Meds after Partial Thyroidectomy

[JPW0715]

Can people tell me their experiences regarding taking meds after a partial thyroidectomy?  I am only two weeks out and will get my labs drawn in about three weeks, but my doctor seemed to think I will probably not need any?  However, I am reading different opinions all over the internet.  Thanks!!

[may08261]

HI there KoalaEm,
Before you had the partial thyroid removal, were you hypo or hyper? I've been hyper/grave's disease for about 4 years now and I can't come to figure out what I want to do. I read about your story and I just want to follow up with you about how your process been now. I would love to hear from you and your experiences without the other half. Did you ever end up taking medications? Do you still have the other thyroid?

-Mayla

[flyers1]

I had an mri of my neck (herniated discs) that showed a lesion on my thyroid. The u/s confirmed that there was a nodule approx 1cm and they recomended fnb. The right side looked good. Fnb favored ca. Left Lobectomy was done on 9/21/07. After seeing the path reports the frozen section said that the tumor was suspicious. Surgeon still only took the left side. When I found this out I was furious. I suffer from anxiety attacks and getting me down for surgery was very difficult, but I did it. A second surgery would be even harder. When I spoke to the surgeon after the surgery he said that IF the final path report shows ca he will bring me back the following week and remove the right side. I expressed how angry I was that he didn't take the entire thing. He said that the u/s didn't show anything on the other side and he felt around and didn't feel anything either so he wasn't going to remove healthy tissue if he didn't have to. Three days later the final report came in showing that it was a pap ca. I was so angry. But they said that it was completely encapsulated and all of the surrounding tissue was good and my being under 45 was a plus. No further surgery and the endo said no rad. I couldn't deal with that answer because everything that I read and everything that I was told contradicted it. I went to another endo (at a dif hosp) for a second opinion. At first she disagreed with the 1st but she did a u/s and wanted her path people to look at the biopsy slides. After their reviewing she said that it was a low grade pap, no angio invasion, 1 focus, stage 1. She said that this was the least worrysome thyroid ca to have and she was not going to put me through the second surgery. She told me that I could stop worrying. Easy for her to say. She would follow my bloodwork, get a u/s every 6 months and see her every 6 months. I was doing pretty good accepting all of this until my hair started falling out. Now it is my prime focus again. A friend that had non-hodgkins lymphoma told me that this will make me different but stronger. I definately feel different but I feel very weak and helpless. I don't like what this has done to me. I don't like the person that it has turned me into. Maybe if we ever get the hair loss thing under control I can get some control of my life back and only worry when it comes time for the u/s. I still have other physical issues (herniated disc problems and a shoulder tendon tear) to deal with. I just feel as if I can't handle anymore.

[Avee3]

Unfortunately, I may be one of those who end up on meds after partial.  My right side was removed in November.  My TSH was drawn at 3 and 4 weeks post-op and found to be slightly elevated, meaning mild hypothyroidism.  I am in the deciding phase right now if I want to re-test in 2 months or start a low dose of medication.  My docs did not think I would need medication but I'm not all that surprised because thyroid disease is very prominent in my family. I had normal function before surgery but I wondered if my other half could do all the work. We'll see what happens.    

[KoalaEm]

Hi, and welcome.
Had 1/2 my thyroid out 6 weeks ago .I am not on meds at all.
My blood came back within the normal range- I will be retested and reviewed in 6 months.  Unless I notice a dramatic change in which case I will seek an earlier review.  Hard to work out if my current triedness is thyroid related or from my recent gallbladder surgery and all that 'seasonal' running about. At the moment I am chalking it up to the latter.

I had a 'suspicious' nodule, it turned out benign but the thyroid itself was found to have thyroiditis.  So far, the remaining half has stepped up and produced enough to compensate for the lost 1/2- but in time (who know how much time...) it will undoubtedly fail.  My main concern is that it is now 'over working' trying to compensate and wondering if that then makes it wear out quicker? Not sure if that's the case.

Em

[ChitChatNine]

When was your pap ca diagnosed .. during or after surgery? My results were upon final pathology 48hrs later .. the orig 2 nodules were totally benign on frozen section and final pathology.

