Constant tingling.. Maybe it is not Potassium deficiency?

[Mij]

Hi there Red,

Just thought I would give an update since you have been so kind with your thoughts with a lot of my questions. I caved and got a serum Potassium test, came back at 4.2 with lab range 3.5-5.2. Now that is with tracking potassium in Fitday and aiming for 4000 mg from food and taking an additional 3 x 99mg supps. I can't imagine how low it would be if I were not doing that. On Friday evening I did start to experience gastric upset, and what felt like stomach cramping. I forced food down and it finally mellowed out. But then Saturday it was the same... my guts felt sore and the muscle spasms continued. Yesterday I woke with a terrible headache... All of these things point to low potassium. I was hoping that my serum would show much lower than 4.2 so I could be sure it is potassium we are dealing with, but I would expect it to be much higher from all the food and supplements in the absence of forced methylation.

Also, I noticed that on my most recent and all my old serum tests, my Alkaline Phosphatase shows on the very low end of range. Like I think the low end is 30 and I am at 32 out of 150. I did a quick google and it looks like that can be because of B12 or B6 deficiency. Interesting.

Everyone keeps saying the Jarrow formula is no good, but if it weren't working for me I would expect my paraesthesia to return, but it has not. I wonder if it works just enough for me? Who knows, I will switch to Enzymatic Therapy just to be safe.

Any thoughts you might have on my Potassium reading would of course be welcome.

The obvious question is, do you know where your B12 levels are at? It just might be that you are low in Mg, Magnesium and P5P which should be taken at the same time in order to be effective. I read this in my book, Autism: Effective Biomedical Treatments.

 

[Victronix]

So, since I jumped back in to a methyl protocol, about 1.5 weeks ago after a few week hiatus, I have near constant burning/tingling. What's confusing is that the burning and tingling is one of my dominant deficiency symptoms so it is hard to tell if I am not taking high enough dose to make the tingling go away or if the methylation is causing Potassium deficiency which I understand can cause itchy/tingling/burning skin.

I am currently taking 800mg-1600mg metafolin, B complex, 1000mcg methyl (Jarrow) and tons of co-factors.

Now, this morning I woke with no tingling, but by mid morning it arrived. I ate a banana and then took the folate. An hour passed, I took the B12 with some other food I am not remembering now. The tingling got a little worse. Then I ate about 14 oz of potatoes (somewhere around 2000mg potassium) and it didn't fix a thing. Certainly if such a high dose of potassium didn't make the tingling subside it has to be caused by something else?? Anyone have thoughts?!

I bet if you switch to Enzymatic Therapy you will notice the difference. I don't think it would hurt to increase to 2000 mcg, but that's your call.

My experience with potassium deficiency has been that there are a number of other symptoms also, like muscle cramping, insomnia, etc. But potassium deficiency (perhaps also magnesium) did cause my feet to feel freezing cold, mainly in the evenings. Taking it has helped that, as has including a little more magnesium -- not doubling the dose or anything, but just a pinch more -- and when I stop taking potassium, the icy feet come back.

Magnesium is best taken at least twice during the day, so it can be better to divide up doses. Magnesium deficiency can apparently lead to potassium deficiency also, and then it gets confusing.

Good luck!

 

[Crux]

my Alkaline Phosphatase shows on the very low end of range. Like I think the low end is 30 and I am at 32 out of 150. I did a quick google and it looks like that can be because of B12 or B6 deficiency. Interesting.

A low alkaline phosphatase may also indicate zinc deficiency.

 

[Phred]

The only other persistent symptom that I could potentially relate to Potassium is twitching in one eyelid which has been going on for about a week. It twitches so hard that others can see it.

I was watching a video (don't remember what it's called) but they were talking about magnesium deficiency. They specifically mentioned the eye twitch as being one of the symptoms.

I can tell you I've had that eye twitch off and on for years. I didn't think it was that bad until one day I saw myself in the mirror when it was happening and realized, "Oh my God, others can SEE this!" Anyway since I've been supplementing magnesium I have not had one eye twitch.

