# Recently diagnosed with Grave's Disease



## morganb (Oct 30, 2011)

While being treated for migraines at a specialty clinic, my blood work came back abnormal. I had been on Bystolic (a beta-blocker for my migraines) and when I came off of that medication, I experienced hyperthyroidism symptoms. Within a matter of days I started experiencing heart palpitations and high pulse, extreme anxiety, insomnia, and many others. With each passing day, a new symptom seemed to develop. After completing more tests (e.g., blood work, thyroid ultrasound, thyroid scan & uptake), I was diagnosed with Graves's disease. (It was tricky diagnosis because I was apart of the 10% who did not produce anti-bodies in the blood which is the typical indicator for Grave's disease). Here are the results of my most current blood work: T3 = 792 (normal range 230-420), T4 = 2.2 (normal range 0.8-1.8), and TSH = 0.02 (normal range 0.40-5.50). My doctor started me on Methmizole (30 mg daily) which I've been taking for the past 5 days. I've also been taking propranolol (60 mg daily) which has helped with the heart palpitations but not the anxiety. She encouraged me to think about radioactive iodine treatment or removing my thyroid due to my migraine complications.

Has anyone tried Methmizole as a treatment option? Has it worked and how long were you on it before experiencing relief? Based on my numbers, do you think it's worthwhile to try the Methmizole for awhile or do I need to pursue more aggressive treatments?

Any help/suggestions are greatly appreciated. This was a very unexpected diagnosis and I'm struggling to find the best treatment option for me.


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## Octavia (Aug 1, 2011)

morganb, welcome to the forum! I am sorry about your diagnosis, but it sounds like you are in good hands.

We do have some others here who take Methimazole, and I'm sure they'll be along to share their experiences and insights. In the meantime, you could read some existing threads about it by doing a search for Methimazole (be sure to spell it correctly, or you won't find much). What has your experience been with it so far?


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## webster2 (May 19, 2011)

Welcome, MorganB!

I have heard of people staying on methimazole for 18 months, or so but it is hard on the liver. From what I understand, it is not a long term treatment option. I am glad your doctors were able to diagnose without the antibodies present.

I think you will find a lot of info here on RAI and surgery for Graves treatment. I chose surgery, even before I knew I had cancer, because RAI sometimes needs more than one application. Our Andros had to have it 3 times. Plus, I have a young grandson and work around small children and pregnant ladies.

Good luck to you! I am very glad you found our community, & have a good medical team.


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## tespad (Oct 30, 2011)

I to was also just diagnosed with graves disease last week im taking methimazole 30 ml a day and atenalol for blood pressure 10 ml in 8 weeks they want to check my levels and see where im at then i guess its rai or sugery im thinking i will do the rai sounds like a better idea than surgery but idk .. has anyone had a bad experience with rai?


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## Andros (Aug 26, 2009)

morganb said:


> While being treated for migraines at a specialty clinic, my blood work came back abnormal. I had been on Bystolic (a beta-blocker for my migraines) and when I came off of that medication, I experienced hyperthyroidism symptoms. Within a matter of days I started experiencing heart palpitations and high pulse, extreme anxiety, insomnia, and many others. With each passing day, a new symptom seemed to develop. After completing more tests (e.g., blood work, thyroid ultrasound, thyroid scan & uptake), I was diagnosed with Graves's disease. (It was tricky diagnosis because I was apart of the 10% who did not produce anti-bodies in the blood which is the typical indicator for Grave's disease). Here are the results of my most current blood work: T3 = 792 (normal range 230-420), T4 = 2.2 (normal range 0.8-1.8), and TSH = 0.02 (normal range 0.40-5.50). My doctor started me on Methmizole (30 mg daily) which I've been taking for the past 5 days. I've also been taking propranolol (60 mg daily) which has helped with the heart palpitations but not the anxiety. She encouraged me to think about radioactive iodine treatment or removing my thyroid due to my migraine complications.
> 
> Has anyone tried Methmizole as a treatment option? Has it worked and how long were you on it before experiencing relief? Based on my numbers, do you think it's worthwhile to try the Methmizole for awhile or do I need to pursue more aggressive treatments?
> 
> Any help/suggestions are greatly appreciated. This was a very unexpected diagnosis and I'm struggling to find the best treatment option for me.


Welcome and I am so sorry to hear this!!

What antibodies did you not produce? What was the rate of your uptake re the RAIU? (radioactive uptake scan) Do you have a read out of the RAIU. It would be interesting to know what comments the radiologist has made.

I was on Methimazole for 18 months, getting no where and sicker than ever. Most will tell you the same. Not all but a goodly portion of patients have opted out of anti-thyroid meds and went for RAI or surgery.

Surgery I believe is the best option mainly because the pathologist will go over the gland. Many have been surprised to find out they had cancer. Knowing or not knowing would determing the best treatment option; you see?

