newbie

luckbug

Heya! I'm new here, got my thyroid out last month on the 20th due to papillary cancer and I'm learning all of this as I go along. Kinda feels like everything keeps changing. But I love that I have energy for once and I'm not crazy for feeling like everything was harder than it should be.

A bit about me: I'm 27, from CO, and I work in engineering. I have an awesome dog named Buttercup (named for the Princess Bride of course) and I like running and biking. I'm starting to get into dancing as well. Currently I'm bad at it but it's fun and I'm getting better.

As for thyroid stuff, I'm pretty sure my meds are too high; I keep getting hives and my heart rate seems higher than normal when I exercise. I know I'm still recovering from surgery but I feel like I'm burning out really quickly. Anyone else get like that from Levothyroxine? I know it's hard to tell this soon after surgery and there will need to be some adjustment.

Also, I go to my first endo visit the 10th, any advice?

Nice to be here and meet you all!

bluepotatoes66

Welcome!

I don't know much about the hives and heart rate stuff, so I'm afraid I'm not going to be much help there.

My advice is to do some research beforehand. My personal font of information about thyroid issues is a site called Stop the Thyroid Madness. They have a couple books out as well, if that's your preferred medium. Also, I know some people are socialized to bow to people in authority even when they're wrong - please stand up for yourself with the endo and if you don't think they're a good fit for you, then don't reschedule with them.

Also, I would personally insist on, at the very minimum, Free T3 and Free T4 tests alongside the standard TSH test - especially if you don't have any recent testing that includes all three.

luckbug

Yeah I've been doing more research, and my docs before have been only doing T4 stuff and not looking at T3. So I'll definitely be asking. Hives and heart are increases are side effects that indicate a high level, so I'm expecting my levels to come back as higher than before. Thanks for the site recommendation, a lot of stuff I've been finding is about the treatments but not actually how to live with it long term. Considering I have no thyroid I definitely need to learn how to live with this long term!

Fuzzipeg

I second reading from Stop the Thyroid Madness, this site/books set out to get the most recent thyroid information to us the sufferers, because the service we receive is not necessarily the best. People including some in the medical profession see thyroid issues as simple, just do this and all will be well, increasingly science is discovering more and not everyone keeps up or is able to keep up with developments.

As an aside, it is known levo does not suit all. There are several members of this group who have said they do best on synthrod, another synthetic t4, though different doctors have said there is no difference. You could have problems with fillers or binders or need a hypo allergenic version, if you are on the pills. Any of these could cause hives. One's heart rate can change as a result of medication or other interventions, the possibilities will be personal to you. You also mentioned "burnout" I understand you to mean running out of stamina. If this is so, it could indicate low t3 but nothing is necessarily that simple, you could be doing too much too soon.

If there was one test I would ask for it would be the free t3, the numbers the medics like are between 4 and 8. all too often here this test is refused as a matter of course. The free t3 are the active thyroid hormone which the t4 are supposed to convert into. T3 is needed by each and every cell.

Please read all you can that relates to you, understand as much as you can and how it relates to yourself. If you disagree with something you are told, stand up for yourself so you understand or they do. All the very best.