[scubarn]

#1019778

I was finally diagnosed in 2001 with Grave’s & TED after many years of symptoms without positive thyroid lab results.
I have been on PTU since 2001 off & on depending on my blood tests that I have to do every 3 months. Having gone into a
remission briefly, I kept taking PTU in hopes that I could avoid surgery.
RAI was not an option due to the exophthalmus and lid retraction problems.
My health and quality of life is deteriorating with muscle atrophy, increased hair loss, ocular distortion, activity intolerance, osteopenia, chronic anxiety, nervousness, irritability, nausea, and extreme fatigue.
Being a long time surgical recovery room nurse, surgery is a last option for me. Suffice it to say that Grave’s Disease has gotten so unbearable for me that I am willing to let my colleagues take a scalpel to my throat and airway. Understand that these are the same colleagues that have dealt with my hyper-ness for 2 decades!
I know many others have gone before me so I am writing this post to get feedback on how others have done after a total thyroidectomy.
1. How long before you returned to work?
2. Any problems with your voice after?
3. Breathing or swallowing problems?
4. How long did it take to feel "yourself" again?
5. When did your energy return?
6. Do you feel any improvement in your moods?
7. Did you start looking forward to things again?

Karen Schofield, RN

[kaicee118]

#1073988

I am also probably going to have surgery later in the spring, so I am very interested in the answers to these questions also! Anyone?

One more question – how long were you in the hospital?

I especially liked the question, "Did you start looking forward to things again?" I am waiting for that day…I am so hoping to feel better by the time the warm weather is here…

Thanks!

[DianneW]

#1073989

I’ve sent email to one of our volunteers who had a thyroidectomy several years ago with good results, asking her to answer these questions, if she has time. I’m sure others also will respond. I can look up some others I’ve corresponded with if necessary, who I’m sure will be glad to come on the board and answer these questions.

Best wishes,

[MonikaOH]

#1073990

I am condidering surgery as well so I hope to see more on this page

[cajadajp]

#1073991

Hi Karen,

I, too, am an RN who had a thyroidectomy in 2003. My experience turned out great. I actually was not working by then and have not returned to work, so can’t answer those questions. I can tell you that I immediately felt better getting that sick thyroid out of my body. The heart palpitations stopped immediately. I did not have trouble with my voice; in fact, my singing voice was better without the enlarged thyroid. No swallowing or breathing problems either. I had an excellent surgeon who does lots of thyroidectomies.

I would say my overall feeling of well being came back starting right after the surgery. I was able to quit the PTU, which the rhuematology folks at UCSF thought had caused the scleritis of my right eye that I also had. I had to stay in treatment for that with steroids and eventually methotrexate. Those drugs did cause me some trouble, and I now have fatty liver disease as a result. I have regained my bone and muscle strength though.

I have stayed on between 100-150 mcg of Synthroid since the surgery. I do have other health problems, but I feel the thyroid problems are long behind me now.

I do hope you will do extremely well with the surgery and come out feeling much better!

Carole

1. How long before you returned to work?
2. Any problems with your voice after?
3. Breathing or swallowing problems?
4. How long did it take to feel "yourself" again?
5. When did your energy return?
6. Do you feel any improvement in your moods?
7. Did you start looking forward to things again?

Karen Schofield, RNscubarn

Posts: 2
Joined: Thu Jan 22, 2009 6:09 am

[scubarn]

#1073992

Thanks Carole.
I hope I can keep working since I am only 49. It is hard to always pretend that I feel okay. I never know how I will feel from day to day or even minute to minte!

[cajadajp]

#1073993

Hi again, Karen,

I want to encourage you again–that you will most very likely start back on the road to health post thyroidectomy. Prior to treatment I had muscle weakness, osteopenia, shortness of breath, high blood pressure and high pulse, extreme irritability and anger, hair loss, feeling too hot, etc., etc. I know my work colleagues were wondering what was going on with me, especially since I had once been a very level headed, organized person–and a supervisor of others too. It was such a relief to know why I was having all those problems. I clung to PTU for five years against my physician’s recommendation, because I was so thankful to feel better. I also had hopes that I would go into remission, but my antibody titer was very high, and I think I am right in my conclusion that the high level of antibodies made remission very unlikely.

Even though PTU improved my life quite a bit, it did cause me problems eventually in the autoimmune attack on my right eye. That was serious, and the drugs that reversed it caused other problems—fatty liver disease and temporary muscle weakness and bone loss once again. The thyroidectomy is what really made the total difference in bringing me back to health. I was very fortunate to have an excellent surgeon, and I had a very good post-operative course. Another thing I was really glad about was that I no longer had to deal with my thyroid in a state of dying. It was gone, and the problems associated with it were gone too. I hope that encourages you about your surgery!

My prayers will be with you!
Carole

[kaicee118]

#1073994

Hi Carole – I’m just curious – when you say your antibody titer was very high, do you remember what the numbers were? I just wanted to compare them to mine:-)

Thanks!

[scubarn]

#1073995

My titer was 978 if my memory serves me
(what’s a memory, right?)
” title=”Smile” />
Karen

[gardar]

#1073996

Karen,

I had the surgery 10 years ago, it took a long time to get to the point of agreeing to the surgery, but the story is exactly like yours. I was out of work for 6 months before doing the surgery.

To answer your questions:

1. How long before you returned to work?
1 week

2. Any problems with your voice after?
None what so ever

3. Breathing or swallowing problems?
None what so ever

4. How long did it take to feel "yourself" again?
This is the one that got me – I did not do the proper follow up so for me it took over a year, with a lot of complication. I urge you to get the proper follow up. If so you should be back to yourself in a matter of weeks.

