Having a major crash seemingly from adding a few mcg of Metafolin to my protocol earlier in the week. Muscles are unbelievably fatigued and also painful. I knew I don't tolerate any of the folates, but I thought I would try again in case the TMG I recently added would make a difference (serum B12 and folate both measure high). I've been taking potassium caps and drinking potassium broth, but no improvement in the fatigue. What likely happened, and is it possible to reverse this?
THE STAGES OF METHYLATION AND HEALING
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Freddd
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Please describe EXACTLY what you mean by major crash, details of symtpoms changes please, so things will have some perspective. Thankyou.
Hi Fred, my entire body and especially muscles are severely fatigued, really feel the weakness going from sitting to standing, increased pain even at rest, much less endurance, sore joints - it all feels very inflammatory, or like when there's increased oxidative stress. Also having difficulty speaking at normal volume because of lack of energy and the energy drain afterward, there's often a feeling of not having enough O2, along with increased brain fog and increased depression (which always happens with me with folate). Before this, I could go up and down stairs a couple times a day, do activities, walk , etc. Now stairs would be out of the question, walking distance greatly reduced, overall increased fatigue and muscle pain.
Freddd
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Exactly what brands and kinds and quantities of b12 and folates are you taking. Are you taking L-carnitne fumarate or ALCAR by trial? Are you taking all the usual vitamins and minerals and fats?
I see several possibilities which could be eliminated by those answers. In a general way I would say that as soon as 600 possible reactions all started trying to happen at once, you almost instantly went into induced deficiencies. I recognize all your reactive symptoms personally. If you have posted this please show me where. I have a terrible memory for who posted what as I just read too much every day. It all goes into the stew pot.. also, if you go to the pinned active b12 basics there is a list of symptoms and maybe farther down a revised list. There is a group of 10, I believe, specific variations of muscle pains. Perhaps copy all of them and rate the muscle pain and rate each one from 0 or 1 to 5. That would help.
I see several possibilities which could be eliminated by those answers. In a general way I would say that as soon as 600 possible reactions all started trying to happen at once, you almost instantly went into induced deficiencies. I recognize all your reactive symptoms personally. If you have posted this please show me where. I have a terrible memory for who posted what as I just read too much every day. It all goes into the stew pot.. also, if you go to the pinned active b12 basics there is a list of symptoms and maybe farther down a revised list. There is a group of 10, I believe, specific variations of muscle pains. Perhaps copy all of them and rate the muscle pain and rate each one from 0 or 1 to 5. That would help.
I totally understand about not keeping everything in memory, there are simply too many people doing different things.
The only folates I was taking are in 1 cap of B-Right per day. As I just mentioned in another thread, I had gone off the B-Right a few months ago when learning about the folate problem, but almost immediately felt worse. So I started up again to use up the bottle, and have been taking it for the past about 2 months and been fine with it. The 5mthf I added was 2 tiny crumbs of Solgar Metafolin, probably (guessing) about 10mcg or less per dose on 2 consecutive days. I don't take carnitine because of hypothyroidism, and only occasionally take ALCAR because even super tiny amounts ramp up my brain too much and make me feel worse. I take vit. C, D, E, and the B-Right, co q-10, zinc, cal-mag, selenium 200-400mcg, ribose, and get n-3 and 6 from fish (sardine), olive oil and avocado. Things weren't great with the B-Right - was still trying to find an alternative with good B ratios and no folates - but I was definitely better on it than without it. Much worse now after the Metafolin, though. I think Malachy might be right in the other thread that it overloaded me, but the question is what to do about it. If I just wait it out do you think it will chill and revert back to pre-Metafolin, or could I have done some permanent damage?
Freddd
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What b12 are you taking, how much and how?
I understanding the a good chunk of what could be going on but I have to know about b12, please.
What is it that you think will happen if you take carntine, and ALCAR is carnitine because of hypothyroid. I am hypothyroid too? So what?
It appears to be a couple of induced deficiencies. However, I have insufficient data. How much additional folate to the B-right. A new one or the older variety of B-Right? How much of what folates does it have in it?
It's unlikely you have done any damage yet. Right now you are looking at malfunction which appears quickly correctable.
Describe what carnitine does in even small doses?
Are you a vegetarian?
I understanding the a good chunk of what could be going on but I have to know about b12, please.
What is it that you think will happen if you take carntine, and ALCAR is carnitine because of hypothyroid. I am hypothyroid too? So what?
