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Pernicious Anemia and Hydroxy B12-Help Please

melamine

Senior Member
Messages
341
Location
Upstate NY
That is exactly what I was wondering. You read about niacin being taken during methylation. I've not read about it being taking with hydroxy or even dibencozide.

It should produce the same result as long as methylation is taking place, but where you are not supposedly excessively methylating yet, because you are not taking the activator for it, which is folate, my expectation is that niacin would not help with your current symptoms, but taking a multi-b that includes niacin would be a good all-around balancing addition.
There is another New Posts thread that you might want to look at "Started taking B6 and feeling funny"
 

gracee41

Senior Member
Messages
115
I've taken B6 as P5P since my mutation calls for that. It gave me a headache. I will look at that post as well. Thank you.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
HyCbl could be the cause of your problems. In a person without enough MeCbl, l-methylfolate, L-carnitine and AdoCbl the HyCbl is deadlocked as an inactive cobalamin. It takes an enzyme and ATP to convert HyCbl to the active MeCbl and AdoCbl, Then HyCbl increase methyltrap and increases deficiency symptoms. Even if the body's system is working HyCbl relieves to some extent about 30 symptoms out of 300 or so active b12 deficiency symptoms.

There could be other causes as well. Tachycardia is a symptom of MeCbl and/or AdoCbl deficiency or Carnitine or methylfolate deficiency could be deadlocking the b12s.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
You would need some amount of methyl b12, as well as upping your magnesium. If magnesium is too deficient you will not hold onto much potassium no matter how much you consume. If you have clinical b12 deficiency then you should definitely be getting shots.
 

gracee41

Senior Member
Messages
115
I planned on adding the AdoCbl (Dibencozide) soon. Already have it. I was trying to adjust to the hydroxy first. It sounds like I need to go ahead and add the AdoCbl. Is this correct? I was going to add Methylfolate next. I was moving slowly since I had such a reaction to the methyl b cream complex. I will go ahead and up my magnesium oil as well. About the shots for B12 deficiency, aren't the shots cyanocobalamin?
 

Gondwanaland

Senior Member
Messages
5,094
No. Potassium will not throw off any mineral that I am aware of. Methylation might deplete iron, and other minerals can.
Potassium increases the need for magnesium
@gracee41 B2 uses up iron, how much B2 are you taking?
Don't you tolerate magnesium orally? I think you need more magnesium, to be taken hours apart from iron.
What are your SULT SNPs?
 

gracee41

Senior Member
Messages
115
I have stopped the B1 and B2 since yesterday. I don't tolerate magnesium orally. I've tried several different kinds to no avail. I've only been able to use the oil which is wonderful but inconvenient for sure I am taking Vitamin C 5000mg daily and 500mg of calcium as well. I will have to post my SNP's in bit. I'm not able to access them at the moment. Had not a clue magnesium and calcium were iron antagonists.
 

Gondwanaland

Senior Member
Messages
5,094
"electrolytes" as opposed to "minerals"
Magnesium and potassium are both minerals and electrolytes ;)
Do you think all that calcium gracee41 is taking is exacerbating a Mg deficiency?
AFAIK every calcium supplementation should be accompanied at least by magnesium, vit D and vit K2 - taking a look at bone formulas might help re proportions. I personally do not take calcium b/c I was on blood thinners once and might have calcium in undesired places. I have been taking low dose D+K2, and magnesium changed my life - no more insomnia, frequent high volume urination, cramps or food intolerances.

Magnesium can be especially useful for high heart rate and high blood pressure, but I my BP has always been on the low side and still magnesium was wonderful.
I don't tolerate magnesium orally. I've tried several different kinds to no avail.
What type of reactions do you have?
I have struggled for several months trying different magnesium forms until I tried magnesium oxide which was miraculous. I had been on some abx rounds that made my Mg deficiency much worse.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I planned on adding the AdoCbl (Dibencozide) soon. Already have it. I was trying to adjust to the hydroxy first. It sounds like I need to go ahead and add the AdoCbl. Is this correct? I was going to add Methylfolate next. I was moving slowly since I had such a reaction to the methyl b cream complex. I will go ahead and up my magnesium oil as well. About the shots for B12 deficiency, aren't the shots cyanocobalamin?

Hi Grace,

HyCbl and AdoCbl. if they together dilute the MeCbl in the system below about 20%, if you react like me, puts me into methyltrap and could cause neurological damage when methylfolate suddenly ups the need for MeCbl. I would suggest the MeCbl FIRST, then AdoCbl and then Methylfolate. I've learned these things the hard way. ORDER DOES MATTER.
 

melamine

Senior Member
Messages
341
Location
Upstate NY
I have struggled for several months trying different magnesium forms until I tried magnesium oxide which was miraculous. I had been on some abx rounds that made my Mg deficiency much worse.

