# Question for those who have had a total thyroidectomy



## HDG72 (Jul 12, 2016)

Hello! I have never been hypothyroid and always had good thyroid labs but felt a lump on my right thyroid early this year. Ultrasound showed a large nodule but FNA and Veracyte tests were inconclusive giving me a 40% chance of being cancer. I opted for a partial thyroidectomy in hopes of keeping part of my thyroid. Unfortunately the 2.6 cm nodule tested positive for papillary thyroid cancer so I have a completion thyroidectomy scheduled for August 10th. I had gotten to be overweight the last few years but with low carb dieting was able to lose 60 lbs in about 5 months earlier this year. I am worried that after I have my entire thyroid removed it will mess with my metabolism and I'll gain the weight back. Anyone have that problem after a TT or have any thoughts on the subject? I am 44 btw if that's a factor.


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## joplin1975 (Jul 21, 2011)

I think it really depends on how well you are medicated post-surgery.

I was severely under medicated after surgery (TSH of 121) and gained 27 pounds. Once my meds were in a good place, I lost all of it and am back to normal.

You need to find someone who will not focus on TSH only, but who will test for free t4 and free t3 AND who is open to using t3 meds, if needed. If you find that person, you shouldn't have any problems.


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## Octavia (Aug 1, 2011)

joplin is right. It's critical to get your medication levels right. For some (I was lucky), it's correct right away. For others, it can take time (several months).

I did the partial then completion thyroidectomy five years ago. Before my surgeries, I weighed 125 to 130. I weighed 119 this morning. I watch my carbs and I exercise, but I'm not "obsessive" about it, and I'm able to maintain my weight well.


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## jenny v (May 6, 2012)

I lost over 40 pounds after my total thyroidectomy, but this was after I found a doctor who knew how to dose thyroid meds (i.e., didn't go by TSH). I find that if my Free T3 is low at all, it's virtually impossible for me to lose weight. But when it's in the upper half of the range, it comes off normally with diet and exercise.


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## Lovlkn (Dec 20, 2009)

Dosing by Free T-4 and Free T-3 levels is key in dialing in your replacement dose.

I weigh within 5 lbs of what I went into surgery weighing.


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## HDG72 (Jul 12, 2016)

Thanks so much to everyone for the input! Another question...do you guys think it makes a difference whether you use the brand name Synthroid or generic form? I won't meet with my Endo again until after my surgery but my PCP said my Endo might want me to take the name brand since I won't have any thyroid. I am really hoping he'll be okay with me trying the generic form and see if it works because of the price. Do you guys take the name brand or generic? Thanks again!


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## jenny v (May 6, 2012)

There are actually many types of thyroid medication, both name brand and generic, and different meds work for each of us. It's all individual.


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## Octavia (Aug 1, 2011)

I've taken generic for 5 years (never took name brand) and have had no issues. Your mileage may vary...some people are far more "sensitive" than others and need the greater consistency of the name brand. My system is not that picky.


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## Kmt424 (Jul 20, 2016)

Hi! I'm still fairly new at this, but I'll share how things are going for me thus far 

I had my completion thyroidectomy exactly one week ago today, on July 28th (my first surgery to remove the left side of my thyroid - which had the "suspicious" node, since verified as PTC - was on 6/16).

I stayed overnight in the hospital for monitoring, and was released the next morning. The hospital released me with a script for 112mg of Levothyrine. A colleague who has Hashi's and has taken Synthroid for the past 12 years told me before my second surgery to go with the Synthroid - not a generic brand. She said that her Dr. told her that not all generic meds are consistent from batch to batch. Now, I'm not speaking to how true that is or not, but as one who has generally preferred the original meds as opposed to generic ones, that made some kind of sense to me .

So, I called my Endo's office and asked for the script to be written for Synthroid. Well, she wasn't in so I called my Surgeon and he was more than happy to call in a new script for Synthroid. As I said - it is still early, and I have only been taking the 112mgs of Synthroid for one week, but I feel absolutely normal. The only changes that I have felt since having my thyroid removed have thus far been positives ones...no more hot flashes, muscle/joint aches, brain fog, and a much improved libido 

Turned out that my post surgery path in June found that I also had Hashi's, which had gone undiagnosed for goodness knows how long. My Endo was only testing my TSH levels and kept saying they were perfect. I had some aches/pains, a little weight gain (not a lot), etc. but it never occurred to me until just before my surgery that it was all related. As for the hot flashes? We thought that was due to peri-meno. Since my first surgery, no more hot flashes, aches, what have you. My energy levels this past week have been and so far continue to be, well, normal as far as I can tell. Before my surgeries, I had to fight to drag my butt out of bed for work, regardless of how much sleep I had the night before. Now, I usually wake up on my own feeling rested and refreshed about 5-10 minutes before my "Synthroid" alarm goes off at 5:55am.

So, again, it has only been a week - but this week for me has been very good. I eat a primarily plant based diet, so I don't expect weight to be much of an issue, but again, I've actually lost weight since my first surgery. No surprise there, as I was likely and probably still am carrying those extra pounds picked up over the past few years or so that I attributed to my not being as active, since right around that time my job responsibilities changed and I spend more time sitting at a desk all day.

I can't speak to whether the generic or Sythroid may be best for anyone else, of course, but from where I'm sitting right now I am pretty pleased with my decision to go with the Synthroid over the Levothyrine. Now, I'll need to see how this continues go forward, but so far, so good


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## HDG72 (Jul 12, 2016)

Thanks everyone for posting! Yes Octavia I've never had any problem taking generic of other kinds of medication so I'm hoping I can do well with generic version of Synthroid. The family budget would be much easier on $4 a month for medication as opposed to $40.


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## Lovlkn (Dec 20, 2009)

I've been on generic Unithroid since my TT. The key is to remain with the same manufacturer. If you change then retest after 6 weeks.

I just changed to generic Cytomel after being on brand Cytomel for 8 years and noticed no difference and have labs to prove its equal


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