Sudden shortness of breath- b12 malabsorption? potassium?

[Athene*]

The book Stop The Thyroid Madness was my guide for thyroid problems. Not well written, but the basic worldview helped me a lot.

Yes, I've seen what Fred said about B2. I have increased B2 from 20mg/day to 50 or 60, plus lowered m-folate by about two-thirds - & I've improved (so far - 10 days). My K demand has dropped rather than increased.

I was on T3 (20mcg/day) for a long time, but the Freddd Protocol allowed me to slowly taper off it. Also hydrocortisone (20 mg/day), and most recently DHEA. My energy is better than it was before - i.e. when I was on all the above. I think it was the FP, & now the new approach, which has many similarities.

My latest reading suggests that dementia is a B12 problem more than anything; indeed there are big similarities in the biomarkers for AD & CFS. Which presumably explains why I am brain-dead when fatigued: can't reason, can't remember anything. However, yes, by all means test for copper before plunging in. All I can tell you about Cu, really, is that a deficiency is very unpleasant.

That's amazing that you've been able to give up thyroid meds as well as adrenal meds! Yes, I read the STTM book too - very useful info, but in need of an editor! I was wary of the overly emotive title and statements too, but maybe I'm just too conservative. The book has helped a lot of people. I've read a lot about the b12/dementia link too. Hopefully we will avoid that particular affliction. I will watch your b2 story with interest, and hope it continues to work for you.
You know more about the methylation protocol than I do - I've only come to it recently - but would you not worry that the lower potassium demand might be a result of less cell building/repair since folate has dropped? But then again, if you're feeling good, that says a lot, and perhaps you've done enough cell building and repair already, having been on the FP for a good while, and so that's why you only now need low folate etc as maintenance along with the b2? I'm still learning about all this, but I'm really interested in your story because of the thyroid/adrenal issues too. They've been major problems for me for the last 16 or more years and I over focused on them through necessity (no help from doctors), but always felt there was something else going on...

 

[Athene*]

@Johnmac @Kathevans (Should I create another thread for this? Is it ok to post it here?).

I wanted to ask you two in particular about this - I found this discussion (youtube link below) on Riboflavin and methylation cycle and I would really value any input you guys might have. It's an eye-opener for me as I am on t3-only thyroid therapy with only a little NDT (natural dessicated thyroid). This discussion is Dr Ben Lynch with Alan Christianson and they quote an very interesting study that demonstrates that conversion of riboflavin to FAD is regulated by thyroxine (t4).

So then, if you have thyroid disorder (and this affects adrenals too), you need more FAD, but you can’t form it, so double trouble if you have thyroid and MTHFR issues....

...you need FAD to help MTHFR enzyme to function. So doesn't that mean that if you have a regular intake of riboflavin through diet and a working thyroid or exogenous thyroxine for thyroid disorder then you shouldn't need to supplement riboflavin or fmn because the thyroid does the conversion for you?

So anyhow Christianson (thyroid guy) says there’s an argument that it's thyroxine (t4) that is necessary, NOT t3-only therapy (despite the advice to take t3-only from many thyroid forums, naturopaths etc).

T3 only therapy may actually be a drawback. @Johnmac - could that possibly be why you feel better now you've dropped the t3 and are making your own thyroxine? (Just trying to get my head around all this).

Also interesting is that Christianson has a caveat about too much thyroxine (becoming HYPERthyroid) overdriving the methylation cycle because of too much FAD conversion causing too little homocystiene (just as bad as too much homocysteine)..

Anyhow, I'm now thinking I should reduce my t3-only therapy and re-introduce some thyroxine (t4), by adding back some Erfa (ndt). Hoping that will also help the adrenal issues. Does that sound like a good idea? I know you've both had adrenal and/or thyroid issues.

Note also the connection between bad MTHFR enzymes and thyroid cancer. Need to properly treat both thyroid and MTHFR issues. 'If you have ever had a thyroid problem, get an ultrasound if you have not already done so.' (Christianson). I was refused a scan...

