REFEEDING SYNDROME - The clues to healing via induced deficiencies

[Athene*]

Many thanks for reply, @Freddd It's so useful to see your list. I'm only supplementing roughly half of your amounts of many of those minerals. I was doing Boron 9mg and then dropped to 3mg a few weeks ago.

I'm never sure how long to keep going with the high doses. Will we always need high doses e.g. 9mg of Boron instead of 3mg?

I notice "jaundiced" as well. DId they tell you the cause; liver or rapid red cell breakdown? Different causes and different fixes.

They didn't see it as important, Freddd. Maybe they did LFTs on the CBC. They weren't too bothered about it, just sent me away to be 'fed'! (I was eating fine really, just not thriving. You probably hear this so often from people with these unfortunate genetics...). My LFTs are always very good as an adult and bilirubin is low end of range now. Haematocrit is stubbornly at just below range even after years of injecting etc. Red blood cell count is often just below range as well. Haemoglobin and iron are usually good. MCV was improving well (MCV 93 last year) but up a bit since recent surgery (MCV 97).

I asked how old you were when you got ill. Since 12 means that you have lots of depth of possibly impaired cells. I didn't start having trouble with trace minerals until after 6 years of healing and a glutathione trial that damaged me seriously.

This makes sense to me. It began after that damn nitrous oxide for removal of teeth in order to have braces, age 12. Sorry about your dreadful glutathione experience. I'm afraid I made a big mistake with folic acid. In my 30s I read it helped with many of my symptoms so I began supplementing it at 400mcg daily for at least a year, not realising it was making me worse, though I felt great at first, I quickly felt awful again, but wasn't sure why at the time. That was followed by yet more nitrous oxide for another minor surgery.

If all my potassium had accumulated doses I would be taking 8000 mg a day. Instead about 3500 mg keeps me almost balanced.

Yep, I'm up to 4000mg last few days because of trying to raise LCF too fast. Adocbl puts a huge demand on potassium for me too.

The copper I would have a couple of targets for reducing. One ios getting my copper level to mid range. The other is if all my deficiency damage heals,then I can reduce it and see if my serum level holds level.

I see you only take 2mg x twice daily. I guess you started with more..I don't seem to have copper deficiency symptoms (yet...) I hope this goes well for you. I was trying to understand cerulolplasmin and its role in copper metabolism the other day. I"m sure you're getting it all thoroughly checked out.

I think getting the deadlock quartet working smoothly and getting rid of all paradoxical folate deficiencies, and getting carnitine going on a smooth titration. The extreme experiences you have had with carnitine appear to be due to CNS demyelinations hypothesized.

Good plan. I just need the mental strength to keep going like you have done. Fingers crossed. And if the bloody medical system would leave me be now...

Then when AboCbl is saturated, the titration of carnitine could go smoother.

Should I titrate Adocbl a bit more before trying to increase LCF?

Strangely I have difficulties with Adocbl causing methyl trap symptoms (losing folate almost immediately as well as potassium) every damn time I try it. Maybe I should just bite the bullet and take that CNS dose twice weekly (*edit, fortnightly) and hope it saturates like you say, instead of the small bits I'm trying to titrate tortuously slowly...

I really think you're right about the Adocbl end of things for me. It's where I've always had the most difficulty and the LCF too, compared with relatively easy titration of Meb12 & folate.

Also, your thyroid needs a full load of AdoCbl to work correctly.

Thanks for this explanation, Freddd I've always worried about mitochondria issues being hypothyroid but can't get the thyroid level up no matter what I try (currently on dessicated pig thyroid plus T3). I've given up trying to micro manage the thyroid after reading your posts. It's never going to be right until I get the Adocbl sorted.

When I've had good phases of healing and energy my bloods in general look great and my t3 comes up quite a bit bringing down cholesterol (only mildly elevated). When PEM happens (every time I exercise) or methyl trap happens or not managing the Adocbl etc, the t3 drops like a stone (and cholesterol rises immediately - I'm not worried about that, just interesting to observe how it's all connected).

Further TMG may calm down the carnitine and make it more comfortable.

TMG causes big potassium demand for me. I guess that's to be expected? t'd I'm already taking 4K potassium. Would love to take the powder gluconate but stuck with a pill form, because NOW don't certify the powder gluten-free.