Here is a guideline the Endo's use as of May 2006 unless something else has changed - My second opinion endo handed me a copy of this and highlighted two areas where I fit the bill for other side to come out but the other 3 opinions all were like your opinion, too.

http://jcem.endojournals.org/cgi/content/full/jcem;89/8/3710


Here is a good one for reading:
http://jcem.endojournals.org/cgi/content/full/jcem;89/8/3710

and

http://209.85.165.104/search?q=cache:eHqMJY08AgEJ:www.bentham.org/cctr/sample/cctr1-1/D0003T.pdf+microcarcinoma+papillary&hl=en&gl=us&ct=clnk&cd=1

I am not sure if we ever feel 100% relieved of the worry or not when we leave the other side in?  But if your % of comfort is ok then you have the oppor to change your mind and in the meantime can do an u/s ev. 6 mos.

Do you have nodules on the other side?  I have a small 3mm one.

The ones they found were incidental findings of 4mm and 6mm or something like that if I recall and fully encapsulated with no lymph node involvement.

Cheryl

[flyers1]

I can totally relate to chitchatnlne. I had the left lobe removed due to papillary cancer. They told me that the right side was good and they didn't feel the need to remove healthy tissue. I disagreed. My second opionion doc said that the other side should have been removed while they were in there. Standard procedure is to remove both sides if it is cancerous. However, since my cancer was supposedly very "low" on the cancer scale and I am under age 45, she didn't feel it necessary to put me through the surgery again. She claims that I will be fine and they will do an ultrasound every 6 months and follow me closely. This doesn't give me peace of mind. I wanted that whole thing out. Now I worry constantly about if it traveled to the other side and where else it may be. This is all very new to me. I'm hoping in time that this won't be the only thing that I think about. I am also experiencing problems with the Levoxyl. There are many symptoms and side effects that I have found out the hard way. It was helpful to see that others have had depression problems. I thought that there was something wrong with me. Now I know that this can be an effect of all of this. My suggestion to you would be to write down some of what you are reading in the forums and pose those questions to your doc. I hope this helps you.

[ChitChatNine]

There is a % of partials that need Synthroid bcz other side decided not to function after surgery .. I think it is 20%.  I fall into that category.  I was told "most likely" will "not" need meds after surgery and that all changed about 2weeks post op .. TSH went from 2.0 up to 3.8 with symptoms, etc.  

They started out very slowly with me and kept checking ev. 3 weeks just in case the other side kicked in but as of a month ago it still hasn't begun to work and most likely (do you like that phrase most likely ??) never will.

We started on 25mcgs and increased up to 100 with 100 being too much with anxiety, etc. Ended up on 88mcgs with TSH of 1.7 ... would have liked to be less due to cancer supression .. was as low as 0.667 but side effects could not be tolerated so will have to stay at 1.7 but that is much lower than pre-op normal for me which was 2.8 or so .. so endo and prim doc are happy and me, too.

Cheryl

[ChitChatNine]

I am clueless too on the T3 T4 ...... but wanted to say hello and I read your post.

You actually are lucky he took the whole thing out .. I have to be honest and tell you that living with the other side in comes with a price of the unknown and wondering about decisions, choices, and "what if's" .. that can be all-consuming if I let it .. I have learned to live with it but just this week a close friend of a friend passed away from breast cancer metastisizing to her brain (3yr battle) and it has resurfaced alot of my what if's.

There is MJ CONTROVERSY out there about the pap ca nodules and whether to do TT or partial with the guidelines only be revised in May 2006. The Jury is still out.  So you can read and read and have 6 opinions and they may differ .. it is hard one out there to determine what is best.

Happy New Year,
Cheryl

[Liz94]

When I had my surgery all I had was one little nodule that showed papillary cancer cells yet they took out my entire thyroid gland.  Why do some people get half taken out and then others have to get it all out?  I still haven't talked to my surgeon since my surgery, he fled out of town as soon as my surgery was over for vacation. He told my husband that the nodule was hard, definitely looked like cancer (FNA previously showed the pap cells) and that he felt like "might as well take the whole thing to avoid future surgery."  I really want to talk to him but my appt. isn't till wednesday. I have no idea what is going to happen. Nobody has explained anything to me. I read all this stuff on here about T1, T4 etc. and I have no idea what that is.  I've been on thyroid meds for hypothyroidism for 14 years yet nobody has evern mentioned these numbers to me. I give blood and they fill my prescription.  What kinds of questions should I ask at my post op to get informed?

[utahmomma]

I had to go on Synthroid to suppress my remaining thyroid since I was diagnosed with cancer in the removed, right lobe.  Had the second half yanked out a year later.