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Learn from my journey. Do you have thyroid disease?

Editor's Note: This is a special guest post from Maggie Hadleigh-West. Her byline is at the end of the article

21 is no fun.

I am barely 5"3", my hair is thin and straight, I have almost no hair on the outer thirds of my eyebrows.  I'm prone to being slightly overweight.  My palms are yellow, my fifth digit is shorter than it should be and tips of my fingers are purple-ish.  These are classic signs of an illness. 

During my childhood, I was constantly sick with upper respiratory and bladder infections and was on antibiotics.  At 21 I became extremely symptomatic and began desperately going from doctor to doctor trying to figure out what was wrong with me.  I described the same symptoms to all of them:  I constantly get sick, my body temperature is low, my blood pressure is low, I am exhausted all the time, I can't sleep, I'm developing allergies to foods, medication and the environment, my brain is not working right, my muscles ache, I have carpal tunnel, bursitis, plantar fasciitis, ad infinitum. 

What has it taken you 32 years to do?

Almost no one listened to me.  If I was tested for thyroid disease over the years, it was always the TSH test, which misses 85% of people.  Because doctors rely on the faulty TSH test, they often totally miss the signs and symptoms that doctors in the 1940's used to know well.  That oversight stopped me, and millions of people worldwide, from being diagnosed with thyroid disease until something extreme happened.  At 32 my thyroid had gone from underactive to overactive and I was on the precipice of what's called a “thyroid storm”, when your metabolism is running so quickly that you can have a heart attack, a stroke, or even die.

Graves Disease (Hyperthyroidism)

Today, I understand that I had undiagnosed hypothyroidism until I was finally diagnosed with Graves Disease, a form of autoimmune hyperthyroidism.  After a lot of research, I made the decision to follow the advice of an Endocrinologist and drink radioactive iodine, which would localize in my thyroid and would slowly kill the gland so I wouldn't go into a dangerous thyroid storm.  Subsequently, I would become reliant on medication for the thyroid hormone that I needed in every cell, organ and bone in my body. 

The medicine is worse than the disease.

As my thyroid function failed (as was expected), I was prescribed the gold standard of medication for hypothyroidism: Levothyroixine (also known as Synthroid. Levoxyl, Levothroid, Unithroid, Tirosint, Levo-T).  The levothyroxine medication never worked properly for me and as a result, I was undertreated for the next 20 years, which now explains why I continued to be sick.  This gets technical. The medication failed because it is only T4 and in a healthy body T4 is converted to T3, which is the active hormone the body needs.  Almost anyone with the autoimmune versions of thyroid disease, Hashimotos Thyroiditis (hypo) or Graves Disease (hyper) cannot make that conversion to T3 so the medication rarely treats properly.  

Another 20 years go by and finally… some answers

At 53, exhausted, confused and utterly hopeless, I moved from New York City back to New Orleans, and on a recommendation went to see a doctor that I knew nothing about. Dr. Chuck Mary was the beneficiary of his father’s teaching (who had been mentored by Dr. Broda Barnes, a thyroid expert who died in the 1980's).  One day in Dr. Chuck’s office he showed me the medical book that he used, which listed symptoms I'd had since childhood, including: bone retardation (scoliosis), anxiety, hoarseness, swollen tongue, lack of resistance to upper respiratory infections, etc.  Seeing my symptoms, which I had as a child, so clearly and definitively reflected back to me in a medical book, enraged me.

Finally, the fog clears.

Sadly most doctors no longer understand this illness or recognize the signs or the symptoms.  That medical book was the motivating factor for me to make a movie about thyroid disease. The book was also a gift­.  It granted me the ability to do what most doctors can't do today–diagnose an obviously hypothyroid patient.

There is absolutely NOTHING about what I look like, what my symptoms were, and are, that is not CLASSIC hypothyroidism in childhood, flung into hyperthyroidism as an adult and back to hypothyroidism after ablating my thyroid and being undertreated by the wrong medication.  Now I take natural desiccated thyroid, which is comprised of T4 and T3 and my body much prefers it.

Today. For others.

Today when I see someone who looks like they have thyroid disease, I go talk to them and suggest that they test themselves, so they can find a doctor who can TELL THEM what's wrong, rather than waiting decades for doctors to catch up with what medicine used to know.

Maggie Hadleigh-West is the Director of the film, Sick to Death! , is a social justice and health advocate.  Her work can be seen at and

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This is an interesting

This is an interesting article. I know that thyroid disease is complex and very difficult to manage for the people who have it. 
Luckily, I didn’t experience these symptoms with Thyroid Cancer. Most people who have thyroid cancer have normal lab work and don’t have symptoms like the ones described. 
When I had my thyroid removed and ablated  I started taking  levothyrxine and I experience more tiredness then in the past.  That could be because of age too :).  But I'm in my 30's..  My thyroid cancer doesn’t seem to match up with other diseases of the thyroid. 

No one person is the same. I

No one person is the same. I know. I may do better on synthroid, others on levothyroxine or dessicated thyroid hormones.  My endocrinologist tests for Free: T3, T4 and TSH.

Unfortunately, the whole body IS affected by the thyroid gland, which does cause a lot of symptoms.  I had my hyperactive thyroid ablated with nuclear medicine radioactive iodine in my 20s and have been hypo since.  My meds have been adjusted throughout my life.  I never had all those issues that Maggie had as a kid, as she stated, never had respiratory or urinary issues.  I do feel my heart palpitations are exacerbated when thyroid levels are high. (TSH is then low). I also know I am low when I’m cold and feel really tired and have palpitations.  I do better on synthroid than the generic, but insurance doesn’t pay for it because they want people to use the generic. So, I have a Doctor appeal the policy.  And then insurance pays at a higher Tier, but it’s a lot higher priced than generic. But that’s the same with other brand vs generic meds.

Dessicated thyroid hormone is from animals, pigs.. I’ve never tried it, but it might be worth asking my doctor if I have any more med changes.  I’m not sure if it’s as predictable as a dose amount as a brand name synthroid.  Generic meds like levothyroxine can vary up to 75% of the same dose.  Plus if you change manufacturers the dose can change as well.  So a 100mcg synthroid might be 75mcg or 80 or 90.  When my doses need to be change they are minimally adjusted.  EX:  100mcg too low, then next time, 125, then 137.5.. so you can see the adjustments are minor… so taking a generic can be like adjusting the dose.  That is why it is so difficult.

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