[Hybrid21]

in reply to: Second go around w/Graves #1185314

Thanks everyone. The more I thought about it last night, the more I panicked so I asked my Endo’s office for a good ophthalmologist that either specializes in Grave’s or knows a lot about it and they referred me to an Ophthalmologist they said is really good. It turns out she’s an Oculoplastic Surgeon. I googled her and she’s published on TED before, so I think she’s a good pick. I called and left a message (she practices in another state twice a month) before my ultrasound & taking the nuclear pills for the uptake and all the stars aligned since her office called back from the other office before I went to the first part of the thyroid scan:) They were very thorough on the phone and asked for a lot of info about my history and my current symptoms, test results, etc. They said since I’m symptomatic, they can see me when they are back here tomorrow afternoon and asked to get my labs over to them. I called the Endo and they were able to accommodate the request so I’ve pleased it has all worked out so well. I have a feeling that’s a very lucky break.

And thanks Kimberly for instructions on getting notifications. That’s really helpful.

ETA: I signed into my medical portal and my TSI result is posted. It’s 386% baseline. It says <140% is the reference. Since I'm symptomatic and I've been diagnosed with it before, I was expecting it to come back positive so it's no surprise. I can't believe there are people that have been feeling like this and fighting this disease for so many years. It's exhausting.

[Hybrid21]

in reply to: Second go around w/Graves #1185311

Sorry for the delay. I didn’t realize there aren’t email alerts for new activity.

I agree about the beta blockers. The first day the beta blockers seemed to relieve all my symptoms (or maybe it was the stress lifting since I finally knew what was going on), but after that, it’s only improved some of my symptoms. My anxiety and emotionalness (I know that’s not a word) are still there and I’m still having issues sleeping about every other night, even though I’m taking a beta blocker before bed. Those are all issues I thought the beta blockers would take care of but I don’t feel nearly as horrible as I did, so that’s a step in the right direction.

I have my ultrasound and start my uptake scan tomorrow, with the second 1/2 of the uptake scan on Wed and she said I can start the methimazole right after I finish the scan.

She asked me to schedule an eye appt because there’s a particular test she wants done so I had that appt today. He measured my eyes and said my left eye is normal at 19 but my right eye is showing Grave’s Opth at 22 (I can only guess that that is how far out of the socket my eyes sit), but he thinks it will resolve on it’s own as long as I’m adequately treating the Grave’s. I didn’t realize it until after my appt, but my eye Dr. is an Optometrist, not an Ophthalmologist and I noticed on my Nurse’s notes, she wanted an appt with a Ophthalmologist. I’m hoping that’s okay. My next appt with her isn’t for a month, unless she needs to change something after seeing my scan & ultrasound, but my eye Dr. is sending my results, so if it’s not the proper test or if she’s not happy, I should hear something.

I have a call into her office due to the beta blockers. My blood pressure has been in the 70’s/50-60’s a few times a day since I started taking the beta blockers to reduce my heart rate. It’s normally 90’s/80’s. I called her office today to let her know to expect my eye report from the eye dr. and also to ask about the blood pressure. I didn’t think to ask about the optometrist vs. ophthalmologist. The person who answered said we can discuss my eyes at my follow-up after she gets all my tests together and I’ve been on the meds for almost a month but she wants to check with the Nurse specifically about the blood pressure because she thinks that might be too low. I hope it’s not. At least not too low that I have to stop taking the beta blockers before the methim. has a chance to start working and lowering my symptoms.

Thanks for everyone’s support here. It’s been really great.

[Hybrid21]

in reply to: Second go around w/Graves #1185309

Thank you for the advice! I went to the regular Dr yesterday and he asked what I was prescribed last time, looked it up in a chart book, prescribed 10mg of Methimazole 3 x’s a day and said all I need to do is get the CT scan w/contrast of the lump above my collarbone and then come back in a month to see how I’m doing. He said I would feel better in no time. I reiterated that my eyes were bothering me and I was worried it was from Graves and he looked at them with a light and said he didn’t see any pink eye so I shouldn’t worry since Graves can create all sorts of symptoms that go away once you’re put on meds and sent me on my way.

At that point, I knew I’d better see an Endo. He’s a nice guy, but he doesn’t seem to know a lot about Graves. I figured at the least I could call an Endo for an appt & ask for advice on the phone about the dosage of Methimazole he prescribed to make sure it was okay to take before Im able to get in with the Endo, but I lucked out. One of the Endo’s had a last minute cancellation. It wasn’t with the Endo, but with her nurse who they said was a longtime Endo nurse and knew just as much as the Dr, so I set it up.

I went in to see her this morning and I’m so glad! She wants more bloodwork to get the antibody count (TSI) since the last blood work didn’t have that. She also said to cancel the CT scan w/contrast since the iodine contrast can really aggravate my Grave’s/Hyperthyroidism. She said it’s not completely necessary to do an uptake scan, but that it could turn out to be useful if I was game for it (I said okay) and she also scheduled an ultrasound. She said maybe it will give give her some info on the lump also, but if not, we can reevaluate what to do about it then. Since I said okay to the uptake scan, I can’t take the Methimazole until afterwards (I had only taken one yesterday before they called to say they could get me in, so don’t take any).

And the best part? She put me on Propranolol! It has already lowered my heart rate from 112 to 68:) Hopefully it will mean I can finally start getting some good sleep and will no longer have anxiety or be an emotional basket case.

This is one tough disease. I am really shocked it’s not more well known. I am so, so, so happy to have the beta blockers while waiting for all the tests next week. And I am absolutely positive I am done smoking for good. I don’t want to risk this getting any worse, and to be honest, I’ve felt bad enough since I quit that it was the last thing on my mind, which was kind of a blessing in disguise.

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