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Pernicious Anaemia Society
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How long before improvement

I have been self injecting daily cyanocobalamin with oral folic acid, B complex, and magnesium, for a month now, and the main symptom I had that I struggle with is anxiety. I also have tingling in my feet, tinnitus etc.

If anything, the tingling has gotten stronger. My sense of dread seems lighter, but I still have anxiety every day, and intrusive thoughts which makes me wonder if I am going crazy.

With a month of daily injections shouldnt I feel better than I do? My levels were JUST at deficient when I was diagnosed, not overly low.

I just switched to my second bottle and I did wonder if my first bottle had sat out on my porch in the 93 degree sun for too long when it was delivered. I am hoping I see even more improvement with this new bottle.

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Hi aharlov In what country do you live?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Also I am concerned when you say the B12 has been "sat out on my porch in the 93 degree sun" as that may well have affected its effectiveness B12 injections should be stored at a stable temperature of between 59 and 86 degrees Fahrenheit.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

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Thanks! When it was delivered it was VERY hot so I called the company and they said if it was only an hour or so it should be fine. That was my old bottle of B12... So now I am on a new bottle that I took right from the air conditioned cab of my postman, into my basement (coolest place in the house!) So hopefully the new ones are okay.

I am in the States..

Can anxiety get worse before it gets better too?

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Oh yes

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Hi, my Hem Dr advised me blood responds quickly but it takes 4-6 mos to get into tissues enough to make a difference. My symptoms got worse for 8-12 wks before they finally abated a little. It was 4 months before I felt hunger. It is not normal but I do feel it. I had very loud pulsatile tinnutis. Some days I no longer hear it and on the ones I do it is much less intrusive. For me, the tinnitus was one of the first symptoms to go away or lessen.

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That is very encouraging to know that I can still be on the right track. Thank you!

I also have heart palpitations that I haven't had in 7 years since my heart surgery. I am trying to get as much potassium as possible but wondering if I should get my heart checked out or if this is part of the healing...

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Is you anxiety newly diagnosed and are you on meds? Anxiety was my first symptom and I tried Zoloft. It multiplied my anxiety 100 fold. I thought I was going crazy. I took me weeks to figure out the anti- depressant was making it worse.

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Your anxiety should lessen. I know it seems like a vicious cycle with worrying about the symptoms and if you are going to improve. I was there. I have very little anxiety now and hopefully you will experience the same.

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I've had anxiety for years on and off but since November 2017 it's been terrible, I almost quit my job because of it. I refused SSRIs because of all the side effects I read about and I was convinced there was another cause. It took 7 doctors before someone finally tested my B12 and D, and my D levels were basically undetectable, and B12 was low. Methylcobalamin gives me even WORSE anxiety, hence why I am using cyanocobalamin right now.

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Hang in there. It took at least 3 months of B12 before mine stopped. Even 3-4 weeks into replacement I would at times find it difficult to sleep and felt that all too familiar "fight or flight" feeling.

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I am also following D deficiency protocol

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Hello. I am in US as well and struggling with crippling anxiety muscle pain/weakness and Palpitations. Can you advise how are your buying in Cyano . My doctor wont give me more than 1shot/month. I was diagnosed at levels less than 100.

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Dvpk24, I order my B12 from b12-shot.com

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I order my supplies from Allegro Medical

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hi there, since you are taking vitamin D and your anxiety is increasing, it could be due to a magnesium deficiency. magnesium is a cofactor for vitamin D. Magnesium is called the calming nutrient. i see that you are already taking some but if you need more, you need more.

I tested this by taking a dead sea salt bath (main ingredient is magnesium and a much higher content of magnesium than epsom salts). 3 cups in a bath for a minimum of 40 minutes. if it lessens your fatigue or anxiety for the following hour 1-2, then you need more magnesium.

best of luck and health.

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I take 400mg a day and try to do an Epsom salt bath a few times a week ...

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I also had palpitations. All the time. I would often drive to the ER and sit in the parking lot convinced I was going to have a heart attack but knowing it was anxiety driven. I never went inside but I was scared enough I wanted to at times. I would talk myself down and return home. Palpitations are a symptom of B12 def. At the time I did not know I was deficient as my Dr thought it was all in my head. After supplementation it went away although I remain tachycardic even at rest. Even though my HR is high I no longer feel palpitations or missed beats.

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I have been taking methyl B12 for four years, 1 ml every other day, and while it did help a lot and reduced many of my symptoms, tinnitus being one of them, the fatigue, the heart palps, the muscle weakness were still there. Recently I changed to hydroxy B12, 1 ml every other day, and have noticed much improvement with my energy and stamina. I've learned that it's important to find the right type of B12 for you. Good luck!

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Thank you!! Do you take supplemental adeno with your Hydroxo B12?

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According to the data I have you use adeno B12 for methyl B12 pathway completion but it's not needed with hydroxy. I used to use it with the methyl but not now. So far so good.

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Where do you source Hydroxy from. Are you in the US?

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I live in the US and have a compounding pharmacy that I buy from with a prescription from my doctor. I was surprised to learn they have it at CVS pharmacies too.

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How many shots did the doctor prescribe per month. Can i contact you on the chat? TIA..

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I am currently doing 1 ml IM shot daily; I used to do methtyl shots every other day but continued to have numbness so decided to try every day shots. Yes, go ahead and contact me through chat...not sure how that works but will probably figure it out!! LOL

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Just hang in there and be patient.....you will eventually feel better. I remember my early days when I was buying slow release and sublingual vitV12 tablets to get stock up but it takes time. Lots of good advice above though, people much more knowledgeable than me. Wishing you all the best x

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I also had major anxiety. It very slowly got better but I noticed the real change when I started taking a low iron supplement. My saturation level was low. I never had a clue. Don’t think anyone ever checked my iron level until I was 41. Crazy. My ferritin was always at a great level but wasn’t being used properly as my b12 was only at 114. Ever since starting cyano it has fallen dramatically because it can finally be used properly. Anxiety is definitely a side effect of low iron. Good luck. I hope it gets better quickly:)

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Thank you I'll try to get them to test it!

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