It appears to be a couple of induced deficiencies. However, I have insufficient data. How much additional folate to the B-right. A new one or the older variety of B-Right? How much of what folates does it have in it?
It's unlikely you have done any damage yet. Right now you are looking at malfunction which appears quickly correctable.
Describe what carnitine does in even small doses?
Are you a vegetarian?
Hi Freddd,
Interesting point.
I remember my Genova Diagnostics NutrEval in winter 2010-2011 (even after I was save with hormonal support in 2009 from certain (not kidding) death) showing lowish front end of the Krebs cycle in the first two stages, really unbelievably high AKG, and undetectable everyone after that step along with a glucose level that was in the high 60s. Not fun.
I had minor improvements taking creatine pyruvate and D-ribose but I don't think the balance really changed. I did get some pain reduction going to no gluten and dairy in 2011 and upping D-ribose from 5 grams to 15 grams / day in early 2012.
But in retrospect it seems somehow I had get adb12 going, but then start stacking the two primary routes into the Krebs cycle to get something (probably still marginal) up and running with the Krebs cycle.
The order over the last seven months (most changes in last three months) was like this: adb12 introduced, adb12 increased, better dosing of T3 (absorption concerns), doubling adb12 to 1/4 Source Naturals daily, calcium pyruvate added, B5 added, even better dosing of T3, B1 added, molybdenum added, mag-malate added, biotin added, calcium pyruvate increased, B1 and B5 at 100 mg, biotin doubled to 2000 mcg, D-ribose spread out more over day, R-ALA added, even better dosing of T3, doubling vitamin E to 800 IU (latest change two weeks ago).
At the start adb12 really made me tired, now only slightly fuzzed (in a good way maybe). In the past biotin, B1, and alpha lipoic acid all made me very fatigued or feeling ill even. B5 would drive me to insomnia (like carnitine used to). Only B2 and B3 were well tolerated.
Total Cytomel is actually 25% lower than at start of cycle, but I take more than 50% now on empty stomach in morning which increased absorption. To be honest the biggest jumps in terms of recent positive clinical effects have been the shifts in taking the T3. Followed by R-ALA, calcium pyruvate, adb12, and the B5 and B1. The abb12 effects were in many ways more subtle but at the same time pretty profound. Like the difference between endurance in in a long distance race vs a burst of energy in a sprint. Does that make any sense?
I think you hit the nail on the head here. In fact I think nothing in the body functions well with a blocked Krebs cycle.
P.S. Is the Anabol Dibencoplex a better choice than Source Naturals if going to use daily? My only concern it is not a sublingual per se, so doesn't most of it drain into the gut? Little confused here what is better option. The thread I started on this topic never really gave me a good answer as the thread soon veered of course
We are in total agreement about how to approach glutathione. The body needs to be in charge of making it, not forced to do so. Also makes sense that such forcing will treat the diffusion driven B12s as toxins and flush them much to the patient's dissatisfaction. Those glutathione IVs I mentioned drove me into the hospital (not fun).
My only point was most delivery mechanisms end up giving you the constituent amino acids artificially anyways since the final barrier is not the GI lining but the actual cell membranes within which most of the beneficial activity would have to take place anyways. I personally think a lot of the glutathione treatments being pushed border on harmful quackery.
Btw have you considered a buffered Na ascorbate instead of ascorbic acid? The ascorbic acid is at best 20-25% absorbed into the bloodstream (if you are lucky) while the rest reacts with calcium, magnesium, sodium and potassium ions in the GI tract and gets sent down as buffered mineral salts to the colon where it draws water to flush it out. The "bowel tolerance" criteria is simply how much of this effect can your guts withstand. On the other hand a buffered Na ascorbate is >90% absorbed into the bloodstream and with a longer half-life (so serum levels of ascorbic acid are raised for longer periods of time for same level of intake).
Adreno turned me onto this a couple of months ago, and I have been able to drop from 8-10 grams ascorbic acid to 3-4 grams Na ascorbate. I can't specifically tell how big an impact it alone has made given other changes but it seemed to be an improvement.
Just a thought.
Hi dbkita,
I make my own liposomal Vitamin C, to avoid avoid the GI reaction issues.
I am hypothyroid also. My problem with replacement hormones is that I get a histamine reaction to T4.
