hypothyroidism

Birth Control is Bad News for Thyroid and Liver

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birth control thyroid

A lot of things baffle me about the medical industry’s approach to birth control, but the one thing I’ve struggled with the most has to do with the thyroid. For the life of me, I couldn’t understand how any doctor could prescribe The Pill to a patient and not be concerned about the affect it was having on the young woman’s thyroid.

The most frequent side effects experienced by women on birth control precisely mirror the symptoms of hypothyroidism: weight gain, water retention, constipation, irregular spotting, decreased libido, high cholesterol…

I believed one would have to be willfully blind not to see the connection. Then, I learned about another type of blindness in Daniel Kahneman’s book, Thinking, Fast and Slow.

Blind to Hypothyroidism

Kahneman won a Nobel Prize for his seminal work in behavioral economics. In the book, he describes numerous ways our minds process information and the, sometimes illogical, ways we respond to particular situations. A couple of the cognitive processes he details could help explain why doctors tend to overlook birth control’s affect on the thyroid.

First, what the author calls “a general ‘law of least effort’ [that] applies to cognitive as well as physical exertion.’ He says we have a laziness built into our nature, and once we learn a skill, we utilize fewer regions of the brain and consume less energy when we perform the task. Consequently, we are less engaged (Page 35).

The second factor has to do with attention. Kahneman explains, “When waiting for a relative at a busy train station, for example, you can set yourself at will to look for a white-haired woman or a bearded man, and thereby increase the likelihood of detecting your relative from a distance.” However, by focusing your attention on spotting this relative, you will miss other details – and not just the mundane.

To demonstrate just how focused we can become on a task, he cites the Invisible Gorilla study, which achieved notoriety beyond the realms of behavioral science because it seems so impossibly absurd:

“[The researchers] constructed a short film of two teams passing basketballs, one team wearing white shirts, the other wearing black. The viewers of the film were instructed to count the number of passes made by the white team, ignoring the black players. This task is difficult and completely absorbing. Halfway through the video, a woman wearing a gorilla suit appears, crosses the court, thumps her chest, and moves on. The gorilla is in view for 9 seconds. Many thousands of people have seen the video, and about half of them do not notice anything unusual. It is the counting task – and especially the instruction to ignore one of the teams – that causes the blindness. No one who watches the video without the task would miss the gorilla.” (Pages 23-24)

Likewise, if a new patient, who hadn’t recently started on The Pill, presented the same symptoms, no doctor would miss the warning signs of a hypoactive thyroid.

Focus on You

Doctors, through their training and experience, are intimately familiar with the side effects of hormonal birth control. So when a patient develops common complications soon after starting The Pill, skilled doctors believe it to be normal. They may suggest the symptoms will go away with time or may choose to prescribe a different formulation. Since they already know the source of the symptoms, the solution seems reasonable. It would be unnatural for them to consider the onset of an iatrogenic illness. After all, who keeps looking for the TV remote once they’ve found it?

This compartmentalization bias is precisely why a woman should trust her body more than the doctor when it comes to birth control. It’s not a coincidence that many women’s side effects resemble hypothyroidism (such as Hashimoto’s Tyroiditis), nor is it a coincidence that so many women develop a hyperactive thyroid (such as Grave’s Disease) soon after they stop The Pill.

Thyroid Under Attack

A normally functioning thyroid’s primary role is to produce two hormones known as T3 and T4. Produced in much smaller quantities, T3 is the active hormone, which regulates our energy, metabolism, and internal ‘thermostat.’ T4 could be thought of as T3 in waiting. It is produced in larger quantities so that can be delivered throughout the body, where it will be converted to T3.

Each cell in the body contains receptors for the thyroid hormones. These receptors remove a single iodine molecule from the T4, transforming the T4 into active T3. Thanks to this little miracle of chemistry repeating itself in every system of our body, the thyroid affects nearly every bodily function. Consequently, so does anything that disturbs that delicate balance.

Hormonal birth control creates myriad problems for the thyroid, beginning with the depletion of vital nutrients such as magnesium, selenium, zinc, and essential B Vitamins, like folate. The thyroid needs these important nutrients, especially zinc and selenium, to convert T4 to T3. Unfortunately, no amount of supplements will help your body overcome this obstacle.

While depleting nutrients, birth control also elevates production of Thyroid Binding Globulin (TBG). This protein binds with thyroid hormones to carry them through the blood stream, but renders them unable to attach to cell receptors. Consequently, the body may try to compensate by overproducing T3 and T4, without actually increasing hormone activity. This could explain why some women develop Grave’s Disease after stopping The Pill. Their TBG levels return to normal, but their body continues overproducing T3 and T4.

The Path to Long-term Fatigue

Women taking hormonal contraceptives have also been shown to have a three-fold increase in C-Reactive Protein (CRP), a widely recognized inflammation marker. The liver kicks into overdrive producing CRP in response to the inflammation associated with the birth control. This inflammation serves as a double-whammy to the already struggling tandem of the thyroid and liver.

First, the inflammation makes your cell walls less responsive to all hormones. Second, it disturbs the process of deiodination, leading to the overproduction of another inactive hormone known as Reverse T3 (RT3). As the name suggests, RT3 is the mirror image of T3, meaning the iodine molecule has been removed from the opposite side of the hormone.

RT3 competes with T3 for the same receptors. Since it is inactive, too much RT3 will leave you feeling lethargic. Your body responds by producing more cortisol in an attempt to boost your energy. If this continues for too long, it could lead to adrenal suppression, and long-term fatigue.

Weighing on the Liver

So, what causes this inflammation in the first place? As the central organ in the metabolic process, the liver produces proteins, breaking down fat and hormones to generate energy. When we overload the body with an unnatural flood of factory-produced, artificial hormones, the liver becomes sluggish and inefficient. This sets off a toxic cascade of side effects that leads to inflammation, and could ultimately contribute to chronic illnesses such as heart disease, cancer, and autoimmune disease.