Hormones play a big role in migraines. I hope this is the answer for you in regards to proper medical intervention for the thyroid.


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## dlo1725 (Oct 30, 2011)

Hi:

Was diagnosed with hyper 3 months ago and doc put me on 20mg of Methimazole. My T3 and T4 readings were almost double the norm until 1.5 months ago when I got results from my blood test. T3 and T4 are now normal.

The pro's of the medication are that my heart palpitations are gone. I am sleeping like a rock for the first time in years. I have more energy and anxiety and confusion have diminished dramatically.

The cons of the medication are that I can no longer eat large quantities of my favorite foods without gaining a pound (the only pro to having hyper). Rumor has it that treating my thyroid with medication may now have caused thyroid disease in my eyes. My eyelids have been swollen for a month and are irritated and red. Off to the eye doctor tomorrow to find out if I have TED/GED.


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## webster2 (May 19, 2011)

Hi & welcome! I don't think methimazole is not a long term solution, just to get one stabilized. Sorry about the weight gain & eye disease. I hope your news will be good tomorrow. Is your doctor hoping for remission with Graves?


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## dlo1725 (Oct 30, 2011)

My doctor did explain that methimazole is not a long term solution. I am extremely nervous just thinking about my other options and hope I am one of the few lucky individuals that go into remission after 18 months on the meds. The weight gain is only minor however the potential eye disease disturbs me. Thanks for your concerns.

Please tell me about your experiences before and after thyroidectomy.


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## webster2 (May 19, 2011)

dlo1725 said:


> Please tell me about your experiences before and after thyroidectomy.


It seems like everyone's experience is different. I had been sick for a long time before the diagnosis. Every cold that came around, I would get; it would turn into pneumonia. I couldn't fight any virus at all. This went on for 2 years until I had a thyroid storm in May.

During this time, I had progressively gotten really nasty & mean, especially toward my husband. I would say it was a drastic change in personality. I felt anxious, tired, sweaty, heart racing. lethargic, unfocussed, etc. just a real mess. I also was not getting much sleep which added to my very short fuse. I was tired but suffered from insomnia. Mood swings were awful. I really thought I should have been committed, seriously.

My skin had strange lesions that were getting worse and adding locations on my body.

I would go to the GP almost every time I was sick, get an antibiotic and not really feel any better. A few times thyroid was mentioned but not pursued. Back then, I was of the belief "the doctor knows best". I didn't realize I would have to be an advocate for myself to get the care I needed, until I found this board. On a side note, many times menopause was brought up by the GP as the reason I was feeling this way.

I had the standard round of testing. The only notable thing, I think, was that long standing auto immune disease was noted on the U/S report. I get angry to think so much of this could have been avoided if thyroid testing was a priority.

Surgery was the only option I would consider. RAI scared the crap out of me. Plus, I had had the surgery before and knew it was no big deal. Most of the graves symptoms have gone away or greatly subsided. Even in the recovery room, the pressure of the lesions was gone, and I knew then things were going to improve. And, they have. I do live in fear the the mood swings will return. I haven't felt any anxiety or anything like that, so maybe we're good.

The most difficult thing, IMHO, is being patient waiting for the correct level of medication to be found. I am confident it will be.

I wish you the best of luck with your decision, and path to recovery.


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## Serenia (Sep 27, 2011)

Actually I have been taking MMI for the last 20 months and it is the ONLY thing keeping me stable. Every time I try to go off it (my endo keeps telling me that since My Free T3 and free T4 are in range, I should be eurythroid now) - and therefore should be able to stop the MMI. 
BUT my TRabs are still high and out of range - something he has no clue about obviously - but when I do try to stop the MMI, I get Horrible symptoms and have to go back on the MMI to feel better.

My family doctor told me today that he has another patient who has been taking MMI for 6 years. His liver is OK and so far my liver is also OK.

I am wondering if this thing about possible liver damage is just a ruse (excuse, lies) to get us off the MMI and opt for taking the RAI (or surgery) because the doctors & endos are too lazy to manage us long term....

I refuse to take the RAI and I am reluctant to have the surgery. If it is necessary, I will continue the MMI for as long as I need to.


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## webster2 (May 19, 2011)

I think if you keep track of your liver enzymes you probably would be ok. You may have a point about the willingness of doctors to manage this stuff for the long term. Wouldn't that be job security?!?


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## mum2bradley (Sep 27, 2010)

Hi there, I was diagnosed with Graves in Sept 2010. I tried methimazole for a while but I think I just had a terrible Endo and it didn't work for me. He was testing my blood weekly and changing my meds all the time. Couldn't find a dose that kept me level. I did RAI (12 Millicures) on March 17th. It wasn't anything major and I didn't have a lot of side effects from it. In April I had already gone Hypo and I have been working on getting a good dose since then. My levels are perfect but I am still not feeling 100%.
Wish you all the best with your treatment.
Leanne.


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