Hope some of this might be of use to you guys. At the very least, we should keep a sharp eye on our thyroxine levels so that we're producing enough FAD from riboflavin. Wouldn't that be a smoother, more reliable process than ingesting riboflavin or fmn/r5p and possibly overdriving methylaton.. Is this why @Freddd suggests low b2? Am I completely missing something here?

Any thoughts welcome (if you do listen to it, bear with the intro chat....I don't know these docs' specific credentials, but the study they discuss seems sound)

P.S. Another point of interest is that all three of us have had low iron which can be a hypothyroid issue (thyroid needs adequate iron level to work, and vice versa - they're interdependent, one going down brings the other down) - even more reason to keep an eye on thyroxine...

 

[Johnmac]

You know more about the methylation protocol than I do - I've only come to it recently - but would you not worry that the lower potassium demand might be a result of less cell building/repair since folate has dropped? But then again, if you're feeling good, that says a lot, and perhaps you've done enough cell building and repair already, having been on the FP for a good while, and so that's why you only now need low folate etc as maintenance along with the b2? I'm still learning about all this, but I'm really interested in your story because of the thyroid/adrenal issues too. They've been major problems for me for the last 16 or more years and I over focused on them through necessity (no help from doctors), but always felt there was something else going on...

Re potassium etc: don't know. A bit more time will tell. Right now, I'm roughly back to where I was with the FP - maybe 65% normal energy. So if I improve from here, something good is happening; if not, maybe not.

 

[Athene*]

Excellent! I will be keeping an eye on you (if you don't mind!). Good luck with this

 

[Kathevans]

@Athene Despite my low adrenal function, my thyroid (at least a year ago, though it may have been re-tested with a recent blood draw for which I haven't gotten the results) was within the normal range--though I know you're saying that tests often aren't reliable. The tests done included:
Thyroid Peroxidase Antibodies (TPO) <3.00IU/mL where it ought to be <5.61
Thyroglobulin Antibodies <3.00 IU/mL where it ought to be <4.11
TSH 2.27 uIU/mL in a range of 0.40-3.98
Free T3 2.8 pg/mL in a range of 2.0-3.9
Free T4 1.10 ng/dL in a range of 0.70-1.48

But I do know that Dr. Greg, as @Johnmac calls him, recommends taking either selenium or eating several Brazil nuts each day (I've been eating the nuts!) With regard to its use in thyroid function: selenium is also essential for the conversion of T4 to T3, as deiodinase enzymes (those enzymes that remove iodine atoms from T4 during conversion) are selenium-dependent. (http://chriskresser.com/selenium-the-missing-link-for-treating-hypothyroidism/). (Though, of course your query above seems to relate to what treats/gives you more the T4 and not having watched the video yet, I don't know if there are recommendations to increase this)

My own adrenal self-treatment has included very little, but addressing these things: occasional licorice as DGL, eating a bit of food in the morning, usually some yogurt or kefir and a bit of fruit. For about 15 years I fasted in the morning, which apparently isn't good for the adrenals. That was on the advice of (I hesitate to admit) my Native American healer (he did attend UC San Diego and studied biochemistry with Linus Pauling!). And speaking of Linus Pauling, I've tried to add extra Vitamin C to my regimen.

But right now, my regimen is falling apart...

Athene, as to your questions about taking the leap to high dose Folate, the problem is I get such wired symptoms on just 1600-2000 mcg, I think I might twirl away if I went higher. It's the reason I was trying to 'treat' either my MAO++ with the B2 or my COMT++ with more magnesium.

Over the last couple of months as I've tried to keep the Folate and MeB12 somewhat level even as I raised B2, I've experienced more and more of a neurological symptom that I keep thinking is a Folate deficiency. It's not just the tight, even painful trapezius and neck muscles, it spreads up into my face so that my facial muscles seem also to be tight, as if I'm grimacing. After my experimentation with AdoB12 (which you and I both recognize as yet another driver of folate needs, right!) I'd wake in the night feeling not just this tightness all around my head, but pins and needles in my neck and an internal feeling I don't know if I can describe as other than, "Eeeewwwwwwwww!" Just horrible strung out, tightness, wired. When this happened and my go-to drug of choice, valium (at the very low 2mg dose), didn't even work, I felt despair. That night I tried giving myself another 100mcg of Folate, slept for 2 hours and was up again with the "Eeww!" etc. I just had to sit it out.

