# Just when I thought there was progress.



## Rainey (May 22, 2013)

I was diagnosed with Graves last Sept. Finally found a specialist in Jan. of this year. Dr. said I needed RAI because he didn't like to do surgery because according to him, "The thyroid will grow back."

(I have on old post around here somewhere, but can't find it.)

For months, up until May we worked at adjusting my meds (methimozole) to get my levels up to normal, which they finally were as of May 5.

Then he took me off the meds to prepare for RAI. Within less than a week I was feeling horrible. I called the Dr. office several times, but Dr. never returned my call. I stuck it out. Getting sicker and weaker. By June 5 I was so weak I could hardly get out of a chair. (My next apptmt was June 30 - I had been off the meds since May 5).

I called once more and explained that I needed to move my apptmt up because I seriously didn't think I would make it until June 30.

I finally got an apptmt for a Rad scan around June 11, then blood work the next day, then 3 days later I saw the Dr.

After looking at my labs, he said I was not a good candidate for RAI and that even though he rarely recommends surgery, he would, in my case recommend it as my labs were dangerously off.

He put me back on the meds and increased them to 60 mg/day and sched another apptmt for yesterday, July 30.

I was feeling pretty good. Almost normal. After looking at my labs he said my labs were back to normal but that he would NOT recommend surgery and would continue to keep my on the meds for life!!!

I don't know why this Dr. is so opposed to surgery. He just keeps saying it will grow back, but from the research I've read there is only a 3% chance of that happening. This is the ONLY reason he is giving me for not doing surgery.

I left, very disappointed. I have been through hell with this Dr. for 7 months and now, after all the hit and miss, he has decided NOT to do surgery.

I will be seeking another Dr. today, but I was wanting some feedback from all of you.

Right now, I have met my annual insurance deductible. If I have surgery before the year ends, I won't have to pay out of pocket. If I continue on the meds, which are covered by insurance, if something happened and I no longer had the job which has the insurance, I won't be able to pay for the meds.

Not to mention if I end up with liver FAILURE due to the meds I will need a liver transplant!

Oh, I am so frustrated!!!! I have jumped through every hoop he has challenged me with and for nothing!!!!!

Has anyone here had an experience like this? It doesn't seem right to me that he refuses to do surgery based only on the fact that "the thyroid could grow back." I have not yet even talked to a surgeon about this because the Dr. never got that far with me.

Has anyone here been on methimozole for an extended period of time?

Thoughts please.


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## Andros (Aug 26, 2009)

Rainey said:


> I was diagnosed with Graves last Sept. Finally found a specialist in Jan. of this year. Dr. said I needed RAI because he didn't like to do surgery because according to him, "The thyroid will grow back."
> 
> (I have on old post around here somewhere, but can't find it.)
> 
> ...


My thought is for you to make an appointment with an ENT surgeon forthwith.

You have been getting the run around big time.

Has your doctor ever ordered you to have RAIU (radioactive uptake scan?) How about antibodies' tests?


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## Rainey (May 22, 2013)

Andros said:


> My thought is for you to make an appointment with an ENT surgeon forthwith.
> 
> You have been getting the run around big time.
> 
> Has your doctor ever ordered you to have RAIU (radioactive uptake scan?) How about antibodies' tests?


Yes, I am calling my original internist (the one who send me to this doc) and get him to refer me to another.

Yes, they did the uptake scan after I went off the meds for about 45 days. That was the sickest I have ever been in my life! No antibodies test, that I know of. Unless it is included in the blood test. He did say my liver was fine.

Maybe I'm making more of this than I need.

I have found where removing the thyroid can cause more problem than it corrects.

I am so frustrated and undecided.

Thanks for the reply.


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## Andros (Aug 26, 2009)

Rainey said:


> Yes, I am calling my original internist (the one who send me to this doc) and get him to refer me to another.
> 
> Yes, they did the uptake scan after I went off the meds for about 45 days. That was the sickest I have ever been in my life! No antibodies test, that I know of. Unless it is included in the blood test. He did say my liver was fine.
> 
> ...


I don't have a thyroid and I don't have any problems!!! My thyroid almost killed me. Now I am perfect and enjoying my life!

And what were the radiologist's comments about your RAIU?


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## Prudence (Oct 30, 2012)

Rainey said:


> Yes, they did the uptake scan after I went off the meds for about 45 days.


