[SueAndHerZoo]

#1059982

So I had my routine follow up with endo. Levels are close to good… I’m in the “high normal” range. He said I could raise my Methimazole a little or stay where I am for a few more weeks and see if they come down more.

I told him that as an endocrinologist I’m sure my levels looked good to him, but from my point of view they still sucked. I explained that even though my thyroid symptoms were starting to diminish, the fluctuations in the past four months set off a lot of my other pre-existing conditions and I will be trying to deal with and recovering from those for many months to come. And then my thyroid levels will change again, setting off my other conditions, again etc. I broke down and cried in his office…. didn’t realize I was that frustrated until it happened.

He mentioned RAI and I said “but I need consistency and stability in my levels and RAI would just bring me more erratic fluctuations, right?” He agreed. I told him I wanted this cut out and he said that my thyroid wasn’t really bad enough for that but considering how much it’s messing up other areas of my life, that perhaps a surgeon would agree. He referred me to three surgeons he swears by at Yale and each of their offices will be calling me to set up consult appointments.

I was pleasantly surprised and impressed that he actually agreed to help me get surgery, even though I am a good candidate to control it with meds. I was also very impressed and surprised when he stood me up and hugged me before I left. He gave me a pep talk about what a strong woman I am, you will get through this, etc. etc.

I found a human endo!
Sue

[LaurelM]

#1179356

That sounds great Sue! It is always good to feel that progress is happening.

Laurel

[Kimberly]

#1179357

Hi Sue – Wow, we’d love to have that endo on our physician registry! If you wouldn’t mind passing on his contact info to me via PM, we can contact the office to see if they are interested in a listing.

So glad you were able to get consults set up with a minimum of hassles…and it’s wonderful to have access to a premier institution like Yale!

Wishing you all the best!

[Boomer]

#1179358

Well it’s about time a feel-good story popped up around here!

Sounds like you scored Great Endo, huh? Still though, I hate to think about how much he charges for hugs. Then again it’s worth it huh? YOU’RE worth it!

I’m happy for you

Good vibes to all,

Boomer

[SueAndHerZoo]

#1179359

Thanks for the well wishes….. it’s not exactly great news to hear you may be going in for surgery but it’s certainly great news to be offered the option.

I was going to get the surgeons opinions on whether I should do this or not but now I wonder… are thyroid surgeons any good at determining whether we should or not, or are they only good at doing it? Well, I guess I’ll find out.

Of course now I’m going to have to battle all the naysayers (family, co-workers) who think it’s ridiculous to optionally cut out a body part, but unless they’ve walked in these shoes, they don’t get a vote.

Any recommendations on what I should ask these surgeons, besides “how many have you done?” Do I care more about how much I like him or how experienced he is? I’m guessing I will only meet him once or twice so “liking him” is probably not important.

Of course I’m worrying about gaining weight because I always work very hard to stay fit and trim but at this point “fat and happy” doesn’t sound so bad.
Sue

[amosmcd]

#1179360

Hi, Sue–

I prefer docs who are both good at what they do AND have a friendly personality. I also live in a large metropolitan area that has lots of docs to choose from, so I am able to find both. I’d definitely pick expertise over personality if you have no choice, but go for both if you can.

My surgeon spent plenty of time with me (I saw her once at the office and then right before surgery in pre-op) and freely discussed complications and answered all my questions. I wanted to know when I could get back to my exercising again, who determined the post-op levothyroxine (or Synthroid) doing, when I should stop my PTU before surgery, what I would feel like after surgery, where the incision would be, how large it would be, what sort of scar would I have, etc. Just whatever concerns you may have, write a list and bring it with you to your appt, and write down the answers. If you have a memory like mine, you will forget half of what the surgeon tells you when you leave the office unless written down. They should have pamphlets explaining the surgery and also may be able to access info on their computers in the exam room. (Most docs seem to have computers to access pt records and their own office stuff in exam rooms now.)

Your endo will also be able to answer questions your surgeon may not know. I would schedule a pre-op appt with your endo if you decide on surgery so you can get questions answered about post-op endo care.

It’s scary making a decision. I was a bit freaked out by it, but made sure my questions were answered and it made it much less scary by the time the surgery day rolled around.

Amy

[Boomer]

#1179361

Of course it’s not good news to hve surgery bnut it sure is good to hve a comapssionate doc adn the sound knowledge one needs to make an informed decision. Beats being in limbo I’ll bet.

I wld not only ask my surgeon how many he’s done but also what percentage had complications both minor and major. I don’t think that is unreasonable to ask- it’s your body. You might consider making a list starting today and include any and all questions that pop up. That way you won’t have to try to remember everything in such a stressful situation.

“Optional” Ha! I supposes it is an option between being miserable and in limbo and waiting for the other shoe to drop, or being restored to health. Your body, your life, your choice. Naysayers? Nope I can’t hear them either. Their noise falls on eaf ears as far as I am concerned.

Funny you mentioned “fat (I prefer comfy) and happy”; I just had that conversation with my buddy today. I told him I’d rather end up overweight than looking, feeling, and frankly being on the edge of starvation. I also told him I’ll take overweight over ups and downs and tremors and pounding heart ANY day.