The B12 serum level doesn't say anything at all about what is a sufficient dose for any given person or group. Studies that use symptoms often find that 2/3 or so of people benefitting from MeCbl would not have been accepted into a study becasue their serum level is too high.

Sadly my own GP is still committed to testing serum no matter how many papers I show her. At least she is willing to test MMU occasionally.

If you have epithelial lesions, acne type lesions, canker cores, angular cheilitis, skin cracks by finger nails and the like, getting all those things healing will get most of your body healing. You looked at the symptoms list by nutrients? It is also in order of what things were affected.be the nutrients in the order the nutrients were given. The clustering is such if you can get one of a cluster healing, the others will do so also usually.

Yes, I get all of those at times, except for canker sores (only at beginning of folate supplementation, went away with rapid titration), and only the tinging of angular chelitis when starting, so I recognise it before it starts, skin cracks (I call them paper cuts) and I also get painful hang nails by fingernails - my trademark folate insufficiency sign, plus itchy scalp and hair shedding. Goes away when PEM goes away and folate comes up again. It's so useful to have your symptom list. It does get a bit easier to recognise things. The new things can be scary before it's figured out!

 

[Freddd]

While potassium supplementation is often discussed here on Phoenix Rising, especially as a consequence of refeeding syndrome while on the methylation protocol, the potential role of vitamin B1/thiamine in maintaining electrolyte balance is not often appreciated.

Acute thiamine deficiency and refeeding syndrome: Similar findings but different pathogenesis


Thiamin and folic acid deficiency accompanied by resistant electrolyte imbalance in the re-feeding syndrome in an elderly patient

I missed this part about regulating potassium last time around Thankyou, good to know. CblC disease has as a characteristic, unstable electrolytes. I have a peculiar thing that is one cause of my trouble with maintaining.potassium. I have had a periodic folate deficiency since early teens, at least. I put on as much as 10 or 12 pounds in a few days, or even more in longer period and then when my folate turned around it would pour out taking a lot of potassium with it in the urine. B1 above a certain level causes a lot of downward pressure on potassium for unknown reasons. I took Benfotiamine with thiamine included as long as I could until I reached my limit on my stomach tolerating potassium and then had to stop it as the intense leg spasms became uncontrollable It may have been helping my peripheral neuropathy.

In talking about the nutrients required is included that all the basic stuff has to start the day before the MeCbl. With all those things potentially missing the logic becomes unsolvable to date. B1 at least has a very large influence on how fast I lose and/or use potassium for unknown to me reasons. Just flooring the potassium without letup makes changes in potassium with cell making useless as a signal.

 

[Freddd]

@Athene* I found that Thiamine HCL didn’t resolve my heart issues, and in fact initially aggravated them. It may have helped eventually, but on reading the B1 thread, I ordered and took Allithiamin for a month to six weeks up to about 150 mg/ day. What it caused, though, was more IBS and stomach upset, and I realized that the garlic/allicin was probably causing some of the symptoms and switched to Benfotiamin, again titrating up to the 150mg/day level. It seemed to help the IBS, at least initially. Neither one caused an increase in my need for potassium, and the Benfotiamin which I’m currently taking may lower potassium need somewhat even at the 150mg/day dose.

My heart chronic palpitations were resolved by the Benfotiamin. The other symptom that was helped was my sore and weak calves. In fact when I have tried to lower the dose, thinking it might be replete, the symptoms return, and I raise it again.

But dismayingly, I seem to be stuck in some form of refeeding where my IBS is fairly chronic though kept barely under control alternately by AdoB12, Carnitine, Folate and occasionally by Methyl B12. And I keep thinking more thiamine might also lower my fairly high Folate intake of about 18-20mg/ day. @Freddd has been at this for a long time, but I am still trying to parse the symptoms, ‘feel’ my way to the predominant symptom for each item.

The latest and most complex seems to be the carnitine for me. Strangely, once I started to take it last fall, I seem to absolutely need it. I can stay off it from days to a week or two and then horrible symptoms of insomnia (though my sleep has never been anything but haphazard) occur and a sort of anxious agitation and a tightness of my muscles, and only the carnitine will make things relax. Interestingly, in recent months, the carnitine has sometimes given me a three or four hour span of sleep that comes as a complete and welcome surprise.

