Decision to have thyroidectomy after atypical cells found in FNA biopsy and post thyroidectomy info

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Hi! I'm a 34 year old female and I just want to share my story with others who might be trying to decide whether or not to have a total thyroiodectomy after getting a thyroid nodule biopsy and they found "atypical" cells and did not get a definite answer one way or the other if it was cancer.  I was unsure of what to do when my endocrinologist suggested I have my whole thyroid removed even they they weren't definitely sure it was cancer (which I initially thought was seriously overreacting).  I came to the internet first trying to find others with symptoms and stories of the aftermath and that helped me feel a little more comfortable with my decision.  I hope this will help others with their decision.  I am not an expert on this in any way.  

I had goiter, several nodules, hyperthyroidism, and Hashimotos.  My endocrinologist monitored my thyroid with blood tests and ultrasounds evey 6 months to a year for about 6 years which started right before I got pregnant with my first child.  I was never put on any medication for it as my levels were never really crazy and I thought I felt ok. (Looking back I did have lots of hyperthyroid symtoms that I thought were a result of being pregnant for 18 out of 26 months and then having two kids under 3- occasional tiredness, irritability, brain fog, weight gain, etc...and then I didn't really notice when this didn't go away even after my son turned 6)   Then one ultrasound of my thryroid found a nodule with a calcium deposit on the left side (possible cancer indicator) and I had a fine needle biopsy (FNA).  They found "atypical cells: which was neither a definite yes or no that there was cancer.  My endocrinologist suggested I remove the whole thyroid gland.  I was like whoa, slow down, that means I'll be on medication for the rest of my life and we don't even know if it really is cancer, and why can't we just take out half?  Here was her reasoning:

1. I had already been having issues with my thyroid and getting repeated ultrasounds for 6 years (that I knew of-I didn't have health insurance in college), and the nodules were getting a tiny bit bigger (fractions of a cm) every time and would eventually choke me even though it might be 10 years down the line.

2. If it was cancer, it was good to catch it early before it got entangled in something they couldn't get it off of or might damage if they tried, or before it spread to other tissues depending on what type it was. 

3. At this point if they got it before it spread I could avoid possible radiation/chemo.

4. Once they got me on the right dosage of Synthroid or some other thyroid meds I would be fine

5. It might help me be able to lose weight easier-I had recently lost a total 40 lbs over a year and a half and it was very slow going. 

6. Why remove all instead of just the half with the suspicious nodule? Eventually the other half will need to come out once the nodules get bigger or I develop cancer in that half and why do I want to do surgery twice and might as well get it done while I'm younger and healthier instead of possibly when I'm older and can't recover as quickly.

She could still sense my uncertainty so she suggested I talk to the surgeon who had done hundreds of these surgeries.  He told me what he would do was take out the left half and while I was still under he would take it to the pathologist to have it looked at and determine if it was cancerous, and if it was, then he would take out the whole thing. He would also inspect the right half to determine if it was worth saving. I believe there was a warning somewhere about other tissues having to be removed but of course I didn't really pay attention to that at the time.

