RAI treatment – Personal Experience
Graves’ disease is an incurable autoimmune disease that leads to the over-activity of the thyroid gland, which is called hyperthyroidism. Graves’ disease can also cause mental illness such as depression and anxiety. It did with me.
I was first treated with medication to calm the thyroid and to help with depression and anxiety. I was also on heart medication for a while as my heart rate was way too high and I had issues with heart palpitations. I was able to go off them when the medication to calm the thyroid started working.
You cannot stay on medication for hyperthyroidism all your life. It’s simply not good for you in the long run. It might seem odd to replace one disorder with another, but hypothyroidism is much easier to treat on a long-term basis than hyperthyroidism.
My physical examination and my laboratory tests have brought my endocrinologist to recommend radioactive iodine (RAI) treatment to be administered. According to my doctors, this treatment has shown results for approximately 50 years and is the preferred way to treat hyperthyroidism. It is a permanent and more reliable cure for hyperthyroidism.
FACT: Radioactive Iodine treats Hyperthyroidism not Graves’ Disease
It’s important to understand that RAI treatment is for hyperthyroidism, not for Grave’s disease. Even after all is said and done, you may still be dealing with Graves’ disease antibodies since it’s a separate issue from any thyroid problems you may have. Destroying the thyroid gland may have no effect on the Graves’ antibodies since white blood cells produce the antibodies, not the thyroid gland. In a few unfortunate patients, RAI may actually increase the antibodies and worsen or induce thyroid eye disease, which can be painful and disfiguring. Of course, the doctors are really good at reassuring you that this is extremely rare and probably won’t happen to you. Please note that smokers are at higher risk for this complication.
2 weeks prior to the treatment, I am taking off all medication.
I also had to pass a radioactive iodine uptake and scan to determine the dose necessary to eliminate my thyroid. This is a 2-day test. On the first day, you will have a blood test and you will be given a small dose of radioactive iodine. The next day, you will pass a test to measure the amount of iodine your thyroid absorbed using a scan to do so. There will also be a physical test to determine the size of your thyroid. The larger the gland, the larger the radioactive dose.
I showed up at the hospital with my husband for an appointment with my endocrinologist to discuss any last minute questions I may have the morning of the treatment.
She explained that following the treatment my body and my thyroid would emit radiation for several days in small quantities. This means that in the days following radioactive iodine therapy, I would need to take certain precautions to prevent radiation exposure to others.
The radiation eliminates itself mainly through urine during the first days after the treatment, but also through my sweat and other body fluids. You have to drink a lot over the first few days to help eliminate the radiation as fast as possible.
Note: If you have little ones, you will have to find a place for them to stay (with family or friends) for the first week to make sure you aren’t a danger to them. Otherwise, keeping yourself in quarantine (at least 10 feet away) from everyone will work. The doctors strongly recommend that you take a week off work, instead of working from home because the reaction to the radiation can differ from person to person and you will need your rest.
There is no danger for animals except that they cannot drink out of the bowl since your urine is radioactive.
My endocrinologist explained radioactive iodine works by gradually shrinking my thyroid, ultimately destroying the gland. She explained that it would take 4 to 6 weeks for the Thyroid to die. As it dies, the thyroid releases all of the THS hormones and flushes it through my body. I would go from hyperthyroidism to hypothyroidism. That process is difficult on the body.
I was also explained that once the process is done, I will need to take life-long thyroid hormone replacements. It’s safe and reliable.
We made an appointment to see each other again at the 6 weeks mark, but she did give me the necessary paperwork to come in early if I really didn’t feel good prior to the 6 weeks.
I had to pass a pregnancy test, even though I was previously told that it would take a miracle to have more children. I also told that just some people who couldn’t have kids before the treatment are able to afterwards. I was told that I must be careful not to become pregnant up to a year after the treatment and/or until my thyroid is under control.
I was then given an iodine radiation pill and told to go home.
- Do not share items (utensils, bedding, towels, and personal items) with anyone else.
- Do your laundry and dishwashing separately.
- Wipe the toilet seat after each use. Wash your hands often, and shower daily.
I am lucky as our master bedroom as a private bathroom. I was able to use the space without too much worry.
I would say the biggest side effect/result is exhaustion.
I did have some Nausea that came and went. Sleeping it off helps a lot.
I didn’t have a metallic taste in the mouth, but it is one side effect many people report.
My doctor and the nuclear medicine doctor both told me that I would have to avoid public places and pregnant women for a duration of 2 weeks. It was okay to return to the office, but management would have to advise anyone pregnant or trying to become pregnant to avoid my cubicle and stay 6 feet away. If there was anyone pregnant, I would have worked from home, but since there wasn’t anyone, I returned to the office.
Back at work, but still getting exhausted really fast. Muscles pain is also pretty bad, especially in the lower limbs. By Friday, it felt like I was walking to two twisted ankles.
I also find that I am struggling with depression.
I did struggle with some nausea, but I’m unsure if it’s due to the radiation or to being exhausted and still forcing myself through a full work day.
My throat also hurts a bit, especially when I swallow, but it’s minor so I’m not worrying about it so far.
As far as I can tell, I did not suffer any severe side effects from the RAI, even if I was given the biggest dose allowed. I will still keep an eye open as these can develop months later.
According to my blood test results, I am no longer hypo. What surprised me is that the results are showing that my thyroid is working normally. I was under the impression that the treatments would kill my thyroid, which is confusing.
I should be feeling much better, but I’m not. I’m actually feeling worse. I still have a lot of symptoms, such as exhaustion, hair loss, muscle pain, inflammation, bruising, body temperature fluctuations, etc. My endocrinologist seems to think that I may have another autoimmune illness causing these symptoms. So that means more test, more waiting, it’s discouraging…