Yet, raising the carnitine, even a bit might work briefly, but then backfire on me.

Well, I really can’t say. I’m flummoxed.

I am convinced that at least occasionally, the IBS which can become diarrhea is a form of detox—particularly since adding the carnitine. But this unsteady gut, sometimes burbling through the night is disturbing. I’ve been trying unsuccessfully to get the attention of my gastroenterologist. She has treated me for SIBO in the past, and perhaps I’m back in this place. I’ll have the try her again when sunlight hits this side of the planet...

HI Kathevans,

This kind of hits a recognition. I have found that my methylfolate and carnitine, each separately becomes ineffective. With the methylfolate I have to switch to a slightly different methylfolate, for instance changing from Metafolin to Quatrefolic restores functionality and resets the other brand in a day or two and the original one becomes active again. This happened after years the first time, now it's happening each 3 months. I don't know why, only speculation.

The carnitine is a little different. One day the l-carnitine fumarate just stopped working for me. I had a bottle of lc tartrate that had never worked, tried that and it worked well. that appeared to be coincident with getting my copper more towards a usable level. I had to switch back when I had a 20+ drop in copper and it changed back to tartrate when returned to the higher level. I get tested only every 3 months so it's hard to tell timing. I found when I reached 45mg on the methylfolate dose that all the two week fluctuations virtually disappeared. The one indicator of folate effectiveness I have without lesions forming is a that more B12 ends up in my urine more quickly when I have less effective methylfolate and when I have high folate effectiveness the B12 doesn't show up fast enough to be seen, and that's on 30mg/day injected subcutaneously as 3x10mg. I average 1.25mg going into serum hourly and it maintains my serum level around > 220,000 pg/ml.

"The latest and most complex seems to be the carnitine for me. Strangely, once I started to take it last fall, I seem to absolutely need it. I can stay off it from days to a week or two and then horrible symptoms of insomnia (though my sleep has never been anything but haphazard) occur and a sort of anxious agitation and a tightness of my muscles, and only the carnitine will make things relax. Interestingly, in recent months, the carnitine has sometimes given me a three or four hour span of sleep that comes as a complete and welcome surprise. Yet, raising the carnitine, even a bit might work briefly, but then backfire on me. Well, I really can’t say. I’m flummoxed." -

How does it backfire on you? Things like very intense mood sequences of very unpleasant nature perhaps? That one I know what to do with. Now insomnia and sleep It sounds like another refeeding syndrome deficiency symptom. So you add carnitine, the ATP cycle kicks up. Many people don't know but inside the cycle which can be increased by carnitine becasue it transports fat to the mitochondria and inside each such cycle is a methylation subroutine that can be increased in activity by TMG. There is the usual what people think of methylation and the Methionine-HCY cycle. It is stimulating and can cause some people insomnia when not balanced with the ATP side of things. This cycle is calming unlike the other cycle that is energetic. Getting this balanced out can be difficult.

Do you have anxiety or something of the sort as one of you symptoms?

 

[Freddd]

Yes, I get all of those at times, except for canker sores (only at beginning of folate supplementation, went away with rapid titration), and only the tinging of angular cheilitis when starting, so I recognise it before it starts, skin cracks (I call them paper cuts) and I also get painful hang nails by fingernails - my trademark folate insufficiency sign, plus itchy scalp and hair shedding. Goes away when PEM goes away and folate comes up again. It's so useful to have your symptom list. It does get a bit easier to recognise things. The new things can be scary before it's figured out!

I get most of the same, often starting with only one "methylation" item with copper. With the cheilitis I feel it as a burn rather than tingle. THat burn can disappear within hours of folate (switching to other brand for instance when current type loses it's effect a little, I get the cheilitis.burn.

TMG causes big potassium demand for me. I guess that's to be expected? t'd I'm already taking 4K potassium. Would love to take the powder gluconate but stuck with a pill form, because NOW don't certify the powder gluten-free.

Yes, it encourages methylation done inside the mitochondria rather than elsewhere. Clear it gets the mitochondria working better.

I see you only take 2mg x twice daily. I guess you started with more..I don't seem to have copper deficiency symptoms (yet...) I hope this goes well for you. I was trying to understand ceruloplasmin and its role in copper metabolism the other day. I"m sure you're getting it all thoroughly checked out.

