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Don't know what to do, need help!

girlfromeurope

Senior Member
Messages
131
Hi
A couple of months ago I was diagnosed with b12 deficiency.
So I tried the protocol and the first week I felt great. My anxiety and depression were suddenly gone.

But then I started feeling awful and got low potassium symptoms
My low potassium symptoms were anxiety, depression, muscle spasms, severe weakness, and more.
This week I started taking a lot of potassium. My symptoms are less severe( I don't feel like I'm dying anymore) but I keep feeling very depressed and have no appetite. I still have heart palpitations and my blood pressure is high and at night I still have the muscle weakness and dizzyness . But taking more potassium doesn't seem to make me feel better.Yesterday I took about 2000-3000 mg but didn't make me feel better. I don't know if i'm taking too much or to little, it both causes the same symptoms. I also take magnesium/calcium supplement. Are there more people here with adrenal fatigue who have problems with potassium?

I don't know what is making me feel so bad. I also have increased acne so I tried increasing methylfolate but it doesn't seem to help.I took 2000 mcg metafolin today.It seems to make me more dizzy and sensitive to noise. And i have increased tinnitus.
I'm scared that taking a lot of methylfolate makes my b12 deficiency worse. I took 2000 mcg metafolin today and 3000 mcg b12. I don't know if I need less or more. In what ratio are most people here taking metafolin/b12?

I don't know what to do I feel so depressed I'm crying everyday, even now when I'm writing this thread.
There is no doctor I can talk about it. The only people I can talk to about it are people on this forum.

Thanks for listening
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
@girlfromeurope

Hello GFE

It can be very frightening and confusing when trying some therapy with this illness.
I've been here a few years and I have very limited funds to do or try things. When I think about the methyl protocol I get confused too thinking about what a symptom I'm feeling means.
I have no expertise but I would suggest to you that a course of action that could do no harm would be to pull back on the amount of both B12 and metafolin you are taking.
And just maintain the amount of potassium that was making you feel better and perhaps up the magnesium dose.
These protocols are complicated also by which brand we choose from what is available to us. The magnesium I use is a magnesium bisglycinate and has a 40mg dose of taurine with it. It is a 150 mg per capsule dose. I take about four (total) dosed throughout the day at the moment.

I hope you start to feel better very soon.
The one sure thing in life is that if you wait, things will change.
:hug: SD
 

girlfromeurope

Senior Member
Messages
131
Thanks for your reply
I take 100 mg magnesium but i find that taking more magnesium balances out my potassium because it often makes me worse.
The feeling I'm having is probably from low potassium.
But taking 500 mg a couple times a day doesn't make me feel better.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Do you take the 500mg at once?
I'm new to this too. I'm older and uber cautious about upsetting a system that has been through a lot so I only ever take two at a time and spread them out as follows: two upon waking and with food, one at lunch or middle of afternoon (depending on my rising/breakfast time),
two with dinner and then one before bed. If you did this it would add one more potassium per day. I've had no bad reactions so far.
And of course, the usual caveat applies; that we're all different and respond individually.
But if it's an issue of too much at one go it will be easy to correct.
Again, I hope you find out what is making you feel so unwell.
regards,
SD
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi gfe. I'm posting a few extracts from Freddd's comments that might be useful. The first links to an excellent FAQ re the protocol, compiled by phoenixrising member howirecovered. Sorry I don't have the wherewithal to comment specifically myself. I'm going very slowly, adding Mfolate by 200mcg amounts, now taking 1.9 mg w/ 5 mg MB12, 5 mg AdB12, 500mg L-Carnitine Fumarate. When I decreased my B vitamins, as you'll see in the following quotes, I was able to decrease my potassium A LOT!. I use potassium gluconate powder, much easier that the small dosages of tablets. I'm also using my potassium primarily in footbaths, with many of my other supps, which works for me. My baseline K+ 500mg, but when it's hot or detoxxing, or other stressors, it goes up, easily to 2000mg 2-3 times daily. Hope some of this is helpful to you. Some of my biggest issues have been anxiety, agitation, it's hard, I know. Do you have your other minerals as well? zinc, manganese, molybd...cheers, ahmo

http://howirecovered.com/active-b12-therapy-faq/
There Eric provides well organized information that can save you from trying to find your way through the voluminous information on Phoenix Rising. It will help you understand Active B12 therapy and methylation

http://forums.phoenixrising.me/inde...ficiency-insufficiency-and-edema.26944/unread
Freddd: The body is said to have a “triage” system for distribution, or maybe utilization of, b12 and folate. Healing can turn on with methylation and ATP startup and yet deficiency symptoms can worsen on other layers. The placement of edema within a layer can be done by the symptoms set it responds with; angular cheilitis, IBS and acne type lesions, and others, depending upon duration and severity of insufficiency.

http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/page-8
ratios, once again.....the ratios between MeCbl/AdCbl/MeFolate + cofactors are of course individual and must be determined by trial and error, right? However, what are the recommended ratios to start out with?

