Some Days You Don’t Forget

There are days that we tend to remember more than even our birthdays. They etch their way into our brains, refusing to be thrown out and forgotten. For some they might be traumatic events, for me, the event I am about to tell you about is exactly the opposite.

I went misdiagnosed with my health issues for several years.  Eventually I found a doctor who confirmed my suspicions of being hypothyroid, but gave me worse news than that–I had a pituitary gland tumor (adenoma), which was incurable, and I would have to be on medications for the rest of my life for all of these problems, and, especially, if I ever wanted to conceive.

I spent the next few years proving him wrong… except one problem still persisted–I still had headaches, still lactated, still could not reach a menses on my own… and still could not conceive. Every day became harder to survive, longing for one thing I seemed not able to have–a child of my own, and a perfect health. I knew that I was doing all that I could, but something was missing.  At times it was only God’s strength that I leaned on, to not give up and press forward.

Last Year

Journal Entry

2:30 AM 7/18/2011

Good to Me

I feel that I am on the precipice of the biggest breakthroughs of my health life and research.  I few nights ago I could not fall asleep [on 7/15], so I stayed up and did some soul searching and probing, trying to figure out my present health status. I still have some annoying symptoms lingering that I have not found a solution to:

  1. elevated prolactin–Doc insists I have a pituitary gland tumor, tests sure support it, as well as symptoms, but I still don’t want to accept it. Even with medication, I still lactate; and my cycles are getting longer 30-39 days
  2. infertility (I am not sure if I am ovulating, but most likely not), due to the same issue
  3. my hair started to fall out more than usual, since going on medication
  4. the nails on my thumbs are still brittle and break
  5. I have a major nerve spasm, especially on the right side of my body, esp. inside my ear, my neck, shoulder blade, arm, right hand thumb, and at times upper leg
  6. occasionally light-headedness/dizziness, worse since going on meds, now even when I get out of a chair to walk
  7. geographical/sore tongue
  8. excess/unexplained sweating
  9. dry skin inside ears, dry lips; my facial skin changed dramatically in the last couple of years
  10. occasional heart palpitations, only in the last few years
  11. occasional hyperactive bladder, especially around bed time, all since recurring urinary tract infections because of birth control
  12. dark under-eye circles
  13. dandruff
  14. easily bruised

I started by looking into B5 deficiency, following what I discussed with the specialist from South Africa.  I was zeroing in on the nerve spasm [#5].  However, it did not add up.  The foods that I consume would prevent B5 deficiency.  So, here is the rest of the story of my research, as I related it to one of my friends:

“I had been neglectful with B12.  I know that’s bad.  I was so preoccupied with everything else that it just was pushed back… so not like me.  I did not get tested yet, but want to.  I am trying to get in to see my doc ASAP, but the soonest I could get in was in 3 weeks. YEEK!  By then I will already take care of the problem. 

When we lived in WA I was taking VegLife sublingual B12 at 500 mcg.  I did not realize that it might not be enough.  Then, when we moved, I sort of did it on and off.  What I did not think about is that I should have tested for it annually.  Want to know what prompted me to think about it more?

Since 2001-2002, having gone through a lot of stress, I developed a muscles spasm/twitch.  It started off with my forehead (that was way before my vegan days).  I only contributed it to the severe stress and thought it would improve with time.  Alas!  When we moved to FL in 2003 it got worse.  By 2004 I was begging God to at least move it off somewhere where it would not be so obvious and embarrassing.  I don’t know if it was an answer to my prayers by the spasms/twitches moved into (yes, INTO!) my right ear, neck, and most of the right side of my body.  I did EVERYTHING humanly possible to stop it, but nothing worked.  Self-control was not an issue, and self-retraining/reconditioning did not help.  It got worse at times, when I was tired or under pressure. 

The best way I can describe it to you, and that is what kept pushing me to research it more and made me think that there is some deficiency, is that if you imagine having wires that were stripped of their coating in some places, which would cross once in a while, creating an energy shortage and sparks—that’s how it felt in my body. 

I consulted with doctors and NDs, but, as you can imagine nothing helped—and most did not even know what to tell me, so they ignored it.  One did mention that it might be B5 deficiency, but the more I researched it the more I knew it could not be… in addition to that, the supplements she prescribed me did not help. 

