[amosmcd]

#1178819

I did go back to work yesterday. I have the next 3 days off, so it was easy to just do the one day. My energy level was fine. Hardest thing was keeping my slippery scarf in place to hide my incision. It looks fine, but it’s pretty swollen, so it looks weird, especially when viewed from the side. It’s early days, so nothing time won’t cure. I deal with the public, so don’t want people staring at it. My voice was a little hoarse off and on, but it was the most talking I have done since surgery. I had sung in the car to the radio without thinking the day before, and I think it was too soon to try that. I don’t have a good voice, but like to sing.

I saw my endo on Tues and my surgeon Weds. Both were very pleased with how things went for me, the surgeon was very pleased with the incision and said I will have very little scar, as long as I keep it out of the sun. Next spring and summer I can get my neck tanned or even sunburned, but not this year.

The pathology report on my thyroid was normal, aside from inflammation from Graves’.

Here are my labs:

Pre-op on 4/12: TSH: 1.36 (0.34-5.60)
FT3: 3.3 (2.2-4.3)
FT4 0.63 (0.57-1.25)
I felt pretty good at those levels.

Post-op on 5/7: TSH: 0.75
FT3: 3.8
FT4: 0.90

These were drawn the same day I saw the endo, so I just got a phone call saying they were normal and to see her in 6 weeks for another lab check. This time I’ll get them ahead of the visit. I’m on 100mcg of Levothyroxine. I have to look at the labs in a whole different way, since they are not based on being on an ATD anymore. So have to wait for a pattern to emerge.

My heart rate goes up and down, so far no higher than 88, my heart will pound when it’s up high. I feel a little shaky inside and a bit anxious. I told the endo about my heart rate, but she’s not concerned. My brain is shot to heck right now. She said that’s normal, and I’ll start feeling better over the next few months.

Starting Monday, I’m to massage the incision a few times a day and use Mederma scar cream or gel to help minimize the scar. I don’t need to go back and see the surgeon until I have any problems with the incision or scar.

All in all, I’m glad I did the TT, the recovery time was minimal for me. Just have to wait for my body to adjust to not having a thyroid and recover from the long-term effects of my thyroid levels going up and down all the time. Hopefully, I will only need one adjustment (if I keep feeling a little hyper) to my meds and that’ll be it.

I saw in another thread about whether TT cures Graves’. I know my Graves’ is not cured, as long as my antibodies are high. A TT will not affect the antibodies, but will get rid of the hyperthyroid danger. Not going to worry about whether other auto-immune disorders will pop up in the future. I’ll get my TSI checked again maybe in 6 months, but it’s an expensive test. I have to pay $75 out of pocket after insurance every time I get it, which I’d rather not do often.

Well, I’m off to get a haircut, and then take one of my cats to the vet for her shots. I’ll check in with an update once a week or so.

Happy Mother’s Day to all the Mom’s out there!

Amy

[Kimberly]

#1178820

Thanks for the update, Amy! Great news that both your surgeon and your endo are pleased. And I like the idea of setting up your work schedule so that you had a day to start getting back in to your routine, followed by a couple of days off!

Yes, it definitely takes a bit of a mindset switch making the transition from anti-thyroid drugs to replacement hormone. Although patients can respond quickly to ATDs, T4 has a fairly long half-life (7-8 days), so it can take a few weeks to gauge the full effect of a dosage change. “Patience” is the watchword!

Take care – and please do continue to keep us posted!

[Gabe]

#1178821

Hi Amy, thanks for the update. Hadn’t thought about the switch in mindset with labs on ATDs and labs post TT. I’ll have to keep that in mind. Great idea to slowly transition back to work…I have that same option so I’ll work that into my plan also. So looking forward to joining the post-TT crowd! Your thread has been a big help. Looking forward to future posts…
Karen

[amosmcd]

#1178822

Thanks, Kimberly!

It’s good to know about the half-life of T4. I never really thought about it before. I was on Levothyroxine before when I was hypo and just kind of went with the flow with my endo, not asking questions. Most likely because I felt so great after starting it. What’s to question?

