hello all,
I am my 4th week of daily 9 days now EOD of meth b12 injections and doing all my cofactors , trying them all. The potassium has helped with episodes of panic and anxiety and I am also trying the iron and folate as well at different times, I was wondering does this stay like this or about how long does this demand last? thank you for your help.
Please do not supplement potassium unless it is on prescription. Do not supplement iron in more than multivitamin amounts unless you're deficient. In general, co-factors ≅ food.
You bodys demand for potassium will last for as long as you are still alive. If you are asking about an increased demand for potassium , that is only in the case of correcting anemia and is short-lived (few days or less after having the first B12 injection which corrects anemia). If you were not anemic there is no increased potassium demand.
hello Technoid,
thank you for your reply, I drink the electrolytes but a few sips helps me alot though, I know it's so hot here in the desert and sweat a lot so I replace them like that. I had used the liquid iron a teaspoon a day is 5 mg a day. just because I can't eat too much vegies for the iron because I have a issue with loose stool so I do take the 5 mg per day and I inject methyl b12 every other day for now and my Dr won't do my blood work until July so I figured the 5 mg is still ok. I hope soon this will all calm down and balance out. but thank you for your support I sure do need it.
When your stomach heals up a bit and is better able to tolerate vegetables (and maybe even fungi too!?) this might help with some ideas on iron-rich plant foods.
hello Technoid,
so I read your bio and wow that is horrible of the misdiagnosis. but you made a complete recovery I'm so happy for you! I hope I get there as well. I live reading the stories of everyone that has recovered so well. It gives me hope that this will all be over. if I may ask did you ever suffer with anxiety from the deficiency? I never did until I became deficient. I don't have it always now but when it flares up it's so awful, it has gotten way better though and the nerve pain as well as long as I keep taking the methyl b12. well thank you again.
Rosina
Thanks! Funnily enough, not during the deficiency, but a lot more when I started to get treated. I was already aware of the implications of an untreated deficiency, which if anything made me even more worried.
Same here Technoid, and discovering one has a lifelong serious deficiency that no-one seems to understand or acknowledge definitely adds to the anxiety! But with regular injections things have improved. I also find it helps to be able to tell myself it's not really ME, it's my deficiency... 🤷🏼♀️
hello Technoid,
I was wondering what kind of b12 did you use when you were recovering, I know everyone s bodies are different, I was curious about what are your thoughts on cyano and methlyl b12, I've tried them both and see advantages of both of them. and am in about 5 weeks of injections EOD. and I take sublinguals as well I found out that the symptoms are very strong on the days I don't inject and had to start taking oral on those days or my neuro symptoms come back strong. thank you all for your comments they all help.
At first I used methylcobalamin tablets because thats what I had, although they were low dose (250mcg). Popping them like candy every 45 mins 🤪 I graduated to 1mg (tried various different forms)but then quickly moved onto injections twice weekly (hydroxocobalamin) to recover more quickly. In Europe+UK Hydroxocobalamin is standard for injections, while Cyanocobalamin is standard for injections in the US.
I phased down my twice weekly after 5 months to monthly injections then moved to oral maintenance doses after a year. I take a maintenance supplement that has an equal amount of all three naturally occurring human-viable B12 forms (methyl, hydroxo and adenosyl). I take 100mcg in the morning but for completeness and peace of mind I always mix 10mcg into any meal. This is based on the highest daily maximum B12 intake in the general population of 30mcg per day. Most people eating an omnivorous diet get by on a lot less but I want to have a very comfortable safety margin to play in. For someone with working intrinsic factor, 6-8mcg distributed over a couple of meals would seem to be adequate.
I never really noticed any difference in oral forms, sublingual or not, they all did "something" but injections were a much bigger difference initially. Not having PA, once I had all my B12 stores fully stocked again, injections were no longer doing anything anymore so I felt ok to move back on tablets and no issues have arisen since.
hello Technoid,
I have another question if I may ask, how long were you deficient that you know of, and during the 2 injections a week were they enough to where you had minimal symptoms of neuro going on daily, I'm hanging on to EOD injections and trying to keep the symptoms from being over whelming this is my 5th week begining injections, although I was on oral before that for about 6 months but it was not very much per day cause I couldn't handle anything more.
