Graves’ Disease is one of those hidden diseases. Which means that all the information found in scientific articles still doesn’t convey what is really going on inside the person who has it. In fact, Graves’ Disease is so hidden it’s hard for even the experts to diagnose it. Even worse is that empathy from friends and family is illusive because the disease is so invisible to everybody. Therefore, how do people with Graves’ Disease ever feel understood?  That’s the problem. Unfortunately, and sadly, it’s not so easy.

Walk Around in My Skin

I’ve been marketing healthcare products to patients and doctors for over 25 years. My holy grail has always been to understand my patients as if I were the patient myself. My mission has always started with this powerful quote: “The only way you ever understand a person is to climb in their skin and walk around in it” from Harper Lee’s classic novel “To Kill A Mockingbird”.

Power of Letters in Building Empathy

So, if you really want to understand someone, how do climb in their skin? One easy way is to start a simple technique like writing letters. Have you ever received a letter from your disease telling you what it’s doing to your body? Ironically, I received this letter after I was diagnosed with Graves’ Disease. The bugger knew that I knew and decided to announce itself. Graves’ disease jumped out of my computer as soon as I started searching around in Google. It was too creepy. It felt like it was in my mind and in my skin!

After over 25 years in marketing, I know the power of letters in building understanding and empathy. So, I’d like to share this letter I received from Graves’ Disease when I was first diagnosed.  Read on. Climb in my skin and walk around in it if you want to have an inkling about what Graves’ Disease is really like.

“A Letter to Me from Graves’ Disease”

• Hi. My name is Graves, and I’m an invisible autoimmune chronic disease that attacks your thyroid gland.
• I am now Velcro…ed to you for life.
• Others around you can’t see me or hear me, but YOUR body feels me.
• I can attack you anywhere and anyhow I please.
• I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
• Remember when you and energy ran around together and had fun?
• I took energy from you and gave you exhaustion. Try to have fun now!
• Love sleep? I can take good sleep from you and in its place, give you brain fog and lack of concentration.
• Want sleep? I can make you want to sleep 24/7, and I can also cause insomnia.
• I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
• Feeling puffy? I can also give you swollen hands and feet, swollen face and eyelids, swollen everything!
• Oh, yeah, I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
• Those clumps of hair? That’s me! I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me!
• Frustrated with your scale? Me again. I can make you gain weight and no matter what you eat or how much you exercise. Trying to lose weight but scale won’t budge? That’s me again keeping that weight on you. But I can also make you lose weight. I don’t discriminate.
• Some of my other autoimmune disease friends often join me, giving you even more to deal with.
• If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons:
• That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) Maybe you have a family history of me. Whatever the cause, I’m here to stay.
• I hear you’re going to see a doctor to try and get rid of me. That makes me laugh! Just try. You will have to go to many, many doctors until you find one who can help you effectively.
• You will be put on the wrong thyroid meds for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
• There are so many other ways I can make you sick and miserable, the list is endless – that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.
• Can’t get pregnant, or have had a miscarriage?
• That’s probably me too.
• Teeth and gum problems? TMJ? I told you the list was endless.
• You may be given a TENs unit, get massaged, told if you just sleep and exercise properly, I will go away.
• You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the doctor how debilitating I am and how sick you really feel. In all probability you will get a referral from the ‘understanding’ (clueless) doctor, to see a psychiatrist.
• Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
• Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
• Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “normal” person and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her thyroid pill” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
• I’ve been trying to keep this next part quiet, but since you’re reading this you already know.
• The only place you will get the kind of support and understanding in dealing with me, is with other people that have me. They are really the only ones who can truly understand.

I Am Graves’ Disease.

(author unknown)

Try Writing a “Dear Graves’ Disease” Goodbye Letter

After reading this letter, I hope you’ll write your own letter to Graves’ Disease telling it to move out! Tell Graves’ Disease about all the help you are getting from other people with Graves’ Disease who truly understand you. Tell it you’ll use every proven Life Hack you’ve learned to put Graves’ Disease in its place: In Remission. Remember the power of letters. Keep writing. It will help.

Live Well with Zest,

Bev xo

Written by Bev Hope

The post My “Dear Graves’ Disease” Goodbye Letter appeared first on Well with Zest.

