Active B12 Protocol Basics

TinaT

Senior Member
Messages
291
With the lithium after 5+ years my homeostasis is working far better than ever before in my life
I have purchased lithium based on your suggestion. I've been waiting to try that bc my body is just so sensitive, and I'm already doing a lot.

What has had me confused is that the Cleveland clinic website says that severe low potassium can cause low blood pressure (which makes no sense given that potassium normally lowers BP). But I've had other I think classic low potassium symptoms with the low BP, like extreme muscle twitching and spasms, constipation, unusual thirst, and extreme / unusual tiredness like I'm going to pass out. Sometimes I have low BP without those symptoms except food not moving happens every night.

https://my.clevelandclinic.org/heal...in-your-blood-hypokalemia#symptoms-and-causes
The low BP is a mystery I guess. I think it relates to electrolytes but I haven't been able to figure it out. I've taken potassium and sodium, usually in quick succession but not always. It's hard to tell what is doing what.
 

TinaT

Senior Member
Messages
291
Low potassium can cause gut paralysis. It's been my "oops, time for more potassium" signal when my healing increases.
That's what I think is happening. From low potassium. And I think I'm having an unusual reaction that the low potassium is causing low BP. However -- very scary to take potassium with BP at 96 or something, because I could be wrong.
 
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TinaT

Senior Member
Messages
291
Low potassium can cause gut paralysis. It's been my "oops, time for more potassium" signal when my healing increases.
How much do you take when this happens? I mean when you notice the gut paralysis?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
How much do you take when this happens? I mean when you notice the gut paralysis?
I( take 200-300 mg in water and sip it for 20 minutes or so. If it is happening each day I titrate up by 100-200 mg a day. The total spread across 5-6 doses during the day. I haven't had to take a dose like that in at least a couple of years now. Low potassium happens when you increase the amount of methylfolate or whatever insufficiency was stopping the cell making
 

JES

Senior Member
Messages
1,374
According to the world leading reflux doc, the available evidence that I've been able to find, and my own experience, vagal nerve exercises are useless.
According to my own experiences, not exactly useless. I notice temporary improvements from various vagus nerve stimulating activities such as cold showers, singing/playing an instrument, also breathing exercises to a certain extent.

The tricky bit is whether one can really sustain these improvements following exercises. The biggest improvement I noticed was after wearing a tVNS type device attached to the ear - almost complete resolution of all symptoms for 24 hours. Unfortunately I have not been able to make these improvements permanent, but the evidence for vagus nerve stimulation is becoming quite strong in relation to chronic diseases like Parkinson's.

Also -- Dr Jamie Kouffman and Dr Jonathan Aviv, both of whom I consulted, and basically the leading reflux docs in the world (and authors of several studies and books on reflux) both said I had vagal nerve damage from the surgery causing reflux.
Which I agree with as a good candidate explanation. I just don't find the cause for the vagus nerve damage from a surgery could be B12 related - B12 woud unlikely deplete that much from a single or couple of doses of nitrous oxide and if it did, the effects from it would still take time to manifest and wouldn't be present as a big worsening right away as you said you noticed after the root canal.

Speaking of which, it seems nitrous oxide is rarely used at all these days by dentists and replaced by other, safer alternatives. So we are basically speculating about something (nitrious oxide) that we don't know if it was used causing something else which we don't know was caused by that (B12 deficiency) causing something else we don't know for certain (vagus nerve damage). Let's say that's a chain of events that seems rather unlikely given the million of other possibilities.

Why wouldn't B12 affect the vagal nerve? Are we saying B12 affects other nerves, but not the vagal nerve? That doesn't make any sense. And if B12 affects the vagal nerve -- then B12 can cause gastroparesis and associated constipation and reflux.
I don't know. There doesn't seem to be much evidence about B12 affecting specifically the vagus nerve, but what I would certainly find odd is for only the vagus nerve becoming affected by B12 deficiency. B12 deficiency would most likely cause other obvious nervous system symptoms such as peripheral neuropathy and loss of sensation. If you don't have those, it would actually be evidence against B12 and for some more specific issue with the vagus nerve rather than B12 deficiency, which affects all nerves.
 

TinaT

Senior Member
Messages
291
deficiency would most likely cause other obvious nervous system symptoms such as peripheral neuropathy and loss of sensation
I have many other symptoms from the lists. Reflux and abdominal distension (and Tinnitus) just happen to be the worst.