The National Institutes of Health were concerned about hormonal birth control’s affect of the endocrine system from the very early days. When Dr. Philip Corfman, the Director of the Center for Population Research, testified at the Nelson Pill Hearings in 1970 on behalf of the NIH, he warned that The Pill decreased the liver’s ability to change and dispose of certain chemicals, even decreasing its ability to excrete bile.

Their studies from the 1960’s showed that up to 40% of women on oral contraceptives experienced some changes in thyroid function. They made the connection that this had also contributed to changes in adrenal gland function, citing increased cortisol levels. Reading from the NIH report he helped author, Dr. Corfman said:

“Although it is not yet possible to draw definite conclusions about their effect on the health of women and infants, the use of these agents warrants close observation and surveillance. Effects of special concern include alterations in carbohydrate metabolism, the character and distribution of lipids, liver function, protein metabolism, and the development of hypertension as well as alterations of endocrine function.”

Congress followed up on the hearings with a special report issued in 1978. Beyond concerns addressed in the original hearings, the new Congressional Report discussed more hepatic complications associated with The Pill, including the ‘greatly increased risk’ of developing an otherwise rare form of benign liver tumor known as hepatocellular adenoma (HCA). (Page 36) Studies at that time showed that women who had taken The Pill for eight years or more suffered a 500-fold increased risk of developing HCA, with 4% of those becoming malignant.

Good News First

The good news is that many of the side effects of hormonal birth control are reversible, if you stop taking them soon enough. Not every person who experiences symptoms of a hypoactive thyroid will develop Hashimoto’s Thyroiditis. While environmental factors are pivotal in triggering the development of this chronic disease, you must also be genetically predisposed in order to be susceptible to Hashimoto’s or any other autoimmune disease.

The bad news is that a LOT of people are genetically predisposed to Hashimoto’s Thyroiditis. In fact, it is considered the most common autoimmune disease, at 46 cases per 1,000. An estimated 20 million Americans have some sort of thyroid disease, and Hashimoto’s Thyroiditis makes up about 90% of those with hypoactive thyroids.

Don’t ignore the 800-pound gorilla in the room. Please think twice about the potential complications before starting any form of hormonal contraceptive, especially if Hashimoto’s Thyroiditis, Grave’s Disease, or any other autoimmune disease have made their way into your family’s history.

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Longstanding Mitochondrial Malnutrition in a Young Male Athlete

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Male athlete with mitochondrial malnutrition

My health issues started rearing their head in ninth grade, and given the vitiligo of my mother and MS (stabilized) of my father, perhaps it should not have been much of a surprise. I had mono in middle school, and then after getting a bad virus at the start of freshman year, my health deteriorated rather quickly.

Over the course of the first few years of high school, I was diagnosed with immunoglobulin deficiencies, gastritis induced anemia that was often recurrent, IBS, elevated blood sugar, insomnia, and hypothyroidism. I also developed hand tremors and was told I had SIBO. I was a student athlete and was often exercising over eight hours a week at the time. My diet in middle school represented the Standard American Diet, but after my health issues started, I ate a diet that loosely resembled the paleo diet without much benefit.

Entering college, doctors convinced me that my issues were due to malnutrition from undereating. I was encouraged to eat more and so I did. Over the next two years, I followed an unrestricted diet with a mix of junk and traditional health food. I went from 130 to 190lbs, a 60 pound weight gain. My stomach issues got better, but everything else remained the same, except I started experiencing anxiety and exhaustion. The doctors were right, but their advice was wrong. I wasn’t malnourished from a lack of food, but from a lack of the micronutrients that allow the mitochondria to convert food into energy. Looking back, it is no wonder I had no energy.

Just recently, I discovered the articles about thiamine on this website. It all began to make sense. Thiamine is a required mitochondrial nutrient, one that I was likely missing. I began thiamine and magnesium. I had previously tried magnesium, but I was intolerant to it. Since taking the duo for two weeks, I have started to notice a bit more energy, much better warmth in my extremities, and more stable blood sugar. However, that was preceded by major nausea, freezing low body temps, and worse blood sugar instability than ever suggesting a thiamine paradox at work. Here’s to hoping that this treatment works wonders going forward.

Health History

  • Current Age: 20
  • Height: 6ft
  • Gender: Male
  • Weight and body fat: 190lbs 15% Body fat

Family History

  • Mom with vitiligo
  • Dad with stabilized MS

Middle School

  • Had mono at one point, always generally had minor fatigue
  • Junk food diet

Ninth Grade

  • Got terrible stomach virus at start of year
  • Developed hand tremor
  • Found out I was anemic with collagenous gastritis. (I suspect it was actually iron overload aka Morley Robbins theory.)
  • Treated with Prilosec and iron supplements
  • Ate relatively low carb
  • Lots of tennis

Tenth Grade

  • Developed IBS
  • Discovered IGG and IGA deficiency and low vitamin D
  • Got SIBO diagnosis
  • Restricted diet even more by eliminating gluten and dairy
  • Lots of tennis and track

Eleventh Grade

  • Diagnosed hypothyroid
  • Took synthroid without success
  • Lots of tennis and track

Twelfth Grade

  • Unrestricted diet as doctors convinced me that undereating was the cause of my issues. I went from 130lbs to 160lbs.
  • Lots of tennis, track, and weightlifting

Freshman Year of College

  • Ate paleo style to drop weight, dropped to 150lbs.
  • Main issues were insomnia, chronic dry mouth, cold hands and feet, GERD, bloating, anxiety

Summer Before Sophomore Year Through End of Sophomore Year

  • Started eating a lot again, unrestricted, and went up to 175lbs over the course of a year with lots of heavy lifting
  • Fasting blood sugar of 99 and then 104
  • Same symptoms as freshman year
  • Tried things like megadosing zinc, megadosing vitamin D without success

