[susanf]

#1059176

Hello everyone! You all seem to be a good supportive group, I’m sure I found the right place.

After my thyroid uptake scan and blood tests, I was back at the Endo today and was diagnosed with Graves. It was total unexpected. I thought the result would come back as just nodules.

I am confused because my thyroid uptake came back within normal limits (6 hrs 13.5% and 24 hrs 22.1%). I “thought” Graves needed an increased uptake to be diagnosed. My TSI was 309 and the thyroid peroxidase antibodies (what is the abbreviation?) which I assume is why I was diagnosed with it.

The Endo also said I have a “bright stare”. I’m not sure exactly what that is. I don’t see a difference in my eyes. Honestly, I’m pretty sure he said the word “bright”, he did have an accent .

I opted for the RAI treatment next week. I did not like the sound of the side effects of liver problems and/or bone marrow issues with the anti thyroid meds, even if it is only a rare chance.

What options did you all choose for treatment? I would love to hear about your experiences. I know Graves is treatable, but actually being told you have a “disease” that is beyond your control is hard to swallow.

Looking forward to talking to you all!
Susan

[Bobbi]

#1172730

Hi, and welcome to our board.

The “bright stare” your doctor referred to may be a wide-eyed look that we often get when we are hyperthyroid. Some folks have this type of look without having Graves. But those of us who are hyperthyroid often get it because the upper eye lid muscles tighten in response to the thyroid levels. It typically goes away once our thyroid levels are returned to normal.

I think some folks refer to the thyroid peroxidase antibodies as TPO.

I chose RAI long ago, and it made me well again. Wishing you the same.

[Carito71]

#1172731

Hello Susan,

Welcome to the forum. I’m new here too and still learning a lot about Graves. You can call me Caro.

I was diagnosed with hyperthyroidism on June 8. Last Mond my primary Dr. told me I have Graves. I haven’t had a scan yet but my TSI is 237 and my TPOab is +. I think that is why she said it is Graves.

I had to go the ER on June 8 b/c of tachycardia. At the ER I was told I had hyperthyroidism. A week later a had an appt with an Endo. He wanted to lower my thyroid before doing a scan b/c he said that he was afraid that I would get a thyroid storm from the iodine. He said my BP was low (normal range though) and my heart rate too high (average 96). I trusted him and started the Rx Methimazole. I have been on it for 2 wks and 2 days. My lab #s are still the same and my FT4 is even a little bit higher . I will be seeing a new Endo next week. Along with Methimazole, I’m also taking Metoprolol. My HR stays in the 80s-90s since I’ve started taking the Metoprolol 2 days ago. I was taking Propranolol per the Endo but that would keep me up in the 100s b/c he did not want to increase my dose. I’m also able to sleep better and I’m not hot all of the time. I do feel fatigued all of the time and dizzy though. My primary Dr. has helped me with the tachycardia and she prescribed the Metoprolol.

We’ll see what the new Endo says next week. I would like a scan to see if my thyroid is acting like Graves. It is interesting how yours is acting normal but you have been diagnosed with Graves. I read before that the TPOab can be + with other autoimmune diseases …. like Celiac for example. The way the Endo explained it to me, for Graves, the thyroid would be over active all the way (you would see dots close together all over the thyroid when doing an iodine scan). I don’t know anything about the %s and what they mean though.

As for removal of my thyroid function, if my thyroid has to go, I’ll choose surgery. I, personally, Am afraid of the radiation.

I wish you the very best with the RAI. Please keep us posted.

Happy 4th,
Caro

[Kimberly]

#1172732

Hello – The TSI test is considered diagnostic for Graves’. In fact, many docs these days are skipping the uptake & scan test, unless antibody tests aren’t conclusive.

I personally chose Anti-Thyroid Drugs, which I have been taking for going on 5 years. Long-term ATD treatment is a little unconventional in the U.S., but I wanted to exhaust that option before making a permanent choice. If you check out the “Treatment Options” thread in the announcements section, you can find some great resources on the three treatment options.