I had a horrible reaction to all 3 (or 4?) Vagal nerve stimulators that I tried.

And you had these devices work *for reflux*? Whatever they did for you, they did not do for me. I have *extensively* tried every other remedy you could possibly suggest other than (thank God) I refused ppis.

I am guesstimating the rough timeline when I had procedures versus started seeing docs for reflux. I have many other risk factors for low B12, which you would have to read my prior comments to find.

My opinion of all doctors has greatly declined. But I'm going to assume that when the two leading reflux docs basically in the country say that nerve damage from surgery caused my reflux -- that's what caused it.

And again it would just make no sense at all for B12 not to affect every nerve, including the vagal nerve (about which, by the way, Dr Kouffman explains there is very little actual research or understanding).

And again last thing -- proof is in the pudding. B12 is helping everything including especially reflux, as I sit eating ground beef and tomato sauce with other stuff in a bowl -- would have had me hacking at the first bite one month ago.
 

JES

Senior Member
Messages
1,374
had a horrible reaction to all 3 (or 4?) Vagal nerve stimulators that I tried.
They did work in the beginning. I don't suffer from reflux, but I have a whole bunch of other nervous system symptoms (autonomic neuropathy, POTS, heart rate too high, reversed circardian rhythm, you name it...). The ear vagus nerve stimulator solved most of these for 24 hours, but then it seemed to be losing most of its effects within a week, so it did *something*, but the problem with these treatments is always to get sustained improvement.

My opinion of all doctors has greatly declined. But I'm going to assume that when the two leading reflux docs basically in the country say that nerve damage from surgery caused my reflux -- that's what caused it.
Which is the part I agreed with - the vagal nerve damage causing your reflux :).

And again it would just make no sense at all for B12 not to affect every nerve, including the vagal nerve (about which, by the way, Dr Kouffman explains there is very little actual research or understanding).
Which was also my point. B12 would probably affect every nerve, causing not just vagus nerve symptoms, but symptoms with every nerve, especially distal nerves in your legs with neuropathy/paresthesia and a whole bunch of other symptoms. So it would not be causing you vagus nerve specific symptoms only.

Like let's say before taking potassium, my BP might be 106 over whatever. Then I take 300 mg of potassium, and my BP drops again to 98 over whatever. What I think is gastroparesis continues to be worse than before the B12 supplementation (when I had it, but not as bad). Basically, I can't seem to handle enough potassium to resolve the constipation without way too low BP. I guess it's possible that the low K is causing the low BP and just moving so fast that it continues dropping even after supplementing? But that seems very risky to assume without testing.

I'm just trying to keep my BP in a normal range. Do I have to perfect potassium to heal? I'm not sure how I can possibly do that with the scary low BP in experiencing (this is all new with the shots -- never a problem before -- I'm also taking other supplements that could lower BP including buffered C with potassium).
No. Your body regulates homeostasis of sodium and potassium itself, otherwise we would all have become extinct since no one eats to maintain an exact balance of electrolytes. The body basically controls this through various negative feedback loops and when potassium or sodium intake is decreased, your kidneys will excrete less into the urine and vice versa. This is very tightly regulated so that blood potassium or sodium levels always stay within a certain range and if they deviate much you get something like hyponatremia, which is an acute and life-threatening condition.

My neurologist recommended high intake of salt for my POTS and autonomic nervous system issues, basically mixing one liter water with one teaspoon of salt and drinking that throughout the day. It didn't do much for me. Didn't notice much positive nor negative effects from it. Most people survive fine with little salt.
 

Idie

Senior Member
Messages
134
How did you do this exactly? Was that 350 every hour? Sounds like a really scary night.

I know the idea is to heal faster but my thought is that it seems better to avoid severe potassium deficiencies. I do eat a very high potassium diet as an almost vegan. I have added meat but very little -- the rest is whole food, plant based.

Right now for lunch I'm eating a "banana sandwich." Basically: banana, 1.5 slices ezekial bread, homemade peanut butter, a little honey, and 1.5 c plain soy milk (not fortified). That's almost / about 1500 mgs of potassium. My breakfast was probably high. And my dinner will be high.


At night, if my BP is getting low, I make a banana smoothie with soy milk, banana, and protein powder. That usually seems to help stabilize my BP. I just can't keep eating so close to bedtime bc that is something that can make reflux get worse again. And that doesn't help the constant bloating.