Good question, I guess it depends what counts as deficient. I had neurological symptoms for around 2 years before treatment but its likely that for at least 3 years before that I was underdosing B12 which was getting me closer and closer to full blown deficiency. What pushed me over the edge into the most serious deficiency problems was (ironically enough), going to a doctor and getting my B12 tested, that was where my problems really started 🤣 I wish I was joking but I'm deadly serious, I got medical/nutrition advice in that session regarding how much B12 to take, that if I had continued to follow it, would have left me permanently disabled. Thanks Doc!
When I started replacing B12, in no way did things get better initially, in fact they got a lot worse and new symptoms appeared. After my very first injection I could barely walk, a 5 minute walk to the shop instead took 15 minutes of shuffling, it was crazy.
My symptoms in the first few months of treatment were worse (a lot worse) than anything I experienced over the actual deficiency period. When your nerves are not working properly, they don't even accurately convey how much damage has happened/is happening. Once you get enough B12 and supporting nutrients your body starts giving you a much clearer picture, which in my case meant sometimes excruciating nerve pain in areas with the heaviest damage. I was extremely stressed/anxious and feared the worst. You name it, I was worried about it happening to me as doctors could not explain or understand it. They mostly decided it was all in my head. I'm not sure how you can imagine pain so severe that you cannot use a phone or keyboard but hey.
It took several weeks/months for clear improvements to happen.
If you've been deficient a long time, its probably going to be a very rough time to get out the other side but there isnt really any other option to get your life back. Sometimes I thought it was intolerable and I would not make it, but I did, as did everyone here, some with a lot more advanced deficiency than me. The sooner the better though. Healing neurological damage is a very very slow process so I wouldn't expect an immediate turnaround if you had symptoms for a very long time. You have to be very patient with it and just keep going with getting as much B12 as you need.
good morning Technoid,
I'm sorry it was so horrible but I'm so thankful for you to be able to share this with us so we know there is hope to get finally healed and not to give up. thank you for being so strong. this is very inspirational to me. I had symptoms for about 6 1/2 years and Dr.'s couldn't find it. I thought I was dying from dementia at the end. I even prepared all my finances for the kids and got our plots paid for when we pass away. I thought for sure I would not be able to make my mind get any better. but then when I was brought Holy Communion in bed everyday the retired Dr. mentioned some things to me and I googled them and everything was brought to life. I looked at my last blood work and behold it was 275 and may have been lower before that. so thats when it all began 7 months ago. yes I had know idea either what I was in for and I was led to this PAS. Thank God. well I as well hope to be able to help others as I'm so beyond greatfull for your journey. God Bless you
Sorry to hear you were untreated for 6 +1/2 years. The medical system has failed a lot of us here. At least now you are on track and moving in the right direction.
thank you Technoid, so I've never heard of a suplement having all three forms of the b12, so can you let me know where you get that, that is awsome that it is available. thank you again for your support.
I use a lower dose but this is the 500mcg version:
good afternoon Technoid,
I was wondering when you went to two injections a week did you need to take any b12 supplements until your next injections, I am finding out I have to take them thoughout the day to get to the next injection for EOD. tomarrow is my next injection and I had tried some folinic acid and it threw my bowels off and head all morning so I've been in bed a lot today drinking pedialyte and my other cofactors eating bananas and crackers mostly
I tried tablets between injections (actually I was advised not to but decided it was worth a try) but the tablets didn't have any noticeable effect( I even tried 20k mcg at one point) which I think is not surprising given the amount of B12 delivered in an injection versus an oral dose. It may be quite different for you because
(a) You have PA
and
(b) You have been untreated for over 6 years
If the tablets make a difference in between, no reason not to use them. Quite a few people need to inject daily so if you find that works better for you I wouldn't be afraid to use it. As you know, there is no risk of toxicity. One thing that is known about B12 injections is that one treatment frequency does not suit everyone and there is quite a disparity in treatment frequencies.
