Sudden shortness of breath- b12 malabsorption? potassium?

[goonie8473]

About a year ago I started supplementation for improving methylation, primarily focused on MTHFR A1298C (homozygous) to address lifelong depression, mood swings and fatigue. Using Freddd's protocol as a general guide, I've been tinkering with supplements and increasing dosages of MB12 and methylfolate for a while, as well as continuing to educate myself on this forum, but I just can't figure out what factor (or combination) is holding things up for me Many thanks in advance for reading my story.

Aside from usual startup reactions (mostly figuring out the fine line between undermethylation and overmethylation), a scary side effect I get episodically is shortness of breath and difficulty taking deep breaths that comes on quite suddenly. I get energy and mood swings throughout the day, too, and these episodes often coincide with just feeling really tired and weak with only occasional palpitations. It usually hits a few hours after taking mb12, methylfolate and a b-complex (I take a couple of others like p5p and vit D) but have tested that it seems to happen with those three.) Adb12 I have been back and forth with at different dosages because it makes my arms very bulky, ha (I am a female).

I had more severe episodes when I started methylation on very low dosages (~200-500 mcg mb12, 50-150mcg of methylfolate). I have raised these over many months to 6-8 mg mb12 (sublingual) and 800 mcg methylfolate (split into 400mcg 2x a day). At first I thought methyl trap or donut hole folate sufficiency but I have always taken more mb12 than methylfolate and my b12 current dose is almost 8X more than the methylfolate.
I am fairly sure it's not potassium or hypokalemia but I am still testing- I have tried not having any potassium at all and haven't had this happen (occasionally I get twitching or tight muscles at different times than these episodes, which clearly indicates electrolytes. I take 400mg of magnesium every day and my nutraeval results indicated I was a bit HIGH in magnesium). I drink coconut water a few times per week if not almost every day and occasionally have a bit of potassium gluconate, but it's odd that these episodes just happen so suddenly... FYI I have had tests and a chest scan at the doctors and gotten my blood drawn on a day this happened; potassium serum was 4.2.

I also wonder if the b-complex I'm on (NatureMade, recommended by Freddd) has too much niacin that is soaking up extra methyl rendering the methylb12 less effective? My blood serum for b12 still tests off the charts even though I've been taking sublinigual mb12 for months, experimenting with two different brands. Nutraeval results indicated that I don't need too much niacin. or actually MB12: 500mcg was recommended, with 800mcg for methylfolate.

Can potassium side effects happen this suddenly? I keep researching this but it seems like others have different mostly muscle-focused reactions. Is there something going on with the b12 not doing its job? I do have a MTR defect, too, which indicates more is needed, but shouldn't 8mg be enough?
Any insight is greatly appreciated. I really value how much people on this board contribute their stories and further push the conversation for treating these types of diseases and genetic defects holistically.

 

[skwag]

potassium serum was 3.2.

Did you post this correctly? 3.2 is dangerously low. The lab ranges are usually around 3.5 to 5.3 mmol/L.

 

[goonie8473]

Did you post this correctly? 3.2 is dangerously low. The lab ranges are usually around 3.5 to 5.3 mmol/L.

Oops! You are right- it was 4.2 (edited), so a little on the lower side of normal.

 

[skwag]

Hi goonie,

I'm glad your potassium is within range. Some people do start feeling symptoms of low potassium at 4.1 or so. So it could still be a potassium problem, but this is less likely.

Donut hole folate deficiency refers to deficiency symptoms that can arise after taking low doses of methylfolate. It is as if your body says "Wow, that was great! Now give me some more!" To get out of the donut hole deficiency state some people need to take much more than 800mcg daily. Often it takes 5000 mcg. Sometimes 15mg or higher.

You could test this by moderately increasing your folate dosage and seeing if any of your symptoms resolve.

 

[Kathevans]

Hi goonie,

Your symptoms look very similar to mine. I've been working on methylation--intentionally anyway--for about 4 months and am generally up to about 3-4,000 mcg MeB12 and up to about 1,000mcg folate. I haven't yet been able to tolerate Ado B12 more than a couple of days in a row without getting over-methylated (yes, I know Ad B12 is not a methyl donor, but it seems to have a profound effect on mine)--though I am considering trying to pulse it every few days. I take 900-1200mg potassium a day. The breathlessness occurs fairly often at these doses. I don't always notice it because I'm not always very active, but I do find that at times I hardly have the energy, or breath, to talk much. Phew!

I keep thinking it's just as @skwag says, that my body is using up the folate I'm giving it and then saying, "More! More!" But who knows?