I started with a different variety of copper. I could feel the effect. I increased the doses, and my serum level plunged. It irritated my stomach terribly. I had to find a different form and found a way to get it in me, 2mg twice a day after I take a medication that protects my stomach. These ceruloplasmina all contain copper and move things in and out of the liver and I don't really know much about them.

 

[Freddd]

That said, this forum lead me down the path that brought me to here and I am beyond grateful. What I have learned is that it's all relevant! Right down to those microminerals. Another shoe could drop, of course. I'm by no means complacent... In fact, I'm working assiduously on my gut now (l-glutamine, probiotics, digestive enzymes, etc).

I started a new to me probiotic VSL#3. It works best of the various ones I have tried. It's expensive. And it is stored in the refrigerator at the pharmacy. It deteriorates at room temperature.

 

[Kathevans]

@Freddd @Athene* @Eastman There is a lot to sort here, and for all the wealth of experience, thank you all. I am sure I am dealing with refeeding multiple substances and that they are all influencing each other. As I’ve recently posted, Boron has been a game-changer for me, though, some of the night time agitation/anxiety/ insomnia/ibs that it initially relieved has returned (even as I work with roughly 2100-3000 mcg/ day) and I am also smack in the middle of doing another NutrEval Test as my doctor (and I as well) was so alarmed by the past one only four months ago which showed my mitochondrial activity in High Need, though my Methylation had nudged into the Borderline mid-range.

I am experimenting with raising the LCF ( as it still seems to ‘work’ for me), which I had been holding at just over half of the Doctor’s Best. What it did right away is cause a return of my runny nose, a folate deficiency symptom, so I will be raising that today. While much calmer, less agitated and not anxious at all, I have been awake much of the night, sometimes with a frontal folate headache—and possibly more folate or even a bit more boron will help that. As you say, Fred, these trace minerals are tough to balance. I’ll continue to work with the Boron as I have noticed, even from the start of taking it, that it affects not only my swollen arthritic hands, but the painful hand twinges that signal the tangling of the fascia in my Dupytrens contraction in my left hand in particular. This affect and the sore joints and my catching Trigger fingers are so noticeable that there are times of the day when the symptoms nearly disappear, and other times when my hands are very sore—all as supplements move into my body. I’ve begun to get the other trace minerals from a once daily PicMins, but those doses are fairly low.

In any case, because severe electrolyte balance is critical to refeeding, I wanted to respond to @Athene* ’s recent experience following your hospitalization. I’m relieved you dodged the nitrous oxide sleep, as at least twice, once when I was probably four or five (suffered serious ADD as a child) and again twice in my twenties for wisdom tooth removal (followed by anxiety disorders) I received that as an anasthetic. But the electrolyte imbalance/loss is disturbingly familiar. I happened to have the flu and drank nothing but water after a bout of vomiting and diarrhea. I recall my husband checking on me occasionally as I sat on the bathroom floor, and I recall having a very hard time stringing words together when I was trying to tell him I was feeling a bit better. I even recall him asking me if I didn’t think we ought to head to the hospital. But I don’t recall a thing after that.

Not the trip to the fortunately local hospital, or the fact that I didn’t know my name when I was asked, not the grand mal seizure I had, or orderlies cutting me out of my clothing. Certainly not the three days my husband sat by my side as I was slowly brought out of a coma—slowly so I would suffer no brain swelling. I do remember asking “Where am I?” and ‘What happened?” more than once as it took a certain level of electrolytes for me to be able to understand and retain information. And I remember the PTSD I suffered from that summer—nightmares particularly—as my body responded to the past crisis.

It’s no surprise that I studied and tried to understand the information on this site for months before attempting the protocol myself. This loss of physiological balance is especially disturbing because it creeps up on you, and really, you have no control. You just drift away. Both Athene and I were lucky to have spouses nearby.

Fortunately, most symptoms are more obvious and readily dealt with—fatigue, rapid heart beat and so on. But for all who walk this path, it’s important to be alert to the gravity of the delicate balance we can find ourselves in...

@Freddd Thank you for the probiotic suggestion. I’m beginning to work with one just in the last month. I’ve read about the VSL#3 before and will add it to my supplement list once I finish my current bottle...