Ultimately, I decided to have the surgery, which ended up being 3-4 hours long (I was told it would be a couple of hours with probably 2 day stay in the hospital after).  Still groggy after the surgery I asked what they took and they ended up removing the whole thyroid and one (out of 4) parathyroid glands - which my surgeon referred to as enlarged and "really nasty".  He said my right lobe was too diseased to be worth keeping in there as I would eventually need it out and it could develop cancer.  It was enlarged and full of nodes and obviously Hasmiotos.  Instead of wasting time then with the pathologist they waited for him to do a complete pathology report after freezing and slicing all of the specimens, which I received about a week after the surgery which would tell me if there was cancer. First couple of days post surgery I was groggy and wasn't very hungry, but didn't have much pain at my incision site, mostly my throat was sore from the tube they put in my throat while I was under.  Then the hypocalcemia set in and I started getting some tetany (like when you get tetanus)-my hands were almost frozen into claws, and I couldn't really open them and my face was feeling numb, and my legs would get kind of numb easily.  Needless to say, there went the 2 day stay.  I was in the hospital for 10 days.  My doctor said that the parathyroid that they removed was enlarged and probably pumping out lots of hormone compared to the other 3 which probably shrank a bit and they slowed down their production due to the enlarged one.  So when the large one was removed, the other 3 were very sluggish and not producing enough parathyroid hormone to keep up my calcium levels.  When they checked my calcuim, I was at a 6.1 and normal was above 9 or something and this was really low and if it continued to get lower my heart could stop.  So they started me on an almost continuous calcium drip and Oscal, rocalcitrol, Magnesium Oxide, stool softener (because all of the calcium pills and drip can seriously back you up), and the first of the rest of my lifetime of Synthroid.  The synthroid is a very tiny pill that you must take early in the morning on an empty stomach.  I would get my blood drawn 3 times a day (6am, 2pm, and 10pm) to monitor my calcium and tons of other stuff.  Also, I was told the calcium drip is hard on the veins, so my IV had to be moved to a different spot 6 times because my vein would "blow".  3 to 4 days post surgery I started to get stomach pain and was nauseous and didn't want to eat or see any food.  I was told this was due to all the calcium irritating my stomach.  Once my calcium levels started to go up and they spread out the number of calcium pills I was taking at at time (4 times a day instead of 3) it got a little better but I still couldn't eat much.  One day post surgery I was able to walk around, but I would be so exhausted after and I slept a lot.  I finally got my pathology report and they did find paillary carcinoma (thyroid cancer!) in the right side-yeah the side I did not have biopsied.  Luckily, it looked like it remained within the margin of the thyroid although it was really close to edge, but it didn't look like it spread.  My surgeon suggested I take a radioactive Iodine pill that would kill any thyroid tissue that remained, and he said there are always some small pieces of thyroid tissue that stay stuck to my larnyx, and blood vessels that they just can't get because they might damage that important stuff.  He said that would be up to my endocrinologist, though.  So finally, I got out of the hospital after 10 days.  I was still extrememly lethargic and sleeping a lot, but I was able to eat a little more.  About 2.5 weeks post surgery, my energy level started gradually increasing, and I got my appetite back.  I am very gradually getting weaned off the calcium pills and have to have a blood test weekly to test my level.  I saw my endocrinologist and she actually DID NOT recommend the radioactive iodine pill.  She said statistically, I had a lower chance of my thyroid cancer recurring than I did of developing a different kind of cancer from the radioactivity in the iodine pill.  She said she'd take her chances with thryoid cancer (very treatable, low mortality rate, especially if caught early) as opposed to developing something like leukemia or some other cancer elsewhere in my body.  Of course, they would continue to monitor my thyroid area with 3 to 4 ultrasounds a year for possibly the next couple of years and hopefully if nothing continues to show up, they would gradually reduce it to once a year.  If the thyroid cancer pops up again, we can always do the radioactive iodine then.  So I am about 3.5 weeks post surgery and my scar is healing nicely (about 5 inches across) and once it fades, it won't hardly be visible.  My energy levels are gradually increasing and I am gradually feeling more normal.  I'm taking one less calcium pill and I am only taking them 3 times a day now.  Overall, I'm glad I had the surgery, especially since they did find the cancer and the diseased parathyroid gland.  While post surgery was a little rough and I thought I was miserable at the time, I'm sure having chemo and radiation if the cancer had spread would have made me much more miserable. 

If you're facing similar decisions and issues I hope this helps!  Good luck and may God Bless you!

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  • Posted

    Hello Thyroid43188:

    I am a Nurse and I have Hashimoto's with a goiter and  3 nodules. I live in the USA. 

    Wow that is some story, I had an ultrasound but the nodules are small and non cancerous - did the biopsy to make sure.

     I heard horror stories of how hard it is to regulate the replacement hormone.  I once saw an Endocrine surgeon for an adrenal growth and he wanted to take out my thyroid instead.  I said NO, because it was not cancerous. 

    If it gets to the stage of choking me, I will have to make that decision.

    I am glad you wrote in and told your story, as this will help others. It does take about 6-8 weeks to build a proper thyroid level.  It is slow.  Thank God they caught your cancer early.  Keep getting better.  XO Shelly

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  • Posted

    You  are one of the lucky ones.   I had a completed thyroidectomy in 2010.   One side had traces of cancer the other side completely healthy as we later found out. I was NOT put on a calcium IV and now suffer with permanent parathyroidism for the rest of my life, having to take calcium on a daily basis.  I commend your doctor for not giving you radition because I did go for treatment based on advise of the encologist and now suffer from side effects.  Looking back I was not a high risk and  radiation was unnessecary in my case.   My health has not been the same since.   I hope by these discussions this will bring awareness so they can make an informed decision because removing a thyroid is a major life changing decision.
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  • Posted

    Hi.

    Thanks for the info on your decision and what followed. Hope you feeling better.

    I had half my thyroid out last July after having an inconclusive biopsy. The right side has gone now but the left side has a benign tumour which could turn or not!!!!!. After surgery the surgeon said he found a small papillary cancer on the right but no need for radiotherapy (much to my relief). On my six week check he said I may need to think about having the left side out, even though my blood tests have come back ok. I went to see him last week  and he asked me if I'd made a decision, I feel I want it done for peace of mind, but like you have read some horror stories!! Weight gain, feeling the cold,tired etc.. A bit scared and its made me think "do I really want to do this"!!! He found cancer in the right side, even though blood test came back ok, didn't find it until he opened me up... Sorry to off load but I got a letter today from the hospital saying he's put me on the waiting list, he has said The other option is that I could just leave it and hope it stays benign.. Decisions decisions...Thanks for listening😊

