Hello all you smart wonderful people, I can't tell you what a relief it is to have this place to come. One can feel very alone in this. So, jade_s thought I should start a thread.
Some of you may remember, I accidentally took 27 days of methyl in 5 days. I did not feel too great for about 10 days. I usually SC inject cyano daily. But ran out so I used the methyl powder I had and added 10ml of saline and proceeded to use as much methyl as I did cyano. It turned out to be 5 times what I needed. I had insomnia very badly, I literally was sleeping 2 hours a night for 10 days. I had a terrific headache and I felt rather jittery. But that was about it for the adverse reaction to the mega dose.
Usually, by noon on cyano, I would be brain tired. My left foot was still so painful, walking was difficult. I had zero energy. But I was so much better than I was 5 months ago when first diagnosed, I was happy to be as good as I was. I was trying to be patient and give it more time. I questioned if I needed more cyano but stuck to one ED.
However, after that mega dose of Methyl, I swear my symptoms were vastly better. The pain in my left foot was only a pin prick at this point so I considered it 90% gone. It was excruciating before. It was the one symptom holding me back the most. The other was that my mind seemed very clear headed. I was back to being sharp and present. And the over-all body ache was just so much better. I was able to go out and take pics and I even went on a 12 hour trip with a friend. She drove thank goodness. We went to the Mississippi river to shoot the fall colors. It was wonderful. At about 10 Pm after being active since 5:30 in the morning, I was only just beginning to crash. But anyone would have even without PA after such an active day.
That was a week ago. I even found myself skipping two days of cyano because I felt great. I thought to myself, Wow, is this because of the mega dose? But now my feet are starting to tingle and I can feel that painful spot on my left foot returning. also, I can tell my brain is fading again. I am still SI ED with Cyano, but something is different. I feel like it isn't doing what the methyl did for me.
So my question is, could we all just need mega doses of B12? Or was it simply the difference in methyl v cyano?
Now, My body aches, and my brain is distant, and my feet are starting to hurt/burn/tingle. My back is very sore from head to tail and my legs are weak. I am finding myself wishing I had Methyl. Even though I took too much and it made me feel terrible temporarily, the positive effects were clear to me once it started to wear off a bit. The good effects lasted over a week.
What are your thoughts? Pleased feel free to hijack this thread as I'm sure it will lead to personal stories and responses, so please feel free.
Thanks everyone
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EllaNore
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Individuals do respond differently to different forms of B12. No obvious reasons for this. Some really don't get on with methyl, or find it does nothing for them. Personally I find that it helps with some nerve issues but I also find that adenosyl really helps with urge incontinence in ways that other forms don't.
good morning Gambit62. I have never heard of adenosyl. I Googled it but still not sure what is. I have major incontinence. It gets worse when I'm tired and crashing. When I first started I could hardly even control it. It's much better now but still very much an irritating inconvenience. What leads one to take it?
there are two forms of B12 used in processes that go on in your cells. One is methylcobolamin - the other is adenosylcobolamin. Whilst it shouldn't actually make any difference in theory which form you take because your cells make methyl or adenosyl depending on what processes need to run from a form of B12 that has been stripped of the attachments, it may be that some of some people definitely find different forms do different things for them, and it may be the additional adeno- or methyl- component that is actually the reason why people notice differences - but that's speculation on my part. adenosyl is the least stable form of available B12s - I find I'm okay with high dose oral so use tablets - it's not easy to source in other forms.
Ok thank you Gambit62. I understand now. I think for now I will try the hydroxy when I get it and see if that helps me first. If not then maybe I will look into supplementing adenosyl. One thing at a time. I think. that way I know what is doing what. So with PA we can absorb adenosyl?
For information, Metabolics make an adenosyl liquid if it might suit anyone better. I reacted to it as it is not grain free in production, unlike their methyl liquid. Cheers
Thanks for raising some interesting points. I don't inject/have injections and use oral/sublingual. I did find some benefit from cyano, but not as much as from methyl. (And even more when I added some methylfolate). Having read that we need adenosyl as well as methyl, I started to take both a combined of those two, and some hydroxo, to hopefully convert. I doubled my intake when I had covid in April and have recently increased some more although still awaiting results of MMA and homocysteine. Could you maybe try a sublingual methyl alongside your cyano SI if that also helps you? Very reassuring to hear that your foot pain reduced so much as that is really a problem now in both feet. I've just found that my B6 is low in range so have increased that too. Best wishes
thank you bookish. May I ask do you have pernicious anemia or are you a vegetarian? I'm just wondering because I see you're having the MMA test and the homocysteine, and I'm just wondering why you don't inject or get injections? Being that people with PA can't absorb B12. I was wondering how oral supplements are working for you. It sounds like you might think that you have PA and are getting tested for it? I have never heard of the adenosol before. I had better read more about that. I tried taking folate once but my folate isn't low on my blood tests and when I take even one pill I feel terrible.
I have an appointment with the hematologist on the 26th of October. This is a new doctor, so I think I'll take some notes to ask them about this. I very much clearly felt better on methyl after my mega dose wore off a bit. I was feeling almost like I didn't have PA. Which made me think that wow maybe my body needed a huge mega dose like that. And now that it wore off I am quickly regressing to what I was before I Mega dosed. I don't feel terrible but there was a definite difference. Especially in my foot. Now that I see how good I could possibly feel, it makes me want to feel like that all the time and I don't know how to maintain that or achieve that except for by mega dosing.
I was finally able to order some hydroxycobalamine from Germany and I'm very excited to try that when it gets here. The cyano was working for me but when I took that methyl the results were very positive and very different except at the beginning when I didn't feel so good because I took so much. After about 10 days of feeling bad I finally started to feel actually really good. So somewhere in between what I do with cyano and what happened with the methyl there was a very positive reaction in my body. And I'm craving that again.
I took a second cyano injection last night because my body was so sore and so tired, and I woke up feeling better this morning. Truly believe my body is telling me I need more B12 or a better quality B12. The cyano is very thin consistency compared to methyl.
I do have a sublingual methyl but I can't tell if it works or not. I have drops and tablets.
good luck on your tests and thanks so much for your comment.
Hi, I am not vegetarian although I struggle to digest meat nowadays so no longer eat much of it. I do not have PA so far as I am aware but have not been fully tested. It looks as if at the moment I have a functional deficiency of some kind, likely genetic, and am being investigated for that, hence the recent tests. My grandmother, great grandmother (and two siblings) and their mother all ended up with PA so Dad and I have supplemented for years as we were symptomatic but no-one would take any notice as our serum was 'normal'. Neither of us yet have any diagnosis.
Cyanocobalamin and hydroxocobalamin convert to methylcobalamin and adenosylcobalamin and they work in slightly different ways, with the body needing both as I understand it. This may not be the best source of information but it is an easy read introduction wellnessresources.com/news/.... I have the COMT enzyme SNP which is mentioned as well as a common (minor) methylation SNP so am trying to take a little less methyl and a little more adenosyl and hydroxo.
