UPDATE: Better Than Ever

It’s been a while since I last posted. I really need to do a better job at keeping you guys updated. But, I’m glad that so many have stopped by to share their stories, and I’m very happy to hear that my story has made a difference.

So… how am I doing? I feel great. It’s been quite the journey, but I don’t resent any part of it. I’ve learned so much about myself through all of this. I have realized just how strong I am, and how determined I am to live my best life!

My thyroid levels have been fairly consistent. I’ve been on 125mg of Synthroid for almost two years.  I have found that when my TSH drops below 1, I get very anxious. My doctor suggested taking half a pill once a week. I was still feeling lots of anxiety, so I tried taking half a pill twice a week, and I found this to work perfectly for me. I’ve managed to keep my TSH between 1 and 2.

My eyes are perfect. The mild TED that I previously had is GONE! No eye symptoms whatsoever. My weight is normal. I’m about 7lbs heavier than I was before I was diagnosed. But I’m happy just the way I am. I try to exercise at least 3 times a week, but with work and a busy travel schedule, it’s not always possible. Once I settle back into a consistent workout regime, I’m sure I’ll lose the extra weight.

The only issues that I have been sorting out are:

  • Insomnia – ever since my diagnosis, I’ve gone through cyclical insomnia. Very recently, my insomnia got really, really bad. I have since started taking some natural remedies (mainly CBD) and this has helped immensely with any anxiety I previously had, which in turn has given me really good sleep quality. My insomnia, is now a non-issue.
  • Acne – I have always had acne. Right after my diagnosis, it finally went away, but recently it came back. I think it’s mainly hormonal and I’m expecting it to clear up soon. I’ve been seeing a dermatologist so I ‘m not worried about this.
  • Heart murmur – Lastly, right before I was diagnosed, I started noticing a slight heart murmur. I still have it, and I need to follow-up with a cardiologist to make sure there was no damage.

I want to hear how you’re doing. Please comment below and let me know.

I am not a doctor and the content on this blog is not medical advice. This is simply my experience with Graves Disease, and all thoughts expressed on this blog are my opinions. Please consult a doctor if you think you have Graves Disease or prior to taking any action that may affect your outcome with Graves Disease. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.

7 thoughts on “UPDATE: Better Than Ever

  • I am 26 and have had Graves for at least 10 years, I have been on the methimazole and exhausted every natural option and diet but never have felt well…. never have been in remission. I’m ready to get off this roller coaster and am planning on moving forward with RAI after the holidays. I feel nervous but it is so helpful reading your experience. I am nervous about my eyes, and i am nervous about my thyroid going nuts while it’s slowly dying…especially if i have to be alone while it/I go crazy…but maybe it will not be so bad and I’m really looking forward to stability someday, I’ve not had any for so long.
    Anyways thank you for posting all of these updates.

    • Hi there and my apologies for the delayed response. I hope your RAI treatment is going well, please check-in and let us know. Dealing with it for 10 years sounds exhausting. Don’t worry about your eyes. Focus on your recovery. Think of how great you will feel very soon. Just make sure to have your follow-up appointment ready at week 6, so that you can get tested and hopefully start on thyroid hormone immediately. The risk in TED happens if you wait too long after RAI to start hypo treatment. You got this!

      • Thank you for the response, as of now my TSH isn’t “hyper” enough for the RAI so I’m off my methimazole (feeling awful) and checking blood the end of January, if it’s in range I’m clear to go ahead with the ablation the next week. I have read so much more about life after RAI and i feel so much hope!!! The unknown is a little hard for me, like what will i feel like and how long will it take before i can get on the hormone and then how long until i feel good on the hormone… I am so ready to get back to having a life i feel like living instead of just watching it pass me by. Thank you for this blog and also for your posts on reddit, that has been a very helpful place to connect and ask questions with people who have been there!! I will keep you updated, hoping it all goes smooth!!

  • I had rai over forty years ago and I want to share with everyone that graves disease is not a death sentence.

    Yes going through the recovery was not fun pretty much the same symptoms as menopause but once it is over it gets better.

    I’m not going to lie trying to get my meds correct has been an uphill battle but just this year i found an osteopath that came up with the most simple and “duh” solution i take a smaller dose two days a week. wa la my tests are great now. Once they get your prescription balanced out , life is good .

    Now forty years later I am glad I have graves disease. I find that everyone around me gets the cold , the flue, the yuk and I dont.
    I only get sick about twice a year and most times its sinus infection brought on by allergies . You see that same crazy immune system that hated my thyroid also hates every day bugs.

    What I am trying to share in my clumsy way is do not despair with the diagnosis , graves disease is easy to forget you even have.
    I dont even have to think about it except twice a year when the doc wants blood.

    Since treatment, I have had a full life born three children and at 63 years old still work a full time retail job on my feet all day ,because I want to

    Keep your chin up , recovery will end.

    • Thank you for sharing this Debra! Regarding the smaller dose, I do that as well and it has made a huge difference. And you are absolutely right when you say, “do not despair with the diagnosis.” Thank you for stopping by and sharing your thoughts!

  • Thanks you so much for your blog!
    I myself do not have Graves but my daughter was recently diagnosed and had RAI three weeks ago. She’s. Not feeling great right now but is very encouraged reading your posts. God bless you for taking the time to let other People with this disease know that they are going to be okay.

    • Hi Paula! Thank you for your kind words. My eyes got watery when I read this. Your daughter will pull through. RAI recovery is tough, but it will get better! A year from now she’ll look back on all of this and realize she’s a lot stronger than she ever thought she could be. I wish her a speedy recovery!

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