[AzGravesGuy]

in reply to: Well, here goes! #1173693

Recheck went well. Said I was healing nicely.

The tape is off! What a relief!

Pathology came back clean. No cancer but “a multi-nodular Graves’ disaster” per the PA. I never had nodules pre RAI.

They seem to think my voice…or lack of…is normal at this point so fingers crossed. Recheck again in a week, just to be certain. If not they will refer my to a SLP. (Thanks Laurel for letting me know they existed! I actually sounded smart asking about one today.) It may not come to that but if it does, he has one he refers to.

Sue you are 100% correct, a bad day post-op is so much better than a good day pre-op. It is really amazing.

So far so good! My only regret is not doing this sooner.

[AzGravesGuy]

in reply to: Well, here goes! #1173689

This afternoon is my recheck with the surgeon. 11 days post op. Hopefully they will remove the tape today. I am kind of grossed out by it. Lol!

My incision itches, like nerves healing, today more than ever. Since there is almost no swelling left and the surrounding area is not discolored or bruised anymore…I really want it off today.

My voice is getting stronger every day. I read online that guys can be more affected by the surgery because our vocal chords are thicker. I think once the residual swelling goes down completely my voice will be back 100%.

After researching the symptoms I feel, I am not so sure I am “hypo” just yet, I think I am normal. It has been so long I have forgotten what normal is. Until I get my levels done, my mindset is to relax. Gone are the days when there was “always something wrong with me”. It is an adjustment I am happy to embrace.

Other than the voice issue, I feel better than great. I have not felt like “me” in many years. I have energy, I have ambition, I have hope. All of my Graves’ induced demons have been abolished and it is awesome.

[AzGravesGuy]

in reply to: Aye caramba! #1182119

Hi Sara!

Your symptoms sound pretty on the money with Graves’. Most endo’s don’t realize that with bloodwork in normal range, symptoms can still persist.

Don’t let it get the best of you. My endo was not exactly full of encouragement when I told her I was going for a TT, but once I made it clear it was going to happen with or without her input, she changed her tune.

My psychiatric symptoms have all disappeared since my TT. No anxiety, Graves’ rage, insomnia, or indescribable strange feelings.

Monday is fast approaching and I am sure your mind is racing with presurgical jitters. That is normal for anyone. Let them flow through you. The more you try to stop them the worse they become. In the days leading up to my procedure I was giddy and couldn’t wait. This was in hindsight a displacement of anxiety. However, now that it is done, I feel foolish for having any anxiety at all.

Life is so much better, so remarkably different!

I know you will find tremendous relief after your “big blink”. The change is instant and uncanny.

If you get nervous in the hospital before surgery, just remember we are all waiting at the finish line, clapping and cheering for you every step of the way. You can do this.

[AzGravesGuy]

in reply to: Well, here goes! #1173688

Today I looked on my Aetna account and the hospital submitted a claim for just under $41,000.00

Kind of took my breath away.

For how I feel post TT, I would pay $100,000.00

Hopefully I won’t have to. Lol!

[AzGravesGuy]

in reply to: Well, here goes! #1173687

Day 8 post TT.

I walked a mile today and it felt great. Afterward I was wiped out for about an hour. This too will get better.

My incision is starting to shrink under the tape. I have reached the itchy stage of healing for sure. I cannot wait for this tape to come off. It does not look as nice (fresh) as it did a week ago. The corners are peeling and collecting fuzz from my shirts. It is doing its job and well I might ad. My incision is clean and healing nicely. The tape just looks pretty bad.

My voice still has not recovered. Anything more than a loud whisper doesn’t happen. My voice tires out after squeaking/speaking for more than a few sentences at a time. Some times after I cough or sneeze ( sneezes are surprisingly painful) I can get a few minutes of a stronger voice but it fades every time. This is extremely frustrating but I was warned many times it could happen and that I would have to ride it out. It will come back, but with my lack of patience…it seems like it has been gone forever.

Have any other TT’ers here had lasting voice problems? What did you do to regain/retrain your voice? Am I overreacting for only being at day 8?