My approach is to back down a bit for a day or two or more, then begin to go back up again. Sometimes I stop for a few weeks and work on other 'basics'. Zinc is still a big one for me. I'm going up very slowly. With the MTRR and BHMT issues, it can help. I know I also have adrenal issues and have just bought some liposomal C. I'm going to start titrating that, too. As far as I can see, it's all hit or miss and you can use your snps as a guide, but your body is the ultimate arbiter.

I'll be curious to see what works for you!

 

[goonie8473]

Hi @Kathevans,

This is super delayed, but thank you for your response! And from a fellow Bostonian, nonetheless While these symptoms are, of course, not fun, it's nice to know you're not the only one going through them. I'm curious what your dosages of MB12 and methylfolate are now and how you are feeling?

I was able to ramp up the methylfolate to 1,000 then 1,600 and even 2,400 at one point several weeks ago, with methylb12 up to 6,000-8,000. I would pop a 400mcg whenever I felt these symptoms coming on, however, I have noticed as a whole that my anemia symptoms were more severe and I even ended up in the ER the other night with low hemocrit/red blood levels after being so short of breath, weak and just feeling exhausted. (plus the anxiety from MF didn't help). I don't know what happened but I am definitely taking a break from the methylfolate...

Hi goonie,

Your symptoms look very similar to mine. I've been working on methylation--intentionally anyway--for about 4 months and am generally up to about 3-4,000 mcg MeB12 and up to about 1,000mcg folate. I haven't yet been able to tolerate Ado B12 more than a couple of days in a row without getting over-methylated (yes, I know Ad B12 is not a methyl donor, but it seems to have a profound effect on mine)--though I am considering trying to pulse it every few days. I take 900-1200mg potassium a day. The breathlessness occurs fairly often at these doses. I don't always notice it because I'm not always very active, but I do find that at times I hardly have the energy, or breath, to talk much. Phew!

I keep thinking it's just as @skwag says, that my body is using up the folate I'm giving it and then saying, "More! More!" But who knows?

My approach is to back down a bit for a day or two or more, then begin to go back up again. Sometimes I stop for a few weeks and work on other 'basics'. Zinc is still a big one for me. I'm going up very slowly. With the MTRR and BHMT issues, it can help. I know I also have adrenal issues and have just bought some liposomal C. I'm going to start titrating that, too. As far as I can see, it's all hit or miss and you can use your snps as a guide, but your body is the ultimate arbiter.

I'll be curious to see what works for you!

 

[Kathevans]

Hi @goonie8473!

I hope you're feeling better. I got as high as about 1600-2000 mcg folate and 6,000 mcg MeB12 and, I have to say, it just didn't feel right. There was a sense of my head buzzing, feeling a little bit overwrought, wound-up. Because of my MAO snp, I decided to return to addressing B2 levels. I'd been tested low on the NutrEval test a year ago. So, I dropped back slowly to about 600-800mcg Folate per day and 3-4,000mcg of MeB12. It felt like a vacation at first!

After reading the B2 I Love You thread, which recommends keeping other supps low or pretty much non-existant, I worked my way up 1/4 of a Source Naturals tablet per week over the course of a month and felt many changes to my sleep, especially a realigning of my circadian rhythms so that I slept more during the night and woke earlier. Yet somehow by the time I got up to the whole tablet, I was suffering from worse sleep--a result I realize in retrospect was actually an induced folate deficiency.

So...I dropped back on the B2, raised my folate again, but initially only to 1200, then began to add ADOB12 successfully for the first time after a half-dozen past attempts. This time I took 1/4 of Seeking Health's AdoB12, which is a 3,000mcg sublingual, so that was 750mcg. Great results initially--less pain, more energy, better sleep. Which then diminished to worse sleep and what I recognized, once again, were folate deficiency symptoms!

So now I've upped my folate to 1600 once again, and the MeB12 to 3-4,000, but this time I'm adding 1/4 FMN and 1/4 ADOB12 (these in addition to a daily b-complex kept very low intentionally so I can figure out what I need most!--I use 1/2 Seeking Health B-Minus each day, taking 1/4 in the morning and another 1/4 in the afternoon. This keeps the lower Bs to about 10mg). This combination yields a tired morning, but reasonable afternoon and evening.

We'll see what raises its head next. It's exactly what @Freddd refers to as 'refeeding syndrome' where whatever balance you think you've reached, your body, if you observe symptoms carefully, reveals the next deficiency you've induced by taking high dosages of other stuff--whereupon you need to 'feed' that.

It's a game of wack a mole, but much less fun because it's your body you're wacking each time you run out of the nutrient you thought you'd taken care of the last time around!

But at least I'm beginning to see a pattern. Maybe that's a beginning... I can respond to it faster now. And, to respond to your question, I am feeling a bit better, though not always. I have far fewer of those 'breathless' moments.

If you keep careful track of symptoms you can begin to see what you're reacting to. We are each unique. But I've learned a lot from reading others on the forum. And, haven't we been having a much nicer winter than last year when the snow was up to my ears?!

