If you have Grave’s disease, your journey may be more complicated than let on by the doctors when you were first diagnosed.
An individual diagnosed with Graves’ disease will always have the autoimmune disease marker, no matter what treatment they receive. Graves Disease is treatable, but it’s not curable. This means that a person with Graves’ disease will have the illness their entire life.
In my case, I received RAI treatment for hyperthyroidism. It was supposed to kill my thyroid and I would then take one pill for the rest of my life. It is easier to treat hypothyroidism than it is hyperthyroidism. This doesn’t mean that hypo is easily solved. The journey will be long.
For example, currently, my blood test shows that my thyroid is no longer in hyper mode and functioning properly. I should be feeling better, but I’m not. I’m actually feeling worse. I am just coming out of another flare up of symptoms. I was in a wheelchair last weekend because I couldn’t walk due to pain, inflammation and bruising. I spoke to my endocrinologist and 2 things came out of the conversation:
- Although my blood test came out normal, my thyroid could just be taking time dying and my T4 could be going into hypo mode without showing on blood test yet or so she explained.
- This Graves marker can trigger another autoimmune disease. It’s starting to look more and more like this is my case. I am also being followed by a Rheumatologist who I am seeing next month to confirm and diagnose which other autoimmune diseases might be responsible for my symptoms.
Not every person will develop another autoimmune disease. If you haven’t that’s wonderful. If you do, it may be the result of genetics or simply from cause and effect. The longer your body suffers from the hyperthyroidism symptoms the greater the chance of wear and tear on your body which could misdirect other antibodies. In my case, the doctors suspect I have lived with Graves Disease for more than a decade, maybe two. I have been to the doctors multiple times during that period, but my symptoms were always misdiagnosed. No one had made the link with Graves until 2016.
There are common markers between groups of autoimmune diseases. The most commonly known in association with Graves Disease are Thyroid Eye Disease, Diabetes type 1, Celiac, Vitiligo, Pernicious Anemia, Lupus, Myasthenia Gravis, Rheumatoid Arthritis and Addison Disease, but it can also be any other autoimmune disease, which makes the process of diagnosing difficult.
As with any autoimmune illness, early diagnosis is the key. So it’s very important to keep your doctor informed of all symptoms, regardless if you think something is related or not and keep insisting. My endocrinologist upon first hearing of my symptom was confident they would diminish and go away, now that we are further along in the journey and the symptoms are only getting worse, she is realising that I may have developed an additional chronic illness and step are being taken to find out.
The road is long and discouraging. All we can do as Graves’ disease sufferers is be aware of our bodies, be honest and transparent with our doctors and be insistent.