Pounds lost since surgery: none
Pounds gained: 1
Eh, whatever. I am so happy the darn thing is out and all the symptoms that made my life hell went with it, a little weight gain is nothing. It will drop off once I get on the right dose.

I can tell you right now I am not on enough Synthroid. The cold (40’s is cold for us here) really bothers me like it never did before and my face is flaky and dry. Both are unusual for me and coincidentally signs of hypo. Hooooray! The beast has been slain!

Bloodwork next Monday, Endo recheck next Friday.

Thank you all for your support and information. I appreciate it!

[AzGravesGuy]

in reply to: Well, here goes! #1173683

Nothing really exciting to report except my face is now dry and flaky. That is unusual for me after being hyper and greasy for so many years.

I have a small amount of pink discharge under my tape that the dr has assured me is normal. Today it feels a little bit itchy, like the nerves are reconnecting. No swelling or discoloration at the incision.

My adams apple itself hurts today. My voice is still only 50% and tires out easily. I have also been assured this is temporary. The waiting game is frustrating as I miss being able to spew my usual brand of folksy sarcasm. Saying it in a whisper is not nearly as gratifying.

The Synthroid and a glass of water now live on my nightstand. When I get up it is the first thing I do. This seems to work best for me. I am sure once I get back into my work routine it will change again.

Aside from this, nothing new or exciting to report. This has been pretty boring as far as recoveries go. Lol! I guess that is a good thing.

[AzGravesGuy]

in reply to: Well, here goes! #1173680

It feels so good to sleep in my own bed! I had a great sleep and I feel better than I thought I would at this point.

I showered last night which felt awesome. I had a small amount of fresh blood seep under the tape but it was very minute and was not “gushing”. Today it looks fine. I refuse to stress out over it. The swelling is starting to go down today too. The puffy chin bag I woke up with after surgery is almost gone but the area below the incision is still tender.

My voice has returned enough to yell at the cat this morning, so life is almost back to normal. Lol!

Made my first “rookie” mistake. Got up, felt a little woozy so I chugged a protein shake then remembered….Synthroid is on an empty stomach, genius! So today, I messed up. Took the pill anyway.

This is the ONE thing I thought I would remember and I completely forgot. Tomorrow is another day. There is a big post-it on my fridge now that says “STOP!”

Sara, you’re going to do great with your surgery. I really thought it would be more traumatic and painful but it has honestly been no more painful to me than that tetanus shot was a few years ago. Day 2 after and I have a slight ache but nothing worth medicating. I plan on going for a short walk later and then spending the rest of the day watching Netflix. 48 hours after surgery and I am living life (at a slower pace, of course) with no complications. I know you will have a similar experience and we are here for you next month.

I dont know if it is the placebo effect but my outlook on things has changed even more so to positive. I am not terrified of the possibility of weight gain while I get stabilized. Before the surgery I was concerned. Now….eh. Just happy it is gone and nothing is going to ruin the joy I feel knowing that.

Sue, Kimberly, and Raspberry Thank you all for following along. Kowing you are all here kept me confident. I should have been scared of going “under the knife” but not being alone made it easier. Almost casual. I could not ask for more. Thank you!

[AzGravesGuy]

in reply to: Well, here goes! #1173675

Thanks for the advice Sue. I can easily see myself over-doing it once I get out of here. Lol! I am off work until February 18th, so I will be ready to blast through the backlog when I get back. Until then the focus is small projects only and healing.

I had a rough night, no pain meds. I was never in “pain” but moderately uncomfortable from the throat tubing. I think I got about half an hour of sleep. My voice is still really faded and pointless, but it is better today than it was last night. I downloaded a text to voice app and have been using that to ask questions to the nursing staff. That way there is no misunderstanding what I say and I can get the whole sentence out. Very helpful!

No calcium issues to speak of. 2 blood draws so far and no symptoms so I think that bullet was dodged. They are still keeping me until 6pm tonight just to be sure.

The bandage came off a few minutes ago and I can’t believe how….mundane (for lack of a better term) the incision is. It is closer to my collar bone than I was expecting. It will be pretty subtle when it heals up as it looks like a thin sharpie line under the SaniStrip now.