@Gondwanaland - I want to try Mg oxide myself. I've been using Mg glycinate at night and mixed chelated Mgs during the day, but not nearly enough from what you say. I had shied away from the oxide kind because I had always read that it doesn't absorb well, but I could use the other quality of it in the bowel and you are obviously having good results from it for systemic issues. I have been on short courses and single or double doses of abx for surgeries frequently in the past couple years, so it sounds like that is another reason why I should be taking (much) more. Good to hear you've had such good results.

I have high volume urine too - polyuria (of unknown cause), but I have a very stretchy high capacity bladder, so frequency is not an issue!
 

gracee41

Senior Member
Messages
115
Thanks Fredd. That is very helpful information. I will reconsider my order of supplementation.

Gondwanaland, magnesium gives me stomach cramps. Even the smallest amount upsets my stomach. Also, my SNP's are as follows:
+/+ MAO-A-R297R, CBS 699T
+/-COMT V158M, COMT H62H, VDR Bsm, VDR Taq, ACAT1-02, MTR A2756G, MTRR A66G, MTRR K350A, BHMT-02, BHMT-08
+/- MTHFR C677T, MTHFR 03 P39P, MTHFR A1298C
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I would like to say something about "pernicious anemia". With a strict definition it is a failure of normal absorption of B12 for via lack of intrinsic factor for any of several reasons. Some people use it to speak of the actual macrocytic anemia which may be due to folate deficiency and/or MeCbl deficiency. I had increased MCV for decades. No amount of MeCbl and AdoCbl changed it. Only Metafolin decreased it. For me with ample b12s my MCV reflects what percentage of the time I spend in paradoxical folate deficiency.

During the correction of anemia, hypokalemia was common enough to be recognized even with CyCbl sometimes. Potassium may likely be needed if one succeed's in turning on the cell reproduction.
 

gracee41

Senior Member
Messages
115
Fredd, I read your post about the danger of low potassium. Fortunately, I had just had a complete CBC done. My MCV was normal at 87.1 (81.0-99.0).
 

whodathunkit

Senior Member
Messages
1,160
I have chronic anemia. Been dealing with it for some years.

Take your iron with vitamin C on an empty stomach by itself (with nothing else). "Ironsorb" by Jarrow is a good, non-constipating, economical brand of non-heme (not from animal source) iron that doesn't upset your stomach. Sometimes taking iron on an empty stomach can lead to stomach upset, so be careful what brand you choose.

"Empty stomach" means one hour before or two hours after a meal. I generally take mine first thing in the morning. But DO NOT drink coffee or use milk products or eat anything with a lot of fiber for at least an hour after you take it. All of those things will severely impede absorption. As will taking other minerals with iron or too close to your iron dose.

I also take methyl B12. I get a script for injectable (I inject myself) from my hematologist. It's part of my methylation protocol as well as treatment for anemia. I've had a lot of ups and downs with methylation, but it's been one of the best things I've ever done.

You do need B12 for iron absorption. I take my iron, vitamin C, and B12 shot all at the same time every day. If I do a double dose of iron in one day I'll do it with vitamin C but don't need more than one B12 shot in one day.

I also take adenosylcobalamin because of methylation but also because of anemia. I think both are needed to absorb iron properly.

Also take extra antioxidants, because iron is a source of free radicals. It's not to be feared unless you go into iron overload, but just to be on the safe side, take plenty of vitamin C when you take the iron, and then other antioxidants later.

The racing heartbeat: as melamine noted and others noted, the hydroxycobalamin may have kickstarted the methylation process for you. I second the recommendation about adding some daily potassium supplement to your diet. I like to put powder in juice .

Word of caution: if you keep on with the B12's, and add adenosylB12, you may run into problems of needing folate and other supplements. It's a great thing when your metabolism ramps up but can make you feel worse before you figure out what you need to feel better. Just be aware of this if you continue taking B12, especially if you add the add the adenosyl. Not a warning against doing it, just something to be aware of as you learn more and experiment with other things.

Good luck!

P.S. Not busting your chops :), but pernicious anemia is a diagnosable disease, not just regular old chronic anemia. PA is not just from eating a low iron diet, or from other identifiable causes (blood loss, etc.). Pernicious anemia stems from autoimmune causes which damage the ability of your GI tract to absorb B12. Unless you've been formally diagnosed you can't know if you have it. Probably better to say you have chronic anemia unless/until you receive a diagnosis of PA.

P.P.S. I posted this without realizing it was a 2-page thread. So some of what I said here may have been said by others. Apologies for any redundancies. I don't really have time to go back and read and edit appropriately.
 

gracee41

Senior Member
Messages
115
I have chronic anemia. Been dealing with it for some years.

Take your iron with vitamin C on an empty stomach by itself (with nothing else). "Ironsorb" by Jarrow is a good, non-constipating, economical brand of non-heme (not from animal source) iron that doesn't upset your stomach. Sometimes taking iron on an empty stomach can lead to stomach upset, so be careful what brand you choose.

