[emmtee]

#1058810

This afternoon, I finally got to meet with a surgeon who I had hoped would do my thyroidectomy. I was having a bad day. I woke up with a migraine and a backache, so I had to pick one to take something for. I went with the ibuprofen for my back and went back to bed. When it was time to get ready for my appointment, I still had a migraine and was really tired. I got ready anyway and headed to the surgeon’s office. I filled out paperwork and waited a full hour before I saw him. It was a complete waste of time.

I could tell that he had already formed his opinion before he even saw me. He felt my neck and then started telling me some things I already knew and some things which I know are not true. The only thing new I learned from the appointment was that removing a thyroid for Graves’ isn’t the same as removing it for other reasons because it’s larger and therefore more complicated. I already knew the risks of surgery. I already knew that RAI is safe. He said that you only need to stay home for a couple of days after RAI, and I know that that’s not true. He asked why I chose surgery over RAI and I explained that I needed to get back to normal as soon as possible, and with RAI it takes too long for the thyroid to die. He said it doesn’t take very long, and I know that that’s not always the case.

He started talking about RAI again, and I told him that if I don’t have surgery then I’ll probably just stay on the methimazole. He said he recommended against that, and started listing the possible side effects that I already knew about.

I finally told him that it’s clear that he’s not going to do the surgery, so there was no point in my being there. Then I picked up my purse and left.

Tomorrow I’ll start making phone calls. I’ll leave a message for my endo asking if she knows of another surgeon who would do a thyroidectomy for a Graves’ patient. If she doesn’t, I’ll stay on drug therapy for a while and see how it goes.

[CMoore416]

#1170123

How long have you been on meds? I know my thyroid was bad bad bad but now is good after 4 years on PTU. I went off meds one year ago

[emmtee]

#1170124

I was just diagnosed in the beginning of October and started the meds at the end of November. I had a blood test right before the new year and I’m still hyperthyroid so my endo doubled my dose starting last week.

At my first visit with my endo, she told me she didn’t think I’d ever have a remission because my thyroid is so enlarged. That’s okay – I’ll be satisfied just to get my Graves’ under control for a while so I can get on with my life.

I’m just very frustrated today because my endo was pretty good about letting me chose the treatment that I thought was best for me, and then this surgeon acted like RAI was my only option. If that was the case, my endo would have said so. If I wanted RAI, I could have had it 6 weeks ago. Now I’ve invested these 6 weeks in drug treatment in anticipation of surgery. If I chose RAI now, I’d have to go off the drugs for a while beforehand. That would waste even more time.

Tomorrow (today, actually because it’s 2:00 a.m) I have an appointment with a dermatologist. I have a spot on my leg that I suspect may be from the Graves’ Disease. Hopefully this visit will go better.

[Bobbi]

#1170126

Emmtee, I would suggest that since you seem to like your endo, you discuss with him/her what the surgeon had to say. Keep in mind that the surgeon was turning down a fee, turning down work. Why would a doctor do that? In my mind, it was because this surgeon thought that surgery was NOT your safest alternative, and did not want to be responsible for an adverse consequence. Surgeons do not typically turn down reasonable work. They tend, overall, to be supremely confidant individuals. I would very seriously reconsider my options if a surgeon told me surgery was not safe for me. This particular surgeon thought that RAI was your safest bet. You did not want to hear that, but it may be the reality that you face. There are very good medical reasons why different patients should choose different treatment options. What is safe for one, may not be safe for another.

As to staying away from other folks after RAI. Unless you have had a massive dose of RAI — the size that thyroid cancer patients (but not us) get — then, yes, you might have to stay away from others for longer than a few days. I did not have to stay away from my husband at all. I just needed to keep a space between us for a couple of days. Small children and small animals require a bit more caution. We cannot hold them up to our neck area for at least a week. But that does not mean we cannot be in the same room with them. I think you have pulled some questionable information off the web about RAI.

I understand how disappointed you are. Once we make a decision about treatment options, having it denied is frustrating. I hope you and your doctor can get you feeling much better, soon.

[Kimberly]

#1170125

Hello – Keep in mind that thyroidectomy for Graves’ is best performed by a surgeon who has specific expertise with Graves’ patients. You might have had a consult with a surgeon who primarily sees thyroid cancer patients.

There was a study done out of University of Wisconsin last year showing that surgery as a front-line treatment for Graves’ is an effective treatment option, and has a fairly low complication rate. However, anytime you are dealing with surgery, there *are* potential complications to be aware of.

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

http://www.med.wisc.edu/news-events/news/thyroid-removal-is-safe-and-effective-for-graves-disease/30620

If a doctor can give you specific reasons why surgery is not a safe alternative in *your* particular case, then that should certainly be taken into account in making your decision. However, since this doctor’s concerns seemed to be more generalized, perhaps getting an opinion from another surgeon who has specific expertise with Graves’ would be helpful prior to making a final decision.

