I need advise!!: Hello! I’m so happy to... - Pernicious Anaemi...

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I need advise!!

Mora35
Mora35

Hello!

I’m so happy to have found this website as I have been left alone to deal with what I highly suspect as neurological symptoms and nerve damage cause by severe B12 deficiency. My neurological symptoms are muscle twitches and I feel sometimes crawling under my skin in my calves etc.

I live in Finland, which like the UK also doesn’t sell b12 injections over the counter and the doctors seem to be absolutely useless in this field. And so after over a year of suffering from neurological symptoms and trying to figure out what was wrong with me (I was diagnosed with iron deficiency which is now fixed) I finally ordered the injections from the German pharmacy and started injecting (luckily I found a pharmacy near my house where they have a service where nurses can give the injections) about two months ago. And after three injections for the first time since this nightmare started- my symptoms disappeared! I felt like my muscles relaxed for the first time in about 1,5 years. It was incredible and I was convinced it truly was all caused by b12 deficiency.

I took the 7 loading injections (on alternating days) and felt amazing. I really thought the nightmare was over. And so I took a week break and then was going to go two weeks without an injection but about maybe after a week the symptoms re appeared. And so I have been now taking an injection once a week. However, I’m wondering if it’s enough because my neurological symptoms are back. I have some symptoms every day (even if milder than they were pre injections) and also now I noticed about three weeks ago that I’m feeling a weird tingling/irritation/prickly feeling on my left cheeks. And I’ve noticed it every day now and some days it’s pretty bad and it worries me. I’m worried because it’s a new symptom. And because I have been treating myself without a doctor who could advise me. Can this face symptom be a side effect of the injections?? Or is it caused by the deficiency? I never had this before.

Another thing I’ve been reading is that people who have neurological symptoms are injecting every other day for as long as they feel the need to (one girl wrote in another group that she did it for a year). I need to just hear confirmation that this is safe for sure and that there can be no harm in injecting that frequently?

I’m in between questions of should I pause the injections now due to my face symptom and see if it’s gets better or should I just inject more to see if it gets better? I’m so scared.

I would also love to hear from other people who have neurological symptoms and what your journey was. I’ve heard it can’t get worse until it gets better. But how long /what does it mean ?

Thank you so much for any advice. I have a appointment to a neurologist this Tuesday finally, but my hopes are quite low as all the doctors who have been treating me over this past 1,5 years have not known anything about B12 deficiency and just stared at the lab results even when I was trying to tell them that I have been taking high dosages of B12 supplements orally every day because I didn’t know I should not take it before the lab tests and when I learned that, my symptoms had already started at that point so I was reluctant to get off them for the 4months. (I have very low B12 lab results that I found in my medical chart from 2018 and the doctor never warned me. She just asked if I was using a supplement and I told her I was and that was it- and I was even using a supplement during those lab tests so my levels have been even lower in reality 😔)

41 Replies
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I'm really sorry but I have to leave for work in a minute so can't reply properly now. For more information, please would you look up my profile, by double clicking on my name, and looking under the heading "replies"?

I have written several replies on frequent injections, as have other great contributors here - lots of us inject very frequently and have done so successfully for years and in some cases decades. B12 is safe.

Also check out how other minerals and vitamins work with B12 and how you will get reasonably well with the right balance of everything.

clivealive writes good articles which may help you too.

Thank you so much for the answer. It was just what I needed when I woke up from only having slept a couple of hours last night, riddled with terrible anxiety and symptoms. After reading your message I took my health into my own hands fully: I self injected for the first time. I've wanted to do it since I realized I needed the treatment (I've had the needles in my house for a while now) but as I found this pharmacy with the service, I haven't had to. I called them today and they were fully booked so I would have had to wait until Monday to get a shot. And I have to pay 15 euros for the service each time, so that was one of the reasons (and also being scared they would deny injecting me this often after the loading dosage) I have also wanted to self inject. But the biggest reason is to be able to have my own health in my own hands and do what's best for my body without having to rely on anyone else. It's so crazy how these doctors fail us on this :(

I injected in my thigh about an hour ago and I'm starting to feel very good now. The injections always make me feel good. My muscles relax and my mind too. So thank you so much for taking the time to answer and giving me the final push to decide to inject as often as I need to. There is no reason not to inject but for me it's just been the fear of not having a doctor by my side and false information. So these support groups are a life saver (I heard about the injections initially in one).

