Pernicious Anemia? B12 shots/B supps/adrenal and hypoglycemia issues too - Mothering Forums

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#1 of 6 Old 05-18-2009, 01:17 AM - Thread Starter
 
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Please someone let me know if this is a duplicate, but I am hoping to start a discussion on supplementing with B vitamins. My situation is pretty specific but I hope others will use this to talk about more general considerations as well.

My story:
ND thinks I have pernicious anemia or some sort of inability to absorb B12. Was getting injections weekly and it just wasn't enough, can't hold it in my system. I am extremely hypoglycemic and so is DD, who is still nursing at 19 months. She was also on Nexium for way too long, which inhibits B12 absorption due to low stomach acid. She is extremely B12 deficient. I have put this all together in the last few days. Our symptoms seem to be much better when we eat dark leafy greens so for that reason and also food allergies we've been on ED of wild rice, meat, and dark leafies for a few months (before then CFGF, no sugar, limited fructose). I read however, that folate can mask the symptoms of B12 deficiency. We have dramatically cut back on dark leafies in the last few days and B12 deficiency symptoms have gotten much more pronounced. The more B12 we get, the more sensitive we are to it leaving our systems. Deficiency makes us very thirsty, pee a lot, and have dark very smelly pee. Getting too much (esp in the form of cyanocobalamin, since it is harder for body to process) makes us irritable (DD gets slappy).

Thoughts/Questions
I know B6 and B12 work together to regulate blood sugar. From my bottle, it looks like twice as much B12 as B6 is the right ratio. I read your body can't absorb much B6 at one time, so megadosing isn't helpful. How frequently should you take the B6 though? My metabolism is super fast right now, probably 6 hrs to get water sol. vits. out instead of the normal 12.

I have a B complex that I take but wonder if I shouldn't use this since between the complex and my injection I'm getting even more B12. Also concerned about the folate/folic acid. I read in doses over 1000 mcg per day it can mask symptoms of B12 deficiency. I didn't talk to my ND about the B complex yet, but I feel kind of sick (nauseus) without it.

I am taking supps with meals. DD gets a multi with Bs in the AM with breakfast. I take multis with B complex at breakfast, lunch, and dinner. The only one I leave for bedtime is the Cal/Mag/D3. But I still have some calcium in the multi that I take with the B complex, I read that some calcium can enhance B12 absorption.

I also read that acidity in the stomach helps with B12 absorption, which is why some people become deficient as they age. We were drinking chamomile and ginger tea before meals to bump up stomach acid a bit. I don't know if that helped. Now it's hot so I haven't been doing that as much.

I know the Bs are water soluable so theoretically shouldn't be able to hurt yourself, but read something on wikipedia that said in suseptible individuals you can give yourself hypokalemia (low potassium) by treating pernicious/megaloblastic anemia with B12. I'm concerned about this esp for DD, since it's possible she may have the same anemia in addition to her deficit from the Nexium. I am taking an electrolyte solution though. She really needs me to be taking an injection twice a day, but I'm only comfortable with doing every other day at this point because I don't really know what I'm doing and can't talk to ND until mid-week. Meanwhile, we aren't sleeping.

DD needs her own B12 source. Any good sugar/allergen free methylcobalamin ones? Any guides to appropriate theraputic doses?
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#2 of 6 Old 05-18-2009, 01:44 AM
 
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I'm really wondering what the symptoms are? Because I had all the symptoms of b12 deficiency and it was something else altogether. And my son shared some of what you mention about your daughter so I'm just hoping you're on the right track with the b vitamins but I'm unclear as it doesn't sound like you've done much testing yet.

How do you know she's b12 deficient? It takes quite a while for a person to become b12 deficient due to acid reducers and even longer for a child because completely inhibiting acid in a child takes really high and frequent (3 x's a day) doses compared to adults. To be deficient from Nexium at 19 months would completely shock me. My kiddo was on those very high and frequent doses until age 3.5 and still wasn't b12 deficient. However, iron deficiency is more of a concern. That's an easy one to check for (ferritin levels). You can also go ahead and have your folate levels checked in the RBC so you know whether that is a concern. I always supplement folic acid at upper tolerable intake levels along with the b12.

You just sound very stressed to me and overwhelmed really. I've been there so maybe I'm reading too much into your post. But it seems like having actual information would be much better (and less stressful).

Or Integrative Med. doctor tends to just liberally supplement b12. He actually uses a lot of hydroxy as not everyone tolerates the methyl donors well.

Here is a methyl-b12 spray http://www.holisticheal.com/suppleme...n-1-fl-oz.html it's allergen and sugar free. She can take injections too and bypass the stomach acid concerns though I'm not at all convinced she would need them. You can get her tested for pernicious anemia.