 

[Johnmac]

I don't know, needless to say - but it's worth mentioning that shortness of breath can be an iron-deficiency symptom.

 

[Kathevans]

it's worth mentioning that shortness of breath can be an iron-deficiency symptom.

Thank you for mentioning this! It may play a part. When I told Greg, the B-12 Oils guy that my ferritin levels were normal at 81 in a range of 16-204, he said no, actually, they ought to be above 150, and that his was 230.

This particular conversation was tangled around B2 and its relationship to iron or ferritin being released from the liver (all this stuff I'm not particularly good at!). Unfortunately, while I tolerate riboflavin in my Seeking Health B-Minus, I don't seem to tolerate it's active form of FMN very well--over time it does seem to degrade sleep by not enabling me to sleep sleep later in the morning (sometimes a necessity given my nights).

You've got COMT and MAO, but are both heterozygous or only the COMT? I read about your epic efforts with titrating LCF (which I haven't even tried yet), but you haven't had other issues of hyperness titrating up MeB12, AdoB12 and Folate, have you?

Thanks and take care.

 

[Johnmac]

Hi Kath,

Greg really knows his stuff. Yes, he corrected me on my iron levels too. Now I'm eating kidney & liver daily, & will be for about a year I think.

I'm also on 40 mg B2 daily, which has boosted the effects on the mB12 a lot, and apparently dispensed with the need for high dose m-folate.

He said standard B2 was fine - FMN, FAD, etc supps not needed.

I think everything of mine is homozygous, tho I'm not too good on SNPs, & have never used them for treatment.

Because it is so much easier to apply, I'm presently giving Greg's theory a go: take the B12s thru the oils; no need for much m-folate if you take enough B2 - 1-2 tabs a day is fine; forget the carnitine - you'll make your own if you do the above. Day 5 & my fatigue has been banished. But we'll see...

Yes, my daughter & I are both getting the wired effect from the B12 oils presently. I had it also hen I began my DIY transdermal B12s a few weeks ago - sleepless, euphoric. After a week it settled down, so I'm figuring the same will happen with the oils.

Presently, my daughter can feel an electrical 'buzzing' in her stomach area; yesterday she stayed awake till 5, then went out bushwalking. She was chronically fatigued a day or 2 before.

 

[Kathevans]

I'm also on 40 mg B2 daily, which has boosted the effects on the mB12 a lot, and apparently dispensed with the need for high dose m-folate.

A great post, thanks. It confirms something I'd been thinking and wondering about. I just upped my B-Minus to get at least 20mg of riboflavin and I seem to tolerate it just fine. Why was it that I couldn't tolerate the FMN? Well, no problem. I'm going to order some regular riboflavin and see how that goes. And the fact that it seems to lessen the need for high Folate levels--that would be fantastic, as, somehow, my sense is that it's the Folate that is giving me the buzz--as soon as I hit about 1600mcg a day--this because I hadn't raised my MeB12 recently when I first increased the Folate from 1200mcg/day which caused no head buzz, to the 1600mcg, which did. Hmmmm. But maybe if I just stick with this level of Folate for a week it will settle, too. Now, if I can just put up with all the other symptoms I go in and out of each day!

I like those oils a lot, myself, though the one I've ordered so far is the plain MeB12. It doesn't make me wired at all if I use the single-dose suggested. In fact I've wondered if it delivered enough for my body, but in order to ascertain that, I'll have to run a longer trial than the every other day I've been doing. And I also want to get up my levels of the ADOB12 because that has certainly had an effect on my pain levels, even at very low doses.

It's always heartening to hear someone's success story. Thanks for sharing.

 

[Johnmac]

I don't know much for sure - am in the middle of my experiment. But Greg's theory is that CFS is not a B12 problem, it's a B12 and B2 problem. So if you don't take the B2, you'll have huge folate demands in an attempt to make up for it. Which explains the high folate on the FP, paradoxical deficiency, et al.

I use the ado/methyl oil, + oral B2, & have accordingly dropped my folate intake - 1 or 2 tabs a day. Energy has been rising, but too early for definitive comments.

All the best...

 

[Kathevans]

I don't know much for sure - am in the middle of my experiment. But Greg's theory is that CFS is not a B12 problem, it's a B12 and B2 problem.

Very interesting. I certainly tested very low for riboflavin on my OAT test of a year ago. I'd been pretty much diary free for over a decade and have added that back in. So, you haven't found it to be the case that more B2 causes more folate deficiency symptoms, as Fred did?

And are you taking a basic B complex?

Thanks again...

And it just occurred to me that on the B2 I love you thread @Asklipia healed / had enormous success using primarily B2 and MK7, I think it was. She ran a months-long experiment and posted every month or more with updated improvements.