There are no fixed ratios.

With 1mg of AdoCbl and 1mg of MeCbl each held for 1-2 hours against oral mucosa, one could end up with 200-400 mcg or more absorbed. This is enough to turn on all layers of healing except CNS for many of us. A start of methylfolate of 800mcg or less will usually produce a burst of healing on a couple of layers that then demands more folate than the body has easily available and so shorts other layers to supply the ones that are healing causing paradoxical folate insufficiency. So one titrates methylfolate until the insufficiency symptoms go away. This is usually between 1600mcg and 20-30mg depending upon how one reacts to other folates and B1, b2, b3.

While this is happening there is also usually a need for potassium of which needs to be titrated to the level of no symptoms. This usually happens in the range of 1200-3000mg daily in 4-6 divided doses. Again, this is dependent upon how fast cells are being formed and if too much b1, b2, and/or b3 can also be insatiable.

It is via systematic titration, finding peak effectiveness and staying there, not trial and error.

...Serum halflife might be a problem. If I don’t take b-complex twice a day I get a 24 hour pain cycle and at the 16-24 hour mark, heart arrhythmias. AdoCbl and LCF usually make for a much more even energy as they restore the mitochondria and are essential for that. Many have found that a second smaller LCF dose in midafternoon makes a difference. Also, l-methylfolate has a short halflife, about 3 hours so I find it best in at least 3 doses a day


http://forums.phoenixrising.me/inde...otassium-but-potassium-opposes-mf-help.25857/
I’ve been on Freddd’s protocol for about 2 months.

1) I’ve finally realized that I need Deplin level amounts of methyfolate (right now I’m at 10mg, but will probably have to go higher, possibly much higher).

2) I’ve also finally realized that I need to supplement with a LOT of potassium (1,000 to 2,000.

3) Well, I’ve read on these boards that potassium will block methyfolate.

4) Freddd also says that it’s important to keep a stream of Methyfolate going, dosing throughout the day, rather than a big dose.

So, logistically how can I get both of these things into my body throughout the day?!!

So frustrated!!!!
Hi Soporificat, [Fred response]

I know what you. The timing can be difficult. I take 4000mcg of Metafolin with my pre-meal supplements and meds; SAM-e, LCF, Levothyroxine, DHEA, Pregnenolone. An hour later I take 400mg of potassium. Then just before a meal I might have a couple of more folate tablets and then 30 minutes later take 5 or 6 potassium with the meal. I take b-complex with food. I also take 300mg of potassium at bedtime. However, with the folate unwound to needing 4mg to stop the cheilitis, I can now see if 6 or 8mg helps something even more. If the doses are 30-60 minutes apart or 2 hour after food, they don’t interfere particularly. I take the folate and then 30 minutes later potassium. I take the folate before food and the potassium with the food. It takes some practice. What I think is desirable is to have healing going, even if not perfect and then you get clues, more or less of folate or potassium needed. Follow the clues. Take small steps in titrating up to home in on a dose from below.

Considering that B1, B2 and B3 can cause changes in how much potassium and Metafolin might be used daily, it might pay to check the labels and find out how much you are getting. I found that a B-50 type supplement was too much in the b1 b2 b3 combo. Taking 100mg extras was too much. I found a b-complex with only 20mg of b1 and similar on the others and take it twice a day. It has slowed down the rate of potassium and folate need.

However, keep in mind that that amount of potassium and folate being used is in the range of that of people having effective healing. Stopping the potassium need stops the healing. HyCbl can affect about up to 30% of the symptoms for up to 70% of people. Nobody actually heals on it as the majority of b12 deficiency symptoms will keep worsening even while a few symptoms may improve. HyCbl is great for having the illusion of doing something and will keep most people safe from the discomforts of healing. Unfortunately they will generally continue to have worsening symptoms more narrowly defined. Good health to you. Follow the clues. If you keep it up for a year most of the symptoms being affected now will be largely gone and a different set will be healing.

....Have you identified your early onset folate insufficiency symptoms? I don’t use or suggest any specific fixed ratios. For instance I suggest l-Methylfolate be increased until one doesn’t have periodic bouts or continuous folate insufficiency symptoms. For me these a certain type of muscle pain, angular cheilitis, acne on my face, IBS and so on.

100mcg absorbed AdoCbl/MeCbl is all that is needed to start the need for even 30mg of Metafolin. These items are not tied together in any ratio. It is more the B1, B2 and B3 and maybe other things that drive the relative needs for methylfolate and potassium. Also, the amount of l-methylfolate a person needs also depends on how well their body handles folic acid, folinic acid and veggie folates.