A few nights ago I had an epiphany.  I could not fall asleep, so I hopped on the net and did more digging into B5 issue.  After a couple of more attempts at trying to fall asleep I gave up and something struck my mind—I Googled B12 deficiency symptoms.  As you can guess, one of the side effects is neurological in nature.  It is totally possible that my nerves are stripped of the insulation, which I suspected for the last…. 5 years.  But… I kept on searching.  And you would not believe what I came across!  I actually found TWO studies that pointed to correlation between B12 deficiency and…. INFERTILITY!  I could not believe it!  

Check them out: 

I sat at the computer, staring at the screen, thinking, “Could it be?!”  Then I did even more digging, and came across this thread: 

I ended up ordering the book, which I should have in a couple of days. 

Immediately, the next morning, I tried scheduling an earlier appointment with my Doc, but could not get in for 3 weeks.  You know I cannot wait THAT long to figure it out.  So, I already had some B12 at home, although the nutrition store ordered cyanocobalamin instead of methyl in error, but I had to do with what I had for the moment.  While finding a better, higher dosage with a vegan option (which I found with Jarrow 5000 mcg), I started taking 5000 mcg of what I had at home.  By day 2-3 my spasming eased up a little.  Of course, you know me, I was hoping it was not a placebo effect, but now on day 4 I find that the rage of my muscles spasms are calming down a little, and for me that is a great sign, and an indicator that I am right with myself diagnosis.  I cannot wait to start with 5000 mcg of methyl B12, and… conceive!  

I think this might be the missing puzzle, although I am cautiously optimistic, praying that this is the answer to my prayers.  The worst that can happen, since b12 is not toxic, is that I might have loose bowel movement, but so far it had not been an issue–I have been breaking 5000 mcg into 3 intakes throughout the day.”

Tonight Hubby and I had our pillow talk—I shared my heart with him. Needless to say, our conversation did not relax and put me to sleep, rather it energized me and gave me even more to think about.  I still needed to research remaining issues to see if there is a connection.  I made a list of what I was still experiencing and went off to research for those keywords specifically.  I guess it should not have been a surprise when all of them checked out against a possible B12 deficiency, with #1 being a likely possibility.

I found even more provoking information.  There is actually a whole movement in the UK surrounding this issue, where an Indian born doctor was able to treat over 700 of his patients, with symptoms ranging from depression, MS, hair loss, etc., with simple injections of B12, although just in my head, based on everything I read so far.

How can I sleep now?  Now more than ever I need to get my tests done so I know for sure.  And, if indeed my B12 is low, and I have not yet conceived, I am planning to insist on B12 injections and get off prolactin suppressing medication.  I think that I will prove that I will be able to reverse all of the remaining issues by doing so, and then successfully conceiving.

If that is the case, and this is the path my God has chosen for me, I am ok with not conceiving until that happens.  It is not easy for me to say, albeit a bit joyful, because I will be at peace with my child not being subjected to any medications while s/he will be growing inside of me. It this is the case, let it be, Lord!

Following this journal entry I went into research mode full force. I shared my finding in the following posts on B12:

Journal Entry

8/04/2011

What If…

Today is Day 7 of B12 injections.  As of tomorrow we will be doing only 1 shot a week for 4 weeks and then 2 shots every month.  There were some improvements already in my health, however, as excited as I am about the process, I can’t help but wonder… What if all of the expectations I put into the treatment come short of what I expect the outcome to be?

What if not all of my problems get resolved?  What if prolactin goes back up?  What if… What if…

I know for a fact that I will not be worse off with the treatment than I was before, but will I get better as I expected and want to be?

I have been a bit down in the last couple of days and I am not sure why.  There is not much motivation to write, research or study for my fitness exam.  I honestly don’t know what else to do to shake this sluggishness off.

I am still waiting for my lab results; we already heard about Hubby’s.  We’ll see what my results say.

My breasts have been hurting for the last 3-4 days, but in the last couple of days sensitivity went up exponentially.  I am not sure what is causing it.  It could be, although I do not want to think about it, that since I got off prolactin suppressing medication, that prolactin levels are going up, causing milk production.  Even the thought of it, however, makes me want to cry.  I sure pray that it is not the case.