I do supplement quite a bit of potassium throughout the day too. Not sure of exact numbers.

 

[thegiantess]

@ Crux
Yah, it seems that it is indicative of some sort of nutrient deficiency. It is just a matter of trying to figure out which one! I try to balance my Zinc/Copper, but it is a little difficult to be sure you're achieving that without testing. I eat a fair amount of liver and dark chocolate, but not tons of Zinc containing foods like shellfish. Tho, I do supp with 50 mg Zinc 2 times per week. Have you had any nutrient/mineral testing done that you would recommend?

 

[thegiantess]

The obvious question is, do you know where your B12 levels are at? It just might be that you are low in Mg, Magnesium and P5P which should be taken at the same time in order to be effective. I read this in my book, Autism: Effective Biomedical Treatments.

I sure don't. I had them tested back in November when I started this whole ordeal. At the time it tested high in the absence of supplementing. That is what led me to be further diagnosed as having a functional deficiency. It seems silly to test B12 when you are actively supplementing. It will just reflect the supp value and not what is actually available. At least that is my understanding.

 

[triffid113]

I measure my blood pressure to determine if I need potassium. Not sure if it would work for everyone - I have 3 genes causing high b.p. Anyway if the lower number is elevated it is from too much salt (I am salt sensitive, doesn't take much to be 'too much') and too much salt will also affect the higher number, but it is actually more affected by low potassium. So if your bp is 140/83 then the main thing you need is more potassium, whereas if it is 140/90 you have a salt problem as well as being low on potassium. I take 500mg potassium powder in a beverage. You should not take potassium if you have any kind of kidney problem including a urinary tract infection because you will have trouble excreting it and it can cause a heart attack. The one I take is potassium gluconate powder from Now

 

[mominmo]

I started the Active B12 protocol 7 weeks ago and noticed warm tingling, burning sensations in my hands, feet, mouth and strangely-- the tip of my nose. I also had headaches and increased thirst and dry mouth. When I realized this was a potassium deficiency, I started eating potassium rich foods and supplementing with potassium. Nothing changed. In fact, even when I was taking and eating a lot of potassium, I got worse. I had indigestion and malabsorption symptoms on top of everything else and I was miserable. The night sweats that had probably contributed to my hypokalemia got worse, too. Then I found this article on the treatment of hypokalemia.

The article explained that the potassium I was taking in (which was probably not being absorbed because of the GI distress) would only increase cellular potassium and not serum potassium. The doc in the article suggested salt substitute (about 1 to 1 1/4 tsp per day) as the best treatment. I had bought some of this, but I'd quit using it because I was taking in so much other potassium. Within hours of taking it, the dry mouth, frequent urination, and GI symptoms were gone. The night sweats disappeared immediately, too!

Because I was doing so poorly, I had not been using the Jarrow 5000 mcg for a week. Once the potassium symptoms were managed, I decided to take it again. The burning, tingling symptoms in my hands, feet, mouth and nose continued and worsened (they weren't eliminated with the potassium) and I had the return of a symptom I'd forgotten about after taking Jarrow for a few weeks. The front of the roof of my mouth feels like it's had a pizza burn. I noticed this within a couple of hours of taking the Jarrow and it's persisted now despite not taking it for 36 hours.

I'm wondering if anyone has suggestions for me. I don't have blood work at all. I started the B12 thinking it was no big deal and it set off a firestorm of symptoms. I wish I would have had testing before I started it. Now I feel like the information will be useless. I would like to have my thyroid tested, but I wonder if low levels would recover with adequate B12. I've ordered the Enzymatic Therapy. Will chewing it, rather than using it sublingually be effective? I'm concerned that maybe I'm reacting to some additive in Jarrow. The burning/tingling symptoms persisted even when I was taking 800 mcg of folate and avoided folic acid, so it doesn't seem to be donut hole deficiency. I'm taking 65mg of iron, too. I've been anemic in the past and have read that increased B12 can drop iron levels as well as potassium. Do you think these are symptoms of deficiency or healing or? Thanks in advance for your thoughts.

