For over 30 years I suffered with an unknown illness. Remember that show Mystery Diagnosis? I lived it. Everyday. I looked completely normal on the outside, but on the inside I was a royal mess. My body was shutting down. I knew for so long I was different but doctor after doctor told me I was perfectly healthy. My lab tests came back somewhat normal but they were all the wrong tests. I was given prescriptions for depression and every birth control product under the sun. But I knew it wasn’t the answer. My body was screaming for help and there was little fight left in me.
Then came the summer of 2015 at age 31 when a progressive small-town doctor finally discovered I had a vitamin B deficiency. My life’s goal is to help people discover what took me over 30 years. I experienced some pretty bizarre symptoms with a severe B9 (folate) and B12 (cobalamin) deficiency, which left so many of my doctors stumped. In my experience many doctors are not aware of the symptoms of a B vitamin deficiency or at least not all of them. It is unfortunate that they are taught in medical school how to prescribe drugs to treat individual symptoms, which is why I was being treated for menstrual issues and depression. Not a B vitamin deficiency.
I list all of the symptoms I experienced as a child into adulthood. You may have all or just some of my symptoms depending on how severe your deficiency is, but if you have any I strongly urge you to be tested. If you suspect you have an issue, read my post on how to treat a B vitamin deficiency naturally.
Leg and arm cramps
As a child I would scream myself to sleep from the cramping in my legs and arms. It was like a Charlie horse feeling and it typically happened at night.
This was a completely different sensation than a leg cramp. It’s like my legs were telling my brain they wanted to move. If I had to relate it to anything it would be an unscratchable itch. Upon moving and stretching my legs the sensation was relived but never fully satisfied. Again this happened typically at night, right before I would fall asleep.
This wasn’t as noticeable when I was a child but into my teens and twenties it became a problem. I couldn’t remember things like my phone number, address, even where I parked my car. School was a nightmare. There were times someone would have just spoken to me and I would forget everything they said. I had to write everything down. Then I’d forget where I put the piece of paper.
Sure people forget things all the time but this was above and beyond normal. My life was like the movie Momento (which is a good movie by the way). My memory loss was likely due to high levels of Homocysteine (an amino acid from eating animal protein) that is normally kept in check by folate in healthy individuals.
My period was never normal or easy. It was never textbook 28 days.
When it came it was so heavy, I’d constantly have to change my feminine products. There would be clots. My cramps were unbearable. I remember skipping school my period week because of the bleeding and the pain. I made plans around my period because it controlled my life. If you struggle with crazy periods and/or infertility, read my post on PCOS, especially if you eat a lot of sugar and carbohydrate foods. No one ever told me I could balance my hormones with food, but it is entirely possible and I have begun the arduous journey.
Okay so we all get hungry. Starving sometimes. But hypoglycemia is so much different. To this day I don’t feel hunger. I feel ravenous.
Like feed me now or I’ll kill you.
I remember it happening for the first time right before I got my period when I was ~13. To this day I get physically shaky, dizzy, mean, forgetful and lethargic. I also crave foods that will instantly bump up my sugar like candy and sweets. As a teenager my doctor diagnosed me with anorexia because I was so thin, but my mother argued I was a bottomless pit. She was right that all I did was eat. Too this day I have to carry food with me everywhere I go. I am constantly hungry unless I eat foods that fall in the Atkins/Paleo/Keto spectrum. I’ve learned that my trigger is eating sugary foods or carbohydrate-rich foods so I avoid them at all cost.
Since I have now corrected my B vitamin deficiency and I still have problems with hypoglycemia, it may be related to a different issue (like some sort of insulin sensitivity) or it is in fact related to the MTHFR mutation. I don’t know. In any case hypoglycemia comes with its own set of nasty symptoms and needs to be managed with a proper diet. Update: my hypoglycemia is the result of insulin sensitivity and I’ve been diagnosed with PCOS.
My depression wasn’t constant. It would wax and wane with my menstrual cycle. Two weeks before my period it would be the most intense. I would be so incredibly sad for no obvious reason. I knew I should be happy because I had a wonderful life but there was no justifying my way out of it. On the bright side I was extremely reflective and creative. But on the dark side I constantly longed for a different life as if somehow that would make me happy. There was a deep hollowness that nothing could fill and no one understood. Turns out B vitamins are a key ingredient in making the neurotransmitters that keep us happy. Without adequate B9 (folate) and B12 my body didn’t have the proper tools to make these neurotransmitters.