I'm taking a lot of folate with the injections and also other vitamins and minerals- I had people advise me on this in the other support group, but thank you for the advise and I will keep searching information on all of this.

I hope you are well and have a great day, thank you again!!

Sending love from rainy Helsinki,

Mora

Fantastic! Woohoo!

Well done you!

That's great news, knowing that you are in control of your own destiny now. You are obviously very bright and perfectly capable of looking after yourself, much better than anyone else is going to!

Good luck with everything - you know where we are (in sunny England... And you can keep your rain: we usually get enough as it is!! 😁😁) and it will be great to hear your news! xx

thank you <3<3 haha, enjoy the sun, I'm happy to hear that :) ! xoxo

Hello and welcome.

I started by injecting on alternate days ( for 2 weeks) then left 2 days between injections, then 3, and so on. Each change stayed in place for about 2 weeks.

I think it’s such a relief when the first symptoms are resolved that we think the injections have done their job—- they still have a lot to do. You may have had other symptoms you didn’t think were related. I only noticed what bad tinnitus I’d had when it stopped!!

Are you taking folic acid tablets? Your body needs these together with the B12 to fully utilise it.

You’ve probably read that B12 is a water soluble vitamin so perfectly safe.

Mora35
Mora35 in reply to 06hollyberry

Thank you so much for the response and information! Yes, I will inject from now on myself and I will do it as often as I need to. I just injected myself in the thigh (first time self injecting) and I feel amazing- like I turned a corner and won't be having to rely on anyone else on this anymore. :)

Yes, I'm taking a lot of folate (5mg) on the days I inject, as advised in this other support group. I'm also taking iron, all the b vitamins, K2, Calsium, D, E, Q10.. etc..the list is long. i had very thorough lab test to measure everything at this special clinic. Based on those my doctor told me I had a genetic dysfunction that prevents vitamin B6 from absorbing into my body. And also 14 other vitamins/minerals were too low. I'm on a crazy regime now with eating and taking all these supplements he ordered me. It is a top clinic here in Helsinki but even he did not understand that my neurological symptoms can be caused by B12 deficiency and that I need the injections to cure them. In the test results my B12 was high because I had been taking B12 drops daily (4 times the daily recommended amount for months) and I told him this but he just lacked the information about the need for injections and didn't offer me a prescription (I was afraid to ask.. but will ask the neurologist on Tuesday). I told him I bought the injections from Germany and he was fine with me injecting myself if I wanted to (he gave me his permission to inject once a week).

Anyhow, I'm so grateful for all the advice and help so thank you again!!

I hope all id well with you, sending love from rainy Helsinki,

Mora

06hollyberry
06hollyberry in reply to Mora35

You’re doing all you can. I hope your neurological symptoms resolve soon.

B12 injections are totally safe. People with cyanide exposure are given intravenous doses 5,000 times those that you are taking.

In the UK, the recommendation for those with neurological symptoms is to have an injection every other day until there is no further improvement in symptoms.

For those of us who self inject, the correct frequency is - 'Often enough to keep symptoms away'. For some that may be twice a day, for others every two months. There is no standard.

Personally, I inject twice a week. If I try to leave it longer then I get depressed, irritable and paranoid. Luckily, I know recognise when this is happening (if I've forgotten an injection) and can remedy it.

Mora35
Mora35 in reply to fbirder

Thank you so much for the info! And yes, I will from now on follow this guideline and inject as often as I need to. For me the worst is the anxiety (and twitching) I get when the injection wares off.. it's terrible. I was so anxious all last night and could barely sleep and now I injected myself about an hour ago and can feel myself becoming so at ease again. It's the best feeling.

I'm happy to hear that you have learned to recognize when you need the shot - I'm just learning how to navigate all this but for sure won't wait again until I feel like absolute garbage to get the injection! This feels like a new beginning for me and I'm so happy I posted here in my panicked state last night, all this info is so helpful.

Thank you again and I hope all is well with you.