Right now I can tolerate around 60 mcg of T4, and so I backfill my thyroid needs with T3. For 6 months I
tried 80mcg for T3 only (cynomel, Mex.) What happened to me on T3 only was interesting. All histamine problems
stopped. My free T4 was really low, of course, but my free T3 was only in the lower end of range also. I loss 20 lbs
of muscle and bone. My 4x saliva cortisol levels were 120% of maximum range, and my DHEAs, TT, FT, and E2 were at the bottom of range. T3 only was a disaster for me. Your need for DHEA sounds like T3 is impacting your adreals, as it did mine.
I make my own liposomal Vitamin C, to avoid avoid the GI reaction issues.
I am hypothyroid also. My problem with replacement hormones is that I get a histamine reaction to T4.
Right now I can tolerate around 60 mcg of T4, and so I backfill my thyroid needs with T3. For 6 months I
tried 80mcg for T3 only (cynomel, Mex.) What happened to me on T3 only was interesting. All histamine problems
stopped. My free T4 was really low, of course, but my free T3 was only in the lower end of range also. I loss 20 lbs
of muscle and bone. My 4x saliva cortisol levels were 120% of maximum range, and my DHEAs, TT, FT, and E2 were at the bottom of range. T3 only was a disaster for me. Your need for DHEA sounds like T3 is impacting your adreals, as it did mine.
Hi Fred, no, not a vegetarian. I'm not taking any B12 now except a small amount (less than 1/4 cap) of Anabol Naturals every couple of days, and the 100mcg mb12 that's in the B-Right. When I was serum deficient a year or two ago I started taking the Jarrow mb12 sublinguals, which successfully pushed my levels above normal. I stopped using the Jarrow following the reports that it lost its effectiveness, but my serum levels on just the B-Right remained as high as before, so I didn't add anything else yet. Was thinking of getting the Enzymatic Therapy to try, but then this happened with the Metafolin so I put that on hold for now until I can get this sorted out.
The B-Right now has 400mcg of folate as folic acid and "Quatrefolic," but they don't specify how much of either is in the mixture. The amount I added to that was an 800mcg Solgar Metafolin tab cut into quarters with a pill cutter, and then I broke two fragments off of one of the quarters for what I would estimate to be about 25-50mcg each? Hard to guess, really, but I'd say that's in the ballpark. Less than 100mcg, that's certain.
Carnitine is a treatment for hyperthyroidism, so I didn't think it made sense to take it if one is already hypothyroid. Could perhaps in fact even be dangerous. ALCAR seems to have different effects, mostly in the brain, and I only tolerate a very small amount of that without feeling really wired and then burned out. When I say small amounts, I mean like 1/10th or 1/20th of a capsule, if not less. Don't have the dosage offhand b/c it's been so long since I've taken it. It just ramps up the mitochondria way too much in me, I can't really tolerate it.
Btw, in reading dbkita's posts, I'm reminded that I've been ramping up the C lately, also. I was at about 10g buffered C, then started to run out so cut back until the new batch arrived. I didn't want to go cold turkey down to zero, but I was running out fast and the pkg still hadn't shown up, so I was taking only about 3-4g from 10 for a couple of days. I wondered if maybe that did something, caused some kind of rebound deficiency, but since then I've been back up to 10g and it hasn't seemed to made a difference. Just thought I'd mention that because one thing I've been concerned about is the high C actually depleting glutathione. Didn't Rich or someone mention something about higher levels of C requiring more glutathione to recycle the C? Unclear on what current opinion is on that.
citation:
Ann N Y Acad Sci. 2004 Nov;1033:158-67.
Effects of carnitine on thyroid hormone action.
Benvenga S, Amato A, Calvani M, Trimarchi F.
Source
Sezione di Endocrinologia, Dipartimento Clinico Sperimentale di Medicina e Farmacologia, University of Messina School of Medicine, 98125 Messina, Italy. s.benvenga@me.nettuno.it
Abstract
By experiments on cells (neurons, hepatocytes, and fibroblasts) that are targets for thyroid hormones and a randomized clinical trial on iatrogenic hyperthyroidism, we validated the concept that L-carnitine is a peripheral antagonist of thyroid hormone action. In particular, L-carnitine inhibits both triiodothyronine (T3) and thyroxine (T4) entry into the cell nuclei. This is relevant becausethyroid hormone action is mainly mediated by specific nuclear receptors. In the randomized trial, we showed that 2 and 4 grams per day of oral L-carnitine are capable of reversing hyperthyroid symptoms (and biochemical changes in the hyperthyroid direction) as well as preventing (or minimizing) the appearance of hyperthyroid symptoms (or biochemical changes in the hyperthyroid direction). It is noteworthy that some biochemical parameters (thyrotropin and urine hydroxyproline) were refractory to the L-carnitine inhibition of thyroid hormone action, while osteocalcin changed in the hyperthyroid direction, but with a beneficial end result on bone. A very recent clinical observation proved the usefulness of L-carnitine in the most serious form of hyperthyroidism: thyroid storm. Since hyperthyroidism impoverishes the tissue deposits of carnitine, there is a rationale for using L-carnitine at least in certain clinical settings.
