Saturday, May 10, 2014

Thyroid disease, weight loss, and weight maintenance- my story and recovery

Fall 1996
I've been thrilled to see all the great resources in Sean Croxton, from Underground Wellness  Thyroid Sessions.  It warms my heart that now in 2014 there are much better resources out there for diagnosing, treating, and long term recovery for thyroid diseases.

Recovery is possible, if you seek the treatment and docs that are right for your disease. This was the tricky part for me.

 I had thyroid disease in 1996-1997. It's been in remission since late 1997. I've never really told my story, but I should, so you can be aware for yourself or friends and family who may have or develop thyroid disease.

Here are some answers to frequently asked questions.

1. How did you know you had thyroid disease? 
 I had symptoms like a really puffy face, couldn't lose weight, brittle hair, slept all the time and never felt rested, a goiter, foggy brain, joint pain. My cheeks felt like stiff, waxy, plastic implants had been inserted.

I was age 31 at the time and I felt like I was about 81. I stumbled when I walked. I fell down often. I stopped practicing my hobby, photography. To say the least, I was not myself.

2. Did you have a goiter?
Yes, I did have a goiter for about 6 months. I was getting my hair cut and the stylist wrapped a towel around my neck. I could feel a butterfly shaped swelling. I'm a Laboratory Technologist (CLS, MT (ASCP). I know what that means. I've studied this stuff and done all kinds of thyroid related lab testing in the lab as my career.   Thyroid disease!  I was in shock. But at least it explained  why I was not feeling well.

3. Did you get treated right away?
NO! Sadly, for 6 months or so, I went undiagnosed. Even with a big goiter, my doctor told me it was transient and would "go away on it's own".  Good news: I fired that doctor. Holy Heck. I was having nightmares because I felt like I was being strangled by my thyroid gland. I got lost in Costco, couldn't remember where I parked my car and I fell down 2 times by tripping. I told my husband at the time "good night" it was early morning. I fell asleep at the end of dinner at 7am most nights. I woke up thinking it was still right before bed on the night before. There was no end. I never could sleep and rest. It was like living a nightmare.

Spring 1997
4. How did you get the right treatment?
 A doctor that I worked for in the lab got tired of looking at my goiter was concerned. I saw him as a patient and he ordered thyroid antibody lab tests. I did not have to wait long since I worked in the lab where the testing was performed. I knew it would be bad news when my co-workers refused to talk to me and told me to go see the lab director first. ( In California at the time, a doctor must release your lab results to you directly) That afternoon, I found out I had 1:80 anti-microsomal antibodies. My lab doctor wrote a letter to my regular doctor and said "Now they will HAVE to treat you".

5. Did you get treated, finally? 
NO, not right away. My regular doctor, rat bastard looked at me disapprovingly and reluctantly referred to me to Dr. No Bedside Endocrinologist. Who apparently hated obese women and told me... well you will get better on your own. PLEASE. Duuuuude. I have anti-microsomal  antibodies. It's transient, he said. Well, my dad had thyroid disease, my grandmother had thyroid cancer, my great grandmother had a massive goiter. How f-ing hard is it? "Let's watch your TSH and wait a few months" said Dr BAD Bedside manner. I cried. He hated me more.

I called my one of my best friends, an immunology PhD. She told me she would go with me to my next doctor's appointment and would advocate on my behalf give Dr. BAD Bedside manner holy hell. I thanked her.

It took a full year for me to finally feel better again. A full year to be 100%. I felt somewhat better after 3-6 moths of meds.

6. What were your lab results?:  My TSH went from 4.2, to 6.3, to 9.62. Dr. BAD Bedside manner called me and said "I've got bad news, you've got thyroid disease and you'll need to take replacement meds for the rest of my life. I thanked him and asked him what took him so long to treat me? And, that I would switch my care over to my new internist who was a whiz at balancing thyroid disease and did not hate on obese women.  My co-workers cheered for me and they all gave me the beating the  auto-immune disease high five. I became the positive control on the anti-microsomal antibody assay that year! Awesome, kind of...

7. What meds do you take?
I've always been on the same dose:   0.1 mg (100 micrograms) of Levothyroxin . I did change manufacturers without any ill effects. It's hard for me to believe that I've yo-yo dieted, lost 60 pounds, gotten pregnant, had a c-section, gained 30 pounds, lost 30 pounds, ate the SAD diet and lots of processed foods, gained 70 pounds, lost 70 pounds, switched to a Paleo-ish template, gotten control over emotional/binge eating, maintained my weight loss for over 2 years, and went through menopause on the same dose of thyroid meds.  Amazing!  Perhaps I have some thyroid function/tissue left? Who knows?

8. How do you take your meds?
Pill reminder & Keurig

I take my meds first thing in the morning. I use a pill reminder. If I somehow forget to take my meds in the morning, I'll take them at night.  I wait at least a half an hour before I eat, sometimes longer. I only take vitamins, calcium, magnesium at lunch or after so I can get a consistent absorption of thyroid meds first.  The good doc cleared me to take my thyroid meds at night instead on an empty stomach, but I tend to fall asleep before taking them, so morning works better.

9. How often do you get your blood drawn and what's your TSH/Free T4?

I get drawn, minimum 1 time per year. Sometimes 2 times. My TSH ranges from 0.8-2.2. If I'm over 3.0, I feel pretty bad. My free T4 has been normal, yay!

