[adenure]

#1059102

Hello all,

So, yes I have Graves. Some of you know I was on methimazole for 7 weeks and it was damaging my liver. I have been off of it for 1 month now and (as of last week) my TSH was in normal range. My surgery is schedule for the 12th. My endo. is trying to get me to do RAI. He doesn’t think doing surgery is a good idea because it’s more dangerous, more complications can arise. He really seems adamant about the RAI. The nuke dr. I saw said I’d have to be done lactating and then wait at least 3 months before being treated so that the radioactive iodine wouldn’t pool in my breast tissue. So, even if I weaned now, it would be at least 4 months before being treated. My endo. said he never heard of that and if I want the RAI, he’ll find me a doctor who will treat me (??). I mean, if RAI could possibly cause breast cancer bc of my lactating, I don’t know- that doesn’t sound so good. Yet, me endo. is pushing the RAI big time.

I was set on surgery, but now I feel like I’m going against him & I don’t want something bad to happen. I met the surgeon. He is an ENT, the chief of surgery and operates a lot on thyroid cancer patients & removes a lot of thyroids. I felt confident about him. His advice to me was to avoid surgery if I can bc of the same reasons my endo. put forward. Geez. I thought surgery was a viable option?! I’m really upset & overwhelmed & don’t know what to do.

Alexis

[adenure]

#1172151

Also, when do you normally start the thyroid hormone medicine after surgery? My doctor said he’d do blood tests 2 weeks after? It seems like a long time.

Alexis

[catstuart7]

#1172152

Alexis, so what made them decide it was Graves for sure? I’d be really frustrated in your position too. My endo told me that thyroid surgery is “minor” if that helps any – there seems to be a range of opinions. What are the specific risks that they are telling you about surgery? One idea I had reading your post was that your endo probably has very little experience with patients having thyroid surgery for Graves given his strong preference for RAI (hence the labs in two weeks thing) maybe your surgeon could recommend another endo he works closely with for a second opinion?

[adenure]

#1172153

It was the scan numbers that he based it off of. I guess thyroiditis numbers are less than 4% where mine were 19% & then 34%.

As far as risks, I guess it’s the idea that I’m a Graves patient and that poses risks. The surgeon likened it to driving on a sunny day compared to driving in the fog. Something about the vascularity of the thyroid can make it harder to navigate or something. I would be taking potassium iodine drops 7 days before surgery to help with that I guess- along with 1/2 an Atenolol for heart rate. Although my heart rate is in the 70s if I’m resting. Lately, it’s been higher due to all this stress & anxiety about everything though.

As far as another endo., I have Kaiser. So, I’d have to stay in that office. I could go to another endo. I guess, but I’ve talked with other surgeons just to get opinions, and the few I’ve talked with say my endo. is very good. I don’t doubt that, but it’s hard to hear how I should be reconsidering surgery. I really had that in my mind as the way to go- even before I found out the methimazole was causing me problems.

When does a person usually start the thyroid meds. after surgery?

Alexis

[Bobbi]

#1172154

Hi, Alexis — surgery is a viable option for some patients. But one size doesn’t fit all. Just as you were unable to take the antithyroid meds and other people are, your doctors both seem to be telling you that you should be avoiding surgery.

I truly do not know about the breast milk issue. I’ve never encountered the issue in all my years monitoring this board. I do hope that you and your doctors can determine a good course of action for you.

[adenure]

#1172155

Yes, I know, but I don’t understand WHY. The answer to why from my endo. was that RAI is less invasive, less variables with nurses etc and that on Graves patients, thyroidectomies are risky. As he said, “If it were my wife, sister, I would encourage her to do the RAI.” But, people do get thyroidectomies because they have Graves, right? I understand the reasoning behind having your hormone levels stable for surgery. I’m getting weekly blood work to check that and so far, my levels are normal. So, why?

Plus, it seems odd that my endo. is willing to find a nuclear doctor who will give me the RAI if one won’t due to me lactating. I mean, if one won’t do it because of the possibility of iodine pooling in my breast tissue, why should I accept it from another doctor? Doesn’t it pose the same problem regardless of who prescribes it? I don’t get it.

Alexis

[snelsen]

#1172156

Hi, I think catstuart made a valid observation about your endo. He probably trained at a place where there was more RAl. From my view of reading your posts, you have thought this through very carefully, and you have very good reasons for choosing a thyroidectomy. I almost think that the endo may have told the surgeon to discourage you.
Taking the KI drops is part of the prep pre op. it shrinks the tissues of the thyroid gland, makes it less vascular. Aside from the fact that it tastes terrible it is no big deal.
To answer your specific question, I began taking Synthroid a couple weeks, maybe three, after surgery. I felt great.