My folate wasn't low either, in fact was quite high and it decreased when I started to use a small amount of methylfolate. Maybe it was too much methyl for you, or too much of any sort of folate/folic. We are all different and these have complicated interactions which aren't yet fully understood, like B12 metabolism.
I'm glad you have some hydroxo on the way and an appointment soon, so that you can say how you reacted. It sounds as if you need more, just in a slightly more controlled dose! Keep us posted and best of luck.
Wow, well your family history should be enough to test you. That is a hi rate of PA in the family.
Your problem digesting meat is also something I said to my gastro, she said that everyone says that. It is gut related as is PA so that is just another indicator that you have an issue. she agreed it could be SIBO and I have my test on Nov 16th. So maybe that is something you could test for? It sure seems like you have PA just by symptoms and most definitely family history. When I said my grandmother died of stomach cancer, that is when they ordered all my tests. My IFAB test was Positive. so then they ran other tests.
I wonder if you were to stop supplementing for a week or so before testing, since you and your dad take B12, if that would help with your tests being more accurate and getting you the results you need. Does everyone in your family inject B12 who have PA? I sure hope so.
Ok so reading about COMT and SNP, I think I may have a bit of that. I'm so sorry you have that. I can see how that would be VERY difficult. I used to be able to handle stress fairly well, but now all sorts of minor stresses REALLY stress me out. It is a major issue. I was so happy to have PA, because I thought that answered 95% of my life long issues. But now I am wondering about all the other things I have never heard of like COMT. Does PA cause this? It sure seems like it is in the realm of PA stuff. Like POTS etc. My brain is the thing that gets it the worst. I was under an immense amount of stress for 10 years, I lost everything. Home in the sierras, husband to cancer, business, family, everything, and had to move across country to start my life over, all alone. It was a very dark time and I thought that maybe caused my inability to handle any stress, no matter how small. I just don't know anymore. Is it ALL PA? My brain gets very overwhelmed very easily. It is much better now that I have B12, but when I crash that is my first symptom. Brain fatigue and body fatigue.
Well, I hope someone else chimes in with some answers for you and me.
You say your Serum was normal, but what about the functioning B12 levels? And perhaps your folate was hiding your B12 levels? It can do that from what I have read. It could be that because you are treating yourself like you have PA, that your tests are not accurate? I am just guessing. But withholding supplements before any tests might help.
I have a book by a Dr Chandy which says (he believes, from his experience) that if you have an underlying B12 deficiency and it gets treated at that point, you should not (barring those who get it as a result of surgery etc) develop PA. That, in effect, PA is a late stage diagnosis (due to the changes in DNA methylation making us more susceptible to autoimmunity generally). I think the common SNPs like MTHFR and COMT to some extent are just some of the genetic predispositions/vulnerabilities which if expressed, make this more likely. And stress, especially such a heap of it like you sadly had to deal with, both makes those epigenetic changes more likely and if already expressed, reduces your B vitamins particularly. All of us in my family have either got considerably worse or ended up with PA following considerable stress. We have no one now with PA (yet), and all three known generations got it late in life.
When I started methylfolate and got such a positive response, I actually came off all of the supplements in the hope that my then consultant would test me properly but he wouldn't and I felt really unwell so did what I could test for myself and then went back on them, and things improved again. So I am not keen to come back off again. My latest consultants have said it may be necessary but it may not, so we will wait and see. It would take more than a week, unfortunately. Magnesium helps me a lot, as COMT function is magnesium-dependent.
Inability to digest anything problematic goes hand in hand with low stomach acid, which is due to poor parietal cell function. It may be PA, but also happens with thyroiditis, and things like Crohn's and coeliac. Function decreases with age irrespective of other conditions. I use lemon or lime juice and apple cider vinegar and avoid things that are especially difficult.
wow. This is a vicious cycle isn't it. It's very difficult to know if the egg came first or the chicken. This is a very complicated and confusing condition. I can see why doctors don't understand it very well. But if we can learn they can too. At least enough to help us. I have so much to learn and all of this is very interesting and I read everything. I don't retain so well , but my brain is a sponge and I want to know everything I can about it. it's hard for me to absorb and retain it all. I made a note to tell my hematologist about my inability to deal with even minor stress or irritations. I get very frustrated and flustered over stupid simple things. Thank you for all of this information this is also very helpful. I hope it helps others and I hope you find your answers too
Just the fact that when you went off the supplements and you got worse and went back on them and got better, says something. But also, the fact that the oral supplements are helping, also says something. It means you are absorbing something. doesn't it? You have a perplexing case for sure. I hope they get to the bottom of everything for you. 🦋
I read something to that effect about PA being late stage B12 D. It did make me think if it is caught early, the advanced symptoms like gut issues and neurological issues would not happen. It also made me think that if one has PA, they have been sick for decades. And I know I was.
Thank you, and for you too. I know even with PA, some absorb a little orally (passively), and I do take liquids and sublinguals as well as tablets (and a lot of it!!). And I really don't expect to have PA, but I do have some sort of B12 D. There are lots of other reasons after all. Don't be hard on yourself, just take your time and you will make steady improvement. It has been like peeling back the layers of an onion, I have been trying to work out what was not quite right for years now and along the way have been misdiagnosed so not correctly medicated plus no-one looked for a B12D as they didn't think the family thing was as important as they seem to now. Keep at it x
You absolutely have some sort of B12D!!! Have you ever thought about buying b12 and self injecting? Maybe you could do that if they can't find what is wrong. I can not figure out why they can't find the answer for you. When clearly all the signs are there. Something must be hiding it? But what? It's all so complex.
I have thought about it and will again perhaps if the current team can't find anything that moves things forward. But I am hypersensitive to meds, foods, chemicals in air, on skin etc etc so very cautious about what I use. Partly it would have been obscured by taking B12, partly by very low iron, but mostly that those with genetic cobalamin metabolism issues have normal serum. They do at least now think there may be something wrong, we just haven't quite pinned down where it is along this complex set of functions. A lot of this is quite new research and doctors aren't well informed about B12 (and the interactions with folate - and I suspect that my actual problem is more with folate).
I'm glad they at least know something is wrong. So that's good. I have had very strange reactions to medications in the past myself point of being very scared to take anything. I had kidney failure from ibuprofen, and I had anaphylaxis to antibiotics which I never had before. And other very strange reactions to antidepressants that I was given to help with nerve issues in my legs. Like gabapentin and Cymbalta. Well I hope to hear good news when you have your doctor's appointment. Good luck thanks for all your help
I just wanted to add to the tablets discussion bookish. I took high dose b12 tablets for several decades... can't say if it helped or not but i'm pretty sure I was absorbing only very minute amounts, but labs were still 'normal'.. I didn't know anything about PA then. I started SI when literally overnight I developed severe neuro symptoms. IFAB negative to this day.
