Graves Disease - RAI Vs. Methimazole
R.A.I. or Methimazole?
I have Graves Disease. It's an autoimmune disease which means that the immune system has gone awry. No one is really sure what causes the immune system to start attacking a person's thyroid but they have identified several "risk factors" like major stress, age, family history, pregnancy, and smoking.
There are only three options for the treatment of graves disease - none of which are desirable. They are RAI, anti-thyroid medication, and a total thyroidectomy.
I am not offering any medical advice on this page. I am only a graves patient who has done a lot of research and chosen the treatment that I deemed most appropriate for my life. If you are debating which treatment to use, please make sure that you really understand everything there is to know about the option that you choose. Don't jump into any of them without researching them first. Most importantly, don't let your doctor force you into something that isn't for you. Make it your informed decision unless you are in an urgent situation. At that point, your only option is to do what your doctor is telling you. Graves disease can be fatal. It's not something to mess around with.
Symptoms of Graves Disease
People can have lots of symptoms or only a few. They can be very troublesome or very mild. There can be many more symptoms than what's listed here but these are the most general ones.
I wanted this list to be a little more personal because a broad symptom list doesn't always help. For example, "fatigue" can mean a lot of different things to a lot of different people who are reading a symptom list but the fatigue with Graves disease can be extreme. If your loved one with Graves disease says they have to sit down to rest, they really have to sit down and rest... right now - not in an hour.
The Real Symptoms
- Trouble sleeping - This can vary from person to person. Some people can't fall asleep at all and will be awake for days. Some people wake up many times during the night and others just need very little sleep each night to function.
- Heat sensitivity - Is everyone else at the office complaining that they are freezing and you think they are all nuts? Are you constantly trying to strip down no matter where you are because you can't stand the heat for another second?
- Rapid heartbeat - It's a little scary the first time you have to go to the ER for something and everyone starts panicking that you are in tachycardia, but once you tell them you have graves disease, they all say okay and leave you alone.
- Fatigue or muscle weakness - This is a deep fatigue. When you say you have to sit down, you have to sit down now. If you don't, your whole body starts shaking and you feel like if you don't sit down, your organs will shut down. The muscle weakness can be a harsh reality that something is very wrong.
- Weight loss - You may lose a lot of weight or you might not. You might just maintain your weight on 5,000 calories a day. You can eat a whole pizza at a time, be starving an hour later so you eat again, and you never gain a pound. You might not lose it but you're not gaining it either. And be realistic, if you are trying to lose weight and cut out one soda a week, that's not enough to make you lose 5 lbs in 5 days. If you do lose that much, then admit to yourself that something is wrong.
- Hand tremors - Can't figure out why all the pictures you've been taking lately are blurry? Don't blame the camera, it's the hand tremors. Very frustrating if you enjoy taking pictures.
- Frequent bowel movements - If you have this symptom, food digests so quickly because of your rapid metabolism so you can plan to be in the bathroom about an hour after every meal.
- Irritability or nervousness - Ever hear of Grave's Rage? The little annoying things in life can really make you go ballistic!!
Hypothyroidism is fairly common but hyperthyroidism isn't. Whenever I say that I have a severe thyroid problem, people automatically assume that I'm hypothyroid because I gain weight instead of losing it.
Do you have Graves Disease?
Treatment Option #1
Methimazole (or other anti thyroid medications)
The more thyroid hormone that your thyroid produces, the less TSH that is produced, which makes FT4 and FT3 go up up up - resulting in hyperthyroidism. Tapazol, or the more widely prescribed generic Methimazole, stops that from happening. It blocks all that excess hormone from being produced in the first place.
When you are first diagnosed, if your hyperthyroidism is bad enough, your doctor will put you on a rather high dose of Methimazole (or one of the other anti-thyroid medications) for about 6 weeks. The reason they do this is to bring your levels closer to the normal range so that the RAI that they will recommend works better. After those 6 weeks, they will tell you that it's not working and you should have RAI. It is working, it just takes a long time for the thyroid to heal from the immune system attack.
As with the other options, there are risks associated with this form of treatment. The most common side effects are skin related such as rash or hives. The most major risk associated with Methimazole is that it can cause a syndrome where your white blood cells decrease sometimes to a very dangerous level, it's called agranulocytosis. It is very rare but can be fatal.
If you can manage your graves disease on Methimazole and get your levels in check, you can achieve remission. It takes a few years for most people to get there but it can be done. Again, you do have to worry about the side effects.