I get my first 100mcg dose of Synthroid later this morning. This is a major event for me. It means “stage 3” of living with Graves’ has officially begun. Better late than never.

Absolutely no regrets! ( Now I cannot wait to hit the gym in a month. lol! ) My new life, my fresh start begins today. Now that this has been completed I can move forward again.

[AzGravesGuy]

in reply to: Well, here goes! #1173673

It is done! Went very well! No memory from surgery. Just a big blink and I was done.

No incision pain, annoying sore throat from intubation.

I am on my 5th cup of ice chips and will start saying this now:

” I wish I did this sooner “

(As soon as I can talk. Lol!)

Thank you to everyone on the forum that posted their TT experiences. No surprises for me. Calm, cool, collected, confident knowing what to expect because all of you were generous enough to share your experiences.

Maybe it is the drugs, but an inner sense of peace has come over me. It is fantastic and I hope it is my new normal.

Thank you everyone!

[AzGravesGuy]

in reply to: Well, here goes! #1173671

Thanks Kimberly and Sue!

I am on my way to the hospital in a few minutes. Not nervous consciously but having some major attitude problems today. I guess it is festering that way. It will all be over soon.

One of my friends sent me a video called Flash Delirium by MGMT. Not my usual style of music, but the singing thyroidectomy scar about 3/4 of the way through was worth it. What happens after it sings is pretty bizarre. If you google the video, it sings right after the lady plays the recorder.. (Yeah, I know….).

Fun stuff! Lol!

My cat won’t leave me alone this morning. I wonder if he knows something I don’t? He is usually pretty aloof.

I will update post anesthesia when I can. For the second time in as many years….well, here goes!

Have a fantastic day everyone!

[AzGravesGuy]

in reply to: Felling ill after I 131 treatment needing advice #1181998

Hi Lori,

I had a cbc done 11 days after my RAI and my wbc and lymphocyte numbers were through the roof.

I freaked.

A frantic call to my endo explained it all. As the thyroid starts to break down from the radiation exposure, the increased white cells are the body’s system for removing the damaged/dying tissue.

She said this is completely normal and a sign the RAI is working. These numbers will remain higher as long as there is still die-back of the thyroid gland occurring.

Your symptoms sound pretty on track for the treatment. Doctors that say “3 days and you will be fine” have obviously never had it themselves. It was about 2 weeks before I felt good enough to work all day, but everyone is different.

If your symptoms do not improve by the 3 week mark, call your doctor and get your bloodwork done again. Most likely this phase of treatment will be just a memory by then.

Good luck and keep us posted!

Rob

[AzGravesGuy]

in reply to: Well, here goes! #1173668

Happy Friday!

I had the last of my presurgical appointments yesterday and I am cleared for surgery on Monday.

These last 3 days cannot go by fast enough in my mind. I am beyond ready.

Any tips for getting the SSKI flavor out of my mouth? It is pretty bad. Lol!

Have a great weekend everyone and I will update as soon as I can.

[AzGravesGuy]

in reply to: Well, here goes! #1173662

Hi Everyone,

Today I had my surgical consult with Dr. Van Lier Ribbink in Scottsdale.
What an awesome experience!

Last week when I told my endo I was going to him, she said if she needed surgery, he is who she would choose.

After meeting Dr. Ribbink my confidence in surgery being the right choice for me has been magnified. He answered all my questions and was extremely friendly. None of the ego I am used to with the revolving door of endo’s I have seen over the years. I wish I had his name 9 years ago when I was diagnosed…I would be in a different place today.

Even so, no regrets. My Graves’ experience thus far has been a tremendous learning experience. No only have I learned more about my condition than I ever thought possible, I have learned more about what makes me tick as a person. With this combined understanding, I am kind of grateful things have gone the way they have. Dealing with the symptoms has forced me to become more “whole” as a person.