But for b vitamins my kids do a general broad spectrum b supplement in the morning, b12 (1000 mcg.) at lunch, low dose b6 and their extra folic acid (folapro is a really well absorbed form by the way compared to other forms) before bed. I do the same except I tend to do more b12 to try to support nerves/help repair the nerve damage I have from another condition and a deficiency (or two in my case). But the doctors were convinced I had a b12 deficiency, then MS, then adrenal fatigue, and it turns out none of those were my issue. I just mention because it's possible you also need to be looking in another direction in addition to supporting your bodies need for b12.

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#3 of 6 Old 05-18-2009, 02:26 AM
 
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Before I was diagnosed with MS I thought I might have a B12 deficiency. I went here: http://www.b12.com/ and sent for a test. My levels were normal.

BTW, this was an easy at-home test (urine sample.) The doctor (Eric J. Norman, Ph.D. in collaboration with the late M. Drue Denton, M.D. and co-workers at the Hematology Division of the University of Cincinnati College of Medicine, USA) was very approachable, answered my questions via email, etc. Great experience.

Me (37) ~ DH (39) ~ DS (3) ~ TTC #2 since 4/10
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#4 of 6 Old 05-18-2009, 04:13 PM - Thread Starter
 
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Thank you so much for your help with this. Here is some more info. I am sure this is way too much, info, LOL, but this will give a complete history. We have adrenal and SI issues as well. Lots of stressors in my lifetime and I agree it is totally possible that it’s simply accumulated stress, not pernicious anemia. I am retitling this post because it is so specific to my situation.

Me – Prior to Pregnancy
•Deal very poorly with stress. Perfectionistic, ambitious, trouble with follow-through, easily overwhelmed.
•Feel like there is a happy, very bright & shiny, capable person trapped inside me. Depression from earliest age I can remember.
•Father emotionally abusive to mom, then divorced when I was six. At around the same time I was abused by a neighbor in daycare situation for about a year.
•Little family support, not close.
•Feeling more and more weak and tired as I got older.
•Difficulty motivating, withdrawl/resist doing things to make myself feel better. Although I can also be very social, active, funny, tend to be well liked and respected, part of the group, etc.
•Frequent sores in mouth.
•Dry skin, deep painful cracks in heels.
•Post traumatic stress type symptoms such as extreme sensitivity to action/violent movies.
•Began seeing therapist in college and on/off for 17 yrs. She is awesome and I felt like we thoroughly addressed my issues, but why am I still so depressed/so lackluster? On and off antidepressants. Sometimes seemed to help, sometimes not.
•Insomnia. Tired at 9 but resist sleep, fall asleep at 11, sleep late. Always tired during the day.
•Sometimes chills or sweating in difficult emotional situations. Worst in adolescence, college, and now. Sometimes extremely uncomfortable in social situations, though when I am feeling well I really enjoy being around people.
•Prone to binging. Big eater and eat all the time. Put on about 20 extra pds I could not lose, except when in stressful jobs and then I became thin again.
•Hypoglycemic, some fainting, weakness, need to eat all the time. Lactose intolerant in college but then got better.
•Chest pains, pains in arms and legs under stress.
•Recurring nerve issue in foot with stress (morton’s neuroma?)
•Mom is very thin, hypoglycemic, social anxiety. Dad has skin inflammation/deep cracking, depression, social withdrawl, tachycardia/palpitations, frequent sores in mouth, nerve damage in feet, everyone in his family (his mom, dad, brother) has died of heart attack.

Me – Pregnancy
•Went off antidepressants for pregnancy.
•Extreme weakness/fatigue throughout pregnancy. I literally had to slap myself and bite my tongue very hard to keep from driving off the road during my 1 hr commute. I am a generally fit person and by 6 months it was nearly impossible for me to exercise much at all. Near the end of the pregnancy I could not walk around the block without help.
•Marital stress. We each sought counseling and felt better but lots of huge ups and downs, lots of drama.
•Insomnia. Could not fall asleep until 12-1, then would wake from 3-5ish, then maybe sleep from 5-6.
•Hypoglycemia. Had to eat every 2 hrs throughout entire pregnancy. Needed protein with every meal, esp breakfast.
•Extreme thirst. Cottonmouth, needed to drink a full tall glass of water every few hours and peed every hour.
•Negative GTT, but felt like I was going to pass out after drinking the stuff. I was sure I was going to be positive.
•Extreme anxiety, especially social anxiety. Lots of worrying.
•Stubborn atheletes foot in left foot in spot that ND later told me was kidney spot (if you believe in that sort of thing). Later had same thing in “liver spot.”
•After much struggle with the decision decided to get back on antidepressants at about 37 weeks. DD born 11 days overdue. Kind of blue, didn’t cry, needed 02. 8 lb 13 oz.

