[Talley]

#1060048

Hi there;

I’ve been reading the other posts regarding their “prep” prior to TT and am concerned that I have none.

The TT was added on to a surgery scheduled to remove a tumor behind my clavicle. While at the consult the surgeon suggested we do the TT now while he is “in there” so I don’t need to have it later…I talked with my endo and he agreed – especially if the tumor ends up to be cancerous it would have been better to have the thyroid out before other treatment.

Anyway, I have never been stabilized on my methimazole, my labs are still quite “bad”. My endo had me increase my meds while in Italy (although I’ll admit I forgot them quite a bit).

I feel somewhat “rushed” right now – I need to get the tumor out and checked for cancer – this process has gone on too long. However, with out trip to Italy, I’m concerned that I didn’t ask all the questions I needed to and surgery is scheduled for Tuesday.

Has anyone else had a TT without being stable on meds or any of the other prep that others have done?

Starting to get a bit worried about Tuesday…thank goodness my mom is flying in to help with the kids (and my husband:))

Thanks much!

[snelsen]

#1179935

Hi Talley,
I am so happy for you that you proceeded with your wonderful trip to Italy.
Welcome back. But you are back to a lot of big stuff.

Well, as you know, I am another fellow patient here, but the following is a conversation I’d have with you if we were sitting in a coffee shop, as friends with common experiences.

Wow. I can appreciate your concern. This is a tough one. Tuesday is coming right up.
It is hard for you to evaluate this, for you have the agreement of both doctors.
And, on the surface, this “makes sense” to go “in there” once, and get it all done. On the other hand, it is your body and your health, and you want to be sure this decision was made with the proper thought by the docs, and not because you will be in the OR for the clavicle procedure. That does give me pause.

But I share your concern and reservations, and they may exist because this decision was kind of an afterthought, and you did not have enough time to ask questions, and/or know what questions to ask.

I am concerned that the chances of getting the information you need to know and understand in the one remaining day before your procedures, are slim to none.

My own experience, and the experiences of others on the forum, as you have read, is to take the SSKI drops approximately a week before the surgery, for the reasons described recently. One of the main reasons is to reduce the size and vascularity of the thyroid gland

The other information you don’t know, is how many thyroidectomies this surgeon routinely does. It is suggested by surgeons at the NGDF conferences I have attended, that it be at least 50/year.

I do not know what you have learned about the length of the surgery, or degree of difficult of removing the growth from behind your clavicle, and I do not presume to know anything at all. But, from my own personal experience, from working in an OR for a number of years, in the great scheme of things, it seems like it is a more minor procedure, rather than a big time major procedure. Did the surgeon discuss that with you? Like the length of surgery, the post of recovery time, and all that stuff?

If you decide to proceed with both, I think you will feel more at ease if you call the surgeon’s office Monday, and tell the people who answer the phone, that it is URGENT that you hear from the doctor to answer your additional questions about the TT. And one of should be the potassium iodide drops pre op question.

***AND, I do not mean to add to your stress, but you should also inform him that you have not taken your methimazole consistently in the past couple weeks. This is something the surgeon and the endo should know.
Tally, you really have to plant in your head to take these med without fail, they cannot be skipped. The ramifications are potentially huge, and will continue to be as you take thyroid replacement the rest of your life.

If you think about it this weekend, and you are feeling pretty ok about this plan, and want to go ahead, I do suggest you call and make an effort to get your additional questions answered. AND-the surgeon should know that your forgot your methimazole quite a bit. It may be fine, and/or he/she may want to postpone the TT surgery. I say this, because otherwise, neither the surgeon or the endo have any reason to assume anything other than that you have taken them regularly, as prescribed, with the increase in the dose.

I wish you the best of luck with all of this, and keep writing to us.
Shirley

[SueAndHerZoo]

#1179936

Wow, this is a tough one and I SO WISH you had more time before your surgeries. I agree totally with everything Shirley said and it’s hard for me to write this reply because on the one hand I want to express my thoughts and concerns but on the other hand I do not want to scare you and add to your stress.