Sending love from rainy Helsinki,

Mora

Cherylclaire
CherylclaireForum Support

Here, generally speaking, the NHS give 6 loading injections, then an injection every 3 months, and those who follow the current guidelines: every 2-3 months. For some patients, this means that they can get on with their lives. For others, it's a real struggle.

My B12 level was not particularly low compared with many others here: 196 ng/L. Luckily, in my area, this was still below the range, which started at 197 ng/L !

I was getting worse when given an injection every 3 months. I was retested : B12 was by then over 2000 ng/L but MMA was also raised. Because of this, I was diagnosed with functional B12 deficiency, and put on 2 injections a week for 6 months: I was improving but then got worse again.

I was sent to many specialists: in neurology, haematology, gastroenterology, a dietitian, a salivary gland consultant, an oral medicine consultant and an Adult Inherited Metabolic Diseases consultant.

My GP was eventually told not to give me more than 1 injection every 2 months by a haematologist who had told me that B12 was toxic, carcinogenic and highly addictive. Of course, none of these statements are true, but you can see how impossible it would be to get any effective treatment from someone taking this position.

I decided to self inject at this point, and told my GP what I was doing and why. I used the every other day frequency initially, since I had had some success previously with the 2 injections a week. I self injected for over two years on alternate days. then dropped this down to every three days. I have tried to drop this further occasionally, but it doesn't work for me, at least not yet.

It took a couple of years to get folate and ferritin to good levels and stabilised. Vitamin D I get on prescription because I was found to have osteoporosis of the spine. I would get folate, ferritin and vitamin D checked, and thyroid function tested. These are the most likely problems to accompany a B12 deficiency. My GP monitors these regularly. She does not check my B12 level. She knows it will be high.

MMA took 3 years to get into normal range.

If you have B12 due to pernicious anaemia, you can have other autoimmune disorders- like vitiligo or psoriasis. There may be a family history of conditions like this- worth asking.

The usual NHS treatment for those with inherited malfunction at cell level is 2 injections a week. This can be DNA tested. It would not be a prescribed frequency if it was not essential - or if it was dangerous.

It would be good for you to find a more supportive doctor, not necessarily one with B12 deficiency expertise, but one who is interested in helping you to get well and stay there.

Hi Cherylclaire,

I’m sorry to hear about your journey, it is very insightful, so thanks for sharing. My mind boggles at ‘B12 was toxic, carcinogenic and highly addictive.’ The sarcastic side in me is being very restrained.

Cherylclaire
CherylclaireForum Support in reply to Narwhal10

...why we all have to look at medical guidelines, research, updates for ourselves.

When I was first told I had B12 deficiency and would need 6 injections, I didn't know there even was a B12, nor did I realise then that I would need more than just those 6.

I was also told by a haematologist that the reason I have short-term memory problems and cognitive issues is because I'm an ex-smoker.

The next thing I gave up ? Visits to haematologists.

Well done on the smoking and I just can’t help wondering how this haematologist survives. They must be walking around bumping into things - their head is just so up their own bottom.

But it’s no laughing matter when it’s us the patients that suffer.

Hi, and thank you for the response and sharing your story.

I'm so sorry you had to go through all that!! It's so enraging and just incredible how ignorant these doctors can be when it comes to B12. In my case also, I went to a number of doctors who completely discarded the severity of my symptoms and now I think I have developed nerve damage as it took me 1,5 years to start the injections since my symptoms started.

I'm happy you took your health into your own hands and started self injecting, hearing this is very empowering and encouraging. It's now what I'm also doing and will inject as frequently as I need to.

Yes, I've had all those checked and I'm eating all of them (folate, D, etc) and my thyroid has also been checked and was OK. I had severe iron deficiency and anemia, but my levels are up now (ferritin over 100 and hemoglobin 140) and I intend to keep them there as I never want to experience that nightmare again. .

I will keep on looking for a good doctor. My GP is super nice, but she admitted to me that she doesn't know enough about vitamin deficiencies and gave me the referral to the neurologist, which I'm finally seeing on Tuesday. Fingers crossed.. I'm also being treated at this special clinic specializing in nutrition ,but sadly even my doctor there didn't know that neurological symptoms (the ones I'm suffering from) can be from B12 deficiency and that I need the injections and that the drops aren't enough. I told him I ordered them from Germany and he gave me permission to inject once a week.

