Give it to me straight....post surgery physical/mental

[KJ5854]

I need your help!!  I'm having a TT on February 5th because I have a nodule that through FNA is suspicious for cancer and my doctor believes based on the nodules characteristics that it is cancer.  Also, I have Hashimoto's.  I didn't know I had any of this until the FNA on Dec. 5th so this is all very new to me.   I have never been on any thyroid medicine since when I was diagnosed with Hashi's they knew I'd be having my thyroid out, so no medicine.  Currently, my Hashi's symptoms are a 4 on a scale of 1 - 10.   I was also diagnosed as insulin resistant back in October '07 so I've been eating/exercising to manage that which has helped me feel better physically.  Now, I'm just overwhelmed worrying about what's to come after surgery.  

I'm concerned about how I'll feel after surgery when I have no thyroid and I'm not on medication. Right now (as of 10-3-07) my TSH is 4.6.  Once my thyroid is out won't my TSH rise higher?  Will I start to feel all the Hashi symptoms but worse?  I'm assuming I'll have to do RAI since my doctor believes I have thryoid cancer.  What does TSH have to be for that?  I heard 30?  Won't I be a mess by the time my TSH gets to 30?   Do you really have to wait 6 weeks post-op for RAI?  My doctor said that I wouldn't start any thyroid meds until at least 6 weeks after surgery.  

I fear I'm getting ready to go through 6-8 weeks of hell!  I feel sorry for my family.  I'm 39 and a stay-at-home mom.  I have a wonderful, patient, loving husband and two daughters ages 7 & 10.  We are a very active family to say the least.   My husband's job is such that he works from 5:00 am to 5:00 pm. and I handle the homefront.  I'm so concerned that I'll be so wiped out and wacked out after this surgery that I won't be able to take care of things.  

You all are so knowledable and helpful.  Please pass on your insight about this to me.  I really need to know what to expect!

[Joni65]

Hello
I had my TT on 12/21/07 due to cancer and it was not that bad!  I had some discomfort and a sore throat, but they will give you something to make  you comfortable!  I was able to receive cytomel 25mcgs one tab twice a day from 12/27/07 through 1/11/08 which is to help make me a little bit more comfortable while I wait for RAI.  I came home the next day and felt pretty good.  I was driving by the 4th post OP day and went back to work one week after surgery!  I will let you know how I feel during HYPO HELL!  I am not for sure when I get to have the RAI!  I am scheduled for lasbs on 1/24/08 and then I see the Endo on 1/28/08 and I guess then I will find out about my appt. with the radiologist and more on RAI!

Joni

[hopeful436]

As my dear friend, Pep 88 has told you, it is really no big deal.  I had a TT on 12/18 (papillary cancer) and quite frankly, feel great.  The only hard part for me was not driving for a week.  I go for a f/u with my otolaryngologist on the 17th and then we plan the RAI.  My neck is still a little swollen right above the incision, but otherwise NO BIG DEAL.  The surgery was a complete breeze.  Your throat might be a bit sore (like when you swallow), but all I took for the pain (even in the hospital - which was nothing more than an overnight stay) was Tylenol.  They gave me a script for Percocet to take home, but I never took them.  You will be FINE.  I cannot speak about the RAI yet, but will keep you posted.  You are in all our prayers.  

[KJ5854]

It's good to hear that someone's ordeal wasn't near as bad as what I've been thinking is going to happen.  I will talk to my doctor about getting on some medication directly after surgery.  Since this is all so new, I haven't met with my future endocronologist.  I got the impression from my doctor that I wouldn't meet with her until weeks after the surgery.  I wasn't sure if otolaryngologist doctors, which is the doctor that is doing my surgery, would prescribe Cytomel and such.  I have an appt. with him next Wednesday and I'll be asking lots of questions.  

[pep88]

You have all the questions I had right b4 surgery.  (TT in Sept '07 for Papillary cancer, RAI in November '07)  The surgery itself is nothing like the c-section I had, or an ankle surgury.  A breeze really, compared to them... Healing was quite quick.  And I was put on Cytomel directly afterwards to aid in recovery and energy (you should ask your doctor about that).  I had to go off the Cytomel for only 2 weeks prior to RAI (much shorter half-life than the T4 drugs) and stay off for one week after RAI.  

The LID and severe hypo weren't as bad as I had built them up to be in my head.  I had no idea about "hypo-hell" or even what TSH, T4 & T3 really meant, except for reading a bit in the forum here.  I had gotten this idea that I'd be so lethargic I couldn't move...  Rented tons of movies and waited for the worst.  My TSH climbed to 60-something a week before I ate the pill, and I've heard of much higher!  I don't think I ever got to the stage that I was useless (to complete tasks and such, forgetfulness and brain fog, yes...) until I'd actually swallowed the RAI pill.  Then after two days, I had major nausea.   But as soon as I began taking the T4 drugs and some T3, the nausea went away, and I was up and running.   If you ask me, out of the entire thing, the couple of days of nausea and having to stay away from my daughter when I got home from the hospital was the worst part of the entire ordeal!

All in all, a much better cancer to have than my sister's breast cancer...  All that nausea for weeks and weeks on end... and the hair falling out.... I felt so sorry for her... YUCK!

Good luck with your journey.

[KJ5854]

Thanks for your post!  The weeks that go by after the first 7-10 days are what concern me the most.  I guess it's the "unknown" that scares us all.  

I'm eager to hear from those of you that had TT and the RAI.  I've heard about this "hypohell" but need details.   I imagine everyone reacts differently but with TSH levels at 30 wouldn't this send anyone into major hypo symptoms?

Thanks!

[ChitChatNine]

Hello and welcome to the board.  Personally, I have had a partial thyroidectomy but not a TT and my cancer was so small we decided to treat by supressing with Synthroid and watching the other side ev. 6 mos via ultrasuond so I cannot give you first hand experience preparing for RAI after surgery, etc. but many on the board will be able to give you some ideas as they refer to it as "hypohell" for many.

You are in a great spot .. this board is just fabulous and offers new friends and wonderful support and knowledge, too, along this new venture for you,

The surgery itself is not all that bad compared to other types of surgery and I think you will manage with your house resp and kids resp okay after the first 7-10 days but they will have to understand as the weeks go by w/o med that you will experience many symptoms sometimes as you go more hypo.

I hope the FNA and u/s are not accurate ................ Cheryl (papillary microcarinomas 1/07)