 

[Mij]

Momino,

I don't know what to tell you except my B12 levels are at 217 and I had no symptoms until 10 days ago when I stated taking sublingual B12 and Metafolin. The roof of my mouth and tongue started burning (no tingling) the day after taking these supplements and now I have severe vertigo and weakness in my calves. I think it may be viral but what a coincidence.


I'm awaiting my B Complex in the mail so I havent' been taking everything I should with the B12 and Metafolin. Are you taking a good B Complex? Do you have CFS or ME?

I also have low ferritin.

 

[mominmo]

Mij, That's interesting that your symptoms started after the B12 and metafolin, too. I don't have CFS or ME. I thought I had MS until I started having atypical symptoms that are more consistent with B12 deficiency. I couldn't find anywhere else to ask questions about the protocol. I hope it's OK that I'm posting here!

That's definitely a coincidence, but I wouldn't be so sure it's viral. I had dizziness prior to starting the protocol, but it was worse for a while. It's gone now. I've had muscle twitches for years and they became severe after the protocol. Now after using potassium chloride, they're gone! I'm definitely on the right track. I just wish I knew what was causing the burning and tingling. It's much different than anything I experienced prior to starting B12. I read that burning in the mouth is a thiamine deficiency, but I'm taking a good B supplement without folic acid. I haven't started the metafolin again. I'm taking 65mg of iron. I wonder if that isn't enough? Are you taking iron?

 

[Crux]

thegiantess;

Yeah, Alk Phos, can mean many things, I guessed that because it seems to occur often, especially with restricted diets.
Mine went down but not out of range, and I had symptoms. ( I've developed osteoporosis, and I take cortisol which wastes zinc, so that was my big clue.) Zinc supplementation did increase my Alk Phos, though. I'm not sure how long it took, there was a year's time between each comprehensive metabolic panel tests.

A doc told me that serum zinc measuring is inaccurate, so I didn't ask for it. Hair mineral analysis has been used, but many contaminants can affect results. ( It still may be worth a try if done properly, and compared to other tests.)
I've read that urinary zinc may be increased in zinc deficiency.

Another possible reason he lists is excessive vitamin D intake. ( thought I'd mention that in case.)

It looks like your dosage of zinc should be OK. ( I take 15mg. each evening...helps sleep too.)

EDIT: Thanks for the heads up about the link to Dr Kaslow's site being suspended, Victronix.

Here's a link to "Livestrong" that provides the same info. and uses Kaslow as a reference.
http://www.livestrong.com/article/502683-how-to-treat-low-alkaline-phosphatase/

 

[Mij]

I dont' see any problems with you posting here, there are many people here who have neuro symptoms but not CFS or ME. Before I was diagnosed with ME my GP and neurologist thought I had MS. MS was ruled out eventually.

Interesting about the thiamine deficiency causing burning in the mouth. I'll have to wait and see if it disappears after I take the B Complex.

I have good success raising my ferritin with 18-25mg iron bi-glycinate or picolinate taken with vitamin C. From what I've read is that it's not necessary to take more than 18-25mg iron at a time because our body can only absorb so much at once. Many years ago a doctor rec'd I take Palafer 300mg (!!) it was so gross and caused me all sorts of intestinal problems and I was absorbing more iron when I switched to 18-25mg bi-glycinate.

 

[Crux]

Hi All;
From what I've read about and experienced with B12, it helps with utilizing iron. But having enough stomach acid seems to be a more important factor for iron absorption. Maybe this is why mominmo responded better with taking the potassium chloride ( salt substitute). Chloride is used to make hydrochloric acid.

B12 does aid thyroid function, it increased my free T3, but I've found that I'm needing a very small amount of natural desiccated thyroid now. Some people with B12 deficiency and hypothyroid have found that they needed to reduce thyroid meds., but not necessarily stop them.