OK, thank you so much again for all the info and for sharing.

I hope you are feeling well, sending love from rainy Helsinki,

Mora

Cherylclaire
CherylclaireForum Support in reply to Mora35

Your GP sounds like a keeper. She told you that she doesn't know enough about vitamin deficiencies. Most don't - but she admitted it and referred you on.

It wasn't till I saw consultants that I realised how much my GP knew by comparison.

If you trust this GP and she is willing to help, the rest is just reading up on B12 deficiency. You, her, both. You need someone who has seen you at your worst so that if a treatment frequency works, she can see the difference for herself.

Good luck.

P.S. : 30 degrees here today !

Mora35
Mora35 in reply to Cherylclaire

Hi, yes, she was voted as doctor of the year last year and she is known for actually LISTENING to patients and not twisting their words. She is the only doctor that I can see on my chart has actually written down what I said and not twisted one thing.

Well, I do have a little update that I feel the need to share: I had my neurologist appointment today. And we are talking about the main neurological hospital in Helsinki. Top neurologists. Public sector.

And... haha, thank god I was prepared mentally!! I told him my story and that I ordered B12 from Germany and started injecting two months ago. His face dropped and he got angry. He told me that my symptoms may be from a possible B12 deficiency but that they might just then be permanent and that I should basically learn to live with them. He told me to stop the injections immediately and to only take one tablet (1mg) of B12 per day and folate. It was weird as he did also say that taking a lot of B12 (even the injections) isn't harmful as it will pass through urine.

I was sitting there, very relaxed (as I had prepared for this) and just asked him, "why have my symptoms then gotten better only with the injections? and that I've read that once there's neurological symptoms, the oral supplements won't work- it's too late for them." Which he basically just quickly stirred away from and kept saying there is zero reason for me to inject B12. He also told me not to go back to this special clinic that I visited two months ago because they are not trustworthy (the place that gave me my first B12 shot to make sure I'm not allergic and also told me I had a genetic dysfunction that prevents B6 from absorbing) and that their lab tests are basically completely unnecessary (as the public sector does not test active forms of B vitamins and thinks it's not valid..).

The great thing was tho that he examined me and ruled out MS and other diseases (which I'm obviously very grateful for and relieved). He did write in my chart that I have an unspecified "sensory sensation/numbness" on my left cheek., but told me I should worry about it but if the symptoms continue to then schedule a new appointment.

He told me to stop taking B6 immediately. Which I actually have just to see if my cheek goes back to normal.

And of course, as I was leaving, he looked at me and said: "And you know, try not to stress too much, these symptoms can be psychological also." I had been waiting for him to say that and would have been surprised if it would have been left unsaid (he will probably write in my chart too that I'm imagining this all). Finland is all about everything being psychological and a prescription for anti depressants is one visit/maybe even phone call away, where as a prescription for B12 injections is literally under the rock.

So yeah. I owe my health (symptoms have been improving again since after two injections in the past days) to these support groups where people know what they are talking about. It's probably saved me from permanent suffering and un-reversible nerve damage and is helping me get my life back. And I will DEFINITELY keep injecting!!

Great to hear it's warm there :)

helvella
helvella in reply to Mora35

Regarding B6, the precise form of B6 can be crucial. Have a read of this:

healthunlocked.com/thyroidu...

Mora35
Mora35 in reply to helvella

thank you for this. Argh, I just noticed that this one supplement I've been taking for about two months now has it in the wrong form ( pyridoxine).. the other one had it in p-5-p. I think the pyridoxine form is not suitable for me as I had a bad reaction to it once before when I took it. (just one pill and my foot got a burning rash).

helvella
helvella in reply to Mora35

I don't like bans, just in case they have unforeseen consequences, but I am really starting to think that pyridoxine should never be used in vitamin supplements and the only way of forcing that might be a ban.

Mora35
Mora35 in reply to helvella

do you know if it's still safe to keep injecting B12? Can that somehow affect the B6 from staying in my body? Sorry if it's dumb question, just wanna be sure not to make this worse.

helvella
helvella in reply to Mora35

I hope someone who knows will answer!

Cherylclaire
CherylclaireForum Support in reply to Mora35

Would you live with a neurological condition if it might be improved harmlessly by B12 injections ? Of course not.