My 2 relatives were both taking B12 tablets & swore up & down that they worked but were quite aware of what I went through. Finally a few years ago, they both realized tablets were having no effect. They're both better now that they've started to SI. One tested IFAB positive, the other is still negative. Maybe in another few decades I will test positive too, lol. All of our labs have always been mostly 'normal' otherwise.
Moral of the story, two in fact: One, you can be IFAB negative, have perfect labs, and still be functionally deficient. Two, if tablets work for you now, there's no guarantee they will in the future. Pay attention to symptoms and don't wait too long. Once nerve damage starts, it takes time to repair, and the longer you wait, the longer it'll take - precious time you could instead use to live your life fully. Just my take on it.
Btw I do believe stress is known to be a trigger of autoimmune disease.
Hi, I can well believe that stress triggers autoimmunity. We just need that three legged stool and if you can kick away one of the legs you can reduce the risk considerably. Unfortunately there is not much agreement on what the three risk 'legs' are, so I guess that is where our individual variations/vulnerabilities come in. My neuro said that gluten probably plays a part for me, as I had such an obvious benefit from quitting, and EBV wiped me out for a couple of years which is another prime candidate, plus a whole heap of stress, added to my genetic/epigenetics and bingo.
As to the tablets, I am certain that you are right. I am sure that I am not getting enough B12 and that my folate cycle has been slightly poor my whole life - explains a lot - but as to begin with I didn't know enough about the family history to push it and my serum presumably seemed ok if they ever tested it along the way, and as I found out more about the history, and that B12 metabolism is still poorly understood, and that it is considerably affected by the genetics, and that they keep finding new places and SNPs which may contribute to metabolism faults, I have been roundly dismissed whenever I have tried to suggest better testing. That is until I developed more neuropathy and ended up with a good neurologist who referred me to another good neurologist and a Small Fibre diagnosis and now Adult Inherited Metabolic Diseases. I am more concerned for Dad who has also been effectively told to get lost for years and is now in a much worse state than he should be, but can't remember to take the extra supplements. He is much better with Better You Boost and has been using that for about 10 years, but it is clearly no longer enough. He won't bother GP again, can't remember enough to explain, and gets cross when we try to encourage him to let us go with him. So I am hoping hard that the current tests will help him too, as they may give us some extra leverage with a reluctant GP, plus helping the wider family if interested.
I did some basic genetic testing of my own in 2019 which gave me some pointers but seems likely that they will be done properly (for MTHFR and cobalamin at least) but at next appointment in c. 4 months. I don't know the Invitae panel - what did they test? Is it specifically B12/PA? Cheers
Here is the Invitae panel, it tests basically almost any gene current known to be involved in b12 and folate metabolism, currently they have 31 in the panel. invitae.com/en/providers/te... "Methylmalonic Acidemia and Homocystinuria Panel, Test code: 06141" . Another company is GeneDx but Invitae's has many more genes included.
I'm so sorry to hear about your father. It's worse when this happens to people who can't advocate for themselves. Is he getting IFAB test as well.
Sending you best wishes! B12 is very complicated and I agree, very poorly understood.
Thanks for that. Presumably it wasn't cheap! I'll bear it in mind for later if testing doesn't get done. Dad has never had any testing other than serum (and active, which we did as part of a Medichecks panel to look at his thyroid) and won't let me sort anything privately at the moment. He did a fingerprick homocysteine years ago, but that test is no longer offered and I suspect wasn't terribly accurate. It was a bit high, but not high enough to trigger interest. Thanks for the good wishes, and the same to you!
US company, so $250 last year, and a doctor has to order it. Plus I was in the US at the time so it was easier to send the sample, but I do think they work with overseas customers.
Oh dear, I'm sorry to hear that about your father. Yes, if your tests came back positive maybe you could speak directly to his GP. You have plenty of family history now, why don't they just ake it seriously. Tough situation.
Cheers. My genetic one went to US too. I'm hoping these NHS ones will give me something to help convince Dad and that he then will let us all talk to GP together, as GP won't talk to us unless he gives permission - we tried!! I was pondering on the Spire Pernicious Anaemia test but that is £570, which he could pay but I can't. Ho hum....
Sadly I think quite a lot of people have what GPs would consider ample B12 in serum but still have one of any of the B12D issues. Even the tiny bit of B12 that is in most multivitamins is enough to raise blood levels for many into the 'acceptable' level, irrespective of cellular levels so it won't fix any kind of deficiency, just mask it further.
The more I read, here and elsewhere, the more it becomes clear that you can have a cellular deficiency at any serum level - low, medium or high. Serum testing finds some, active B12 testing finds some more, IF ab and GPC ab or homocysteine or MMA find more again, but we have no absolute definitive gold standard testing as all of those can be misleading.....and the genetics may find more again (I'm hoping so!) but that too is not perfectly established with more involved genes still being found/linked. But it is really concerning how little understood that is, even amongst consultants. My two neuros are both very good, young and scarily bright but one clearly didn't think B12 could be involved (and said 'but you are taking B12 supplements') and the other said I was well-informed and understood it better than he did. Which I shouldn't.......
Exactly. The more I learn about it the more I realise I will never have a sensible discussion with any health professional. It’s a pity blood tests are used at all. They were on the right track back in the 1950’s with the Schilling absorption test. Even though genetic metabolism issues weren’t on the radar at that time.
I’m also concerned that if other family members have b12 issues they won’t be treated properly or have the time/incentive to research it all. In the 10 years since I stopped working I think I’ve probably read enough research articles to write a dissertation on the subject.
Maybe we should go back to raw liver! I wonder if anyone still uses it as a treatment or can get liver which they would be happy enough with to eat raw....If the Metabolic lot are helpful, I'll let you know, they may be worth a try if you haven't already. Best wishes
I would just like to know why such high levels of unmetabolised b12 can build up in the blood and why the body clears it so slowly. It hardly helps when trying to plead deficiency.
The first thing I understood about treatment is that you can’t take too much as the body excretes what you don’t need/use, but this clearly isn’t always the case.
I wonder the same thing. If our levels are >2000 then why isn't all that b12 helping us? Why aren't our bodies using all of it? If it was all being used, I don't think we would still feel this bad. How much of a 1ml ampoule are we actually benefiting from?
I'd written a reply and just lost the lot - aargh! My basic thought was that B12 which we take or inject may only remain active for as little as 8 hours in some, in most 24-48 hours which is why injections for those with neuro symptoms should be done every two days until symptoms stop improving, and why it shouldn't be re-tested (with a view to stopping it if high) as it will show high but that doesn't mean that it is actually being used cellularly. If deficient, we need it, and may not have (or ever have had) the same body stores as those without deficiencies. Depends where the 'fault' is.