I’ll get back to the carnitine issues next...

For the moment, it’s back to sleep, I hope!

 

[aquariusgirl]

@Athene* .consider...iodine

 

[Athene*]

I get most of the same, often starting with only one "methylation" item with copper. With the cheilitis I feel it as a burn rather than tingle. THat burn can disappear within hours of folate (switching to other brand for instance when current type loses it's effect a little, I get the cheilitis.burn.



Yes, it encourages methylation done inside the mitochondria rather than elsewhere. Clear it gets the mitochondria working better.



I started with a different variety of copper. I could feel the effect. I increased the doses, and my serum level plunged. It irritated my stomach terribly. I had to find a different form and found a way to get it in me, 2mg twice a day after I take a medication that protects my stomach. These ceruloplasmina all contain copper and move things in and out of the liver and I don't really know much about them.

Thanks @Freddd I will try a small dose of TMG and titrate up hopefully. it's fascinating to watch the folate doing its work. I can see the paper cuts and hang-nails healing across a single day and overnight all gone.

You mention stomach protection. I had to take medicine to protect stomach against antibiotics for a few weeks after the recent surgery. I read that H2 receptor antagonist Ranitidine (Zantac) interferes less with mineral absorption than PPI drugs do and it worked fine for me whereas PPIs were difficult for me in the past (severely drying of stomach acid).

Back in 2010 I was put on PPIs for two or three years for acid reflux (all long gone since B12 & folate supplementation) and I had dreadful digestion problems. You probably know how PPIs dry up the acid horribly.

Nowadays I eat a small amount (couple of teaspoons) of sauerkraut daily since watching a BBC documentary last year by British doctor Michael Mosley who talked to some professors, lab guys etc and discovered that a spoonful of sauerkraut is equivalent to a whole bottle of probiotics in it's effect on gut biome. I only use a small amount because of potential folic/folinic content of cabbage but even that small amount has been incredibly effective as a probiotic. For the first time in my life I was able to tolerate three weeks of antibiotics with no yeast infection whatsoever. Another thing that's surprisingly effective for gut protection is stewed apple (you'd probably call it 'apple sauce'!). Simple, but the pectin is so healing. Bone broth is wonderfully healing for the gut too if you have the patience to make it.

Freddd, my husband has been diagnosed as B12 deficient after a difficult to shift HPylori infection. I have read that HPylori can erode the parietal cells in stomach lining. He had lost weight and had visible muscle shrinkage in upper arm on one side (same side as 'frozen shoulder'). The other symptoms were mainly fatigue and insomnia and uncharacteristic anxiety. The doc wanted him to have a monthly hydroxocabalamin injection because supplements weren't making much difference.

I gave him daily 1mg Mecobalamin injections (for six months now) and every single symptom went away week by week. It was like a miracle. Shoulder mobility perfect again. He has tons of energy now and muscles building fast and all his bloods are beautifully in range and he sleeps really well. His iron and ferritin had got low but now very healthy, well in range. He uses 1mg daily of MeFolate plus a standard B Complex (no folic acid). I give him a standard mineral supplement too.

There is pernicious anaemia in his family. His response to Mecobalamin is just amazing. I wish it was so quick for the rest of us!! He had not potassium loss whatsoever.

Can I ask, Freddd, if he continues on Mecobalamin, perhaps 1mg on alternate days, would that be enough or even too much? He doesn't need anything like the doses I need. He's 57 now. Doing great since Mecobalamin. No other health problems. Very good cardiac, cholesterol etc etc. Never had any ME or chronic fatigue issues.

 

[Athene*]

@Athene* .consider...iodine

Thanks for reminding me @aquariusgirl ! I had begun to take a little iodine (Lugol's diluted in water, because can't find Iodoral in low enough doses). I tried Iodoral years ago but too much, 6mg daily, and it crashed me badly. Before the recent surgery I was managing roughly 200mcg daily. I get a little iodine in the pig thyroid too, but not enough I think. I must go back to the iodine...

Was it you who mentioned a different form of copper (mitosynergy??) or am I mixing you up with someone else? It stuck in my mind in case I ever need copper. Going by @Freddd's experience it sounds difficult enough to take. I wonder if the mitosynergy one is easier?