Junior Year Through March 2021

  • Same symptoms as freshman year, but slightly improved due to nutrient density
  • Got shingles and recovered
  • Ate lots of eggs, whole milk, liver, oysters, ground beef, chocolate, liver, potatoes, rice, bagels, butter — Ray Peat style
  • Felt a bit better and warmer, but exhaustion became a symptom
  • Had negative reactions to magnesium supplements despite low RBC
  • I was trying to implement root cause protocol (Morley Robbins) after discovering my ceruloplasmin was low
  • Donated blood per Morley Robbins advice. Of all the stuff I have done, this provided the most benefit to me in terms of improved thyroid function and general sense of wellbeing, but still had tons of issues

Present

  • Discovered thiamine and this website and began thiamine supplementation. First with thiamine mononitrate March 20, 21. Suddenly, I had energy.
  • Switched to 250 mg Benfotiamine with 120 mg magnesium on March 24th.
  • Switched again to 100 mg Thiamax with 125 mg magnesium on March 25th.

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Why Fatigue Matters in Thyroid Disease

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thyroid fatigue

The notion that unremitting fatigue is a core clinical symptom is difficult for many physicians and patients to reconcile with its ubiquitous nature in illness. Here is yet another example of the importance of recognizing fatigue and the constellation of other clinical signs that manifest concurrently in thyroid disease. Here we see that fatigue represents a loss of mitochondrial function that, if left untreated, has some subtle and not so subtle effects on central nervous system functioning.

Some Background: Fatigue and the Mitochondrial Connection

Fatigue is one of the most common signs of mitochondrial dysfunction or deficit. Mitochondria, the energy factories within our cells, produce the ATP or cellular energy, that our bodies require to function. This process is called oxidative metabolism. As Dr. Lonsdale wrote about in How can Something as Simple as Thiamine Cause So Many Problems, consider each mitochondrion as a mini, combustion engine.

 Fuel + Oxygen + Catalyst = Energy

 Each of our one hundred trillion body/brain cells is kept alive and functioning because of this reaction. It all takes place in micro “fireplaces” known as mitochondria. Oxygen combines with fuel (food) to cause burning or the combustion – think fuel combustion engine. We need fuel, or gasoline, to burn and spark plugs to ignite in order for the engines to run.

In our body/brain cells it is called oxidation. The catalysts are the naturally occurring chemicals we call vitamins (vital to life). Like a spark plug, they “ignite” the food (fuel). Absence of ANY of the three components spells death.

Antioxidants like vitamin C protect us from the predictable “sparks” (as a normal effect of combustion) known as “oxidative stress”.  Vitamin B1, is the spark plug, the catalyst for these reactions.

 

When there is dysfunction within this pathway, which is also called the OXPHOS or oxidative phosphorylation, when the engine doesn’t get the fuel it needs or the spark plugs don’t work, fatigue and other symptoms arise. Fatigue is an important clinical sign that something is amiss in our cellular combustion engines.

Mitochondria and Hypothyroidism – Beyond One Test One Drug

In chronic hypothyroidism, chronic mitochondrial deficits are clinical signs that can be recognized, if one is looking for them. They present as fatigue, and when chronic, as balance and gait disorders. Recall our discussion and videos on Hashimoto’s disease associated with walking and balance difficulties: Adverse Reactions, Hashimoto’s Thyroiditis, Gait Balance and Tremors –  those examples pointed to mitochondrial dysfunction. Here is yet another example of the importance of recognizing subtle clinical signs of mitochondrial damage.

Watch and listen for the clinical signs. How many do you have?

Notice, he speaks of the importance of proper nutrition, of reducing inflammation, and of exercise and other modalities to correct the functional deficits of hypothyroidism and mitochondrial dysfunction. Notice also, the improvement in functioning after only eight weeks of treatment.

Datis Kharrazian: Developing the Clinical Eye to Discover the Causes of Fatigue from The Institute for Functional Med on Vimeo.

If you or a loved one suffers from chronic and unremitting fatigue rule out thyroid dysfunction and its sister condition mitochondrial damage. A simple TSH test, as is commonly considered, is not sufficient to find thyroid dysfunction. A full panel must given. Once a diagnosis is reached, remember thyroid medications, though they may be necessary, are not enough to correct mitochondrial damage. Diet and nutrients must considered. Put it all together and live healthier.

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This article was published originally on Hormones Matter on November 7, 2013. 

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My Doctor Is an Expert

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medical ignorance

He knows there may be other, better and much more likely explanations for my hair loss, my low body temperature, my inability to lose weight, low blood pressure, skin problems, mood swings, low T3/high rT3, iodine deficiency, brittle nails, memory loss, migraines, excessive ear wax, fatigue, carpal tunnel, allergies, lichen sclerosis, elevated LDL, low ferritin, insomnia, DHEA deficiency, erratic cortisol, PMDD, estrogen dominance, PCOS, obesity, vision problems, vertigo, tinnitus, moles, hemorrhoids, constant nausea, menorrhagia, loss of libido, coital pain, inability to labor, long gestation, high birth weight, baby with developmental delays, kidney cysts, cervical cancer, hypoglycemia etc. etc. etc. than a malfunctioning thyroid. He knows this, because he is an expert.

Yes, he is an expert in explaining why all these clinical signs and symptoms are present – and actually normal! According to him, one single cause cannot be at the root of them all. Even if there was a single cause, the thyroid hormone deficiency that I insist I have cannot – CANNOT – be it! Not even with my significantly iodine deficient status now, always and in utero. No. That doesn’t explain a thing.

“Is there anything you DON’T attribute to iodine deficiency???!” he asked with little effort to hide his expertise.

He suggests I am depressed and prescribes antidepressants. Yes, of course, why didn’t I think of that? I need antidepressants.