When beginning the B12 protocols, it is very difficult to figure out whether one is having startup effects or side effects. If the tissues in the mouth are inflammed from the sublingual, it may be from the citric acid. ( With B12 deficiency, there can also be mouth tissue inflammation.) The increased inflammation may heal in time if it is from B12 deficiency.

There are people with B12 deficiency who will have elevated folate in the serum. Enough B12 is needed to use folate. People with this situation may need to minimize or even stop folate supplementation until there is enough B12 to balance it. ( I'm still having this problem, even after years of B12 supplementation.)

Personally, I've found folate supplementation, in higher dosages, to be inflammatory. I seem to have trouble metabolizing it. ( not sure why, could be genetic)

It looks like many folks here may need to carefully observe their response to folate. Some are needing high dosages, but others like myself, may need very little.

Mij, Hi,
Severe vertigo has been one of my B12 deficiency symptoms. I found it takes about a month to resolve, when I take enough everyday. During that month, it did return, and sometimes it seemed worse.

mominmo, Hi,
I've also had burning and tingling, when nerves are healing, it can intensify. In time, it will get better.

I do want to caution that taking high dosages of some of the B's may irritate damaged nerves.

 

[Lotus97]

Personally, I've found folate supplementation, in higher dosages, to be inflammatory.

Methylation can cause or exacerbate inflammation possibly due to virus or infections or other health conditions.

 

[Lotus97]

I started the Active B12 protocol 7 weeks ago and noticed warm tingling, burning sensations in my hands, feet, mouth and strangely-- the tip of my nose. I also had headaches and increased thirst and dry mouth. When I realized this was a potassium deficiency, I started eating potassium rich foods and supplementing with potassium. Nothing changed. In fact, even when I was taking and eating a lot of potassium, I got worse. I had indigestion and malabsorption symptoms on top of everything else and I was miserable. The night sweats that had probably contributed to my hypokalemia got worse, too. Then I found this article on the treatment of hypokalemia.

The article explained that the potassium I was taking in (which was probably not being absorbed because of the GI distress) would only increase cellular potassium and not serum potassium. The doc in the article suggested salt substitute (about 1 to 1 1/4 tsp per day) as the best treatment. I had bought some of this, but I'd quit using it because I was taking in so much other potassium. Within hours of taking it, the dry mouth, frequent urination, and GI symptoms were gone. The night sweats disappeared immediately, too!

So potassium chloride worked for you, but which type of potassium supplement did you try prior to that in which you found ineffective?

 

[mominmo]

Thanks so much for the responses. I haven't had any testing. I was pretty sure I had MS and knew I wouldn't take the disease modifying drugs. I didn't want the diagnosis on my records, especially if I could stop the disease with diet and supplements. I am willing to see a doctor now, but I'm wondering if he will be just as confused as I am about what's causing what--especially since I've been on supps for weeks.

@Lotus, I was taking potassium gluconate and had increased my dietary intake a ton with no effect. The symptoms haven't returned since I started the No Salt. I have wondered if I have low stomach acid in the past, but I'm not sure.

Crux, I'm really hopeful that I'm experiencing healing! It's definitely not intolerable right now, but the hypokalemia was. My mouth isn't red at all. It just feels like the roof of mouth has been burned. It's better today and I started the Enzymatic B12, just 1,000. Do you think that's adequate or should I be taking 5 to get results? I was trying to find a way to get healing without as many side effects.

 

[Crux]

mominmo;

Hi, I don't know what dosage you may need, but it looks like a good idea for you to be slow and careful, even with having neurological symptoms. Hypokalemia can be deadly.

As you know, your gums need to heal. Hopefully, the Enzymatic Therapy won't irritate them.

Best to You!

