Pernicious Anaemia Society
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low b12/folate- liquid

Hi guys... Brand new here. 23 female. After years of research and trying so many vitamins and seeing so many doctors I think I've finally narrowed down my lifelong symptoms to a possible B12/Folate deficiency. A few years ago my doctor told me I was "a little low" in B12 and D (despite the fact that I had thin/dry hair, brittle nails, depression, anxiety, fatigue, getting sick every month/constant chest infections, period stops early, mild asthma, cuts on fingers around nails, etc) Ever since then I started taking a multivitamin and a capsule B Complex- urine was always super yellow. This seemed to ward off the constant infection (I didn't get sick for a year and a half) although still had all of the other symptoms. Diet wise, I can be a picky eater. I'm not huge on meat and I can be a bit of a jerk about veggies too. I don't really eat junk or sweets, soda, etc. But taking the multivitamin and b complex (100 mcg) seemed to be enough to stay well (not get sick) consistently.

My most recent blood test that I have results for (Nov. 2016), my B12 was at 836 and my folate was considered high (can't remember #). So for a while I didn't know what to make of my symptoms. Anyways, a few weeks ago on a whim I decided to try a liquid iron supplement that had B12 (cyano) and folate in it. Brand is Integrative Therapeutics. This supplement literally changed my life. I felt an immediate burst of energy, in about 2-3 days my hair suddenly became soft and shiny and grew longer than it's been ever able to in years, and my nails were long and practically impenetrable. My dark circles started to look better, I was sleeping well. It felt like I had never had depression.. I just felt amazing! Also, my urine wasn't yellow either. Unfortunately, what I believe was the iron started giving me bad migraines even when I halved the dose, took with food and OJ, etc. So I decided to look for other sublinguals. I found another that actually didn't have folate-- I noticed that it gave me the energy boost but did nothing for my hair,nails, and skin. I ordered another and was trying this and that.

During this trial time (literally the past 2-3 weeks), for the first time in 1.5 years, I caught the flu which quickly somehow turned into bronchitis--remember I am very prone to sinus/chest infection. I thought it was weird how after 1.5 years of great immunity (not even a sniffle) the time when I was messing around with vitamins my body seemed to lull. I got really sick and as a last resort picked up a Solgar B Complex liquid. It has 2000 mcg of B12 (much more than all I've ever tried) but not as much folic acid as the miracle supplement I talked about earlier. I noticed that taking this supplement gave me energy but also made my persistent fever vanish--something that Advil will barely even do at this point. My nails are still atrocious and breaking. I've taken 3 doses of it so far today. I'm nervous that it's an excessive amount of B12? I literally get better when I take it and after a 5-6 hours pass, I start to feel like a truck hit me again, the fever spikes, my cough gets worse.

I have yet to be formally diagnosed with low b12 or folate, and I plan to go to a clinic near me that deals specifically with this problem and gives B12, D, choline, and inositol shots. But, I'm trying to process what all of this could mean. I'm wondering if that first liquid supplement I took was really nourishing my body and then when I stopped, my immune system took a hit? Should I just keep taking the B complex when I feel terrible until I'm healthy again? Anyways, if anyone has any insight or advice or similar experience... I would love to know. :)

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Hi Moni, sorry it took so long for a reply lol

Well done You for finding something that worked so well for you.

The original supplement that you then tried halving to reduce/eliminate the migraines.........

You do know iron supplements need to be taken when you haven't had any dairy or phytates (raw cereals) recently ( an hour or so) and so was wondering what foods you say you were taking the supplement with?

Also did you change anything else in your diet around that time, a different bread etc as some breads can give me the zig-zag, short lived visual migraine.

Were they 'short lived' migraines?

If it were me with my type of migraine I'd be thinking of going back on that supplement that worked ever so well for me, and writing a note of everything I ate and perhaps if the migraines start again you may be able to look at your notes and see a pattern of a foodstuff/time of day etc that may be causing the migraines rather than the supplement?

If you fail to see any pattern etc then maybe it is the supplement and then at least you'd know?

Their product listing says it does NOT contain any......

