hyperkMarch 24, 2016 at 9:28 pmPost count: 11
Long time, no post! I was diagnosed waaaaay back in February 2007. What a nightmare remembering those days. After 1 1/2 years of Methimazole at varying doses, and including a time on the block and replace therapy,the yo-yo’ing stopped, and I could start to feel human again. In the next several years, there were three attempts at remission, each time coming off a mere 2.5 mg does of methimazole, and each resulting in a rapid rise in Thyroid levels. For the last three years, after letting my Endocrinologist know that I was through with attempts at remission, my Thyroid levels have been rock stable (! I remain on a mere 2.5 mg Methimazole, and enjoy all my pre diagnosis outdoor activities (hiking, bicycling, xc skiing, and snowshoeing), am a mere 3 years away from retirement, and work the same job as I did pre diagnosis, but now part time. I still get down on myself when I can’t get out to enjoy time with friends at their level of fitness, but quickly pick myself back up to join them when I can! Best of luck to all of you.KhadijahJune 21, 2016 at 10:02 amPost count: 62
Hi! Long time no post as well!
I was diagnosed in 2012 and started on 30mg of methmizole. I gradually came down to 10 mg without incident then was stuck around 10 mg give or take for a couple years then gradually made it down to 5 mg and stayed there for a couple of years then finally made it to 2.5 and also hung around for a year or so. Then my endo started talking about remission and going off it completely. I kept coming up with excuses that I was too stressed and it was risky to go off to zero. He let me stay but finally told me to STOP! That was a few months ago. So far so good.
I am trying to get my muscle tone back but that is probably due more to aging than the graves but over the years the graves definitely impacted my muscle tone and brain. As for my brain, again that is an aging issue, but over the years the graves absolutely caused brain fog to the point it was hard to learn anything quantitative. I am taking a computer programming series and I have completed 3 out of the five courses. That is something I could never have done while in the throes of graves.
I still want and need to go back to work, which is really hard after being home for five years. I am grateful that I was able to recover as well as take care of my child during the horrific graves spell. However, I do fear that work is something that could trigger a relapse. So, that is my next hurdle, finding a job.
But, overall I feel pretty good. Just grateful I made it through and I now know the symptoms should I start to spiral again.Momof5August 3, 2016 at 2:18 pmPost count: 118
Hi! I was diagnosed in March 2013 and am currently in remission! I had a lot of trouble in the beginning with doctors trying to push RAI and not being knowledgeable in how to treat GD well with ATD’s. After 4 endos and learning how to advocate for myself, I’m happy to say I am in remission. Just had my labs done after being off meds for a while year and my antibodies are still “normal” and at thr bottom of the ranges, and all my thyroid numbers are normal and at good ranges for ME. I’ve had plenty of checks along the way to make sure I was continuing on a good path, but that one year mark is music to my ears. Things have definitely changed since my diagnosis, but I think it made me more aware of my health than ever before.bigadAugust 3, 2016 at 9:08 pmPost count: 40
That’s good news. Continued success. I was diagnosed right after you- in May 2013. My Endo just okay’ed me going to 1.25 mg of mmi daily. I hope to eventually go into remission as well.
Do you mind sharing your diet…anything special?
JamesMomof5August 4, 2016 at 11:17 amPost count: 118
The biggest things I did was cut table salt out of our diet (family) a f switched to pink himalayan salt, not eat any super high iodine foods, and cut down on sugar intake. I’m not perfect, but had a pretty decent diet before this even happened. Just became more aware of what I was eating and how it made me feel. I don’t drink soda or coffee except on very rare occasions but I was already doing that before I was diagnosed.
I exercise 5-6 days a week, crossfit style and run and so obstacle course racing too. It took awhile to build all the muscle strength back up, and it was a slow process so be gentle with yourself. There are still days where my body doesn’t want to do anything and I try to listen as much as possible.
I also included magnesium, acetyl l carnitine, vitamin D and CLA supplements into my diet, and iron for a short time due to some low iron bloodwork.bigadAugust 4, 2016 at 1:03 pmPost count: 40
Thanks for sharing Carrie- sounds like a fantastic diet and fitness plan.
