new diagnosis of pap. thy. CA - Please rspond!

[skipandflip]

I had a total thyroidectomy on 9/18/09-+ Pap. Thy CA.  I am currently taking cytomel 25mcg daily and will stop in 2 weeks to prepare for RAI.  I also have Paralyzed left vocal cord.  I have the worst fatigue I have ever had, am getting episodes of rapid heartbeat, ringingin the ears, shortness of breath with any exertion.  I feel like I can barely get through the day.  Has anyone else experienced what I am going through??  Please reply.  Thank you...

[AnglLdy]

I do think the tiredness, brain fog, aches, and a ton of other symptoms are 'normal' after TT.  I had mine 5/26/09 and had a time getting the hormones straight for my body.  Including sitting in 90 degree weather, in the sun with a blanket wrapped around me because I was freezing!

I was fortunate though and never had to stop taking my levoxyl for the RAI.  Insurance covered most of the thyrogen shots and with those you do not have to go off of meds to go completely hypo prior to RAI.  The uptake afterwards showed very well, so it worked great for me.

Now, post RAI, the endo has upped my meds once more (levoxyl 133.8mcg) and I'm back to working full time (as a Social Worker - so my brain is definitely needed!)  Still use my lunch break for a quick (30 min.) nap and it helps me get through the day.  I just keep a small pillow in my car, drive to a nearby shopping center, put my seat back, set my cell phone alarm - and rest.  Otherwise the only real issue I still fight seems to be the aches (behind my knees and shoulders mostly)  Sitting for short periods of time the backs of my knees hurt like crazy when I stand - then seem to ease up as I walk some.  *shrugs*

Everyone seems to have different symptoms - the key is getting the hormones straight for your own body.  Thankfully, both my endo and my general Dr. believe in treating the symptoms more than the blood tests and since I had papillary cancer the endo wants to keep my blood work on the high end of 'normal'.

It does get better - in time and with the right dosages of meds.  But, it does take time to find the right med or combination of meds.  Keep working with your doctors and make sure you have the right doctor(s) for you!

Blessings!
Jamie

[Jo0614]

I hope you get positive results regarding your vocal cords.  I was lucky and did not have any problem with that.  Let us know when you go hypo so we can offer support.  Don't do like I did...I caught H1N1 after being off meds 5 days!  No fun!  But I got through it and now I am going in for my RAI in 3 days so I am getting there.  I am down to working 1/2 days this week, and sleep about 10 hours every night with a 1-2 hour nap in the afternoon. The best advice I can give is be prepared for the diet.  I made some low iodine bread, muffins, homemade peanut butter, salad dressing, etc. to have on hand.  I packaged the breads in individual bags and put them in the freezer so they are easy to grab.  Planters makes a no salt cocktail peanut that is very good and easy to grab a handful at work.  In the future, I would have made more "meals" like soups.  I ended up making a meatloaf when my TSH was about 50 and should have had that done earlier.  Good luck!

Jackie

[MANmom]

I went through it in June and July of this year, unfortunately I never did get Cytomel or anything else.  I had two surgeries, one in April, one in June, I was already hypo in June.  I had to wait SEVEN WEEKS after the second surgery for my RAI...my TSH was 186 and I thought I was going to die.  I had ringing in the ears, I rolled out of bed around 8:30 am, then got breakfast, walked a mile or two when I could, came home, ate lunch, went back to bed, then tried to wake up after a few hours so I could get my kids fed.  Then I just crashed again until the next day.  It was miserable!  My brain was foggy, my eyes and face were puffy, my voice was hoarse, I gained 20 pounds, I was a mess...but the day I could take my synthroid, I took it in the early morning and went back to bed.  About 20-30 minutes later, I felt a rush over my whole body, like an adrenaline rush, only much stronger.  It happended twice.  I started feeling better withing a few days, every day gets better.  Then I got used to the dosage, was still hypo, and am now on more synthroid (.175).  Since then I think that I will still need to be adjusted up, but it takes forever...my next blood test is in November.  Keep your chin up, lots of us have been through it, just look out for the signs of myxedemic coma, if you get really really hypo, it can be dangerous.  But I went 7 weeks with no thyroid meds at all, so two weeks will be miserable, but probably not dangerous.

[skipandflip]

Thank you all so much for your replies.  It helps to know there are others that understand.  I am going to call my endo. tomorrow about increasing the cytomel.  I am also very afraid of the 2 weeks before- completely hypo. although I feel pretty bad right now.  I already went to the Voice clinic - saw ENT and speech pathologist.  I have a EMG of pharyngeal nerves on 10/26.  My left vocal cord is paralyzed and the right is "quivering" according to MD. They said this test may give them a better idea of whether it is permanent.  Thanks again - I'll keep posting.

[Jo0614]

I am going through the same thing also.  After TT on Aug 22nd I was put on 50 mcg of cytomel just like cynlynne, and felt pretty good when I was on it.  Now that I am off (I have been off cytomel since 9/28) and preparing for my RAI this Friday the 16th I am feeling a lot of the same things you are describing.  My husband and I are self employed and my job is office work, but I can only make it until about 1-2 in the afternoon.  My doctor told me not to drive until I am back on meds.  1 week ago my tsh was 42, and I don't even want to think about where it is now...

Since you won't go completely off cytomel for another 2 weeks, maybe an increase would help you get through since it is fast acting.  I would check with your doctor and see what he or she thinks.  No reason to be miserable if you don't have to be.

Just keep in mind it is a short time.  That is what I am doing and hopefully it will all be behind us soon!  Hang in there!  Let me know how you are doing.

Jackie

[mbell19]

I remember when I went through this exact thing almost 9 years ago.  The two weeks off meds are not great - but hang in there, that's all you can do.  I was able to work and make it through my day and hopefully you guys can as well.  Try to rest up as much as you can at home.  

Regarding the vocal cord - see an ENT after you're finished with RAI.  My brother also had TT due to cancer and had the paralyzed vocal cord.  The ENT was able to do some therapy and help him greatly.

[cynlynne]

I am currently in the same situation as you are.  I had a TT on 9-14 and was diagnosed with papillary thyroid cancer.  I don't care what they say about it being the best type of cancer it is still scary to hear.  I still hyperventilate when I stop to think about it.

My surgeon also put me on cytomel until I could meet with my endo.  However, he put me on 50 mcg daily.  I take it twice daily.  Once when I get up around 6:00 and then again around 3:00 in the afternoon. I do get tired and I do have some shortness of breath but I'm not experiencing the complete fatigue that you seem to be experiencing.  It sounds like to me that you are already beginning to experience symptoms of going hypo.  

I'm nervous to go off the cytomel and go completely hypo.  I'm not sure how I'm going to make it through my day.  I'm a teacher and I have a very demanding group of 2nd graders this year.  I have already missed 2 1/2 weeks due to the surgery and I don't feel comfortable taking off any more time than necessary.  I'm hoping to be able to work while I'm not taking meds and then take off a week for RAI.

I'd be very interested to hear how things go for you over the next several weeks.  I'm sorry I can't be of more help to you.  Good luck to you.  I hope that everything goes well with your RAI.  I also hope that you can have your levels balanced out quickly.  Also best of luck with your vocal cord.