You lose nothing by being wrong, except a couple of years of an alternative remedy ...... oh, that's right, there isn't one !

Or perhaps a couple of years searching for an alternative reason for your neurological symptoms ...... oh, that's right, he has ruled them out !

And yes, he is right that neurological symptoms can be psychological.

Even if they were in your case, and you believed that B12 injections relieved these symptoms, given no other means of making you feel well, I'd probably just leave you to it and monitor your general wellbeing and improvements. Real or imagined.

Still can't see the reason for anger here.

Your's, maybe !

fbirder
fbirder in reply to Mora35

"I had a genetic dysfunction that prevents B6 from absorbing"

Walk away from any place that tells you garbage like this. Especially without actually testing your genes.

What was this dysfunction supposed to be?

Mora35
Mora35 in reply to fbirder

This clinic tests the active forms of the vitamins (not sure how to translate this), and the active B6 in my body was very low, lower than the threshold. The doctor told me that is usually caused by a genetic dysfunction that causes my body to not utilize B6. When they tested my overall B6 levels at the other lab, my B6 was over the threshold, so there's a lot of it in my body just "floating around" or smth haha. It makes sense after I got the active test, because I had never used any B6 supplements and I couldn't understand why the level was so high until I knew it's not actually absorbing :/ I'm not an expert on this at all, but this how I understood it..

I spoke to my mom about this and she remembered that many years ago a doctor told her that her B6 is low and ordered her to take B6 supplements. This is something like over 20 years ago and she couldn't remember any specific test results etc. My mom told me she has been taking B6 for all these years, but always for a couple of weeks/months and then a break in between.

fbirder
fbirder in reply to Mora35

Was this a real doctor?

Mora35
Mora35 in reply to fbirder

haha, yes. it's a known private clinic here that specializes in nutrition. They use this laboratory called the mineral lab, that does very detailed tests and the right tests to measure active forms of vitamins in the body to see how they are functioning.

I just noticed that this neurologist I visited yesterday had written in my chart that if my symptoms persist etc.they could order some specific test to see if I have some dysfunction that causes my body not being able to utilize B12. I've never heard the public health care agreeing to do tests like this so I'm very surprised now. However, I'm sure by body is utilizing B12 as after starting the injections, my symptoms have been relieved :)

fbirder
fbirder in reply to Mora35

What on Earth is 'the mineral lab' supposed to be?

What are the 'active forms' of vitamins?

Mora35
Mora35 in reply to fbirder

oh, it's actually just the name of the laboratory here, I just translated it. Here's a link to their page- it's also translated into English. laboratorymila.com/ .

With the active forms I mean testing to see how much is active in the body rather than the overall amount. In Finland they are commonly used tests and the one for B12 is called S-B12-TC2 test. (the overall B12 is called S -B12-Vit).

fbirder
fbirder in reply to Mora35

Ah! Thanks.

Yes, the ‘active’ B12 test.

B12 in the blood is bound to one of two proteins, haptocorrin (HC) or transcobalamin (TC). About 80% of the B12 in the blood is HC-B12, but only TC-B12 can enter the cell; it is this that is called ‘Active’ B12.

The normal serum test measure both types. The ‘active’ test only measures TC-B12. The test for ‘active’ B12 is supposed to be more precise and more accurate than the serum test.

However, it still has the problem of overlapping ranges for people who are deficient wand those who are not.

Some speculate that they may have a deficiency in ‘active’ B12 and lots of HC-B12. I think I’ve only heard of one person where that looked likely.

Mora35
Mora35 in reply to Mora35

I wanted to give an update in case anyone is reading this thread: A couple of days after my neurologist appointment, I went to check again if one of the most well known doctor specializing in iron and B12 deficiencies here would somehow have an available appointment. (I have been trying to see this doctor for over a year but she is fully booked 12 months ahead and she hasn't been able to take new patients for a long time). Somehow, this time the stars were on my side and there was one appointment free in her calendar (for the whole rest of the year), and it was already in four days!! Someone must have just cancelled their appointment and so I immediately booked it. I cried for a couple of hours because this meant the world to me as I knew I would FINALLY get to see a doctor who actually knows about this stuff and is out there to help people get better.