Me – After DD’s birth
•Extreme fatigue. Only a couple of times have slept more than 3 hrs at a time in 19 months.
•PPD symptoms. Episodes of hysterical outbursts, screaming, pounding the floor, feeling unglued. Rages triggered by binging on carbs/sugar.
•Severe headaches. CT scan – normal.
•Extreme thirst/some nausea/vomting.
•Bowel symptoms. Alternating constipation/diarrhea.
•Extreme irritability. Very difficult to tolerate touch, breastfeeding.
•Dizziness/ataxia/running into furniture and walls.
•Heart palpitations, shortness of breath – got better when I switched from NatureMade multi to Thorne multi.
•Chest pains.
•Skin inflammation particularly in hands and feet, deep painful bleeding cracks in heels and fingertips/fingerjoints. Cracking in hands is completely gone with no dairy/gluten/sugar.
•Allergens. Elim gluten at 12 months (was having headaches, extreme thirst). Sometime in between I elim sugar and noticed PPD/hysterical feelings abated or gone completely. I stopped taking antidepressants a few months after she was born and while off sugar I don’t miss them at all.
•Tried to eliminate stressors. Did not return to work. Sleep when baby sleeps, let the house go, etc. Pretty much just care for DD 24/7.
•Prone to binging.
•Elim dairy at 1 month (no change for DD) and again at 2.5 months along with other Big 8
•Significant marital stress over what to do about DD.
•Heart palpitations returned, chest pains, numbness/tingling in hands and feet. Went away when I ate practically a half chicken and 3 bananas in one sitting, and then pretty much went away when I started B12 shots.

DD
•Severe reflux from birth. Allergic colitis. Got better with dairy elim and probiotics but her sleep/mood never really got better.
•Reflux atypical in that ND says it seems like high stomach acid, not low. Also atypical in that it started from birth (usually 2-3 wks after?)
•After birth slept all the time, had to wake to feed. Reflux like clockwork 20 min after feeding.
•Then became a horrible sleeper although we’ve done everything under the sun to help her sleep. Would never co-sleep. Difficulty falling asleep/fights sleep/frequent waking, only one nap even when she needs more.
•Zantac at 7 weeks until 6 months. Responded well to Zantac at first but then got worse.
•Started Nexium 6 months. For two weeks after, she did GREAT. Slept like a dream. Then gradually started to develop respiratory symptoms (stridor) and sweating in sleep, some sleep apnea. Weaned from Nexium at about 15 months.
•Always a high level of anxiety, but never wanted to be touched.
•Transitions/break in routine very difficult/meltdown.
•Noticed that when she feels good – not irritable, no hitting, plays independently, eats calmly, doesn’t need to be held 24/7, doesn’t need to eat as often, good mood, says “happy baby,” not as bothered by teething, can trip and fall and get up without much fuss, can clip nails/change clothes much easier, little or no drama around food/eating.
•When she doesn’t feel good – irritable, very anxious, hits/slaps/bites, must be constantly entertained or worn/held, super difficult transitions, severe separation anxiety/panic, teething horrible, ataxia, melts down with any minor accident/bump, becomes obsessive/anxious about clothing (hat on/off, socks on/off etc), lots of anxiety around food, wants to eat all the time, everytime anyone around her has food there is drama.
•Sometimes this will switch back and forth in a matter of days, so more going on than just developmental stage, although anxiety definitely MUCH more pronounced at 9 months and 18 months.

