[amosmcd]

#1059764

I was impressed by her experience level. Does tons of thyroidectomies a year. Been doing it for 26 years.

She said I would take a Calctriol dose a week before surgery to help with calcium levels and stay on it a few weeks to support the parathyroids. No mention of needing iodine drops or needing to be euthyroid. Would be overnight in hospital and off work 1-2 weeks. I would hope to be back after a week, but not sure. She has never had a patient with permanent vocal cord nerve damage, but says the risk is always there. Risk with parathyroid damage at 1%.

My new endo just decreased my PTU by half to 25mg/day and see her in 6 weeks. My symptoms are very mild at the moment, mostly fatigue. My endo isn’t too optimistic about my levels being controlled on ATDs since they tend to swing up and down. She doesn’t think being on PTU long-term is a good idea.

I’m just wondering if surgery is something I should just do to be rid of the Graves’ (aside from antibodies) or if I need to be horribly symptomatic before I have surgery. RAI is not an option–I don’t want radiation.

Anyone have surgery with mild symptoms? I should say that without ATDs, my symptoms would be bad. I had big weight loss, elevated heart rate, palpitations and tons of anxiety before getting diagnosed this past Sept.

Thanks for your input.

Amy

[smtucker]

#1177360

I just had this surgery yesterday, performed by a surgeon who specializes in thyroid.

My only prep for surgery was food restrictions. My surgery took less time than anticipated. It wasn’t enlarged. They kept me in recovery for 4 hours to watch for bleeding. Evidently bleeding is a rare, but serious, side effect of the surgery.

I spent the night in the hospital. This morning I had a calcium blood test. My calcium was normal, so no calcium replacement therapy. I have been warned to pay attention to my fingers and feet in case the calcium drops.

I did push this morning, and was released by 10:30. Happy to answer any of those knarly personal questions. Just ask!

*smtucker*

[amosmcd]

#1177361

I also thought it was interesting that she said the parathyroids are very difficult to see, which is why they can be damaged or removed during surgery. Is this true? This is a worry!

[amosmcd]

#1177362

Thanks very much, smtucker! I hope you have an uneventful recovery.

Amy

[amosmcd]

#1177363

Also, the surgeon I saw is an ENT. Is this the most common type of thyroid surgeon? What other kinds do TT’s?

[snelsen]

#1177364

sounds like you saw a great doc! Experience with the surgery is the most important thing, and sounds like she’s had a ton of it. And that she chooses to do TT!

Generally, the two kind of surgeons are ENT (ear, nose and THROAT!) and general surgeons who choose to do thyroidectomies. No different that surgeons who choose to do gyn surgery or cardiac surgery. They usually general surgeons.

Re the parathyroids. They are teeny, tiny glands, two on each side, which cling to the thyroid gland. The surgeon has to be careful, that is all. They are usually about the size of a grain of rice, or slightly larger. I have seen a lot of surgeries in the OR. In almost any surgery, there are things to be careful of, that is for sure! You have a good and experienced surgeon who you like! All winners, in my book.

Here is a site where there is a nice visual of the relationship of the thyroid gland and the parathyroids.
Shirley

[adenure]

#1177365

Hi!

As far as the parathyroids, you can take Tums (calcium) as a supplement post surgery. My surgeon had me take 1000 mg. of Tums 4 times a day the 1st week, 3 times a day the 2nd week, and twice a day the 3rd week. He told me that the parathyroids (even though not damaged) are inflamed post surgery so the Tums is like a precaution for a few weeks. I took the Tums- it wasn’t a big deal- and had no issues with my parathyroids. It’s probably better to do that than to wait for calcium issues to happen. But, check with your doctor (since I’m not one- hee hee!).

My surgeon was a general surgeon. I have no regrets about having my surgery. I’m healthy and well now.

[amosmcd]

#1177366

Hi, Shirley–

There was no link or site on your reply to me. Could you repost?

It’s late and I’ll reply more tomorrow to everyone’s replies.

Amy

[snelsen]

#1177367

Hi Amy!
Sorry, here it is.

http://parathyroid.com/parathyroid.htm

[Kimberly]

#1177368

So glad that the consult went well!

Just a quick note on the parathyroids…you can actually function if just *one* of the four survives intact. And if there is concern about blood flow being cut off to the one post-surgery, they can actually transplant it to another part of the body.

Although the risk is very low of damage to all four, this *is* a consideration when making a treatment choice. We heard from a few people on our Facebook page recently who had to deal with low calcium levels post-surgery. There was an article recently about a new testing protocol for helping determine which patients might be prone to low calcium issues.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/vol-6-issue-3/vol-6-issue-3-p-9-10/

Wishing you all the best as you work through the pros and cons of all your options!

