Tuesday, January 17, 2012

My Battle with Hypothyroidism

This post has been a long time in coming, mostly because I do not like to be a downer and I am also not very good at sharing negative private things about myself.  

I have a chronic auto-immune disorder called Hashimoto's Thyroiditis.  Auto-immune diseases are fairly common this day in age and since I am a research fanatic (seriously I may be more addicted to research than to fabric [insert gasps here] ), I do have a few theories on why this is, but that would take a whole other series of posts.

Hashimoto's is a type of hypo-thyroidism where the body attacks the thyroid.  Basically, in my case, the disease is genetic and familial.  My body thinks that my thyroid is the enemy and creates antibodies that attack my thyroid.  I went for years without knowing what was going on, until 2010 when I ended up in the ER with dehydration and mild edema (despite the fact that I was drinking over 10, 8 oz glasses, of water a day.).  Of course the ER couldn't find anything that was out of "normal range" on the tests so they filled me up with electrolytes and sent me home.  That is where my journey really began.

The reason for writing this post is not to gain sympathy but to impart the wisdom and knowledge I gained onto others with a similar condition.  Recently I was out with friends and one of them had been dealing with thyroid problems and treatment for years to no avail.  After sharing some information with her, I decided it was time to share my story.

There is a LOT of crappy information out there regarding hypothyroidism.  If you are dealing with hypothyroidism, I highly recommend going to the website, Stopthethyroidmadness.com, and then buying the book, Stop The Thyroid Madness, by Janie A. Bowthorpe. 

Some other good informational websites:



Here is my story:

Before I knew I was pregnant nearly 5 years ago, this line about 2 inches above my collar bone on the right side of my neck looked swollen.  It didn't hurt but it was definitely this puffy line that you could see my pulse in.  Having been working out daily (weights, cardio and swimming) I assumed I pulled some weird muscle and took it easy for a few days.  The swollen line got smaller.  

A month later I found out I was 10 weeks pregnant and went in for my first pre-natal appointment.  The doctor immediately noticed the swelling on my neck and did a physical exam.  It was my thyroid that was swollen.  He did a blood panel and everything came back "normal".  Apparently it was just a goiter and common during pregnancy.  They would keep a watch on it and that was all. 

Throughout my pregnancy the goiter would get very large and then really small.  All the while all the doctors and specialists told me it was fine.  It even freaked out some co-workers when they would see it enlarge, which was fairly amusing. 

I had a healthy baby and for the most part the goiter went away after giving birth.  

During the post-partum period I noticed that certain foods triggered the goiter.  Broccoli, cabbage, non-organic meats and poultry, were a few items that would cause the goiter to get noticeably bigger.  We cut down on those items in our diet and I tried to buy meats that said, "no added hormones."  Things continued this way for almost 2 years. 

Then in the early spring of 2010 my pulse started going all over the place from 50 beats per minute to 130 without me doing anything.  My blood pressure was randomly dropping so low that I would almost pass out and then it would skyrocket and I would feel like my head was going to turn red then purple and explode.  After about 3 days of this (all the while not having caffeine, or salt, or hormones), I ended up in the ER because my heart was starting to hurt and I noticed that I was developing edema on my legs, arms and chest.  This is when they found that I was very dehydrated.  

That is where my more difficult battle began.  I was discharged from the ER with nothing more than, "you were dehydrated, we filled you with electrolytes.  See your doctor."  So I went to my doctor, they did full blood panels on everything.  Everything came back "normal".  I pushed for an ultrasound of my thyroid, knowing that this had been an issue AT LEAST since I was pregnant.  The ultrasound found that I had a rather size-able goiter that was pushing on my trachea and I needed to see an endocrinologist (supposedly a thyroid specialist).  The endo said that I should have it biopsied.  

I hate biopsies.  I've had some of the most painful procedures done including having blood taken from arteries several times in the same arm, and still, biopsies SUCK.  But I did what I had to do, extremely nervous since they were going to have to go right next to the carotid artery to biopsy the goiter.  The biopsy came back negative for cancer in the cells they got.  However, the type of cells in the goiter actually rendered the biopsy inconclusive because with this type of cell the only way to tell if there was cancer or not would be to remove the goiter (and the half of the thyroid the goiter is on) and slice it apart piece, by piece to look for mutated cells. 

