# Met with surgeon yesterday



## VFRgrl (Feb 15, 2015)

She is recommending complete removal- TT. The nodule on the left side is larger and starting to grow down toward my collarbone. There is also a nodule "of concern" on the RIGHT side. She said it probably should come out- sooner vs. later not because of cancer but because the surgery becomes more difficult the larger the nodule gets. Its easier to control for no thyroid vs some, part, or this toxic one.

She thinks I have Graves- even though my antibodies are low normal range; and I DO NOT have a diffuse toxic goiter.

She could not speak to my post surgery concerns specifically how my medication would be handled because she doesn't do that- she wants me to work with an endocrinologist. She has worked with my current endo in the past and seemed to have respect for him (I do not like him at all). She said most people have a hard time with their endo's since they have to be so brief, etc.

I'm not sure what to do at this point about the endocrinologist.

My surgery is tentatively scheduled for June 10th- but she DOES say she won't do surgery unless my fT3 and fT4 are normal or close to it. She thinks it can be normal by then. She took blood for labs yesterday- I'll post updated results when I get them

I have a HUGE event in the beginning of October that is really important to me. I'm not sure if I should wait-postpone- until after that- or just get it done and get on with the nightmare that will ensue with getting medicated properly.

I am scared, confused, and miserable.

Lori


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## joplin1975 (Jul 21, 2011)

I think you should be fine by October. I'm not saying you are guaranteed to be perfect, but I found there was a difference between not being perfectly medicated and being flat out sick. At a TSH of 121 and free t4 and free t3 being undetectable, I was still able to take business trips, trips home to plan my best friend's wedding, and go to work normally. I was tired, but it was ok. By January, I had a TSH of 8 and I was still tired, but feeling well enough to vacation in Mexico, during which I had a lot of fun with family and friends.

The good thing is that you have our support and you will be able to advocate for yourself. Do you have a good primary care physician who might also be able to help with post-op medication?


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## VFRgrl (Feb 15, 2015)

My primary care doctor is good; but he isn't comfortable with medicating me until I'm 'stable'. I'm o.k. with advocating for myself- but my endocrinologist has just generally pissed me off. I have another apt with him on April 14th where I may try to salvage the relationship. The only reason is its been difficult finding another endo in my insurance plan- and quite honestly I'm just exhausted dealing with trying to get in as a new patient in some of these places.

My plan at this moment is to go to the current endo with a clear plan of what I want/need written down. I'm also LOSING weight on the methimazole. I am o.k. with that since I'm working out 1 hour a day and eating a lower calorie diet and SHOULD be losing weight. but I haven't changed anything from when I was crazy hyper on 2/25 and my weight would not budge. If the scale yesterday was accurate- I've lost 8# since then. So of course my concern is that my endo has no clue how to deal with MY numbers because he was flat out WRONG about my weight gain being because of what I eat. I'm eating the same, exercising the same- and losing weight- and I KNOW I'm less hyper because my resting HR is 52 to 60; I have NO palpitations; NO more muscle weakness, and my exercise tolerance is almost back to normal.


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## Lovlkn (Dec 20, 2009)

> Started on Methimazole 10mg 3X a day


OMGosh - have you been on this dose since 2/25/15?

I would think you would be well within range by now. Would your surgeon consider moving your surgery up as I imagine they are going to make you hypo like they make everyone hypo on Methimazole


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## VFRgrl (Feb 15, 2015)

Yep; been on that dose since 2/25 and feel like sh&t. I'm definitely not feeling hyper now. In fact I was falling asleep in a meeting this morning.. They took blood yesterday so we'll see where I am. Surgery can't be moved up since surgeon is booked. Endo seems to think it will be months to bring my levels down (they weren't that high IMHO but what do I know I'm not an endocrinologist?).


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## Lovlkn (Dec 20, 2009)

VFRgrl said:


> Yep; been on that dose since 2/25 and feel like sh&t. I'm definitely not feeling hyper now. In fact I was falling asleep in a meeting this morning.. They took blood yesterday so we'll see where I am. Surgery can't be moved up since surgeon is booked. Endo seems to think it will be months to bring my levels down (they weren't that high IMHO but what do I know I'm not an endocrinologist?).


I agree with you - you were just out of range and since more of us here are trying to get to 3/4 of range - you likely are already toward bottom range.

30mg is a fairly large dose. When I started Tapazole I was taking 20 then increased to 40 and I was hypo before I knew what happened.

When thyroid hormones move fast - as I am sure your are, you will not feel well.


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## webster2 (May 19, 2011)

I think your plan to work with your current endo is a well thought out one. Being prepared before hand with questions and an idea of the direction you want your treatment plan is very good.

Endos have a reputation for being only interested in the lab results not the person that the results are connected to. I got up and walked out on my second one. It makes me laugh to think about it now but she wouldn't listen to me. She opened the appointment by not saying "hello" but "you know you had cancer, right?". I kept telling her I was cold and tired all of the time and having a hard time in general. She said your labs are in range, you're fine. I said thanks, got up and left. She chased me down the hall saying you can't do this, you can't get up and leave. I can refer you to someone else in the practice. I just walked out and had a bit of a meltdown in my car. Everything eventually worked out and I have an endo that is wonderful. He is in the same practice. 

I also think by October you should be okay, maybe not perfect, but well enough for your event. I can understand how you are feeling right now. There is a lot of support here for you.


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