 

[Red04]

I started the Active B12 protocol 7 weeks ago and noticed warm tingling, burning sensations in my hands, feet, mouth and strangely-- the tip of my nose. I also had headaches and increased thirst and dry mouth. When I realized this was a potassium deficiency, I started eating potassium rich foods and supplementing with potassium. Nothing changed. In fact, even when I was taking and eating a lot of potassium, I got worse. I had indigestion and malabsorption symptoms on top of everything else and I was miserable. The night sweats that had probably contributed to my hypokalemia got worse, too. Then I found this article on the treatment of hypokalemia.

The article explained that the potassium I was taking in (which was probably not being absorbed because of the GI distress) would only increase cellular potassium and not serum potassium. The doc in the article suggested salt substitute (about 1 to 1 1/4 tsp per day) as the best treatment. I had bought some of this, but I'd quit using it because I was taking in so much other potassium. Within hours of taking it, the dry mouth, frequent urination, and GI symptoms were gone. The night sweats disappeared immediately, too!

Because I was doing so poorly, I had not been using the Jarrow 5000 mcg for a week. Once the potassium symptoms were managed, I decided to take it again. The burning, tingling symptoms in my hands, feet, mouth and nose continued and worsened (they weren't eliminated with the potassium) and I had the return of a symptom I'd forgotten about after taking Jarrow for a few weeks. The front of the roof of my mouth feels like it's had a pizza burn. I noticed this within a couple of hours of taking the Jarrow and it's persisted now despite not taking it for 36 hours.

I'm wondering if anyone has suggestions for me. I don't have blood work at all. I started the B12 thinking it was no big deal and it set off a firestorm of symptoms. I wish I would have had testing before I started it. Now I feel like the information will be useless. I would like to have my thyroid tested, but I wonder if low levels would recover with adequate B12. I've ordered the Enzymatic Therapy. Will chewing it, rather than using it sublingually be effective? I'm concerned that maybe I'm reacting to some additive in Jarrow. The burning/tingling symptoms persisted even when I was taking 800 mcg of folate and avoided folic acid, so it doesn't seem to be donut hole deficiency. I'm taking 65mg of iron, too. I've been anemic in the past and have read that increased B12 can drop iron levels as well as potassium. Do you think these are symptoms of deficiency or healing or? Thanks in advance for your thoughts.

I would suggest:

1. switching to EnzyMB12 and DONT chew it.

2. Consider titrating in AdB12. DONT chew it.

3. Consider titrating past 800mcgs of methylfolate "to effect". To effect means "until you see a major change". I don't think 800mcgs with ineffective Jarrow has ruled out donut hole deficiency.

4. Keep monitoring potassium. The potassium symptoms should react to potassium supplementation fairly quickly. I am not well versed in potassium absorption. I don't recall anyone here having trouble with it off the top of my head.

How much are you supplementing with actual supplements (non dietary) ?

 

[Victronix]

@Lotus, I was taking potassium gluconate and had increased my dietary intake a ton with no effect. The symptoms haven't returned since I started the No Salt. I have wondered if I have low stomach acid in the past, but I'm not sure.

That's really interesting. I wonder what it is that's in the No Salt that is different. I have a bottle from long ago here -- it has potassium chloride, potassium bitartrate, adipic acid, silicon dioxide, mineral oil and fumeric acid.

I am doing potassium gluconate, and at times it seems like it won't work or isn't enough, and I've had to increase it. I'm now taking the 1/2 teaspoon 4x per day and that mostly address things, but I know many people on here have taken more.

BTW, that link to the article didn't work for me. I tried pasting the url in, but it still didn't work. I also tried accessing the main site, but that is not available either.

 

[Crux]

Victronix;

Hi, The chloride in potassium-chloride may help absorption for people with low stomach acid. Some people take hydrochloric acid supplements too. Some milder digestives are; lemon juice diluted in water, and apple cider vinegar diluted in water.

P.S. Thanks for bringing up that the link didn't work, it's been suspended, don't know why. I've gone to Kaslow's site for years.... Anyway, I posted another one that uses him as a reference, but the site is still inaccessible. (?)