....(Freddd)
At this point I am working out a 1 at a time titration of those three to try myself. I would suggest adding perhaps 25mg of one of them and waiting a couple of weeks and see what happens and proceeding from there. Re B1,2,3


...In the past decade I have seen several different causes for anxiety augmentation. There is an effect that affects some people to a degree but rarely just completely intolerable. It has to do with the ratio of AdoCbl to MeCbl. Sometimes when that gets out of balance, it has caused some anxiety and irritability.

Another thing that happens is that some people with a specific damage in the limbic system (part of the brain that affects a lot of emotions and such) when they start B12, especially AdoCbl. If the person is not taking l-carnitine fumarate, the AdoCbl effect often isn’t too intense and tends to end in a few days as with AdoCbl it is a one or two time change usually, doesn’t increase with the next AdoCbl dose and wears off after a while. However, If a person takes even a small dose of carnitine and goes through the roof with anxiety, panic, fear , anger etc. Interestingly sometimes TMG can take the edge off, shifting the balance like MeCbl. It is possible to microdose carnitine. There are those who have managed to microtitrate the carnitine and find that the anxiety diminishes over time as the nerves appear to heal.

Does any of this sound like it is similar to yours. It isn’t a BAD sign. It’s an indication of severity of deficiency and some of the damage which MIGHT be healable.
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
I may just refer to the links posted by @ahmo as well.
Another thought too is that it is suggested to drink a full glass of water, (maybe 6 oz) with the tabs.
And maybe this gets addressed in one of the links but I'm wondering how potassium may affect sodium balance.
 

girlfromeurope

Senior Member
Messages
131
Hi ahmo
thanks for your help
Do you mean you take 2000 mg potassium 2-3 times a day?
That seems a lot
I don't dare taking that much as I have adrenal problems.
I don't take any other b's or other things that can decrease potassium more.
 
Messages
88
Location
Canada Niagara Falls
sounds just like me for many years and I'm always much more sadened when younger people get this. It is so hard at the best of times to cope but not imposible. your tinitis is getting worse you say? Any Chronic sinis infection? These two symptoms are what it all cropped to the surface and got worse after my major EBV Mono infection I fought for over 6 months in 1998. Please use rest and learn to do what you can in a position that helps your upper blood flow Head/Chest Heart. back in 2011 I was mostly bed bound but now I'm out of my bed to do limitied non exsertional work... cooking dishes that sort of thing . I limit my time up on my feet and rest accordingly. I also try to get exra rest/sleep nightly. I have just started back painting and Model work profetionally and do most of this in a supine position on my bed with pillows and a higher dose of Beta blocker helped to get my off high blood presure meds.

Keep you chin up and know your not alone in this keep reaching out. Its boards like this that lead me to my path/jurney to coping with this nasty illness but I like to think it's almost tamable or at least we can get to know our limits better by listening to our bodies so much morew than most.

I see it this way my head fluids are not draining properly and your autonomic nervous center is being signaled for emergency. I used a heart rate monitor to help me get to know this type of mess I'm in and sort it out... don't get me wrong I'm still learning every day of my limits but it helps to know these vital signals are really out of wack when we do the simplest of things. I get hot flashes when I'm on my feet too long or sitting up in a straight up chair.So this is a great signal I need to get in that inclined position for awhile. If I go too long in upright position I am exausted and I feel my neck glands swelling to a point of great pain right under the ear/back Jaw.

I have no doctors helping me on this end accept one immuneologist saying she thinks I have an auto immune disease that science has yet to find.
She has seen that my lung oxygen intake is really off and has seen my weakness on sme visits. Of course it helps that she was just dianose with MS two years ago so she has some understanding to our plight now.

So the only meds I take because I cant aford anything else is my thyroid medication and the Beta blocker per day.
I have tried some Vitamans E and D and taken B12 when I could afford them before but they really didnt help as much as the rest and positioning has.

I also watch how much I eat too per meal and of course what I eat is so inportant to our gut. Not taxing the gut with heavy meals per siting is helpful in our fluid circulation too and helps the bowel as most of us have IBS issues as I have since this all started.

well I hope I've helped in any way GFE.

Gary K
 
I take about 12mg B12 and 200mcg methylfolate. At one point, I was taking 6-7g per day of potassium, but then cut back on B1, B2, and B3 and now take 3-4g potassium per day. You might try reading up on Yasko's forum - there's a lot of information about some people needing lithium orotate with B12. With high doses of B12, your body can dump its lithium and you'll feel awful. I take about 6mg per day of lithium orotate.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Hi ahmo
thanks for your help
Do you mean you take 2000 mg potassium 2-3 times a day?
That seems a lot
I don't dare taking that much as I have adrenal problems.
I don't take any other b's or other things that can decrease potassium more.