[gatorgirly]

#1170127

Hi Emmtee,

I sort of experienced what you described. I work in health care, and had a great professional relationship with a reputable surgeon in town who does many thyroidectomies each year. However, when I went to him for my thyroidectomy consult, he pushed me to prove to him that the surgery was better for me than RAI (we knew meds were not going to be a cure, just delaying the need for surgery or RAI). He explained it wasn’t his job to convince me to have the surgery, but my job to convince him to do my surgery. I respected this approach. He said being that I was 25 (27 now), the risk of surgery outweighed the risks of RAI. He was concerned about me missing a lot of work to recover, possible changes to my voice, and the obvious risks involved in any surgery. In the end, I decided RAI was best for me, but I think your surgeon was right in his insistence but wrong in his approach. He was wrong that RAI doesn’t take long (I’m living proof – it took me 22 weeks to go hypo) but everything else you described sounds valid. Like Bobbi sent, it’s probably not what you wanted to hear, but for the surgeon to turn down a surgery that would make him a good chunk of change, it sounds like his decision was ethical. There are plenty of doctors who will perform frivolous surgeries and deem them medically necessary just to get the insurance check.

The bottom line is you want surgery. If after getting a second, third and fourth opinion, you still cannot find a surgeon who will operate, then you might consider why they keep saying no. Until then, stick to your guns. I decided from Day One that I would have surgery…not gonna lie, I love cool scars. When I eventually found a surgeon four hours north who does them through the armpit with no scarring, I still wanted surgery. When they both told me surgery was an unnecessary risk for my particular case, I went with RAI. Neither refused to do my surgery, but recommended otherwise. But only after long, careful consideration and weighing the pros and cons of both treatment options.

Heed Kimberly’s advice and find a surgeon who does thyroidectomies regularly, preferably for Graves patients. I don’t know what the magic number is, but the waiting room will be a good indicator. I walked in on the day of my first consult and saw two women with postsurgical bandages on their necks – one had thyroid cancer and the other had Graves. Even though he is a general surgeon (the one out of town was an ENT surgeon who specialized in neck oncology and endocrinology – even better!), he had enough experience with Graves and thyroid disease patients to fit my bill.

Good luck in your decision, and best wishes for a speedy recovery!

[snelsen]

#1170128

I would like to echo portions of what others have already written in their posts.
My thoughts:
-I cant agree with a comment that he is a surgeon and he must have good reasons for what he said, and was thinking of your particular situation. I am more inclined to think he does not like to do, want to do, or is not confident doing, this procedure. Probably a gift to you that he does not want to do it.
-he is a surgeon, and therefore has very little reliable knowledge about RAI, and has no right to explain an entirely different procedure to you that he does not do, and does not represent.
-he may not do very many thyroidectomies, or does not like to do them.
-I see nothing in what he said that showed any interest in you.
-I question his knowledge about thyroidectomies for Graves’, for part of the pre op preparation is to take potassium iodide (usually) 7 days before the surgery.
It is given to people who are hyper, but proceeding with surgery, to reduce thyroid hormone production and reduce the vascularity of the thyroid gland.
Frequently, if the person is already hypothyroid, the need to do this decreases.

I am happy to provide a reference for the above if you are interested.

I encourage you to check with your endo about surgeons who are known to be familiar with Graves’, and who do at least 50 procedures a year (learned that at last year’s conference, but it makes good sense.)
(I cant get the cursor where I want it to go, and part of the screen is covering up my post!!!)
I wanted a thyroidectomy for exactly the same reasons you do, and it
perfectly. I wish you luck in your explorations!
Shirley

[emmtee]

#1170129

This surgeon (I’ll call him Dr. X) was recommended to me by an attending (Dr. D) at the specialty clinic of my local hospital. It’s the best hospital in the state, and I’ve gotten really good care there. Dr. D told me he hasn’t done a thyroidectomy in 5 years, but that Dr. X does them all the time. (Dr. X is in private practice, but has an office in the same medical building.) In retrospect, I think Kimberly is right – he probably works on cancer patients, not Graves’ patients. I think that he didn’t want to do the surgery because he knew he isn’t experienced at thyroidectomies for Graves’. It would have been nice if, when they received my paperwork, they had called and told me that he wouldn’t do the surgery instead of requiring me come all the way down there when I felt like hell.

As to why he gave me the speech about complications and RAI, I think it may have had to do with the female medical student he had with him. He was putting on a show, letting her see how knowledgeable he was. He was a bit taken aback when I left before the performance was over.