I hate the fact that your TT is being looked at as “secondary” and almost an afterthought. I hate that it seems to be that the primary purpose of surgery is for the tumor and “while we’ve got you under, we may as well grab your thyroid, too.” Yes, there are some practical reasons to do both at the same time, but only if both surgeries are being taken equally seriously and with the utmost attention to detail to BOTH surgeries.

Perhaps my surgeon was over the top with the time she spent and the precautions and tests she performs before surgery, but then again it’s Yale so I wouldn’t expect anything less. Before I even met her she had contacted my endo and had my entire file in front of her and examined the past 6 years worth of records. She told me she would not have agreed to even consider surgery if my labs were not currently in the “normal” range, and she stressed that even though they are “normal” she wants to doubly ensure there will be no complications or risk of thyroid storm or bleeding by shutting the thyroid down even more with 7 full days worth of SSKI drops. When I showed a little concern about why she insisted on the SSKI she told me that she does that with EVERY patient, and that it’s not that mine is at extra risk but that she wants to take extra precautions so that there will be no issues during surgery. The smaller and less inflamed the thyroid is, the less chance of nicking the parathyroids or vocal cords, etc.

She explained that the average TT takes her 2.5 hours but stressed to my husband that if she’s not out to speak with him at exactly 2.5 hours that he should NOT worry – it only means she is being meticulous and careful to only get the thyroid tissue she needs to and not anything else. I have no way of verifying it but she and her nurse stated (separately) that in the 5-10 TT’s she does a week, she has never had an issue of any type.

I guess my point is that any surgery is nerve-wracking for the patient. I am totally and completely comfortable with my surgeon but will, of course, still be nervous. In your case, you do not feel that total confidence and I sympathize and feel badly for you. This is going to be stressful enough on your mind and body for you to have the added stress of whether or not the doc knows what he’s doing.

Sorry this is so long but this is a very serious question you posed and it deserves serious attention. Is the surgeon who is doing these operations an endo surgeon? Is the same surgeon doing both surgeries or will one do the tumor and another do the thyroid?

Had you asked this a week ago I probably would have said “eh, get them both done and over with” but now that I’ve had my consult and see how much prep is being put into my surgery, I would have second thoughts about doing both at the same time.

I am so sorry that my post probably scares you even more and I thought long and hard about posting it, but I would feel terrible to have these concerns and NOT express them since we’re dealing with something as serious as surgery. This isn’t filling a cavity and deciding to extract a tooth while they’re in there……. it’s a bit more complicated than that.

I actually wonder if you should call the doctor this weekend. Even if he has someone else covering for him it would be good to hear their opinion, or maybe they would see the seriousness of your question and have your doc contact you before Monday. If you can’t do that, can you be in your doctor’s office Monday morning to express your hesitation about proceeding on Tuesday?

Please keep us posted, even if it’s just to vent. I’m sure it will all be fine, but it can only help to be as prepared as possible.
Sue

[ChristinaDe]

#1179937

Talley ~ If I were to join you & Shirley in that coffee shop for a bit of friendly banter, I’d be agreeing with everything she just said. I’d also mention that prior to my TT my surgeon was adamant that I be on a beta blocker for at least a week prior (but only because I had a racy heart) and after surgery to ensure that my heart rate didn’t shoot up during or immediately after surgery (there is a thyroid dump that they worry about after that can send heart rates up). He also was insistent that I have my Vitamin D level checked prior (mine was very low, so I went on HUGE supplementation pre-op & then had it rechecked prior to surgery). The rationale, according to him, was that sometimes the parathyroids get a little irritated during surgery, can fall asleep which makes calcium an issue. Not a big deal – it happened to me & they just gave me calcium supplements – but it’s important that your Vitamin D is in check if they need to do that. And, like Shirley said, he preferred that my thyroid level was in check…but he DID say that in cases where he has to, he will do the surgery without that piece…just needs to be more cautious due to an increased chance of experiencing a thyroid storm during or after the op – but he likes to know going into it if this is indeed going to be the situation.

So, bottom line…pre-op I was on anti-thyroid meds & beta blockers for 6 weeks (his preferred amount of time but he did say that sometimes in some patients they have to operate without that step due to drug intolerances or whatever), the iodine drops for a week (something else that he said that he has skipped if the patient was intolerant), but prefers it so he can visualize the area better due to less bleeding, had my Vit D checked and then fixed, had my calcium checked (it was fine, but if it hadn’t been it would have been fixed as well). These were all ways to optimize things (as he put it).