Amy

[amosmcd]

#1178823

Hi, Gabe–

It worked out nicely to have the break after going back for one day. I didn’t really plan it that way, but glad it did! lol

I wish everyone’s TT experience was as good as mine. Of course, I’m still in the healing phase, so it’s not over yet, but going well. Hope yours does too, if that’s what you decide.

Did notice that wearing a scarf over the incision has made it tender from the scarf rubbing against it when I turn my head. At home I don’t wear anything, just when I’m outside or at work. It’s gotten pretty sensitive, so might have to come up with something else to cover it–some sort of non-adhesive dressing. At least no adhesive that sticks to the incision part.

I’ll stop by a drugstore today and see what they’ve got.

Amy

[amosmcd]

#1178824

Okay, I’m back after a bit of a hiatus due to feeling crappy for the past week.

Here’s what’s been going on:

I felt great after surgery until around the middle of last week, when I started feeling really tired, depressed, anxious and my heart rate would go from fine to above 100 and palpitations with me just getting up and walking to the bathroom. I wasn’t sleeping well. I would get dizzy standing up, my blood pressure was low normal, and my forearms started getting shaky (I’ve never had hand shakes, just my forearms.) I was an emotional wreck. I thought last week would never end, so I could just collapse and rest on the weekend. I felt horrible all weekend, and called in sick on Monday because I was so exhausted. (I’m on 100mcg of levothyroxine.) I also have been eating more, but haven’t gained an ounce, and I haven’t been on a walk for a week.

I called my endo’s office Monday (she had left early–a half day) and told them that I felt horrible. They called me back Tuesday and said the endo wanted me to come in and they had an appt yesterday–yay!! So I went in, and she said things definitely sounded wrong since I had been doing so well, and I got my labs checked.

This morning they called with the results and I am now slightly hyper:

TSH 0.13 (0.34-5.60)
FT3 3.1 (2.2-4.3)
FT4 1.05 (0.57-1.25)

The labs don’t look too bad, but my TSH has been trending down and my FT4 is trending up. Based on how good I felt before surgery, I feel better when my FT4 is low normal and my TSH is slightly above 1.0. I know dosage is not based on TSH, but with me it does seem to correlate with how I feel. Anyhow, she’s dropped my levothyroxine to 75mcg. She wanted to see me in 4-6 weeks, but she’ll be out of the office on week 4 and I’m on vacation week 5 and 6, so I’m going in 3-1/2 weeks from now with my labs drawn at the 3 week mark.

My endo was surprised at how rapidly I went from feeling good to bad, but that seems to be the way my body works. I’m going to skip taking the levothyroxine today, since I can’t pick it up until the middle of the afternoon and I usually take it in the morning when I get up.

So my recovery from the TT has taken a little nosedive, but I’m not surprised that I would need a dosage tweak. I feel better psychologically just knowing I was not in fact going crazy.

Another little issue has been my voice. Although it was fine after surgery, once I went back to work and had to talk all the time, it’s gotten a bit raspy and tends to break when I hit high or low pitches while talking, especially by the end of the day. I called the surgeon’s office and they said to give it a few weeks, and if it’s still doing it to come in. It’s more of an annoyance than anything else.

I’d been using Mederma scar gel since last Monday to help reduce the scar, but had an allergic reaction to it (redness and itching) so had to stop. I’m going to switch to Vitamin E oil. The incision itself looks good. The swelling has really gone down. There’s still a hard ridge under the incision, but that has also gone down, and should be gone in the next couple months.

I’m still glad I had the TT, and I guess the lesson learned (which I wish the endo’s office had mentioned) is that no matter how good you feel right after surgery, be prepared that you may not stay feeling good while your body adjusts to life without a thyroid. I’m confident things will eventually level out.

I’ll post again in another week and give you all an update. Hopefully I’ll be feeling a lot better by then.

Amy

[SueAndHerZoo]

#1178825

Sorry about the setback but glad it seems to be easily “fixable”. I’m following this thread with interest since I hope to be having a TT in the future so thank you for doing this.

What scares me is when I hear of post TT patients having high anxiety. The major symptom that is driving me towards surgery is the hope that this anxiety will come down…. not go up! I’m guessing it’s temporary, but everyone’s body is different so who knows what results I will have. I can only hope the anxiety will be less, not more. Doesn’t make any medical or scientific sense that I would be more anxious without a thyroid, right?

