Graves Disease - my story (in a nutshell)

Once again I have been asked about my experience with Graves Disease, the auto-immune disease that effects your thyroid gland. So here goes, sorry if you've heard it before but perhaps someone who has just been diagnosed with Graves or suspects they have it might stumble upon this post - my wish is that this might help you to realise you are not alone in dealing with Thyroid disease, and it really is as hard as it feels right now, BUT always remember (and this is really important, and something I had a hard time believing while I was in treatment) YOU WILL GET THROUGH THIS!
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I will tell you a little bit about my story and experience with Graves Disease, and please feel free to ask questions.

One year ago I went to a Dr for a routine visit to have some vaccinations, I was immigrating here from Ireland and needed to have these for my immigration papers. I was very blessed with the Dr I had my appointment with, he noticed that something was wrong with me even though I wasn't there for any of those symptoms and hadn't mentioned them - I didn't even notice them anymore.
He took blood tests and sent them away marked as urgent.

A day or two later they called to say that there was an extremely high result on my thyroid tests and that I needed to come in right away. I did and was told that there was no doubt I had Graves Disease and would need to start treatment right away.

I was shocked and upset, I had no idea what Graves Disease was, I had never heard of it before and at that moment in time I didn't like the sound of it. I laugh now when I think of it, but I didn't even know where my thyroid gland was located until that day, let alone that it wasn't functioning correctly.
My levels of FT4 (Free T4) and FT3 (Free T3) were extremely elevated, approx 5x what was considered 'normal' and my TSH was suppressed, so suppressed that it didn't register on the blood test.

My resting heartbeat at the time was approx 130 bpm. I had an extreme intolerance to heat, I was emotional all the time, I was losing weight at an unbelievable rate, I was having heart flutters and shortness of breaths, my hair was falling out in clumps and there was so many other things I had just gotten used to, I didn't even think they were related.

Right there and then I thought my life had fallen apart, and I think that is a fairly natural reaction to being told you have an incurable illness that you will deal with for the rest of your life.

I was referred to an Endocrinologist and put on medication to keep my heart rate under control (my wedding was less than a week from that day and my Dr was worried about the stress of that on top of the Graves Disease symptoms).

I was determined to find out as much as I could about Graves Disease, so I could fight it. I was determined to win. One thing I would really recommend is that you do your research. Find out as much about Graves Disease as you possibly can. Knowing what you are dealing with will help you to make the decisions you will have to make with regards to your treatment.

I was diagnosed in June 2009 and I had RAI (Radioactive Iodine therapy) in August of last year. I am not 100% sure if I would choose that method of treatment again with the information I now have, but at the time it was the best decision I could make. The RAI itself isn't too bad once you know what you're dealing with (although I was still terrified). It comes in the pill form, and you have to be isolated for a short amount of time afterwards. I was isolated for 6 days after, but that is different with each person depending on the dose of RAI you take. Most people have no real paid with the RAI treatment either, but I did have some since my thyroid was already so enlarged and my uptake test (which measures how much iodine my thyroid absorbs) was so high it was beyond measurable.

There are other treatments available to you, and it's important that you don't feel pushed into making a decision one way or another. Take some time to research the options and make the decision based on what you feel is right.

The other two options were surgery and thyroid suppressing medication.

For my case surgery was ruled out and apparently this is fairly common in cases of Graves Disease, but I wouldn't have picked that option for me anyway so it didn't really effect my decision making.

The thyroid suppressing medication was the other option available to me and at the time I decided against it. If I was making the decision today I would probably still decide against it, for my situation. Basically (my very basic understanding of it) is that you take these medications long-term, (like for two years), and after that time they take you off it and try to work out if it has got your body to go back to normal thyroid function. If it does, then they monitor you closely for a while, and if it doesn't then you have the option of taking RAI or trying to take the meds for another period of time.

The reasons I chose against this option was because I was 29 years old and I didn't want to be sitting there in the Doctor's office making the same decisions in 2-2.5 years time, I wanted to have a permanent fix to my illness and I wanted to be able to get on with my life.

My thyroid was completely obliterated by the radiation dosage (25 mci) I received. At the time we thought that was a good thing, but I later realised that it would have been better to have only lost a partial function of my thyroid. Since I now have no thyroid function at all. It made getting my hormone levels regulated quite a challenge and it took a lot longer than my specialists and Doctor had predicted.

Usually they say that they expect to have the hormones regulated within 3-6 months, mine took a little over 9 months. I was diagnosed in June 2009 and my first 'regulated' blood test where I was feeling more normal wasn't until April 2010.

Now I take two thyroid supplements every single day and will do so for the rest of my life, I take synthroid (which replaces the T4) and cytomel (which replaces the T3). I feel so much better, it's amazing that I now have almost full control over this illness and have the ability to life a full life again.

There was many times through my treatment and trying to get regulated when I felt like I was never going to have a normal life again, and I thought I would never get out of the hard times we were going through, but with good doctors and with being knowledgeable about my illness and listening to my body we got there. I had great support from my wonderful husband and our family and friends too - I couldn't have done it without them.

I'm not sure if this really answers the questions you had, and I have met many people who went through graves disease and didn't have the long period or the extreme highs & lows I had after the RAI treatment. Every person has a different experience, but there are for sure many similarities.

The one thing I would definitely recommend is research. If you are interested I have some book recommendations that really helped me, I got them from the library so I'm sure they're readily available (we don't have the greatest library). Also, make sure to take note of the things that help YOU feel better. They might not be the same as things that helped others but if they make a difference to how you feel then it's important. There are certain foods that interfere with thyroid medications and thyroid function, so once you start taking those make sure that you do give it the hour before eating anything, and avoid the foods that will counteract the medications. It's worth it.

Since you have an overactive thyroid right now I'd cut out as much Iodine as possible. Don't cut it out completely, you don't have to, but it will certainly help if you can limit what you take in. Get plain salt instead of Iodised salt, try and avoid things that are really red in colour, like sweets and candy - usually they have the dye called red #40 and that has a lot of iodine in it... I have quote a few Low Iodine recipes that I used for a long time while I was hyperthyroid to help, I'd be happy to share those with you if you'd like.

The other thing I would really recommend is finding a Doctor that will listen to you. This made a big difference to me and is what helped me get through the hardest times of my treatment. My Doctor knew that I was going through some very large changes chemically within my body and that it would effect me differently on almost a daily basis. He listened to me, he answered my questions and he followed through with my requests.

I hope I didn't overwhelm or overload you with information, that's the last thing I would want to do.

Ask yourself a couple of questions... Do you know how long you have had this illness? Can you think back to when the symptoms started? Is there anyone else in your family with a history of auto-immune illness or thyroid issues?

Feel free to vent or ask questions, bounce ideas back and forth if you'd like too. In the early stages of my diagnosis and treatment this is the one thing I wished I'd had.