I had Graves’ Disease. This is my journey through what felt like a wasteland.
I was diagnosed with Graves’ disease approximately 15 years ago. I suffered life-altering symptoms for months before being diagnosed. I recovered within 2 years. I’ve never experienced a relapse, even thru multiple pregnancies. I recently read that doctors say only 30% of people with Graves’ gain remission. My hope is that this post can be an inspiration to others and bring the percentages up to 100%!
Millions of Americans are affected by Graves’ disease; however, at the time I was diagnosed, I’d never heard of it. I soon found out that my own body was attacking itself. My immune system was wreaking havoc on my thyroid gland resulting in hyperthyroidism. Some may idly think, “What’s so bad with an overactive thyroid? It must be nice to have a fast metabolism.” Well, here are the not so nice symptoms:
First, Click Here to learn about a life-threatening condition called a Thyroid Storm
Typical Symptoms of Graves’ Disease
- Altered Heart rate and Blood Pressure – You’ll experience a racing or pounding heartbeat. You may possibly feel your heart skip a beat, feel palpitations or out of the ordinary rhythm.
- Brittle Hair and Nails – Excessive hair loss is common, as is thinning hair. Nails may become brittle. You may experience a condition called Onycholysis or Plummer’s nails. Here the nail bed separates away from the skin.
- Cognitive Function – Some patients have difficulty concentrating, memory problems.
- Energy, Muscle, and Joint Problems – Hyperthyroidism can result in extreme fatigue which is felt in muscles and joints especially of the leg and arm. It can make activities as simple as climbing the stairs a difficult task. Oddly, some individuals will experience more energy.
- Eye Problems – Some develop Graves’ Ophthalmopathy wherein your eyeballs push out beyond their orbit. Serious symptoms can develop affecting their vision. Other eye-related symptoms can include a bulging of the eye, dry/red eyes, and pain behind the eyeball.
- Gastrointestinal Problems – This includes increased bowel movements, loose watery bowel movements, frequent urination, or vomiting.
- Goiter – The most common symptom of Graves’ is an enlargement of the thyroid gland referred to as a Goiter.
- Interruption of the Menstrual cycle – periods become irregular or absent.
- Mood Problems – Most patients with Graves’ disease or hyperthyroidism experience some changes to mood and feelings, ranging from irritability, and unpredictable mood swings, to depression.
- Panic and Anxiety – Anxiety is common, even panic attacks.
- Pregnancy Problems – Extreme weight loss in pregnancy or extreme nausea may be indicative of a thyroid malfunction. Rapid weight loss post-partum can also be a symptom of hyperthyroidism.
- Skin Changes – In some cases, individuals will see smoother skin with more vitality because of swift cell regeneration. Others experience acne, blister bumps, and hives, to name just a few.
- Sleep Troubles – It’s common to suffer from Insomnia, or if you can easily fall asleep you may have difficulty falling back to sleep upon unwanted waking.
- Swelling in Extremities – A condition called Thyroid Acropachy where fingertips and toes swell and become wider, sometimes even clubbed.
- Temperature Problems – Some may feel unusually warm or hot even to the point of running a low-grade fever. They’ll likely perspire more and more thirsty than usual.
- Weight Changes – Many lose weight without a change in their pattern of diet or exercise. They may experience a heightened appetite, yet not gain weight.
My Personal Symptoms
As we all know, every person, or body, responds differently while living the same event. I experienced may of the symptoms mentioned above though not all. These symptoms didn’t flatten me all at once, many of them came on gradually then worsened over time. I looked for pictures of that time to share with you, but I’ve thrown them all away. Needless to say, it wasn’t a photogenic time for me. 🙂
Initially, at the onset of Graves’ I had a little more energy and felt almost a manic need to exercise. This feeling was a welcome relief to the overwhelming fatigue I’d been feeling for 4 years after being diagnosed with Chronic Fatigue Immune Deficiency Syndrome.
However, that period of euphoria quickly diminished. The fatigue came back with an added kick. I could no longer walk a flight of stairs without heart palpitations and difficulty breathing. I had difficulty driving a car because of the uncontrollable tremors in my hands and legs. My resting heartbeat was between 100-120 beats per minute rather than the former 75 beats per minute. My heartbeat after exertion was around 150 beats per minute. I could hear my rushing blood and my palpitating heart.
My feet and ankles swelled like a 9-month pregnant woman with edema. I broke out with red boils reminiscent of the bible character, Job. I developed a small lump, not obvious to the casual observer, rather than a large goiter with associated tenderness and discomfort to that area.
I lost an extreme amount of weight within a short period of time. I dropped from 125 down to 100 lbs in a 2-3 week time span. Oddly enough, I wasn’t fully aware of the extent of my weight loss until a friend from out of town commented on it; therefore, the impaired cognitive function is another symptom I obviously suffered from. Shortly after the extreme weight loss, I ballooned up, literally swelled, to 140. This is not typical of Graves’ disease and so it caused me to think I wasn’t dealing with a thyroid issue, (more on this shortly).