Ann N Y Acad Sci. 2004 Nov;1033:158-67.
Effects of carnitine on thyroid hormone action.
Benvenga S, Amato A, Calvani M, Trimarchi F.
Source
Sezione di Endocrinologia, Dipartimento Clinico Sperimentale di Medicina e Farmacologia, University of Messina School of Medicine, 98125 Messina, Italy. s.benvenga@me.nettuno.it
Abstract
By experiments on cells (neurons, hepatocytes, and fibroblasts) that are targets for thyroid hormones and a randomized clinical trial on iatrogenic hyperthyroidism, we validated the concept that L-carnitine is a peripheral antagonist of thyroid hormone action. In particular, L-carnitine inhibits both triiodothyronine (T3) and thyroxine (T4) entry into the cell nuclei. This is relevant becausethyroid hormone action is mainly mediated by specific nuclear receptors. In the randomized trial, we showed that 2 and 4 grams per day of oral L-carnitine are capable of reversing hyperthyroid symptoms (and biochemical changes in the hyperthyroid direction) as well as preventing (or minimizing) the appearance of hyperthyroid symptoms (or biochemical changes in the hyperthyroid direction). It is noteworthy that some biochemical parameters (thyrotropin and urine hydroxyproline) were refractory to the L-carnitine inhibition of thyroid hormone action, while osteocalcin changed in the hyperthyroid direction, but with a beneficial end result on bone. A very recent clinical observation proved the usefulness of L-carnitine in the most serious form of hyperthyroidism: thyroid storm. Since hyperthyroidism impoverishes the tissue deposits of carnitine, there is a rationale for using L-carnitine at least in certain clinical settings.
Lou
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It's probable I'm not going to be of much help here other than suggestion of risking twelve or so bucks and see if the switch helps you. Please don't take that as me being short with you, but folapro was used years ago when knew even less about methylation and it seemed associated with rapid rise in bp and feeling worse with no recognizable healing effect that I got initially with acitve protocol.
adreno
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FolaPro is Metafolin, exactly the same as Solgar. I would be very surprised if there were any discernible difference between the two.
Lou
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Fair enough, so some other factor must have been involved that somehow got eliminated between time of taking folapro and the start of Metafolin. Then, too, we're all different with varying degrees of responses to some of these supplements.
Xara
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After B12 supplementation serum levels are normally being pushed above normal, over 1,000. There would be something amiss if the levels would not sky rocket. High serum levels after B12 supplementation do not say a thing about whether you have had enough B12, all it says is: you have been supplementing. Period. After B12 supplementation the B12 serum level - no matter how high - does not say a thing about the amount of B12 in the tissues, in the tissues it could still be very low.
In case of a B12 serum deficiency, one may not stop with B12 supplementation unless the cause of that B12 deficiency is known and unless that cause has been treated succesfully - no matter how high the B12 serum level is. One must look at the symptoms, not the serum level, to decide whether one can lower or even stop the amount of B12 taken.
Taking lots of folates when having a B12 deficiency is NOT good.
What was your serum B12 level two years ago if I may ask?
1/4 capsule of AN and 100mcg ofmB12 as a sublingual isn't much when having an untreated B12 deficiency.
Again: you serum level does not say a thing anymore.
Do you have typical B12 symptoms? Look at the thread about the B12 documentary please.
Saying this to you, it seemed to me it could not wait,, but sorry, I am in a hurry. I hope I made some sense here. Good luck to you.
I was diagnosed with adrenal fatigue and high reverse T3 some 5-6 years ago and was prescribed hydrocortisone, florinef and eventually ended up on t3 only. As soon as I began to get some B12 into my system my need for florinef and hydrocortisone evaporated. It took Freddd's active B12 protocol to get me in shape to go off T3 and back onto natural dessicated thyroid hormone. Although lab work got me into those diagnoses, lab work did not get me off them. I did that by how I feel.
When I took cynomel, I was on 87.5 mcg per day. 75 mcg seems on the low side for someone who is 6'2", but we are all different. Also, when I was taking T3 only, my SHBG (sex hormone binding globulin) was very high, out of range on lab work, which they say causes a functional deficiency of sex hormones and can cause muscle and bone loss.
