Help!! Thyroid Surgery Wednesday - Should the Whole Thing Go?

I had thyroid cancer and before surgery I opted to have them take both sides out so I would not have to have surgery a second time. For me it ended up being cancer on both sides and I also ended up having a partial para-thyroidectomy. I am not going to have any more children but my cancer was in 06 and I am doing great and feel great. I would have them perform a totalthyroidectomy.

Thanks
R.
Director
BabyCrazy
www.iambabycrazy.com/R.

Hi T.

I actually had 1/2 of my thyroid taken out about 4 years ago...it was not cancerous. I have not had to take any medication at all since the surgery, but my surgeon told me that if I had the whole thing removed, I would be on thyroid medication the rest of my life. From what I have heard, it can be a little rough until they get the right dose/type of thyroid medicine that works for you if you need it. I had been trying to get pregnant for about 10 years before I had that side removed, and I did finally get pregnant about 1 year after, the doctor didn't know for sure if it was related, but thought that it may have been.

Hope this helps you. Good luck!

C.

I understand your situation. I have an enlarged thyroid being treated with Levothyroxine. My sister on the other hand had thyroid cancer last year removed. Here's her story. She was diagnosed with an enlarged thyroid twice it's size and had a nodule on it. None of her blood work or biopsy's came back with thyroid cancer...none of it. So the insurance only authorized the nodule along with half the thyroid to be removed in Jun 2008 when the results came back positive that the thyroid not the nodule was cancerous she needed to have the rest of her thyroid removed, but having 8 surgeries over 30yrs ago on her neck cause for A LOT of scare tissue and therefore her thyroid surgery and inti bating her while awake was extremely difficult to do. Her Dr. wanted her to wait 6mo her 2nd opinion said wait a year then finally her 3rd opinion Dr.Prinz at Rush downtown Chicago said absolutely not we're getting out of you the end of Sept 2008 (3mo later). The insurance company wouldn't have authorized the entire thyroid to be removed because that would mean she would need to be on medicine the rest of her life and they'd have to pay for it. When the initial work up was done didn't show any signs of cancer (which she evidently had). So I would also contact your insurance to see what they allow or not. I think it sucks that we're at the mercy of them in our healthcare. So now she's been in the clear since then and battling her Synthroid meds getting adjusted to her body. She was never able to have kids due to ovarian cysts and endometriosis. So with that question I cannot help you.

I hope this helps.
A. R.

T.,
I ended up getting 1/2 my thyroid removed, they found cancer and then had to remove the other 1/2 the next week. I was amazed at everything your thyroid does for you...

I also know several people who have had surgery do to inconclusive diagnosis and they did NOT have cancer and were glad they only had the 1/2 removed.

Good luck with the surgery, hopefully you are cancer free!

T.,

Long story short - yes, take the whole thing out. I too had a similar situation. 1/2 was taken out. Then after I was released from the hospital they said they found some cancer cells and had to go back in to take out the other 1/2.

I can't tell you how many people I've talked to that have had problems either with the other 1/2 or with trying to regulate their levels only having 1/2.

It's easier to regulate the hormone when you have NONE than if you have a sometimes functioning 1/2. I've heard tons of stories from people who have been all over the board with their levels because the partially functioning thyroid that's left just isn't consistent.

Do yourself a favor. Get rid of it now. Get a great endocrinologist and listen to your body. Don't take any chances that the part that's left in gets cancer or throws your whole body out of whack.

If you want to talk more, just e-mail me. I went through this back in 2000 and have been GREAT ever since changing Endos. Two healthy kids and a third on the way!

Sara

I had my entire thyroid removed in 2004. I had a goiter for too many years and was told after several tests that it was okay. the largest part of the goiter was growing inside of my chest. It became difficult to swallow or lift my arms above my head. When I finally secured a great surgeon to remove it and sent it to pathogoly, The Dr.'s did determine it was cancerous and could not predict if it went to my limp nodes. Well after that I was diagnosed with breast cancer(left breat) same side they thought the lympnodes might have been compromised. Long story short. It probably is best to remove the entire thyroid. But it is only your choice, please pray and ask God what to do.