Me too and I don't know I'm afraid. Do we know that it isn't metabolised - is it just inactive - and how fast is it usually cleared. I understood that serum could remain high for at least a few months even if we stopped injections, but as I said to EllaNore, that doesn't mean we don't need more 'fresh' supply, as that inactive portion isn't always easy to recycle - it should be 're-activated' but in some with genetic cobalamin deficiencies that process is poor, so can vary between about 10% and 90% efficiency from what I've read. Also the processes involved are complex and we do need co-factors - are you taking folic or folate, and what sort/how much, also B6 and other B vits play a part. For myself, I'd taken a moderate amount of B12 for years, plenty of dietary folate and a small amount of folic in a multi. I made improvements with more and different types of B12, but still made a big jump of improvement with methylfolate. This bit was quite interesting misciwriters.com/2020/06/21... Cheers
I am going to try and ask the hematologist when I see them, why this is? why if we inject, isn't the B12 benefiting us? If we have such high levels why do I have cognitive and neurological issues by the afternoon? And why this excruciating headache for three weeks now? I will see if I can get that answered. I doubt they will actually know, but I plan on asking a lot of questions. If they give me the time to do that. Some are not approachable at all. Also, why we can't have hydroxy here in the US? Also, why can't we just have the jabs we need like diabetics are allowed? I want to try and just talk to them logically and like two scientists trying to figure it out. But that usually doesn't play out that way when I get there.
I have taken folic acid twice now and both times I felt terrible. My folate isn't low for some reason. I took magnesium too (not on the same day) and it made me feel very jittery too. I don't know why. But I plan on asking the hematologist. I am afraid to take anything right now until I have tests in a couple days. From what everyone says, I should take folic acid and magnesium but I don't feel good when I do.
Not everyone needs folic acid, and some people can't tolerate large doses. If it doesn't sit well with you, no reason to force it. If levels drop, or some symptoms plateau, you could always try folinic acid or methylfolate.
For magnesium you might ask for the "RBC magnesium" test, it's supposed to be a better indicator of magnesium levels. If it's not low, i woukd skip that too. If it is, you might try different formulations. Could be the fillers.
I love your attitude, all excellent questions!! If you receive any interesting answers - you never know! - let us know Good luck with the appointment! And I'm really sorry about the headache, 3 weeks is a long time, I hope it goes away soon.
Thank you so much Jade_s. This is more info I need to ask them. I don't know what the difference is from folate and methylfolate. I've definitely going to Google that and find out. This is where my brain gets tired and I get a little overwhelmed with what I need to know.
I'm going to ask them to run all these tests tomorrow to find out where I sit with my folate my magnesium my thyroid, etc. I don't want to get my hopes up because I think I'm expecting too much from this new hematologist. Thank you very much for clarifying that maybe I just don't need folic acid and magnesium. I need something though. Hahaha thank you all for helping me get to the bottom of this. I'm sure it will help others as well
I don't the scientific differences but just like there are various forms of b12 that convert to the other eg cyano to hydroxo to methyl, folic acid is similar in its conversion. Some people say methyl is better because it doesn't have to go through the conversion process. I dunno, there is a lot of misinformation out there.
I still stand by my claim that the only way to know what form and dose works best is through controlled trial & error: make 1 change and only 1 change, hold for some time, keep a daily symptomd log, and repeat, making sure to change only 1 thing at a time. Applies to b12, folic acid, thyroid, anything really. Time consuming but effective.
Good idea and I hope they can tell you. Those that inject do get a benefit, significantly more is useable than in those taking oral or sublingual, but that doesn't mean that it all stays useable if you aren't able to recirculate it. And a % of course passes either straight through, or is quickly metabolised or stored.
As jade says, you may not need more folate. I doubt that you need more folic acid. What sort you take can make a significant difference to some of us, but not all, and certainly did for me. As for magnesium, I too was jittery and had a (brief) headache and dizzyness when I first tried a magnesium bath (Epsom salts in this case), but when I started using less salts and just in a footbath of warm (rather than hot) water, it made me feel much better. I use a magnesium oil spray on the skin now for convenience and that suits me fine. Once you've had your tests, just start one thing at a time and do it very slowly, if you want to try again. Cheers
Thank you bookish. It occurs to me that I don't know the difference between folic acid and folate. I didn't even know there were different types of folate and magnesium and folic acid and I don't know what they do or what the difference is. I definitely need to read more on all that. You guys are all so smart, I don't know anything about that stuff. I wish my brain worked better. It's frustrating to me that I'm not a doctor so I can figure this out!!! It frustrates me not to be able to help myself. I'm glad that I can at least inject B12. I wouldn't mind taking a class to learn more. I like to read, but it frustrating as I need to read things several times these days. I used to be a sponge when it came to learning, just not so retainable these days. It's frustrating! You all learned, I'm sure I will catch on eventually. Thanks so much for all your helpful information. Lots to ask them tomorrow. 🤯 I swear this imoji is how my brain feels. Lolol
My brain was so fried 6 years ago, I literally could not add 3+5, had to count on my fingers. And sometimes I had to think real hard - if I saw a number written down - how many things did it represent? 🤯 indeed 😂
I was really worried my brain would never heal. I'm happy to say it has, albeit slowly, and not quite 100% either, though very slowly I do still see some improvements.
Thank you very much for the validation!! I just read what you wrote to low blow, and I swear you seem to have very similar symptoms to mine. Although I guess we all do. It is a comfort to know that you got better. I guess I just need to give it more time and be more patient and quit trying to be so controlling. I just went so long without knowing that I just wish I had it in my head to fix this. Just wish
I should put all my symptoms in my profile. They were kinda crazy. Like the blinding "sun" that covered my vision for months. Eep! Ok i need to go work now, something I could not do 3 years into SI! Also i hope i'm not scaring you with how slow everything went. Maybe i am an extreme case.
you're not scaring me at all. I need to know this stuff. And I feel that we have very similar situations. I would love to know all of your symptoms. You mentioned the Sun the sun is my enemy. Bright lights are my enemy too much little noise in the background such irritating things that people would think are very minor, are huge to me. I can't even stand to see pin light shining through a crack in my drape. I felt like I was some kind of add or something. I felt like all these little things irritate me so much and what is wrong with me why am I such a b i t c h. But it is this B12 deficiency. I don't know if people realize all the little subtle nuances of things that happened to you because of this. You've helped me tremendously. I don't get scared like that. I want to know the truth. I don't care how scary it is, I just want to know it. That way I can deal with it. I don't need beating around the bush I don't need people to be gentle with me, I need the absolute truth and the pure scary facts. That does not bother me. The more I know the more I can help myself. It's not knowing that scares me. Thank you so much for everything that you tell me. Have a great day at work I'm so glad you're able to go back to work. Have a wonderful day!🫂
Putting your replies first because my brain is already slowing down and I need to see what you've written in real time as I reply, thank you B12D 😜
you're not scaring me at all. I need to know this stuff.