Wow, that's insane to me! I only had to stop them for about 4-5 days prior to my RAIU uptake and scans. My doctors made the appointments with the nuclear imaging department, but my docs were the ones who said to keep taking them until I got the official dates set up for the scan-and then the nuclear department gave me the date on when to stop taking the drug. Any reason given why he made you wait so long without meds? I've heard some places like giving maybe two weeks max to get a good look at the uptake, but you went six weeks or so without anything...that's very dangerous, to me. I agree about getting a second opinion.

Did he also say why you weren't a good candidate for RAI? I mean, my numbers were pretty high... but that's _why_ they gave me the RAI, to kill it off. I mean, problems can happen with any thyroid method...drugs, RAI, or surgery all have risks, but there is a very, very slim chance of a thyroid growing back after surgery. (also, long term drug use is acceptable as long as your liver levels stay good-there's been studies showing it's do-able, just something to throw out there.) Whatever you choose, you need to have a doc that will comply.


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## StormFinch (Nov 16, 2012)

My suggestion? If you want to do the surgical route, do your homework and find a doctor that does a lot of thyroid surgeries where you're located, then ask your internist for a referral to that particular doctor. I told my GP who I wanted to go see and never gave him the chance to send me to someone else. If you're U.S. based, try checking the member finder at the American Association of Endocrine Surgeons website; http://www.endocrinesurgery.org/membership/findmember.html

If your internist doesn't feel like he can monitor your meds, though some are willing to, then you'll need a new doc to do that as the last one is jacked imho. Try this blog post for resources to find a decent one; http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/ What you're current endo is doing to you is criminal as far as I'm concerned.

As far as surgery versus RAI, I've heard bad things about both. Remember that it's typically the people with horror stories that post on the internet. The people that have had successful procedures are out there enjoying themselves. As for me, I decided to take the surgery route because a) I had some eye involvement and b) I didn't want to chance having to have multiple rounds of radiation to control my Graves. I did the research, found a doctor with a ton of surgical procedures to his name, (500+ is considered experienced) had a simple, uncomplicated surgery with an easy recovery, found a doctor to monitor my replacement meds the way they should be and now have my life back.

In regard to the methimazole, from what I've read there are a number of people, mostly in Europe, that take it their whole lives. Here's an article on it; http://graves.pandapoop.net/2011/02/10/taking-methimazole-for-10-years-2/

Whichever decision you make, and this is definitely a personal one, good luck and we're here for you.


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## Rainey (May 22, 2013)

Andros said:


> I don't have a thyroid and I don't have any problems!!! My thyroid almost killed me. Now I am perfect and enjoying my life!
> 
> And what were the radiologist's comments about your RAIU?


Radiologist said, "Thank you. I will send these reports to your doctor."

That's it.  I didn't even know if the radiologist even knew anything at that point directly after the scan. And honestly, I was too weak and sick to care.


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## Rainey (May 22, 2013)

Prudence said:


> Wow, that's insane to me! I only had to stop them for about 4-5 days prior to my RAIU uptake and scans. My doctors made the appointments with the nuclear imaging department, but my docs were the ones who said to keep taking them until I got the official dates set up for the scan-and then the nuclear department gave me the date on when to stop taking the drug. Any reason given why he made you wait so long without meds? I've heard some places like giving maybe two weeks max to get a good look at the uptake, but you went six weeks or so without anything...that's very dangerous, to me. I agree about getting a second opinion.
> 
> Did he also say why you weren't a good candidate for RAI? I mean, my numbers were pretty high... but that's _why_ they gave me the RAI, to kill it off. I mean, problems can happen with any thyroid method...drugs, RAI, or surgery all have risks, but there is a very, very slim chance of a thyroid growing back after surgery. (also, long term drug use is acceptable as long as your liver levels stay good-there's been studies showing it's do-able, just something to throw out there.) Whatever you choose, you need to have a doc that will comply.


As far as keeping me off the meds for so long; he said that I had to be off them for "weeks" (unspecified) so that the scan and ultimate RAI would work. Then he scheduled the scan for 60 days in the future.

I got so sick and weak and kept calling his office (never got to talk to him) where I was told that I could NOT go back on the meds prior to the scan. After 4 weeks I literally felt like I just could not go on another day and called and told the office that he HAD to move my scan up. They finally did, which was on a Friday.

I saw him the following Tues. My levels (or one level, which was supposed to be around 1.0 was a 6.8, 6 times higher than normal.)

He said I could not stay off the meds long enough to do the RAI.

Then he told me to go back on the meds and increased the dose. Within two days I was drastically better, and now I feel back to normal.