All week, I've been dropping things, my folate, the B-Minus B complex, and this morning, even using the Squirt of B12 Oils put me in this place for several hours. Yuck. I obviously need the Folate, but I'm having some horrible time metabolizing it. (I actually had this noted on either my NutrEval or Oat Test, though for the moment I don't recall why).

I'm thinking maybe if I go back to go and try to work on B2 alone, to build up those stores so that I might not, as Dr. Greg says, require so much Folate, then I might be able to move forward more constructively.

Your story is so heartening, Athene, and yours is heading in that direction, Johnmac. I long to be headed in that direction. But for the moment, I just want to feel comfortable in my skin.

(Athene, as to the Thyroid stuff, you might also want to post this on a Thyroid thread--I know @Gondwanaland has spoken of these issues and I believe deals with them. She is very knowledgeable and has a greater capacity for scientific understanding than I do!!)

 

[Athene*]

Hi @Kathevans Sorry to hear you're having difficulty. I'm still up and down - my thyroid and adrenals have taken a hammering since this all started 15 years ago and I don't think I'm going to be able to reverse the damage at this stage like Johnmac - he was able to come off thyroid & adrenal meds. Maybe it depends on how long one has been ill/undiagonosed with this strange illness of ours.

I wish I could say something that would help you. At least your thyroid function is better than mine! My t3 is a miserable low - just inside range. On all the thyroid forums I've been on over the years the accepted range for Free t3 is that it should be in the top quarter of the range. Yours is just about in the middle - so I guess keep an eye on it. And keep an eye on the iron too? I wonder if taking b2 will help both of these things for you. @snowman suggested maybe taking FMN on another thread, to help with thyroid issues, but we're still trying to work it out and are hoping somebody well versed in chem/biochem will come along and comment. I wonder why you didn't do well on FMN? Could it be to do with what Dr Christianson said on youtube discussion about too much FAD conversion causing a problem with overdriving methylation resulting in too little homocysteine?

The only other thing I noticed about your situation is that you take less potassium than I and some others do. I really feel ill without high doses of it (for now)...

 

[Kathevans]

@Athene* Thanks for your kind words. I feel a little more centered today...am still sitting in bed at nearly 10 a.m. here, trying to be gentle with myself. I found the other thyroid post you mentioned and wish I had something to add to it. But like you I have so little understanding of bio-chemistry- and, in fact a still somewhat negative resistance to it given a PhD Science father who tried to push all his kids into the sciences!

But I'm trying. I've been re-reading some of the 'B2 I love you' thread, and there is a clear connection between iron levels, or perhaps ferritin and B2, and I may concentrate on that. In a small study mentioned, those taking B2 supplementation alone were able to increase their stores, while those who took it in a B complex weren't, or perhaps didn't have as strong results. And as I've mentioned before, the B2 ought to help the MAO++. A woman on the thread, Asklipia, posted her progress regularly and had some ups and downs over the first couple of months, so perhaps it is, as all things with this condition, a matter of patience.

The other thing I've been drawn to, partly by a sister who isn't well, is the issue of mitochondrial repair on this thread: http://forums.phoenixrising.me/index.php?threads/reverse-mitochondrial-damage-101.28175/

I know that Sherpa, for example, had very good results beginning with NT Factor, followed my B2 supplementation. And I want to believe that healing at any age is possible for us. Currently I understand very little about lipids, but know they are essential for the body's healing.

I do believe that when we have these moments of extreme imbalance, it is our body trying to tell us something. Something in there is crying, or just screaming! And I'm thinking again of Fred's refeeding syndrome and that it's possible that I have greater need for something other that simply MeB12 or Folate at this moment. It seems to be true that increasing B2 stores lowers the need for Folate (precisely because it helps to utilize what folate there is!)' and I think I skimmed something similar in the mitochondrial thread--that is, that healthy mitochondria require less of the methylation supps.

I believe that the guy who started the mitochondrial thread, Radio, has had great success with his discoveries. I think I've read that on the forum. In any case I'm ready to believe it!