JamesKimberlyOnline FacilitatorAugust 5, 2016 at 10:19 amPost count: 4279
Thanks for sharing your success story, Carrie! Just a reminder for our other members to check with your own doc before adding any particular supplements to your own regimen. Some can be toxic in large doses, and others can interact with specific medications.mimi2point0January 3, 2017 at 2:10 pmPost count: 3
Hi there! Just wanted to share my success story which I hope helps you in your journey.
I was diagnosed back in July 2015. My doctor told me that my case was severe and that my chances of remission were very slim. When I was diagnosed I was on the brink of a thyroid storm. I weighed 118 lbs., (down from 130) lost a lot of hair. Didn’t sleep for about a month, had the worst hot flashes, and would find myself sitting in my car at 2 in the morning with the air conditioning in full blast. My heart rate was so fast and uncontrollable, that I honestly felt like I was going to die. Thankfully I did not have TED symptoms.
After I started Methimozole, it took about a couple of weeks to start feeling a bit normal again. I did not have a pleasant reaction, as the medicine caused me to feel extremely itchy, but it went away after a couple of weeks, and splitting the dose also helped as well. By December, I was totally within range and opted for RAI in January.
This was a very tough decision for me, but I felt like it was the right choice for me. On January 5th, it’ll be one year since RAI and I’m totally within all my ranges!
I exercise, do yoga, teach meditation, and regained my muscular build. The recovery was slow, but I did it! I did not gain weight, have no TED symptoms and I feel stronger than I ever did before!
I thank Graves for teaching me a very important lesson, and that’s not to take ANYTHING FOR GRANTED! Although it was a difficult one, I would not change this journey for anything. It made me so much stronger and appreciative of the little things in life! Because of it I became a yoga teacher and I’m now pursuing a more spiritual path.
I wish all of you much luck and success. Just be patient. This too shall pass. To quote my favorite author, “And once the storm is over, you won’t remember how you made it through. . . you won’t be the same person who walked in. That’s what this storm is all about.” – Haruki MurakamiKimberlyOnline FacilitatorJanuary 4, 2017 at 8:13 amPost count: 4279
Thanks for sharing your story! We had a presentation at our Boston conference in 2011 from a yoga instructor who felt that her practice was a great addition to conventional medical treatment as she went through the healing process.jtaps123January 7, 2017 at 1:18 pmPost count: 1
That is great! I did RAI back in August 2016 and haven’t felt normal since because we haven’t found the right dose for me yet. It’s been really rough and I just tell myself everyday that everything will get better. Are you taking any medication or any supplements at all? Thank you.floraSeptember 30, 2017 at 7:38 pmPost count: 133
It hasn’t been easy, and my journey surely hasn’t been short, but I too have wrestled this Graves thing to the ground – at last. As many of my Forum Friends know, I was diagnosed in March 2013, several stressful months after three very difficult life events happened, and all at the same time. During this devastating time, I struggled with Graves, and I believe my struggle was made harder and took longer to overcome, because of all that was happening. I mention this, so that anyone who has chosen ATD as treatment will not be discouraged by the length of time it has taken me to post my success story here. Many (most?) who choose this route recover much faster, as you will read in other posts under this thread – one ATD patient was running half-marathons again, after just a year.
Condensing my journey, with caring and supportive doctors, I spent three years on Tapazole trying to find my “just right” dose. Being sensitive to dose changes, I would feel pretty miserable after each one for the better part of a month, and even then, my most aggravating symptoms (that feeling of disconnection, the blues, plus musclo-skeletal/proximal muscle pain and stiffness) just wouldn’t let up. Sometime during the third year of chasing my Goldilocks Dose, we noticed that I seemed to be slipping hypO, which then meant a gradual process of tapering off Tapazole. (This may not happen happen to many ATD’ers, just not sure…) Once off Tapazole, and for about six months after, I was medication-free, in hopes that my thyroid function would keep me in normal ranges. But I had crossed over into hypO territory for sure, and in July last year, we began a low dose of my new best friend Synthroid. I say “new best friend”, because after one year of trying various doses, we have found my own just-right levels. And I feel fantastic – cheerful, happy-go-lucky again, and those pesky musclo-skeletal/proximal muscle pain and stiffness? they’re gone!
