[lhc11]

#1064610

Hi there — I just had my thyroidectomy on June 9th (you can look up all my musings and postings about it by doing a search with my user name, lhc11). I had Googled and found a really extensive list of questions–almost too extensive–that I asked my surgeon, and I just tried to find it for you but can’t (there are actually a lot out there). But off the top of my head, I would say that the most important questions are:

1. how many thyroidectomies do you do per year (sounds like you already know the answer, and 200 is a very good number!)
2. what is your (the surgeon’s) personal risk rate for damage to a) the laryngeal nerve and b) the parathyroid glands?
3. how big do you anticipate my scar will be?
4. how long do you expect the operation to take?
5. can I spend the night in the hospital if I wish? (this is more of an insurance question, but in my experience it was the surgeon who placed the order for that night–and I *do* recommend spending the night–see one of my posts about needing a catheter for urinating after surgery….sorry, but it can happen though it’s apparently rare).
6. will you start me on replacement hormone the day after surgery? (the answer to this is hopefully yes–I read some things that suggested that people who start right away, which I think is now more standard practice, run less risk of going hypo and do better in general).
7. will you be testing my calcium levels right after surgery, and having me take calcium (and/or Tums) in the week following surgery? (the answer will almost definitely be yes).
8. how long do you expect it to be before I can resume my normal activities (work, exercise, etc. — in my case, a week or so, two weeks before strenuous exercise).
8. when will I need to do the hospital pre-op visit? (I had a day’s worth of blood tests and explanatory discussions about 2 weeks before my surgery–they like to see where you’re at within a certain window of time before the surgery, take you through the details, etc.).

They should have prompt and clear answers to all of the above. Good luck! I don’t regret my surgery for a minute.

lhc11

[Kimberly]

#1064611

gatorgirly – lhc11 has some great info for you on your consult. Also, I wanted to mention that going hypER after stopping the meds after just 90 days does not necessarily put you out of the running for remission. The normal course of ATDs is usually 12-24 months. If we stop taking ATDs while we still have antibodies raging, it’s pretty much guaranteed that we will go hypER again.

Many posters here have been pleased with their decision to pursue TT, so I’m not trying to discourage you…just wanted to throw that information out.

Best of luck!

[gatorgirly]

#1018412

Hi all,

After much deliberation and research since my February 2010 diagnosis, I have decided RAI is not for me. I became very sick again in May when I was taken off the PTU in order to have a thyroid uptake scan, so it became clear that remission was not in the cards for me either. The PTU is simply keeping my levels somewhat steady for now. My endocrinologist had thought that because my thyroid was not enlarged, I would be a good candidate for remission through the ATDs, but oviously not.

I have scheduled my first surgical consultation for next Friday, Aug. 6 with a local general surgeon. I need to first determine if I am a good candidate for surgery. If so, I will most likely schedule another consultation with a different surgeon – actually one who is both an endocrinologist and an ENT surgeon affiliated with the University of Florida (Shands – four hours away from me) who does approximately 200 thyroidectomies per year, as opposed to the surgeon I am seeing next week who does about 50 per year. I just started a new job with a hospital in town, and will have amazing health insurance and benefits starting Jan. 1, so I will schedule the surgery to take place after the new year.

To those who have had the TT, or met with a surgeon to discuss TT as an option, what questions do I need to be asking the surgeon?

[James]

#1064612

My experience of coming off of ATD’s too quickly was similar to yours gatorgirly. I wasn’t really encouraged by my specialist to even try pursuing the ATD option, because he thought I wasn’t good candidate for remission ever. I too don’t want to discourage you from something you have set your mind to, but rather point out that it that you really aren’t that far along in your treatment process. It’s great that you are so involved in looking at your options so carefully. Not all patients are as diligent as you are, especially when it comes to ensuring that you source a good surgeon. I think ihc11 has done an excellent job in providing you with some great questions to ask.

Best regards,

James

[snelsen]

#1064613

Hi gatorgily, thought I would add my experience to the other posts.
I pretty much walked your path, made my decisions, never looked back. After reverting back to hyperthyroid, toxic state each time PTU was stopped, I wanted to move ahead, have the surgery.

I had no interest in bouncing back and forth anymore than I already had. I was not interested in being on ATD’s long term, period. The surgery seemed so much more definitive to me.

I had the ATD’s before the surgery, so of course I was not hyper when I had it. I felt very calm and settled with my decision. YOu have done your own research, and lhc11’s list of questions is great. If you read her posts regarding her post op course, that will be helpful, too.

I did fine, throat a little sore, neck a little sore, more tired for a week or two which I attribute to the general anesthesia after-effects. I really enjoyed soups, things that I did not have to chew a lot for the first week or so.

Regarding the incision, people either have the kind of skin that tends to form a more pronounced scar from the incision..or they don’t. My incision is not evident at all, unless I point it out to someone. From my work in a hospital OR, I have found that surgeons take special care when they close the surgical site.
In my experience, I felt great after the surgery, I was euthyroid for over 30 years, with no need for Synthroid. Now I take Synthroid, occasionally the dose is tweaked depending on the labs and how I feel.
I think you will do very well. Look forward to more posts from you.

I developed TED many, many years later. Now I am ready for the eye muscle surgery, and really looking forward to having it.
Just a small number of people get TED, so it is a non-issue for most people.