I did read a refeeding case study where they used a high potassium diet (only). But the guy was getting much lower doses of B12 by injection every day (100 mcg), and iron, for 14 days.
Yes, it was about every 11/2 hours. Today was better with potassium as I have been using tablets with every meal as my base amount. 3 -4 tablets. As to BP—-mine was high when I was low on potassium.
 

Idie

Senior Member
Messages
134
After 5 - 7 years of 5-20 mg of lithium orotate my minerals are closing in on their homeostasis range and that includes potassium and potassium all over the place with CBL-C disease. With the lithium after 5+ years my homeostasis is working far better than ever before in my life
@Freddd,

I’ve been meaning to ask you about the lithium. Do you feel you have it optimized after this long? Also, when you titrated the lithium, I assume you were trying to find the lowest dose that worked OR were you titrating because of potassium demand?

Finally, I noticed a few comments on these threads regarding lithium dumping. Do you think you simply had a lithium deficiency or do you believe it was a result of lithium dumping due to genetics? I wish I had your 50,000+ hours of knowledge and your instincts——incredible.
 

TinaT

Senior Member
Messages
291
Which was also my point. B12 would probably affect every nerve, causing not just vagus nerve symptoms, but symptoms with every nerve, especially distal nerves in your legs with neuropathy/paresthesia and a whole bunch of other symptoms. So it would not be causing you vagus nerve specific symptoms only.
But, with respect, I never said that was my only symptom.
Most people survive fine with little salt.
Probably not outdoor distance runners in Florida though.

Thanks for your explanation about sodium / potassium. That was helpful.

My scientist friend was concerned that potassium water would basically wash away sodium. My concern was that necessary salt (see: I'm a runner) might somehow offset potassium.

After talking to thirty doctors, reading countless studies, forums, and quite a few books, I'm pretty sure no one really knows wtf is going on.

I mention earlier in this thread that I have several more than risk factors for a B12 deficiency. I am certain that I would have been very low. I had extremely low intake of B12 as a whole food, plant based vegan, and without supplementing, for over a year. Plus high doses of pepsid. It's like my friend said: it would be a miracle if you didn't have a deficiency.

Also covid was probably part of the issue. That may mean that I can't ever heal. But there are some reports of some people healing long covid type symptoms with iron and B12. Take that for whatever it's worth.

The bottom line is absolutely nothing else had helped *at all*. And I'm very defensive of something that has been working -- because I also believe that losing faith can be deadly or at least disabling. So I can't allow anyone to break my faith without strong evidence that this can't or shouldn't work for whatever reason.

And we haven't even discussed iron, which could be as much of the problem. I can't find the very exhaustive iron paper that I read -- low ferritin can cause reflux, IBS, tinnitus and chronic fatigue "like symptoms." That's also what the hematologist told me.

For one thing -- my exercise tolerance has been returning with iron supps and red meat (and / or the B12 and folate). But I'm taking that easy easy -- just doing what I can. Some days are easier than others when you're intentionally screwing with your potassium levels.
 

TinaT

Senior Member
Messages
291
I( take 200-300 mg in water and sip it for 20 minutes or so. If it is happening each day I titrate up by 100-200 mg a day. The total spread across 5-6 doses during the day. I haven't had to take a dose like that in at least a couple of years now. Low potassium happens when you increase the amount of methylfolate or whatever insufficiency was stopping the cell making
Do you normally check your BP when you get this paralyzed gut reaction, before taking potassium? Because right now my BP is low (109 over ?), My pulse rate is high for me (normally below 50 resting). And I have that paralyzed gut feeling after dinner. I've been checking my BP constantly. I never had BP or pulse rate problems before these shots. I did have the paralyzed gut but that had been better (it's worsening -- which I think might be potassium related).

But with this BP, I know from trying the last few nights, if I take 300 mg of potassium, I'll be fighting too low BP all night, eating everything I can find to try to raise it higher again.

I did read some mayo clinic doc on a mayo forum informing someone that low K can cause BP variability. So I still think very low potassium might be my problem. But I just can't bring myself to take potassium with this BP.

My hope is that the potassium will slowly level itself out, as I hopefully improve with B12 / folate treatment. I am eating a high K diet. I mean I don't know what else I can do besides go to the ER every night to get them to confirm my K levels.

It's very frustrating.
 