Good morning T.. I just had thyroid surgery 2 weeks ago and I had my entire left lobe removed because I had a large mass inside. I have two kids and I wanted to be around to see them grow up so I told the doctor to take it all!! You will be fine. Just make sure you ask questions regarding how your thyroid will function after surgery or if you will need to take the thyroid supplement for the rest of your life and possible side effects. Good Luck

I had my entire thyroid removed 1 1/2 years ago after 3 inconclusive biopsies were done. One was done at Northwestern and the other two at University of Chicago. I couldn't get radioactive scan because I was breastfeeding my son at the time (9 mo) and he refused the bottle. It was a big decision for us because we were told about difficulty conceiving after treatment and I was 37 and was told to be very low risk even though my nodule was big (3cm) and I had a couple other small ones. Both doctors I saw (got second opinion-actually about 10 considering I am a nurse and asked many drs I work with) recommended a total thyroidectomy because of the size and that there were others. I even asked my OB about freezing my eggs and she didn't recommend it because it would mean I would delay surgery. Basically everyone kept telling me I needed to just do it to best take care care of myself and thus the two kids I already have. So I did it and found out it was cancer! They would have had to go back to get it all another time if I only had the one nodule removed!
I had to drink the radioactive iodine for the cancer treatment which gave me no symptoms whatsoever. I'm taking Synthroid now and it has taken a long time to regulate my dose. I had a few weeks where I was dead tired and very hypothyroid. Some people are hard to regulate I was told.
Well amazingly I got pregnant when we were trying NOT to and I wasn't supposed to because of my treatment. I'm still amazed and I'm due next month. It took a year to conceive both of other kids and this was a one time deal when my thyroid levels were at their worst.
I guess to answer your question, I would take it all out just in case and yes you can definitely get pregnant again!

Hi T.,
I work in cytopathology at Northwestern Memorial Hospital and I see alot of thyroid biopsies. The biopsy that you had was it a Fine Needle Aspiration? This is an outpatient procedure that the doctor removes cells from the thyroid with a very fine needle and slides are made in which a pathologist looks at the cells and determines if it is benign or malignant. It sounds like you dont have any other option if it is malignant to have a total thyroidectomy. If it is a benign condition (which most of them are) I dont really see the point in taking out or removing your thyroid - unless it is pretty good size. Most can be just followed.
Not sure about the pregnancy issues. Sorry.

Hi T.,

I understand your concern completely. In May of 2007 I had the right side of my thyroid removed due to several large lumps. The left side had only a microscopic lump, and I was advised to leave it be. I did not have cancer. Luckily enough, the left side of my thyroid has been working for the missing side as well and I have not had to take medication. I simply go in for endocrinology checkups every six months, and am now on a follow up with the surgeon once a year. At one point my left side did start to grow lumps as well, but they have disappeared at this point.

As far as pregnancy, I am due in three weeks and have had no problems with my thyroid levels throughout.

Ultimately, make the decision that you are most comfortable with. Everyone is so different!

Take care, and good luck!

T., my daughter had 8 large noduels on her thyroid she was 27 years old.
They removed her entire thyroid ( which was the right thing to do because of family's history). However, she is now married and trying to conceive a child. She is having some problems with regulating her Synthroid because of the harmones. However, she has great doctors that all work together with each other. My advice to you is: Talk to your Endocronolgist so he can direct you to a specialist they would handle your pregancy. You will be fine!

My mother had 1/2 her thyroid removed many years ago and is fine. She does take synthroid and most likely even with part of the thyroid removed you would too - even if for only awhile to see if the other portion produced enough to compensate - hopefully your doctor discussed this with you. This is where the concerns about pregancy would come in - your body need the thyroid hormone to regulate certain functions.

I have been on synthroid for many years - have had no problems through pregnancies with it. During pregnancy/after giving birth my TSH balance went out of whack a bit each time. My cousin developed an imbalance between children and was told that she shouldn't nurse her second because of her synthroid dose was high - I never heard of that (we live several states apart).

Please call your doctor(s) and discuss your concerns with them. Synthroid has been around many years and is taken by many people with the two most common side effects being you'll find yourself more sensitive to the sun - so up your sunscreen SPF/wear hat/reduce time at peak hours - and possibly dry skin. There are some others much less common and the more holistic alternative has its own hiccups - so make sure your doctor reviews with you.

Hopefully, the doctor can put you at ease about your fears of having it all removed.

M.

I have not had my thyroid removed but a nurse have taken care of many that have. I have met several people that had one lobe of their thyroid removed and ended up having to go back to surgery to have the rest removed. I have actually heard of patients that they could not determine during surgery if it was cancerous and had to wait for pathology. Otherwise they only had on lobe removed, found out it was cancer and had to go back to surgery the next day to remove the rest. If it was me I wouldn't take the risk, I would have a total Thyroidectomy. Either way you decide you will have to have some replacement medication. I have a friend who had children after a total thyroidectomy and other than adjusting medication she had no problems. Good luck!