[Momof5 April 3, 2013 at 1:29 pm Post count: 118]

#1059807

My husband and I went to visit the endo again today, and went armed with a few pages of questions. It was a good visit and she took the time to go through everything we asked. She spent over an hour with us answering everything.

I had been feeling like I was on the verge of requesting a TT rather than ride the rollercoaster. We asked the question about the different treatments and options and what the chance of long lasting remission is. She actually wants me to continue the ATD’s and feels I have a decent chance at remission (based on three factors – no goiter, non smoker, and depending on how the antibodies come back). She says those three factors seem to correlate to higher remission rates.

So, she wants me to stay on ATD’s and let us get to a more stable point. She says I don’t have eye disease – that my eyelid is just swollen due to being hyper, but I am still keeping my appointment with the ophthalmologist on Tuesday for more reassurance.

She reviewed RAI again and eased my fears, just a little bit. I’m terrified of it making my eyes bad.

She said she tested herself and has the antibodies, but obviously isn’t symptomatic.

She also said diet has no impact, even though there are those that say it does.

I’m also seeing a naturopath on Saturday and sure do hope he can help with the anxiety.

One last thing. I have seen it mentioned that many people are low on vitamins and I was going to start some supplements. I discussed it with her and they ran some bloodwork and ALL my vitamin levels are smack dab in the middle levels for normal. So, I’m gonna stick with my multi only.

[adenure April 3, 2013 at 1:43 pm Post count: 491]

#1177749

If I were you, I would start the ATD’s, get labs done in 6 weeks or so to see what your levels are and see how you feel. I did feel better on methimazole. Once you feel better and your anxiety subsides as your levels are stable, you’ll be able to look at all the options without as much fear and worry and make a good decision. I’m not saying you can’t do that now, but it will be easier to think clearly and without anxiety once your thyroid hormones are balanced. I think starting the ATD’s is a good place to start. Also, if you want a TT, you’re going to want your thyroid hormone levels stable anyways bc it will make your surgery safer. Surgery (especially a thyroidectomy) when you’re hyperthyroid is not recommended. Get your levels stable and you heart rate settled (if it isn’t right now), and then go from there.

Like I mentioned before, at my 1st set of labs, my hormones were stable, but my liver enzymes were no good, so surgery it was. But, being on the methimazole for those 7 weeks made me healthy enough for surgery- for that I am grateful! So, as hard as it is, try to be patient while your thyroid levels get stable. If you’re set on surgery, there’s probably no harm in getting a referral to a surgeon or interviewing different surgeons with planning a date. Nothing says you have to go through with it, but maybe the planning might help. I’m a planner, so that sort of thing helps me be at ease I guess.

Hang in there; it’s good your husband is so supportive. Mine is too. Without him, my Graves journey would be a nightmare.

[Momof5 April 3, 2013 at 1:51 pm Post count: 118]

#1177750

Thanks, Alexis. She was very comforting. She said I couldn’t have surgery right now anyway. I’ve started the Methimazole two weeks ago and don’t feel much relief yet. I’m also on 50 mg of Atenolol. She is actually running labs next week (three weeks) just to see if my levels are coming down at all and said we could adjust to a higher dose for the next three weeks (or so) to get me a little more settled.

The one thing she confused me with is the RAI…she said I’d also want to be in a more normal range before doing this. While I know it’s helpful, but I thought you could stay on ATD’s while waiting for the RAI to take affect.

I had a liver panel prior to starting them, and she ordered another next week. She said liver enzymes can be elevated just from being hyper too.

She also suggested I get back to working out and exercising a little. I was a 5-6 day a week exerciser and my bp and pulse shot up so I quit. It’s stable now, so she said it would be good for me and the anxiety. I’m gonna start slow.

[adenure April 3, 2013 at 2:17 pm Post count: 491]

#1177751

It’s ideal to be in a normal range for RAI bc, from what I understand, the thyroid “dumps” its stores of hormones in your system after RAI. So, you can have a serious surge of hormones that can make you really hyper for a period of time. The less hormone stored, the less severe the dump is.

Sounds like you have a good endo. That is a plus! With RAI, you’d have to be away from your family for 8 days I think? I think that’s what I was told when I was given my options.

Glad to hear you’re on a good path. It will get better. My liver enzymes were crazy high (8 times the normal range) and they were in normal range before I started methimazole, so ATD’s weren’t an option for me. Hopefully yours will be normal and give you time to think it all through.

[KimberlyOnline Facilitator April 3, 2013 at 4:06 pm Post count: 4294]

#1177752

Hello – That’s great to hear that your endo was so thorough in answering your questions. And it’s definitely smart to test levels prior to adding any sort of supplementation regimen!

In terms of getting patients stabilized on anti-thyroid drugs before RAI, this is one area (of many!) where doctors don’t always agree. Some don’t believe it’s necessary. The latest medical guidance does recommend getting patients stable first if they have very high T4 levels or if they have other co-existing conditions (heart issues, kidney issues, poorly controlled diabetes etc.).

Prior to thyroid surgery (or *any( type of surgery) getting levels stable prior to the procedure is definitely very important to reduce the risk of thyroid storm.

As you noted, there is conflicting information on diet, but patients who are hypER are generally advised to avoid foods/supplements that have lots of iodine, like the seaweed wrap that comes with sushi. The thyroid uses iodine to manufacture thyroid hormone…which is like throwing gasoline on a fire for those who are hyper!

Take care!

[Momof5 April 3, 2013 at 5:59 pm Post count: 118]

#1177753

I don’t eat seafood, so I’m safe there. I just feel lost and confused. You read one thing on the internet and the doc says another. I just wanna do the *right* thing. I know that’s a silly way to think of it.

I know I’m in the throws of the disease right now and can’t get a handle on my emotions. That’s so not me and it’s driving me bonkers.

I wish I wasn’t so afraid of the eye thing….I could then do the RAI.

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