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TinaT

Senior Member
Messages
291
So we are basically speculating about something (nitrious oxide) that we don't know if it was used causing something else which we don't know was caused by that (B12 deficiency) causing something else we don't know for certain (vagus nerve damage). Let's say that's a chain of events that seems rather unlikely given the million of other possibilities
I forgot to mention there were other risk factors that would suggest B12 as a possibility, including strict whole food vegan diet, no B12 supplements for over a year (and therefore none in my diet), and very little before that year, and high doses of pepsid for over a year.

I was drinking fortified soy milk on and off for a while. Once I stopped, within a few months, all symptoms started becoming a lot worse.

These were my list of symptoms when I started (many of these have gone away even though they were persistent before starting B12). This was the list I wrote for the hematologist:

--tingling in feet that moves to legs. And sometimes other parts of my body.
--abdominal distension
--gets FAR worse with exercise / chronic fatigue type symptoms despite being a passionate distance runner and healthy eater with no health problems for years.
--developing extreme fatigue (slept all night then couldn't stay awake in the morning -- spilled tea on myself after breakfast but fell asleep anyway -- woke up wet an hour later-- didn't even have the energy to change clothes).
--autonomic issues over the past year -- blood pressure going up and down wildly at times despite previous very stable blood pressure. This was usually just after getting sick like with a cold, for a week or two, then BP would become stable again.
--night sweats just started recently even though no history of those.
--insomnia (sometimes caused by supplements but sometimes caused by exercise).
--occasional constipation (I think caused by antacids)
--memory problems / significant word recall issues
--severe physical anxiety unlike anything I've ever had before usually at night. Shaking, strong warmth in my chest, swirl of something feeling all over my torso (scary), like I was going to have a heart attack, frequent insomnia -- all worse after exercise
--heart palpitations at times
--tremors
--tinnitus worsening a lot, even though it should be improving after surgery
--headaches, at times bad, getting worse
--losing a LOT of hair
--taste altered
--smell altered
--burning roof of my mouth -- this was bad and persistent.
--reflux that doesn't improve despite very low acid diet and lots of antacids and drinking high pH water and taking reflux Gourmet. Actually reflux was only getting worse / turned into heartburn. Two reflux experts told me that they thought the reflux was caused by nerve damage.
--tongue looks weird / painful
--recently developed unusual daytime fatigue
--I have never tested positive for covid despite numerous PCR tests
--night terror waking up screaming to the top of my lungs.
--thoughts of death often
--crying / depression often
--getting sick very often (sometimes could have been allergies but much worse than anything ever before)
--no stress besides medical in my life.

ALL of those symptoms were listed across various sources as symptoms of a B12 deficiency. Even the night sweats, just as an example, were listed. I'm going through menopause so it would be easy to assume meno was causing them. However, I strongly suspected that was not the case bc I hadn't had them in the years of perimenopause. And these were bad like 5 times a night for the last few months before starting B12. Those were totally gone after the first shot, along with the roof of mouth burning, and the taste / smell alterations. I thought my husband smelled terrible and my favorite soy milk tasted spoiled even though it wasn't -- I even emailed the company and asked what was wrong. Now that tastes good again. Night terrors gone. Anxiety gone. Depression gone when I've taken enough B12. And minimal at other times. Exercise tolerance improving a lot. Actually thoughts of death gone. Heart palps gone. Tongue pain gone. Mouth still sore though. I haven't noticed memory issues as much (that's hard to tell but I was noticing very subtle memory deficits and haven't lately). Before, BP was variable after getting sick (which I did often over the last year), but then would stabilize, and was stable for several months before I started the shots. Daytime fatigue mostly gone except small windows (30 min) when it seems connected to electrolytes -- and drinking either salt or potassium or both perks me right up. Tremors gone.

Oh I also had glossitis, I think it's called (tongue had distinct glossy look -- my husband confirmed after we both looked at comparison photos with others who had B12 deficiency -- this was very distinct looking bc the little spongy bumps were gone), which can be caused by other things but is also classic for B12 deficiency.

I'm still losing hair. Still have reflux but it's much better (not nearly good enough bc I can't expand my diet without symptoms getting worse -- however I haven't needed any pepsid to sleep since day one of the B12). Abdominal distension is worse. Sides of tongue still hurt. Tinnitus has been almost silent many days -- going up and down but overall WAY down from when I started the shots (this is remarkable bc my surgery was for a perforated eardrum and I had severe Tinnitus after, and have seen an ENT every two weeks for 3 years -- my Tinnitus should have improved within 1.5 years after surgery but it was only getting worse, for which they had no explanation). I still have tingling in my legs and feet.