B Vitamin Experimentation
•When I started weekly injections we saw big improvement in our sleep/mood. Sleep mood would go up and down as the B came and went out of our system. Seemed that the shots were lasting fewer and fewer days, to the point where I felt like they only lasted a day. The mood swings in DD and me were very pronounced.
•When we are low, extreme thirst, peeing a lot, dark smelly pee. Heart palps and numbness return in me. At the same time, DD gets more anxious/clingy/wants to eat only meat (esp chicken). She easily would eat ½ cup of chopped chicken meat 5 times a day. When we are not low in B12, she wants either avocado or rice (lots and lots) but then again, she doesn’t have that many choices. We don’t usually eat beef, but one day we ate a lot of fatty steak and she REALLY liked it.
•DD’s poops were green and loose. Since frequent B12, have become consistently well formed but dark, almost black (iron, I’m thinking).
•Morton’s neuroma gone after starting B12 (Could ski again!!!! Woohoo!!!) But feeling some flare-ups with the experimentation.
•After shots have felt GREAT. For the first time in years. Have energy.
•Must take methylcobalamin. Cyanocobalamin makes me sad and/or fly into rage.
•Now that I am doing my own injections, more frequently, noticing heart palps and pain in feet when it leaves my system. Last night pain/deep ache in toes, 12 hrs after last shot. This was after 2 days of cutting back on leafy greens.
•DD is letting me take her into bed and sleep with me (before would just wake up and cry). Slept til 7 am!!!! Usually wakes at 5 am. This same morning noticed our pee was lighter and we were both in a great mood.
•DD is letting me touch her now. Asks for massages. SI symptoms come and go with B12 (also with fructose and SI symptoms got much better after getting off Nexium).
•Eating leafy greens makes things feel better. I wonder if folate was masking symptoms since when eating lots of greens, hypoglycemia is better and heart palps/numbness go away.
•Feeling like I can’t get the timing right, either too much or too little time in between shots. DD gets low before I do.
•The one time I did it, seemed to work really well to do shot at night (it was midnight). That night felt my background fatigue unleashed… felt super tired, I think at a level that is appropriate to how little sleep I get. Usually I feel “up” no trouble no matter how little sleep I get. DD slept very well and seemed very well rested, and lasted longer until her nap (got tired at 11 but napped at 1. Usually gets tired at 8-9 and may nap then or at 11).
•Played with smaller dose. Took half a shot. Made me feel better, just OK, not great, and didn’t do anything for DD at all. Afraid to do another shot soon after, so DD got pretty low in the meantime and pee is darker than I have ever seen it. It looks manilla envelope colored on the diaper (when I have her in a disposable).
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#5 of 6 Old 05-18-2009, 06:16 PM
 
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Gosh.

Your physical symptom mirror us an awful lot. We've got an underlying metabolic condition called mitochondrial disorder. There are other metabolic conditions that can also cause what you are describing. I wrote about some of them here. http://www.mothering.com/discussions...d.php?t=734501 When you look online about mitochondrial particularly you get all the worst case scenarios but now they know there is a huge range of symptoms (or lack of) even in people with the exact same genetic mutations. It's really common for these things to get worse with any stress on the body and pregnancy is a huge stressor (as are many of the emotional things you mentioned). But I had very similar symptoms (including the neuromas). My son's initial presentation was severe reflux. My co-q-10 level was low. His was normal but his carnitine levels were low. I also found a low vitamin D level which can also wreck havoc and was likely responsible for some of my issues.

We ran a metametrix urine lab which caught my kid's mito issues (though we already knew at that point as we were working with a geneticist and had a biopsy). But the metametrix recommended all the same things he was already on for his issues (and had responded so well to). So if you can get that lab done it might be really helpful. It covers all kinds of issues and shows needs for specific supplements including the ones you are concerned about (and a bunch more). If you can I'd get it.

I also suggest you get a vitamin D (25 Hydroxy (OH) D to be specific..you need the right test.) This site has information about what test to get and also symptoms and importance of vitamin D. http://www.vitamindcouncil.org/healt...eficient.shtml I think it was responsible for some of my pain and fatigue. Vitamin D deficiency is very common and so I think everyone should have their levels checked. Look over that site.

And follow up on testing the b12 levels, folate, and your daughter's ferritin perhaps. You can also check thryoid and I probably would. There is so much that could be behind what you describe.

And it's possible (as in my case) that you've got a b12 issue along with something else. That's not at all uncommon. But I think you need some testing so you know exactly what thing (or things) you're dealing with.

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#6 of 6 Old 05-23-2009, 03:58 AM - Thread Starter
 
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thank you for the hugs! i am so grateful for the advice and support of people who've been "there" before me.

they are going to run the vit d test you mentioned, but i didn't see co-q-10 or carnitine (i know those just happen to be the ones affected for you, but i just didn't see much besides b12 that they were checking for in the blood test). i guess i should push for the folate and ferritin, they just already think i'm neurotic. i am curious about b6 too.

they are doing stool sample for malabsorption and bacteria. should i feed her something with fructose in it so they can see what that looks like? or keep on her diet?

they are doing a UA but it's not metametrix. but my ND mentioned this lab, maybe i will talk to her about it.

right now even my ND thinks i'm overreacting. she thinks all we need is sleep. which we DO(!!!!!!!) but we can only sleep with b12. so i am left very confused.

i should mention i've had a full lab done and only showed high in potassium, low in b12, and low in iron (slight). thyroid was off at time of DD's birth but now up in OK level.
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