5. When did your energy return?
About 2 weeks

6. Do you feel any improvement in your moods?
Completely myself again.

7. Did you start looking forward to things again?
All the time.

[scubarn]

#1073997

Dear gardar,
Thanks for the info.
I had great surgeons and nurses. Unfortunately I am having a rough recovery. I have much difficulty swallowing liquids and choke a lot. My respirations
are stridorous and labored. The thyroid was diffuse, quite sticky, and I am a tiny person so the neck muscles got stretched for sure in attempting to remove it.
I need to take 4,000-6000 mg in Calcium replacement daily right now which leaves no appetite for much food. The pills are a lot of fun so far……(not)
I’ll get one caught in my throat and it won’t go up or down so I end up gagging on it and it shoots out of my throat and across the room. Very glamorous. (not)
The left layrngeal nerve was temporarily troublesome, but my voice is almost back.
I may also have a small amount of vesicant extravasation at the old IV site which can lead to skin necrosis, but I am already past the window of Regitine treatment. It’s watch & see for now. The surgeon spoke with me today (Sunday) and is wanting to see me first thing tomorrow a.m.
I have not needed pain medicine since the immediate post-op period. Of course it hurts some when I cough, but I see no reason to add more pills to this regimen.
It will take more time to recover, but RECOVER I will!

[Mommy]

#1073998

Hi,

My situation is a bit different. I am not the patient, but the mother of a 3 year old little girl with Graves’. She was just diagnosed in July 2008 and had a total thyroidectomy in November 2008. Since she is so young, many of the symptoms she has not "told" me about, but I have observed. I felt like those were the longest 4 months of my life between her diagnosis and surgery and so I cannot imagine what you have been going through all of these years. That said, her surgery was the best decision for her. I am thrilled we did it when we did. She had a large goiter (which was even larger than expected once they got in there to remove it). Her surgeon was amazing! He was the one I found when I searched for the best thyroid surgeon in the country and was also recemmended to me at the convention in SD by the keynote speaker! (Dr. Terry J. Smith, MD) (I was so relieved to find out that the Dr. she was scheduled with really was "the best". That gave me such comfort). My daughter had surgery on Nov. 19th at 1 in the afternoon at UCSF with Dr. Orlo Clark. THey sent her home the following afternoon around 3. She had no breathing issues after surgery. We came home and she rested for a couple of days. After the 3rd or 4th day, her energy was coming back and you could just tell she felt better. Trust me…I was an absolute wreck at the thought of someone taking a knife to my baby’s throat. But, I knew that she was in the absolute best hands and that it would make her so much better. She returned to preschool after 2 weeks and was basically back to normal. Her behavior has improved 100%…..it is like night and day. She can focus and is starting to learn to read! (Very exciting for me…I am a first grade teacher!) She is happy and full of energy. When she gets upset, it is "noraml" 3 year old attitude that we see now. Her voice actually was clearer after the surgery. She had gotten a bit raspy the last 2 months before the surgery and the surgeon said it was from the pressure of the large goiter. Oh, thank goodness we took that awful thing out! She still has the eye disease….it is too soon to tell with that. Her eyes improved a bit and now I feel like they are changing again. But, from what I understand, that is seperate from the thyroid and can come and go throughout your lifetime. So, I hope it doesn’t get worse for her.

It is important that you are in the hands of a skilled surgeon! That is what Dr. Terry J. SMith, MD (keynote speaker at the NGFD convention in SD, October 2008) stressed to us all. (also, it just seems obvious) He also said that he and his colleagues NEVER recommend medication longer than 18 months, period. He believes it should be used as a temporary solution until a patient decides on a permanent solution such as surgery or RAI treatment.

I know you must be terrified. But, if you have access to a highly skilled and experienced surgeon, I would strongly consider the surgery. I hope I have helped answer some of your questions. Good luck to you. I wish you the best.

[scubarn]

#1073999

You had the surgeon I would have gone to had he not already retired. As for the PTU, I was in remission briefly, and at one pill a day with no side effects, the decision to wait was
easier. When PTU stopped working well I quickly moved to plan "B" which was the surgery.
I’m glad it’s out, and I hope the side effects go down soon too.

[Mommy]

#1074000

Karen,

I am so glad you have the surgery behind you…..congratulations. I apologize…when I responded, I didn’t realize you had the surgery already. It sounds like you definitely made the right decision and I am sure that the side effects you are dealing with now will soon improve. I am sure it is nothing compared to the awful effects of the past few years. I wish you all the best in your recovery.

Jennifer

[nina]

#1074001

Hi Karen, By this time you, no doubt, had the total thyroidectomy and are probably feeling well. I, too, am a RN — semiretired, so I was reluctant t o undergo any surgical procedures. I was able to avoid the orbital decopression surgery by having orbital radiation treatments (which seemed to have worked), but I’m experiencing dry eyes which I was told was a complication of radiation therapy. But, I knew in my heart that I had to have my thyroid gland removed. I had this surgery on Jan. 8. 2008, and, to my surprise, everything went well. I was only hospitalized overnight, so could go home the next day. I only had minor discomfort and no complications. I, too, had an older, very experienced surgeon (who I remembered from nursing school when he was a resident). I would say that I generally feel beter after having the surgery — my pulse rate has returned to normal, I’m not as nervous, etc. I was on both IV and oral steroids for about a year. The initial IV steroids were given when I was in danger of losing my vision because of the swelling behind the eyes. I am 68 years old, so am not a young person and do have some other health condtions such as moderately severe COPD — I never smoked, worked in a factory, etc. —I’ve been taking 125 mcg of Synthroid for about the last 8 months. My last TSH level was 0.4. It was 1.5 less than 5 months ago, so I;ve asked my endo MD if he feel other testing should be done. Hope you’re doing well. Nina

[Author]

Posts