Graves' Disease (Hyperthyroidism) - Information for Patients

I was diagnosed with Graves' Disease back in 2003. I've been around the block a few times and I know this is a confusing disease that many doctors just don't educate their patients about. I hope that by posting here someone can find the information they are so desperately seeking and may find the motivation to do their own research. I spent a long time reading and talking to people to gather as much information as I could before making any decisions regarding my health. I hope that my story can help someone else.

I welcome valuable insight into your life, symptoms and treatment if you've been diagnosed with GD. Or even if you are simply hyper or hypo thyroid. There is little education on the lab work and the tests necessary to properly treat a patient and many end up feeling terrible while they are told they are "ok".

I struggled for 2 years to find what was wrong with me. It started as simply as being more hungry than usual. I felt "sped up". I was tired all the time. Then the tremor started. And the weakened muscles. I couldn't climb the stairs. I began having diarrhea all the time and vomiting after almost every meal. I lost so much weight and was so sick I nearly passed out during the photos at my wedding. My heart rate was fast and irregular. I was tested for everything. Except thyroid. I got a new PCP and he did a full thyroid workup. This showed I was massively hyperthyroid and also that I had Graves Disease. There are many other symptoms of Graves' disease that affect the body, eyes and skin. A quick google will get you all of them.

Graves Disease is hyperthyroidism. But the difference between hyperthyroidism caused by something else is that Graves' patients have an antibody. GD is an autoimmune disorder. The body creates antibodies that attack the thyroid making it produce more and more hormone.

A normal healthy thyroid produces thyroixine (T4) when the pituitary gland sends a signal to it via TSH (thyroid stimulating hormone). When the thyroid has produced the correct amount, the pituitary gland stops producing TSH. T4 is then converted to triiodothyronine (T3). T3 is the hormone that is used by every cell in our bodies. T3 is probably the single most important hormone in us because it regulates everything. Without it, your brain doesn't function properly. Your metabolism shuts down. Your muscles and joints can hurt. Nothing runs right.

In hyperthyroid person, the TSH on a lab will be very low while the T4 and T3 will be very high. In a hypothyroid person, the TSH will be very high while the T4 and T3 will be very low. In Graves' patients, there is also the addition of the thyroid- stimulating immunoglobulin antibody (TSI) which causes the dysfunctional thyroid. There is a separate antibody for Hashimoto's Disease (the opposition of Graves causing hypothyroidism). TSI will be present in those with active GD. You can still have Graves and not have the antibodies in your blood. Graves can and does go into remission. The only way to diagnose it though is to have antibodies present. GD is hereditary. Graves can be treated but there is no cure. Please do not let a doctor tell you a treatment will cure you. You can get rid of the symptoms but you cannot get rid of the antibodies. More on treatments in a bit.

When being tested for thyroid issues, it's important to have the Free T4 and Free T3 done. T4 and T3 alone do not give accurate information as to the status of the thyroid health.

A lab for a "normal" person looks something like this.
FT4 - 1.5 (0.8 - 1.8 ng/L)
FT3 - 3.9 (2.3- 4.2 pg/mL)
TSH - 1 (0.5 - 4.70 µIU/mL)
TSI - 0-1.3 (>1.3 )

A lab for a hyperthyroid person with or without Graves Disease might look like this:
FT4 - 9.8 (0.8 - 1.8 ng/L)
FT3 - 13.5 (2.3- 4.2 pg/mL)
TSH - .0002 (0.5 - 4.70 µIU/mL)

And a lab for a hypothyroid person with or without Hashimotos or Graves Disease might look like this:
FT4 - .03 (0.8 - 1.8 ng/L)
FT3 - 1.3 (2.3- 4.2 pg/mL)
TSH - 11.5 (0.5 - 4.70 µIU/mL)

Please note that being within range doesn't mean you feel good. For most people, the higher end (as I posted in the "normal" labs) is the ideal place to be.

The first time I was diagnosed in 2003, the endocrinologist immediately wanted me to treat it with Radioactive Iodine (RAI). I didn't know anything about Graves or hyperthyroidism or RAI. I said ok. Then I started to do a little homework. RAI is poison.

It is a pill that you swallow that contains radioactive material and iodine. Since the thyroid is the main part of the body that takes up iodine, the RAI is carried from your stomach straight to the thyroid where the radioactive material slowly kills the thyroid cells. I was told that the thyroid is the only part exposed to the radiation and that it wouldn't harm the rest of me. I called bullshit on that. Here's why.

I was told that I was not to be in close contact with anyone (within 3 feet) for up to 7 days. Do not hold babies. Do not share a toilet and flush 2-3 times after you use with the lid down. Do not prepare food for anyone other than yourself. Wash all linens and clothes separately. Do not share a bed with anyone for 3-5 days. No kissing or hugging. If you are traveling, request a card from your doctor to let the security know you have taken RAI as to avoid setting off the detectors.

This says to me that RAI is present in EVERY cell of my body.

There are circumstances in which RAI is necessary. Such as cancer. It is a risk versus reward question and without fail RAI wins over cancer every time. But for a treatment of Graves' it is simply ridiculous. You kill the cancer with RAI. You do not kill the Graves' with RAI.

There are many documented cases of people who have side effects from RAI that the doctors swear are not from RAI. However, it is a dose of chemo so you do the math.

When I finally declined the RAI treatment, my doctor told me I was stupid and would fail with the antithyroid medications. I got a new doctor and started the antithyroid treatment. I went into remission for seven years.

In 2012, the Graves' reappeared and this time it came back more quickly and more harshly than before. I got sicker, faster. I knew in my heart that every time the Graves' reactivated I would damage my body further. So I opted for surgery to remove the thyroid.

Please understand that by removing the thyroid it is not curing the Graves'. It's simply removing the part of the body that is affected by the Graves' so as to eliminate the symptoms. A complete thyroidectomy is not something to take lightly. You might eliminate the symptoms but you are also eliminating the one source of T4 in your body. A complete thyroidectomy means hormone replacement for the rest of your life. It means trading hyperthyroidism for hypothyroidism. However, finding the right doctor can make maintaining your hypothyroidism easy.

There are currently two ways to treat hypothyroidism caused by lack of a thyroid. Synthetic hormone (Synthroid) and natural desiccated porcine thyroid (Armour). Synthetic hormones contain only t4 and rely on your body's ability to convert it to T3. If you are not converting it well, you will still feel hypothyroid. This is why it is massively important for your doctor to dose you based on Free T4 AND Free T3. TSH can be an indicator of hypothyroidism because your pituitary gland is still detecting T3 in the system and it is still functioning properly but since there is no thyroid to talk to TSH is a test that can be done without. Free T4 only tests work only if you are feeling good while within range. If you are felling poorly and your doctor pulls a Free T4 only and you are within range, he or she will probably tell you that you are fine and that it is something else. And many times it is simply that yes, your T4 IS at a great level but your Free T3 is low because your body is failing to convert properly. If this is the case you have two options. You can add a synthetic T3 pill to the mix. Or you can opt for the natural desiccated thyroid.

NDT treatment is controversial to many doctors and many won't prescribe it. But it is basically the ground up thyroid of a pig. It contains T4, T3, T2 and T1 (as well as some other thyroid related hormones) which more closely match the human thyroid production. Some people report it is the only thing that keeps them feeling normal.

The best thing that someone with Graves' can do is research. Research until your eyes bleed and until you can recite back and forth all the things you need to know to make sure you're being treated properly. The thyroid is vital to your health.

Make sure you are your own advocate because if you aren't, you may not have anyone on your side.