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Graves Disease - RAI Vs. Methimazole

Updated on July 10, 2016

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!!

Graves Disease

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?

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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
  • Constipation
  • Cramping in the hands and ankles
  • Fatigue
  • Heavier than normal menstrual cycles
  • Depression
  • 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?

RAI

RAI

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    • Christine 2 months ago

      The RAI scares me due to the fact that the thyroid has to be destroyed. I don't understand why in this day and age we don't have a better treatment for Graves. Is havevtonstay in a hotel because I can't be at home and not kiss my cats. And I'm not paying for a hotel room. So, RAI is not an option. I'll have to go the methimazole route. I just don't want o gain weight or be more tired. I've pushed it at work with Graves and I can't deal with any more crappy side effects. I have a job in which I need to be very mobile, alert, work and long hours. All while wearing steel toed shoes. Oh, and a bad knee that needs surgery.

      And I'm very sure that major stress caused my Graves. I can pinpoint the exact time the symptoms started with the craziness in my life.

      This has caused me so much trouble and has essentially ruined my life. Theres nothing I can do about it, but I'm very lost and feel I dint have any option that will make things easier.

    • S. Hoffman 2 years ago

      I did the Propylthiouricil for a few years then Methimazole treatment for a few years more hoping for remission. Remission never happened for me and anti-thyroid drugs are only a temporary fix due to the potential side effects which I was experiencing. I ended up getting the RAI treatment. I can go longer periods now without having my blood taken and I am feeling much better. It has been a very long and hard road though.

    • anonymous 4 years ago

      I an not pleased that I have to take a pill the rest of my life. But I still feel I made the best decision. For my age and where I am in life, it was the right choice

    Methimazole (or other ATD)

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      • anonymous 3 years ago

        I am currently taking Methmazole. I am also taking Metoprolol for HBP and Eliquis for the Atrial Fibrillation that the disease caused. I was diagnosed on Sept. 1, 2013 and was told that I had All the classic symptoms yet I had been mis-diagnosed for 2 and 1/2 years prior to that. I started out taking 3 Methimazole pills a day, then it was reduced to 2 a few months later then reduced to a current 1 pill a day. I have gained weight rapidly (110 lbs). I also still have many symptoms but feel much better than I did. Just had blood work done two days ago to see how I'm doing. Waiting for those results.

      • anonymous 3 years ago

        I would rather be hypo any day then dangerously hyper, so I choose methamozole I went into remission 5 years ago wen first diagnosed with Graves' disease it only took 3 months to go into remission , this time around I have been on merhamozole for 1. Year got my blood work done last week an it came back 20 hypo now so will see praying for remission again !!!!! How did I get this thyroid crap anyway ??? I have always been healthy my whole life

        I believe in healing an mind control :)

      • anonymous 3 years ago

        I would rather be hypo any day then dangerously hyper, so I choose methamozole I went into remission 5 years ago wen first diagnosed with Graves' disease it only took 3 months to go into remission , this time around I have been on merhamozole for 1. Year got my blood work done last week an it came back 20 hypo now so will see praying for remission again !!!!! How did I get this thyroid crap anyway ??? I have always been healthy my whole life

        I believe in healing an mind control :)

      • anonymous 3 years ago

        Methamozole

      • anonymous 3 years ago

        I take methimazole..I was afraid of the RAI.

      • TeacherSerenia 4 years ago

        I too have Graves. I am still on Methimazole, but have become overmedicated and am now slipping into Hypothyroidism. I will be asking for some hormone at my next appointment. I refuse to be nuked (with RAI) and am reluctant to have Surgery. See my Thyroid Awareness Month lens for my personal story.

      • Genesis Davies 4 years ago from Guatemala

        The RAI sounds really scary! I wouldn't want to mess with radiation, I don't trust that they know everything about it, so I would probably stick with Methimazole unless I had to try something else.

      Treatment Option #3

      Surgical Removal

      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

      Graves' Disease: A Practical Guide (McFarland Health Topics)
      Graves' Disease: A Practical Guide (McFarland Health Topics)

      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.

      Living Well with Graves' Disease and Hyperthyroidism: What Your Doctor Doesn't Tell You...That You Need to Know
      Living Well with Graves' Disease and Hyperthyroidism: What Your Doctor Doesn't Tell You...That You Need to Know

      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.

