I have had Graves’ Disease since I was 7 and would like to help explain what it is to those who want more info or know of a friend or family member or even yourself suffering with this disease.
Graves’ Disease was discovered in the mid-19th century and named after Robert J. Graves (1796–1853), the Irish physician who first identified it.
What is Graves’ Disease?Graves’s Disease is an autoimmune disease. An autoimmune disease develops when your immune system, which defends your body against disease, decides your healthy cells are foreign. As a result, your immune system attacks healthy body cells. In this case, your thyroid would be under attack.
What is the thyroid?The Thyroid is a butterfly-shaped gland that sits against and around the larynx and trachea. The thyroid gland controls how quickly the body uses energy, makes proteins, and controls how sensitive the body is to other hormones.
How does the Thyroid work?
The Thyroid gland produces thyroid hormones, the main ones being triiodothyronine (T3) and thyroxine (T4). These hormones regulate the growth and rate of function of many other systems in the body (metabolism). T3 and T4 are made from iodine and tyrosine. The thyroid also produces calcitonin, which plays a role in calcium homeostasis.
The hypothalamus produces thyrotropin-releasing hormone (TRH) which makes the anterior pituitary gland produce thyroid-stimulating hormone (TSH) which causes the thyroid to produce T3 and T4 among others. TSH production is suppressed when the T4 levels are high. The TSH production itself is modulated by thyrotropin-releasing hormone (TRH), which is produced by the hypothalamus.
What Malfunctions in someone with Graves' Disease?
In someone with Graves' Disease, the thyroid over produces thyroid hormones (T3 and T4) as a reaction to being attacked by the autoimmune cells in the body. This causes an unnatural disruption of the negative feedback system shown above.
What Treatment is there for someone with Graves' Disease?Correcting the high thyroid hormone levels can be achieved with antithyroid medications that block the synthesis of thyroid hormones, thyroidectomy where the thyroid can be wholly removed by means of surgery or by treatment with radioactive iodine (RAI). These days RAI is the most common treatment for Graves' Disease.
What is RAI?RAI or radioactive iodine is a treatment most commonly used to treat Graves' Disease and other hyperthyroid conditions. Iodide is a main component of thyroid hormone so a large portion accumulates in the thyroid and, in a person with an over active thyroid, an even higher amount is accumulated. Radioiodide is administered orally by pill or liquid. A measured dose is given according to measurements made beforehand and it irradiates the thyroid cells that remove the iodide from the bloodstream. This concentrates the radiation in the thyroid which suppresses the thyroid cellular function.
What are symptoms of Graves Disease?Common signs and symptoms of Graves' disease include:
- Anxiety and irritability
- A fine tremor of your hands or fingers
- Heat sensitivity and an increase in perspiration or warm, moist skin
- Weight loss, despite normal eating habits
- Enlargement of your thyroid gland (goiter)
- Change in menstrual cycles
- Erectile dysfunction or reduced libido
- Frequent bowel movements
- Bulging eyes (Graves' ophthalmopathy) (TED)
- Thick, red skin usually on the shins or tops of the feet (Graves' dermopathy)
- Rapid or irregular heartbeat (palpitations)
What is TED?
About 30 percent of people with Graves' disease show some signs and symptoms of a condition known as Graves' ophthalmopathy (or Thyroid Eye Disease (TED)). In Graves' ophthalmopathy, inflammation and other immune system events affect muscles and other tissues around your eyes. The resulting signs and symptoms may include:
- Bulging eyes (exophthalmos)
- Gritty sensation in the eyes
- Pressure or pain in the eyes
- Puffy or retracted eyelids
- Reddened or inflamed eyes
- Light sensitivity
- Double vision
- Vision loss
What happens after RAI?Most people become hypothyroid after treatment with RAI. This is because the thyroid cells have been sufficiently irradiated rendering your thyroid unable to produce sufficient thyroid hormone. The reason for this is because treatment for hypothyroidism is easier than treatment for hyperthyroidism. This consists of regular blood tests and hormone replacement therapy which involves taking pills every day for the rest of your life.
What happens after that?You then have to have more blood tests and start gaining weight and then you modify your diet and exercise more and it doesn't help. So you go for more blood tests and you suffer from depression and then you do some research online and print out a booklet of research you've done online to take to your endocrinologist who then doesn't bother looking at all the reading you've brought him but agrees to prescribe you T3 with the T4 you've been taking for an eternity and suddenly your bad skin clears up and you stop the antidepressants and you feel so much better yet you still can't seem to knock any of the 20kgs you've put on over a span of 3 years but you feel more positive because it has plateaued for the past 2 years. When your levels are not optimal and you experience the normal stresses of life it can become overwhelming as fatigue can play a huge part and result in you feeling rather useless.
Most websites discuss what happens to you immediately after RAI and how you will become hypothyroid but there isn't much in the form of support for patients after that. Most websites and doctors seem to have this idea of a happily ever after by taking a pill a day everything will be back to normal and you will never have to do a thing again. In reality you still have an autoimmune disease and you can still show signs and symptoms of that disease as well as another condition you've "swapped out for" as you have treated a symptom and not the cause which is an autoimmune disease. You can experience symptoms related to Graves in the autoimmune side of things as well as new symptoms of being hypothyroid. The constant testing and tweaking of your meds until you reach the perfect dose.
Unfortunately your body changes as time goes on and the perfect dose years ago is not so now. Your dietary requirements change and you have a huge amount of adjustments to make. There are so many different facets to this disease and the effects it has on your body and even your emotions. You cannot look at your body as a sum of parts as each part influences another in some way. Stress affects you in a major way and then you get TED and have to have these really scary surgeries where they hack away at the inside of your face to make more space for your eyeballs. It's stressful to have surgery and to not be able to see for months because you're squint inbetween ops. You're told to re-evaluate your life and practise calming techniques but life happens and you hate your job and people die and you crash your car and you get dumped and it's very difficult to avoid stress altogether unless you're highly medicated where you have no concept of reality or you run away to a secluded cabin in alaska with no communication with the outer world but even then, you may see a bear and that would get me pretty stressed.
I hope this page has been informative and given you a little more understanding into this disease for yourself or your loved one and to know that I have only touched on the tip of what it is to experience this condition. There is so much to consider when trying to be your best and can become quite overwhelming when things aren't working optimally. If you are going through any of this, remember to take it easy on yourself and you don't have to be perfect, you only have to be good enough. It's a scary thing to go through and you won't receive the support you'd want from family and friends because they can't begin to understand what this is all about and you can't blame them. All you can do is try and at least not overdo it on anything if you can help it. Take care of yourself, exercise regularly, eat nourishing food, drink plenty of water and be kind to yourself because you're going to be with yourself for the rest of your life.