I have another issue that influenced my decision to have surgery. I have a surgical wound that is still unhealed after 8 months, including 6 weeks with a wound vac. I believe that my hyperthyroidism is hindering the healing and my endo (Dr. P) agrees. (Of course, Dr. X didn’t think so.) I haven’t worked in the last 15 months due to illness, and when I do go back to work, I will likely lose my insurance for a while. So it’s important for my wound to be healed and my Graves’ to be under control as quickly as possible. That’s why I chose surgery – because it will get me well the fastest. Drugs are my second choice. The main issue I have with RAI is the rollercoaster ride afterward. If I could be guaranteed that my thyroid would be killed off and my replacement hormone dosage stable in, say, 2 months, then I would consider it.

I saw the dermatologist today. The spots on my leg might be early pretibial myxedema, or they might be something else. The treatment is the same for both and the only way to say which it is would be a biopsy, so we’re just going to treat it and not worry about what it’s called.

I stopped by the specialty clinic (where I see my endo) and told the nurse about my visit with Dr. X. She’ll leave a message with Dr. P asking if she recommends another surgeon and letting her know that my second choice is to stay on meds.

Then I called my insurance company to verify that they contract with the wound clinic and find out how to get a referral. I need to get it from my PCP, so I made an appointment for next Thursday.

[CMoore416]

#1170130

I think you need to give the meds longer time. I didn’t see results unto a good year on it. Then I stayed normal for 3 more years then came off and have been good. I felt so much better to when it regulated. I know that they want to do surgery as a last option but I know several ppl who RAI didn’t work in one try. I know it sucks dealing with it all all!!

[emmtee]

#1170131

I know I couldn’t have surgery anyway until my labs are normal. After about 5 weeks at 20mg per day, my TSH is still low and my T3 and T4 are still high. (I don’t know the numbers, but the nurse will be mailing me the lab results, so I’ll know soon.) Last week, My endo doubled my dosage to 40mg per day, so I’ll have new labs done in a few weeks.

Even though my levels aren’t normal yet, I’ve seen a lot of improvement. My blood pressure is way down and I don’t have tremors at all now unless I’m extra stressed. I haven’t lost my Christmas weight (which I’m choosing to view as a positive for now) and best of all, my eyelid retraction has improved.

[emmtee]

#1170132

Just got a call from my endo’s office asking me to come in tomorrow. I wonder what she wants to tell me that can’t be relayed in a message. 😮

[Kimberly]

#1170133

WOW, that’s frustrating! You’d think they could have given you a general idea of what they wanted to see you about. Keep us posted!

[snelsen]

#1170134

Maybe he actually wants to set up good and clear communication???? Maybe.
Glad you like him. It is hard, as a patient, when doctors make referrals, we rarely know the back story, if they are best friends, or they owe someone a referral as a favor, or if they genuinely do know which surgeon is the best choice based on the proposed surgical procedure in question.

When you go today, be sure to sign a Medical Release of Information form, requesting that all labs and visits be sent to you for your home medical file.
This release of information is needed, because you are requesting your own personal information, and offices legally cant release it without your permission. On some occasions, someone will print out the labs, no big deal, if there is a reliable relationship between patient and provider. But best way to make this happen is what I have suggested.
I encourage all patients to do this with all doctors.
I look forward to hearing from you after this appointment.
Shirley

[emmtee]

#1170135

I haven’t been on the bulletin board in a while, but I thought I should come back and tell you how things went with my endo (Dr. P.)

I told her everything that had happened with Dr. X. When I told her what Dr. X was telling me about RAI, she just nodded, but I could tell by her silence that she didn’t necessarily agree with either what he told me or the fact that he was speaking out of turn. She said she had spoken to Dr. X, and he said he would do the surgery if I really wanted it. I told her, “Absolutely not! If HE isn’t comfortable doing the surgery, then I certainly don’t want him doing it.” She said she didn’t know of any other surgeons in the area who do thyroidectomies for Graves’ patients, and I told her I’m happy to stay on the methimazole for now. Honestly, though, I feel a little deceived. I was told surgery was an option, and as it turns out, it really isn’t for anyone in my area.

BTW – I went to see my PCP a few weeks ago and saw Dr. X as I was getting off the elevator. I could tell he recognized me, but we both just looked away. 😮 My PCP is on the same floor as Dr. X. From now on, I’m going to use the elevator on the other side of the building.

Also BTW – I started going to the wound clinic a few weeks ago and my nurse the first day happens to have been my nurse in the hospital last April. I was telling her how I had been doing and mentioned my visit with Dr. X. As soon as I brought up his name, she made a face. She said he’s a good surgeon, but he’s not good with patients. So I guess it’s not just me.

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