He has said from the beginning that he never recommended surgery, but after he realized I couldn't do the RAI, he said that once my levels got back to normal, then he would sched. surgery.

This past Tues. he changed his mind and wants to leave me on the meds.

Wow! TMI???? Sorry, I got carried away.

I am sched to go back in 4 months for blood work.

I don't mind staying on the meds if that's a viable option. I am just confused about all his talk about removing the thyroid, in one way or another, but now he is not considering it because "it will grow back."

Or maybe he is leaving me on the meds because I have had such an improvement. (He was too distracted texting on his cell to really explain things to me and left it to his NP, who apparently can't even read my chart.


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## Rainey (May 22, 2013)

StormFinch said:


> My suggestion? If you want to do the surgical route, do your homework and find a doctor that does a lot of thyroid surgeries where you're located, then ask your internist for a referral to that particular doctor. I told my GP who I wanted to go see and never gave him the chance to send me to someone else. If you're U.S. based, try checking the member finder at the American Association of Endocrine Surgeons website; http://www.endocrinesurgery.org/membership/findmember.html
> 
> If your internist doesn't feel like he can monitor your meds, though some are willing to, then you'll need a new doc to do that as the last one is jacked imho. Try this blog post for resources to find a decent one; http://hypothyroidmom.com/top-10-resources-to-find-a-great-thyroid-doctor-in-2013/ What you're current endo is doing to you is criminal as far as I'm concerned.
> 
> ...


Thank you for the reply and links. Yes, I have used endo surgery dot org and there is NO member here in my area.

And yes, he seems to want to monitor me while on these meds. (I will be looking for another endo though.)

Yes, I read that there are people who are on methimozole for life, so maybe I'm just blowing this whole thing out of proportion.

I have been to so many appointments and prepared myself for RAI and then surgery and now he is just leaving me on the meds I was on to start with. Which I guess is a good thing, but getting here has been hell.

He did tell me there was a small risk of liver failure on the meds and that is what concerned me but I keep finding research where people have been on methimozle for 30+ years with no adverse effect.

It seems odd to me that the first appointment I had with him he said "RAI". Seems if meds are effective he would have just monitored me on them to start with. I'm sure he makes more money off the insurance from all the procedures than he would from just a prescription.


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## StormFinch (Nov 16, 2012)

Rainey said:


> Thank you for the reply and links. Yes, I have used endo surgery dot org and there is NO member here in my area.
> 
> And yes, he seems to want to monitor me while on these meds. (I will be looking for another endo though.)
> 
> ...


Yeah, there wasn't anyone near me either. I ended up driving 2 1/2 hours one way to see my surgeon. It was a pain, but well worth the peace of mind. If there isn't anyone even close enough to drive, start looking at ENTs like Andros mentioned. They're more experienced in working with tiny structures in small spaces, and quite a few do do thyroids on a regular basis.

Plain and simple Rainey, that endo has no idea what he's doing imho. We've had plenty of members here, each with a different doctor, that have only been off their MMI for a week or so to do RAI. I went into surgery with a TSH of 0.00 and Frees well over the limit even while popping 40 mg of MMI a day with no adverse effects.

His insistence that the thyroid could grow back is just plain weird as well. It is impossible for a surgeon to get every single piece of thyroid tissue out during surgery, and studies I've looked at say that what little remains will have some small regrowth. However, as long as you continue to take sufficient amounts of thyroid replacement regrowth should be very limited and iodine storage stabilizes at approximately 15 to 20% of presurgical amounts. There is a very small percentage (someone here said 3%?) that have had significant regrowth, but truthfully I wonder if those individuals were either being underdosed with replacement or were noncompliant which caused it. Thyroid cancer patients keep their TSH repressed exactly for that reason, to arrest regrowth.

Typically doctors in the U.S. don't like to leave a patient on MMI for more than two years, and in fact I believe the American guidelines say not to. I'm not sure if that's them being overly cautious about the tiny possibility of liver damage or the fact that it suppresses your whole immune system, but that's why they push for another solution so quickly. Speaking of which, if you decide to stay on the MMI do NOT get any type of live virus vaccines, as they can cause serious infections in combination with your lowered immunity.

Anyway, I know you have to be exhausted, both physically and mentally, after what that endo put you through. Take a little time and pamper yourself a bit. :hugs:


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## webster2 (May 19, 2011)

Look for an ENT in your area that does a lot of thyroidectomies. This guy has messed around with your health for too long.

No thyroid here for 2 years, it took awhile, but I feel great. Hang in there!


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