Surviving Graves' Disease

To date, there is no cure for Graves' disease or any autoimmune disease.  There are however three standard treatments options for Graves' disease:  Anti-thyroid drugs, surgery and radiation. 

 

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Anti-Thyroid Drugs (ATD's)

 

The first treatment option is typically ATDs with the goal of remission. ATDs block the thyroid from producing excessive thyroid hormones and in response the antibodies no longer see the thyroid under attack so they back off. It's important to note that it will take about six to eight weeks for the medication to be effective. ADTs will block additional hormones, however, the current high levels of hormones circulating in the bloodstream will take about six to eight weeks to cycle through your system.

Below are the typically prescribed drugs.

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• PTU: Propylthiouracil (USA)
   

• MMI: Methimazole (USA)
   

• CMZ:  Carbimazole (Europe & Asia)
   

• Beta Blockers such as, Propranolol and Atenolol, are often used to help with rapid heart rate, nervousness, and tremors.

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If there is little to no response to ATDs, the doctor will typically discuss the option of RAI or Surgery. The concern is that long term hyper symptoms can cause serious damage to major organs; such as, the heart and kidneys.

 

A short-term fix used typically for RAI is block and replace therapy. You would take ATDs such as PTU at a high dose to block the thyroid hormones and also take levothyroxine to replace what the thyroid would normally produce. It doesn't really increase the rate of remission, but it does mean a lesser dose of RAI would be needed. It can only be used short-term due to the chance of liver damage from taking such a high dose of ATDs. It's possible to reach remission, but it doesn't typically last.

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Some doctors are willing to provide individual treatment plans with block and replace using a lower dose of ATDs so the liver is less at risk.  Finding a doctor willing to try this treatment may not be easy.  The standard treatment is if ATDs don't work then it's off to surgery or radiation.  The other part to this treatment to consider is the severity of the symptoms.  Severe heart palpitations could lead to serious heart problems, among other health concerns.        

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Thyroid Surgery (TT)

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In the case of Graves', a total thyroidectomy (TT) is typically necessary when choosing surgery.  A partial thyroidectomy would still allow the antibodies to continue wreaking havoc.  Without a thyroid, the antibodies eventually calm down and slowly reduce over the course of that first year of recovery. 

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Items to bring on the day of surgery:

 

• Download soothing and relaxing music on your phone or tablet.

• Eye Mask - makes sleeping so much nicer.

• Neck Pillow - great neck support for after surgery & sleeping.

• Button up shirts - you are probably not going to want to pull a shirt over your head for about a week.

 

What to expect after surgery:

 

Expect to have a sore throat and a diet consisting of ice chips for the first few hours after surgery.

 

Some doctors place a drainage tube at the end of the incision. It looks pretty strange but I promise there is no pain involved. Typically it will be removed within 24 to 48 hours after surgery.

 

You will most likely have tape across the incision. Neck mobility will be limited and there is some discomfort from the incision.  I have a very low tolerance to pain and had no problem with my surgery.

 

Your thyroid levels will be high for the first 3 to 5 days after surgery.  The extra production of hormones produced by the thyroid prior to the thyroidectomy combined with the added thyroid replacement medication the doctor will start you on following the surgery.

 

After the extra hormones produced by the thyroid have cycled through your system, there is often a sudden low or drop in energy - much depends on how hyper your thyroid was before surgery. Your body will need time to adjust to the thyroid medication and your doctor should be taking regular blood tests - typically every 4 to 6 weeks for the first 6 months.

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Iodine-131 Radioactive iodine (RAI)

 

Preparing for RAI Treatment:

 

Typically a doctor will advise their patient to stop taking ATDs 5-7 days prior to RAI and to avoid all foods with iodine two weeks prior to the treatment date.

 

Typically you are in complete isolation from pets, children and adults for the first day, but can for be several days. It is advised not to share a bed or bathroom for several days. All items touched must be disposed of or washed separately with hot water. How long you are isolated depends on the amount of RAI prescribed and whether or not you have young children in the home.  After the complete isolation, it is usually advised to keep the same distance you would if you had the flu for about a week.

 

Preparing for RAI again depends on the how much radiation is given. Some people will do what is minimally necessary and others will take every precaution possible. Everyone I've spoken to has said that a great support team is very important and makes a huge difference in recovery.

 

The list is a general list of what may be necessary:

 

• Prepare and freeze meals for about a week

• Paper towels, plates, cups and utensils

• A neck pillow is a great thing to have for watching TV and relaxing

• An eye mask is a must so that you can rest peacefully during the day

• Buy a few new books, magazines or crossword puzzles

• Lemon Drops help to prevent or to soothe a sore throat

• Case of bottled water - drink lots and lots of water to flush the radiation out

• Disinfectant wipes

• Plastic bags for the phone, TV remote and other small items

• Buy cheap or use old towels, mattress pad and linen

 

Talk with the hospital and ask if there is a hotel close by that has protocols for someone who is having RAI treatment. Since you have to spend time isolated and, depending on your household, it might be a little more relaxing to just spend the time alone in a hotel room without worrying about bed sheets, linen and plastic utensils.  Please do not go to a hotel without approval and protocols in place.  It would expose innocent people to radiation.

 

What to expect during isolation and after RAI:

 

What you will need to do again will depend on amount of radiation you are prescribed but for the most part the following is what you should expect:

 

• Daily showers if not twice daily

• Flush the toilet at least twice after use

• All dishes must be washed separate from others

• Drink lots and lots of water to flush out the excess radiation

• Sore throat (lemon drops and water help)

• Laundry should be bagged for a few days prior to washing and then do so separate from others.

 

Don't expect to feel anything significant right away. Typically after the first week, most people start to feel the swinging back and forth from hyper to hypo. Think of it as a tug of war - the radiation will be trying to destroy the thyroid while the antibodies will be trying to save it. This takes approximately 3 months before reaching a state of hypo - but, it could be sooner or take several months longer. It depends on the severity of your Graves and the amount of radiation.

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