10. What foods can't you eat/drink post thyroid disease?  Off limits: Alcohol- I cannot process any alcohol what so ever. Also way off limits: Wheat, Dairy, and nuts. Wheat causes severe belly pain and emotional eating tendencies. All grains do. Grain = pain. Dairy causes a lot of sinus swelling and mucus production. I'm even ghee sensitive. (sigh!) Mucus like a waterfall and painful, cystic acne. (Moooo,- no dairy for me) Nuts contribute to migraines and emotional eating. 

Nobody told me this post diagnosis. Now, I think the link between auto-immune thyroid disease and grains/dairy/nuts is more established. I hope so.  I did not have to do a full auto-immune protocol elimination diet, but I will if I feel that things are getting worse for any reason.

Please, share my story with friends and family who may be getting diagnosed (or feel like they are misdiagnosed). I'd go to a functional medicine doc in a heart beat if my good doc cannot or will not help me with my meds. I would have been much better off had I gone this route.  Recovery is possible!

April 2014

What worked:
1. Getting the right medical advocates (hint it may not be your family!)
2. Getting the right doctor.
3. Getting the right meds
4. Getting the right diet

What didn't work:
1. Relying on only myself to see the doc when I was so sick.
2. Going back to the doctors who refused to treat me and refused to be respectful when I was obese.
3. Not getting on meds (I sure did try!)
4. Continuing to eat Grains- especially Wheat, dairy, and nuts. Thinking I HAD to live with major gas, bloating, sinus problems, cystic acne, and migraines. Not so for me.

 Anybody else have a hard time getting diagnosed with an auto-immune disease? Tricky stuff. Hang in there!


  1. Very good informational post, I added it to my collection.

    1. Thanks, Vickie! It's so, so common. I'm glad that sub-hypothyroid values are finally getting looked at (TSH between 3-5 ish). I step up pretty quick to advocate for my daughter when she is sick or needs treatment. We'll see if she can escape the family thyroid curse. Who knows...

  2. Just a little thing...0.1 mg is 100 have a typo.

    1. Lucky Mama- thanks for catching my typo.. LOL.

  3. I was diagnosed with Hypothyroid Disease in 2003 and was put on Levothyroxine .125 mcg's, and continued to feel ok for the next 7 years ( After A LOT of research it turns out that major trama in life can trigger thyroid disease and my parents had gotten divorced the previous year after my dad had come out of the closet and left my mom for another man).
    After my second child (c-section) I started to withdrawal myself from friends and family and even the simplest tasks seemed overwhelming. I thought that it was my hormones trying to level out from the pregnancy and then continueing to level off after stopping breast feeding 6 months later. At the beginning of this year I decided that I needed to get my thyroid checked to make sure it was ok (had LOTS of other symptoms: hair loss, memory loss, ultra dry skin, always tired, super weepy, etc.) turns out that my thyroid pill was too high (I had been changed to .175 mcg's about a year before), and so he lowered it. I asked him if there was anything else that I could do to help out my thyroid like a special diet or anything and he said "NO" and that the synthetic hormone was all I needed.
    I decided to get a second opinion and went to a homeopathic thyroid specialist which consisted of a Dr and to Nurse practitioners. They checked my TSH and some other blood work and it turned out that in February of 2014 they diagnosed me with Autoimmune Hashimoto's Thyroid Disease. They switched me to Armour Thyroid (desecrated hormone from pigs, not synthetic), and the difference has been night and day. After doing more research I have found that a gluten free diet will help out loads and so I have been trying to make the transition. I am discovering that food has so much to with all the little pains of our bodies and although it will take a while to break me of some of the bad habits that I have, it is worth it for my health.
    Thank you for sharing your story! It is so nice to hear others talk about their struggles with this annoying disease!

    1. Shrinking Carrie, thanks for sharing your story. I would like to think DX of Hashimoto's is getting better. I know my doc is on me a lot that if my dose is too high, I could wind up with bone loss and heart problems. Glad you got a second opinion. I have two close friends (husband and wife) that both take Armour and do so much better. Glad you are finding gluten free to be a help. I listen to Dr. Amy Myer's podcast. I've learned a lot from her and I don't feel so bad when I have to be strict about dairy and nuts. She said many of her patients have big reactions to dairy and nuts (in addition to gluten). Good luck and good for you for experimenting with what works.

  4. Thank you for sharing your story. It saddens me to hear that certain doctors will dismiss their patients' symptoms so readily. I am glad that everything worked out for the better.

    1. Almond, thanks! I'll be going to a functional medicine doc if my regular doc does not address things in the future.

  5. Wow I never knew there was such a thing. Glad to hear though you are doing better.

    1. Thanks Angel Blue. I do feel much better !

  6. Great information here Karen, I did a special mention and post on our blog - which linked direct to your's and Sean's blog. It's so important to share experiences, it can help others.

    All the best Jan

    1. Thanks. , Jan. I was watching some real time data and saw a lot coming in from England. Thanks for sharing.

  7. This was very informative. I was not familiar with Thyroid disease other than the term itself. Thank you for sharing your story!

    1. Thanks Random Girl. It's common to get a delayed or miss diagnosis Glad you stopped by!!!