Antidepressants will cure it all. Even, I suppose, the iodine deficiency? And antidepressants will make my body hair grow back right?  – I’ll not shave!

When I lost all my body hair, my doctor suggested this was an advantage, as many women would be delighted to be spared having to shave or wax. Yes, of course, I did a little (imaginary) happy dance around his office when he pointed out my bit of luck. In fact, I was so overcome with gratitude, I plain forgot that having hair might help me keep warm, as I am always frightfully cold.

The Brain Blind Spot – Where Hysteria Rules

I have come to the conclusion that modern medicine must be based on a theory of a Brain Blind Spot. This is the spot in your brain where your Imagined Symptoms and Inexplicable Clinical and Biochemical Signs that Will Not be Diagnosed originate. Since these symptoms affect mainly women, it is likely that the Blind Spot is governed by Hysteria – you know – Greek for Womb Related.

The Brain Blind Spot is 100% unaffected by what goes on in the body, otherwise, blood tests would pick up on it. Basically, the Brain Blind Spot produces pain, fatigue, depression and other spurious ails by itself and for no discernible reason. Luckily, there is one magic pill option; the one medicine, that can enter into the Brain Blind Spot and work its magic. It’s called an antidepressant. Antidepressants are apparently the only medication to reach the Brain Blind Spot.

TSH aka Truly She’s Hysteric

So, when the TSH (aka Truly She’s Hysteric) test falls within range, it is a sure sign that antidepressants are the path to take. Perhaps also weight loss and exercise, which are the other two tools in the expert doctor’s tool box. And these must be insisted upon even if the patient claims she “eats healthily and exercised regularly until crippled by her condition” – because we ALL know, we ALL sin. Until that last bit of chocolate is eliminated from our diets, we cannot claim to be truly healthy.

As an example, I shall again use myself. My doctor, who is an expert, suggested I eat less and exercise more. He’s right, of course. No one weighs more than their calorie intake allows. I just didn’t realize it was considered “normal” as he said, to weigh 84 kg (that’s 185 pounds for you Westerners) on a strict 1200 calorie a day diet. A diet, which is of course low GI, sugar free, organic, gluten free and generally really antisocial and – well – hysteric in the eyes of most people I know

He has two theories, which he has shared with me. First, he suggested that I was lying. This is, of course, the most plausible theory. Because if it were true that I am sustaining obesity on 1200 calories a day, it would suggest there was something awry with my metabolism, which according to the doctor there is not. However, rather crazily, I have actually kept a diary on sparkpeople.com of everything I have eaten since January 2009. I have weighed every morsel and ounce on my trusty kitchen scales and meticulously input it on the computer every day.  I can document an average daily calorie intake of 1200. I told him that. I even offered him a printout of the entire 1762 days so he could see exactly what I’d been eating. He declined, and instead, offered another expert opinion: The 84 kilo is a normal weight for someone eating 1200 calories because how much we can eat depends largely on our activity level. So he concluded I must just be really, really inactive.

I should perhaps mention here that I actually walked from my car and to the doctor’s office myself. He didn’t come to my house. I am not bed bound. I still work, have three children, a husband, a home and a pretty normal daily life

In fact, reading on the side of pretty much every packaged food product I have in my house, a “normal” woman should be able to eat 2000 calories a day. Food manufacturers, gyms and government officials that stipulate guidelines are not experts and guidelines are just guidelines. Not facts based on expertise. This is evident. Because according to their calculations, I should be half the weight I am if I were to maintain my weight on 1200 calories.

Did I mention I’m also breastfeeding?

No?

Don’t get me wrong. Although it would be nice to be slimmer, I am not vain. This is not vanity. I simply resent the assumption I meet from the broad public that I must be eating more than the 2000 calories that packaging and national guidelines propose is maintenance sustenance for me at my age, body weight and activity level. Otherwise, I would be slim. That’s the rule. You eat more than “normal” therefore you are overweight. Well, I don’t. And I am.

Luckily, my doctor now agrees. The guidelines are wrong. Calorie needs are individual, he reassures me. My inability to lose weight signifies nothing. He is, after all, the expert. Yet again, he manages to reassure me: There’s nothing abnormal in my weight versus calorie intake.

Of Dragon Tales and Beauty Products

Nor is there anything wrong with my resting pulse of 34. Or my dragon scaled legs. My son actually believed me when I claimed I had come out of a dragon’s egg. Okay, he’s nearly six years old now and has stopped believing it, but I did go through a phase of extreme temper outbursts, so with the coarse, wiry hair and the scaly legs, I couldn’t really blame him.

My doctor says I need better beauty products. You know, shampoo and moisturizers. My mum tells me she was told the same when I was a baby with scaly legs. No baby soft skin on me, so perhaps I did come from a dragon’s egg after all – a dragon that never bothered investing in some really good beauty products.

And What Do the Signs Say?

When I first presented my symptoms to my doctor, I thought the 1200 calorie a day diet, the hair loss, the pulse, the scaly legs and so much else on my list were actually “clinical signs”. My doctor says they’re not. It’s only a clinical sign if it can be verified by him, the expert.

It took me a while, actually, to realize the difference – in doctor speak – between clinical signs, biochemical signs and symptoms.

A clinical sign is one that the doctor can subjectively determine. You know, like a goiter. A biochemical sign is blood, urine, saliva, poo and other bodily excretions tested against laboratory standards, like the Truly She’s Hysteric test (Gold Standard, I hear). The symptoms are how you feel. The debilitating reality of your life that the doctor can’t see, the blood doesn’t tell and which can therefore be brushed aside, ridiculed and given spurious labels and diagnosis depending on the level of expertise of your doctor. Of course, my doctor must prioritize signs over symptoms. It is, after all, more important what he sees, than how I feel. My Brain Blind Spot is playing tricks on me again. I understand that now.