I have too many questions, very little drive today, especially after a couple of restless nights, and no one who could give me an answer.  Oh how I wish things would finally change and look up for me.

Followed by more research and updates:

Journal Entry

9/6/2011

Waiting

It has been five weeks since we started B12 injections, and just over six weeks since I went off adenoma meds. By the second week off meds my breasts were tender to the point of pain and by third week lactation increased. I also broke out all over my body for about a week; my facial skin became dry and porous. The pray my body heals this problem.

Meanwhile miraculous healing began to take place with B23 injections and sublingual intake (I am doing both).

  1. By week 1 nerve spasming let up, improving by about 50%, especially inside the right ear;
  2. Skin dryness, once severe inside ears, improved tremendously;
  3. teeth clenching subsided;
  4. night sleep/rest became deeper and more rewarding;
  5. the hair is not falling out as much;
  6. urination urges, especially before bed time, are 95% gone, so I am left with only what is normal;
  7. I am not sweating as much–about 80% improvement; and, most importantly,
  8. my body tried to reach a menses on its own a couple of times;
  9. my basil body temperature began to rise seven days ago and stayed up since.
I am still praying for more healing, but the reality of my body finally hitting the final healing stages is finally here. I am continuing to pray and expect for:
  1. lactation to stop altogether, and
  2. I either reach my first “unassisted” menses or, better yet, had conceived–I should be able to find out in about 7-10 days for sure.

Up to this point in our lives, although several years in making, we had strongly held onto our hope and faith that one day we would be able to conceive without any intervention. I believed that God gave me a self-healing body, and I held on to Him with all I had in me to prove it right. I decided that no matter how painful it was emotionally, I would keep waiting and believing, even if it took me a lifetime.

These two things were our reminders not to give up–the note was plastered on my bathroom mirror, and the little outfit was hanging in our closet–a constant reminder of the inevitable.

B12 treats infertility

Journal Entry

9/14/2011

It is!

On the way home from the gym I decided to stop by the pharmacy and grab a new BBT thermometer. While there I noticed pregnancy tests and decided to grab a pack… just in case. When I got home, without telling Hubby anything (it was his day off, and he was busy working on his homework), I went to take a shower and… while at it, took the test. I was doing the usual thing, getting ready to hop in the shower, when I looked over and saw it……..

We are expecting!

B12 injections treat infertility

For a moment I did not know whether to stare at it, cry, shout, smile, or run out and tell Hubby, or maybe surprise him with a special date and tell all bout it. It was too surreal to believe, and yet too real to ignore; after all, I knew this day was going to happen.

By my calculations we are about 15-16 days along now. I am going to see my doctor tomorrow to be sure, but, Lord, let it be!

September 14, 2011

The news was too much to hold to myself, plus we made each other a promise, that I would not make Hubby wait if I found out we were pregnant.

I later told this story in details in this post:

Following by more happy posts and updates on the progress:
You see, some days and moment seem insignificant, but you never know what they might lead to. At times you just have to trust that even a sleepless night can lead to something so good, as my precious baby girl.

(Sprout 57 days old)

As of today, most of the symptoms have resolved themselves, yes, including the pituitary gland tumor–six weeks into B12 treatment the lactation stopped and headaches were no more. I lactate now for different reasons ;), well, for A REASON, really–my little Sprout.

I still have a minor nerve spasm when I don’t get enough rest or am upset, but that was a possibility, since my problem was ignored for years by my doctors. Other than that, I can tell you that I can cross out everything else on my lists… well, except some dark circles under my eyes, but now they are due to having an infant and not getting all of my needed beauty sleep ;). However, I am not complaining!

So, never waste a moment! Not even a sleepless night. I will never forget July 15, 2011!

And remember:

THERE IS POWER IN NOT GIVING UP!

