[Kimberly]

#1062772

Hello – and welcome! Anything that you can do to pare down your schedule will be helpful during this time. See if there are tasks that are bogging you down that you could potentially “dump” or “delegate”. Building some “down time” into your day to focus on activities that bring you joy and give you energy is also helpful. Examples include meditation, gentle yoga, walking, reading, watching funny movies, or attending a live musical or theatrical performance.

Hopefully, you will start to see the effect of the meds soon. Although the medicine starts working right away to block the production of *new* thyroid hormone, the body still has to burn off its existing stores before we can see major improvements in our hypER symptoms.

As for the eye issues, it would be helpful if you can get in to see an ophthalmologist, although I know this could be a challenge without insurance. Surgical options aren’t generally pursued until the eye disease stabilizes, which can take 2-3 years. However, in the meantime, it’s a good idea to have an expert monitoring your situation, especially if your vision becomes affected.

Please check back and keep us posted on how you are doing!

[1oldbarbie]

#1018117

Hello,
I am newly diagnosed and struggling right now. I was happy to find this forum as it is difficult to make people understand (aren’t you lucky! You can eat all you want and not gain weight!). Just three weeks on Tapazole so no improvement yet. I don’t have insurance so that is all I can do right now even though they really want to do the radiation. I’m just struggling as I’m very weak and shaky….I tried to run across the street and fell down and couldn’t get up. Sheesh. I never considered myself vain, but the eye thingy and my hair falling out has made me feel embarassed in public. I HAVE to work and it’s hard. How is everyone else coping?

[1oldbarbie]

#1062773

Thank you so much Kimberly…
I have ordered a few of the books on the reading list from Amazon and am trying to find some balance, although because I was a type A personality before this, it is hard to convince people I can’t do everything for everybody anymore. I will try to get to an opthomologist as it has affected my vision, unfortunately, you don’t get the best care at the clinic, they tried to convince me I had allergies at first. This has made me want to start some sort of education campaign, I got told I was "nervous" and was having panic attacks too many times. Luckily, I had an emergency which sent me to the ER and they couldn’t get my heart rate down for surgery so that’s how it was discovered. I appreciate your taking the time to give me good advice♥

[Bobbi]

#1062774

On the Type A issues — many of us here are like that, including me. One of the positive things to come out of having this disease for me, though, was finding out that when I pared down, my friends and family didn’t particularly notice. Well, they probably noticed, but the fact that I was not quite as much a frazzled cartoon character was appreciated. ! Seriously, we do not need to do all the things we "think" we need to do. Some things are just extras, not necessary. So my rule of thumb — which I’ll pass on to you to think about — was to think about my best friend. If she felt the way I felt, would I ask her to do…X? If the answer was "no" then I knew I couldn’t ask it of myself. Treat yourself as your own best friend for a while.

It isn’t just clinic doctors that botch our diagnosis, either. I had a long-standing GP who had me convinced I was a hypochondriac when the Graves got bad. Our symptoms are so generalized for a while that a lot of doctors don’t connect the dots. Knowing that you have Graves, those clinic docs may be able to watch your eyes for you. But if you can budget a way to get to an opthamologist for a base line exam, it might set your mind at ease a bit. The opthamologists do not do ANYTHING typically unless they feel our optic nerves are getting pinched or are close to being pinched because the remedies available to them have such serious side effect issues (prednisone, radiation, surgery).

Wishing you well…..

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