# Totally frustrated and hate doctors once again



## bairfrey (May 4, 2012)

I am 12 days post surgery and had my post op appointment on Monday. We already knew that I had papaliary carsinoma so wasn't surprised by what came back. There was cancer throughout the entire thyroid so it was good that they took it all. Now I'm angry I can not get into my endocrinologist until July 13. They knew before surgery that I would need RAI, now they want to start me on synthroid and I don't want to because this is just going to prolong everything. I'm going on 2 weeks with no synthroid but becuz they dropped the ball and can't get me in till July 13th they want me to start the synthroid. This will push everything back a month including me going back to work. I'm so upset, I have been crying most of the day. Any suggestions?


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## bairfrey (May 4, 2012)

I just didn't want to start the synthroid then have to stop it when they know I need the RAI. And I didn't want to go back to work until the RAI was completed and they started me on the synthroid because I don't not have any sick time left and I am current on FMLA and LTD. I don't have the time at work to go back for a month and be off again.


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## Octavia (Aug 1, 2011)

Can you call the endo's office and explain? Maybe they can squeeze you in. ???


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## bairfrey (May 4, 2012)

I tried to call and talk to someone at the endos office but the lady was really rude and told me "it's not like we have appointments readaly avaible. This is protocol." I said protocol for what? Usually they don't put someone on synthroid who's going to have RAI. She was not helpful and told me to call my PCP if I had any further questions, which she doesn't have anything to do with this doctor. She was just being a bit...


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## Lovlkn (Dec 20, 2009)

Call back again - tell them you need to be placed on the cancellation list.

Can you try to find a different doctor?


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## joplin1975 (Jul 21, 2011)

Can you possibly speak with your surgeon for a direct referral to nuclear medicine/radiology? I did not involve my endo with the RAI and it went MUCH faster.


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## webster2 (May 19, 2011)

Call and ask to speak with the endo or the surgeon. Definitely tell them you want to be on the cancellation list. It seems like the staff doesn't understand what is going on. I am so sorry you have to go through this.


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## Andros (Aug 26, 2009)

bairfrey said:


> I am 12 days post surgery and had my post op appointment on Monday. We already knew that I had papaliary carsinoma so wasn't surprised by what came back. There was cancer throughout the entire thyroid so it was good that they took it all. Now I'm angry I can not get into my endocrinologist until July 13. They knew before surgery that I would need RAI, now they want to start me on synthroid and I don't want to because this is just going to prolong everything. I'm going on 2 weeks with no synthroid but becuz they dropped the ball and can't get me in till July 13th they want me to start the synthroid. This will push everything back a month including me going back to work. I'm so upset, I have been crying most of the day. Any suggestions?


The posters have good suggestion; call your surgeon!

Let us know and I am keeping you in my thoughts for all good things!


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## jenny v (May 6, 2012)

I don't know if this will work, but I've seen it be successful twice at my endo's office--show up in person. Sometimes it can be much more effective than arguing with their booking person on the phone. While in the waiting room at my endo's office, I've seen two different people show up in person, one who "forgot" she didn't have an appointment that day and the other who just really needed to get in, and somehow, miraculously, they managed to squeeze both in.

It's probably not the nicest thing in the world to do, but when it comes to your health, sometimes you gotta be pushy! I'm thinking good thoughts for you.


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## CA-Lynn (Apr 29, 2010)

Whatever you do, let your doctor know of this treatment by the staff. Not cool.


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## JPGreco (Mar 2, 2012)

I would agree with the go in person. Nothing gets results like making a scene. How is the dr gonna react if you are making a commotion in the waiting room talking about how bad the decision was and the wait and such for a cancer patient....

The squeaky wheel gets the oil...

good luck


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## teri2280 (Feb 7, 2012)

Did your endo by any chance refer you to your surgeon? If so, I would suggest calling your surgeon, explain what's going on, and see if he/she can just do your RAI. (I understand that this isn't always possible on the patient's end, though - my surgeon is almost 3 hours away, so it just wasn't going to be able to happen for me.)

I am living proof that starting on synthroid or whatever, then going off of it SUCKS, especially if you've never been truly hypo before tt. I hadn't had an FNA before tt, but my surgeon was "99.9% sure" (as SHE put it, hence the quotes) 3 weeks before my tt that it was cancer. She knew before the tt was even complete (prelim path report from Cleveland Clinic Ohio main campus) that it was 100% for sure, but still put me on levothyroxine the morning after.

I TOTALLY understand your thinking on all of this, and can't blame you one bit for wanting to get it over and done with in one shot. I ended up taking over 5 weeks of FMLA and vacation time (3 for my tt, 2 + 2 days more because I'm one of those people who had a super bad time going hypo), and in hindsight, it would have been TONS easier to just have gotten it all over with to begin with. (Plus, I could have gotten STD through my employer.) I'd be totally normal by now, instead of approaching one week past RAI and not totally feeling perfect. (I'm back to work now, yesterday was my 1st day back, and while I'm 100% better, I'm still not at 100% yet, and know it'll be at least a couple more weeks yet.)