Good good. I go a bit overboard sometimes because even though people told me it would be slow going, I just didn't really.... get it.
And I feel that we have very similar situations. I would love to know all of your symptoms.
On my to do list
You mentioned the Sun the sun is my enemy. Bright lights are my enemy too much little noise in the background such irritating things that people would think are very minor, are huge to me.
Yup, sensory overload! Everything irritated me - light, smell, noise, vibrations, people saying stupid things (haha), getting TAPPED omg that one STILL annoys me I am getting super irritated just typing it LOL.
I felt like all these little things irritate me so much and what is wrong with me why am I such a b i t c h. But it is this B12 deficiency.
100%. My family said I went through a personality change. When I get low b12'y , hubby knows that my reactions are not really me. He says he just waits until the real me comes back. Crazy to think about it like that.
You've helped me tremendously. I don't get scared like that. I want to know the truth. .... The more I know the more I can help myself. It's not knowing that scares me.
Well said and exactly the way I look at things too. It's the not knowing that's the most frustrating! I'm really glad I could help ☺️ It helps me, at least, to know there are others who are in a similar situation. Not that it makes me happy for any of us, but at least we have lots of empathy for each other.
Thank you so much for everything that you tell me. Have a great day at work I'm so glad you're able to go back to work. Have a wonderful day!🫂
So you're welcome!! Thank you, I hope you have a great day as well 🌺
I started working part-time early 2020. At the time, I could barely manage even 50% work. I kind of had to force myself - sick leave had ended in 2018, unemployment was ending, and the only way I managed to pay the bills was thanks to help from my family. You'd think after 4 years of SI I'd have been bouncing on the walls, but sadly, I was just barely able to manage, and it was thanks to covid lockdown that I could actually work from home, otherwise I would never have managed to go to the office 2, 3 days a week. (I'm still working from home). 2 plus years on, I've had some ups and downs, but can more or less manage 50% work plus working on my studies, visiting here, going grocery shopping, keeping the house more-or-less decent. That is big win in my book but it's still not enough LOL. I will be SO happy if and when I can ever go back to full time work. We'll see. Cue "time is on my side" 🎵🎶
You do! You're here! You're learning more than you think, and contributing! It's a complicated subject with many nuances. You're doing great! It just takes time to find works for each of us individually, and then more time for the healing to gain steam... your enemy is time, not your brain ☺️🌟🌺
oh my gosh I need to take the time to answer this but I'm at the dentist. And my phone does not type well for some reason in this forum. So please excuse me for not answering you for a while. The dentist is calling
Like Jade says, I too had huge problems with numbers and if I had to add up at work went full-on 'rabbit in the headlights'. It is still not great, but so much better, and I can think and make a sentence and remember at least some of what I read or at least where I put my notes! It has taken a lot of time and small changes, so be patient and don't be too hard on yourself. This is a massive amount of stuff to get your head around especially when you are feeling bad and have been for ages. Forums are fab and can help so much, even just for a bit of support. We have all learned a bit at a time through necessity, just as you are, and what is great is that the resources are there to help us do it if we want to have some input into getting as well as we can.
There are about 9 types of magnesium and some find they work for different things and one may suit better than another.
Folic is the synthetic supplement/usually prescribed form, folate the dietary intake (leafy greens) and the 'active' supplement form (usually methylfolate), and there is also folinic acid. If you want to get really confused search Wiki for folate. The folate cycle is complex and the relationship with B12 intricate.
Thank you so much bookish. A very nice reply. It IS a lot to unpack and pack in. I will be more reading on folic and magnesium. I'm at dentist right now and I plan on giving them a little bit of knowledge about nitrous oxide, and b12d. Thank you for all your support. It's been big help.
I do take a methyl b complex with 250mcg folate and get as much as I can in my diet. Maybe I should try more folate separately because the complex contains 25mg b6 and I have sometimes stopped it for a month and really noticed a drop in my mood and energy. To the extent that I wonder if my problem isn’t as much to do with folate/other b vitamins as b12. However I recently noticed the b12 in it is both methyl and adeno, so maybe that plays a part too. Still trying to workout the optimum interval between injections.
The article was very interesting, thanks. I just need a phD in biochemistry!
Yes, it might be worth trying a little more folate as a stand alone in that case. More than 25 mg of P5P (PLP) B6 would be ok for most and you should be ok allegedly up to even 100 mg of pyridoxine which is the one more likely to cause neuro problems, but I wouldn't take that myself. I use P5P but have only just increased to approx 10 mg after testing low in range - taking it slow as usual! I use a methyl(tetrahydro)folate liquid and take approx 600 mcg split into three doses as I found that works better for me. Best wishes.
If you read the info about methyl not converting to adeno, please see this reply from Technoid. Methyl *does* convert to adeno, except it might be less efficient in some genetic cobalamin conditions healthunlocked.com/pasoc/po...
Thanks, at least that may mean that some of the heap of methyl I've been taking has been helping (which it seemed to be) but that genetic cobalamin conditions bit is right where I am at, so I'll keep taking (several) extra tablets!! Cheers
Are you getting genetic testing done? Just curious. I did the Invitae panel but everything came back negative there too. I'm still quite stumped as to exactly what kind if b12d i have. I hope you get some answers!!
Why am I sooooo lethargic? I just don't understand. I have injected twice daily for 3 days now. I just want to lay in bed. My legs are weak and my back really hurts between my shoulder blades and my lumbar area. and I am getting more pale by the day. I used to be a dark Italian, now I am very pale. I just don't know why I am feeling so badly after feeling so good last week. I went out last night to play shuffleboard at my friends. I didn't want to go but I did and I had a good time and felt good, but then I crashed. I injected before I went and took two acetaminophen and a tramadol so that is why I felt OK. But after that wore off, I crashed. and I am weepy and feeling sorry for myself. LOL I don't like that. what else could this be? Do I need to run more tests of some kind? Thanks. I know it is Sunday so I hope you are all out enjoying this day. 🦋 Maybe I just need Hydroxy, which is coming.
I pushed it this week and feeling somewhat the same - full of old aches and pains coming back, terrible fatigue and feet are like lead weights. Injection needed tomorrow I think.
Sorry you feel that way too. I guess we pay for one good day with three bad days. Oh well. How often do you inject? Is it hydroxy? I can't wait for mine to get here I'm hoping that it helps. I'm afraid I'm getting my hopes up too high so I better not do that
I'm on once a month injections now, had been getting by on tablets (~ 1100mcg a day + 10mcg extra doses at mealtimes) and at least not disimproving until I pushed the boat out a bit too far this week. Always Hydroxy.