You can get well a lot fast faster with a TT. Plus it seems that it is quite a big concern that it would be to be untreated all that time waiting to be done lactating. It would be downright dangerous for you to be untreated for hyperthyroidism for three months with the RAI plan.

I know you are so tired of all of this, but can you ask for the name of a general surgeon at Kaiser who does TT ‘s? Or, perhaps at your hospital TT is the territoryod the ENT doc. I am more familiar with general surgeons doing them. You doc sounds like he is good,has done a lot of them.

Gosh, I sure can understand your worries about this. But it does appear to me that you have chosen a TT, you have thought that for a long time, that you have a surgery date of June 12, and probably plans for help for that time. I think your heart rate will decrease when the stress decreases, and the beta blocker is there for you if you have a rapid rate that is hyper related. I sure hope this gets resolved for you soon.
Shirley

[snelsen]

#1172157

Alexis, I meant to tell you that the standard of care when I had my thyroid surgery was to leave a little bit of thyroid tissue,hoping the glad would make the right amount of hormone. So my path of taking Synthroid is a bit different. I began taking it, then was a little hyper, stopped for a whole, was hypo, began again, have been on or ever since
Now, the do a TT, cause it is much easier to know where you are with the dose of the med. this does not apply to you at all, but wanted to mention it.

[adenure]

#1172158

I know the general surgeon’s name who does the thyroid surgeries, but I have no idea if he has a date sooner than the 12th- probably not. Again, time is a bit of the essence here as I’ve been off methimazole 1 month and have managed to stay within normal range. I don’t know how long I’ve got for that. If I start to go hyper again, I will seriously have to reconsider surgery and roll the dice with RAI and lactating I guess- but I’m REALLY hoping it doesn’t come to that. I asked for a specialist for the surgery since I thought he would have more experience than a general surgeon. Again, I don’t know that there are a lot of Graves referral for thyroid surgeries, but I do know that this surgeon specializes in thyroid cancer and seems to know his stuff. I understand his approach of “if you can avoid me, you should.” ie… if you can avoid surgery, you should due to it being invasive and having risk complications and all that, but he also said that if surgery is needed, he is the guy. There’s something about a slightly arrogant surgeon that is comforting. I’ll leave bedside manner to the nurses.

Believe me, if I wasn’t lactating, I would consider RAI, although I’ve always leaned towards surgery for some reason. Yeah, waiting 3 months just doesn’t seem wise.

Alexis

[adenure]

#1172159

Got my labs back from yesterday (1 month off methimazole) my free T4 is the same as last week- steady & low. My TSH has gone up again- now it’s 1.28 (from 1.17 last week and 1.14 the week before). If I am off methimazole more time, yet my TSH keeps going up (although minutely), how is it that I have Graves? I emailed my endo. today with that question along with asking him about why his fellow endo’s in the office thought there was still a possibility for post partum. The doctor I talked to while my endo. was out said the patchiness in my scan and an increasing TSH would be indicative of thyroiditis. So….. if my TSH is slowly increasing week by week, what gives? I hate to be a pest to my doctor, but taking out a thyroid is a pretty big deal if you don’t have to.

Alexis

[Bobbi]

#1172160

Hi, Alexis:

People who have Graves can have fluctuating thyroid hormone levels. Antibody levels rise and fall for no well-understood reason. Sometimes our symptoms go away long enough to be called a “remission.” Sometimes, they change more frequently and the patient’s dose of ATDs has to be adjusted more often than other people need it done. It doesn’t mean they don’t have Graves. It just means that their antibody levels are more volatile.

[Kimberly]

#1172161

Hi Alexis – Just a quick note about RAI and breast-feeding…the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists recommends waiting 6 weeks until after lactation stops before being treated with RAI therapy:

“In breast-feeding women, radioactive iodine therapy should not be administered for at least 6 weeks after lactation stops to ensure that the
radioactivity will no longer be actively concentrated in the breast tissues.”

You can check out the full guidance in the “Treatment Options” thread in the announcements section of the forum.

[adenure]

#1172162

Thank you for the information. I appreciate it!

Alexis

[paleblue]

#1172163

I would try to get more information. Patience is okay if your thyroid levels are not high. I might get a copy of my labs and get another opinion. That’s me.

Recently I have had so many situations where doctors recommend something a little extreme, and I proceed slowly and judiciously, and the situation works itself out.

You numbers may suddenly shoot back up into the hyper range, but as of now, you don’t know. As long as you treat the doctors respectfully, because they may end up being correct, I think getting another opinion, and a little patience in your situation is a good way to go.

This is just one opinion of a lowly patient! But it never hurts to get more info, and as long as your levels are not out of control, I think a little time could be helpful. Best!

[adenure]

#1172164

Thank you- believe me, I want to do that very much, however… because I can’t take the ATD’s, if I do go hyper, my ability to control the Graves is pretty much out the door. That’s what makes this tough.

Alexis

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