I am scheduled to get cut January 27th. Yes, that soon, pending the battery of presurgical tests all come back good. (Ekg, chest xray, and many many blood tests)

To say I am excited is an understatement. Even thrilled is putting it mildly. Any fears I have about the surgery itself have taken a back seat to the idea of eventually living a regulated, stable life.

I will keep all of you posted every step of the way. Right now I am off to go celebrate this new step towards being healthy again!

Rob

[AzGravesGuy]

in reply to: Well, here goes! #1173659

Well, I did not end up getting a needle biopsy. Big relief there!

I have flipped again and am now subclinical hyper. Oddly enough, I don’t feel any different. I still feel really good at this point. We decided to start the Methimazole up again in a week, 5mg a day for the first week, then 2.5mg a day thereafter and recheck blood levels in the middle of December. The endo would rather keep me from going hyper again than waiting to see how high I climb.

My surgery consult is booked for the second week in January. I will ring in the new year with new insurance (thanks Aetna!) and hopefully be thyroid free by St. Patrick’s Day.

Shugie, I have been in the disbelief stage of coping as well. Do not let it get the best of you. Yes other people do have worse life events, but that doesn’t mean our condition is anything to sneeze at either. It is ok and good to cry. (crying relieves stress and releases some great brain chemistry) We all deserve support and the confidence that comes with knowing this disease CAN be controlled, treated, and kept manageable. Learning to be patient is the biggest factor in feeling better. It sucks but it’s the lesson Graves’ teaches us all.

I have had my free and total T checked this year and both were in normal range. My anxiety was over my endo’s reaction to my ultrasound and her choice of words. Now that I have confirmation it is as Raspberry said, just a fried thyroid, the anxiety has disappeared again.

Raspberry, stay strong in your belief that times will get better because they will. You are a great person and a strong person. Don’t give in to the stress. Snub your nose at it and show it who is boss…..you! Graves’ tries to make us forget who is in control of our lives. Don’t lose your perspective.

Diane, Sue, and Kimberly, thank you for your continued support. I appreciate knowing all of you are still along for the ride.

Is it January yet?

[AzGravesGuy]

in reply to: Well, here goes! #1173651

I have been off all meds for 2 weeks and I think I still feel a little hypO, but not bad. New labs will be drawn Thursday of this coming week.

My endo appointment went very well. I actually clicked with this one and am very happy with the discussion we had. Everything was great, she even mentioned the potential for remission.

Then she did an ultrasound.

After muttering “oh god” under her breath I asked what the problem was.

She turned the screen and showed me what looked like a crumpled ball of paper. She said this lobe of my thyroid should look like a smooth golf ball. It did not. ( I asked for a print out of the image)
She then said it was extremely inflamed. I said I have never felt better.
She said if it looks this bad at my recheck in 3 weeks she is doing a needle biopsy for cancer. I said sure.

Then I promptly drove home with a white knuckle grip on the steering wheel and had a massive anxiety attack. Lol!

After calming myself down and coming back to reality, I have decided that whatever we find at the next appointment, I will take it in stride. This disease has thrown my life upside down and tried to fill it with turmoil so many times, I refuse to allow it anymore. Without proof, I refuse to be concerned. I still have never felt more ‘normal’ than I do now and that is all the proof I need that I am headed in the right direction. For the first time in years I feel good. Really good.

I cannot say if it is the diet changes, the meditation, or the maybe the RAI finally working over a year later, but whatever it is, I haven’t felt this peacefull in almost a decade. I have some joint aches which make me believe I am still subclinical hypo, but I also remind myself I am not a spring chicken and some mild aches are not uncommon, especially after the havoc Graves’ puts our bodies through.

My Aetna insurance through the marketplace starts in January, so I just have to make it through December without any major incidents. I have lived for years without insurance with Graves’ so this should be an easy challenge.

Every day for the past year I have told myself it will get better. Finally feeling some results is the best feeling ever. “Profound remission” or not, I refuse to let Graves’ or Graves’ induced anxieties control my life.

I hope everyone on this board finds their magic combination of diet, medication, treatment, and mental strength to overcome this disease. I still have a ways to go but there is hope. Never give in to this disease.

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