Treatment Option #2
RAI, otherwise known as Radioactive Iodine I-131
Radioactive Iodine. In my own words, here's what it is and how it works: A nurse comes out wearing a lead protective suit. They hand you a pill using tongs. They give you a glass of water and tell you to take the pill. Simple. After a few hours, they measure the radioactivity in your body and once it's to an acceptable level, they let you leave.
The radioactive iodine is then sucked up by the cells that will take it to the thyroid. The thyroid will then start to shrink as it slowly dies from the radioactivity inside it. You will be "cured" of the overactivity of the thyroid. Your FT4 and FT3 will come down and your TSH will finally come up. In fact, your TSH will keep coming up unless you take drugs to keep it down. You will have hypothyroidism and will need to take a replacement thyroid hormone for life. This is a significant side effect.
When you first get home, you will have to stay isolated in a room for at least a few days. When you use the bathroom, you have to flush the toilet a whole bunch of times so that you don't contaminate other family members. You have to eat with paper plates and plastic silverware for the same reason. When you're done eating, the used dishes and silverware are to be double wrapped in garbage bags before being thrown away. For the next 3 - 6 months, you must carry a card with you at all times that says you had the treatment because you will set off radioactive detectors at airports, etc.
I have not had this treatment so I don't know any other details. This information is from a friend who has had it done and is more of the personal things that I hardly ever read about. Although she is not doing great, she still feels she made the right decision because she was very sick with graves. I'm the opposite - I don't do well having hypothyroidism which is why I have not had RAI.
Overmedicated on Methimazole - Symptoms
If you are overmedicated on the methimazole, you will end up with hypothyroidism. Here's a list of some of the symptoms so you can gauge how you are doing. Remember that everyone is different and you need to figure out what you need to watch for.
These symptoms can all be very mild or they can be debilitating. The severity can even fluctuate from time to time in the same person.
- Weight Gain
- Cramping in the hands and ankles
- Heavier than normal menstrual cycles
- Elevated Blood Cholestrol
- Puffy face
- Dry skin
RAI or Methimazole?
Since none of the treatment options for graves disease are good options, I would like to know which option you chose. Are you happy with your decision? Are you glad you chose that option?
Which options did (or would) you chose?
Treatment Option #3
It is not common to have surgical removal of the thyroid anymore. The other 2 options are preferred but I wanted to touch on this briefly. Total Thyroidectomy is a complete removal of the thyroid. Since it is a surgical procedure, you have the risks of infection and there is a longer recovery time.
As with RAI, you will end up with hypothyroidism and will need to take replacement thyroid for the rest of your life.
Elaine Moore's Practical Guide
I have found that Elaine Moore has the most up to date information on Graves Disease. It's a great guide to keep handy if you have graves disease!
It can be frustrating living with Graves Disease
There's a lot of ups and downs when it comes to graves disease. Some days are great, others are rough. Somethings work great for one patient, but don't do anything for another. There's a lot of trial and error involved and a lot of frustration with doctors.
Do Your Research
I said it before and I'll say it again - don't rush into a treatment and don't let your doctor force you into one if you aren't ready. Some of these books might be able to help make the decision and that decision is yours alone. Two out of the three treatments are permanent, meaning you can't change your mind once they're done, which is why you need to make the best decision for yourself. No one can tell you what that is because it's different for everyone.
Tips and advice on how to keep your symptoms from raging plus lots of information about graves disease that you can understand.
My 4 Favorite Sites
These four websites offer excellent advice and information. You should always check with your doctor but when you can't get the answers that you are asking for, you can always check these websites or go to your local library and do some research.
- Living With Graves Disease
I have gotten so much useful information here. There's files of information and a forum where you can ask questions.
- Elaine Moore
Elaine Moore is a leading expert on Graves Disease. She offers up to date information and a place where you can ask her questions.
- Graves Disease Support Group on Yahoo
This is a Yahoo group. You can get lots of answers here. I have a little bit of a hard time with this format but if you are used to Yahoo groups, it shouldn't be a problem.
- Dr. Eric Osansky
Dr Eric has lots of great information on Graves Disease right here on this site. Be sure to check it out!
Books on Hypothyroidism
If you end up having hypothyroidism, there's plenty of books out there that will help you feel better. In fact, you'll find a couple hundred books about hypothyroid for every one that you'll find about hyperthyroidism. I asked my doctor about this once and she gave me the run around about the reasoning behind it.