Take care!

[catstuart7]

#1172733

Welcome Susan and sorry you’ve had to become a member of our club. It is hard to be diagnosed with such a disease. I went through a very difficult period when doing the research finding out that it had greater impacts than just the thyroid. I’m pursing the medication path with PTU. Part of why is that I of course hope for remission. Also I would like to be in a better place in my life to have surgery since that would be my choice if meds don’t work out. I have some TED (thyroid eye disease) and there is a risk RAI could make it worse, so if I did something permanent I’d go with surgery. I don’t think there are any perfect choices with Graves’ – every single one has potentially significant negatives and positives. Most important for you is that you feel really informed and good about the direction you choose.

[adenure]

#1172734

Hi Susan & Happy 4th!

Welcome! Yes, being diagnosed with Graves is a tough one to hear. I was diagnosed after having my 4th baby. I was diagnosed with a “95%” certainty of having Graves based on blood work alone. The outside chance of postpartum thyroiditis was there, so I got the scan eventually. The scan confirmed Graves and I drove home in tears. Just knowing for certain was so hard; I wanted to believe it would go away on its own (like thyroiditis does).

I did start with methimazole (ATD), but it was damaging my liver (I had a liver panel lab done 7 weeks into the meds. and it came back as not so good! I didn’t experience liver damage symptoms though- fortunately we caught it early & it reversed itself) On the plus side, the methimazole got my thyroid level balanced and I had surgery 2 1/2 weeks ago! RAI wasn’t an ideal option for me for various reasons (I’m breastfeeding, I’d have to wait 4 months if I weaned to get treated and it just didn’t feel like the right option for me). So, right now I’m on Synthroid and will get my labs done for that in another few weeks to see how my levels look. The surgery went well with no complications and I’m grateful that I did it.

It sounds like you’re not hyper right now (that’s my guess based on your uptake percentages); it sounded like you didn’t expect the diagnosis, so you’re probably not feeling symptoms or haven’t before. My guess is your endo won’t prescribe ATD’s if your thyroid levels are stable (did he/ she test your TSH, T4 & T3?) As a side note, if you decide to go ahead and treat the Graves with RAI or surgery, it’s important to have stable thyroid levels for surgery, and I believe it is ideal to have them stable before RAI as well (although I don’t think it is as important as it is for surgery). If you’re not hyper, is your doctor going to do a “wait and see” type of approach and test your thyroid levels every 2 months or so unless you feel hyper symptoms?

My TSI was 234 I think; the other antibody test was out of range too, not crazy out of range, but still high. My scan percentages were 19% & 34%.

Alexis

[adenure]

#1172735

I also had nodules on one side of my thyroid; there were benign.

Alexis

[susanf]

#1172736

Thanks for the welcome Bobbi! I keep looking in the mirror and to me I don’t look any different…I wonder what he saw?

[susanf]

#1172737

Hello Alexis!

Thanks for sharing your story. It sure does help knowing I’m not the only one that feels bad about my diagnosis. Sometimes I think I’m exaggerating. I hope your levels are good in a few weeks, wishing you luck.

Actually I am hyper. Although my uptake was fine, my TSH 2 months ago was undetectable at 0.01 and last week it went up to 0.02 lol.

I didn’t expect the diagnosis because what I thought I knew about Graves I was wrong. I assumed the uptake had to be increased to diagnosis Graves. See what happens when someone ventures to Google without a doctor? lol. I am having plenty of symptoms. It was actually my OB/GYN who discovered it having had and endometrial biopsy and u/s for bad periods. Kudos to her! I’ve had night sweats for a few years now. I’ve had a bad memory and just being a scatter brain. I lose my hair quite a bit and often. Heart palpitations. Irritability. Bad periods. And the worst is hunger! So much, I just thought I was getting older and really ignored most of the symptoms.

Thanks again!

adenure wrote:

Hi Susan & Happy 4th!

