[snelsen]

#1063120

Hi, and welcome!
I am presuming you have your Graves’ diagnosis based on labs, plus symptoms. Do I understand that your only single symptoms is a slight hand tremor when you hold your hands out straight in front of you? That is the usual way it is tested, and yes, it is one of many symptoms. Do you FEEL any different? Do you know your blood pressure? Are you familiar with your heart rate? Is it pretty fast? Do you feel nervous, antsy or anxious?
So, I am asking these questions which do relate to your first visit with your endo. For she will be asking these questions of you. Good to have some answers ready. Based on the fact that you have read a lot, you may have decided for yourself that there is a lot of junk on the internet, as well as valid information, including this site, which is GREAT for support, hearing from others, and learning things. Another good resource is any main academic center. The Mayo clinic comes to mind, but most major medical centers are good.
And, yep, you are right! Broccoli and yoga won’t do it. Your thought to have anti thyroid drugs is probably what you can expect to be prescribed by your endo, plus a beta blocker to control your heart rate if that is an issue. Graves’ is serious stuff. I can’t tell from your post how you are really feeling, how your everyday life is, having Graves’, taking care of a couple of kids, and generally, dealing with your world. Being hyper can be very hard.

Endo questions I think of
First of all, when you go, sign a medical release of information form that they will have at the front desk. Write that you want dictated reports and labs sent to you so you have a file for reference.
2. Ask what labs will be monitered, and what they mean. (There are excellent resources on this board from the facilitators about labs.
3. Ask if you can arrange to have your labs drawn BEFORE your visit. Then you have something to discuss when you are GTHERE, rather than seeing her, being told to get your labs, waiting for the results, waiting to hear what it means. I always arranage to have any lab for any doctor ahead of time. It is something the docs rarely think of doing.
4. This first visit will be longer than most, and a lot of it is the endo gathering your history.

A comment about minimal treatment and side effects. You re in the first stage of this process, and I want to reinforce that taking anti-thyroid drugs is a very important thing for you to do. Being in a hyper state is not a sustainable state.
Since you have done a ton of reading, you probably already know that the basic three treatments for Graves’ are:
1. Surgery
2, RAI (radioactive iodine)
3. Anti-thyroid drugs
Followed by labs, and if you do #1 or #2, a thyroid replacement hormone.
So you may have some thoughts already. Each person on this post has chosen their treatment based on their personal preference, biases, whether legitimate or evidence based it does not matter (i don’t want surgery, i don’t want radiation, I don’t want anti-thyroid drugs) It matters what you decide. Those are the options.
Main goal now is to get you to a point where you do not have too much thyroxine racing around your body!
Do write with more questions, or ask if I said anything that does not make sense to you.
Shirley

[KimmieSue]

#1018178

Hi,
I am new here. I am a 41 year old mom of two. I was recently diagnosed with Graves disease. My only symptom is a mild hand shake and so for a while I read a bunch of books and searched the internet for some way to deal with this that did not involve one of the traditional treatments, but I now am resigned to the fact that I will have to do something more than eat broccoli and take up yoga (bummer!). My first appointment with the endocrinologist is in 2 weeks and I am leaning toward wanting to do anti thyroid drugs and hoping for remission. What questions so you recommend I ask the doctor? Mind you I am pretty type A and have read about 8 books on thyroid disease and most of the posts on this board (great resource! thanks!). I am hoping for the minimal treatment necessary and also the fewest side effects (because I don’t yet have many symptoms from the disease). I would love to know what I should ask her as well as any other advice about dealing with her because from now on I will be quite a regular. By the way, I am in Sacramento and the MD is McMullen — does anyone have experience with her? She came recommended by a surgeon friend and by my obgyn. Thanks in advance. Reading the posts and answers from the posters and facilitators on this site has been very helpful.

[Kimberly]

#1063121

Hi KimmieSue – Welcome to the boards! Shirley gave you some great advice…I just have one thing to add, as someone who decided to go the ATD route. Make sure that your doctor is making your dosing decisions based on your Free T3 and Free T4…and NOT on your TSH. In Graves’ patients, TSH can remain supressed for months (or even years) so that is not a good indicator of whether or not you are still hypER.

We sound pretty similar — I think I had read 5 different books on thyroid disease before I got diagnosed. ” title=”Very Happy” /> But having that background information will definitely allow you to have a more informed conversation with your doctor.

Best of luck!

[KimmieSue]

#1063122

Thank you Shirley and Kimberly for your responses. And Shirley I love the idea of getting the labs done first!!

Per your questions, my resting heart rate is 70 and my blood pressure is 110/60. In the middle of the day my heart rate is 80. I feel the same way I always have. I have been slightly stressed and a get-it-done kind of person my whole life. This past year I have had marital stresses more so than normal. And the year before that I got a really bad week-long flu over Thanksgiving. But I do short triathlons in the summers and run one half marathon a year and work and take care of the kids and sleep well and exercise and mostly eat well. I used to drink diet coke a TON but after reading a book about how this one lady thought it caused her to have fake Graves disease I gave it up (oh and how I miss it!) and am trying to stay off it even though she seems kind of like a quack. Eating and drinking real food can’t be bad for me.

I am leaning towards the anti thyroid drugs because that seems like the least drastic, least invasive option. The radioactive iodine scares me. And I do not like the idea of taking pills forever. So I was thinking try the ATDs and then if I get worse or if they don’t work perhaps my point of view will change.

My labs are as follows:
TSH < .03 twice
Free T3 6.98 and 6.85 two weeks prior
Free T 4 1.53 and 3.1 two weeks prior

And I had a thryoid uptake scan that confirmed diagnosis.

Thank you both for your replies. I look forward to hearing advice from others as well.

[lhc11]

#1063123

Hi KimmiSue,

You sound very well-informed and ready to deal calmly with all that Graves entails, which is great; it’s also great that you don’t have any terrible symptoms and that it’s been caught before they manifest (which they probably would, given time). The only thing I would say about ATD’s and remission (which you already know, I think) is that it seems to me like *most* people who try for remission 1) need to spend at least 18 months on the ATDs before going off to see if they stay euthyroid, and 2) even if they do go into remission, they often slide out of it, sometimes to a worse degree of hyperthyroidism than before (one of the facilitators on this board, James, seems to be a very rare exception — but again, this is all anecdotal evidence based on what I’ve read primarily on this board–which is skewed towards people who are either newly diagnosed or who eventually chose RAI or had surgery, or so it seems–again, just seems–to me; let me emphasize that this is just my perception). And the ATDs, as you know, can cause damage to white blood cells or the liver over the long term, though some people do stay on very low doses (i.e., not strictly "in remission" because not off the drugs) and seem to be fine. I haven’t had children yet and both didn’t want to be taking the ATDs long term (I thought of them as "toxic" to my system) and/or while trying to conceive, which is a big part of what governed my decision to have surgery this past summer. I can totally understand not wanting to do either RAI or surgery — believe me, I felt really stuck between three rocks and three hard places on all of this, as none of the options seemed good at the time (but I’m ultimately very happy that I had the surgery). I think you and your endo will figure out the best thing, and of course if the ATDs don’t work out for you the way you hope, there are still the other options at your disposal. I don’t love taking my thyroid replacement every day, that’s for sure, but it really is no big deal, and I’m personally happier putting something back into my body that it’s missing, rather than putting something foreign into it to tamp down an overactive thyroid.

all best,
lhc11

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