[AmyG]

#1059163

Hi,
Yesterday my endocrinologist told me I have Grave’s Disease. I asked a lot of questions and listened to the treatment options but didn’t really process everything until I had to get some baseline bloodwork. I realized this will be my norm – getting bloodwork done to monitor things – and just cried. Called my parents and told them; cried some more. I’m really scared but hopeful that there is a name for what I’ve been feeling and that there is a TREATMENT. I pick up methimazole today. I’m nervous about taking it because of the side effects – I mean the odds are in my favor in that only 2% of women get Graves (lucky me? ) How long does it take to feel normal? How long do remissions last if I’m lucky enough to have one?

I’m so glad my family found this site for me. It will be nice to receive and give support when battling this fight against my body. Thank you.

[gatorgirly]

#1172645

What’s even better than your family finding this site is the fact that they sought out this site…for you! Having a good support system is so important during this time. My parents wanted to fly down to FL from MA when I was diagnosed. I didn’t let them (they are divorced and I couldn’t pick just one to come and if they both came, my stress levels would’ve been through the roof!) but they did their own research, learned a lot, got their own thyroid levels checked, asked their respective families about thyroid disease in the family (there is none, just me), and have followed my 2.5-year journey with Graves very closely.

The bloodwork thing is no sweat. My previous endocrinologist preferred I get my labs done first thing in the morning on an empty stomach (except for my meds), so I did that every six weeks on my way into the office and treated myself to Starbucks afterward. I made it into something I looked forward to, instead of an inconvenience.

I’ve been on here since the day I was released from the hospital after my diagnosis – I had a thyroid storm – and it’s been so helpful and informative. If you can afford it, you should definitely try to get out to the conference this fall. I wish I had gone earlier in my Graves journey but this year will be my first.

[Kimberly]

#1172646

@gatorgirly – Looking forward to seeing you at the conference! It’s definitely a great opportunity to learn as well as to connect with fellow patients.

@AmyG – I’m sorry to hear about your diagnosis, but am glad that you (and your family) found us! Every patient is different, so there is no set course for when you will start to feel more like yourself. I started methimazole in mid-October, and by the first of the year, I was settling in to more of a “new normal”.

Every patient is different with remission as well. Some will relapse within a year. One of our facilitators, James, has enjoyed 9+ years of remission after a couple of go-rounds with the meds.

Keep in mind that the American Thyroid Association and American Association of Clinical Endocrinologists released some guidance last year that recommends testing antibody levels (TRAb) prior to withdrawing Anti-Thyroid Drugs, as normal levels indicate a better chance at remission. If you withdraw the ATDs while your antibodies are still raging, there is an increased likelihood that you could become hypER again.

Please keep us posted on how you are doing!

[VanIsleGal]

#1172647

I remember being diagnosed! I had just met a new guy that I wanted to date! He found out I had Grave’s and knew it could make me crazy, so he dumped me! I don’t live near any family, so I was on my own. I have Grave’s for a 3rd time now and will have the surgery soon.

Hope you have a speedy recovery!

[adenure]

#1172648

Hi & welcome!

I understand your fears; I was there not too long ago. I too started on methimazole; it is a good place to start. It took me 2 weeks to see my symptoms subside some. Yes, the odds are in your favor that the methimazole will work just fine and not cause you any issues. That being said, I would ask to get a liver panel done along with your thyroid bloodwork just to make sure. I got to be the lucky 1% who had liver issues bc of the methimazole & had to stop taking it (7 weeks into treatment- I was on 5mg. a day). I didn’t have any of the symptoms like fever, dark urine, sore throat or any of that), but my liver was taking a beating all the same. So, definitely ask about being tested just for reassurance. The methimazole did get my thyroid in check though so that I could get the surgery though (I had surgery 2 weeks ago to remove my thyroid & am on Synthroid now). So, it did a good job as far as my thyroid went.

It will be okay; everyone here on the board is really great too. Good luck to you!

Alexis

[AmyG]

#1172649

@everyone Thanks for the words of encouragement. I started the methimazole yesterday. The only significant difference I see very early on is the less anxious feeling. It’s a small start to a large journey.

My doctor wants to see me in 6 weeks for liver panels & TSH/thyroid testing.

@gatorgirly – I live in San Diego. I’m definitely going to look into the conference since my costs will be low in comparison to out of towners.

You guys are the best…honestly.

[Carito71]

#1172650

Hello AmyG. I’m new here too … welcome to the forum. I haven’t been officially been told by my Dr. that I have Graves but my TSI was 237 and so I think I probably do.

I know how you are feeling. It is very scary but I keep getting reassured by many that I will get well

I have been taking the Methimazole since June 16th. As of right now, I don’t feel hot all of the time and I have started sleeping again (I had insomnia for about a week and 1/2). What dose are you on? They put me on 30 mg/day. It is kind of high but not the highest.

I wish you the very best and I’ll read you later.

By the way, I posted more details about my background in case you are interested in reading. You can call me Caro.

I’m going to go rest. I’m terribly tired.
Caro

[adenure]

#1172651

Hey AmyG! I live in San Diego too! Cool! Probably won’t be at the conference though; I have 4 little ones and our lives pretty much revolve around them I homeschool & they’re competitive gymnasts- so life is busy. It’s all good though- love my family!

Alexis

[Bobbi]

#1172652

AmyG: Don’t expect the drug (methimazole) to make you feel instantly better. The thyroid not only makes hormone, it also stores it for future needs. The drug will interfere with the production of “new” hormone, but won’t affect the stored supplies. Until they are used up, we typically don’t see much of a difference in how we feel. It usually takes a week or two for the real effects of the drug to start to be noticed.

[Author]

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