      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.

      Please share your experience with Graves Disease

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        • Lady Lorelei profile image

          Lorelei Cohen 3 years ago from Canada

          Just stopping by to wish you well. My nephew has now also been diagnosed with Graves disease. It is hereditary but thankfully so far they are the only two diagnosed with it.

        • Wednesday-Elf profile image

          Wednesday-Elf 3 years ago from Savannah, Georgia

          Very informative. Thank you.

        • Loretta L profile image

          Loretta Livingstone 4 years ago from Chilterns, UK.

          I don't have Graves, I visited because you stopped by my lens and when I saw you had Graves Disease I came to read more. I know a little about it, but it isn't a well known condition, I don't think. Because I, also, have an auto immune disease we share some symptoms. Mine has improved recently. I hope yours does too.

        • iwrite100 profile image

          Maribel Forayo 4 years ago from Philippines

          My husband has auto-immune disease. It's really confusing how the body "soldiers" will start attacking its own. It is equally frustrating that science is still not fully clear about the causes of these health concerns. I wish there would be some breakthrough on this concern soon.

        • WindyWintersHubs profile image

          WindyWintersHubs 4 years ago from Vancouver Island, BC

          Just stopping by to learn about Graves Disease. I have had different medical problems but they seem to be related to allergies. I recently had thyroid testing but so far no issues. Thanks for sharing your experiences.

        • Lady Lorelei profile image

          Lorelei Cohen 4 years ago from Canada

          My brother has graves disease. He tried the radio active iodine and then had surgery to remove half of his thyroid. I have thyroid issues but not Graves disease.

        • TeacherSerenia profile image

          TeacherSerenia 4 years ago

          You can read my story with Graves on my lens - Thyroid Awareness Month (which is January). I just published it this week.

        • MariannesWhims profile image

          Marianne Gardner 4 years ago from Pacific NW, USA

          I'm just stopping by. I don't have Graves. You made a very informative lens to help others that may have. May your New Year be blessed with good health, (little symptoms or attacks of Graves) and happiness doing what you enjoy.

        • heartycindypen profile image

          Hearty Cindy Penaranda 4 years ago from Ormoc City

          I don't have it. But my sister has a different disease called SLE... it is still an autoimmune disease

        • junecampbell profile image

          June Campbell 4 years ago from North Vancouver, BC, Canada

          I do not have Graves disease, but this summer I did develop an autoimmune skin disease called bullous pemphigoid. I looked into alternative health practices (i.e. Silva Method and meridian tapping) and I am happy to say the disease is almost gone except for an occasional flareup.

        • athomemomblog profile image

          Genesis Davies 4 years ago from Guatemala

          Scary stuff! You have written very well about it here. I didn't even know that Graves existed, so this was very informative.

        • sponias lm profile image

          sponias lm 4 years ago

          I don't have any problem; Im simply visiting this lens.

          I hope you'll feel better and find peace. Perhaps holistic medicine can help you more than traditional methods.

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          marsha32 5 years ago

          I don't think that I have Graves, but I do have trouble sleeping, get fatigued easily and have a rapid heartbeat.

        • JenwithMisty profile image
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          Jen withFlash 5 years ago

          @Terrie_Schultz: Thanks for stopping by! I hope that someone can get some helpful information from this lens. It's been very frustrating for me to find the information that I'm looking for and I'm hoping to put some more information out there soon.

        • JenwithMisty profile image
          Author

          Jen withFlash 5 years ago

          @OrlandoTipster: Thanks! I'm hanging!

        • JenwithMisty profile image
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          Jen withFlash 5 years ago

          @marsha32: Have you had your thyroid levels checked lately? I think that the rapid heart rate is a big sign for me. Now that I'm overmedicated, my heart rate is really low.

        • OrlandoTipster profile image

          OrlandoTipster 5 years ago

          Hang in there!

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          Terrie_Schultz 5 years ago

          Thank you for this informative lens, I'm sure it will be helpful to people suffering from Graves disease. The RAI sounds really scary. I had a friend who had thyroid cancer, and she had to have radiation therapy to kill her tumor and then take thyroid hormones.