Racing thoughts, trouble sleeping
This happened frequently but especially right before menstruation (it would usually start the next day). I would get sleepy, go to bed, but right as I would start to fall asleep I’d wake up. Like I drank a cup of coffee awake. I’d replay the day in my head over and over. Then I’d replay some other event, wishing I could have done something or said something differently. I’d become stressed about the dumbest things. I’d finally fall asleep around 3-4am and wake up a horrible mess. Again B vitamins, after a long line of chemical reactions in the body, form neurotransmitters. The kind that keep us happy and help us sleep.
This is a strange one. I would experience the urge to move a certain part of my body. Sometimes I would need to blink, other times I would have to move my neck. When I would do so the urge was satisfied for a few seconds until it came back again. It was most intense two weeks before my period. And disappeared upon starting my period.
I first thought to test my thyroid when I started loosing a lot of hair. Sure we lose hair when we brush it, after we wash it, etc. But when I noticed a ring of hair on the floor surrounding my office chair I knew something was wrong. I was also experiencing flakey, peeling skin on my face, especially on my cheeks, nose and forehead. I had no energy. I was gaining weight. When tested in 2014 my TSH was ~7, which is high considering the optimal is around 1.5. Since I have addressed my B vitamin deficiency, my TSH levels are now in the 1.2-1.5 range (as of 2016). I believe now that I have addressed my hormone imbalance my body is able to remove excess estrogen much more efficiently. Estrogen blocks the thyroid hormone (TSH) causing the pituitary to release more and more. This may be why I had high TSH but normal T3 and T4 values.
Intolerance to birth control
Birth control has never worked for me in terms of regulating my menstrual cycles or mood. I’ve tried the high estrogen pills, the standard formulation, and the low estrogen variety. On the high estrogen pills I was constantly fainting and my blood sugar was always low. Nothing I ate would satisfy me. My depression worsened. I wasn’t just depressed two weeks before, now it was constant. I became apathetic and didn’t really care about anything or anyone. The standard formulation pills were better but I was still sad. The low estrogen pills made me bleed. Constantly. I wore a day pad everyday for 2 years. I was willing to put up with the bleeding for a slight relief of my other symptoms.
B vitamins are crucial for helping the liver eliminate toxins from the body, especially estrogen. The low estrogen pills worked for me because my body was better able to process them, but they still weren’t a perfect fit for me. Going off birth control and balancing my hormones naturally has been so game changing for me. If I would have known what I know now I’d never have taken birth control. I was putting a temporary band-aid on a larger issue and it masked the true reason for all of my health problems. Now that my husband and I want to start a family, the hormone problems I previously ignored are giving me a lot of trouble. I truly wish I had addressed them earlier.
I had trouble coming up with words. Stringing together a coherent sentence was extremely challenging. In my mind I would know what to say but when it came time to talk it would get scrambled and come out differently than I had planned it. Sometimes my mind would go blank and I’d forget what I was going to say. There were times I’d studder words but not often. The interesting thing is that when it came to writing my thoughts I never had an issue.
I would get a recurring itchy rash on my wrists. It was roughly oval in shape with small red bumps. It wasn’t anything too serious and was easily treated with cortisone. However it was likely from the fact I wasn’t able to detox environmental toxins properly as B vitamins play a crucial role in helping the body rid itself of toxins (pesticides, estrogen, etc).
I would get random shooting pains or tingling in my legs and toes. It didn’t last long but it was definitely uncomfortable. B vitamins are important for the sheathing around nerves and is likely what was causing my pain.
The type anemia I had was not from low iron, which most people are familiar with. Rather I had megaloblastic anemia which causes a low red blood cell count. Since red blood cells transport oxygen throughout the body, I was extremely tired and short of breath doing even simple things. This is a hallmark symptom of a B9 and/or B12 deficiency however I was never tested for it. A simple red blood cell count (RBC) or complete blood count (CBC) is step #1 in testing for this type of anemia.
With all of my strange symptoms I didn’t want to be around people. I was embarrassed, ashamed, and frustrated with myself. I had no confidence, especially since I couldn’t rely on my body to function normally. I became a recluse and many areas of my life suffered.
The first 30 years of my life were very challenging. I truly hope this post can help people that are struggling with strange symptoms that may be related to a B vitamin deficiency. It’s not something doctors typically test for. However they should for many reasons: 1) there is a prevalent genetic reason why people aren’t getting enough B vitamins (MTHFR gene variation), 2) people in general aren’t eating enough vegetables, dark leafy greens, and legumes, and 3) it is a very simple blood test. It’s simple, inexpensive and very treatable so there should be no excuses why more doctors are not testing for this. I was lucky that one doctor out of so many finally treated me.
Do you have any of my symptoms? I’d love to hear about your journey to better health!