My appointment was in the beginning of this week. I told her my story and what the neurologist had said (to stop injecting immediately) and the look on her face was a little horrified. She calmly said: "You don't need to learn to live with the symptoms, there is a cure, and it is B12 injections." She looked at my recent blood test results (where my B12 is very high) and told me it didn't matter what the results were because I'd been taking 5 times the daily amount of the oral B12 drops for months daily before the tests. She said that I have obviously been deficient on B12 for so long that I developed neuropathy and that even if oral supplements make my B12 levels rise, they won't cure the damage. ( I showed her my blood results from a couple of years ago where my B12 is low, but my doctor back then hadn't warned me - just told me to keep taking it orally, which I was already doing at that time).

And so she prescribed me B12 injections for a year worth of supply. We talked about injecting twice a week and gradually then less frequently but we also talked about if I have to inject more often. She also understood why I had ordered the ampules from Germany and self injected and was on my side.

So, I just wanted to conclude: My almost 1,5 years of struggling with this nightmare and trying to find a doctor who understands this is finally over. Just having the right diagnoses in my medical chart from this doctor and the prescription is psychologically unbelievably relieving. Not to mention to have her as my doctor - a person who actually cares that I get better and who is treating me based on my symptoms instead of staring at the blood test results and denying them. She is also one of the two doctors who haven't twisted my words or story in my medical chart, but wrote down exactly what I told her.

I hope my story will give some light and show that there are doctors out there who understand this, very few of them - but they do exist. Hopefully there will be more in the future and that we don't have to fight to get treatment for this vital vitamin (I'm still struggling to wrap my head around the fact that one needs a prescription for a VITAMIN).

Also, I just read that today is B12 deficiency awareness day, so happy day to everyone.

Not everyone does well on folate supplements. I know I see a lot of folate recommendations around here. I basically thought B vitamins were harmless. but I also noticed every time I got on something that contained folate folic acid I felt worse. I would read about how taking a B supplement is good for you, take them, feel noticeably worse and stop. This happened to me several times.

A few years later I read some theory on it. I think it has to do with the methylation cycle. For some undermethylated people folate can make them feel mentally a lot worse.

Anyway there's lots of theories on the mechanisms for these things. Maybe some of them are right. what I know is I won't take anything with folate anymore. I feel like B vitamins are different enough from each other that they need their own names. People think because they are all B vitamins they are all similar. Not true.

You mentioned you're on lots of supplements. Something I've recognized in the last few years is that supplements can make you better but they can also make you worse. For example I personally wouldn't supplement with calcium. From what I've read people don't have a problem getting calcium in their diet. They have a problem absorbing it and using it. and there have been some studies done that show high calcium supplementation can be detrimental. D3 and k vitamins appear to be harmless and help with calcium absorption. So that's the way I go.

Everyone is so different. and unfortunately the proof is in self-experimentation in my opinion. I keep a list of the things I'm trying and a log of how I feel.

Mora35
Mora35 in reply to Thunderdoggy

Thank you for the advise! I do think that my weird face prickling sensation was caused by this new B-complex I started taking. I stopped taking it on Friday and the sensation already feels to be relieving. I also stopped taking the cocktail of vitamins at the same time just for some days to see how I feel. It's a lot I'm taking at the moment and it doesn't feel great at all..

With folate, B12 or Iron I haven't noticed any side effects or bad feelings, at least until now. I will keep on monitoring. I've heard of people having strong reactions to folate.

With calsium, thank you for the info, I think I'll just finish this bottle of supplements (not a lot left) I have now but won't continue after. I have completely changed my diet (which was lacking everything for years) since this all started and I'm constantly adding new things to my diet to make it sufficient.

I was keeping a nutrition/supplement/symptoms- journal at one point this summer but it got to be too much to keep in track of absolutely everything. I still keep track of my symptoms in my calendar and the injections, but keeping a list of other supplements too is a great idea.

fbirder
fbirder in reply to Thunderdoggy

What is 'undermethylation'?

