep and give some time to let the methyl B12 wear off for a bit
Even that description doesn't quite work. It would make sense if you dissolved the methylcobalamin in sufficient saline to make up 10 ml. But not if you dissolve it in 10 ml as that would increase the volume to something more than 10 ml.
Not saying this out of pedantry - but when such descriptions are wrong, I question the rest of the information.
The vile comes with a tiny amount of powder in it. I then add the 10ml of saline and it fills that bottle. so the bottle is virtually empty until I fill it. I read that I could take as much methyl as cyano, so I did. and it was way too much. I didn't take any B12 today and I am still doing ok. In fact Im feeling much better as the day goes. I will see if I need to inject tomorrow. Now I am off my schedule so I have to see how I feel. Thanks helvella.
Ok I have it wrong. The syringe is a 1ml/cc syringe, the 13 he wanted me to use was just .13 of an ml. The syringe is a 1cc/ml with intervals of 5, 10, 15, 20 up to 40. That is where I got confused in the amount. I draw up cyano in the syringe twice because it doesn't hold all 1000mcg. I do have to poke myself twice but it is such a tiny needle I don't even feel it. I already had all these syringes for my dog so I use them too. The cyano fills the syringe 1.5 times, leaving some room. the methyl was only supposed to be drawn up to the 13 mark. so I did indeed take too much. But I only took the full syringe of methyl three times in 5 days. the first two days were at the correct 13. Does that make sense?
EllaNore, I am by no means a doctor, nutritionist or expert, but I'm wondering if you don't tolerate the methyl B12?
Those symptoms sound pretty similar to "overmethylation" symptoms, which I would generally describe as 'whole body aggravation.'
I get a lot of those symptoms when I take too much methyl folate. I actually get a lot of the same symptoms you described, even if I take too much hydroxocobalamin which is supposedly not quite as 'bioavailable' as the methylcobalamin. When I was taking too much methyl folate I had really bad symptoms. I would struggle to sleep and then have nightmares so bad I would wake my partner up by yelling in my sleep. My muscles in my upper back and neck got a locked type feeling. I would wake up soaked in sweat and need to change my shirt.
I get itchy/twitchy and feel like my skin is 'sharp' if that makes any sense. I will also struggle with extreme insomnia, headaches, increased joint pain, lack of appetite and feeling sort of slow or stupid. I hope you feel better soon!
Yes Cobalt1312, I absolutely had all that. I'm so glad you brought up the neck and back. My neck and shoulder blades are so tight and sore. I definitely overdid the methyl. Since then, I didn't take any b12 for two days, but just did this morning. I'm sweating like crazy and ache in my back. I only took a shot because i have to go shopping and didn't want to crash while doing so. I want to see how long i can go before symptoms return. But i chicken out. I usually take cyanocobalamine. But my order was lost so i had to use the methyl. I used to much. It is more pure than Cyano, so i should have used less. Man that was a ride. So yes, 100% you are correct. I wonder if i should have went longer without injecting. I usually inject Cyano daily. But now have all the methyl in me. Not sure how long it takes to dissipate. I'd like to inject less often. I just have to go without and see what happens I guess. Thank you!! Good luck to you.
Good morning EllaNore, I have just been reading about shoulder and neck pain and came across an article that says people who take folic Acid are prone to this. Can you remember when all this started ?
Was it prior to taking the Folice Acid or after.
It might also be associated with High folic acid but low B12. Do you keep a diary? Its good to have something to look back at, how you feel, what medication you took, what you ate etc.
Good morning my friend, I have had neck issues most of my life so I always attributed it to my injuries. (several motorcycle accidents and a rollover) But when I over did the Methyl, man did it start to hurt. I slept on ice every night. It is hurting me right now. My folic is high. I wonder how to bring it down. I will have to google it. Yes I do keep a diary. Not extensive with food etc. Mostly a pain diary and treatment. I should do a better job.
Thank you for this wonderful description. I struggle to describe how I feel awful, so you have done well. I especially love the itchy/twitchy skin is sharp. I know exactly what you mean.
Overall body is wired/on edge and mind is a stupor yet agitated with fireworks in the head.
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Confused by B12 deficiency symptoms 
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