B12 deficiency and hypothyroidism may be following a chicken-egg-chicken pattern. One leads to the other which in turn leads back to the first.
Freddd
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HI Jeffrez,
Have you ever made a cake from scratch, not a mix? Have you made some really good homebrew beer? Or Homemade wine or meade or even hand kneeded bread. These all take practice to do well. If one wants to customize the recipe, first they need to start with one that has some probability of success.
Basically this whole process, no matter which process we are talking about, has a recipe that has to be partially successful in order to be able to start customizing it by effectiveness.
So here, the problem is the list of ingrediants and proportions.
What appears to be going on with your symptoms is something like what I described a few posts back on paradoxical symptoms. You took some active folate, METAFOLIN combined with the others you were already taking. It was successful and caused some processes to start that utilized the small amount of MeCbl that was available. MeCbl turns over every day basically, it isn't stored. When this amount was gone then despite obviously working folate methyltrap appears to have been triggerred manifesting with folate deficiency symptoms. All of this may have put a strain on what your mitochondria can deliver due to the carnitine hypersensitivity (severe deficiency) causing a tipping over the edge effect on ATP as well. The ATP output can be severely limited by this Carnitine deficincy and obviously by your response, your intentional AdoCbl starvation. What appears lacking is a replacement for the Jarrow. The Enzymatic Therapy is the most effective one I can find so far. One tablet a day, could make a world of difference. Then if that was sucessful the folate insuffificiency symptoms would indicate more L-methylfolate is needed. Also, watch out for low potassium symptoms. It's a matter of bringing the balance together.
IF that is a reasoanably accurate understanding of the situation a differrent selection of vitamins could turn it around starting in hours and proceeding as long as healing keeps going. However, the hyper response to carnintine and AdoCbl would indicate that has to be approached very carefully. For the ATP to be made at the full needed rate enough carnitine is needed in the body of the right kind in the right places. So a person in your situation might think about doing a microtitration on the carnitine to bring about that part of things very slowly. The carnitine is the most controllable accelerator for the mitochondria. It is also necessary for "energy", as in literal too tired to move becasue of lack of energy. These things, both the methylblock and the low ATP can cause incredibly severe and extensive muscle pains.
What do you find intolerable about ATP startup? This is important in considering these things. There may be more than one reason for intolerability. Your body is literally starving of absolutely vital minimums (vita-mins) nutrients for which there is no substitute. We don't know why. In my opinion it is within your grasp to have substantial recovery before it gets much worse, as it can and may very well do That gets very painful with this kind of starvation. I woke up wishing I were dead for more than a decade becasue of the severeity of the pain caused by b12 and folate starvations. Are your muscles atrophying yet? They get tight and very painful doing that.
So now you have some things to think about, and a different perspective. It looks like you have a major conundrum. Good luck and good health.
.
Freddd
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Hi Adreno,
I would be inclined to agree as Merck has very strict contractual provisions that all vitamin sold Metafolin must meet Metafolin pharmaceutical standards, except fot smaller dose. If there were brand differences on this I would be surprised. That was one reason I was sure that we could count on Metafolin to deliver a predictable result. On the other hand I have had one reasoanble assumption after another overthrown by results for the last 40 years,as we all have. And on the gripping hand perhaps there is some effect from "neutral" ingrediants in some way.
Freddd
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Freddd
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HI Jeffrez,
So they are using 2-4 grams of carnitine, so that in itself is a HUGE difference. The thyroid gland is has lots of mithochondria requiring lots of AdoCbl and l-carnitine for the internally generated ATP required for operation.
So, the form of Carnitine is not specified. One of my peciuliarities is that I require L-carnitine fumarate to be supplied for me to get the best responses from my mitochondria. Apparantly I don't synthecize it well. So here is an entire new gene variant to looking for. ALCAR, tartrate, mixture of 4 including fumarate, none of them worked at all and in fact shut down the response I was having from the previous days dose. So 2-4 grams of the wrong kind of carnitine could shut down the mitochondria in the thyroid, hypothetically, thereby reducing thyroid production. Now I am interpreting this in terms of my experience and of quite a few others regarding a reasonably common LCF specificity. Perhaps it is the AdoCbl and LCF, along with methylation being restored, that has caused anoccasional person to have their thyroid gland reactivate.
Working from a different basis of understanding can flip the meaning 180 degrees.