Anyway, enough about me and my symptoms. I’m just so relieved it’s not my thyroid. I hear that thing is a bitch to get right, so it’s nice my symptoms are not thyroid related and can be sorted with antidepressants.

YAY for antidepressants! Three cheers for the cure-all! Hurray for my expert doctor!

Did I mention, antidepressants cause weight gain? Maybe, he forgot about that.

This article was published originally on Hormones Matter in November 2013. 

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Fatigue, Hair Loss, Diarrhea: Just Hormones or Crohn’s Disease?

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crohn's disease diagnosis

Instead of wondering where I’d be going out for the weekend, much of my twenty-first year was spent wondering “Why is my hair thinning so much?” and “Why am I having diarrhea every day?” The last thought on my mind was a diagnosis of Crohn’s disease – an incurable inflammatory bowel disease. Now unfortunately, even amidst trying to finish college and plan a wedding, the word Crohn’s, as well as its bodily effects, are on my mind every single day.

On a quest to find true health, I became very invested in learning all I could about natural living and healing about two years ago. Ironically, around the time I began to become proactive towards my health, I noticed my health begin to deteriorate in a number of ways.

What I had assumed to be due to the normal stress of college life, a tumultuous relationship and the fast-paced life of a nanny, I began suffering from chronic fatigue, night sweats, consistently cold hands and feet, unexplained weight loss, and now chronic diarrhea to add to my laundry list of health concerns a person my age shouldn’t be having. Could my adrenals be worn down? Am I eating enough? Drinking enough water? Do I have a thyroid issue?

Hypothyroidism?

My family has a history of issues with hypothyroidism – my mother and maternal grandmother both struggle with maintaining correct hormonal balance. When my mother suggested this as a possibility to me, I figured after two years of wondering, it was time to investigate.

At a local health expo I attended last fall, I went to an informational seminar on thyroid health – all of the symptoms of poor thyroid health resonated so deeply to me. I was convinced, at this point, that this was the missing piece to my healthy body puzzle. I went out and bought an iodine supplement, but decided to hold off on taking it until I got official bloodwork done to confirm my self-diagnosis.

I cashed in on a general physical as an excuse to get some bloodwork done with my pediatrician (regrettably, I have not found a general practitioner yet). I requested a variety of tests: a full thyroid panel, a check on my adrenals, selenium, iron, vitamins, DHEA sulfate and more. Fully expecting my test results to come back saying I had poor thyroid function, much to my surprise I received a rather concerned phone call from my doctor.

Vitamin Deficient, Iron Deficient, Protein Deficient

“Your thyroid panel came back normal, but your iron is dangerously low; you are severely anemic and you need to begin on iron supplement immediately,” he said. I had not been anemic since I was four years old, but I recalled craving crushed ice when I was anemic, and I had not craved this in years. This news was shocking to me, but even more shocking was his further explanation. “You are also extremely deficient in vitamins C and D, as well as showing signs of malnutrition, such as not enough protein. Your white blood cell count is also concerning; it is what we call ‘immature,’ which shows that your body is fighting something.”

Dumbfounded, I had little clue as to how to process this information. How could I be showing signs of malnutrition? I eat all the time, and eat meat every day. The diagnosis made no sense to me. My doctor expressed concern of an irritable bowel syndrome, such as ulcerative colitis or Crohn’s disease, as his suspicion was that I was not properly absorbing the nutrients I was consuming.

The Diagnosis: Crohn’s Disease

Following a colonoscopy, an endoscopy and further bloodwork, my diagnosis was confirmed – Crohn’s disease.

My doctor explained Crohn’s to me as my immune system attacking my own digestive tract, supposedly without explanation.

Tacking the word ‘disease’ on the end of any diagnosis is devastating, to say the least, especially at the age of 21. But when a professional can’t seem to articulate a probable cause to your chronic disease, perhaps the most overwhelming sensation is confusion. With all of my efforts to live consciously and support my immune system, the news of having an autoimmune disease has been especially emotional and frustrating. While I am grateful my hormones are in balance, at least for now, my body is experiencing constant inflammation, and all I know for certain is that this is not normal.

After having a pity party for myself on the ride home from the doctor’s office, I resolved that I refuse to believe that nothing can be done for my condition, despite being told that diet will have no bearing on my inflammation. I have spent the last two years taking responsibility for my health, and Crohn’s cannot shake that philosophy.

I am currently taking steps to heal my gut through the Gut and Psychology Syndrome Diet, and while I am on an immunosuppressant steroid drug for eight weeks, I am determined to remain drug-free for this condition after this period. I am determined to achieve remission through a total transformation of my diet, and with the help and guidance of other doctors I am pursuing who have experience treating Crohn’s disease along with other autoimmune issues.

In light of this, I urge any and all who suspect that something is just “off” in their body to look seriously into the problem. And when doctors tell you what the problem is, but offer no solution, dig even deeper. Seek out a Functional Medicine Doctor; get to the root of the issue. Most importantly, take charge of your health, whether it’s your hormones, your gut, your mind, or something else. We cannot function properly as a whole when one part of us is out of balance. Keep searching for answers in your quests for true health, too, and do not let a diagnosis shake you – even if it’s Crohn’s.

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Thyroid Dysfunction With Medication or Vaccine Induced Demyelinating Diseases

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thyroid demyelination

It is always amazing to me when seemingly disparate research articles come across my desk and within an instant there is a shift in understanding. That is what happened over the last two weeks, community members from different disease groups shared research articles. From the Gardasil community: CNS Demyelination and Quadrivalent HPV Vaccination .  From our friends at Thyroid Change: Triiodothyronine Administration Ameliorates the Demyelination/Remyelination Ratio in a Non-Human Primate Model of Multiple Sclerosis by Correcting Tissue Hypothyroidism. And I connected some dots.