On the one hand I was tired of feeling like I was choking and tired of feeling like crap combined with the possibility of it being cancer had me wanting my thyroid out right then, on the other hand, I had been through surgery before and was in no rush to go back under the knife.  

After my first endo appoitnment, before the biopsy, I was put on synthroid because while my blood results were in the "normal range" as far as the lab determines, they were NOT normal for my age or for having a high quality of life.  The synthroid mildly helped my symptoms.  

While researching the cell types and thyroid surgery, I decided to continue treatment with synthroid and see if the goiter got smaller.  After three months on synthroid, constantly increasing the dose to try and get my lab numbers better, the goiter had gotten bigger and a new goiter was forming on the center of my thyroid that was causing my voice to sound scratchy. 

At this point, I opted for surgery and had the goiters along with half of my thyroid removed.  Don't let anyone lie to you, thyroid surgery is painful and recovery sucks.  You spit up all kinds of crap, including blood and the only pain medicine that was mildly helpful was morphine.  I have a fairly high tolerance for pain. I mean, I got to 6 centimeters dilated while in labor without flinching, not even realizing I was in labor just assuming that it was mild cramping.  However, this was a kind of indescribable pain that never let up.  The only time I could sleep was when the meds they gave me (which really only made me feel disconnected from my body but still left me in pain) forced me to sleep.

Here are a few pictures immediately after surgery and a few weeks after.  Scroll down past them, if this stuff freaks you out: 

One day post surgery:
This is me on drugs that don't stop the pain, but space your brain out enough that it can't figure out what the heck is going on:
3 days post surgery, after getting to shower and take off the guaze.
10 days post surgery: 

Six months after surgery I was still feeling tired, bogged down and just barely able to handle life.  I closed my alterations and custom clothing business because it was too much.  I would go to bed around 9:30 PM most nights and still not be able to get up at 8 AM.  I was constantly depressed, angry or sad, that's if I felt anything at all.  Most of the time feeling things took too much energy and so I lived in kind of an "ick" state.  

From the April of 2008 to July of 2011 I went from weighing 135 lbs to 168 lbs even though I was eating only 800 calories a day, running most mornings (which was a feat in itself because just getting out of bed was difficult), and on thyroid medication.  This certainly did not help my depression. 

It's hard to explain how very down in the "depths of despair" (to put it in an Anne of Green Gables way) that I was.  It was nearly impossible for me to exist.  Everything I did felt like it took absolutely every ounce of energy I had in my body to do it.  There were days when I was too tired to lift my arm.  I cannot even tell you the number of times that I would get up, feed my toddler and then lay on his bedroom floor and sleep while he played.  It's a terrible, terrible state to be in.   

Finally, in January of 2011 I found the Stop the Thyroid Madness website and bought the book.  I read it from cover to cover, highlighting and taking notes.  Then I read it again.  Then I took it to my endo who told me that the information in the book didn't matter since she was a doctor and that I had probably just developed another autoimmune disorder like fibromyalgia.  Which considering my symptoms was plausible, but only if you ignored everything else about the fact that I had thyroid issues.  

All this time she was only testing my TSH.  She never pulled labs on my Free T3 or Free T4, these are IMPORTANT!  You can learn ALL about them in the Stop the Thyroid Madness book, or on any of the website links I posted at the beginning. 

When I asked this endo about my weight issues she said that I should stop eating dinner and start working out harder.  How could I work out harder?!  I barely had the energy to run as it was let alone work out harder!  And skip dinner?  Seriously?  I was 800 calories a day, how was skipping a meal going to make me thinner?  I may as well have been anorexic at this point and I still would've been putting on weight. 

This began my search for a new endocrinologist or thyroid doctor, or anyone who would address my symptoms and know more about thyroid disease and treatment than your average endocrinologist. 

I saw 4 different endocrinologists and doctors before I found a doctor that knew what I was talking about and able to help me. 