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  • http://www.facebook.com/people/Rachel-Miller/100000680211472 Rachel Miller

    Your story (as I’ve said before) gives me so much hope.  Amazing that it was only a year ago that all this happened for you and now look what God has done with your life…your a mom and a teacher for all of us.  I pray that this time next year I’ll be able to look back and say “Look what God has done for me!” I am planning on getting my B12 levels checked soon (dr is on vacation now…of course! Ugh!)!  Hoping and praying this is the “cure” to all my health issues! :) 

    • http://www.vega-licious.com/ Elena

      Thank you, Rachel! That was the reason I began to share my life, so others can know that there is hope for all of us ;)

  • Caoileann

    Hi Elena!  I’ve subscribed to your site for a couple of months now and you are very inspiring!  I’ve been hypothyroid for almost ten years, but was only diagnosed two years ago, if you can imagine.  I felt like I was recovering from chemotherapy my energy and fatigue were so extreme.  I became adept at looking like I was functioning like a normal person, but I was anything but “normal”.  

    B12 is something I have been tested for in the past.  Last May I had a rate of 655 (it was 416 in Nov ’09).  I have asked for b12 shots from my doctor, but she told me that I don’t have pernicious anaemia, so I don’t need them.  I don’t beleive this is accurate – do you have any thoughts on this? 

    Thanks! 
    Keelin 

    • http://www.vega-licious.com/ Elena

      Keelin, hi! 

      Yes, I can imagine. I went misdiagnosed for 5 years myself. 

      Thoughts?! Have a ton.

      1. What is your diet like now?
      2. Even if you don’t tested deficient for B12 it does not mean that you aren’t. Mostly the blood serum test is using when testing, and mostly… it is unreliable.  The benefit of doing B12 therapy is whether you are deficient or not, you will benefit. If you read through B12 series or downloaded the report you know that hypo people are susceptible to be low on B12, especially if they are on meds. B12 IS A MUST HAVE supplement for EVERYONE!
      3. There are other things you can do to help your body heal along with B12

      And I know all too well about looking great to the outside, but feel like I am dying on the inside. I am wishing you what I have now– a life of health! 

      • Caoileann

        Elena!  Thank you for your fast and thoughtful response!  I take 3000 mg of sublingual methyl b12, and I try to remember to take it daily.  My diet is pretty good – I make green smoothies and I’ve been vegetarian since I was around 15, and have been transitioning to a more vegan, plant-based diet in recent months.   I notice a difference when I follow a plant-based diet.  I am going to pressure my doctor for the b12 (and possibly iron – my ferritin was 13 7 months ago) injections and see if they make a difference.  Fingers crossed J
         
         

         

        • http://www.vega-licious.com/ Elena

          All plant based certainly makes the difference. B12 injections is a great idea. As for iron i wouldn’t. B12 helps iron absorption (as well as vit C does too), so if b12 is there and you eat iron rich foods you should be ok.

          Keep me posted.

          • Caoileann

            I’ll keep you up to date Elena – thanks so much for your guidance :)

            • Caoileann

              Hi Elena, so I thought I would offer you an update.  I heard back from my doctor re my b12 results, they are 444 (the range is 200-1100), so yet again, I am in range, but symptomatic – not the first time this has happened, so needless to say I am furious!

            • http://www.vega-licious.com/ Elena

              NO! YOU ARE NOT in range! Dumb American ranges are wrong! Overseas you have to be over 550 to be considered “normal”. Be furious! Fight for it! Do you want my docs phone #? He could do over the phone consult and a prescription. I could also give you my pharmacy’s info. DO NOT LET THIS GO! 

  • http://www.adorpheus.com Adrienne Orpheus

    thank you so much for your inspiration, because of you I know not to give up on my dreams… You conceived against all odds and you are a shining example of the power of faith

    • http://www.vega-licious.com/ Elena

      Thank you for reading, Adrienne. And yes, giving up is not in our DNA ;)

  • Trhgoogoo

    You are such a role model for everyone! You don’t give up, and you search out answers for what you need, you listen to YOUR body, something doctors don’t sometimes do…We are our own Health Advocate. You have been through an incredible journey with you health….and now onto your other new journey ;) with your Little Sprout…You have so much Joy ahead of you! God’s Blessings to you and yours Elena. I know you make HIM smile!

    • http://www.vega-licious.com/ Elena

      Thank you!

  • Falconld

    Elena, I am so proud of you my dear friend and all your hard work, research, and most of all faith. You are such a wonderful example of faith in action and there is healing for others in everything you do and we appreciate you.
    Thank you Elena!
    Cindi Riddle

    • http://www.vega-licious.com/ Elena

      Thank you!