My hydroxy order was cancelled. They don't deliver to the US. I have placed another order with Apotal.de. so we shall see if they will ship to me. Everything is so hard in the US? sheesh.
One possibility: This might be the feeling worse before feeling better effect. I slept for *three days straight* after my 2nd injection, and needed daily naps for months. My moods and everything else were very much up and down. I started getting better, and then had the "bad b12 debacle". After a month of decline, I got back on some good B12, and I went through the whole sleeping thing again, though not as bad as before.
Or because you are feeling better, you do more, which makes you crash again. That's part of the roller coaster of the early days. It's incredibly frustrating and difficult, but we've all been there, and it will get better xxx
Or yes, possibly cyano doesn't work as well for you.
How are folate and iron levels? Might be worth getting those tested if it's been more than 3 months. Also remember, starting or increasing injections can increase the demand for potassium, as new red blood cells get made. Try eating more bananas, avocado, or coconut milk.
It's difficult, but just take it one day at a time. *hugs*
Thanks jade_s. Exactly. I have considered all three of those things. I was thinking that maybe when I felt so good after the methyl incident, that I crashed big time. and now my body is hungry for that methyl? I can't wait to get the hydroxy.
I was also thinking maybe I over did it when I felt good and now I am paying for it. I didn't really do THAT much. Not compared to what I used to do. But Maybe that is it. I just did too much.
I am going to a new hematologist on the 26th and I will ask to get all of those tests, as I am wondering myself. I'm reluctant to get my hopes up that this will be THE doctor. The one that will help me, believe me, and work with me. I am already getting my hopes up and I don't want to do that. But I am making notes according to what people suggest here and will ask them as much as they will let me.
I have upped my bananas, I wish they didn't go bad so fast. I live 20 miles from a store. LOL
i collated all my symptoms chronologically. Longer than I thought it would be 😱
These are symptoms that started & never resolved until after starting SI. All have now resolved except ones with a *. Other symptoms periodically flare up on bad days, like the blind spot, but I still consider them 'resolved'.
Here's a fun game! If you were a specialist that was familiar with PA/B12D, at which symptom would you say "hmmm with all these issues, maybe we should investigate a B12 issue"... Mind you, I was in & out of GP offices since a very young age. My last GP knew most of these. I made great symptoms lists LOL. And yet.
In order of appearance, earliest ones as a teenager.
- Depression, periods of apathy, never at peace, slight paranoia, some sensitivity to environment & sensory input
- Stomach problems e.g. reflux & low stomach acid symptoms
- Itchy nose
- Didn't taste or smell properly (only found this out after SI'ing fixed both)
- * Difficulty working out what people are saying if there is a lot of background noise. Or I hear the words but not be able to make out what they mean. Subtitles are a must when watching tv or movies.
As an adult:
- * Exercise / exertion intolerance
- * Always tired but plugging along (like CFS)
- Choking on own saliva, choking on water and food (I got pneumonia after ones of these episodes!)
- On & off swollen tongue, which affected speech
- Mouth ulcers
- Couldn't maintain upright posture whether standing or sitting. Always leaning on something. Always had to prop head up.
- Felt like I was losing my creativity
- Started making very bad decisions, lots of spur of the moment decisions regarding important life issues. Like executive function was failing.
- Shoulder swipes - running into corners
- Constantly bumping into furniture.
- Dropping plates, cups, bottles, pens, phone, other things, like I just couldn't grip properly
- Progressively more & more exhausted
- * Brain fog
- Feet burning
- Difficulty recognizing faces at work. Forgetting colleague's names.
- Completely blanking mid-sentence during work meetings
- Impatient, bad moods, mood swings, intolerant to many things (people, light, smell, noise, touch)
- Fibromyalgia type pain - sensitive points, bone pain
- Legs felt very heavy
- Smoke small in sinuses, on & off
- Tinnitus but mild & only once in a blue moon
- Off work many times due to multiple burnouts, exhausted to the bone (eg full-blown CFS)
- Other vague symptoms that were likely thyroid related because they resolved with thyroid meds (eg constipation and mixed IBS symptoms, hair loss, etc), while all the rest only resolved with SI.
- Hand tremors
- Bugs crawling sensation in hair at night. Asked both GP & hair dresser to check me for lice, several times. (Hellooooo!! This one is so obviously B12D!! I am SO mad it wasn't caught by this point)
It got progressively worse at this point, but it still took a few years to develop into fullblown numbness.
- * Started swapping words with opposite meanings, hot for cold, up for down
- * Skipping words when typing (email, text, work documents)
- * Started losing my mental sharpness, quick thinking ability
- Flickering vision, like I was watching the world like it was an old movie
- Vision like I was looking through TV static
- Blurry vision
- Blind spot in vision
(Eye doctor couldn't find anything over multiple years even after full eye exam.)
- Muscle pain
- Tingling in fingertips, back, face, worse burning in feet
- Difficulty making it through a work day. Could not combine working fulltime with household chores.
- Started noticing that my arms or legs would go numb very quickly eg leaning on my elbow reading in bed, or sitting on my leg. I was curious but couldn't make any sense of it. As time went on, it took less and less time before numbness set in, until it would take only 1 or 2 minutes for a limb to go totally numb in certain positions.
- Diffulty recovering from illnes (cold, flu)
- Worse mood swings, unable to control mood, some bad outbursts, stress intolerance, no sense of humor
- Extremely sensitive to other people's words; paranoid
- Seeing dark "ghosts" in peripheral vision, nothing there when i turn to look
- * Numb patches on back
- Swaying when going up stairs
- Waking up with arms completely numb
- No longer able to comprehend sentences when I read books or magazines. Only able to read short pieces, and even then would have to re-read sentences multiple times.
- Handwriting looked terrible
- * Lost my ability to photogenically remember where everything in the house was, especially stuff I had put somewhere 'for safe keeping'. (This one still really upsets me).
- * Developed something like dyslexia - would reverse positions of (primarily) numbers when typing or writing them down
- Falling backwards in shower when washing hair with eyes closed
- Very difficult to think/concentrating. Kept finding many small stupid, but extremely consequential, mistakes in my work. Double & triple checking was no guarantee I'd find all the mistakes.
- Missing important details when reading emails. Interpreting things the opposite of what was written.
- "Sunspot" in vision. It was a very large, round yellow spot with rough edges, covering most of my vision. With eyes closed, it was super bright & looked literally like the sun. With eyes open, it was still visible but slighly transparent, like looking through a yellow filter. Very scary. The numbness started sometime after.
- All B12, CBC tests totally normal. Had one test where MCV was *one* point over range.