Thyroid and Neuromuscular Reactions to Gardasil and Lupron

Among the more common side-effects reported by Gardasil injured and a group we are just beginning to study, Lupron injured women, include decreased thyroid function, sometimes associated with Hashimoto’s, thyrotoxicosis or even thyroid cancer. Simultaneously, but frequently viewed as separate or unrelated disease processes, both groups of women report a constellation of neurological and neuromuscular symptoms, many consistent with demyelinating disorders such as multiple sclerosis (MS). Indeed, case reports of central nervous system (CNS) demyelination or MS and Gardasil have been reported (cited above). There may be a connection between the demyelination process and the thyroid injury that develops as an adverse immune response to a drug or vaccine. More importantly, there may be a treatment opportunity.

Thyroid Hormones Affect Myelination

Almost a decade of research conducted solely in animals, rodents and monkeys, shows a connection between decreased thyroid function and demyelination disorders. Specifically, researchers found that administration of the thyroid hormone triiodothyronine (T3) not only improves the clinical course of the MS – like symptoms but effectively switches the disease process from a primarily demyelinating progression to remyelination. That is, the T3 induces cell level responses that regrow the protective myelin sheaths around CNS axons and corrects the medication-induced, tissue level, hypothyroidism. For the young women experiencing the host of neurological and neuromuscular symptoms post HPV vaccine, Gardasil or Cervarix, and/or post Lupron, this research may point to both an etiology and a treatment opportunity – disrupted thyroid metabolism mediated by an inflammatory reaction and T3 supplementation, respectively.

Dysregulated Thyroid in Critical and Chronic Illness

Vast amounts of research show a connection between thyroid function and critical and chronic illness. Hypothyroidism is common in what are otherwise considered ‘euthryoid’ or ‘normal’ thyroid individuals, but whose physiology is so severely stressed by disease or injury, thyroid function is affected. The presentation of diminished thyroid function during severe or chronic illness of unrelated etiology is often difficult to determine and its treatment is controversial. In these cases, thyroid stimulating hormone (TSH) is within the normal range in all but about 10% of patients and thyroxine (T4) may or may not be reduced. If and when further analysis is completed, T3, however, is often shown to be significantly diminished, the T4/T3 ratio is larger, reverse T3 (rT3), the T3 deactivating hormone is increased, while the enzymes responsible for converting T4 to T3 are reduced; clear evidence of disrupted thyroid metabolism that can be missed with traditional testing.

With the mixed laboratory presentation and evidence that supplementing with levothyroxine (synthetic T4) does little to improve patient outcomes, treating illness induced thyroid dysfunction is controversial, many physicians and medical organizations argue against treatment. Indeed, even in primary hypothyroidism, treatment with anything other than levothyroxine – T4 is controversial. Perhaps it shouldn’t be. The evidence reported in these animal studies, clearly indicates, T3 dysfunction and consequent supplementation controls the demyelination and remyelination process at the cell level and may improve clinical outcomes.  In this research, T3 supplementation also improved T4 levels without a concomitant onset of hyperthyroidism, the reason often cited for not utilizing T3.

What This Means

If you or your child are suffering with the constellation of symptoms associated with an inflammatory nerve disease such as multiple sclerosis and/or if you have known hypothyroid symptoms in combination with undiagnosed neuromuscular symptoms, it’s time to connect the dots. The two may be related and may require T3 supplementation. Whether these symptoms were initiated with an adverse reaction to a medication such as Lupron, a vaccine such as Gardasil or Cervarix, or by some other process entirely, the research presented here clearly suggests a role for T3 in the array of symptoms associated hypothyroid disease and CNS demyelinating diseases.

Some of the symptoms associated with MS include:

  • Vision problems (optic neuritis)
  • Numbness or tingling of the face, arms, legs
  • Chronic, unexplained pain
  • Muscle spasms – painful muscle contractions
  • Uncontrollable, often painful jerking of the arms or legs
  • Extreme fatigue and weakness
  • Dizziness
  • Vertigo (spinning)
  • Balance or gait (walking) problems
  • Hearing problems or loss
  • Seizures
  • Uncontrollable shaking
  • Breathing problems
  • Slurred speech
  • Trouble swallowing
  • Dysfunctional bladder urinating frequently, strong urges to urinate, or inability to hold in urine
  • Bowel problems – constipation, diarrhea, or loss of bowel control
  • Memory problems
  • Concentration problems
  • Language/speaking
  • Depression
  • Rapidly switching moods
  • Uncontrollable moods
  • Inappropriate moods

These symptoms have been noted in post Gardasil or Cervarix reactions, and as we are learning, in post Lupron reactions as well.  Even though these are two entirely different medications with entirely different mechanisms of action, the core reaction illness that ensues is inflammatory and often attacks the thyroid. When the thyroid is compromised, a range of other pathophysiological processes emerge, including demyelination. Certainly, additional research is warranted, but in the absence of time, and in the face of great suffering, T3 testing and supplementation may be indicated.

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Photo by Markus Winkler on Unsplash.

This article was published previously on Hormones Matter in August 2013.

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A Life Journey to Wellness – With Chronic Pain and Fatigue

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Robyn Myers

Today much is made of being healthy, of the importance of health and wellness. I have always been “healthy” – I still am technically, even with my chronic pain and fatigue conditions. But through the years I have come to think of health as my Doctor does, as things like a healthy lifestyle with good food and regular exercise, a healthy weight, good blood pressure, normal lab work. I have those things. When I think of “wellness” I think more of my “well being” instead of whether or not I am feeling good at the moment – because for the past 15 years I have had pain and fatigue and other symptoms every single day. In fact, I haven’t had a day without joint pain since my second Lupron shot back in 2001 – but more on that below.