 

[Athene*]

It’s no surprise that I studied and tried to understand the information on this site for months before attempting the protocol myself. This loss of physiological balance is especially disturbing because it creeps up on you, and really, you have no control. You just drift away. Both Athene and I were lucky to have spouses nearby.

Fortunately, most symptoms are more obvious and readily dealt with—fatigue, rapid heart beat and so on. But for all who walk this path, it’s important to be alert to the gravity of the delicate balance we can find ourselves in...

Well said @Kathevans So glad you got through that experience ok. Good to see you doing well these days. I'm taking things one day at a time for now, but like you, I intend to keep going despite the setbacks - still so much better than where I was before I began this...

 

[Freddd]

Tlerate three weeks of antibiotics with no yeast infection whatsoever. Another thing that's surprisingly effective for gut protection is stewed apple (you'd probably call it 'apple sauce'!). Simple, but the pectin is so healing. Bone broth is wonderfully healing for the gut too if you have the patience to make it.

Freddd, my husband has been diagnosed as B12 deficient after a difficult to shift HPylori infection. I have read that HPylori can erode the parietal cells in stomach lining. He had lost weight and had visible muscle shrinkage in upper arm on one side (same side as 'frozen shoulder'). The other symptoms were mainly fatigue and insomnia and uncharacteristic anxiety. The doc wanted him to have a monthly hydroxocabalamin injection because supplements weren't making much difference.

I gave him daily 1mg Mecobalamin injections (for six months now) and every single symptom went away week by week. It was like a miracle. Shoulder mobility perfect again. He has tons of energy now and muscles building fast and all his bloods are beautifully in range and he sleeps really well. His iron and ferritin had got low but now very healthy, well in range. He uses 1mg daily of MeFolate plus a standard B Complex (no folic acid). I give him a standard mineral supplement too.

There is pernicious anaemia in his family. His response to Mecobalamin is just amazing. I wish it was so quick for the rest of us!! He had not potassium loss whatsoever.

Can I ask, Freddd, if he continues on Mecobalamin, perhaps 1mg on alternate days, would that be enough or even too much? He doesn't need anything like the doses I need. He's 57 now. Doing great since Mecobalamin. No other health problems. Very good cardiac, cholesterol etc etc. Never had any ME or chronic fatigue issues.

@Athene* ,

It's good to hear of his rapid response. First some pharmacokinetics on B12. All forms are grouped together and despite perhaps minor differences. So after absorption the serum half life is 20-50 minutes. Over the first 12 hours the serum half life averages 4.9 hours. From 12 to 48 hours the serum half l;ife is about 12.9 hours. THen in one day, approximately 97-98% is excreted. At 48 hours 99% is excreted, unchanged. I have methyltrap type symptoms by day 3 after last dose. I need CNS doses of 10mg 3 times a day. Two times 15mg doesn't make it.that long for the nerves. The minimum CNS effective dose for those with problems with getting B12 into the brain and keeping it there appears to be > 6.0mg AND <=7.5 mg. I would think 500 mcg/day subcutaneous is better than 1000 mcg every other day. It may make no difference from 1000 mcg daily and if symptoms start up you know what they are.

 

[Athene*]

Thanks for this @Freddd We really appreciate your sharing of knowledge. It has really helped him as well as me, and who knows what way he would have ended up with only a monthly hydroxocobalamin injection (shortly moving to three months according to GP)...

He has noticed some pimples and a little more hair loss (hasn't got much hair anyhow! Familial baldness). These symptoms are of no concern whatsoever to him, and I'm guessing his testosterone is improving, which is a good thing?

 

[Freddd]

Thanks for this @Freddd We really appreciate your sharing of knowledge. It has really helped him as well as me, and who knows what way he would have ended up with only a monthly hydroxocobalamin injection (shortly moving to three months according to GP)...

He has noticed some pimples and a little more hair loss (hasn't got much hair anyhow! Familial baldness). These symptoms are of no concern whatsoever to him, and I'm guessing his testosterone is improving, which is a good thing?

