My Story - Personal Stories - Living with Graves Disease


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My Story

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#1 girl13swing


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Posted 15 December 2013 - 05:41 PM


About 10 years ago I went on disablity for general anxiety disorder. I was so bad off at the time I could barely eat for fear of vomiting and could not leave the house because of agoraphobia.

It was a struggle, but I mostly helped myself through that. I slowly forced myself to eat through hysterical tears, I slowly made myself go out until the agoraphobia was gone. About 7 years ago my dad became very ill, and my sister pretty much forced him, my mom, and I to move to Gainesville so she could help take care of him. The move was very traumatic for me. Smaller house, closer quarters, and with my anxiety I like my space. About a year ago I noticed my pulse seemed high and I would get out of breath easily. My periods also became much lighter but that didn't bother me. LOL

Then, a few months ago, I noticed I was losing weight without eating any less. I am now 15lbs lighter than my normal weight.

Anyway, a month ago I finally went to a psychiatrist for my mental health. He noticed my pulse was high and after talking with him a bit he found out my dad had hyperthyroidism around the age I am now. He ordered blood test and it showed my TSH levels were almost non-existent.

I then went to a GP and she ordered a RAIU scan which showed I have no nodules and no goiter, my entire thyroid was absorbing the iodine very quickly.

Then I was sent to an endocrinologist. She is very nice, and explained my two options, anti-thyroid meds or RAI ablation. Surgery was not an option.I have opted for the anti-thyroid meds, as she said I am a good candidate with no other health issues. I am supposed to take 30mg of methimazole daily, but I am terrified of the side effects, in particular nausea and vomiting. I have started taking the Klonopin my psychiatrist prescribed in the hopes it will calm me down enough to take it.

That is my story thus far.


#2 dsgreen5


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Posted 25 March 2014 - 09:35 AM

Hi, it looks like you are severely hypo now. I see that like my endo, there is no FT3 lab which is necessary for a complete picture. If your numbers continue to rise, you may need a much bigger reduction. 10mg could be still too much. Your TSH it's very high and looks like your thyroid is making its own antibodies again.


My labs are similar to your progression. My January 19th labs showed good FT3 & FT4, but TSH still low (.008). I lowered to 10mg till March 3rd labs which showed FT4 was low (hypo) but TSH was rising (1.86). Lowered again to 5mg. Two weeks later (March 17th), FT4 & FT3 are rising but still below range, TSH went from 1.86 to 4.86. This tells me that my thyroid is now working as my TSH is still rising with a lowered dose. I am currently testing remission to allow my FT3 & FT4 to come up to where they need to be and get a true picture of my antibodies. I'll lab again around April 17th.


Please let me know what your next set of labs say. Request that they do your FT3 as well. You may get pushed back on that but I would persevere ask for it. My GP does complete labs so even though I can't get my endo to accommodate it doesn't matter.

#3 Valarie


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Posted 24 September 2014 - 11:35 AM

Nice to see them using the lower dose method on you. Now I bet the 5mg dose will be a good maintance prepared to stay on this from anywhere of 18 months to 4 years and dont fall for scare tacktics about being on them more than 18 months. Also I hope your doing ok on those meds, and you may find that the mental issues you have had in the past will decrease with treatment of graves as anxiety is a huge thing we face when we are hyperthyroid. is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

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