I was able to swim in the Pacific Ocean which at the time was below 65 degrees. I still felt like I was burning up. I was constantly sweaty and thirsty. My hair fell out in small chunks at times. I suffered from Insomnia, but I didn’t relate it to Graves’ disease as I’ve had this problem my entire life.
At one point, my period was 6 weeks late. I kept taking pregnancy tests and wondering why they were all negative. I experienced bulging in my right eye accompanied by dryness and pressure. I was irritable and moody, but I ask you – who wouldn’t be under the circumstances? Fortunately, I did not experience panic or anxiety as many do.
My question upon diagnosis was, “Why? Why and how did I develop this disease when I thought I didn’t have the classic risk factors?”
Typical Risk Factors and Triggers for Graves’ Disease:
- Age – The riskiest age for developing Graves’ disease and hyperthyroidism is between 20 and 40.
- Aspartame – per holistic practitioners, consuming the artificial sweetener aspartame can be a factor.
- Bacterial/Viral infections – again per holistic practitioners this can be a contributing factor.
- Excess Iodine/Iodine Drugs – Certain medical tests, some topical ointments, and iodine supplements can expose a person to an overabundance of iodine which can set off hyperthyroidism.
- Gender – Graves’ disease and hyperthyroidism affect women 8 times more often than men.
- History – A personal or family history of thyroid problems, autoimmune disease, or endocrine disease increases your risk.
- Major Stress – Stress is a factor that appears to trigger the onset of Graves’ disease in some patients. Researchers have documented a definite connection between major life stressors — i.e., death of a spouse, divorce or separation, loss of a job, death of close family member, major accident/personal injury, moving, marriage — and the onset of Graves’ disease.
- Medical Treatments/Medications – “Some treatments and medications can trigger Graves’ disease including Interferon Beta-1b and Interleukin-4, immunosuppressant therapy, antiretroviral treatment for AIDS, and lithium. There are two particular treatments that are known triggers: a third of patients receiving monoclonal antibody (Campath-1H) therapy for multiple sclerosis (MS) develop Graves’ disease within six months, and receiving a donated organ or bone marrow transplant from someone with Graves’ disease can also cause the disease in the recipient.” – (Source)
- Overuse of Thyroid Hormone – Taking too much prescription thyroid can cause hyperthyroidism. Some OTC’s for energy, dieting, and glandular supplementation may contain some active thyroid hormone, which can cause hyperthyroidism.
- Pregnancy – During pregnancy and thru the first year thereafter a woman is at greater risk.
- Smoking – This habit directly increases the risk of Graves’ disease as well as exacerbating the symptoms.
- Thyroid Trauma – Overly forceful manipulation of, surgery/biopsy of, injection to either the thyroid, parathyroids or the area surrounding them can trigger Graves’ in some. Even a neck injury such as whiplash could be considered a traumatic prompt.
My Personal Risk Factors and Triggers & Diagnosis
So in looking at the risk factors listed above, yes, I am female. But so are lots of other people without Graves’, right? I was in the age range for increased risk, but again so are lots of other women. I had not been pregnant nor was I pregnant at the onset of Graves’. I had never smoked or even been exposed to excessive amounts of second-hand smoke. I did not ingest large amounts of aspartame. I did not take prescription medication. I didn’t even take birth control pills. I hadn’t had a bacterial infection. I did not take iodine in any form – I barely even used table salt (with or without iodine) to flavor my food. I wasn’t aware of a contributing family history. Again, I was not taking drugs nor had I undergone significant medical treatments.
I had been in a few car accidents (not my fault 🙂 ) up to this point, a couple of which did involve whiplash, but it was indeed minor. And, OK, stress was a factor if you consider multiple moves, loss of job, and being newly married as stressors– but I still felt like Graves’ disease was an awfully extreme reaction to these triggers. What was going on?
I later found out that my body was dealing with a critical physical onslaught. I was already afflicted with an auto-immune deficiency and I was sensitive to chemicals. Those two factors left me vulnerable to pesticide poisoning.
I lived in San Diego at the time. For those who aren’t familiar with the geographic location of San Diego, it’s just north of Mexico. I spent a short time (between ½ – 1 hr) at a house recently treated for fleas with a pesticide outlawed in the U.S., but legal in Mexico. This pesticide poisoning packed a 1-2-3 punch. First my thyroid rebelled, that resulted in my body literally falling to pieces, and in an effort to recover it pulled any fat from my food storing the poison in fat cells. I became very bloated.
Now, ideally, when your body starts acting erratically, regardless of risk factors, you go to a doctor. Your doctor will perform a physical during which they may notice an enlarged thyroid, among other symptoms. Your doctor will then have the lab draw blood to confirm the diagnosis of Graves’. The blood sample measures thyroid stimulating hormones, referenced as TSH, in your bloodstream. If you are low in TSH and high in thyroxine you’ll most likely be diagnosed with Graves’. Additionally, T4 may be elevated as will T3 levels.