"Empty stomach" means one hour before or two hours after a meal. I generally take mine first thing in the morning. But DO NOT drink coffee or use milk products or eat anything with a lot of fiber for at least an hour after you take it. All of those things will severely impede absorption. As will taking other minerals with iron or too close to your iron dose.

I also take methyl B12. I get a script for injectable (I inject myself) from my hematologist. It's part of my methylation protocol as well as treatment for anemia. I've had a lot of ups and downs with methylation, but it's been one of the best things I've ever done.

You do need B12 for iron absorption. I take my iron, vitamin C, and B12 shot all at the same time every day. If I do a double dose of iron in one day I'll do it with vitamin C but don't need more than one B12 shot in one day.

I also take adenosylcobalamin because of methylation but also because of anemia. I think both are needed to absorb iron properly.

Also take extra antioxidants, because iron is a source of free radicals. It's not to be feared unless you go into iron overload, but just to be on the safe side, take plenty of vitamin C when you take the iron, and then other antioxidants later.

The racing heartbeat: as melamine noted and others noted, the hydroxycobalamin may have kickstarted the methylation process for you. I second the recommendation about adding some daily potassium supplement to your diet. I like to put powder in juice .

Word of caution: if you keep on with the B12's, and add adenosylB12, you may run into problems of needing folate and other supplements. It's a great thing when your metabolism ramps up but can make you feel worse before you figure out what you need to feel better. Just be aware of this if you continue taking B12, especially if you add the add the adenosyl. Not a warning against doing it, just something to be aware of as you learn more and experiment with other things.

Good luck!

P.S. Not busting your chops :), but pernicious anemia is a diagnosable disease, not just regular old chronic anemia. PA is not just from eating a low iron diet, or from other identifiable causes (blood loss, etc.). Pernicious anemia stems from autoimmune causes which damage the ability of your GI tract to absorb B12. Unless you've been formally diagnosed you can't know if you have it. Probably better to say you have chronic anemia unless/until you receive a diagnosis of PA.

P.P.S. I posted this without realizing it was a 2-page thread. So some of what I said here may have been said by others. Apologies for any redundancies. I don't really have time to go back and read and edit appropriately.

Thank you for helping me with this. I know this has been mentioned before, but what is the ratio of hydoxy/adeno/methylfolate? I'm currently taking 1000mcg hydroxy and just started 8.6mg dibencozide. How much methylfolate is proportionate?
 

Gondwanaland

Senior Member
Messages
5,094
Gondwanaland, magnesium gives me stomach cramps. Even the smallest amount upsets my stomach. Also, my SNP's are as follows:
+/+ MAO-A-R297R, CBS 699T
+/-COMT V158M, COMT H62H, VDR Bsm, VDR Taq, ACAT1-02, MTR A2756G, MTRR A66G, MTRR K350A, BHMT-02, BHMT-08
+/- MTHFR C677T, MTHFR 03 P39P, MTHFR A1298C
Yes, I understand a lot of people have gut troubles from taking oral magnesium. At first I thought I had problems with magnesium too (not gut related though), until I found out that my problems were related to some magnesium forms giving me ammonia issues (glycinate, citrate, aspartate, sulfate).

I assume you have gone through the SNPs Interpretation guide linked in caledonia's signature and the Heartfixer site.
I am looking for people with SULT issues to try to find a pattern involving salicylate intolerance (high ammonia and uric acid) and magnesium deficiency.

Ahmo also has a useful guide linked in her signature to Freddd's protocol.
 

whodathunkit

Senior Member
Messages
1,160
@gracee41: I honestly don't know or worry about ratio. I dose myself according to how I feel, and tweak things accordingly. I wish I could be more help about that. There's been a lot of discussion around here about ratios and what not, but I'm not really sure where things have landed with that. I'm comfy tweaking things according to how I feel.

That said, I have been back and forth with my mB12 dosage. I injected 5mg//day (nope, not a typo, actually 5mg/day mB12) for a while, and then after some months I started feeling like I needed to back off so I backed off to about half that every day or two for a while. But just over Thanksgiving I forgot my mB12 for a few days in a row, and then accidentally drank a nearly a whole bottle of Bailey's Irish Cream while cooking Thanksgiving dinner. o_O Not only was I sadly, unfortunately hammered by the time we sat down to eat, but the alcohol apparently stole all my methyl groups and I ran out of mB12 to help my folate go, so I went into methyl trap. I developed angular cheilitis and badly chapped lips within hours (two big signs of methyl trap for me). It went away almost as quickly as it developed when I realized what was happening (next day after I sobered up :() and gave myself another nice fat shot of mB12. (@garyfritz, are you still reading around here? Take warning from my story! ;))

