Disappointing Appointment - Vent

[Batty1]

My Endo appointment was a disappointment as always and honestly dread even going to see him and don’t want to change again.

He began by saying “great news” the recurrent thyroid cancer is stable “We will do another US this time next year” in the meantime do bloodwork in the next couple of weeks so I can check the numbers and this isn’t even the worst of it he went further to ask are you having any issues “yes”every time I take my thyroid medication within 30 mins I fall asleep …. His response do you have sleep apnea “why” sleep apnea will make you feel sleepy constantly and I know this because my husband suffers with sleep apnea and I don’t fall asleep any other time only after I take my meds …. Crickets and no solutions…. So Im going to start adding back slightly more thyroid meds like I did earlier this year which didn’t leave me sleeping and stopped my racing pulse when I move… I did not even mention racing pulse to him, why bother.

I’m just annoyed and regret every day the choice I made to remove my thyroid honestly I should have just left it considering the recurrent thyroid cancer doesn’t seem problematic…. You can’t make this up.

I don’t have current labs since Im plagued with migraines that ruined that appointment last week.

[Poniesrfun]

some of us on the US thyroid cancer boards have pretty much given up on endos and work with our PCP for tests and meds. Most nurse practitioner who do primary care tend to be pretty good at thyroid stuff.

Which thyroid meds make you sleepy? You can take your Levo at night then split your T3 throughout the day. Or it could be your not taking a high enoug dose. Looking at an earlier post, it looks like you could have left your T4 alone and increased T3 to where you stop having symptoms.

Patti in AZ

[Batty1 in reply to Poniesrfun]

I tried to get my PCM to do my thyroid stuff and she won’t touch it … its a frustrating situation… I don’t believe I do take enough thyroid meds but these jerks just can’t get out of the way. Once my labs are done Im going to start adding more meds in like I did earlier this year.

Where is the thyroid cancer board?

[Poniesrfun in reply to Batty1]

ThyCa.org has listings of all the support groups they sponsor at thyca.org/sg/. There are "local" groups, online Zoom calls, an email group, Facebook and more. Anyone is welcome at any of the "virtual" groups - just contact the coordinator listed for a Zoom link. (We've had folks from the UK, Europe and others stay up late or get up early to join in on a group discussion.)

Patti in AZ

[Batty1 in reply to Poniesrfun]

Thank you didn’t realize they have support groups, are they active?

[Poniesrfun in reply to Batty1]

Very active!

[Hidden]

So glad you’ve written this. I grieve for my lost thyroid. The cancer was discovered ‘ incidentally’ when I was being treated for another cancer. I wish they’d never found it. I then had to endure the RAI and the long term effects of that which they never tell you about of course

[Batty1 in reply to Hidden]

No they don’t tell us anything other then your going to be fine … sure!

[Hidden in reply to Batty1]

🤐Yes. “It’s the ‘good cancer’” 🤐

[Batty1 in reply to Hidden]

I love that comment “good cancer” so good in fact that it destroys your soul and leaves a wake of destruction in its path “ yup, good cancer”.