# First trip to Endo. What to ask?



## Butterflyjkg (Nov 29, 2011)

Friday is my first trip to my Endocrinologist. What should I ask? I don't know anything about any of this really. I am 8 weeks post surgery as of today.. what do I want to ask her? I don't want to act stupid in there and kick myself when I get out... what should I know...???


----------



## Andros (Aug 26, 2009)

Butterflyjkg said:


> Friday is my first trip to my Endocrinologist. What should I ask? I don't know anything about any of this really. I am 8 weeks post surgery as of today.. what do I want to ask her? I don't want to act stupid in there and kick myself when I get out... what should I know...???


Ask her to run your TSH, FREE T3 and FREE T4 so you can have a "baseline" with which to work during the titration process.

How are you feeling? Are you on thyroxine replacement yet?


----------



## sonnyjane (Oct 6, 2011)

Glad you posted this! I am 4 weeks post-surgery and have my first appointment on Thursday.

I will have a lot of questions about RAI, as I was told I will need be needing that shortly.


----------



## Butterflyjkg (Nov 29, 2011)

I do take Levothyroxine? .10 mg. I feel okay, I guess. My hair is all over the place but other than that, I guess I feel okay. I feel pretty much like I did before this nightmare began.

I didn't have to drink that RAI, I was told I didn't need it, but I guess the Endo doc will tell me if that was correct. I have no reason to doubt my surgeon's decision on that ,but then again he's not an Endo.

Let's hope I get good news from her as well. I was told that I was GREAT! FINE! I will be clear for the rest of my life! I don't know if they can say that with 100% accuracy.. DOUBT IT, but for now I am going to try to not think about it. It takes me to a very dark place that I don't want to go back to.


----------



## joplin1975 (Jul 21, 2011)

Talk to him or her about how you are feeling on Levo and make sure you are clear on a ongoing schedule about blood work. I would imagine adjustments will eventually need to be made (it seems a lot of people seem to feel better on 125 or 150 mcgs ong term).

I would also ask, since you did have cancer, if any whole body scans will be scheduled (usually a year out) or if you are in the clear for those, since your's was well-encapsulated.


----------



## nodakmom (Oct 15, 2011)

I have my first endo appt next week. I have no idea what to expect either since my journey has been a little off from what I see everyone else who's gone through RAI has been through (no WBS after RAI). They ran a TG tumor marker test right before my RAI, which came back at 12. The surgeon's NP told me that the first number itself doesn't mean much, it's whether the number goes up at any point after. Everything I've read says TG should be 0 when you have no thyroid. Anyway... looking at my appointment reminder sheet it says 9:30 nurse visit and then 10 "Long Appt" with the endo herself. Just how long? LOL


----------



## Butterflyjkg (Nov 29, 2011)

Okay.. so I went to the Endo. Until she actually came into my exam room I was seriously ticked off. I could hear her chatting with the lady in the next room about her Christmas plans, and the patients alcoholic brother in law who is SUCH a pain in the butt, etc. I had a splitting headache and I was ready to just flip OUT. A half hour later, the doctor came in my room and apoligized for being so late... because she had a patient who likes to talk.

SO, long story short, she asked my history and looked at my lab work, surgery reports etc. She said that my cancer, papillary , was the most common kind. VERY SURVIVABLE. I then told her about my mom and her NOT surviving and she gave me the same shocked look that they all give me. :scared0015: She said that is HIGHLY unlikely and I said it's true and she said she did NOT have what I had and she would be VERY interested in seeing my mother's medical records. Basically I told her I feel okay, except for my hair falling out... bad. She said that is not from my thyroid, or lack of one, ???? , that is a Vitamin thing.

I was thinking OKAY???!!! Having NO Thyroid is NOT why my hair is about 1/3 gone and in everyone's food and everywhere in my house? She said that is a Vitamin D thing.. and is my calcium supplement mixed with Vit D and I said NO. DUH, I take a separate liquid D supplement that I forgot. She was very nonchalant about it.