- Developed progressively worsening burning over my entire body
- Several days later, woke up with complete numbness in both arms, from fingertips to elbow, along the ulnar nerve. Both sensory & motor neurons affected. Anything that wasn't numb felt like it was on fire (literally). It was *extremely* painful. Couldn't squeeze a ketchup bottle or grip objects. Could not get out of bed for 3 days. Became 100% couchbound at this point.
- Finally! The total numbness that finally led me to PA/B12. But screamed at by GP (did I study 7 years of medicine? Hmmm). Tested privately, but MMA, Homocysteine, active B12, MCV, all deadly normal. No IFAB, no GPCAB. Decided to SI anyway, worst case it wasn't b12 and i'd be no worse off.
I suspect these other symptoms started at the same time as the numbness, but those few months are a bit of a blur to be honest.
- No longer able to follow or comprehend even very simple plot-lines on TV sitcoms. Had to stop show every 5 minutes to ask partner "wait why are they doing that" only for him to explain what happened 2 minutes earlier.
- Didn't remember conversations or events
- Lost the ability to recognize numbers. If I saw "3" I could not recognize it meant three items of something.
- I could not add any numbers unless I was adding by 1. So even 2+3 or 3+5 I had to count on my fingers (of course after working out what the numbers represented). I'm an engineer that can do advanced calculus under normal circumstances!! It was quite scary being unable to flipping count!!
- Mild difficulty recognizing/understanding some words, both spoken and written.
- Could not remember names for common objects.
- Could not, to save my life, remember whether I should use "right" vs "write", or "which" vs "witch", "too" vs "two".
- Stopped driving for over 2 years . Concentration & attention were zero. Could not focus on anything.
I never had incontinence. I think that was one set of nerves that never got affected, thankfully. I had primarily upper body & brain involvement. I really wish they'd offered me an MRI back then.
It took me about 1 year of SI to *start* reversing these last set of symptoms. I slept through most of that first year. Another 1.5 years before I could function independently eg go grocery shopping and make 1 dish to feed myself. Walk around a store without dying. Have the strength to carry just a small bag of groceries. Think clearly(ish). A total of 4 years from numbness onset to starting a parttime job, and even then just barely, both in terms of energy & cognitive abilities. Had a few setbacks along the way.
My cognitive abilities are nowhere near what they used to be. But upon writing this out, I realized the choking and early cognitive issues started approximately 8 years prior to numbness onset. So, 14 years ago. I guess 6 years of daily SI hasn't been able to reverse it completely. I still notice improvement to this day! Just more slowly. I'd consider myself maybe 75% healed at this point. Still a win, I think, considering this list.
Wow!! Jade_s, that is amazing that you could even remember all of that. Thank you so much for doing all this work! It is not only going to help me but many others. I would have never considered choking on spit and water or food a symptom, but when I read it, I realized I had always questioned why I choke so easily. I have terrible dry mouth too. Thought it was meds.
You have really been through it. I'm so sorry. But I am so glad you have seen improvement and are able to do your very important work. To be an engineer and lose your cognitive functions and the ability to work with numbers let alone all of the other symptoms had to be terrifying. This is awesome that you made this very thorough list. It is going to help so many people who read this. I know how much brain power that took so thank you so much for sharing this with all of us. I really feel so many people are going to say OMG, I never considered that symptom to be B12. My nose runs constantly and I choke while eating almost every time I eat anything. When I eat at my friends, they always have Kleenex for me and they are used to me choking. Especially on liquids.
I have to say, I have at least 90% of your symptoms.
I went to the new hematologist today and he was OK. He kind of threw me for a loop when he said he wasn't completely sure I have PA even with the IFAB positive. He asked if I had started my injections at the time I took that test. I said barely started. He said it could be a false positive. He then said my B12 wasn't all that low at 221. And that now I have >2000 so he is worried that I am going the other way and could have what he referred to as it backing up in my system. he told me not to inject everyday. I said, I would love to not inject EVER. But when I can't talk or walk after two days of not injecting, then I am certainly going to inject rather than crawl on the ground or be bedridden. I said I inject per symptoms. If I feel good, I will not inject. I said I went three days tops and then my confusion starts and I can't let that happen so I inject. I don't even want to be confused a little. Dementia scares me more than anything. That is what I actually told him. He thinks I could have something else. I can't remember what he said he was thinking, but he did a bunch of blood work. and he referred me to a new hematologist and Oncologist closer to my town. It is a female so that will be nice. I HOPE.
anyway, he put me on the spot and I was now flustered about what he said about my IFAB and B12 and he asked me what my worst symptoms are. It was hard for me to think of all of them on the spot like that. I was already tired from driving an hour there and being there for a total of 3 hours, so I could not think of all my symptoms. So I am going to finish my list or rewrite it anyway to include some of the things I would have never linked to B12 that you mentioned. I always thought in the back of my mind how weird some of the things wrong with me are but that no doctor is going to believe me or they will think I am crazy if I tell them my nose itches or constantly runs. they are just going to say allergies. Or that I have sores in my mouth or that my dentists thinks my tongue is too large for my mouth. Now I know, no symptom is too small or insignificant.
Well, I am tired so I am signing off, but thank you so much for making this exhausting list of your symptoms. I'm sorry you went through all of this. You are a sweetheart and so helpful. Thank you again!! Bwell, BBrave B12!! Hugs xxxx 🦋
OMG THESE DOCTORS I SWEAR! Sh*t like this makes me so angry. Like ok say IFab is a false + , well, what about the rest!? Gahhh! Sorry. I get worked up lol. They think of the rarest weirdest conditions, anything but a condition that requires just a simple nontoxic red liquid that can't kill you even when you inject 5000x the dose of an ampoule (cynokit, for cyanide poisoning from smoke inhalation). Well, sending you strength to deal with it all 💪
I'm so happy it helped! Thank you for all the kind words! 🥰 Actually the list helped me too, seeing it chronologically. And i knew I'd forget something! Mouth ulcers! I'll edit it.
I am really sorry to hear you have so many of these. I also only later realized these were all b12d. I mean, until the numbness happened, it didn't even occur to me to research the tingling & other neuro issues. I kept telling all my doctors that I was SURE that I had *something* but they just refused to investigate. I asked on various forums and no one had any clue. I hadn't found these forums yet. A lovely lady on an Addison's forum suggested it, bless her! And it's only afterwards, as symptoms started resolving, i realized, oh yet another random thing that's actually b12d! I read quite a few on here too, later.
I'm sorry you have the choking, that was actually the scariest one of all for me. Towards the end, I was waking up choking on my saliva 2 to 3 times a week. Hopefully it will resolve quickly for you.
Forgot to add. Nose running! Yes! My friends used to make fun of me in middle school. Turned out to be gluten / wheat intolerance. I can have barley, but no wheat or rye. Are you gluten free?