In March of 2011 I started on dessicated thyroid hormone.  In just 4 weeks I felt 50% better than I had in years.  It wasn't enough though and when I reached 3 grains a day my lab tests were saying that I was almost hyperthyroid but my symptoms were not.  I was still waking up with a very low body temperature 96 degrees.  My heart was still averaging at about 70 beats per minute, my hair was still falling out and I was still tired.  

After a lot of research I discovered the Reverse T3 ratio.  A case where you have so much free T4 that your body starts to turn it into reverse T3 instead of usable T3.  T3 is the active hormone in your blood that keeps your heart going, gives your cells and body energy, and essentially keeps you alive.  T4 is just a storage hormone that your body is "supposed to" convert into life-giving T3.  I had my doctor run the test for Free T3 and reverse T3 to determine The Ratio, that is a link to a ratio calculator.  My ratio was around 18 so I was experiencing reverse T3 issues.  I joined the reverse-t3 yahoo group to learn all about how to treat reverse T3.  

  I continued to do research and came across a story about a patient who had Hashimoto's and learned about LDN (low dose naltrexone).  I read, and read, and read about LDN.  I joined the LDN yahoo group, I bought books about LDN, like Honest Medicine by Julia E. Schopick.  Great, great book by the way, Highly recommend it for EVERYONE I know.  

Eventually we found a doctor who would prescribe LDN.  My husband started it first for his own autoimmune disorders which he was born with (but that is a whole other story on Un-diagnosed Celiac Disease).  He experienced the most amazing improvements.  Within 24 hours of his first dose all of his body inflammation (had been around for 30+ years) was gone. 

Knowing that I had a reverse T3 issue and an autoimmune disease I started on LDN.  I started at 1.5 mg per day and increased it by .5 mg per week until I reached 4.5 mg.  I actually stoped at 3.0 mg for a month or so and then decided to go up to the 4.5 mg.  

Those things (the dessicated thyroid hormone and LDN) both helped A LOT!  I was definitely closer to 75% better at this point.  I had more energy, more feelings and just an overall more positive outlook on life.  

However, we did know from the multitudes of blood tests that my vitamin D levels were drastically low.  I had tried taking 50,000 IU (which is a HUGE amount) of vitamin D twice a week (by prescription) to increase my numbers.  It did not do much.  My vitamin D level barely increased, it went from say 25 to 26 over a three month period at this dose.  Oh, and I was going outside for at least 20 minutes day in the Florida sun.

 Next I changed my diet.  While researching ways to raise your vitamin D I read this article on diet: http://lewrockwell.com/miller/miller38.1.html.  I went on to research this idea and after a good month of reading everything I could about it, I switched our diets.  We went 100% organic produce, organic grass-fed   and finished meats, pasture raised poultry, and full fat dairy products.  

After 2 months on this diet, my energy increased substantially.  I also started getting more excited about things, like I did way before all of the thyroid stuff began.  At this point I would say I was at 90% better.

Today I am at about 92%.  I still have some bad days.  But those days are once every 3 weeks or so instead of every. single. day.  

My Reverse T3 ratio is still below 20 but I think it is improving.  I will know better after my next blood tests.

Oh and did I mention that now in January of 2012 I am almost 145 lbs?  Now I am just waiting for my eyebrows to grow back in, when they come back all full and healthy looking (a sign of hypothroidism is that the outer 1/3 edges of your eyebrows stop growing) I am going to let them be all bushy, at least until my husband asks me to style them!

I do wonder if I had been on dessicated thyroid instead of synthroid if my goiter would have shrunk.  I wonder if I had been on LDN before synthroid if I would have needed any thryoid meds and if my goiter would have shrunk.   However, I cannot live in the past, I cannot change what I knew then.  I made the best decision with the information I had at the time.  What I can do though, is share my story.  Share the information I have and hope that it will help others who are experiencing what I experienced.

You may have to fight to get better.   You may have to fight your body, fight your doctors, and fight the system for better treatment.  But the fight is worth it.  

I know how hard it is to fight when you are so damn tired.  I know. I have been there.  I remember saying to my husband while reading the STTM book that I just don't have the energy to fight.  I never, ever thought I would be where I am today, but I fought and here I am.  If I can do it so can you! 