Thunderdoggy
Thunderdoggy in reply to fbirder

methylation is a basic chemical process that happens all the time in the body. but it needs to happen at the right rate and in the right places. there are lots of consequences if this isn't done right. when i was reading up on it i focused on detoxing issues and mental health issues. less methylation = less detox & more depression. you can google that stuff and read for about a year. : ) i was mostly reading it from william walsh's research which was the mental health perspective.

so the idea is you consume more methyl donors and increase your methylation. methyl is a small molecule and the body shuffles it around to and from other molecules. thus people take methyl b12, methyl folate, SAMe....all of which supposedly donate methyl groups and increase methylation. good if you are undermethylated.

according to walsh's lab tests i am undermethylated. i also have many symptoms of an undermethylated personality. but in practice i got no relief from methyl doners. i did however learn from walsh a possible mechanism of why B9 makes me feel bad. he called that one.

fbirder
fbirder in reply to Thunderdoggy

And can you quote any real scientific papers about 'undermethylation'?

Thunderdoggy
Thunderdoggy in reply to fbirder

there are probably hundreds of them. can't you search research databases where you are?

ncbi.nlm.nih.gov/pmc/?term=...

i did a search of the national institute of health which is one of the big research orgs in the US. i got 700 results. in the first page of results there are 7 studies that have undermethylation in the title.

like i said, methylation is a super common process in the body. it's not a niche topic at all. if you want to relate it to a specific health problem you will have to do some searching. but if you are interested in the the mental health aspect check out william walsh's work.

fbirder
fbirder in reply to Thunderdoggy

Yes, I can search the research papers. I also can understand the results.

They are all talking about undermethylation regarding activation/deactivation of DNA. No mention at all of undermethylation as a process involving vitamins.

fbirder
fbirder in reply to Thunderdoggy

Can you quote any of the scientific papers that Walsh has had published on the topic? I'd rather not click on any of his clickbait websites or his book.

Thunderdoggy
Thunderdoggy in reply to fbirder

Are you really interested? Or are you just putting me on trial for something I said?

You asked me to define undermethylation. I did..

Then you asked me for scientific papers on undermethylation. And I sent those.

Now you were asking me to go through Walsh's research and the references in his book and specifically look for undermethylation as it relates to vitamins and supplements?

I don't recall being hired as your research assistant. But then again my memory is not that good. 😂

Here's the connection. Methyl donors affect methylation status. Again this is a huge area that you're going to have to look into on your own. What are methyl donors? Some of them are things like: folate, vitamin B12, methionine, betaine (trimethylglycine), and choline. Now some of those articles on PubMed are about methylation and how it affects epigenetic expression. they are relevant. if you were sincerely asking me what undermethylation was a few posts ago I think you need to read more about this stuff. No offense.

and here is a study specifically talking about methyl donors and epigenetic expression. Or as you said methylation as a process involving vitamins. And to be clear methylation status isn't just about vitamins.

pubmed.ncbi.nlm.nih.gov/227....

All I'm saying is that some people have problems with folate. I'm one of them. and then I said I never understood why until I read Walsh's work which proposed a possible mechanism having to do with methylation. I've read his book. And that is very much his position. Is it right? I don't know. Was this original research done by walsh? Maybe. Maybe not. If you're super interested go through the references in his book on methylation.

I don't think you have a genuine curiosity. If you did you would have found all this information yourself. I think you're just putting me on the spot. Which is a mute point because I don't know if Walsh is right or not as I said earlier. Frankly there are a lot of common drugs used today and no one understands exactly how they work. But they do work. I'm way more focused on outcomes than mechanisms. By the time science proves some of these mechanisms I'll be dead. 😂😂

fbirder
fbirder in reply to Thunderdoggy

Your quoted papers didn't back up your definition of undermethylation.

Yes, there are many drugs on the market where they don't know how they work. The difference is - there is lots of real evidence that they do work.

Your stuff about undermethylation and detoxification and methylfolate causing problems because of undermethylation has zero scientific evidence in favour of it.

I did as you suggested, I googled it. But not the bog-standard google, but Google Scholar. It doesn't bother showing hits from clickbait websites and scamming quacks. It shows hits from scientific papers. And when I did google 'undermethylation detox methylfolate' I found a grand total of zero peer-reviewed scientific papers (but there were only six hits - all book excerpts).

When I did a normal google I got 6,700 hits, almost all of them trying to sell me something.

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