Good luck, and thanks again for journaling.
Sue

[amosmcd]

#1178826

Hi, Sue–

I just posted on your surgery thread! Definitely my anxiety the past week was due to being hyper. I tend to be slightly anxious normally anyway, not something that usually interferes with my life, but being hyper sets me off. I hate feeling that way, too!!

Definitely there is an adjustment period. Obviously for me, feeling good immediately post-op was not a guarantee I would continue to feel good. I got blind-sided by it, but I tend to have rapid changes with thyroid levels. That’s the whole reason for getting my thyroid out, because neither of the ATD’s kept my levels stable for long. Without a thyroid to be contributing to the whole mess, the levothyroxine should stabilze my levels, but it’ll take time. Hopefully, the rapid swing I just went through is the only one I’ll have, but I’ve always been a bit medically Abby-normal so knows?

Just be prepared for anything, knowing that eventually things will level out. I know reading about people who are fine now makes me realize it will all work out.

Amy

[Boomer]

#1178827

“Abby-normal”… is that a Young Frankenstien reference? If it is ooooh the irony: Marty Feldman suffered from Grave’s…

One of my big concerns, should I opt for surgery vs. RAI, is the pain issue. I’m a recovering addict and pain meds probably aren’t the best thing for a fool like me.

I’ve been clean for 23 years but I’d hate to get a taste of honey-dipped opiate goodness and be off and running. While I feel I’m mentally strong enough after so long it is still a concern of mine.

Do you feel that, should every go right, the pain level after surgery would be tolerable using over the counter meds?