Yes, it was a long, long haul on the ATD trail for me, and yes, it took all the patience I could muster along the way. But, “I’m there” at last! You will get there, too, with the help of your your own doctor – this disease does require immediate medical attention in the beginning, and careful monitoring after that – a lot of effort, but we get there.
I’ll close with a heartfelt Thank You to Kimberly and to so many others here, for all their knowledge, encouragement and support, as well as with my wish for everyone, that no matter which treatment path you choose, you will find your very own sweet spot very soon, too – and lasting peace, health and happiness after that. It does happen.
– Forum Friend floraterppsiAugust 31, 2018 at 9:38 amPost count: 24
I didn’t believe it would happen to me as when I was diagnosed i had a huge TRABS value (around 50) but 5 years after I started taking mmi my TRABS is now negative!
So we are tapering off the mmi. My endo told me it was very rare to get remission with such low doseages of MMI (I was taking 2.5mg from monday to sunday).
Funny thing is I went to see her because I have been feeling terrible, with exhaustion and joint and muscle pain, but all my values were normal range. So she prescribed a more complete bloodwork.
I am still fatigued, though, but hopeful.summercloudDecember 31, 2018 at 1:34 pmPost count: 1
It feels weird to be posting my success story here as it’s maybe old news but I’m going to go for it anyway! Just for reference, I’m 36 now.
I was diagnosed with Grave’s Disease when I was 5 years old and had my thyroid taken out (throidectomy, right?) when I was 7. I remember having to take a really bitter pill in-between those–was that to try to get me into remission? My parents used to crush the pill up in chocolate syrup; I still can’t eat chocolate syrup on ice cream. There must have been some sort of emergency at age 7 because I was rushed to the hospital in an ambulance to have the surgery. My memories of that time of my life are pretty vague. And don’t look pictures of me–I was pretty sickly!
My major complication as a kid was that my scar healed very poorly and was “revised” (cut off and re-stitched). I still have an impressive scar on my neck.
I’ve never know what it’s like to have a thyroid or not be on levothyroxine. My dosage has been mostly-stable since I was a kid, but every so often it’s adjusted up or down a dosage. A few years ago when I went down from 175mg to 150mg I had two weeks of debilitating depression and couldn’t work. I remember the same thing from high school but had no idea it was a common side-effect. I feel like someone should have told me.
Recently I decided to try intermittent fasting and started skipping breakfast a few times a week. Ooops! As you all know, one has to be super consistent with the timing of levothyroxine and meals. I’m back to eating breakfast every day–my doctor said as long as I’m always consistent the dosage reflects those habits. I got her to agree that I can be retested in January.
I’ve got my opthamologist scheduled for Febuary (I hate those visits so much!); I’ve been lucky with my eyes so far and I hope that continues.
I wonder a lot about how much about “me” is the way it is because I have no thyroid. I get sick a lot; I have excema; I get dehydrated easily…are these related? No idea!
This feels sort of like bragging as all of my symptoms and troubles are so much less than everyone’s here. But I hope that someday everyone who posts can be stable as well!
Thank you for listening!KimberlyOnline FacilitatorDecember 31, 2018 at 6:14 pmPost count: 4279
Hello and welcome! Thanks for sharing your story. I wonder if you were given PTU as a child. There is actually a genetic trait that affects how your taste buds perceive PTU…those who find PTU to be bitter are called “supertasters”! Here’s an interesting read on the topic: https://www.scientificamerican.com/article/super-tasting-science-find-out-if-youre-a-supertaster/
Take care!terppsiNovember 11, 2021 at 3:21 amPost count: 24
I haven’t posted in a long time but I just wanted to say that after many years on methimazole, I have been in remission for 2 or 3 years now.
My Trabs is negative, though I still have a fair amount of antibodies in my bloodstream.
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