I don't have PA, but had low B12 and high homosysteine (which might be caused by certain mutations I now know I have).
Was on B12+B6+B1 injection and figured that maybe I'd try to be without it as they say I have no real illness just deficiency.
Things went bad. Had glutened myself accidentally, and without the shot my heartbeat went weird, due to low blood pressure can be 150 in the morning. Was short of breath, nauseous, diarrhoea, very weak, stiff muscles especially around hips sore to touch which lead to wobbly legs, feeling not digesting any food, heartburn, not able to burp or fart.
I couldn't wait for longer had to get some but was too lethargic and upset to go to get shot, took methylB12 1000mcg which eased many symptoms but it turns out I have genetic mutations that make methyl B12 otherwise not suitable. But at least I absorb B12 that way, I'd be better with hydroxo/adenosyl and cyano works for me as well. On top of that mutations that indicate I use B12 fast therefore higher /more frequent dosaging.
I have also MS, which at the point is considered very mild and few lesions on brain but not active, but my nurse says ALL my symptoms are down to MS and they are not going to support my B12 shots.
I feel these symptoms are very anemia/deficiency like as this morning( 7th day on sublingual B12) my heart rate was normal, I am not short of breath, have appetite, can eat, no heartburn, no diarrhoea , still a bit wobbly but muscles start feel better. All in all feel much more myself , engaging with people, stamina to walk a with the dog.
Only thing is that I can't sleep on methyl B12 and get tired/wired. But will get my shot tomorrow and getting them as long as I can.
It was scary and weird to go that bad that fast as November I went to xcountry ski, long walks etc. Then this when I think I can manage.
If they discontinue my shots I have to then think about selfinjecting if for some reason hydroxo/adenosyl sublingual doesn't work.
Or am I barking at wrong tree, even though I have read stories of people with PA having exactly this bad symptoms?
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Justiina
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No. There is no evidence at all for them affecting methylcobalamin in any manner different to the way they affect other types of B12. Not a single, repeatable, reputable scientific study has shown any link.
Can't argue with that. I have had bad experience with methylocobalamin years ago. Got my genetic test this fall for family tree and used the raw data to look for whats going on. Comt 158v and vdr taq was mentioned possibly causing hiccup with methylocobalamin , tho I had a little hiccup here and there possibly causing this and that , for example compound MTFHR which seem to be tricky in many cases.
Personally I can't say I would blindly believe any of it to be that big thing but that's just based on my experience. I do well on cyanocobalamin and haven't been able to test what hydroxy/adenosyl would do. Maybe as bad as methylocobalamin and cyanocobalamin would just be the best choice for me for example because it is slower release.
I have read few theories about it is actually overmethylation causing issues, and for example comt would be natures way to slow down overmethylation and it would be wiser not to feed the system with any methyldonors.
In the end until all is 100% proven to one way or another it's trial and error for me, when methylocobalamin do relief some of symptoms I just can't deal with how I feel with it, it going through so fast, my temp shoot up, I get a bit sweaty, wobbly , and it leaves me incredibly hungry. I don't even know is it bad reaction or is it good reaction, so many theories about what is bad and what is good.
I, too, suffer horrible side-effects from methylcobalamin. But know it's not due to any COMT problem (because I don't have either of the mutations that are supposed to cause the problem) and I know it's not MTHFR, MTR or MTRR (because, although I do have mutations in those genes, it's biochemically impossible - those genes code for enzymes that involve cob(I)alamin or cob(II)alamin.
Ah ok. It was just my personal experience companied with test results. These mutations were not my first interest anyways, was looking for possible hiccup with thyroid/dio1/dio2.
Naturally causes for bad reaction to methyldonors , mine could be mercury until can afford to fix the fillings , if it's true that methylocobalamin sublingually pulls mercury from teeth and gutlining turning into methyl mercury.
But then I think the most obvious case it is that it just acts way too fast , and use all type of co-factors, nutrients etc faster I can keep feeding them. Sounds more reasonable anyways 😄
Never heard the idea that methylcobalamin could react with the mercury in fillings. Sounds like nonsense. Can't apply to me though as I have no fillings.
