# going for second opinion soon



## pandatx (Mar 27, 2013)

I'd like to know exactly what blood work to ask him to order. This is what I have had already:

TSH - undetectible
Free T4 - 1.89
Free T3 - 5.6
TPO - negative

I've also already had the RAIU test/scan (74.4)
Anything else that I should ask for while I'm there?


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## Lovlkn (Dec 20, 2009)

A second opinion for what?
RAI or surgery?


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## pandatx (Mar 27, 2013)

just a second Endo....I know the DX isn't going to change but I'd like to see what he has to say about what he suggests for treatment. The first one didn't really take the eye thing seriously and that bothered me. Also, she was pushing so hard for the RAI. I opted to start meds at least until the second opinion visit and I started on Sunday but I am still struggling with not wanting to take them. Each day it "iffy" if I will.


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## webster2 (May 19, 2011)

Endo's are tough to love. It took me three to find one my ENT described as "human". I don't love him but we can work with each other.

Are you are to schedule an appointment with an opthamologist without a referral? If so, do it..it will give you peace of mind.

The first line of treatment is the ATD and beta blocker. If you're thinking of surgery, they do like to try and tame the hyper a bit before operating. I did the same thing about the meds. I finally took them and things got put in motion. You're pretty hyper and might get some relief from the meds.

Have you had Trab and TSI tests done?


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## pandatx (Mar 27, 2013)

Good morning Webster! No Trab and no TSI (the first Endo kept saying it wasn't necessary and that the insurance companies don't like them to order them and they're REALLY expensive...?" Anyway, I thought I'd definitely ask the second guy to do it. I made an appt with an opthamologist for Monday afternoon just for my own peace of mind. You already know I'm so paranoid about gaining weight with the meds. I really struggled with an eating disorder in my past and that is still a really tough one to get past for me. But it it worth hurting my health over that? I have to work really hard to put it in perspective. They did start me on beta blockers about 10 days ago or so. I'm intermittent with them. At first I would only take 1/4 of a pill if I thought I needed it. Then the Endo got on me to just take 1/2 a pill every day. I'm taking it every other day right now.


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## pandatx (Mar 27, 2013)

I see in your signature that you were diagnosed in June and had the thyroidectomy in July? So you weren't on the meds very long, yes?


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## jenny v (May 6, 2012)

Here's the thing, and this is coming from someone who also struggled with an eating disorder for many years and is currently in the midst of a hyper swing, you've got to take the meds and you've got to take them regularly. Your heart is under stress from the Graves and eating disorders can also be very hard on the heart, so we've got double whammies working against us there. The beta blockers protect your heart, which is one of the most important things you can do for yourself at this point.

I totally understand where you're coming from with the fear of gaining weight, I really do, but you can always lose weight and come back from that. It's much harder to come back from heart damage.

Not trying to scare you, but I see a lot of myself and my own fears in your situation and I was lucky enough to have a "tough love" friend put this into perspective for me years ago.


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## pandatx (Mar 27, 2013)

Thank you Jenny. The way I'm feeling today, your reply made me feel like crying (thankful tears). It really does help to hear it from someone who knows that issue and I can take tough love. I get scared when I read people saying that they gained 40 pounds in a month and are eating a great diet (gluten free/paleo/whatever) and working out like crazy and can't lose the weight.

But you are 100% right about the heart. And I know this. I just needed to hear it again. The eating disorder is such a powerful thing...even years later. I have to be so vigilant not to go there. I'm paying the price in a lot of ways for that dangerous little "friend".


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## jenny v (May 6, 2012)

I hear ya! I'm not sure that an eating disorder ever fully goes away; even though I'm healthy now and can control it, there's always that little voice in the back of my head counting every calorie eaten and burned. It can be a daily battle, but it is one we can win. Hang in there!!


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## pandatx (Mar 27, 2013)

I've always said its like being an alcoholic (and I'm not saying that lightly). Just one "slip" away from being all in it again. Good now, but its always lurking back there. I, too, don't think it ever really is all the way gone.

Thank you, again, for the tough love. I took the beta blocker


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## webster2 (May 19, 2011)

pandatx said:


> Good morning Webster! No Trab and no TSI (the first Endo kept saying it wasn't necessary and that the insurance companies don't like them to order them and they're REALLY expensive...?" Anyway, I thought I'd definitely ask the second guy to do it. I made an appt with an opthamologist for Monday afternoon just for my own peace of mind. You already know I'm so paranoid about gaining weight with the meds. I really struggled with an eating disorder in my past and that is still a really tough one to get past for me. But it it worth hurting my health over that? I have to work really hard to put it in perspective. They did start me on beta blockers about 10 days ago or so. I'm intermittent with them. At first I would only take 1/4 of a pill if I thought I needed it. Then the Endo got on me to just take 1/2 a pill every day. I'm taking it every other day right now.


Yes, I was diagnosed after a thyroid storm. My endo feels I have had Graves since my first surgery, 20 years before. My body has damage from not being treated. I was still pretty hyper when I had the last surgery.

I didn't gain any weight while on the ATD's and beta blocker, nor have I gained that much since the surgery. I was a hard core athlete before I got sick, my change in lifestyle because I didn't feel well made me gain some weight. I am not back to that place but I am getting there, and you will too. Do what is best for your body right now, it is in distress, treat it kindly. When you have been treated, follow your current habits and you should be fine.


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## pandatx (Mar 27, 2013)

My second opinion doctor called today and had a cancellation for tomorrow so I'm going tomorrow at 2 instead of on the 30th. Yay. I think I'll just feel better after having seen both Endos.

Any more specific tests that I should be asking for?


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## pandatx (Mar 27, 2013)

Got my second Endocrinologist opinion today. He said its 100% that its Graves and a severe case at that. Y'all know that I have not wanted to take meds b/c I'll gain weight and he said "this is a serious medical condition" and I need to get my priorities in order. He's a straight shooter, that's for sure. I asked about this condition with my apnea and he said that there's no way this is not affecting my sleep. Who knows what my sleep will look like once this is addressed. He said absolutely no alcohol. I guess too b/c I'm trying the Tapazole and that can be hard on your liver to begin with?

He is another Endo that leans more towards the RAI. Surgery is last on his list. He said that being hyper puts you at more risk with the anasthesia and also that Graves' thyroids are more vascular so more bleeding? But I'm trying the meds for now b/c I just can't make that decision right now.


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## webster2 (May 19, 2011)

I think you have a good endo.

Here's an exerpt from a Geneen Roth article on being ill, ""I can't do this. I will get fat." My doctor said, "I don't think you will-your body is starved for this kind of nourishment. But what would you rather have: a ragged, joyless, hairless thin body or a healthy, radiant bigger body?"

This is temporary. Heal your body and you will be back on track and not fat. Graves is a serious illness, and youre really hyper.


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## pandatx (Mar 27, 2013)

Thank you webster2. I really appreciate the encouragement and support you've been giving me. I don't take it for granted for a moment. xoxo


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