My diagnosis came along a little later than the ideal. Since some of my symptoms mimicked a chronic illness I’d been battling, some came on gradually, and since I definitely exhibited the symptom of cognitive malfunction, I didn’t go to the doctor for quite some time.
My cat’s veterinarian was the first to convince me I needed find out what was wrong with me. I took my cat in for a respiratory illness, and the veterinarian asked if I was OK. I was flushed, perspiring, and jittery, all simply sitting in her air-conditioned clinic. She told me I looked like the sick one, not my cat.
I emailed my previous Naturopath / Acupuncturist living in Texas. He informed me that my symptoms indicated a toxic poisoning of some sort. I visited a holistic practitioner who did a saliva & hair analysis. He was able to determine that I had extremely high levels of a banned pesticide in my system. After a few sessions, I was unsatisfied with his technique to flush my system of the toxin.
In the meantime, a friend who had Shingles was visiting a doctor specializing in Chelation therapy with good results; I was invited to make an appointment. I received one Chelation session. By the end of the day, I was prone in bed with the worst flu symptoms and backache I’d ever experienced. This condition lasted for days and was not considered normal. Further correspondence with my previous Naturopath in Texas revealed that Chelation, for me, was a bad idea. The toxins which were trying to store away in fat cells of the body suddenly released into my system in one fell swoop; he told me I was lucky I didn’t end up in the hospital.
You may wonder, what kind of idiot was I that I didn’t go to a medical doctor immediately? Remember, many of these symptoms came on gradually, then worsened. Additionally, in the past I’d received inept care from the traditional medical community, this made me investigate alternative medicine.
After the scare with the Chelation therapy, I did indeed go to a traditional medical doctor who ran thru the normal physical. I was asked if one eye was naturally bigger than the other. I said yes, because none of us are perfectly symmetrical and one eye was indeed only slightly larger at the time. Of course blood work confirmed the doctor’s suspicion. It was Graves’. I was told I needed to get Radioactive iodine treatment. I was also told there was a strong chance that the treatment wouldn’t “cure” me and that I’d need surgery to remove the thyroid, leaving me on medications the rest of my life. I wasn’t OK with my options at the time.
Western Medicine’s Limited Treatment
- Beta-blockers such as Inderal and Lopressor will relieve symptoms of anxiety, tremors, and a rapid heartbeat. Anti-thyroid medications such as Tapazole stops the thyroid from over producing hormones. This treatment can last one to two years and in some people results in remission, but relapse is common. Radioactive iodine treatment is given to destroy overactive thyroid cells. As a result, the thyroid will shrink and symptoms will decrease. Prednisone may be prescribed for Graves’ ophthalmology to reduce swelling behind the eyeballs.
- When medications do not work, surgery may be an option. A thyroidectomy is performed to remove the thyroid gland. Surgery may also be used in treatment for Graves’ ophthalmology. Orbital decompression surgery removes bone between the eye socket and the sinuses, allowing the eyeballs to move back into normal positions. Eye muscle surgery involves the doctor cutting the muscle attached to the eyeball and then reattaching it further back, allowing the eyes to align normally.
My Personal Treatment Choices
I chose an alternative route. I felt that if homeopathic treatments didn’t help, then I’d resort to Western medicine. I chose an Acupuncturist that specialized in Chinese medicinal herbs. Gary Chen O.M.D., Natural Medicine Institute.
He reviewed my medical labs, checked my vitals, and set aside a considerable amount of time for a consultation. He determined a course of whole Chinese herbs that I brewed as a tea then drank 3-4 times a day. The tea was not appetizing! Many times I drank it while holding my nose. Every two weeks he followed up with me during another appointment. He would adjust the herbs and dosage as needed. This went on for approximately 1 year. My symptoms gradually subsided. During treatment, my husband and I moved to Texas. I continued my treatment religiously. I learned to monitor my own vitals, reporting the results by phone to the Acupuncturist every two weeks. I’d receive a shipment of fresh herbs to continue brewing. This went on for another 6 months to 1 year after which I was officially “cured”.
All my symptoms reversed. I never took prescription medication or had surgery. I’ve diligently had a thyroid panel run every year and it’s always come back in the normal range. During my pregnancies, the doctor’s were especially concerned I’d have a setback since pregnancy hormones have been known to affect the thyroid. My labs always stayed within the norms.
I’m extremely grateful that I no longer suffer from Graves’ disease. I’m glad that my body responded well to alternative treatments. I’ve learned to be more in tune with my body and be proactive with my health as well. My hope in sharing my journey is that others too can benefit from doing thorough research in determining the best treatment options for them, whether that is Western medicine, Eastern medicine or a combination of both.
Source material for more details on symptoms and traditional treatment:
Click Here to learn more about Alternative Treatments and Gary Chen
P.S. What about you? I’d like to hear how you’ve endured or overcome an illness.