No, it cannot act faster than other sorts of B12. All forms are converted to cob(II)alamin as soon as they enter the cell. From that point onwards they are identical.
But it must be methylating something elsewhere.
If somebody has a spare £20 million I know a great study that could help figure out just what is happening.
Yeah, I am just playing with ideas of any possible cause of intolerance I have read/ heard meaning there probably are so many causes not just possible genetic mutations.
By acting fast I meant 1000 mcg methylocobalamin sublingually is absorbed faster and used faster compared to 1 mg cyanocobalamin IM. I have no idea except my experience of feeling very different on injection. Tho, it has B1 and B6 with it, which both have different beneficial functions.
Oh I wish I had that money, would use it immediately for greater good for all of us.
I don't think that B12 can be absorbed sublingually. Even the studies that purport to show that it is say that only 1% of the dose is absorbed.
If I had the cash I would use radioactive methyl iodide to make radioactive methylcobalamin, inject that into a few human volunteers and collect blood and urine from them over 24 hours. Then I would look at the urine samples to see what radioactive components were excreted, then try to identify them. It's what I used to do for my job.
Well some must absorb or otherwise it is placebo for me ,both intramuscular/orally ,
as supplementing did improve my overall wellbeing so much I feel decent ,but it feels unpleasant and naturally wears out fast compared to intramuscular cyano. I know orally absorption is low.
Bigger problem is that I probably have something else going on at the same time and I have too high hopes for B12, it helps but only to certain point. I was hoping it was THE issue and fixing it would resolve rest of the problems. Now I just hope I'd find away to keep this "decent" feeling steady, that's why I was hoping supplementing orally would have done the trick.
My doctor , nurse etc all put it down to MS and I need find away to stay somewhat functional until I get help.
A GI problem could cause most of your symptoms, including low B12.
Maybe try a GI-MAP test (a home DNA stool test from Diagnostic Solutions Labs) to check for an infection, etc? They are available online at various places, like mymedlab.com.
That could be true. I personally believe my system was completely destroyed by multiple course of antibiotics 1991-1998 companied with chronic yersinia enterocolitica.
Wanted to add that twice I have tried to switch from cyanocobalamin to methyl. And both times it did not go well.
The last time it was an injection. And I was excited to do so as I have worried about cyanocobalamin over time and having one kidney. And I self-inject and switching to methyl meant I could get it done by a health care provider and keep costs down. And probably less shots too.
But just like you it was plus and minus. But too much on the negative side.
I could feel how well it was working in the sense that I didn't need to frequently inject. But one of the first nights I did not sleep - at all - all night! And tough sleeps for quite a few nights. And cyanocobalamin had given me better sleeps than I ever had in my life. I also felt "off" mentally - felt overly emotional. I thought it was stress I was dealing with and never assumed it was the methyl. But not tearful or "off" as I get farther away from the injection and I still have the issue/stress.
So back to cyanocobalamin for me.
Just want you to know you're not alone with that part.
Oh and Justina, have you had your vitamin d levels checked?
I have both deficiencies and I have attributed sore bones/areas to the vitamin d deficiency. I won't bore you with why I think that but it is worth checking to cross it out.
Oh nice to know I am not alone. Cyanocobalamin gave me too the best sleep ever, easy to fall asleep and woke up feeling good.
How often you need cyanocobalamin compared to methylocobalamin?
I do feel benefits of methylocobalamin as it is form of B12 and my digestion falls apart without B12.
But I am a bit too alert and not as calm as on cyanocobalamin.
About D, yeah it does affect and I do think I am again on low side and been taking it especially because I live at artic circle where winter is long and dark and full of terrors.
Vitamin d - so you had a number, correct Justina? Just in case - if you're severely deficient regular/moderate supplementation amounts are not going to do much.
