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#1060128

All happened pretty fast. Just a re-cap, MANY years ago I was diagnosed with Hashimoto, started small dose of levothyroxine for that about 2 years ago, then about 1 year ago started having symptoms of Graves’, not diagnosed until Dec on 2012. Stopped levothyroxine & went on tapazole would even out levels T3/T4 for a short period of time & then I would have to increase doses. TSH never seemed to get under control, always very low to almost non-existent.

Kept meaning to post here & ask questions but between paperwork & doctors & how I was feeling with my Graves’, I felt just too overwhelmed. Spend a good while with my (new) endocrinologist going back/forth between RAI & a TT. TT it was decided.

The hospital stay was a nightmare (eventually I’ll get to that in my blog). My ENT was amazing. He did a TT on a friend of mine about a year ago. She looks/feels great though she said it took her a good month to start feeling normal again.

I just started 100mcg of levothyroxine yesterday, been on 10K mg of calcium (2500mg 4x a day) since surgery. I was also put on 60mg of prednisone before the surgery due to slight complications with TED in my left eye, which I go down to 40mg on Wed & I’ll be tapering off that awful stuff up into the start of October. Also on lotemax which I tapered down to 1x a day after the surgery for my TED.

My ENT said I could already go back to my endocrinologist but it could be 6-8 weeks before I really start feeling the effects of anything positive. Already out of work since start of July, no paycheck, all sorts of bills coming in & think I only have 2 months of short term disability left from all of last year because of a leave I took when they were in the process of diagnosing me with Graves’, but I haven’t received anything back from the insurance on that. That’s been the most “stress” I’ve been feeling, having to deal with paperwork, bills & money.

As far as how I’m feeling & side effects I’m having, the worst that’s going on so far is cold, clammy sweats. My head/hair feels slightly numb, fingers stiff. If anything, the tops of my forearms/hands have been extremely sensitive to the cold & slight numbness. Still extremely blurry & tearing left eye at times (this comes & goes thought not getting better or worse as far as I can tell). Though I can say that I feel incredibly more calm than before the surgery. My hair is slightly falling out & my skin/hair have also dried out immensely, nails a bit more brittle. Was having a bit of problems with phlegm because of the breathing tube up until, maybe Thursday, coughing more the more that I talked, but it doesn’t seem too bad now. Then again, I haven’t really been talking. Feel like I’ve kind of been “spacing out” a lot since the surgery also.

I’m going to call my endocrinologist & ophthalmologist on Monday for questions & new appointments. Have an appointment with my therapist next Friday, Primary in 2 weeks.

I actually completely stopped taking pain medication a few days after they surgery. I still have trouble now & then with my neck & pain lying down or looking to the side. Showers easier than bathing. Sleeping a bit of a problem because I like to flip around. Still not driving due to the neck movement (though doc said I should prob be ok) & also TED symptoms seems to get worse the more I move around, probably because I’m being more alert & using my eye more…?

So, just an update. Seems like a lot of people are having the TT done lately. Trying to be really optimistic about everything. Feeling better, healing, getting back to work. I really wish everyone the best who are going through this!

Amanda

[SueAndHerZoo]

#1180622

Welcome to the TT Club. I had mine out July 16th and feel OK. Definitely felt a lot calmer after surgery than before, even though I have had a few days of high anxiety but luckily they are short-lived. I was hoping I’d be a little more energetic at this point but part of that could be that I’m just lying around a lot and not trying to do much. Sometimes the less you do, the less you want to do, so tomorrow I may push myself to get up and out for a while.

I felt GREAT for the first 10 days post-op and then the fluctuations started so be prepared for anything…. this is quite an adjustment our bodies are going through. I told my office I’m taking one more full week off and then will go back for half days starting August 12th … time will tell how that plan works.

Good luck, and keep us posted.
Sue

[Gabe]

#1180623

Hi Amanda,,, welcome…glad you took time to put all this down and join us. This forum has been very helpful to many of us, whether we choose TT (like me) or RAI, or meds. This is a very chronic, complex disease that for many folks is a breeze and for others (usually those of us who post!), we’re in the small percentage of people who don’t regulate well, get TED, struggle with flutuations, and are generally snake-bit!

Just a heads up that it may take you more than 6-8 weeks to feel different, normal, well. It depends how quickly your ideal dosage is found, how strong your antibodies were/are, and probably dozens of other factors that are unique to each of us.

I also have TED that got worse after my TT, probably because my antibodies were raging and the TT/timing were just a coincidence. The TED is THE most disturbing thing about Graves’. The double vision, swelling, tearing are frustrating and impact so much of general daytoday life.

I hope you breeeze thru this, find your magic dose quickly, and that your TED resolves without getting worse…

Welcome! Karen

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#1180624

Thanks. It has all really been a learning experience, though some things I think I end up knowing, then get all confused again about.

My very 1st endocrinologist was a numbers don’t lie kind of doctor and this forum & other groups have really taught me how different everyone is & even though my numbers may seem “standard” that does not mean I am ok.

My new doctor is much better. I saw him 2 days ago & he checked me out. We did different post op blood work & yesterday he thinks I should be able to go off the atenelol, I can lower my calcium from 10K to 5k, be he did up my levothyroxine from 100 to 125mcg though he said what was tested was in a normal range. It was over the phone so I didn’t get the numbers. I’ll ask for them next time I’m in. Time to wait now!

The symptoms all really started within 2 days post-op. (The Graves’ was what ended up being the TT factor for me.) I was confused & concerned because I really couldn’t decipher if the new problems I was having had to do with calcium deficiencies or the hypothyroid, because I never experienced the hypothyroid/Hashimoto so severe before. Then, after surgery, I had my ENT saying one thing and my primary office calling for another, then my health insurance calling & saying other things. I was all like, let me just call my endocrinologist & leave it in his hands right now.

We discussed a T3 replacement & non-synthetic T4. Of course, synthetic does work for some people & he is open to to the non-synthetic but, being within 2 weeks post-op, I just have to be patient and wait. AND pay attention to my body & symptoms. I’ll see him again in another month.

My doctor thinks the prednisone my ophthalmologist put me on for the TED in my left eye could be contributing though, & even hinder my healing a bit. The TED is the thing I am MOST impatient about! Since my right eye has not been affected by the TED, just my left, there are times where I feel like going and getting a patch for it! LOL Just cover it up and pretend it’s not there. Ugh!

I definitely have been trying to get up & move around a lot more lately. The joint and bone pain/aches has been hindering my mobility a bit though. Though I’m tired & feel kind of crappy I do feel like I have more energy but I also am getting depressed. Working through it. It’s been hard to explain because it has been so different, like shock.

Thanks again everyone for their words! I can’t even go on to how much of a struggle things have been to get me to this point & this group has really helped me get a more positive look at things to come! (& I have to keep telling me to stop being so impatient!)

XO Amanda

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