Of course eveyone handles pain differently so I’m not asking for a definite here- just wondering if you *had* to go without pain meds how would you rate the pain level? 1 being no pain and 10 being the worst pain ever?

~~~~~~~~~~~~~~

Fantasic thread by the way. VERY encouraging to hear of a win! I’ve read this whole thread and I’ll read it again- it’s THAT good and so are YOU.

You are my new hero by the way. Your new ridiculous yet fashionable cape is in the mail- check your email for tracking number…

Now go ON with your badass self!

Good energy to you and yours,

Boomer

[Gabe]

#1178828

Hi Amy. I was wondering where you’ve been and thought maybe you were having some post-op adjustments. Thanks for being so candid and sharing. I know it’s not all easy and perfect with the TT and fully expect to have the same adjustment issues myself.

Hopefully the adjustment in hormone will work as quickly as the nosedive did!

You’re my inspiration so hang in there!

Best wishes, Karen

[Kimberly]

#1178829

@Amy – Thanks for the update…sorry that you are in “two steps forward, one step back” mode! Hopefully, this latest dosage adjustment will bring you some relief!

@Boomer – Good question on the pain issue…in fact, you might want to start a new thread with that question to get some additional feedback.

[amosmcd]

#1178830

It’s been just a month since my TT and thought I would give another update.

Since dropping my levothyroxine from 100mcg to 75mcg, I’m feeling a little better. The anxiety has really dropped, heart rate good, palpitations gone. It took about 4 or 5 days to notice a change. Still not having a ton of energy. I had stopped walking because I just didn’t have the oomph to do it, but am now forcing myself to walk for 30 minutes every other day, because I don’t want to get out of shape. I’m not quite sure why I’m still not feeling energetic like I was before, but what’s the buzzword?…oh, yeah–patience!

My incision continues to heal well. I think the swelling will take another month or so to go completely down. It’s not soft tissue swelling, but a hard ridge, which is why it’s taking a lot longer than the soft tissue swelling you get immediately post-op to go away. I’m using Vitamin E oil that I got at Fred Meyer (Kroger’s) without any allergic reaction. Still massaging the incision. As I mentioned in another member’s thread (Cyclist?–sorry, can’t remember the exact name!) my incision is still very tender. I’m getting ready to go on vacation the last week of June and bought some V-neck tops, which don’t rub on the incision like a regular t-shirt does.

Speaking of vacation, not sure how I’ll do this year. Last year was very active (it’s a camping vacation) with hiking, kayaking, swimming in the lake, tons of walking everywhere. Not sure how much I’ll be able to do this year. Going to bring more books and maybe just hangout at the lake and read and relax. Have to avoid the sun to prevent permanent redness of the scar. Sunscreen will help, but the surgeon said to cover it up. Can’t cover it with any sort of fabric since it’s so tender, so maybe a large adhesive bandage that doesn’t stick to any part of the incision. I’ve seen some.

What else? Well, my voice has definitely been affected by the surgery. I have trouble with raising my voice at work if I need to call to somebody across the room. My voice isn’t weak, it just isn’t strong enough to do that. Normal volume is fine. My voice seems deeper, and it will break if my voice jumps up to a “high” note while speaking some times. Also, singing, which I enjoy doing but am not great at, is proving hard right now. Can’t hit high notes, but can hit notes lower than I’m used to. I am not allowing myself to freak out about never being able to sing again, because my surgeon told me pre-op that most patient’s voices are fine in a few months and she’s never had a patient go past a year with any voice problems. Definitely will be seeing her when I get back from vacation if my voice continues to be an issue then to make known it’s an issue. I plan on bringing a whistle with me on vacation so if I need to get my friends’ attention and they can’t hear me unless I shout, I won’t have to shout loudly, since I can’t.

I’ve noticed that I’m not gaining weight, but am putting on a tiny bit of fat around my waist. I think it’s mostly because I’m not exercising anywhere near as much as I was, but I’m still eating the same! I’m really not wanting to gain any weight or fat, but I’m very slender since losing the 36lbs I lost before being diagnosed with Graves, and I like it. And if one more person at work tells me I need to gain weight, I will scream (hoarsely, but I’ll scream!) I’m 5’=6″ and weigh 125lbs. Healthy BMI. I was too skinny when I had gotten down to 120lbs. But I gained that back once I was on ATD’s.

So just waiting to get my energy back, and trying not to feel discouraged. It’s a journey and again, I need to be patient.

For those with upcoming TT’s, or are just post-TT, don’t let what I’m going through scare you. I’m gradually feeling better, and my endo told me I would start feeling a lot better after a couple months, and it’s only been one month. I have no regrets.

Amy

[CycleColo2013]

#1178831

Amy – you can’t scare me!!! 😮 Seriously, I am comforted by your details. It is helping me keep my expectations in check. Tomorrow will mark a week since surgery. Today was the best day yet in terms of having any energy whatsoever. Though I must admit there were two times during the day I experienced some sort of outer world exhaustion that hit like a ton of bricks and ended up sitting at the kitchen table staring into space.

I used to be an overweight sedentary smoker that considered strawberry pop tarts a serving of fruit, so I am with you on the desire to leave those pounds behind. I’ve gotten the, “oh, if you lose any more weight you’re going to disappear.” Hardly. My BMI is still to high, I’ve actually got another 15 or so pounds to go but I am not in any rush.

I am worried that by getting the beast hacked out I may have given myself a setback in stamina when it comes to riding my bike. So I am taking your advice and looking upon it as a journey. I figure if I did it once, I can do it again, and it’s like you said – I have no regrets. I know this is part of moving toward a healthier existence. I will get there if I am patient!

Thank you so much for all your updates….keep ’em coming please.

Cheers,
Bill

[Gabe]

#1178832

Hi Amy,,, thanks for the update…doesn’t scare me…reality is always better than wondering, guessing, stressing, supposing, etc. I’m glad you’re on the mend and starting to feel better. I hope I end up with a better singing voice than I have now..my husband says I can’t carry a tune in a wet paper bag!

Cheers!
Karen

[amosmcd]

#1178833

Hi, Bill–

I hope you get more energy back soon. In spite of thinking it’s just a little thyroid gland, it is major surgery, and that takes a toll on top of what Graves’ has done to us to get us to the point of needing a TT!

I felt better the first time I walked after the 2 or so weeks I had stopped. Like, “okay, I can do this–yay!” I’ve cut down by 2/3 what I had normally been doing. If you’re worried about your cycling, you can always hop (crawl?) back on your bike and just go for a spin around the block, just so you know how it feels. Definitely err on the side of doing a lot less than you usually do.

Thanks for your posts as well. It’s nice to have others with me on this journey.

Amy

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