[obnursenh]

#1060716

Hello all!

Thought I would share an update, particularly for those considering or facing TT.

I was dx with Graves 2 years ago last month. As a nurse, I opted for the least-invasive treatment option, and started on methimazole. My disease responded well initially, and over the first year I got down to a lowest dose of 5mg/day. Then, about a year ago, my practitioner called after a round of labs to check on me. I was way out of whack again. Started over on the dosing. I was never able to get below 12.5mg/day; after that I either felt symptomatic or my labs showed worsening. I was tired of the rollercoaster and decided I was ready to get off. I had an ultrasound at the very end of December and an appointment to discuss changing treatment modalities; the doc agreed that the meds were clearly not working for me. Having developed TED about a year ago RAI was not an option, so surgery it was!

I had my TT last Tuesday, so I am exactly a week out. In fact, at this time last week I was just getting ready to move from PACU to my room on the floor.

I had my TT at Mass General. I got incredible care and felt safe and attended to at all times. I was VERY nervous over the thought of having nausea and vomiting post-anesthesia as I am very sensitive to medications, and who wants to throw up with an incision in their neck??! I conveyed my concerns to the anesthesiologist in the pre-op area and she took very good care of me. Never had even a twinge of nausea. I was impressed.

Timeline:
0530 reported for surgery
0630 called to preop
0715 rolled to OR area
0725 signed anesthesia consent
shortly thereafter rolled into OR. I had an all-girl team, I realized later – GIRL POWER
1000 – husband got an update in waiting area; I presume I rolled to PACU but I don’t remember
1100 – had first ice chips and sips of water
1200 – to my room on the floor

That first afternoon I spent mostly dozing off and on. My husband and mom were there and we talked some but my throat was sore and my voice was weak. I enjoyed some clear liquids in the early afternoon and by late afternoon was ready for a chocolate shake – that felt sooooo soothing on my throat! I had soft foods for dinner (mashed potatoes, mashed carrots, and soup), and some tapioca pudding later in the night for a snack. My nurse offered some graham crackers during the overnight hours and I tried them but they were too tough so I passed after that. In the morning my whole team of docs and such visited me and I got the all clear to go home. I had breakfast, dressed, and we were on the road around 10a.m.

Pain-wise:
Everyone is different, but for me the pain was only bad once, as I woke up coming out of the OR, when I was a 6/10 on the pain scale. After that it hovered between 2 and 4 and was quelled nicely with some toradol and tylenol and icy liquids. I went home with a prescription for oxycodone, but only took a half pill a few times to keep me comfortable for sleep. I haven’t needed much medication. I have kept up on the motrin to keep discomfort at bay and to help with swelling. Ice packs to the incision area have been useful for comfort.

Calcium:
My parathyroids remained intact post-op, and my calcium level was okay on morning of discharge. I was sent home with orders to take 1000mg calcium 3x daily for the first week. I opted for fruity tums which haven’t been too bad. Now I can begin to wean down. I did wake once with tingly hands and feet which worried me, but I doubled down on the tums as ordered and it went away; no issues since.

Food:
As stated above, I started with liquids and progressed to softer foods. I am mostly enjoying a regular diet now, though some things are still a little uncomfortable to swallow.

Activity:
Taking it slow and easy. Resting lots and taking at least one nap every day (sometimes too). Sleeping overnight was tough until about night 5. The past two nights have been (no pun intended) a dream! It was mainly related to position – I am a side/stomach sleeper and obviously that didnt’ feel too good. But I’m getting there!

Voice:
My voice is off and on. I would say that it’s still hoarse and a bit wispy much of the time, and I have a hard time putting that “question mark” sound on the ends of questions and other parts of speech where your voice goes up. My surgeon said my vocal nerve did very well through the surgery so I suspect this is probably related to some residual swelling and it should improve over time. I’m not doing a lot of talking, no singing, and certainly no yelling (my kids are loving that!).

Symptoms:
I know it has only been a week but overall I feel good. One totally objective measure came from a review of my fitbit heart rate tracker. My husband had given me the fitbit as a gift because my heart rate was always all over the place. Before getting sick my resting HR was in the upper 50s; since getting sick I had hovered most of the time in the mid70s during sleep (per fitbit) and as I was up and about through my day was anywhere from the upper 80s to low 100s. It was uncomfortable to say the least. Well I reviewed my HR tracker and it is unmistakable that there has been an improvement. You can see visually on the graphic the day before surgery and the days after. I am happy to report that my resting HR during sleep is now in the low 60s, and I run in the mid to upper 60s when up and around. Higher than my pre-illness baseline, but I’m also very deconditioned since exercise was uncomfortable with a HR that high! I am looking forward to getting back to the gym once this recovery is done.

All told I personally wish I had opted for this from the start. I’m thinking I could have saved myself 2 years of frustration and symptoms. I know that dealing with hypo is not going to be a picnic either, but I am hopeful that it will be overall easier and less uncomfortable than being hyper

If you have any questions I am most happy to answer!

[Kimberly]

#1184303

Thanks so much for this detailed post – this will be a huge help to those who are considering surgery as a treatment option.

Wishing you all the best as you continue on the road to recovery!

[Liz1967]

#1184304

Congratulations! Levothyroxine isn’t hard to dose. You may be on the low or high sides of normal until you get your dose perfect, but that is so much easier with a measurable TSH. I felt like you did about getting it done sooner and I had it done about 8 months after Graves diagnosis! Even that short a period on methimazole was too long. Glad you are doing well.

[scanders]

#1184305

Thank you for sharing! For those of us still “on the fence” it’s nice to hear how it went, and how the next leg of your journey goes with dialing in replacement hormone.

[Author]

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