[Shaunak]

#1060147

Hi everyone. I am new to this forum. A little history on me. I am 38 years old. My husband and I were trying to get pregnant spring of 2011. In August my OBGYN ran a TSH which came back around a 3 and said it was better to be between a 1-2 to conceive so I was put on a low dose of thyroxine. In October my TSH was 1.2. After that it was not really monitored until in February 2012 when the fertility specialist ran a thyroid panel my TSH was <.005. Of course they would not treat me until I saw an endocrinologist who did a work up and diagnosed me with Graves Disease. He took me off the medication and my levels evened out and I was declared "in remission". I got pregnant a couple of months later through IVF. Even though I told my OBGYN about the Graves they only ran a TSH a couple of times at my insistence all of which came back normal. I had a beautiful healthy girl April 10th.
After excessive hair loss post-pregnancy I asked my Dr to test my thyroid which came back with a low TSH (<.008). The new endocrinologist (the other had since retired) didn't believe I had Graves because I showed very little symptoms and ran her own bloodwork/ultrasound. It came back positive for Graves and I have 4-5 nodules, one of which is over 2cm. I have the biopsy on Monday which I am really nervous about. I would like to have another baby before I turn 40 so we were going to go back to the fertility Dr in October. I am overwhelmed by the choices I have. Radiation is not an option, I am terrified of taking medication while pregnant and surgery seems extreme! I really don't know what to do. I want try to control my diet/exercise for a bit and see if I go into remission again. Once I'm past the 1st trimester I will go on medication. My Graves is so mild I have almost no symptoms but I understand it will increase the chance of miscarriage. I just think if I did it last year, I can do it again. And then get treated with whatever they want.
Sorry for the long post. I really needed a place to vent where people might understand what I’m going through. Thoughts?

[Ski]

#1180746

Hi Shaunak,

Welcome, we’re glad you found us, and congratulations on your beautiful baby!

You’ll know much more after the biopsy, I’m sure that will help you make your decision.

Graves’ Disease doesn’t typically include nodules that “stand out” individually, so there’s a chance that your hyperthyroidism is not necessarily caused by Graves’. Even so, you’d need to be treated for levels that are out of whack, but the options could be slightly different.

If it IS Graves’, then you really need to manage things by your blood levels, not by your overt symptoms. If your blood levels of thyroid hormone are off, you must do something that will correct it, or your body will suffer. Figuring out which of your options is “less awful” to you MAY turn out to be the decision you need to make, but having no treatment while your levels are abnormal is simply dangerous.

And thinking about a second pregnancy, you must be healthy before your body can support “building” another human, there’s no question about that.

Let us know what you find out, and feel free to come back and ask more questions!

[snelsen]

#1180747

HI, I think you thinking is logical and rational. TAke it one step at a time. I suggest you ask and beg for them to contact you with the results as fast as possible. I know for a fact that the path labs can get these done rather quickly, and sometimes the docs sit on the results. Tell him to CALL you if you have to wait for an appt

Lots and lots of people have nodules. Good for YOU insisting on the labs!!! smart girl.

As was mentioned, it is possible that you may not have Graves, that it the nodules that are cranking out extra hormone.

Ski had excellent points for you to consider, as she always does.

Just a thought if it becomes relevant. I chose surgery, great choice, was in the baby making business at that time, went super well, and I’d chose it again in a heartbeat. If you have Graves, you already realize that RAI is not the choice you want, since you are thinking of getting pregnant again. That is a really long haul in the waiting category.
We will all be looking forward to hearing your next report. So glad you wrote.
Shirley

[Shaunak]

#1180748

I was under the impression I did have Graves because the TSI level came back positive. Is there a chance that it is not Graves but the nodules overproducing?
I had the biopsy today and the Dr saw 3 suspicious nodules that she took samples from (that was 11 needles in the neck…ouch!!!) She kept saying things to the technician like “this thyroid is a mess” and its “very irregular”. There were many nodules but she took samples from the three largest. Apparently the biggest is 2.1 cm and that is huge. I wont get the results back until 9/17 because they said it will take 2 weeks and the Dr will be out of town until the 17th. On the plus side she said I can hold off on any meds until then because my levels weren’t terrible. If I end up needing surgery I don’t want to take meds that I don’t need.

[Kimberly]

#1180749

Hello – Yes, the TSI is generally considered diagnostic for Graves’…I don’t think that was mentioned in your initial post.

The good news is that the vast majority of nodules are benign…your doc is being extra cautious to ensure that if there *is* an issue, it’s caught early.

Hopefully, you will get a positive report back, but just in case, ThyCa and Light of Light Foundation are two wonderful resources for thyroid cancer.

Also, perhaps you can ask if there is another doc available who can interpret the tests? That is definitely a long wait until 9/17.

Wishing you all the best!

[Shaunak]

#1180750

So I got the results back yesterday and all 3 nodules were benign. Which is good news. But I started on the PTU yesterday which I am less than thrilled about. I just hate taking medication in general.
I started the medication last night (50mg 2x day) and this morning I had an episode with my vision. I had a crescent shaped “floater” in the center of my vision that lasted about an hour. It gradually grew larger into my peripheral vision then disappeared. I’ve had a headache ever since the incident. I put a call into my Dr. but have not heard back yet. I am assuming its not a big deal or they would have gotten back to me by now.

[Raspberry]

#1180751

Hi Shaunak, you likely experienced what’s called an ocular migraine. I got some of those too when my thyroid levels were initially falling on ATD’s. It’s harmless, but just don’t try to drive while it’s going on because it can expand to fill up a lot of the visual field. I’m glad your results were benign!

[snelsen]

#1180752

Agree. You reported it, and most likely it is an isolated, or infrequent event.
Shirley

[Shaunak]

#1180753

Thank you for the kind words. It was kind of a scary day. The dr finally called after 5pm. She had never heard of this side effect to the medication. She told me to stop the meds for a few days and start again on Friday. If this happens again we may need to try another approach.

[Author]

Posts