•artificial coloring

•artificial flavoring

•dairy products

•gluten

•ingredients of animal origin

•preservatives

•salt

•soy

•sugar

•wheat

•yeast

..in other words, most things that perhaps cause migraine and other reactions; that's why I'm wondering you added something else in your diet without realising it as you were suddenly feeling so good? A new beauty product or hair product, perfume or other cosmetic etc

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hi! thanks for the reply. I usually have avocado toast with eggs or oatmeal for breakfast. Pretty consistent...maybe its the oatmeal?? The migraine lasts hours. I get super tired and sometimes nauseous as well. I'm anxious because it literally ruins the day for me when the migraine sets in. I'm just confused as to why the first two weeks were totally clear though.. I'd even take it without food and would feel great!

My iron levels are fantastic as of 3 months ago so I figured maybe try to find another liquid without iron with similar levels of B12 and folate. Who knows. I do know that I get a very similar reaction to magnesium supplements. Terrible migraine with magnesium, caffeine alleviates it weirdly.

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Yeah high magnesium supplementation can cause headaches I know that for fact lol

I used to get so ill after migraine, and knackered and just wanted to sleep for a few hours.

Look it may be an idea to go back on that liquid one, every OTHER day, and see if it still boosts you but doesn't reach blood levels that lead to the migraines again maybe?

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yeah, prob a good idea. I'm going to try one more b complex liquid and if that's a bust like the others, I'll try this one again. what a ride!

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Others would tell you to have appropriate blood tests to try and see if you do have a PA-type deficiency but with the amount of supplementation you seem to have been taking they may also tell you it'd take about 3 months for levels to fall to a 'natural' state again for the bloods to be accurate, and I don't think you'd be prepared to do that, I know I wouldn't want to go back to feeling like that and risking nerve damage.

But.... it seems that if you have low B12 and high folate and that continues, it can cause damage, which I guess is why they say to have your bloods done first to get some sort of ballpark figures.

If I'm correct, taking only B12 alone, even if you have low folate, won't do as much harm, if any, because its the B12 that is used to form the sheath around the nerves whereas the folate is used along with B12 (and others) to form/maintain red blood cells,but I'm new to this so don't take that as gospel, perhaps ask on a new thread for clarification?

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Yes this is the dilemma! I may ask another question about it. My B12 is 836, which is considered pretty good and definitely normal by USA standards. My folate is also high, it's over 20. However all of my bloodwork has always been when I've been taking a multivitamin + b complex. I was considering ordering bloodwork on my own. I came across a B12/Folate test and the test said I had to A. fast for 12 hrs. and B. not take biotin for 72 hours. I thought that bit was interesting.. every blood test I've ever had done, I've been taking 300 mcg if not more of biotin everyday. But like you said, the idea of stopping vitamins for three days, let alone months!! is scary to me because if I don't take my multi for 2-3 days in a row I start getting very tired and sneezing/headaches. My immunity seems to depend on it.

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BUT... the big irony of B12 deficiency is that your blood tests may reflect high levels of B12, but may NOT reflect how much of that is actually going in to the cells. You can have 100 gallons of gasoline in your trunk, but your engine itself will still not get any to burn. I've been on proton pump inhibitors for 2 decades, and I just discovered they block intrinsic factor which is essential to separate the B12 from a protein before my body can drive it into cells needing it. My blood results will undoubtedly say I am awash with high levels of B12 in my blood but it won't show what levels are in my tissue and so the GP will tell me I can't haveB12 deficiency despite all the classic symptoms I have explained to him he'll ignore them and I'll likely be left to self-treat.

So your level of 836 may not be an accurate indicator of B12 deficiency in the cells, which may be well below acceptable levels.

I don't know if folate blood results are as hit and miss as the B12, but if they are, it is possible you have high folate and low B12 like I said previously, which is a tricky situation, which is why it is said to treat B12-only levels first, then folate, to prevent the start of/furtherance of spinal neurone damage.

I'd post up a new thread, seek total clarification on that exact matter, before going any further, for the sake of your health and long term wellbeing ! ! :o)

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Yes this is exactly what I was thinking. When I told my GP that the b-complex sublingual liquid was making my fever go away, she said "well that's probably not true but keep taking it if you'd like". I've googled this a lot and I have read that some recommend an active-b12 blood test to see what is actually being used. Something tells me that my current GP wouldn't order it for me. Thanks so much for all of your correspondence!!

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