Viewing 11 posts - 1 through 11 (of 11 total)
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  • SamanthaHuneycutt
    Post count: 2

    Hello all!
    My name is Samantha Huneycutt and I am currently 21 years old and a college student at East Carolina University studying Public Health and Sociology! I was diagnosed with Graves Disease at the ripe age of 15, after waking up one morning with a heart rate of 163! It was particularly hard because I was a track and field runner and hurdler, so workouts every day would skyrocket my heart rate into the lower 200’s. I was on methimazole for a number of years, and because it slowed my metabolism but I was still consuming the same amount of food as I was when I had a fast metabolism, I gained close to 40 pounds in less than 2 months. I kept fluctuating in and out of remission until the summer of 2018. I received the radioactive iodine treatment and have been on levothyroxine ever since! In that time I raised over $500 for the GDATF for a portion of my senior high school project. I’m currently on 175 MCG (.175 MG) of my medication, and it’s up so high because I am awful at remembering to take it so my lab results would always come out low. My family has a history of hypothyroidism, but it’s hard to pinpoint if mine was caused by genetics because mine was originally hyper and also because the area I live in, Mooresville North Carolina has clusters of thyroid disease and thyroid cancer. Just thought I’d share my story because I was particularly young to get diagnosed with a thyroid disease. I look forward to reading everyone’s comments!

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – I remember when you were doing your senior project…time flies! Thanks so much for your support and for sharing your story. Hope that you are doing OK with school with all the closures.

    Being consistent with meds is so key. I got into a routine where I put the meds out and pour a glass of water before I go to bed at night. Then I see the water & that’s a reminder to take the meds. :) A phone reminder might also be helpful.

    Take care!

    Big_goit
    Post count: 11

    Hey! I’m a 17 year old from NC who was diagnosed with GD least year at age 16 lol so we have a couple things in common! I got a “total” thyroidectomy in August 2019 but a large portion of my thyroid grew back in less than 6 months so I’m now in the process of scheduling radioactive iodine treatment for the near future.

    It’s awesome that you did your senior project on thyroid related stuff! Would you care to share more about your experience with radioactive iodine? How did you feel in the days after treatment? Good luck at East Carolina University!

    Reah
    Post count: 1

    Hi, I am Reah from the Philippines. =)
    Glad to have discovered this website today and I thought I’d register and introduce myself.
    I am 41, diagnosed with hyperthyroidism seven years ago and have been in Methimazole ever since. I was only told I have Graves’ this year. I will only be having my RAI tomorrow and I look forward on how this will change my life, hopefully for the better. :)
    Glad to read stories from other people.
    Take care, everyone.

    Kimberly
    Online Facilitator
    Post count: 4262

    Welcome, Reah! You might also check out our Facebook group (you can search for GDATF) or our social wall at oneGRAVESvoice.com if you’d like to hear from other patients, as this forum is a little more quiet than the other two.

    Hope all goes well!

    yorkv01
    Post count: 8

    Diagnosed at the age of 12 (39yrs ago) with Graves Disease and subsequently Graves Eye disease. I was given radiation to drink twice as the first dose did not work. After the successful treatment of this goiter, I was put on Armour thyroid. My levels were normal for approx 34 years until Armour changed the fillers in their product and I started having issues. My current doctor put me on Levothyroxin and it did normalize my levels for a year or so but now my TSH has dropped to 0.05 and I don’t feel well. My daughter has suggested a thyroid medicine made at a pharmacy that makes compound formulas. It’s called Naturesthroid. Any suggestions as to what might be going on with me after all these years. Using this compound formula? Possibly low dose iodine treatments?

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – Hopefully, you have followup labs scheduled to see if the issue persists. TSH can be an early warning sign that T3 and T4 are headed out of balance, even if they are still in the “normal” range.

    It’s not uncommon to need a tweak in dosing as we age – plus, the reformulation probably made things extra challenging. It would also be worth it to report these findings to the pharmacy in case others are having the same issue.

    Did your doctor provide any guidance on the nature-throid? It’s a desiccated product like Armour. He or she might have concerns about starting you on a product with T3 (which is the more powerful and active form of thyroid hormone) with your TSH already suppressed.

    yorkv01
    Post count: 8

    Thanks for your reply. My doctor did switch me over approx 5 days ago. One of the things I found in researching Levothyroxin and Armour are that both use a cornstarch filler whereas the Naturesthroid does not and is the best hypoallergenic option. Graves Disease is associated with an autoimmune issue so hopefully this does the trick. I don’t like to play around with my thyroid after going thru what I did so many years ago. I am currently looking for an Endocrinologist that has extensive knowledge and interest. My old doctor has long ago retired and I miss his brilliance.

    SamanthaHuneycutt
    Post count: 2
    Big_goit wrote:
    Hey! I’m a 17 year old from NC who was diagnosed with GD least year at age 16 lol so we have a couple things in common! I got a “total” thyroidectomy in August 2019 but a large portion of my thyroid grew back in less than 6 months so I’m now in the process of scheduling radioactive iodine treatment for the near future.
    It’s awesome that you did your senior project on thyroid related stuff! Would you care to share more about your experience with radioactive iodine? How did you feel in the days after treatment? Good luck at East Carolina University!

    Hey everyone! It’s been a while since I’ve posted in April! I’ve been applying to graduate schools for epidemiology and global communicable disease. I thought I would elaborate on the above question about my radioactive iodine treatment! When I got it done following my freshman year of college, I did not immediately feel any different. I stayed in my room for a few days in “quarantine”; kind of ironic now with Covid-19. Still to this day, I hardly feel any different than I did before. I think potentially the reason I didn’t feel as much of a shift in my overall health from the iodine treatment was because my body had become accustomed to fluctuating levels beforehand (in and out of remission from medication to no medication over 2 years). Following the treatment a few months later, I was able to tell my medication (.175mg) was too high (because I was awful at remembering to take it, so lab results would come back low) so when I would be consistent with taking it, I would have hand tremors and a fast heart rate. My symptoms following treatment were all due to my forgetfulness, not due to the actual iodine itself. Since my post in April, I have gotten my levothyroxine lowered to .150mg and become very consistent with taking it and my labs came back perfect. I have now “graduated” from my pediatric endocrinologist and my primary care physician will be doing my blood work and labs from now on. I hope everyone has a wonderful holiday season!

    Kimberly
    Online Facilitator
    Post count: 4262

    Thanks for checking in with an update – wishing you a wonderful holiday season as well!

    yorkv01
    Post count: 8

    That’s Great Samantha. Good Luck with school!

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