My surgeon is one of those that does almost nothing but surgery of the neck glands. But my case was also very different than yours. I ONLY needed the thyroid out.

There may be very good reasons why they are not, or can not, take these steps in your case. But it is worth asking about. I called my surgeon a couple of days before surgery in a general panic and he was happy to squeeze me in…said it was pretty common for patients to have last minute anxiety and questions & that he preferred they contacted him prior to surgery if they did. Maybe call first thing in the morning and ask for an urgent “squeeze in”? These are all reasonable questions that deserve more discussion – if for no other reason than to relax you a bit. And like Shirley mentioned, it is important that he know that you may not have been as religious with your meds as he may be assuming you were…he may be ok with it, but he’ll better know what to watch you for during and immediately after surgery.

Hang in there! And best of luck!!!
Christina

[ChristinaDe]

#1179938

Just saw Sue’s post & agree with her thoughts & I too am really worried about adding stress on at a time when you really don’t need it. I also don’t want to second-guess your care too much since I’m not a doctor and don’t have all the details either. But I am a patient who’s been through TT & had a great outcome. So weighing all that with wanting to make sure that you have all the information you need to get the best outcome possible…I felt compelled to speak up.

The only thing that I’d add to Sue’s comments, is that for a thyroid surgery, ENTs are great too. Most people specializing in high-volume surgery of the thyroid, parathyroid, etc. are either endo or ENT surgeons. So don’t worry any if yours is an ENT, as long as he does a lot of these. But he should be able to tell you his complication rates. The good ones don’t mind the question. In fact, they love it! Mine was an ENT, does nothing but thyroids, parathyroids, etc (is considered one of the tops in the U.S., affiliated with a teaching hospital, yada yada)…and loves bragging on the number of these he does & his nearly non-existent rate of complication!!

You are the one who will live with the outcome…not the doctor! So don’t be shy!!! Sometimes easier to say than to do. I know.

[Talley]

#1179939

Thank you so much Shirley, Sue and Christina!

I am going to email my endo right now and ask about the drops and prep. He didn’t seem too concerned when I met with him prior to our trip – just had me increase my dosage of methimazole every-other day. If we have to postpone the surgery a couple days, I am OK with it…I know the ENT and Oncologist wanted the surgery asap – I’ll see what they all think.

They need to surgically remove the tumor due to its location and can’t do a biopsy due to the location and blood vessels around it. The doctor said the surgery to remove the tumor would be 3-4 hours and would add an hour to remove the thyroid. I am not sure how many thyroids he removes (I will ask), he is an ENT and talked about this being “routine” for him.

I would much rather have my thyroid removed than to have RAI and I know I will be better about taking meds post-surgery than I have been now…my endo said he will start me on a higher level of meds since I have been used to being hyper and he wants to avoid my doing hypo…My biggest fear (yes, it’s stupid), it to gain a lot of weight. I have struggled my entire life to keep my weight down – never happy and probably pretty close to an eating disorder – more that I workout a lot to keep the weight off than anything else. This has made the decision difficult, but I know with my weight “issues” I will continue to be “bad” about taking my methimazole due to fears of weight gain, but I will be religious about taking my post TT meds due to the same fears.

I will email my endo now – wish my ENT had email available…If I wasn’t so concerned about lymphoma, I would have probably put it all off. I already have trouble swallowing due to the tumor and really want it and the thyroid gone.

Thank you again for your words…wish I could have coffee with you all – you are all amazing women. Thank you for sharing your journeys and offering support.
Talley

[brondack]

#1179940

Tally,
Like the others, I am NOT a Doctor, but I can tell you this.

I happened to be diagnosed last November with both Graves and an inguinal hernia. The Graves I never really noticed, but the hernia did cause a substantial amount of pain – so I wanted that taken care of as soon as possible.

But when I met with the surgeon, he said that he would not even schedule the surgery until my thyroid situation was stabilized for fear of thyroid storm during the surgery.