In January 2017 I received a phone call from the nurse at my endocrinologist office. She said, “We have received your lab tests results. You have Graves’ disease. Dr. Hudak wants you to pick up a medication at your pharmacy and start taking right away”. Stunned, I rushed out to my drugstore and picked up my prescription for methimazole. As soon as I returned home, I started searching Graves’ disease on Google to figure out what in the world was going on with my body. When my son walked in a short while later,  I had learned enough to tell him my unfortunate news. I looked up from my computer and said, “I’ve got some bad news. I’m sick. I have been diagnosed with a chronic autoimmune disease like you. It’s not my pancreas, it’s my thyroid.”

My Graves’ Disease Journey

That day was a turning point in understanding the impact of type 1 diabetes on my son, seeing the journey he had been on for 7 years and then starting on my own new path with an autoimmune disease. Since January 4, 2017,  I’ve been on a Graves’ disease journey of shock, confusion, anger, grief, acceptance, and finally moving forward. I’ve made it my mission to share what I learn on my journey to help others dealing with a chronic health condition and to live full, active, joyful lives—to live Well with Zest!

So, let’s start with the basics of what I’ve learned about Graves’ disease.

What is the Thyroid Gland?

The thyroid gland is a butter-fly shaped organ that sits low on the front of your neck. The tiny 2-inch size organ is a vital hormone gland: it plays a major regulating the body’s metabolic rate, heart rate, cholesterol levels, digestive functions, muscle control, brain development, mood and bone maintenance. The thyroid makes two hormones that are secreted into the blood and carried to every tissue in the body:  thyroxine (T4) and triiodothyronine (T3). These hormones are necessary for all the cells in the body to work normally. So, this tiny butter-fly shaped gland is like your body’s operating system. It enables the body’s key organs to function normally and helps maintain overall wellness.

What is Graves’ Disease?

Graves’ disease is an autoimmune disease that damages the thyroid gland. With this disease your immune system mistakes healthy cells for foreign invaders and attacks the thyroid gland causing it to make more thyroid hormone than your body needs (hyperthyroidism).

Graves’ disease was first identified by the Irish physician Robert Graves in 1835. Graves’ disease symptoms can vary a lot depending on the individual and how severe the disorder has become. Because the thyroid gland has such widespread and vital roles in the body, signs and symptoms of Graves’ disease can be wide-ranging and significantly influence your overall well-being.

How Common is Graves’ Disease?

Graves’ disease is one of the most common autoimmune disorders and is estimated to affect 2%-3% of the general worldwide population. Graves’ disease is the most common cause of hyperthyroidism, causing 60% to 80% of all hyperthyroid cases. In the United States, the disease affects about one in every 200 people and is seven to eight times more common in women. Graves’ disease usually affects people between ages 30 and 60, but it can occur at any age.

What Causes Graves’ Disease?

Scientists do not know the exact cause of Graves’ disease. What is known is that somehow the body’s immune system is tricked into making anti-bodies that target receptors on the surface of thyroid, causing them to work overtime. In Graves’ disease the antibodies, called thyrotropin receptor antibodies (TRAb) or thyroid simulating immunoglobulins (TSI) bind to receptors on the surface of the thyroid cells. When they bind to receptors they stimulate those cells to overproduce and release too much thyroid hormones. The result is hyperthyroidism.

Risk Factors of Getting Graves’ Disease

Research suggests that Graves’ disease may be caused by a combination of genetic and environmental factors. Some of these factors have been identified but many remain unknown.  A number of factors that increase the risk of getting Graves’ disease include:

• Family history. Because a family history of Graves’ disease is a known risk factor, there is likely a gene or genes that can make a person more susceptible to the disorder.
• Women are much more likely to develop Graves’ disease than men.
• Age. Graves’ disease usually develops in people between age 30 and 60 but can hit at any age.
• Other Autoimmune Disorders. People or individuals connected to family members with other disorders of the immune system including type 1 diabetes, rheumatoid arthritis, vitiligo, celiac disease, lupus, pernicious anemia, and Addison’s disease are at risk.
• Emotional or Physical Stress. Stressful life events or illness may act as a trigger for the onset of Graves’ disease among people who are genetically susceptible.
• Pregnancy or recent childbirth may increase the risk of the disorder, particularly among women who are genetically susceptible.
• Cigarette smoking increases the risk of Graves’ disease. Smokers who have Graves’ disease are also at increased risk of developing Graves’ ophthalmopathy.