Welcome! Yes, being diagnosed with Graves is a tough one to hear. I was diagnosed after having my 4th baby. I was diagnosed with a “95%” certainty of having Graves based on blood work alone. The outside chance of postpartum thyroiditis was there, so I got the scan eventually. The scan confirmed Graves and I drove home in tears. Just knowing for certain was so hard; I wanted to believe it would go away on its own (like thyroiditis does).

I did start with methimazole (ATD), but it was damaging my liver (I had a liver panel lab done 7 weeks into the meds. and it came back as not so good! I didn’t experience liver damage symptoms though- fortunately we caught it early & it reversed itself) On the plus side, the methimazole got my thyroid level balanced and I had surgery 2 1/2 weeks ago! RAI wasn’t an ideal option for me for various reasons (I’m breastfeeding, I’d have to wait 4 months if I weaned to get treated and it just didn’t feel like the right option for me). So, right now I’m on Synthroid and will get my labs done for that in another few weeks to see how my levels look. The surgery went well with no complications and I’m grateful that I did it.

It sounds like you’re not hyper right now (that’s my guess based on your uptake percentages); it sounded like you didn’t expect the diagnosis, so you’re probably not feeling symptoms or haven’t before. My guess is your endo won’t prescribe ATD’s if your thyroid levels are stable (did he/ she test your TSH, T4 & T3?) As a side note, if you decide to go ahead and treat the Graves with RAI or surgery, it’s important to have stable thyroid levels for surgery, and I believe it is ideal to have them stable before RAI as well (although I don’t think it is as important as it is for surgery). If you’re not hyper, is your doctor going to do a “wait and see” type of approach and test your thyroid levels every 2 months or so unless you feel hyper symptoms?

My TSI was 234 I think; the other antibody test was out of range too, not crazy out of range, but still high. My scan percentages were 19% & 34%.

Alexis

[susanf]

#1172738

Hi Cat!

I’m not sure I will ever feel comfortable with my decision. I’ve never been one to let rare odds stand in my way. But when I heard about potential liver problems and bone marrow problems, I immediately thought about my son. I can’t afford to be sick. I just had a gut feeling that I would be that slim chance. Maybe it’s not right to listen to my gut, maybe it is. I guess I’ll only know once I’ve seen the affects of my treatment. All I know is I want to start feeling better soon.

[susanf]

#1172739

Hi Kimberly!

Thanks for the info about the uptake scans, that is very interesting. I will definitely check out that message board, thanks so much!

Are you have regular blood work done to check your liver? How long do you think you will need to be on antithyroid meds?

[catstuart7]

#1172740

Susan, you are so right about the hunger! It was one of my primary symptoms before I got diagnosed and I didn’t see it. I remember eating so much and so many things and I couldn’t ever feel full. Sadly my metabolism didn’t keep up and I gained weight – hoping to lose weight now that they crazy hunger is under control.

[Kimberly]

#1172741

Hello – Yes, I have liver function tests every time I have my thyroid levels checked (about every 3 months, give or take). There is actually some controversy over whether this testing can catch early liver issues. Some docs think that the meds should be stopped with the onset of suspicious symptoms (fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes), rather than doing regular testing. However, my own doc does this to err on the side of caution.

As for a timetable, I’m way past the U.S.-based recommendations of 12-18 months. (Longer-term use is much more common in Europe and Japan). My plan right now is to continue on the meds until I achieve remission or until complications force me to choose one of the other options.

Take care!

[naumanb]

#1172742

Susan,

The beginnings after diagnosis can be some of the most difficult. I know it has been hard for me so far. I have that “bright stare” as well. I am on Methimazole and my Endo said that once I get everything balanced out that should go back to normal. Yours will probably do so after RAI treatment. Let me know how all that goes, I have been debating it because I have been getting frustrated with all the changes in my medication dosage. I know it takes a while to balance everything out but it does get frustrating. Hope all goes well with you.

[Author]

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