@Athene* ,

The same thing happened to me. I started getting a bald spot. It stopped for 20 years. Then with MeCbl and the rest, I started loosing the hair again. The "pimples" could be from HyCbl from liquid MeCbl being exposed to light or HyCbl injection itself. Or folic acid can do it to some people. 45-70 mcg of folic acid or veggie folate in soy milk (1 cup) and after a month or so I got cheilitis. It went away as soon as I stopped making my smoothie with soy milk or anything of the sort.

 

[Freddd]

@Athene* .consider...iodine

I have had tremendous differences in absorption of things.by form or brand as have many others, Is the kelp containing iodine absorbable for most people? How absorbable are various forms of iodine. How would one know experientially about an iodine deficiency. What are the quickest ones to show up?

 

[Athene*]

@Athene* ,

The same thing happened to me. I started getting a bald spot. It stopped for 20 years. Then with MeCbl and the rest, I started loosing the hair again. The "pimples" could be from HyCbl from liquid MeCbl being exposed to light or HyCbl injection itself. Or folic acid can do it to some people. 45-70 mcg of folic acid or veggie folate in soy milk (1 cup) and after a month or so I got cheilitis. It went away as soon as I stopped making my smoothie with soy milk or anything of the sort.

@Freddd Sorry the hair loss returned for you too though I'm sure you've more to worry about!

I'm keeping an eye on his PSA because I read that testosterone level affects it i.e. raising the testosterone can raise the PSA. I saw you mentioned somewhere that B12 raises testosterone.

His PSA went from 1.42 (range 0.00-3.5) last year to 1.91 then 1.89 last month. Still well within normal range and his routine digital examination is fine. But I still watch it.

Have you noticed a PSA increase? Maybe his PSA was so low because testosterone was too low and now it's just normal PSA...

I'm not worried but this case is interesting (a case of existing cancer here, but interesting to note though folic acid was being taken as well as folate and B12 - cyanocobalamin form):

J Med Case Reports. 2011; 5: 413.

Published online 2011 Aug 25. doi: 10.1186/1752-1947-5-413

PMCID: PMC3199279

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3199279/

‘Control of prostate cancer associated with withdrawal of a supplement containing folic acid, L-methyltetrahydrofolate and vitamin B12: a case report’

 

[Athene*]

I have had tremendous differences in absorption of things.by form or brand as have many others, Is the kelp containing iodine absorbable for most people? How absorbable are various forms of iodine. How would one know experientially about an iodine deficiency. What are the quickest ones to show up?

@Freddd As far as I know from my year of visiting iodine forums (some of them a bit OTT), the kelp form is avoided because of potential mercury contamination.

Symptoms of low iodine for me were low thyroid symptoms, among them feeling cold, achy a lll over, and eyebrow and hair loss. Then again that happens to me from anything that stops ATP. The iodine did warm me up though and stopped the very slight rosacea I had briefly. But then it caused me to crash badly. Same symptoms as a hard methyl trap - all over body aches worse than before, sweats, chills, crushing fatigue, hair shedding by the handful.

I had been taking too much for me (having read others were taking even bigger doses) i.e. 6.25mg (half of an Iodoral tablet which is pure iodine, no additives. Some people use crumbs of this. It's one drop of the 5% Lugol's iodine). The other form that's pure with nothing added is Lugol's iodine. Lots of people use a drop, diluted however much you want (hard on stomach if not dilute enough). I will probably dilute it until I get approx 200mcg daily since the B12 oils doc - Dr Greg Russell advised that amount is needed daily, along with riboflavin and selenium, in order to convert t4 into the active thyroid hormone t3 and that t3 needs to be optimal for B12 to work. As we discussed it's the Adocbl in particular that helps the thyroid so I'm not micro managing thyroid anymore, just keeping an eye on selenium, molybdenum & now iodine.

Low iodine symptoms are generally listed as being the same as low thyroid symptoms: goitre, feeling cold, all over body aches, eyebrow loss etc, so it's difficult to distinguish symptoms from other thyroid lowering causes.

When I gave up the iodine, the slight rosacea I had vanished with sublingual riboflavin (comes back as soon as I drop the riboflavin), also my eyebrows grew back with riboflavin (helps me hang on to my folate). I guess I need the riboflavin for my thyroid function, or general ATP function...there is about 150mcg iodine in the pig thyroid I take, but I don't take a full grain of that.