But I have had a few pain free hours, and with “skills and pills” (as my Chronic Pain psychologist used to say) I can get my pain and discomfort to fade into the background for a while most days. I have learned that I can feel good about feeling bad – well, or to at least be “okay” with it. I have also applied all my skills as a research scientist (in Ecosystem Ecology) to my own medical condition. This has given me a sense of power and control over the uncontrollable nature of the symptoms caused by my chronic conditions (I have several) – but all were eventually eclipsed  by the diagnosis as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS – also known as ME/CFS/SEID etc…). Whether they are caused by hormonal, mitochondrial, nervous or immune system related problems (probably all of the above), does not really matter in my day-to-day management of my symptoms, since there currently are no treatments. I manage my symptoms by eating healthy, walking and doing yoga for exercise, making sure I get good sleep, and pacing my activity and rest.  I am able to be active at a slower, relaxed pace. I am working hard to be as “healthy” as I can be, treat my symptoms individually, and I try to focus on my wellness and well being. Our bodies are amazing things, and though I have felt for years than mine let me down, I have discovered that in reality it is a complex and amazing thing.  Even with genetic predispositions and chemical assaults, I am trying to support my body so that it has the best chance to heal itself, and I am getting better.

For those who want the details of my predisposing conditions and my healthy journey with endometriosis, Lupron and CFIDS, here is a more or less chronological account:

Pre-disposing Conditions

As a baby I often had allergies with earaches and fevers.  This was considered normal. When it is actually a sign the immune system is kicking into action for things in the environment that “should be” normal. For me they were an allergen.

In elementary school my knees and ankles hurt, and all my joints were “funny” – in that they bent back farther than everyone else’s, which was entertaining on the playground.  The Pediatrician said this was nothing to worry about and these were “just growing pains.” He suggested my parents have me take ice skating lessons to strengthen my ankles. In fact, 35 years later I was diagnosed with benign hypermobile joint syndrome, a condition which causes joint pain, inflammation and other symptoms.

We are Born with Endometriosis

At age 12, with my first menstrual cycle I had horrible cramping pain.  I was told “this is normal for some girls” and given a hot water bottle and told to take Midol®.  I knew this was not “normal” but no one could tell me why I felt this way when my girlfriends did not.  My mom understood and taught me coping skills so that the pain would not stop me from enjoying life.  Each month the pain worsened. I can recall my major life events in my teens and twenties by whether (or not) I was on my period and in terrible pain. By my mid-twenties I had to miss a day of school or work a month to manage the pain. I was prescribed Motrin® and birth control pills to manage my cycles. Over time pre-menstrual symptoms began, so I had pain and discomfort before and during my periods. It felt like I was just recovering from one cycle, and could enjoy  one pain-free week, and then PMS would begin the cycle all over again.  My doctors were sympathetic but really could not do much for me. They offered birth control to help control my cycles.  I started with low-dose pills, which would help for a while, but as pain and heavy bleeding would return they would move to a stronger pill.  In my late 20s a diagnostic laparoscopy confirmed I had endometriosis and fibroid tumors.  It explained all I had been experiencing since age 12.  I felt vindicated that I had been going through was NOT normal. But all they could do was recommend I go off birth control, so that my husband and I could try to have a baby as quickly as possible. I stopped taking birth control, knowing my abdominal pain would get worse, but we hoped to let nature take its course on the timing of a baby.

Odd Mono-like Viruses

During the 1980s, in my 20s, in college as an undergrad and after periods of high stress (such as finals), I had several multi-week episodes of fatigue, sore throat, swollen glands, flu-like symptoms.  I was always tested for Mono (which always came back negative) and was always told I “had a virus.”  I always bounced back from these, and went back to my worsening month-to-month endometriosis symptoms.

Hypothyroid Hormone Crash

I was in Graduate School in the 1990s, in my 30s, and having the time of my life doing research I loved and advancing my career.  However, after the high stress of prepping for and passing my PhD oral exams in 1994 I crashed, as “everyone does,” but this time I didn’t bounce back. I was beyond tired with a new the bone crushing fatigue (I attributed the many other vague symptoms to my endometriosis).  I guessed I might be anemic from my heavy bleeding during my periods, but my blood work showed a high TSH level, indicating, that at age 35, I was hypothyroid.

As most do, my doctor prescribed Synthroid® which restored about 80% energy, but my endometriosis was worsening with menstrual migraines and month long pain. One lesson I learned was not to assume that all my symptoms were related to my endometriosis, although the hypothyroidism had almost certainly made my endometriosis and infertility worse. By the end 1997, since I already had secured a good career position, so that when I filed my dissertation my inability to get pregnant and my endometriosis were my primary concerns.

Infertility Treatment Treats Endometriosis

When I was unable to conceive and wanted to get pregnant, I was referred to a Reproductive Endocrinologist. He did extensive testing, followed by extensive surgery to remove numerous marble sized fibroid tumors and patches of endometriosis (treatment that, at least in the 1990s, was not offered to me unless I wanted to have a baby). What followed was three years of infertility (IF) treatments, with  repeated cycles that included my doctor balancing my hormones, then giving me stimulating hormones to grow eggs, followed by interuterine insemination. I knew the IF  process would caused the endometriosis and fibroids to regrow, and two more laparoscopic surgeries were needed to remove them again, as well as scar tissue caused by the previous surgeries, to give me the best chance to conceive. We were not successful, but at least had no regrets for not having tried.

Lupron Treatment

However, I was left with worsening abdominal pain from endometriosis and fibroids stimulated by the fertility drugs, and very difficult choices to make regarding treatment.  I considered hysterectomy but I really wanted to avoid it because of my scar tissue issues, and because I wanted to keep my ovaries. I researched Lupron and knew there were risks.  What I didn’t know was that I had pre-disposing conditions that made it riskier for me and more likely I would have a bad reaction. We were more concerned about scar tissue causing lifelong abdominal pain if I had more surgery. Lupron seemed like the conservative choice to shut down the endometriosis and shrink the fibroids. I was told the treatment would be six monthly Lupron Depot injections. I insisted on, and my doctor agreed to, low dose hormone add-back therapy (estradiol and progesterone, prescribed separately) to minimize side effects.