I didn't have to fight all alone, which helped.  So if you can find someone to fight with you, I know it goes a long, long way.  Even if it is just that they are standing next to you while you fight.  I may not have made it without my husband helping me fight, my family flying across the country to help when I really needed it, and friends that were able to help with my toddler. So I am thankful for every bit of help I have had over the years. 

And I am so thankful for the thyroid pioneers, for Dr. Broda Barnes, Dr. Lowe, Janie Bowthorpe, Mary Shomon, and so many others.  I was 26 years old when this all started and I really thought my life was over, but now I know I have many years ahead of me and they are going to be great!

I hope my story can help you on your journey to wellness.

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Disclaimer: I am not a doctor and my story is not meant to be construed as medical advice.  It is merely my experience.  Please see your health care practitioner for medical needs.

The content of this post is provided for general informational purposes only and is not intended as, or should it be considered a substitute for, professional medical advice.  Do not use the information for diagnosing or treating any medical or health condition.  If you have or suspect you have a medical problem, promptly contact your professional healthcare provider.

18 comments:

craftytammie said...

my gosh what a horrible thing to go through! thanks for sharing your story!

Shannon said...

Thank you so much for sharing your story! I cried as I read it. I have been dealing with thyroid issues since I was around 14 years old. At 31, I think I have finally found the Dr that I can trust to help me. I am also Vit D deficient and getting shots right now. Isn't it amazing to feel better after years of feeling like crap?!

Sharon Pernes said...

Thanks for tellingnusmthis story and sharing all this important info. I'm glad you are doing better, 92% isn't too bad.
Being that you like research and you did become depressed I would like to recommend a book for you. It's called the feeling good hand book by DR David Burns. As you might know from Twitter, I suffer from depression and anxiety at times. This book changed my life. It really brought things into focus for me. You should defi ately look into it.

JustPam said...

Unfortunately you are not alone in dealing with doctors and trying to find one to help you. Fortunately you were able to do research and finally find a doctor willing to help you.

There is a yahoo group that you may be interested in. http://health.groups.yahoo.com/group/NaturalThyroidHormones/

They may be able to help you get to 100%.

My endocrinologist will not even talk to me about the natural thyroid. We only have one group of endocrinologists in my area so when I get motivated I am going to be searching other areas for a new one.

Lindsay said...

Thanks for sharing your story. I'm going to pass it on to a friend of mine. She found out last year that she had thyroid cancer. She's had the surgery and the radioactive isotope, but is still trying to get her medications right so she feels back to normal. I think she'd be interested in some of the links and books you have posted. I have to say once this happened to her and I started talking about it more, I found I know more people that have thyroid issues. I didn't realize it was so common. I'm glad you are doing better and I hope you are able to get back to 100% soon.

Kasey said...

Thank you for sharing this. The fight you had to go through reminds me of the fighting we did trying to find a doctor who would actually listen to me rather than diagnose my excruciating lower back/hip pain as "depression." 4 years into my fight, I must say I had a little fun calling all the doubters and informing them I had a BROKEN BACK (two vertebrae had fractured in three places and thus healed poorly from no treatment and are now fused). It's sad that patients sometimes get brushed aside like this, but I am so glad to see you fought for yourself and have things figured out. Take it day by day, and know your blog readers love you!

Melody said...

I'm so glad you shared your story. I know from experience how crappy a low thyroid can make you feel. I have to say that your story makes me realize just how lucky I've been in my thyroid treatment. I had thyroid cancer with a removal nearly 20 years ago and the resultant treatments. I don't remember the surgery being overly painful but I also realize just how lucky I am to have had the endocrinologist I've had for most of the last 15 years. She left Kaiser and when I left Kaiser I found her again. Now she's left private practice and the one visit I had with another endocrinologist has left me with the impression I'd just as soon never see another one. I know it's going to be a real battle to find another endocrinologist that I trust and like. Thankfully the followup treatments for thyroid cancer have improved greatly over the years. Good luck on your battle to health. Hypothyroid levels really keep you feeling like crap!

Anonymous said...

Thank-you, for this amazing insight into your life. I feel it has helped me already to take courage and keep fighting my own battle which is quite different to your disease. I very much appreciate your story indeed and the light you have shed is invaluable. Keep up the great work:) toni-anne grace@amnet(dot)net(dot)au

Heather A said...