Insomnia better for two days after shots. Then worse again. I've been spacing my shots 3-9 days apart. Just decided yesterday to try them daily. I started with 500 mcg yesterday -- and I don't think that was enough bc Tinnitus was bad yesterday, reflux a little worse, and I didn't sleep enough last night. So today I'm trying 1 mg.

I've developed new transient symptoms since starting B12 like spots in vision, blurry vision, pins and needles -- these have all just been for a few seconds each. Persistently worse abdominal distension that distinctly seems more watery.
Very low BP that's been fairly persistent (not true before) I might be forgetting something. My understanding is that it's not unusual for new symptoms to appear during treatment.

The other thing is that all of the books I've read (three total, written by doctors, about B12), said that basically B12 is something that you should exclude when there are risk factors with a therapeutic trial. And that's what the hematologist said, too (although he thought low ferritin and dropping iron levels were the more likely cause of some of these issues -- and I started iron supps at the same time as B12). Anyway low B12 iisn't something that you need clear cut proof to justify trying to treat (although I feel the proof is very solid).
 
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Idie

Senior Member
Messages
134
I forgot to mention there were other risk factors that would suggest B12 as a possibility, including strict whole food vegan diet, no B12 supplements for over a year (and therefore none in my diet), and very little before that year, and high doses of pepsid for over a year.

I was drinking fortified soy milk on and off for a while. Once I stopped, within a few months, all symptoms started becoming a lot worse.

These were my list of symptoms when I started (many of these have gone away even though they were persistent before starting B12). This was the list I wrote for the hematologist:

--tingling in feet that moves to legs. And sometimes other parts of my body.
--abdominal distension
--gets FAR worse with exercise / chronic fatigue type symptoms despite being a passionate distance runner and healthy eater with no health problems for years.
--developing extreme fatigue (slept all night then couldn't stay awake in the morning -- spilled tea on myself after breakfast but fell asleep anyway -- woke up wet an hour later-- didn't even have the energy to change clothes).
--autonomic issues over the past year -- blood pressure going up and down wildly at times despite previous very stable blood pressure. This was usually just after getting sick like with a cold, for a week or two, then BP would become stable again.
--night sweats just started recently even though no history of those.
--insomnia (sometimes caused by supplements but sometimes caused by exercise).
--occasional constipation (I think caused by antacids)
--memory problems / significant word recall issues
--severe physical anxiety unlike anything I've ever had before usually at night. Shaking, strong warmth in my chest, swirl of something feeling all over my torso (scary), like I was going to have a heart attack, frequent insomnia -- all worse after exercise
--heart palpitations at times
--tremors
--tinnitus worsening a lot, even though it should be improving after surgery
--headaches, at times bad, getting worse
--losing a LOT of hair
--taste altered
--smell altered
--burning roof of my mouth -- this was bad and persistent.
--reflux that doesn't improve despite very low acid diet and lots of antacids and drinking high pH water and taking reflux Gourmet. Actually reflux was only getting worse / turned into heartburn. Two reflux experts told me that they thought the reflux was caused by nerve damage.
--tongue looks weird / painful
--recently developed unusual daytime fatigue
--I have never tested positive for covid despite numerous PCR tests
--night terror waking up screaming to the top of my lungs.
--thoughts of death often
--crying / depression often
--getting sick very often (sometimes could have been allergies but much worse than anything ever before)
--no stress besides medical in my life.

ALL of those symptoms were listed across various sources as symptoms of a B12 deficiency. Even the night sweats, just as an example, were listed. I'm going through menopause so it would be easy to assume meno was causing them. However, I strongly suspected that was not the case bc I hadn't had them in the years of perimenopause. And these were bad like 5 times a night for the last few months before starting B12. Those were totally gone after the first shot, along with the roof of mouth burning, and the taste / smell alterations. I thought my husband smelled terrible and my favorite soy milk tasted spoiled even though it wasn't -- I even emailed the company and asked what was wrong. Now that tastes good again. Night terrors gone. Anxiety gone. Depression gone when I've taken enough B12. And minimal at other times. Exercise tolerance improving a lot. Actually thoughts of death gone. Heart palps gone. Tongue pain gone. Mouth still sore though. I haven't noticed memory issues as much (that's hard to tell but I was noticing very subtle memory deficits and haven't lately). Before, BP was variable after getting sick (which I did often over the last year), but then would stabilize, and was stable for several months before I started the shots. Daytime fatigue mostly gone except small windows (30 min) when it seems connected to electrolytes -- and drinking either salt or potassium or both perks me right up. Tremors gone.