[amosmcd]

#1177369

Hi, smtucker!

What were your symptoms like before you had surgery? Were they well-controlled before surgery?

Thanks to everyone who replied to my previous post!

I feel like I’m stable right now on PTU, but I know it’s just a matter of time before I go hyper again now that my endo has cut the PTU dose in half. I feel like I want to have surgery and get it over with sooner than later, so I can go camping in California in late June and hopefully be pretty much recovered from the surgery. I know I can’t totally count on my levels being normalized on levothyroxine by then, but hopefully the worst will be over.

I got more questions answered that I forgot to ask the surgeon. Her staff is really good about returning phone calls. My biggest concern is that my symptoms are pretty good right now, mostly just needing a lot of sleep each night, and would I be trading that for the potential complications of surgery. I just don’t think being on PTU long-term is safe. I think I’ll have to call the endo to answer those questions for me.

I wish I’d started out with a better endo and been referred to a surgeon a lot earlier. I felt so horrible on Methimazole, I would have had surgery in a heartbeat.

So just have to sit here for a few more days worrying, which I’m very good at!

Amy

[Kimberly]

#1177370

Hi Amy – Thanks for the update! Hopefully, you can find some relaxing activities this weekend to take your mind off the worrying!

You mentioned some follow up questions you had for the doc…if you get a chance to post them here, I’m sure others would be interested in the responses.

Take care!

[snelsen]

#1177371

My experience-
was on PTU, like you. Was stable,don’t recall how much. For me, I wanted to MOVE FORWARD, as fast as possible, have the surgery. This is what I did.
I was so so glad, other than a bit of a sore neck, from the extended position of my head during the surgery, not from the surgical site, I was fine, hard to chew steak for a few days, just a lot of work. No nausea, minimal discomfort, no pain, tired for a couple of weeks. but out and about the 2nd week, short walks the first week. Had help with meals, laundry and baby. Needed it.
Went back to work full time as an RN too soon, beginning of week 3. If I had to do it again, I would go back part time that week, or not at all so I could have fun, that 3rd week.

There are other posts by adenure about her experience, more recent than mine, and also posts my myself and others about the post op period. I went home the next day. Pretty smooth sailing for me all the way around. When I had my surgery, the practice was to leave a teeny tiny bit of thyroid gland, hoping it would crank out the right amount for a long time. this worked for me for 30years, then I began to need replacement.
Shirley

[adenure]

#1177372

Hi!

I understand your dilemma about whether to do the surgery or not. When I went off of methimazole due to liver issues, my thyroid levels were stable. Friends kept saying to me that maybe I would stay stable and go into remission. Granted, I had only been on methimazole 7 weeks! But, every week I had my blood drawn and my thyroid levels were stable (for the 6 weeks I was off medication and waiting for surgery). I was only on 5 mg. of methimazole that 7 weeks and being stable 6 weeks, every once in awhile I’d think, maybe I don’t need this surgery… My problem was that if I went hyperthyroid again, I’d be up the creek since I couldn’t take the ATD’s bc of the liver issues. So, I went for it, and I’m very, very happy that I did. It did take a good 4 months to feel good on Synthroid, but I go to sleep and I SLEEP!!! I wake up, and I look forward to the day. I teach my children (I homeschool), exercise, keep up with my toddler and enjoy life. I don’t think about my heart rate anymore, I’m not anxious. It’s awesome to actually live my life and NOT think about any health issues bc I’m healthy again! Is everyday perfect? Am I 100% pre- Graves me? Not exactly. But, pretty darn close! So, for me, surgery was the way, as Shirley said, to move forward. To get on with life. For others, ATD’s and RAI to do that, but if you’re considering surgery to just be done with the hyper rollercoaster, go for it!

[amosmcd]

#1177373

Thanks, Shirley and Adenure, I appreciate your perspectives. They are very helpful.

I think some of my ambivalence and anxiety is coming from depression. It’s been coming on gradually. Usually this is the time of year when I tend to feel a natural lift in spirits after winter and can get outside more and garden. Not this year. I’m thinking that it could be tied to my friend’s passing. He went into the hospital on April 4th last year unexpectedly and passed away April 22nd. We had been best friends for 12 years. And I lost my Mom just a little over a year before he died. My closest girlfriend lives in California, and I don’t have a circle of friends here. It’s been a very lonely year.

So I think that is clouding my decision-making ability. I would have been talking it over with my friend, who was my sounding board, and I was his. Such a loss, all of him.

I do see a counselor, so will talk it over with her this week. Being at work helps distract me, too.

Thanks for listening.

Amy

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