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## teri2280 (Feb 7, 2012)

*ADD* Had I known before my tt what I know now, I would have suggested to my surgeon not even starting on my levo, and I'm almost certain that she would have done it. BUT, I didn't know that getting used to replacement hormones and then "crashing" (I had to switch from my levo to cytomel in prep for RAI, and cyto = instant crash) would totally bite, either.

Good for you for knowing early on and doing your research beforehand!! I didn't do most of mine until I was on leave for my surgery, just because I really didn't have the time, but def. wish that I had TAKEN the time!


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## Octavia (Aug 1, 2011)

jenny v said:


> I don't know if this will work, but I've seen it be successful twice at my endo's office--show up in person. Sometimes it can be much more effective than arguing with their booking person on the phone. While in the waiting room at my endo's office, I've seen two different people show up in person, one who "forgot" she didn't have an appointment that day and the other who just really needed to get in, and somehow, miraculously, they managed to squeeze both in.
> 
> It's probably not the nicest thing in the world to do, but when it comes to your health, sometimes you gotta be pushy! I'm thinking good thoughts for you.


I like this approach!


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## bairfrey (May 4, 2012)

I need some more info so I can fight my case of not starting the synthroid. Who and how do they decide how much RAI you need? Because I could start the iodine diet now for the next 2 weeks then the 1st week in July I would be ready for the RAI.
I have called my surgeon and he is calling the endo to see what is going on. Thank you for everyone's suggestions. It helps to know I'm not doing this alone.


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## joplin1975 (Jul 21, 2011)

Mine amount was decided upon by a pre-RAI scam to see how much residual tissue was left.

Traversing dose given on Tuesday, scan on Friday, consult with radiologist/nyc med doc after the scan, therapy dose after consult, post-RAI scan on Monday.


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## Octavia (Aug 1, 2011)

Size and spread are the two big factors. How big was your tumor? Was there more than one? Were any lymph nodes affected?

The "worse" your answers are to those questions, the more aggressive they'll want to be with your RAI.


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## teri2280 (Feb 7, 2012)

In addition to what Joplin and Octavia said, I'd also read somewhere (thyca boards, I believe, but I'm not 100% sure) that your body size and weight are also factors. Whether this is true or not for some endos, I don't know, but I know it wasn't for mine (NW Ohio). Mine did it strictly based on spread - 0-4 lymph nodes involved = 100 mci, 5-8 would've been 150 mci, and 9-12 would have been 200. (I think I have the range of lymph nodes right, but I might not be 100% again, but I remember him saying it was something to that effect.) Again, this is just how my endo has done it in the past, and what HE'S had luck with. I didn't have any sort of scan beforehand, my first will be this Monday.


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## bairfrey (May 4, 2012)

Hello everyone, after a whirlwind of a week I got an appointment with my endo. Originally they weren't going to get me in until July 13th and I am currently 15 days post surgery and on no medications; I called the endos office today and asked they girl if I could be put on the cancelation list and she asked when my appointment was currently and why I was being seen. I told her and she said oh no we have to get you in sooner. My appointment is tomorrow at 10am. I am so shocked due to the run around I received previously. I can't even sleep. My surgeon called and even got nowhere. I guess we just had to get the right person on the phone. 
Hopefully tomorrow I will find out when my RAI will be and the rest of my treatment plan. Thank you for all the help and suggestions. I think it is amazing how GOD works. I felt like he was sitting on my shoulder today when I made my last attempt with this doctors office. Defiantly have been thanking the good Lord several times today.


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## Octavia (Aug 1, 2011)

Excellent work!!!!

Hopefully you'll get that RAI ASAP!


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## Andros (Aug 26, 2009)

bairfrey said:


> Hello everyone, after a whirlwind of a week I got an appointment with my endo. Originally they weren't going to get me in until July 13th and I am currently 15 days post surgery and on no medications; I called the endos office today and asked they girl if I could be put on the cancelation list and she asked when my appointment was currently and why I was being seen. I told her and she said oh no we have to get you in sooner. My appointment is tomorrow at 10am. I am so shocked due to the run around I received previously. I can't even sleep. My surgeon called and even got nowhere. I guess we just had to get the right person on the phone.
> Hopefully tomorrow I will find out when my RAI will be and the rest of my treatment plan. Thank you for all the help and suggestions. I think it is amazing how GOD works. I felt like he was sitting on my shoulder today when I made my last attempt with this doctors office. Defiantly have been thanking the good Lord several times today.


I am thanking the Good Lord as well; thank goodness! Keep us updated!


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## teri2280 (Feb 7, 2012)

bairfrey said:


> hello everyone, after a whirlwind of a week i got an appointment with my endo. Originally they weren't going to get me in until july 13th and i am currently 15 days post surgery and on no medications; i called the endos office today and asked they girl if i could be put on the cancelation list and she asked when my appointment was currently and why i was being seen. I told her and she said oh no we have to get you in sooner. My appointment is tomorrow at 10am. I am so shocked due to the run around i received previously. I can't even sleep. My surgeon called and even got nowhere. I guess we just had to get the right person on the phone.
> Hopefully tomorrow i will find out when my rai will be and the rest of my treatment plan. Thank you for all the help and suggestions. I think it is amazing how god works. I felt like he was sitting on my shoulder today when i made my last attempt with this doctors office. Defiantly have been thanking the good lord several times today.


yay!!!!!!!!!


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