[backtohealth]

#1060646

Hi All,

Sooo glad to have found this group. I was diagnosed late in May with a mild form of Graves and tried on Methimazole. Was pulled off because of high liver enzymes. Had RAI June 25, 2015. Also on a beta-blocker for now. Found out that it has helped the symptoms when I was three hours late one day about two weeks ago.

No real clue when I started having symptoms. I chalked it all up to stress. Got desperately sick from a virus while out of town and that started the chain of events when I returned home that actually led up to a very quick diagnosis. Anyone without Graves probably would have not been so sick and would have been over it in 24 hrs.

Anyway, I am discovering that this may not be an easy fix, like my Endo said it would be. He is top flight medically … no question there … but I am starting to see, I think, that if I don’t know what questions to ask I don’t get the answers. And, the answers are not definitive. I am/was very active with lots of commitments … like most people. Feels like he doesn’t think about that.

Have not been allowed to drive, I guess because of the brain fog. Hoping that by the time I see him next week (one month post RAI) that I will get the okay on that … very disruptive. I was told that I couldn’t drive when I asked what I thought was a silly question about it, literally on my way out the door, bags packed etc.

For the most part I have read only horrible things about this disease all over the internet. Ups and downs with medication forever and no predictability. I am going to be traveling to the Galapagos next May … part of this is for my work as a photographer. I am now terrified that I am going to get desperately sick again … heat, travel stress, hiking, motion sickness, etc. Will I be able to do this?

I also now have to find a travel/health insurance that will include a pre-existing condition. Any ideas on that?

I alternate between telling myself that I have a mild form of Graves and that it will recede into the background of my life now that I am post RAI … or … feeling like my life is forever changed and I will never be okay to live freely again.

I use a pedometer and have been walking between 2-5 miles daily for the past two weeks … this is just based on steps mind you … and had five days this week where I didn’t have to nap.

Okay … I’m done with my rant and questions.

Meantime, I am reading up on all of the posts here.

Best to all, Jayne

[Kimberly]

#1183892

Hello and welcome! Most patients actually do well after treatment for Graves’…but you aren’t seeing their stories on the Internet, as they are back out living their lives!

You have quite a bit of time before your trip, which should be plenty of time to allow the treatment to work and to get stabilized on replacement hormone. Make sure that your doc is testing Free T4 and T3 and *not* just TSH. TSH can remain suppressed for quite some time, and is not a good benchmark for determining when you need to start replacement hormone. It’s especially important to get started on replacement before you go too hypo, as this can increase the risk of eye issues post-RAI. (Also, if you are a smoker, please look into smoking cessation resources, as this also increases the risk of eye issues).

You should be fine on your trip – the only issue might be is that if you are still tweaking the dose of replacement hormone and you are going to be gone for a couple of months, you might look into resources for getting blood tests done.

You might call a few places about your travel insurance. I went to Europe two years after getting diagnosed. I was travelling on two separate tour packages, and as I recall, the insurance for one ended up covering the Graves’ and the other one didn’t. I think the one that did *not* cover pre-existing conditions was because I had already paid my final deposit.

Take care – and keep us posted!

[backtohealth]

#1183893

Thank you Kimberly! I will only be out of the country for about two weeks. And,whenever I begin to go hypo my Endo doc will be able to pick up with labs so that meds can be started before full blown hypo. When he does labs free T4 and T3 are always included. I feel very fortunate to be under such expert and experienced care. And, thank you for the distinction about Graves’ …
Best.

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