Yes, that's what I've used when necessary, not routinely.

For both gfe and @GaryK, I've just been reading this thread re supps for anxiety. The ones in the first pages were not good for me, but on this last page, the suggestion for arginine is interesting. You might find it useful. And there's this:
Sinusitis and Anxiety Symptoms Link

One other important thing to consider about the close proximity of the sinuses to the brain is that the arterial blood supply for the brain's amygdala actually runs directly through the sphenoid sinus prior to arriving at the amygdala.

The amygdala's blood supply comes from the anterior cerebral artery, which is a branch off the internal carotid artery that runs through the sphenoid sinus.

Thus pro-inflammatory cytokines, and pro-inflammatory bacterial toxins like LPS, deriving from a sphenoid sinus infection/inflammation and entering the bloodstream will run directly into the amygdala via this anterior cerebral artery.
http://forums.phoenixrising.me/inde...symptoms-with-three-supplements.18369/page-15

So I tried the protocol and the first week I felt great. My anxiety and depression were suddenly gone.

But then I started feeling awful and got low potassium symptoms

This sounds like it might be what Dr. Ben Lynch, MTHFR expert, describes. He recommends using B3 to slow down the reactions in the link below. Best to you, ahmo

http://mthfr.net/methylfolate-side-effects/2012/03/01/
There appear to be three types of responses to methylfolate:

FIRST: A person who can jump on methylfolate and feel absolutely wonderful. The only down side they experience is why didn’t they know about methylfolate before?!

SECOND: A person starts methylfolate has an amazingly incredible week where they are happy, interacting and alert. Then the second week comes and they switch to wanting to hide in a room by themselves or literally throw dishes across the room out of anger. Or they may become bed ridden from muscle aches, intense headaches or joint pain.

THIRD: A person takes a small amount of methylfolate and feels all the methylfolate side effects right out the gate.
 
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liverock

Senior Member
Messages
748
Location
UK
Hi @Gfe
Undermethylation goes hand in hand with high copper tissue levels which can cause low cellular potassium uptake.
Getting the copper/zinc ratio more balanced can increase cellular potassium uptake. Your tinnitus and acne are also symptoms of lower zinc levels.
If you decide to try zinc supplementation then be careful and start with low dosages to prevent a large influx of copper into the bloodstream initially.
These articles explain more fully.
http://www.malterinstitute.org/potassiumtox.pdf
http://www.tvernonlac.com/copper-toxicity.html
 
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barbc56

Senior Member
Messages
3,657
Are you seeing a physician? I couldn't tell from your posts or either missed it with this with my foggy thinking today.

Low potassium is very dangerous. I had low sodium which is another electrolyte and was h ospitalized. It turned out that it was a medication and when switched to another my sodium level became normal. My sodium as well as other electrolytes are monitored but after five years have not lowered.

I was also B12 deficient, had the shots but it did not help other than knowing that my B12 was normal.

I don't usually post on this forum but when I saw the low potassium, I could relate.

Good luck.
 

girlfromeurope

Senior Member
Messages
131
Sometimes it seems that taking potassium makes me feel worse.
Can you get depressed from taking too much potassium?
I read that symptoms of high and low potassium are the same, and I get depressed from low potassium.
 
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PeterPositive

Senior Member
Messages
1,426
It sounds unlikely that potassium alone could worsen your depression symptoms, at least not directly. Maybe it is upsetting your GI tract which in turn can add more stress on the nervous system. It's difficult to say, everyone reacts differently.

I personally have surrendered to always find a correlation between worsening of the symptoms and food or supplements I take. I used to blame those as soon as would get worse, only to understand later that it was unlikely. Of course if the phenomena persists on each occasion you take potassium, something IS going on and possibly your body is trying to tell you that it doesn't appreciate it.

Best of luck
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
gfe,

You said adrenal problems...primary adrenal sufficiency is associated with too much potassium, and taking more can be dangerous if that's what you have. Please be careful!
 

Lou

Senior Member
Messages
582
Location
southeast US
Sometimes it seems that taking potassium makes me feel worse.
Can you get depressed from taking too much potassium?
I read that symptoms of high and low potassium are the same, and I get depressed from low potassium.

Hi GFE.

My experience is you should definitely not supplement K at 500mg per dose. There's a reason most brands come in 100mg or less tablets/capsules. It's a pain, but if you require, say 2000mg K per day, try to find way to dole it out over long period.

One possible way is to get capsules, empty 20 (if 100 mgs ea.) into thermos of water and sip on it throughout day. Good luck.