As to your potassium suggestion, I have been thinking about it, and I've been traveling this road long enough to know that it's possible. I was having a look at the terrific potassium thread this morning: http://forums.phoenixrising.me/index.php?threads/warning-low-potassium-is-dangerous.14410/page-8 and musing on my levels. I will try raising it by another 300 mg today to see if that helps-- though at this point I've lowered both theMeB12 and Folate, but still, we'll see. And I'll certainly keep it in my arsenal for future reference. I know I'll come back this way again, later if not sooner.

Again, many thanks. I've thoroughly enjoyed (not to mention learned from) our exchanges on this thread...

Have a lovely day...

 

[Johnmac]

Kath, the only thing that's made me profoundly uncomfortable in my own skin (your phrase struck a chord, as it's the one I used to use) was l carntine fumerate (LCF). You're not taking that are you?

Has Greg had a look at your OAT?

 

[Athene*]

@Kathevans Just to tell you - I did go back to introducing some thyroxine after all, three days ago now (I am now taking NDT, instead of t3-only). As you know, thyroxine is involved in converting b2 to active b2 (FAD), and the result has been fantastic for me. Fingers crossed, but the awful IBS symptoms (my low folate symptom) I was having from overdoing things for the past week, vanished within a couple of days of adding the thyroxine (from the NDT), and I no longer need to keep increasing mfolate.

Your mention of mitochondria made me think about how the thyroid is so important in relation to mitochondrial repair. Those ranges I mentioned (where your t3 was mid-range) are not the ones used by doctors who tend to say anything within the range is 'normal'. The ranges I use are from the STTM Facebook forum mentioned earlier - and the book of same name. It's based on the experience of thousands of people with thyroid disease and their response to treatment. I find those ranges to be closer to the real picture than what doctors advise as 'normal'.

For me, I really hope now I can continue to raise my t3 levels, with the help of the NDT and other methylation supplements. I've even managed to have less hydrocortisone today and am really hoping I can come off that eventually too...Today was one of the best days I've had since beginning the methylation protocol and I'm so relieved because I was beginning to need even more folate, and now I don't.

I really hope you get on the right track soon x

 

[Athene*]

PS @Kathevans It would be great if you could tag me later sometime to let me know how you're getting on with the b2, if that's the road you choose to stay on. I know from experience that my current phase of energy could vanish again (Aarrgh!). So far so good. I hope the thyroxine improves my iron too, but I'm keeping any eye on the b2 situation.

Thanks again for alerting me to all this in the first place

 

[aquariusgirl]

Johnmac :can you talk about yr Cu deficiency?

 

[Johnmac]

Johnmac :can you talk about yr Cu deficiency?

Sure. I had 150mg zinc a day for a while - scaling down to 100 then 50 - over 6 months or so. That was excellent in combating pyroluria - anxiety vanished; psoriasis reduced.

But unhappily I ended up with other rather unpleasant symptoms: pitted nails, raging psoriasis, irritability, fatigue, anemia, & slightly impaired co-ordination. I worked out that that was copper deficiency; began copper supplements; & the symptoms abated.

Indeed the psoriasis (which I've had for 42 years) is fading away entirely right now. Dr Walsh suggests psoriasis can be caused by zinc deficiency, too much copper, copper deficiency, & above all is related to the Cu/Zn ratio. So taking enough of both seems to be optimal for me: I've never supplemented Cu before.

 

[Kathevans]

Kath, the only thing that's made me profoundly uncomfortable in my own skin (your phrase struck a chord, as it's the one I used to use) was l carntine fumerate (LCF). You're not taking that are you?

Greg said that he saw several indications that my B2 was low on the OAT Test I forwarded to him, but the only one he mentioned in his notes to me was high Glutaric Acid, which in a range of .04-.36 was very high at .55. Actually, on second perusal, I tested high for 3-Methylglutaric and at the high end of 3-Methylglutaconic, which also seem to call for higher levels of B2 (40-80/day), although the other supplement indicated was L-carnitine! My high Quinolinic and Suberic Acids also indicate supplementation with L-carnitine--so where does that put me?! Still haven't tried that yet!

