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  • Andy
    Participant
    Post count: 4

    I just want to remind everything going through this right now, as well as their significant others, that it will get better. My wife (we recently got married), got diagnosed with Graves back in the spring of 2007 at college. She went into remission on ATDs, and we started dating when she was feeling well. She relapsed shortly thereafter (spring 2008) and had RAI just before fathers day. For a while afterwards, she always seemed beaten down. She didn’t have energy to do anything and was generally lethargic. The she would switch doses of synthroid, get jittery, her pulse would increase, she couldn’t sit still, and she would start to get some anxiety.

    She swung between two different doses of synthroid switching dose every 6ish months and felt like crap most of the time. The doctor would tell her that she was in the normal range on the higher dose of synthroid, but she always felt hyper there and her pulse was high. On the lower dose, she felt better for longer, but would eventually start having symptoms of being hypo. I eventually all but yelled at the doctor to let her alternate between the two doses on a daily basis. It has been at least 9 months (probably longer, I don’t remember when I finally yelled at her doctor) on this dose and she’s doing great. I have my fingers crossed that she will finally be stable for at least a few years.

    There was a time when each minute seemed like a struggle for her. We were happy when it seemed like she could go a couple days feeling like herself. Then a month or so ago I pointed out that it had been multiple months since we really thought much about Graves. The main reminder now of her Graves disease is her alarm going off every morning at 6:15am for her to take the synthroid. I remember how stressed she was before every blood test, both because she was worried it would say she was in the normal range (and she felt like crap) and because she was worried it would say she needed to change doses (and the associated months of feeling like crap after each dose change). It’s great to see her like herself now. She has energy, likes going to do things, and isn’t jittery or anxious.

    This board seemed to help her a lot through the past few years. It helped her to know that what she was feeling and going through was normal. It helped me to hear about people who were finally feeling better.

    I really hope this dose keeps working for a while, but all indications so far seem to be positive!

    Kimberly
    Keymaster
    Post count: 4294

    Hi Andy – Thank you so much for taking the time to stop by with those encouraging words! One of the GDATF’s most popular bulletins is “An Open Letter to Husbands of Graves’ Patients” – and you will no doubt be able to relate to the author’s experience:

    (Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

    http://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

    Wishing you and your wife all the best!

    SueAndHerZoo
    Participant
    Post count: 439

    Thank you so much, Andy…. that was a very helpful and comforting post. Your wife is very lucky to have you and I wish you both many “roller-coaster free” years. :) Stability never sounded so good.
    Sue

    Raspberry
    Participant
    Post count: 273

    Andy thanks for the inspiration post – I sure wish I had a guy like you in my life to yell at my doctor to do the right thing. I would do it myself…but honestly I don’t even know what exactly I should be yelling at this point! It’s good to know it can get better but 4-5 years is a long, long time to wait. I wish that there could be some advances in how Graves’ is treated on the ATD or replacement side so we don’t have to wait so long and it isn’t such a struggle to get to a good place.

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