With my first Lupron depot monthly injection (in Dec 2000), I had the expected mild menopausal side effects. The second injection the following month added severe joint pain in all paired joints to the hot flashes and other symptoms, but in addition, my abdominal pain went down!  I was told that the joint pain should go away after about 6 weeks, but unfortunately, it did not. By the end of Lupron treatment my abdominal pain was reduced by half (and was considered a success) but my Doctor recommended we stop treatment after 5 injections due to the joint pain. I was assured the joint pain should stop with the treatments. In fact, it has never gone away. Eventually, I was referred to a rheumatologist. I reported my negative experience with Lupron to the adverse drug events sections of the FDA.

Post Lupron Joint Pain

My doctor recommended that I take the birth control Depo Provera to try to maintain the “Lupron gains.”  This was mid 2001, and it worked for a while, before the abdominal pain and bleeding slowly returned, and then worsened.  During this time, I still thought the endometriosis, hormones and abdominal pain caused the fatigue, nausea, and unwellness I was experiencing. Between my primary care doctor and my rheumatologist, they were treating my individual symptoms and watching me become more symptomatic. By  2002 my joint and abdominal pain was so bad I was on 8 vicodin a day and high dose ibuprofin.

Chronic Pain Clinic – “Skills and Pills”

I was referred to a chronic pain clinic (CPC) to receive better prescription pain management and cognitive behavioral therapy which helped me to learn coping skills like mindfulness meditation, self-hypnosis, and other skills in order to “feel better about feeling bad.”  Thanks to the “Skills and Pills” of the two year Chronic Pain Clinic program, my pain was now  under better control. I was still working fulltime, but more and more days from home a few days a week now as the fatigue, brain fog, headaches, flu-like symptoms all worsened along with the ab pain.

Minimally Invasive LAVH-BSO

At this point, I am still thinking all the fatigue and other symptoms are primarily from endometriosis pain, and that Lupron triggered the arthtitis due to HMJS. My rheumatologist blamed the Lupron for triggering it all (still does). My primary care doctor, rheumatologist and Pain Doctor all witnessed my decline.  By the Fall of 2003, I was bleeding so badly I sought  a referral for a minimally invasive GYN for an LAVH-BSO. To manage the endo, it was agreed the ovaries had to go. He did a great job. I have only very mild discomfort around my bikini scar – otherwise no further ab pain at all. I went on Vivelle Dot patch immediately. Minimal menopause symptoms at age 44.

Diagnosed with CFIDS

The Joint pain continued and the rest of the ME/CFS symptoms intensified through 2004-2005…I was struggling to keep working 3/4 time with “reasonable accommodations”, getting sicker and taking FMLA because I was out of sick leave. I was working so hard trying to keep working. Finally, an endocrinologist in 2005 said I met all the criteria for CFIDS (and told me it was ridiculous to blame the Lupron…she was wrong). My pain was managable but not the fatigue. I took the Bruce Campbell course in managing ME/CFS and added “Pacing” to my list of skills. By late 2006, I was facing medical retirement after 22 years and by June 2007 I was out on Federal Disability Retirement at age 48.

Thanks to my Kaiser Doctor’s observing my decline and my own ability to write, I was awarded SSDI on first appeal in 2008. Technically it is for chronic pain but really it was the fatigue, flu-like symptoms and brain fog that kept me from working. And still today keeps me from being as active as I once was.

Living Well with CFIDS

These days I have to sleep 8-10 hours per night. I used to take daily 2 hour naps but since starting Armour Dessicated Thyroid with T3 (in 2013), I get by with horizontal rests, not daytime sleep most days now. I have a 1:3 activity to rest ratio – for each hour of activity, I need about 3 hours of rest. I consciously “rest before and recover after” extra activities not part of my daily routine (from laundry to a doctors appointment to dinner out).

I keep regular hours, and most days I am able to make meals, take a 30-60 minute walk and can manage one “extra activity” per day. I do a bit of volunteer work. I leave the house 3-4 days a week for 1-3 hrs without a setback, depending on what I do. I can grocery shop (with effort) but no longer shop for pleasure. Despite this careful pacing ANY infection, social event, life stressor, or simply too long duration of mental, emotional or physical activity can tip me over into Post Exertinal Nueroendocrine Exhaustion PENE. I have a 36-48 hour PENE/PEM response (the time from the over-exertion to the crash) with increased flu-like and CNS symptoms and usually must rest 3 times as long as whatever caused the crash took to do.  After a bout of flu or an abscessed tooth, I have had bad dysautonomia episodes that resolved over weeks or months to my “baseline” – my “new normal” since Lupron activated or switched on (or off) a gene or damaged my mitochondria and reset that baseline. For me, the Lupron was the turning point. It is a tough balancing act. But I have worked on pacing, keeping healthy and being as active as I can.

Ironically my husband of 30 years has Fibromyalgia and knows keeping active helps him.  So we support and encourage each other. He helps me be active and I remind him to pace and rest and we have a happy life, all things considered. He was able to retire at 55 so we are able to manage our conditions and enjoy life. We have a truck-camper RV and a small cabin-cruiser boat from before I got sick, both of which have allowed me to travel and do things at my own pace, with my own bed, bath and kitchen.  Whether we are visiting family or traveling the West, this kind of travel allows me to be as active as I can without causing crashes. We are both very grateful for all we have.

It seems there are many ways to end up with the same or similar body response and set of symptoms that is ME/CFS and/or Fibromyalgia. For me if it hadn’t been Lupron, it would probably been something else since I have so many co-morbid factors. Understanding this has helped with acceptance. And knowledge is power. I know there are no ways, yet, to reset the genes or fix the mitochondria, or other body systems that no longer work as they should, but I am hopeful researchers, who care and collaborate, will find the answer.  In the meantime, I will work to be as healthy and well as I can be.

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