Well it took about 6 for my reluctant thyroid to finally learn to behave itself because of the methimazole I was taking and I finally had my surgery yesterday.

I am not saying that it will take you 6 months, but I would strongly urge you to talk to both doctors and make sure they agree that surgery at this time will be safe for you.

Good luck and best wishes and hope everything works out for you.

We are all here to offer whatever assistance – emotional, past experience, etc, that we can

Bill

[Gabe]

#1179941

Hi Talley, welcome back. I did not have to take any drops before my TT. I did have to continue my Meth up to the surgery and beta blocker a little while after. I agree with others that its extremely important that your surgeon conduct >50 and preferably >100 TTs annually since there is a direct correction between volume and complications. I had to have routine labs performed prior to surgery and my calcium was checked at three intervals directly after surgery….it was and is still fine.

Other than that, I won’t pile on since I’m sure you’ve got enough and have already started emailing all the questions!

I wish you the best!

Karen

[ChristinaDe]

#1179942

Talley ~ Try not to worry about weight gain. It was a huge fear of mine as well. I did gain about 5 lbs while on anti-thyroid meds, but immediately lost it after my TT. Like in a few days. I then regained those 5 lbs when I temporarily went hypo during my Synthroid adjustments. As soon as they got me to a normal level, and alongside some Pilates & careful eating, I lost that 5 lbs in a few weeks. To be honest, I did try to watch my diet the whole time…to the point of irritating my husband…but, I figured it would be easier for me to diet while hypo to keep from gaining weight, than it would be to diet afterward to LOSE it. That’s me tho. Even if you gain some weight during treatment, the #1 goal is to get better. Everything else will fall into place once you’re feeling like your old self.

If you’re anything like me, you’ll worry anyway tho!!! 😮

[SueAndHerZoo]

#1179943

I asked my surgeon if I should expect to put on a little weight after my TT and she said there is absolutely no reason I have to. She said “Just like you adjust your methimazole up or down to find your sweet spot and the place that you feel your best, you will adjust your Synthroid up or down to find what works best for you.”

I hope she’s right.
Sue

[ChristinaDe]

#1179944

I believe she is Sue!

[SueAndHerZoo]

#1179945

Talley ….. update, please?
Sue

[snelsen]

#1179946

Tally.
I know it is early in the day. Do write when you have new information to report! THinking of you!
Shirley

[Talley]

#1179947

Hi all – sorry not to update – been trying to get unpacked and the house in order before my mom gets in tonight.

I talked to the surgeon today – he was great. He is not concerned about my thyroid levels right now – said he spoke with my endo. He wants me to take a Tapazole tomorrow morning before I head in and he said the anesthesiologist will call me tonight to talk about the propranolol and other concerns. He does do a high number of TT each year – one of the primary surgeries that he does.

He is most concerned about getting the tumor out asap. he did give me the option to pass on the TT, but I can’t imagine not doing it now while I have the chance…my endo prefers RAI – which I can’t do for at least 6 months due to the recent CT scans and if there is another problem I’d have to go back in for surgery.

I am feeling “at ease” about the surgery tomorrow – thanks to comments, I’m not going to worry about the weight issue. I am sure with my endo’s help we can get my levels set. I am worried about the scar. I purchased a couple scarves today that I can wear to try to hide it…yuck.

I do have a question. The ENT said he may want me to stay on the tapazole after surgery for a few days – is that normal? My endo talked about started me on the Synthroid right after surgery…do I do both? I’ll ask tomorrow but it confused me and I didn’t ask because I was worried about my other questions and then forgot.

Thanks again…I’ll post when I get home on Wednesday since I don’t think I’ll have access in the hospital:)

[Gabe]

#1179948

Hi Talley… glad you got your questions answered. Don’t bother with the scarves… you won’t use them. The surgical site will only have a small steri-strip and anything near your neck will just irritate it. I’ve been walking around in v-necks since my surgery. It really isn’t bad. I only had to answer one young girls questions and I told her I got caught in a bear trap so we had a good laugh!

I started my Synthroid the morning after my surgery (50 mcgs of Levothyroxine) and am sure my Endo will up that at my visit with him on 6/25.

Good luck and best wishes tomorrow!

Karen

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