Another whammy comes with my high Uracil, which may indicate 'a deficiency of folic acid or in folic acid metabolism.' So that's it for OAT Results--of a year ago. As we know, the constant driving of the methylation cycle can deplete nutrients further, so I don't think it's wong-headed for me to try to address the B2 shortage. I still have the facial symptom--which may be nothing more than a further or extended tightening of the trapezius muscles. Interestingly, there is a clear problem with a tightening of the fascia in my body as I have inherited Dupytrens contracture, a tangling of the fascia in my hands, especially the left, a genetic anomaly shared by my brother, passed down by my father, and spread throughout his family--a cousin has it, too.

The Dupytrens has been more active over the last few years, and as I increased my methylation protocol, the right hand, as well as the left, began to be affected. So whatever I was doing, it hadn't stopped the symptom. Oh life.

As to your copper/zinc balance, I've been leery of taking more than about 25mg of zinc, afraid of pushing myself into the low copper area. I actually did have my copper tested several months ago and that's going ok for me. To help my copper/zinc levels, along with the 3 Brazil Nuts for my selenium, I daily munch a combo of sunflower and pumpkin seeds. One of them is high in copper, the other in zinc (though for the moment I forget which is which!).

@Athene* As to your success with NDT, hurray! I hope it continues to work for you. It's interesting to hear that it seems to affect the levels of folate you need by improving your FAD levels and thereby effectively increasing the B2 you have in circulation. For the past few years I've had on and off issues with heart irregularities--palpitations, pvcs, a few episodes of a-fib (prior to getting on the methyl-supps) and I strongly suspect this relates to folate metabolism. At its worst, I was taking folic acid and no meB12--this is before I so very thankfully ran into Phoenix Rising and began to try to sort things out. Way back then, my doctor said that because of my heart issues there was no way she'd put me on thyroid meds--that was when I mentioned the possibility of needing them. So I'm relieved that at least to this point, my thyroid doesn't seem to be the problem.

For now I'm going to try to focus on the B2 and see if I can achieve some of the favorable results you're coming up with. And @Johnmac, too. We are each a mystery waiting to be unravelled. I imagine that someday in the not-too-distant future we'll give a drop of blood, it will be fed into a computer, and the exact formulation of whatever supps, diet, etc we need will be delivered in a read-out. Maybe we can at least hope for this for our children...

Athene* I'll keep you posted; you do the same!

 

[aquariusgirl]

Ugh so complicated ...wondering if B2 goes low because of excess iron?

 

[snowman]

@Kathevans, I like your idea of doing B2 first. That may raise carnitine serum and tissue levels on it's own bit by bit rather than a sudden surge from supplementing carnitine. http://www.sciencedirect.com/science/article/pii/S0271531787801380

 

[Kathevans]

Ugh so complicated ...wondering if B2 goes low because of excess iron?

Hmmmm. That's one more thing I don't have the answer for, myself. I've never been high iron!

 

[Kathevans]

Could it be to do with what Dr Christianson said on youtube discussion about too much FAD conversion causing a problem with overdriving methylation resulting in too little homocysteine?

You know, @Athene* this is a possibility I'll look into as I explore the B2 angle. My homocysteine was tested at 4.9 which may be a bit on the low side. Good thought!

 

[Kathevans]

@Kathevans, I like your idea of doing B2 first. That may raise carnitine serum and tissue levels on it's own bit by bit rather than a sudden surge from supplementing carnitine. http://www.sciencedirect.com/science/article/pii/S0271531787801380

It sounds here as if both B2 and B6 help with Carnitine levels. I've been thinking again of a low-level B-complex like the B-Minus, with some extra B2 slowly titrated up.

 

[Athene*]

Greg said that he saw several indications that my B2 was low on the OAT Test I forwarded to him, but the only one he mentioned in his notes to me was high Glutaric Acid, which in a range of .04-.36 was very high at .55. Actually, on second perusal, I tested high for 3-Methylglutaric and at the high end of 3-Methylglutaconic, which also seem to call for higher levels of B2 (40-80/day), although the other supplement indicated was L-carnitine! My high Quinolinic and Suberic Acids also indicate supplementation with L-carnitine--so where does that put me?! Still haven't tried that yet!