You’re a sharp cooklkie- don’t be manipulated into second-guessing yourself. I know it’s not much but I support ANY decision any of us makes regrding their health as long as it is based on sound reasoning. In my eyes you’re as sound as they come.

Rock it!

Big love,
Boomer

[SueAndHerZoo]

#1179362

Thanks, Amy….. I will start my list today. I write them in an app on my cell phone and I jot down or “speech to text” the answers right then and there when I go to any doctor’s office. Impressive surgery track record AND a good personality? Hell, can I go for good-looking, too?????

Thanks, Boomer. Your kind words just gave me the boost of confidence that I almost lost (fatigue will do that to you) and you’re right….. I can continue to let this happen to me, or I can take charge and mandate what happens to me.

It’s a shame that more people don’t write on the internet about their POSITIVE experiences….. all I’ve been reading today are horror stories. I’m taking them with a grain of salt, though, and the more I think about it, the more I want this thing OUTTA HERE.

Thanks for the support.
Signed,
Smart Cookie

[Gabe]

#1179363

Hi Sue, welcome to the TT club! It’s a difficult decision to make but if and when you make it I believe you’ll feel a sense of relief that there can be a real light at the end of this ugly tunnel. I had a list of many questions that I pulled from the “treatment options” big boring medical paper that Kimberly keeps on this forum. I also searched on google and ‘my guy’ answered ALL of them beyond my satisfaction AND he had an appropriate sense of humor. I skipped out of his office all smiles that I had found Mr. Right!

People will judge you and make stupid comments but hang tough and be strong. They are not the ones waking up with this crap every day.

Forewarning: even if you make the decision, be prepared that as you get close to cutting time, you will question your decision and get naturally nervous. I’m a week away from my big day and my anxiety is a little higher than normal. I’m determined to focus on the positives!

My best to you, Karen

[SueAndHerZoo]

#1179364

Hey Karen!
Thanks for the words of wisdom. I really DO already feel a sense of relief…. I am 80% sure I want to do this (well, I would rather not have to do this, but given the three options, this one definitely seems the best for me). Last time I mentioned it to my endo he said he wasn’t sure the surgeons would do it since my levels aren’t that bad, but when I explained to him today that from an Endo’s point of view my levels may not look that bad but when they set off some of my other conditions, they are NOT acceptable to me. He understood and said that if I explain it like that to the surgeons they would probably agree to do surgery.

I have already “rehearsed” the whole scenario in my head many times. The night before surgery I may be restless but will go to bed early since I probably have to be at the hospital early. The next morning will be the hard part: I can’t function without coffee and I can’t just jump up and get ready to go out… I need to wake up slowly. So I will pretty much stagger to the car, have my husband drive me, and hopefully after that I will be knocked out soon. The next thing I’ll know about is waking up in recovery, probably being very groggy (which would be a welcome relief) and then getting instructions and being released the next day. Then I will spend two weeks home from work and enjoy being pampered by my husband.

I will expect to feel pretty good the first week or two and then will TRY to be prepared to have ups and downs as my body adjusts.

OK, first snag: I take a lot of meds when I first wake up in the morning and it wouldn’t be wise for me to skip some of them. What do we do about meds the morning of surgery? I don’t think I’ll be able to swallow them AFTER surgery, right?

Geez, I hope I’m less controlling and organized and obsessive AFTER the surgery. I haven’t even spoken to a surgeon yet and I’ve got my prep and recuperation laid out, hurdles included!

Thanks for the support – I will be following you closely and sending positive thoughts and energy. I’m sure you will be fine – you sound more than ready.
Sue

[Gabe]

#1179365

Hi Sue. In my pre-op interview I was told to take all my normal meds the morning of surgery with a little sip of water. The only meds I take are Meth and Metoprolol. If you are on different meds, add this important question to your long list. Since I also take Xanex at bedtime as needed, they even told me I could take one in morning if I felt I needed it for anxiety.

I really felt better after the pre-op interview. It was conducted at the hospital when I went for all my pre-op lab work (or it can be done over phone). The nurse was great. I got printed, clear instructions on what to do (or not do) leading up to the surgery and the morning of the surgery, including how to dress, what to bring to hospital, etc.

Have a great Memorial weekend!

Karen

[SueAndHerZoo]

#1179366

OK, so I can probably take my regular meds the day of surgery, but will I be able to swallow them the next day???? I thought we were on a liquid or “mush” diet for a few days.
Sue

[Stymie]

#1179367

Sue that is great news that your endo is supporting your TT. he sounds like a very compassionate and caring guy. Glad that you found him!

Good luck with your consults at Yale. I hope it goes well

Hugs!

Diane

[SueAndHerZoo]

#1179368

Stymie wrote:

Sue that is great news that your endo is supporting your TT. he sounds like a very compassionate and caring guy. Glad that you found him!

Good luck with your consults at Yale. I hope it goes well

Hugs!

Diane

Thanks, Diane. The fact that I have Yale at my fingertips is what’s really pushing me towards surgery. I mean, having the choice of RAI or having surgery at Yale almost seems like a no-brainer. If they can’t do it right, no one can.
Sue

[smtucker]

#1179369

Sue, I never did a mush diet following my TT. Went straight to real food, though I did need cepacol for two days.

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