 

[Johnmac]

Good you're adding the B2 again Kath. I noticed a big jump in the B12's effect when I added B2 to the mix.

So far no folate deficiency symptoms & no symptoms from the B2 - but I've only been trying this approach a few days. And my B2 is barely above Fred's max anyway

Yes, I take the mutl-B recommended by Freddd.

Yes, B2 I Love You is an interesting thread (up to about halfway).

Very interesting. I certainly tested very low for riboflavin on my OAT test of a year ago. I'd been pretty much diary free for over a decade and have added that back in. So, you haven't found it to be the case that more B2 causes more folate deficiency symptoms, as Fred did?

And are you taking a basic B complex?

Thanks again...

And it just occurred to me that on the B2 I love you thread @Asklipia healed / had enormous success using primarily B2 and MK7, I think it was. She ran a months-long experiment and posted every month or more with updated improvements.

 

[Athene*]

I'm having iron deficiency issues now too, after 4 weeks on methylation. Only other problem was high potassium need. Now my RBC, Haematocrit and Transferrin Saturation are all lowered.

I have breathlessness on and off - often when falling asleep. I was the same when my adrenal function was very low. Could your adrenal function be low @goonie8473?

Last year my iron levels were fine. Does the methylation protocol lower iron for everyone?

I'm also more hypothyroid and hypo adrenal now - iron feeds the adrenals...

Could we all need copper? (refeeding issue as mentioned by @Kathevans above). I'm trying to get copper tests. Low copper lowers iron (low iron lowers adrenal function) = breathlessness etc...

 

[Johnmac]

I've never heard of the methylation protocol lowering iron. I think my deficiency was pre-existing.

According to the B12Oils guy, Greg, my ferritin should be 200+ - i.e. the existing normal ranges are wrong.

 

[Athene*]

Interesting @Johnmac. I'm on a Facebook B12deficiency Forum, and the Canadian moderator, who belongs to the British Pernicious Anaemia Society and writes academic papers for their conferences etc, insists that men should be 130 or so and women 90 or so, no matter what the Ferritin range is worldwide..... My Irish doc agrees. Irish ferritin range goes up to 300 (for some reason) so that's why I asked them all about this. Methyl B12 brought my ferritin down from 210 (which my doc & FB moderator said was high from 'inflammation') to 129 a few months ago. I was told this was good. And my other iron levels were good then too. Now I'm on high dose Mb12 etc, iron has gone down. I'm waiting to get my latest ferritin result.
Who do we believe? Isn't it frustrating when so many differing opinions are out there?
What do you think of the copper-refeeding-deficiency possibility?

 

[Johnmac]

Interesting @Johnmac. I'm on a Facebook B12deficiency Forum, and the Canadian moderator, who belongs to the British Pernicious Anaemia Society and writes academic papers for their conferences etc, insists that men should be 130 or so and women 90 or so, no matter what the Ferritin range is worldwide..... My Irish doc agrees. Irish ferritin range goes up to 300 (for some reason) so that's why I asked them all about this. Methyl B12 brought my ferritin down from 210 (which my doc & FB moderator said was high from 'inflammation') to 129 a few months ago. I was told this was good. And my other iron levels were good then too. Now I'm on high dose Mb12 etc, iron has gone down. I'm waiting to get my latest ferritin result.
Who do we believe? Isn't it frustrating when so many differing opinions are out there?
What do you think of the copper-refeeding-deficiency possibility?

I'll stick with Greg's 200+ for now, till it's proven wrong. He points out that the ranges vary widely from one country to the next, so they can't all be right.

I don;t know much about copper, though a recent copper deficiency (from too much zinc for pyroluria) did make me very faint - so that could have been low iron I guess.

Supplementing copper removed all the nasty low-Cu symptoms. One symptom - psoriasis - was dramatically improved (best in 40 years).

 

[Athene*]

Yes, it does seem daft that the ranges vary so widely, yet the threshold for 'normal' is supposed to be the same. I guess we need to go by symptoms...
Good to know about psoriasis improvement. I'm delighted for you and will pass that on to my husband!
Do you happen to know if regular doctors test Cu?

 

[Johnmac]

Yes, it does seem daft that the ranges vary so widely, yet the threshold for 'normal' is supposed to be the same. I guess we need to go by symptoms...
Good to know about psoriasis improvement. I'm delighted for you and will pass that on to my husband!
Do you happen to know if regular doctors test Cu?

The only other thing that's worked for my psoriasis is l carnitine fumerate - but I assume it's the fumaric acid component, as this is used in Europe on psoriasis.

I tried to get a copper test yesterday from my doc, & he declined to put it on the public tab - didn't think it was necessary. I imagine if I'd paid for it I could have got it.