I'm sure a lot of people are going to say they have a lot of these symtoms but never attribute them to B12. I have never been tested for gluten intolerance or celiac etc. Getting a sibo test on November 16th. I'm just going to let them do all these tests and hopefully they'll rule out a bunch of things. But it would be nice to find out what's wrong with my kidney. I've never even been a drinker yet I have fatty liver and a kidney issue and it all happened after I had anaphylactic reaction to Motrin. I just don't know anymore. All I know is that B12 makes me feel better and if I feel like I need it I'll inject it and if I don't I won't. This guy thinks that I've got B12 backing up in my system. He couldn't be more wrong. Anyway I asked him does that mean that I'm having methylation issues and he said he didn't know but that he was going to run a bunch of tests. So I'm just going to let him run all these tests and see what happens maybe he'll find some hidden thing that will answer my questions. But as it stands now b12 is the only thing that's ever helped me. Why is this so stinking hard for them? Why don't they know this? why don't they hear us? why don't they believe us? Who is telling them this misinformation? where is this coming from in the first place? How come they're not listening to the pernicious anemia Society? how come doctors aren't attending PAS seminars? How could all of us be telling our doctors this and them not hear us? This is ridiculous. How do we change this? Who writes the medical books we need to fire them for Pete's sake. Anyway I'm sorry I'm frustrated. Thank you again for all your help and all of your kind words and your empathy. I give it all back to you! Good night. 🌷
A SIBO test is good, many of us with low stomach acid seem to have it. I 've been tested for gluten/celiac several, including a few months ago after doing gluten loading. Negative, as with every other test I've ever had LOL. On the ThyroidUK group they say plenty of people who test negative still benefit from going gluten free. Medically it is recognized as non-celiac gluten sensitivity.
I'm sorry about the fatty liver and kidney issues. Perhaps they will be helped by B12.
I agree 100% with everything and it boggles the mind. I don't why B12 is so difficult for them. :/ We've all managed to figure it out 🙄If I start ranting I won't stop, so I won't even start. But yeah, shout it from the rooftops!!
I understand the frustration all too well. Thank you and I hope you're having a good day
I kind of think I won't test positive for sibo, and I don't think I have a Celiac issue, but something's definitely wrong in there as I'm nauseous all the time and my stomach Burns and bloats. But it's a lot better with the B12. The fact that you keep having okay tests but you still have all the symptoms is very much what's happening with me. So I'm just going to keep on going with my B12. I got a notice saying that my hydroxylcobalamine has been shipped. That was from the apotal.ed site, to the US. So finally, I think I got a place to order from Germany. How you feel better soon. Get some rest.
Also, sweating and unregulated temperature. Mine is usually 95.1 - 96.4 seldom does it go to 97.1 but it was 99.8 yesterday at the docs! Weird. Never do I ever get that high. My temp has always been low all of my life. It is always confusing docs and me.
I'll have to look into that. Thank you. Years ago I had a sweating problem which I still do. They thought it was my thyroid so they put me on a thyroid regimen to see if it would correct my temperature and my sweating. Maybe I didn't stay on it long enough, I don't know but it's still going on to this day. Hopefully these new hematologists will help me.
If you have any old or recent thyroid labs, might be useful to post them. We - or the thyroiduk group - could take a look. Perhaps there was something there, perhaps not...
EllaNore and jade_s, thanks so much for posting the symptoms lists. I, too share nearly all of these and spent years in various dr offices before hitting upon the answer-b12 deficiency. It’s terribly frustrating.
I'm glad you found this helpful ratherbewalking. It is all very overwhelming and mind boggling isn't it? I hope you're getting your symptoms sorted out and that you're feeling better. I thought I had a for sure diagnosis and now my new hematologist is trying to say it may not be PA. At least he's running a bunch of tests so I'll find out but I finally thought I had the answer after 38 years and now they're trying to tell me it may be wrong. It's all very confusing. All I know is I have all of these symptoms as well like we all do. I just don't understand the confusion and the inability to give us a complete and accurate and definitive diagnosis without any questions from any other doctors. Here I was sailing along thinking I finally got my diagnosis and a new hematologist is contradicting it. It's very frustrating. Anyway I sure hope that your symptoms are being managed by your B12. Mine are so I don't understand why they think it could be something else now when B12 is helping me.
Thank you! I said that very thing to my doc yesterday and he said b12 can make a false positive. which makes no sense to me. I would think it could give a false negative but not a positive. It just doesn't make sense to me. I will let them run all their tests to rule out anything else though. Might as well. B12 has changed my life and symptoms and no one is going to convince me that it hasn't. Nothing has ever helped me in all these years except b12.
Yes high B12 is known to sometimes cause false positives on an IFAB test, and vice versa by the way!
The newer systems do not seem to suffer from this problem . Here is a paper: sciencedirect.com/science/a... "Comparison of different immunoassays for the detection of antibodies against Intrinsic Factor and Parietal Cells" by Lukens, 2020.
A quote "Good concordance was found between the assays for both antibody specificities, ranging from 81 to 100% and 91–100% for anti-IF and anti-PC antibodies, respectively. " Specificity is the true negative rate (as opposed to a false positive). 100% means no false positives, and if you look at Table 4, four of the six platforms have a specificity of 100%, the fifth is 99%, and only one is 76%!!
Their sensitivity rates are also near 100%, so it makes me question it a bit, but as FlipperTD will often remind us, the tests themselves are accurate. The problem could be that some of us just don't produce enough antibodies to be detected. I also wonder if some of us are creating binding antibodies and the tests only pick up blocking antibodies. Flipper will know. Also, what do you think of this paper, Flipper?
I looked up whether these tests measure blocking/binding IFAB once but didn't make notes and of course I've forgotten. Add to my list of things to do!
And anecdotally, I've had 2 IFAB tests this year. I did not stop injecting before either one, I just avoided injecting the morning of the test. Both still negative. Ho Hum.
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I took high dose b12 tablets for several decades... can't say if it helped or not but i'm pretty sure I was absorbing only very minute amounts, but labs were still 'normal'.. I didn't know anything about PA then. I started SI when literally overnight I developed severe neuro symptoms. IFAB negative to this day. 
Good luck with the appointment! And I'm really sorry about the headache, 3 weeks is a long time, I hope it goes away soon. 
I also only later realized these were all b12d. I mean, until the numbness happened, it didn't even occur to me to research the tingling & other neuro issues. I kept telling all my doctors that I was SURE that I had *something* but they just refused to investigate. I asked on various forums and no one had any clue. I hadn't found these forums yet. A lovely lady on an Addison's forum suggested it, bless her! And it's only afterwards, as symptoms started resolving, i realized, oh yet another random thing that's actually b12d! I read quite a few on here too, later. 
Loading dose question
Finger/Feet numbness 
Gp agreed to levo dose increase -and talked about B12 injections!
Megadose of hydroxocobalamin
Questions about folate and neurological symptoms
