The information is from my personal opinion, experience and information obtained from various websites and articles. The websites and research articles can be found under the Resource tab.
What is Graves' disease and why me?
Graves' disease is an autoimmune disease that targets the thyroid. The immune system mistakes a healthy thyroid for one that is under attack. As a result, instead of healing the thyroid, the antibodies trigger the thyroid to produces too many hormones. Overtime the thyroid and antibodies struggle back and forth – more antibodies mean more hormones causing hyperthyroidism.
The thyroid is shaped as a butterfly located under the voice box in the front of the neck. It’s often referred to as the battery for the body because the thyroid hormones provide the energy that controls/regulates just about every part of the body.
In most cases the cause is from one of the follow:
Hereditary (usually something triggers the GD to become active)
An extremely stressful event (i.e., death, divorce, life threatened)
Serious hormonal imbalance
Energy Drinks (long term use or could be a trigger)
Under a lot of stress dealing with an important issue, employment, family, etc...
With Graves’ disease, something usually causes the thyroid to produce a sudden and unusually high levels of hormones. As a result, the antibodies think the thyroid is under attack and try to save the thyroid. Once the event has passed, the antibodies continue to attack the thyroid which causes the thyroid to continue to produce those high levels of hormones.
It’s really a vicious cycle. Symptoms such as, anxiety, nervousness, hot flashes and heart palpitations slowly get worse overtime as the body is flooded with thyroid hormones.
Doctors... Doctors and more Doctors
Make an appointment with an Endocrinologist who specializes in Graves' disease. You may want to consider meeting with a second Endocrinologist. Keep in mind you are interviewing a long term doctor. Graves' disease can be a difficult journey and it's important to feel comfortable and confident with your doctor.
Discuss all treatment options with your doctor. Anti-Thyroid Drugs (ATDs), RAI and surgery. In my case, I had severe symptoms with a large goiter and, by the time I was finally diagnosed, it was too late for any chance of remission. I was on ATDs for a few months, but my symptoms continued to get worse. My primary care doctor referred me to an Ears, Nose & Throat (ENT) surgeon. I met my Endocrinologist after my surgery.
Doctors typically prescribe ATDs for about 6 months to a year, but long-term use on a low dose is typically safe as long as a liver panel is part of your lab work. If the symptoms continue to get worse then the doctor usually discusses surgery or RAI to remove the thyroid. Once removed, your body will need time to adjust from hyper levels back to normal and heal from the thyroid wreaking havoc.
You will also want to schedule an appointment with your Gynecologist, Dentist and any other doctor you have treated with over the last year to bring them up today with your Graves' diagnosis. Make sure all necessary papers are signed so that all your doctors can discuss your medical history and treatment with each other.
Here are a few things that helped me at home:
1) Wrist Blood Pressure Cuff: easy to use and so important to monitor your blood pressure. Discuss with your doctor how and when your blood pressure should be taken and the ideal blood pressure for you.
2) Fingertip Pulse Meter: A quick and easy way to know if you are over doing it and need to rest. Ask your doctor for specific ranges for your resting heart rate, exercising and doing day to day activities. Discuss a plan with your doctor so you know at what point you contact his office and when to seek immediate attention. With that said, a pulse meter will not help if a person is living every moment with a pulse meter stuck to their finger. The average resting heart rate is between 60-80 beats per minute.
3) Rest & Relaxation: It's so important to take "Me Time!" When life seems to spiral out of control be prepared with a list of things that will help get through the difficult moment such as: crochet, cross stitch, hot bath, books, paint, listen to music and, if nothing else works, just staring at a blank wall really does help to clear the mind.
4) Simply Life: Do yourself a favor and simply your life back to the very basics to give your mind and body a chance to heal and adjust from hyper back to normal. Don't stress about housework or evening meals. Try to avoid making commitments, do less during the holidays and birthdays. Chances are good by the time a person is diagnosed life is a bit crazy. Stress increases hyper symptoms and feeds the thyroid that produces the hormones, which is the last thing you want.
In my own personal experience, I came to rely on my blood pressure and pulse rate as a sort of way to monitor my TSH and medication in between my lab work appointments. If my BP or heart rate was consistently above normal then chances were good that something was off and I needed a medication adjustment. I have no clue if there is any medical evidence to support the correlation, I don't know if it would work for everyone, but it did give me a peace of mind and I felt more in control of my health.
Keep a daily journal
Keep a daily journal and help your doctor help you!
Regardless of where you are in your journey with Graves' disease, it's very important to keep a daily journal. Every symptom can be related to Graves' but not all symptoms are directly related to Graves'.
An example would be fatigue, poor concentration and joint pain. Those symptoms are common with Graves and will most likely resolve once the thyroid levels are within range. However, those same symptoms can also be related to something else such as, low Vitamin D.
Your daily journal should include things such as:
The time you take your medication
Daily Nutrition - what you had and how much
How much water you drink
Daily Stress - high, low, average
Daily Exercise - note if you had a very active day
Symptoms – physical and neurological
Good day/Bad day
A daily journal will help you to notice patterns of what triggers specific symptoms that could be related to your diet, stress or sleep cycle. The more specific you can be in providing your doctor with a list of symptoms and the severity of those symptoms, the better chance your doctor can accurately diagnose and treat you.
Helpful tips for surviving Graves' disease
Graves Disease/Hyperthyroidism causes the symptoms so it’s virtually impossible to treat a symptom without first treating the cause. Once the thyroid is treated and the levels are within optimal range the body then needs time to heal and adjust from hyper back to normal levels. Here are some tips for managing the symptoms and getting through those bad days:
Exercise, Yoga or Zen
Power naps are awesome!
Take "Me Time!" (read, paint, crochet, cook or a nice hot bath)
Put in your earbuds and blast it with your favorite music!! Make a special play list just for those really bad days.
Hair loss - a very common symptom of Graves' because hair growth depends on a balance of things such as vitamins, nutrition and hormones. Taking a specific vitamin like Biotin or consuming a power food may help to “manage” the symptoms of hair loss but, during the hyper state, the thyroid will always win. Once the thyroid levels are at optimal range, your body will then slowly return to a balance state. Have patience, there are a lot of parts that need to heal and adjust from hyper back to normal levels - the heart is first and hair growth is somewhere at the bottom of the list.
When it comes to friends and family members, I have found that sometimes telling a small white lie is a bit easier than the truth. Instead of telling someone you're having another bad day, it may be easier to simply say that you have a really bad headache or stomach ache. It's hard for friends/family to understand something that we don't even understand half the time. It's frustrating for not just us but for our loved ones too because you can't see the pain we are in.