P.S. There is an iodine test as far as I remember - some kind of urine excretion test. The test where you put iodine on your skin and wait to see how it absorbs is generally considered bogus.

 

[Athene*]

@Athene* ,

It's good to hear of his rapid response. First some pharmacokinetics on B12. All forms are grouped together and despite perhaps minor differences. So after absorption the serum half life is 20-50 minutes. Over the first 12 hours the serum half life averages 4.9 hours. From 12 to 48 hours the serum half l;ife is about 12.9 hours. THen in one day, approximately 97-98% is excreted. At 48 hours 99% is excreted, unchanged. I have methyltrap type symptoms by day 3 after last dose. I need CNS doses of 10mg 3 times a day. Two times 15mg doesn't make it.that long for the nerves. The minimum CNS effective dose for those with problems with getting B12 into the brain and keeping it there appears to be > 6.0mg AND <=7.5 mg. I would think 500 mcg/day subcutaneous is better than 1000 mcg every other day. It may make no difference from 1000 mcg daily and if symptoms start up you know what they are.

P.S. @Freddd If you're still around, can you say if 10mg weekly of Adcbl would be enough for my husband to take? I'm guessing he wouldn't need the CNS dose of Adocbl like I would, given he never had any major collapse or cognitive issues...

 

[Freddd]

P.S. @Freddd If you're still around, can you say if 10mg weekly of Adcbl would be enough for my husband to take? I'm guessing he wouldn't need the CNS dose of Adocbl like I would, given he never had any major collapse or cognitive issues...

@Athene* ,
LIkely 10mg once a week will keep his AdoCbl topped off, if he is taking MeCbl daily. That is the base form of B12 that then normally gets changed to whatever form the body needs, AdoCbl for instance. Too much AdoCbl too often can cause methyltrap lesions that are visible and who knows what else in the body.is hidden from view.

I have PSA just hovering slightly over what it ought to be. My urologist sees no point in dropping testosterone or anything of the sort and it seems to be having no effect. In treating proven cancer, taking anti-androgens for prostate increases all cause death and doesn't stop the cancer. The interpretations by different studies and docs may be different.

A new study really muddies the water, including folic acid and methylfolate together when the increase of cancer growth from folic acid my not hold true for methylfolate.

For MeCbl problems beyond usual startup becasue of damaged neurons acting badly when you start the MeCbl, the best titration I can think of for MeCbl are of two types. The first is use a tablet under the upper lip. Hold there until you barely start to feel. it. Two possibilities then, take it out and start it again in a couple of hours and again only until you feel it or when you first start to feel it, chewe thee tablet and swallow. That stops absorption within a few minutes. The next 10 mcg absorbed over some hours does little. Doing this slowly raises the the body amount. It's important another way to repeat multiple times in the day and soon you will not be so sensitive to small quantities. Another variation is break it up into crumbs, and put a crumb under the lip, doing that over and over until you just feel it, then back off for a while and then continue. Keeping it on the edge keeps things moving towards equilibrium.. Do what you need to balance the refeeding symptoms induced. In my experience many of the symptoms you are trying to avoid can heal over 9-12 months often. It takes patience but can increase comfort.

 

[Sophiedw]

@Freddd,

I'm not sure if this is the right place to post this or what the correct way to get in contact with you is but I've had a terrible response to NAC that I believe you could Give me advice on how to recover (if recovery is possible?). I have induced a seamingly permenant and terribly severe Brain fog that has lasted for 5 weeks after only 5 days of NAC and as a researcher with undergraduate in biomedical science I am at a complete loss and may not be able to continue with my studies.

I think I was already a bit deficient of b12 which was driving a variety a symptoms but nothing as severe as the anecdotal reports of cfs/me on here.

If you would be willing or able to give me any advice on this matter please let me know how to contact you.

I have been reading many of your posts and have the greatest respect for the way you have approached your own health problems and helped so many people. I just wish I had read your warnings of the dangers of NAC.

Thank you,

Sophie

 

[Athene*]

Thanks @Freddd Luckily he was able to take 1mg injections daily right from the start with no side effects whatsoever. Thankfully we caught the B12 deficiency early.

I'm trying to titrate LCF but can't get hold of Jarrow liquid version of l-carnitine - out of stock everywhere. Do you happen to know of any other good brand of the liquid form?