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caitie101 profile image
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Hello, everyone. This is my first post. I'm 23 years old and have been having health problems for the last 3 or 4 years. I was diagnosed with POTS, Ehlers Danlos Syndrome and hypothyroidism about 2 years ago. It seemed like things were getting better for awhile but since late last year, things have taken a turn for the worse. I started having severe anxiety/panic attacks, dizziness, a really intense "far away" kind of feeling, horrible trouble concentrating, and my tachycardia and fatigue were at an all time high. I had also been having hair loss for about a year that seemed to get worse within the last few months. I had several tests done including getting my thyroid checked again and everything came back normal. Through my own research, I discovered information about b12 deficiency and began to suspect that I might have it since I have been vegetarian for about 5 years until recently and really haven't been including any good sources of b12 in my food for quite some time. I checked some of my old blood tests and saw that I was tested for serum b12 just once in late 2016. The results were 255 pg/ml. The standard range given was 211-946 pg/ml.

I didn't want to wait to get in and see my doctor to have everything checked again as I was feeling extremely desperate at that point, so I got some cyanocobalamin 5000 mcg sublingual tablets and started using those to see if they would help. I noticed some minor improvements in the first week including increased appetite and a little less anxiety. After reading more about the different types of b12, I got some methylcobalamin sublingual tablets in the same dosage to see if they would be better for the mental symptoms. They seemed to be okay for a bit. After continuing to supplement for another week or so, I noticed my fatigue and dizziness getting horrible again, maybe worse than ever, and just recently, the awful mental side effects have been getting more pronounced again. I have also noticed some burning/pins and needles feeling on and off in certain parts of my body for the last few days. I've been supplementing in total for about a month now. I've read that certain things can get worse before they get better, but I'm not sure if that's what is going on with me or if it is something else. Should I give the b12 more time to work and see if this is just part of the healing process? Or should i assume the b12 isn't working for me? I've also been taking a multi vitamin and am trying to get more food with potassium and iron just in case. Any help would be greatly appreciated.

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caitie101
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caitie101 profile image
caitie101

I would also love to hear anyone's experience with poor memory, feeling "far away", anxiety and other mental issues in relation to this. I think it would help me to feel less alone knowing that others have experienced similar situations.

Marz profile image
Marz

I am not a B12 expert but am aware of how other conditions can be linked. Is your thyroid being well treated ? - do you have Hashimotos ? Were other tests done - Folate - Ferritin - Vit D ?? Taking a B12 supplement before testing can skew your future results.

It is important to test before supplementing ...

Nackapan profile image
Nackapan

I expect you need B12 injections

With your health problems they are known for absorbtion problens. Have you had ferratic iron and folate checked on your bloods? Are you on medication for your POTS? A salty diet and loads of water ect. I hope your doctor gets the right bloods done and consider b12 injections

username7 profile image
username7

Same... EDS, POTS and B12 deficiency symptoms. Started oral methyl in March and felt great for about 2 weeks and then crashed HARD. Started shots in mid-April and they are helping a ton. I am now getting 2 per week (methyl, cyano does nothing for me). One per week wasn't doing it-- I would crash after 3-5 days. I am also taking a sublingual methyl daily. Getting test results later this month (they're testing MTHFR, IF AB and parietal AB).

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