So now I'm back to daily injections (about 2mg/day) for a while, except one day per week when I do dibencozide. But if I start feeling the daily mB12 injections are a bit much again, I'll just cut back until I'm comfortable with how I feel. But you can bet I'm not going to forget them entirely ever again. LOL

Aaaanyway...that's just by way of explaining how I've been around the block with my B12 dosage and can monitor need for it by symptoms. If I was you I would consider heeding @Freddd's advice and trying some mB12 instead of hydroxy, just to see what happens. If one of your snps prevents you from processing even hydroxy, you won't be able to make the best use of it. mB12 might help you make use of your B12 more efficiently. It's worth trying to see, at any rate. Some people can't do mB12 or have a hard time with it at first, but you won't know what it does for you until you try. I wish I could tell you what snp it is that doesn't work with hydroxy but I can't. Hopefully someone more knowledgeable will chime in.

I'm also taking about 30-50mg of dibencozide per week. As per current Freddd recommendations, I take the dibencozide on a day that I don't do any mB12, just to make sure the absorption of one doesn't interfere with the other. For whatever that's worth to you.

Also take 8mg/day Solgar metafolin. And 1000 mg/day l-carnitine fumarate. The whole "Deadlock Quartet". Plus a whole boatload of other non-Deadlock things.

Not sure all that is helpful, but maybe it is a little bit.
 

garyfritz

Senior Member
Messages
599
Yes I'm still here. But I don't plan to kill off an entire bottle of Bailey's so I think I'm fairly safe. :rofl:
 

gracee41

Senior Member
Messages
115
@gracee41: I honestly don't know or worry about ratio. I dose myself according to how I feel, and tweak things accordingly. I wish I could be more help about that. There's been a lot of discussion around here about ratios and what not, but I'm not really sure where things have landed with that. I'm comfy tweaking things according to how I feel.

That said, I have been back and forth with my mB12 dosage. I injected 5mg//day (nope, not a typo, actually 5mg/day mB12) for a while, and then after some months I started feeling like I needed to back off so I backed off to about half that every day or two for a while. But just over Thanksgiving I forgot my mB12 for a few days in a row, and then accidentally drank a nearly a whole bottle of Bailey's Irish Cream while cooking Thanksgiving dinner. o_O Not only was I sadly, unfortunately hammered by the time we sat down to eat, but the alcohol apparently stole all my methyl groups and I ran out of mB12 to help my folate go, so I went into methyl trap. I developed angular cheilitis and badly chapped lips within hours (two big signs of methyl trap for me). It went away almost as quickly as it developed when I realized what was happening (next day after I sobered up :() and gave myself another nice fat shot of mB12. (@garyfritz, are you still reading around here? Take warning from my story! ;))

So now I'm back to daily injections (about 2mg/day) for a while, except one day per week when I do dibencozide. But if I start feeling the daily mB12 injections are a bit much again, I'll just cut back until I'm comfortable with how I feel. But you can bet I'm not going to forget them entirely ever again. LOL

Aaaanyway...that's just by way of explaining how I've been around the block with my B12 dosage and can monitor need for it by symptoms. If I was you I would consider heeding @Freddd's advice and trying some mB12 instead of hydroxy, just to see what happens. If one of your snps prevents you from processing even hydroxy, you won't be able to make the best use of it. mB12 might help you make use of your B12 more efficiently. It's worth trying to see, at any rate. Some people can't do mB12 or have a hard time with it at first, but you won't know what it does for you until you try. I wish I could tell you what snp it is that doesn't work with hydroxy but I can't. Hopefully someone more knowledgeable will chime in.

I'm also taking about 30-50mg of dibencozide per week. As per current Freddd recommendations, I take the dibencozide on a day that I don't do any mB12, just to make sure the absorption of one doesn't interfere with the other. For whatever that's worth to you.

Also take 8mg/day Solgar metafolin. And 1000 mg/day l-carnitine fumarate. The whole "Deadlock Quartet". Plus a whole boatload of other non-Deadlock things.

Not sure all that is helpful, but maybe it is a little bit.

I have tried a methyl b complex prescribed by my doctor. I did not do well on it. I had anxiety, heart palps, shortness of breath, and insomnia on it. That started about 3 days after I first used it. I cut back to a very small dose. Palps and anxiety stopped. Shortness of breath and insomnia remained. I used it for a month. I generally felt bad on it.

After I stopped using it, I felt much better but shortness of breath continued. I thought it was strange but read that methylation had most likely started up. It could have been potassium but heart palps were non-existent. Only shortness of breath and insomnia remained. I read Dr. Yasko's chart of suggested B12 depending on your gene mutation. For my mutation, that would be hydroxy with a small amount of adeno. I understood that was to be taken everyday.

I read a detailed post here about appropriate ratios to avoid methyl trapping. I will have to find it again.