Oh I also had glossitis, I think it's called (tongue had distinct glossy look -- my husband confirmed after we both looked at comparison photos with others who had B12 deficiency -- this was very distinct looking bc the little spongy bumps were gone), which can be caused by other things but is also classic for B12 deficiency.

I'm still losing hair. Still have reflux but it's much better (not nearly good enough bc I can't expand my diet without symptoms getting worse -- however I haven't needed any pepsid to sleep since day one of the B12). Abdominal distension is worse. Sides of tongue still hurt. Tinnitus has been almost silent many days -- going up and down but overall WAY down from when I started the shots (this is remarkable bc my surgery was for a perforated eardrum and I had severe Tinnitus after, and have seen an ENT every two weeks for 3 years -- my Tinnitus should have improved within 1.5 years after surgery but it was only getting worse, for which they had no explanation). I still have tingling in my legs and feet.

Insomnia better for two days after shots. Then worse again. I've been spacing my shots 3-9 days apart. Just decided yesterday to try them daily. I started with 500 mcg yesterday -- and I don't think that was enough bc Tinnitus was bad yesterday, reflux a little worse, and I didn't sleep enough last night. So today I'm trying 1 mg.

I've developed new transient symptoms since starting B12 like spots in vision, blurry vision, pins and needles -- these have all just been for a few seconds each. Persistently worse abdominal distension that distinctly seems more watery.
Very low BP that's been fairly persistent (not true before) I might be forgetting something. My understanding is that it's not unusual for new symptoms to appear during treatment.

The other thing is that all of the books I've read (three total, written by doctors, about B12), said that basically B12 is something that you should exclude when there are risk factors with a therapeutic trial. And that's what the hematologist said, too (although he thought low ferritin and dropping iron levels were the more likely cause of some of these issues -- and I started iron supps at the same time as B12). Anyway low B12 iisn't something that you need clear cut proof to justify trying to treat (although I feel the proof is very solid).
Tina—-you are all over this and that is good! I just wanted to mention that I was also going through menopause (first time) and a lot of my symptoms were being explained away that it was menopause related—-nope, it was low B12 (except the hot flashes). I inject everyday and I’m glad you decided to do that as well,….when you look back I think you will be happy with that decision, even with all the “start up“ bumps. :)
 

TinaT

Senior Member
Messages
291
inject everyday and I’m glad you decided to do that as well,….when you look back I think you will be happy with that decision, even with all the “start up“ bumps. :)
Thank you!! You have been a shining light and great source of guidance and inspiration. I just knew that something was not right!

Oh and I forgot to mention that I had very very heavy bleeding during my periods for much of the last year. That is listed as a *severe* B12 deficiency symptom on the protocol I listed above.

The gyn said the heavy periods were not normal and ordered an ultrasound to make sure no cancer. When there was no cancer, she had no explanation.

It's so easy for them to claim that meno causes everything! That just made no sense bc peri had been relatively mild for me, and from my reading that suggested meno really should be, too (my periods finally stopped about 6 months ago).

I am happy that many of these symptoms are gone. But this low BP is weird and concerning -- and the water weight gain I think might be dangerous (like for my kidneys, not sure about heart but I'm concerned) if I can't find a way to get that under control. I am increasing methylfolate, like you and Fredd suggested. And I'm just stuck as far as potassium -- I'm never scared to take that when my BP is high. But it's been mostly low... That's different.

I'm honored to be your virtual friend going through this tough time together. And thank you very much for the time that you've spent encouraging me and giving much needed guidance!! 🥰
 

TinaT

Senior Member
Messages
291
Also forgot to mention... Very dry skin and brittle nails .. And that's been getting worse for a couple of years... Also listed as B12 deficiency symptoms on many sources.
 

Idie

Senior Member
Messages
134
Thank you!! You have been a shining light and great source of guidance and inspiration. I just knew that something was not right!

Oh and I forgot to mention that I had very very heavy bleeding during my periods for much of the last year. That is listed as a *severe* B12 deficiency symptom on the protocol I listed above.