She said I do NOT need any RAI.. OR any yearly body scans of any kind. She said that mine was so tiny that I am in the clear and very lucky. She did mention taking some labs in about 3 month and having an ultra sound to make sure it's not growing back. HA! Oh great! Just what I need??!! She did say that if it does, it won't be cancerous! I figured that much. I'll probablly sprout one on my breast. We were joking in here that I would be the first one to grow a Thyro-boob. HA. What else did she say? Oh, she said my cancerous nodule was .8 cm. She said now your cancer was not .8 cm in size, but the nodule ITSELF was.. so your cancer was a tiny part withIN that nodule.. so VERY tiny. I asked if it was hereditary. She said NO. My 14 yr. old daughter was in the room with me. She said your mom getting cancer of the thyroid was against the odds... it's not that common... and YOU getting it , too, the odds of that are astronomical. VERY RARE. She did say that there is one kind that is genetic and this is NOT that kind. She said that would effect everyone in the family , no one would be spared. Again, she said she would like to see my mom's old medical charts. I was told again that I was VERY LUCKY and I would die from something else. She even said that if I never knew it was in there that I would probablly die from something else, it's THAT slow moving.

Okay.. so.. I felt better when I left... I left a trail of hair as I went out the office. SO, what about this hair loss???!! Surely lots of other people have this, or is it me? I was sure it was from my thyroid, what do you think?? Does this doctor sound okay or what? She said my levels are low and that is where they want them to stay , I guess so I don't grow my Thyro-boob. :tongue0015: 
Oh, and Happy New Year everyone. Let's hope we are all okay in 2012.


----------



## Butterflyjkg (Nov 29, 2011)

One more thing... my doctor changed me from generic Levothyroxine? to Levoxyl? She said she does NOT want me on generics. I asked if I could just change over like that? She said SURE!! Why does it say on the medicine bottles "DO NOT CHANGE BRANDS" ? Again, very nonchalant about it.


----------



## Andros (Aug 26, 2009)

Butterflyjkg said:


> Okay.. so I went to the Endo. Until she actually came into my exam room I was seriously ticked off. I could hear her chatting with the lady in the next room about her Christmas plans, and the patients alcoholic brother in law who is SUCH a pain in the butt, etc. I had a splitting headache and I was ready to just flip OUT. A half hour later, the doctor came in my room and apoligized for being so late... because she had a patient who likes to talk.
> 
> SO, long story short, she asked my history and looked at my lab work, surgery reports etc. She said that my cancer, papillary , was the most common kind. VERY SURVIVABLE. I then told her about my mom and her NOT surviving and she gave me the same shocked look that they all give me. :scared0015: She said that is HIGHLY unlikely and I said it's true and she said she did NOT have what I had and she would be VERY interested in seeing my mother's medical records. Basically I told her I feel okay, except for my hair falling out... bad. She said that is not from my thyroid, or lack of one, ???? , that is a Vitamin thing.
> 
> ...


Actually, it would be wise to be very astute about getting your mammograms. There are many abstract to support this sort of concern which you can Google.

It will be important also to keep your TSH suppressed. And regular ultra-sounds and check-ups are high on the list as well.

This is about you, not her. Sorry to be so abrupt about it but I am laying it out there. Take care of yourself and listen to your instincts.

You know what you know;especially when it comes to your mom. Don't let anybody talk you out of it.


----------



## sonnyjane (Oct 6, 2011)

Butterflyjkg said:


> SO, what about this hair loss???!! Surely lots of other people have this, or is it me? I was sure it was from my thyroid, what do you think??


It's not just you. I had my surgery 6 weeks ago (TT) and I lose hair in clumps right now. Worse than it just falling out completely is that it's breaking...I look like I got a bad haircut from a drunkard. Some is short, some is long, and some is sticking straight up from the top of my head because it can't make up it's mind where it should go. Luckily I've always had ridiculously thick hair, so I have "hair to spare", but it's really alarming how much I'm losing. It has to be hundreds a day. My pillow is covered in the morning, my sink is a disaster, and I'm finding them all over work (embarrassing!). I'm not on a "real" dose of thyroid medication yet because I'm trying to schedule my RAI treatment and will have to go off medication for that, so I'm still just on a generic dose until all RAI is done and they can start me on Synthroid. I'm hoping once that is figured out, I'll get back to normal.


----------



## joplin1975 (Jul 21, 2011)

Hair loss can also happen when you start hormone replacement. Each time I change a dose, I notice an increase in hair loss. It evens out eventually.


----------