What are the Symptoms of Graves’ Disease?

The majority of symptoms of Graves’ disease are caused by the excessive production of thyroid hormones. Many of the symptoms can be confused with other conditions which can make it very difficult to diagnose Graves’ disease. The most common Graves’ disease symptoms include:

• Changes in mood, including irritability, nervousness and anxiety
• Rapid or racing heartbeat, irregular heart rate, heart palpitations
• Hand and finger tremors
• Sensitivity to heat and changes in temperature
• Increased blood pressure
• Difficulty sleeping, restlessness and sometimes insomnia
• Increase in sweating or warm, moist skin
• More frequent stools and/or diarrhea
• Weight loss despite normal or increased appetite
• Muscle pains, cramps and weakness
• Chest pain, shortness of breath
• Fatigue
• Hair loss
• Irregular menstrual periods
• Reduced libido
• Enlargement of thyroid gland
• Pain in eyes, gritty feeling, redness
• Eye sensitivity to light
• Bulging, puffy eyes

How is Graves’ Disease Diagnosed?

Graves’ disease can be difficult to diagnose. Aside from ophthalmopathy, most of the symptoms of Graves’ disease are shared with many other health conditions. The diagnosis of Graves’ disease is typically confirmed by an endocrine or thyroid specialist after conducting a number of tests which may include:

Physical exam

The doctor examines eyes for protrusion or redness, checks the thyroid for enlargement, checks pulse, blood pressure and looks for signs of hand tremor.

Blood sample

The doctor orders blood tests to determine levels of thyroid-stimulating hormone (TSH), the hormone that stimulates the thyroid gland, as well as levels of thyroid hormones (T3) and (T4). Another lab test option measures the levels of the antibody known to cause Graves’ disease.

Ultrasound

The doctor does an ultrasound scan of your neck that produces images of the thyroid to see if the thyroid is enlarged or if nodules are present.

Radioactive Iodine uptake. A radioactive iodine uptake test is done to measure the amount of iodine taken up by the thyroid gland. Your body needs iodine to make thyroid hormones. By taking a tiny amount of radioactive iodine in a pill, the doctor can measure the amount taken up by the thyroid within a specific time to determine if Graves’ disease is the cause of hyperthyroidism.

Imaging

If diagnosis of Graves’ ophthalmopathy isn’t clear from physical exam, the doctor may order an imaging test such as a CT scan, or MRI to create cross-sectional or 3-D images of the eye.

How is Graves’ Disease Treated?

There is much controversy surrounding the best way to manage Graves’ disease. Each case needs to be individualized, including the therapy, based many factors, thus requiring a careful discussion with your doctor about the risks and benefits of each option.

The goal of treatments for Graves’ disease is to lower the amount of thyroid hormone in your body or block the action of the thyroid hormone.

Conventional Medical Treatments for Graves’ Disease

There are three conventional medical treatments for Graves’ disease:

Antithyroid Medication

There are two approved antithyroid medicines for Graves’ disease; methimazole, or MMI and propylthiouracil, or PTU. These medicines keep the thyroid from making too much thyroid hormone.

Radioactive Iodine (RAI)

RAI is a type of iodine that destroys the thyroid gland by giving it radiation. The RAI destroys the thyroid cells so that your thyroid gland cannot make as much thyroid hormone. It cures the overactive thyroid gland, but it can lead to an underactive thyroid gland. If this happens, you then need to take thyroid hormone medicine for the rest of your life.

Surgery

Surgery to remove all or most of the thyroid cures the overactive thyroid but can lead to underactive thyroid. You will then need to take thyroid hormone medicine to replace the needed thyroid hormone your body can no longer make.

Doctors sometimes suggest taking a beta blocker medicine to help you feel better while waiting for your treatment to start to work. Beta blockers block some of the effects of excess thyroid hormone on your body. They slow down your heart rate and reduce symptoms such as nervousness and shaking.