The sharing of your specific story with all the details you provided really is a gift. Thank you for that.

I'm just entering the world of whacky thyroid after having breast cancer and radiation of the lymph nodes of my neck that, I think, effected my thyroid. Already I've run into resistance from my family doctor despite the fact that my standard thyroid test (which I've learned is not so reliable) is "borderline", which is "A-okay" for him.

To still fight the battle to get quality and knowledgeable medical care despite your fatigue is really commendable. With post cancer treatment fatigue which may also be lymph problems fatigue, I know how hard it is to muster up the energy to fight the medical system.

Thanks again for sharing your story. I'm going to post a link to it from my blog.

I'm so glad that your quality of life has improved so much. I hope it continues.

Camille said...

Wow, I needed to read this today!

I too, have Hashimotos, and was diagnosed with it about 4 years ago. I struggled through 3 years of complete and total exhaustion before that, and several misdiagnosis'. This year after my 3rd son was born has been difficult because I haven't been able to stabilize my darn thyroid!

I still laugh every time I go to the endo and I'm the youngest person there by about 30 years. OH to have a functional thyroid, can you even imagine? :-)

Hang in there!! I'm cheering for you!

The Hojnackes said...

Do you think the vitamin D deficiency has anything to do with the thyroid issues? I have low TSH and my vitamin D is at 16. It makes me wonder if they are related.

Mommo said...

I am having my thyroid removed on Monday......can't say I loved looking at the photos....glad to know how difficult it is going to be though. I am going to check into some of the books you recommended. Thanks for your story.

The Hojnackes said...

Mommo, I had surgery on my parathyroid (which is in the same place) 10 years ago. The scar is barely noticeable now. I wore turtlenecks constantly for the first few years to cover it (even in the summer). It is ugly at first, but should get better with time.

quiltingcats said...

Another excellent website is www.wilsonssyndrome.com. It addresses low body temperature and "classic low thyroid-like symptoms." My family doctor knew all about it because of another patient and put me on compounded T3, following Wilson's protocol, to address my symptoms.

It was amazing to me when I felt the difference between living life with a normal body temperature as compared to living life with a low body temperature. In my opinion, health care professionals should not be telling us that a low body temperature is normal because you can feel so much better with a normal body temperature.

Also check out the Leptin Diet
Book.

Jen said...

Thanks so much for sharing. I too had to have my thyroid removed - mine was due to a cancerous mass. I'm so sorry to hear you struggled so much. I do appreciate the information you have passed along. I will be checking it out. After 8 years, I still have some issues but am looking forward to finding some answers. Thanks again for posting.

AFHMOM said...

Wow. Today I purchased some PUL fabric (8yds for $19.99!) and Googled for Tutorials. I found your great tutorials from 2011 or earlier. This I browsed your site and read your Thyroid story. Wow! I too was diagnosed with Hashimoto's during a pregnancy 23 years ago. When that baby was 2yrs old, I went in for a recheck. Two months later I was diagnosed with Thyroid cancer, through scan, biopsy. My whole thyroid was removed, Radioactive Iodine horse-sized pills, then years of total body scans--the last being 2003 and clear. Still having thyroid problems though. Dr. in Dec told me that my generic Levothyroxin needed to be changed to same dose Brand name Synthroid ($4/month versus $90/month btw). I found a Naturopathic Doc (my first) and she is very knowledgeable. I take extra T3 now. Still not great. I thank you for the info on book names etc.
However. Did you live in Nevada or Utah during the 50's?
Thyroid cancer is prevalent among "down winders". There is a small government fund ($50,000) that is running out soon, so if you think you may be eligible contact me and I will try to find the info to send on.
debbieterry@gmail.com

ralphsam120 said...

I am also diagnosed with hyperthyroid and after reading your post I am much more afraid from this disease.
Your story inspires me to gain more info about this disease. After searching a lot I have found an article which provides some remedies to treat this disease naturally here in below link.
http://www.ayushveda.com/magazine/key-remedies-for-treating-hyperthyroidism/
I want to know, Is their not a way to treat this disease without operation.I mean through a natural way like as said in shared link.

Anonymous said...

Nice decollete

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