( For anyone reading -
High amounts of vitamin d supplementation need to be closely monitored and checked at 2-3 months as high amounts can cause other health concerns)
B12 -
I didn't push the time period enough to really know Justina. But I am taking cyanocobalamin every other day/twice a week due to cognitive issues (I am early in - four months). And symptoms have tried to return if I push the time gap out. But I felt that I literally could have gone two weeks to a month at least with methylcobalamin, if I ignored the cognitive protocol. I could feel a definite difference in that sense. But then again didn't push it to see/prove that thought, as I was eager to get back to cyanocobalamin.
I think I went back to cyanocobalamin at around the two week mark, due only to eagerness to wipe methylcobalamin from my memory! Insert smile.
Yes , first time around I was monitored for vitamin D as I was tested deficient. My levels normalised relatively fast and remained good quite long time. But been taking 50 mcg here and there waiting to get retested.
Yeah, I felt the need for injection 5-7 days for the first 4 months and then was able to do 12 days , but as I have to get mine injected by the nurse, the injection being 3 ml and butt is only big enough muscle ,got so bored of it and thought oh I will manage. Cleary I dont. But no can do.
Do your doctors know that the common tests for Pernicious Anaemia are not always reliable and it is possible to have PA even if test results are negative (called Antibody Negative PA)?
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
There are people on this forum who have been diagnosed with MS only to find out later that their MS type symptoms were due to PA or other causes of B12 deficiency.
B12 deficiency can lead to white matter lesions in the brain.
There are many possible causes of B12 deficiency eg diet, PA, Coeliac (spelt Celiac in US), Crohn's disease, fish tapeworm infection, exposure to nitrous oxide, low stomach acidity plus others.
I hope your doctors have tested for and excluded other reasons for your B12 deficiency.
Nobody seem to care about the B12 and they just push MS. I have refused medication so far as I am not well enough and I am sure I would get far worse with it.
So no, it has not been investigated nor noticed my hcy was over 25 which I think confirm there is an issue somewhere else than just MS.
Yes of course it can be MS ,but whatever else is going can worsen the MS, this no one seem to care. Only psychiatrist was interested of my symptoms disappearing on vitamin B injections, but have to wait long time to get another appointment as I don't have depression/anxiety.
I am hoping psychiatrist will do the necessary referrals to tests as she said they often have to do the dirty work and rule out physical diseases.
Thanks for the links, a lot of information I hope someone would consider important!
PAS (Pernicious Anaemia Society) has members in other countries besides UK so might be worth joining PAS.
MS as a possible misdiagnosis of B12 deficiency is mentioned in the following books. There is also some info on patients with confirmed MS finding B12 injections useful in Sally Pacholok's book.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I also plan to read
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
"it has not been investigated nor noticed my hcy was over 25"
Have you also had MMA and Active B12 tests (also known as HoloTC/Holotranscobalamin) in the past?
Results of MMA, Active B12 and Homocysteine are likely to be affected if patient is already supplementing with B12.
Some of the units and ranges for blood tests in links below may vary from those used in your country.
Link about "What to do next" if B12 deficiency suspected
Ohh we Finns do not do support. We rather pay 100 to prevent our neighbor to get 50 😄 Fortunately can join foreign support groups to get more information.
My hcy and serum B12 was tested before supplementing/injections. Hcy was high and B12 on low end, under 200.
I think I had the holo/tc test maybe 4 years ago, was normal if I remember.
MMA test not done in Finland at all.
Antibody tests can be done. But hard to get.
Otherwise my blood tests look ok except low leukocytes, sometime under the range , ignored immediately rise a bit above range. That is why I am concerned about MS meds as they lower leukocytes but they say no problem as no inflammation marker high.
I have no other known disease which is why they consider me so healthy, I have no pain , low pb etc.
At the moment I have no permanent nerve damage , just a lot of pinched nerves because my posture is so poor and have no energy to sit up properly ,( injection resolves that.)I have hard time engaging normal life feeling like spineless and no stamina.
Books you mentioned seem interesting , might order one!
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