Lifestyle and Home Remedies for Managing Graves’ Disease

To manage Graves’ disease, it’s not only critical to take your prescribed medication consistently, but to also incorporate healthy lifestyle choices. If you have Graves’ disease, it’s essential to make physical and mental well-being a top priority to help you keep the disease under control. Here are some of the lifestyle choices that can help manage Graves’ disease:

Diet

It’s important to reduce inflammation by eating healthy anti-inflammatory foods that supports the immune function. Avoid foods that trigger or worsen your autoimmune symptoms. Avoid foods and dietary supplements that are high in iodine as they worsen hyperthyroidism

Stress Management

Stress is a trigger with Graves’ disease. It’s important to incorporate relaxation into your daily routine, such as listening to music, mediation, massage, aromatherapy, taking a warm Epsom salt baths, taking walks, or getting out in Nature.

Exercise

Exercise helps lower stress and control inflammation. Brittle bones can occur with Graves’ disease, and weight-bearing exercises can help maintain bone density.

Eye Protection

It’s important to take precautions to protect your eyes. Wear sunglasses, use lubricating drops, apply cool compresses to your eyes to ease the pain, grittiness and dryness. Use a pillow to keep your head higher than the rest of your body to relieve pressure on your eyes.

Sleep

Incorporate relaxation techniques to help get necessary sleep. It’s important to  avoid drinking caffeine or doing stimulating exercise activities in the hours before bedtime. And further, it’s important to  keep digital devices down during bedtime. Use  relaxation techniques to prepare for sleep.

Quit Smoking

Cigarette smoking is a trigger for Graves’ disease and may make it worse. The high amount of toxins in cigarettes can aggravate your immune system, triggering worse symptoms.

Lower Exposure to Toxins

Drink high quality water, use organic foods whenever possible, avoid over-exposure to harsh chemicals. Be aware of potential side effects of long-term use of prescription and OTC medications.

What are the Complications with Graves’ Disease?

Without treatment Graves’ Disease can cause serious health problems affecting the heart, bones, muscles, menstrual cycle, and fertility.  During pregnancy, untreated hyperthyroidism can lead to health problems for mother and baby. Graves’ disease can also cause serious eye problems and less often, skin problems.  Graves’ complications include:

Thyroid Storm

Thyroid storm is a very rare, life-threatening condition caused by too much thyroid hormone that suddenly increases your heart rate, blood pressure and body temperature to dangerously high levels. A stressful event such as trauma, surgery, or infection may trigger thyroid storm.

Heart Problems

Heart problems such as irregular heartbeat (arrhythmia—e.g. atrial fibrillation) and heart failure.

Bone Loss

Bone loss that can lead to osteoporosis. After menopause,  women are at increased risk for bone loss and weak and fragile bones that break easily. Graves’ disease can speed up bone loss.

Pregnancy Problems

Problems during pregnancy for mother and baby.

What is the Outlook Graves’ Disease?

While there is no cure for Graves’ disease, luckily there are medical treatments available to manage the disease. There is also plenty that can help by making healthy lifestyle choices to manage disease symptoms and keep them from worsening. It’s important to monitor symptoms on an on-going basis because there are many triggers that worsen them.  Make sure you get professional help if you notice symptoms worsening, or if you are suddenly under a lot of stress and anxiety which can trigger a relapse.

Hope for a Cure of Graves’ Disease!

The positive outlook is breakthrough research is underway to identify the genes linked with Graves’ disease and to develop treatments that target the underlying cause of the disease vs. just treating the symptoms. The genes that have been studied as possible risk factors for Graves’ disease are part of a family called the human leukocyte antigen (HLA) complex. Apitope is working on a potential treatment to target the immunological bases of Graves’ disease, which would be the first innovative treatment in more than 60 years. There is real hope that someday there will be an actual cure for Graves’ disease.

My wish for Graves’ disease “Spoonies” like me, is to help you live Well with Zest despite having a chronic health condition. Never lose hope!

Cheers to living Well with Zest!

Bev

Written by Bev Hope

Reviewed by Board Certified MD

The post What is Graves Disease? appeared first on Well with Zest.