The gyn said the heavy periods were not normal and ordered an ultrasound to make sure no cancer. When there was no cancer, she had no explanation.

It's so easy for them to claim that meno causes everything! That just made no sense bc peri had been relatively mild for me, and from my reading that suggested meno really should be, too (my periods finally stopped about 6 months ago).

I am happy that many of these symptoms are gone. But this low BP is weird and concerning -- and the water weight gain I think might be dangerous (like for my kidneys, not sure about heart but I'm concerned) if I can't find a way to get that under control. I am increasing methylfolate, like you and Fredd suggested. And I'm just stuck as far as potassium -- I'm never scared to take that when my BP is high. But it's been mostly low... That's different.

I'm honored to be your virtual friend going through this tough time together. And thank you very much for the time that you've spent encouraging me and giving much needed guidance!! 🥰
Hi Tina

So interesting. I too had very heavy periods and was also tested for cancer, etc. So many of B12/folate symptoms are explained away—-aging, menopause, anxiety, etc. Thinking back, my legs used to ache so bad at night that I lived on pain relievers. I asked several physicians about that—-answer ”oh, well you are just getting older”.I was 40. The pain stopped entirely when I got my B12 levels up. I also had very bad hip pain——once again, shots in the hip but they can’t find anything, etc. Stopped when I got my B12 levels up. I had both of those problems for nearly 10 years before the big crash of B12 deficiency. I think people just can’t believe it has that many symptons. There are always naysayers who I tend to ignore because as my husband always tells people who just can’t grasp it….”look, her deterioration was a naked eye event AND her recovery was too! I had a ringside seat” I think as you get well and things fade you will be surprised how many of them are tied to the deficiency. It is always important to remember that B12 doesn’t act alone and will need a rounded out approach. :)

Not sure if you have watched the YouTube Video called “Diagnosing and Treating a B12 Deficiency”. It has researchers from Cleveland Clinic and a few others of the “bigs”. It is 58 minutes long. The reason it is a such a good video is because they interview people who have dealt with the same thing we are dealing with (a physician who nearly died from it), kids, etc. It is an eye opener for people who don’t realize the significance of it. I will send you a link in a separate post. They push for testing in the video which I appreciate EXCEPT, testing has its limitations and so does the treatments they talk about.
 

Idie

Senior Member
Messages
134
Also forgot to mention... Very dry skin and brittle nails .. And that's been getting worse for a couple of years... Also listed as B12 deficiency symptoms on many sources.
Got that too. I was hoping that the big doses of folate and B12 would help that……so far it hasn’t but I’m hopeful.
 

Idie

Senior Member
Messages
134
Hi Tina

So interesting. I too had very heavy periods and was also tested for cancer, etc. So many of B12/folate symptoms are explained away—-aging, menopause, anxiety, etc. Thinking back, my legs used to ache so bad at night that I lived on pain relievers. I asked several physicians about that—-answer ”oh, well you are just getting older”.I was 40. The pain stopped entirely when I got my B12 levels up. I also had very bad hip pain——once again, shots in the hip but they can’t find anything, etc. Stopped when I got my B12 levels up. I had both of those problems for nearly 10 years before the big crash of B12 deficiency. I think people just can’t believe it has that many symptons. There are always naysayers who I tend to ignore because as my husband always tells people who just can’t grasp it….”look, her deterioration was a naked eye event AND her recovery was too! I had a ringside seat” I think as you get well and things fade you will be surprised how many of them are tied to the deficiency. It is always important to remember that B12 doesn’t act alone and will need a rounded out approach. :)

Not sure if you have watched the YouTube Video called “Diagnosing and Treating a B12 Deficiency”. It has researchers from Cleveland Clinic and a few others of the “bigs”. It is 58 minutes long. The reason it is a such a good video is because they interview people who have dealt with the same thing we are dealing with (a physician who nearly died from it), kids, etc. It is an eye opener for people who don’t realize the significance of it. I will send you a link in a separate post. They push for testing in the video which I appreciate EXCEPT, testing has its limitations and so does the treatments they talk Diagnosing
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Got that too. I was hoping that the big doses of folate and B12 would help that……so far it hasn’t but I’m hopeful.
Low copper among other things can cause the nail problems. Low cell making makes for easily torn nails. Each of several things has specific symptoms and characteristics that show up on the nails.
 
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