From a physiological perspective it is not understood why these kind of frequencies would be required. I think eventually we will see research on this but it might be some time. We know that the "recycling" of B12 is broken with PA but that only adds 5mcg to the daily requirement. I have been trying to find more information on B12 mobilisation from the liver but have not found great information on that yet (one of my metabolism books says it is "not well understood"). If mobilisation from liver stores was "broken" that would go some distance to explaining a much higher requirement as the B12 storage could not be used. A significant amount of B12 is also stored in muscle.
I like bananas and crackers but you cant live on them 😁 Once your gut starts to improve, definitely work on diversifying and improving your diet quality. Hopefully you are already taking a good multivitamin as you will definitely be deficient in multiple nutrients if you are only on bananas and crackers. I eat a banana every day in my smoothie but only fruitarians try to live mostly on bananas (and they usually die of malnutrition unless they give it up 😅).
You can find some helpful diet and nutrition resources in my profile (I am a postgraduate student in nutrition).
hello Technoid,
and thank you for all the information. I will check out the b12 suppliment you have. I had a test today this am for intrinsict factor, I would like to know if I have the ability to absorb or not. I'll know maybe by Friday hopefully from Lab corp.
Low blood sugar = anxiety like symptoms (jitters). When you correct your anemia you have more RBC's to carry glucose which can lower your blood glucose. You might want to explore getting a CGM (eg Freestyle Libre) to track this. My A1C dropped when I started B12 loading doses and my "new onset" anxiety was in fact non-severe yet tangible hypoglycemia. When you feel anxiety try a sip of juice - not too much - a sip or 2 every 15 minutes until jitters are gone (hopefully). See if that helps. Yet another clue you have anemia? An unusually elevated A1C despite a diet and exercise routine that should cause it to drop and/or remain low. And yes, when my doctor told me to eat less and exercise more based on my elevated A1C - before my B12/PA diagnosis - my response? "Eat nothing? Run a marathon each day?" Doctors never believe you when you tell them you are behaving and I was. A1C pre-B12 injections = 6.0%. Post = 5.5%. No change to diet or exercise. I use a Freestyle Libre now to track when I need a B12 injection. When glucose goes up for no reason = B12 injection.
thank you all, very informative and wow I love how you all tackled your deficiency, I will use all this information.
Technoid's advice is very sound. Don't supplement potassium except under medical supervision. Don't take Iron supplements either, unless you have regular checks and are under supervision. Iron is very toxic in excess, and excess isn't very much. A normally healthy human doesn't need iron supplements.
Iron deficiency is a symptom of something else going on, and that needs investigation.
Treatment without investigation is 'papering over the cracks'.
The only way you lose iron is through blood loss. Normal blood breakdown at 100-115 days sees all the iron recycled; most of the rest, the proteins, too.
Only the Porphyrins from Haem are scrapped.
A 'normal' diet will usually suffice.
hello All,
thank you for your advise I trust, yes I do get in my diet spinach everyday and a few other vegies but I have to watch it or I'll loose them all in stoole, and my stomach is getting stronger with the b12 injection now, I can tell. oh also I do eat the fortified cereal "total" that does have iron as well so your right I do not want another problem starting up. this deficiency is enough thank you for your support.
Cereal fortified with iron is a very poor source of utilisable iron, as it's bound in the form of phytates. Likewise, if you drink tea at the same time as your iron supplementation, then the tannins in the tea are likely to bind the iron as well. It's all complicated, isn't it?
Good luck.
good morning flipperTD,
wow I did not know that. but thank you now I know I probably can't count on that iron. yes all these things how our bodies work can get pretty complicated especially when you trying to make a come back from a deficiency. thank you again.
Spinach is also not a great iron source as most of the iron will bind to oxalates and is thus unavailable. It looks good on paper but it's not a high quality iron source, the video above goes into some better options. Nothing wrong with eating spinach now and then, just don't rely on it for iron and cook it properly (a 4 minute steam should do it) to reduce oxalate content.
If you have a constant requirement for iron supplementation it's a symptom of something else, and you need to start with a doctor, and take it from there.
Good luck. We're here to try and help.
How long will this last for? 
The Need for Better Antibody Tests
Best symptom list for GP's to treat 
Please consider signing this petition for better funding and understanding of thyroid conditions. 🙏
How reliable is the serum ferritin test?