[lhc11]

#1064614

I wanted to add a small follow-up point that has nothing to do with your question, but that might be helpful to you and/or others after surgery. Everything went great for me, but about two weeks afterwards (!) I had a strange off-and-on experience of feeling shortness of breath, not connected to exercise or exertion (though possibly connected to humidity/heat); I posted about this elsewhere on the board but I don’t think I ever followed up about it. At any rate: I would feel like I wanted to breathe in very deeply, but that when I did, it wasn’t satisfying me, and at one point I panicked about it, which of course didn’t help matters. It was very strange–my throat was not obviously constricted or swollen, and my endo tested and I was 100% oxygenated and my calcium levels were normal. The only thing that helped was massaging my scar as soon as the shortness of breath came on, something I never would have suspected would help (though I was massaging it for healing purposes on a regular basis), and that my surgeon’s nurse recommended when I reported my symptoms; as she pointed out, when they remove your thyroid lots of healing tissue "fills" the space it was in, and that can produce some weirdnesses for some people. In retrospect I think my throat felt tighter than I realized as the tissue/scar was healing, and something about that made me *feel* as if I wasn’t getting enough air even though I actually was. The issue only lasted, off and on, for maybe a week, so it’s no big deal–just alerting you in case it happens. This is NOT to say that if your throat feels constricted at all after surgery that you shouldn’t call your doctor, because you *absolutely* should–there is always the (very rare, if you have a good surgeon) possibility of infection/blockage/etc. that might need to be checked out.

[hoochie]

#1064615

Just wanted to give my two cents worth. I had a TT April 2007. Surgery lasted about 2 hours. In recovery room maybe 1 hour, then off to my room in the hospital. I spent one night in the hospital. I had very little pain after the surgery. The only complications I experienced was a loss of my voice for about 3/12 weeks due to my left vocal cord was paralized. I had to go to and ENT doctor who put a scope down my throat to confirm that. My voice slowy came back. My scare is barely noticeable, maybe 2 inches at the most. I do now have TED, due to the Graves. I felt so much better after the surgery, I couldn’t believe how bad I felt before. My hear no longer pounded out of my chest, and I wasn’t burning up all the time. So I wish the best for you. Just make sure you ask all the questions as others have posted here. Best of luck to you:)

[cynthia]

#1064616

my surgery is monday yea queston how do you get TED after the surgery??? Is it because the autoimmune goes on??? is there anything else I can get ha ha hopefully I don’t have that to look forward to hope all are well cb

[Kimberly]

#1064617

Hi Cynthia – You are correct…the surgery will correct your hypERthyroidism, but it will not address the underlying autoimmunity. And TED seems to run on its own weird schedule. Some patients have to deal with TED long after their hypERthyroidism is resolved…and others actually have eye issues without being hyperthyroid.

One study that I read posed a theory (and keep in mind that this is just a theory and has not been proven) is that there is an association between TED and patients who are allowed to go too hypO after RAI or surgery. So you definitely want a doctor who will work with you to find the right dose of replacement hormone following your surgery.

Best of luck!

[cynthia]

#1064618

thanks for the info.. qestion ? I know the severe symptoms of ted but what are the starting symptoms???? recentily my eyes are sore and tired not sure what is going on ???? also have question about ptu can it make you feel like you have the flu not fever but just feeling like crap ( sorry ha ha could be worse ) am hoping I will not feel like this after surgery it is really hard in the am or after sleep????? my surgeon is putting me on 100 mcg of synthroid after surgery is that a normal dose????? am so excited about my surgery on monday can’t wait it is like christmas my hopes are high for a recovery so I can live again do feel like I have lost the summer and love it with my grandkids I took my 3 grandsons to blue bayou wed. ( water park) planed to just sit and veg which I did but need wheel chair to go any distance it was very funny my 51# 7 year old grandson insisted on pushing me and I am a big woman !!!!!! he was breathing hard but refused to let anyone else push ha ha love them so much…. 3 grands in football and I make myself go to practice it is really great just sit and watch and talk to grown ups games start in 2 weeks and I don’t want to miss so hoping I can get a little stronger all please give a little prayer for me thanks and hope all feel well cb

[Kimberly]

#1064619

Hi Cynthia – I’m not sure about "flu-like symptoms", but one of the patient warnings with PTU is to contact your doctor if you experience fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of your skin or eyes. I know that you are having surgery soon, but if this is what you are experiencing, a call to your doctor’s office might be helpful.

Your dosage of replacement hormone is specific you your personal situation and factors in age, weight, whether you have any other medical conditions (such as heart issues) and whether you are taking any medications that might interfere with absorption of the replacement hormone. The initial dose is basically an "educated guess", and will likely need to be adjusted based on blood test results over the next few weeks and months.

As for eye symptoms, initial symptoms often include swelling, eyelid retraction, tearing, sensitivity to light, and a gritty sensation in the eyes. However, *most* Graves’ patients have at least some eye involvement, and there is really no way to tell who will progress on to having more serious symptoms such as bulging of the eyes, double vision, and optic nerve compression. (Although we do know that the patients with the *worst* TED are most often smokers).

Best of luck next week!

[cynthia]

#1064620

thankfully don’t have any of the symptoms you mention not sure what is up with me but will see it could be acute RA symptoms??? they also are flu like with out fever??? anyway will see after monday sometimes it is hard to sperate your illnesses!!! or side effects of meds…. looking forward to monday cb

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