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in reply to: On ATD two years-plus? #1183803

Thanks for the clarification Kimberly.

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in reply to: On ATD two years-plus? #1183801

hockey_coach wrote:

My story on Tapazole for 6 years.

https://www.gdatf.org/forum/topic/42723/

Thanks for sharing your story. I was on mmi for 6 years and all signs point to me going into remission. Working with my Endo, I stopped mmi the end of this past year (I was only taking 1.25mg daily, then weaned off), and my thyroid numbers are good and I feel great.

Like many of us, I’ve come a long way and this forum was very helpful getting me through the early tough years. I’m happy with my choice to stay on mmi long term, because it worked out for me. Kimberly mentioned that being off meds for 15 months, would indicate remission. So time will tell.

Continued success!
James

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in reply to: Share your Success Story! #1183874

Thanks for sharing Carrie- sounds like a fantastic diet and fitness plan.

James

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in reply to: Share your Success Story! #1183872

Hi Carrie,

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?

Best,
James

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in reply to: On ATD two years-plus? #1183781

Flora,

Congrats on getting back to “you”. Continued good health!

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in reply to: On ATD two years-plus? #1183778

Great advice Kimberly. I’m also sensitive to change in meds. I’m taking 2.5 mgs of mmi daily and June will be 3 years for me. Last year, my doctor wanted me to attempt taking 2.5 every other day and I could tell the difference and went back to daily.

Currently, all of my levels are mid range and I feel fine…I could probably try to reduce again, but don’t want to rock the boat just yet. I recently checked the TSI, which was much improved since 3 years ago (when I was first diagnosed), but it’s still slightly out of range on the high side.

@scanders- I agree with Kimberly- if your TSI is in range, that’ll be a good indicator if you’re ready to completely come off of meds. If your doctor won’t run a TSI, PrivateMD now offers the test.

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in reply to: On ATD two years-plus? #1183773

Thanks Flora…and I agree…slow and steady is the way to go. Back in September, my Endo wanted me to try 2.5 every other day, but my body didn’t like that…so I went back to 2.5 mmi daily. After meeting with my Endo in Jan, we decided to alternate between 2.5 and 1.5 (around 17.5/week to 14.5/week). So far, so good…the good thing is, my Endo allows me to take my time…and not rush.

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in reply to: On ATD two years-plus? #1183771

Hi Flora,

Thanks for the update. Could you remind me how long you’ve been on atd? It appears that many who have been on an atd for a while, may eventually go hypo. In your situation, I hope you’ve simply moved into remission and just need to stop atd.

June 1st will be three years I’ve taken atd. I’m on a low dose and not sure when I’ll try to wean off…my thyroid levels have been stable within range.

Best,
James

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in reply to: Men With Graves’ and TED #1184001

Thanks for the update Andy. Fortunately, I currently have a mild case of TED in the right eye. I was diagnosed with Graves in May 2013 and noticed some eyelid swelling over right eye in January 2014. I’m hoping my TED has burned itself out, or close to being burned out as they say.

The swelling has gone down, but my recent CT scan still showed some muscle swelling in back of eye, that pushed eye out about 3 mm, but not noticeable (I can tell the difference when staring in mirror). If that’s the worst my eye gets, I’ll be happy…I have no double vision, no problem closing eyelid and optic nerve looks good…but it sounds pretty scary that your TED reactivated several years later. My dad is 87 and had rai over 30 years ago…he takes synthroid and has no noticeable issues with TED.

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in reply to: Men With Graves’ and TED #1183999

aggets wrote:

Hi

unfortunately i have permanent vision loss in my left eye hoping the same thing doesn’t happen to my right eye.

Thanks Andy

Hi Andy,

What caused your vision loss?

Thanks,
James

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in reply to: Men With Graves’ and TED #1183998

aggets wrote:

Hi

unfortunately i have permanent vision loss in my left eye hoping the same thing doesn’t happen to my right eye.

Thanks Andy

Hi Andy,

What caused your vision loss?

Thanks,
James

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in reply to: On ATD two years-plus? #1183755

Thanks for the update Kimberly. Congrats being off meds and I hope your TED gets better. I have mild TED…my right eye has a little swelling, but I hope that’s as worse as it gets. I’m a male that doesn’t smoke and won’t go the RAI route, so maybe there’s a chance the TED stays mild.

My dad had RAI done over 30 years ago…he’s now 87 and his graves has been under control for years (on synthroid) with no major issue with TED.

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in reply to: On ATD two years-plus? #1183752

duplicate

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in reply to: On ATD two years-plus? #1183751

Thanks Kimberly/Flora! My Doc is fine with just an AM dose, but I was just curious if anyone split the daily dose between AM/PM (e.g. 1.25 mg in morning and 1.25 mg in evening) and if they felt a difference.

Kimberly- I’ve followed your posts for a few years…so you’re currently off mmi? Are you in remission? Has your TED subsided?

Thanks,
James

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in reply to: On ATD two years-plus? #1183747

Hi All,

I’ve been on mmi for 2.5 years. I’ve been on 2.5 mg for the past year and was doing well at that dose, but in September, my Endo felt I could go 2.5 mg every other day. Unfortunately, that change seemed to rock the boat and trigger some symptoms, so I went back to 2.5 mg every day. I’ll just try to reduce again at a later time. Does anyone see a benefit in splitting daily dose…does it matter?

Nice thread and very informative…let’s keep each other posted with updates.

James

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