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  • Posted

    Thank you for posting this. I am going through similar problem and am having difficulty deciding whether or not to go for surgery. You posted this over a year ago. How do you feel now. Did the scar fade and are you having any other side effects.
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    • Posted

      I'm doing ok. After about 6 +months I'm finally on a dose of synthroid that's keeping my levels good. I'm still struggling to keep the calcium up though, and have to take 1500-2000 mg daily (don't quote me,my bottle's downstairs, but I know I have to take 2 at lunch and 2 before bed. If i forget more than one dose I start getting numb on my face and hands. Gained a little weight, but that's my fault for eating crap and not exercising. I'm getting back on the wagon though and the exercising is helping a lot. Scar healed very well and the crease in my neck camouflages it well, awesome surgeon. My hair has thinned a bit, but it's not falling out a lot like it was in the beginning after the surgery. Don't worry, not like huge clumps, but the shower drain had way more than usual. I have to see the endocrinologist every 3-4 months to check levels and in January I go back for an ultrasound to make sure all is clear. Ultimately, there's been ups and downs getting regulated,and I hate taking meds every day-but I'm glad the cancer got taken out before I needed chemo or worse. Hope this helps you.

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    • Posted

      Also remember from my initial post that the calcium is because a parathyroid was taken out. If you just have the thyroid removed you may not have this issue.
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  • Posted

    Hello I have hashimoto and I am 33 I have a goiter and it pushes on my air ways as well as my esophagus and I have been on a soup diet for a month. I have got x Ray ct scan bio opsey and ultra sounds. And I am waiting to meet my ent in two weeks. I think I don't have much of a choice I will have to take out my thryiod and I am scared. I can't live with the goiter and if they only take out half my body will attack the other half because of the hashimoto. I am scared to have the surgery, I am scared of the pain afterwords. And how long and hard it will be to work out the right hormone levels. I live in Canada but once I am healed I am moving to England . Any advice

    Thanks

    Stephanie

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    • Posted

      Hi Stephanie. I do understand your fear and apprehension. I have decided to do the surgery if needed. I will speak to the surgeon in October. I am a Christian and have prayed about the decision and outcome. Because I believe God has my best interests at heart, I'm going to trust Him all the way. I encourage you to do the same. Wishing you well. God bless you.

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    • Posted

      Yes it is scary, but if it's choking you, it's probably for the best. Honestly, the pain after wasnt that bad. I didn't ever fill my pain med rx. the worst part was the pain swallowing from where they had the tube down my throat during the surgery, and that was gone in a few days. I had stomach pains and trouble because of all the calcium they were pumping into me, so of you just get your thyroid out and no parathyroid you may not have that problem. It does take a little while to get regulated but now that your thyroid isn't there to throw things off whenever it wants, it's much easier to find a good dose and stay there. Even though I was off for a bit the biggest problem I had was being tired and losing a little hair. You will probably feel much better once you're regulated without that thyroid messing your body up. I hope this helps. I agree with 1Carmengriffen, ask God to help you. I'll say a prayer for you.

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  • Posted

    Hi. Thanks for sharing your experience. I am in the initial stages having just gotten atypical nodule results and waiting for DNA results of the biopsy. What have you noticed going on with your body since the removal of the thyroid and being on medication?
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    • Posted

      Nothing really bad or debilitating.  If my dosage is off sometimes I seem to get headaches frequently but my endocrinologist gives me blood tests every 3 months or so to check my levels in case an adjustment is needed. Or she will give them to me before if my symptoms are really bothersome.  But I've been on a pretty steady dosage for about 9 months now.  I still have to take at least 1000 mg of calcium daily to keep from getting numbness in hands/lips (because of the parathyroid removal) but the amount I have to take is slowly declining because I guess the remaining parathyroids are catching up again.

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  • Posted

    your letter has helped me come to some decisions based on what my endocrinologist tells me today when i go see him. i'm stressed to the max and afraid as hell but your experience  has calmed me somewhat. 

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    • Posted

      I'm really glad to hear that! I was hoping to help other people in the same situation because I was really scared and didn't know what to do either and just wanted to share in case someone wanted some possible scenarios to help them make an informed decision.  Good luck at your appointment, I hope everything turns out ok smile

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    • Posted

      yes! doc says i'm 'right in the middle' with the results. that is, i have no cancer, and the lumps aren't necessarily benign either. so i may choose to have an operation. i chose ultrasounds every six months to stay on top of it. my doctor is confident with this choice. i think it was meant, yesterday, to come upon your letter . i was looking for info, and all i typed in was 'thyroid operation', and your letter appeared. it calmed me down. so thank you for putting it out there!

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    • Posted

      I had to make an account after reading this.  I am in a similar situation in that my FNA returned with atypical cells and the pathologist recommended a check-up in six months.  My doctor suggested I speak with a general surgeon though first, but after reading all this, FNA every 6 months is far more appealing.
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