Another whammy comes with my high Uracil, which may indicate 'a deficiency of folic acid or in folic acid metabolism.' So that's it for OAT Results--of a year ago. As we know, the constant driving of the methylation cycle can deplete nutrients further, so I don't think it's wong-headed for me to try to address the B2 shortage. I still have the facial symptom--which may be nothing more than a further or extended tightening of the trapezius muscles. Interestingly, there is a clear problem with a tightening of the fascia in my body as I have inherited Dupytrens contracture, a tangling of the fascia in my hands, especially the left, a genetic anomaly shared by my brother, passed down by my father, and spread throughout his family--a cousin has it, too.

The Dupytrens has been more active over the last few years, and as I increased my methylation protocol, the right hand, as well as the left, began to be affected. So whatever I was doing, it hadn't stopped the symptom. Oh life.

As to your copper/zinc balance, I've been leery of taking more than about 25mg of zinc, afraid of pushing myself into the low copper area. I actually did have my copper tested several months ago and that's going ok for me. To help my copper/zinc levels, along with the 3 Brazil Nuts for my selenium, I daily munch a combo of sunflower and pumpkin seeds. One of them is high in copper, the other in zinc (though for the moment I forget which is which!).

@Athene* As to your success with NDT, hurray! I hope it continues to work for you. It's interesting to hear that it seems to affect the levels of folate you need by improving your FAD levels and thereby effectively increasing the B2 you have in circulation. For the past few years I've had on and off issues with heart irregularities--palpitations, pvcs, a few episodes of a-fib (prior to getting on the methyl-supps) and I strongly suspect this relates to folate metabolism. At its worst, I was taking folic acid and no meB12--this is before I so very thankfully ran into Phoenix Rising and began to try to sort things out. Way back then, my doctor said that because of my heart issues there was no way she'd put me on thyroid meds--that was when I mentioned the possibility of needing them. So I'm relieved that at least to this point, my thyroid doesn't seem to be the problem.

For now I'm going to try to focus on the B2 and see if I can achieve some of the favorable results you're coming up with. And @Johnmac, too. We are each a mystery waiting to be unravelled. I imagine that someday in the not-too-distant future we'll give a drop of blood, it will be fed into a computer, and the exact formulation of whatever supps, diet, etc we need will be delivered in a read-out. Maybe we can at least hope for this for our children...

Athene* I'll keep you posted; you do the same!

Thanks @Kathevans I'll be thinking of you and I'm really glad Greg is supporting you. Sounds like he knows his stuff. Glad you discovered re folic acid too. When you think of the mistakes any of could potentially make...doesn't bear thinking of. For goodness sake, how are we supposed to know? We're lay people struggling to cure ourselves, without much help from doctors (at leas traditional ones). I really hope the b2 works for you. @snowman suggested FMN might work, (see page 2 on this thread):

http://forums.phoenixrising.me/index.php?threads/thyroid-function-labs-may-lie.18227/page-2

'One strategy may be to supplement FMN, that way skipping the first step to preserve more T3 & T4 for the 2nd step to produce FAD. Unless you've had your thyroid surgically removed, it still does make some T4 (and other hormones), so it may be enough to cover your needs.'

but I know you've tried that. I'm staying low on the zinc too for fear of copper problem. You're right about those induced insufficiencies. We need to keep an eye on them. I wish we could test for them ourselves!

PS Have just seen you've already discussed b2 & FMN with snowman above...

 

[Kathevans]

@Athene* Just for the moment--and I hope longer!--I seem to be able to tolerate riboflavin as r-5-p, which the body then converts to either FAD or FMN. It may be that because the Folate cycle uses FAD, this works for me where the FMN didn't. We shall see.

I am still very sensitive to it (read: at low doses it can destroy my sleep: I'm thinking I may need to take some B6 with it as according to Rich Vank, the two work in tandem). Today I only took 9 mg of r-5-p. I recall reading on the 'B2 I love you' thread, that B2 can benefit from using 5-10mg of manganese. But, once again, I can't recall why! I'll have to order some and give it a try.