Removal of tie rod....err, thyroid. Your experience, if you please.

July 9, 2013 11:51 AM

I've been diagnosed with a multi-noidal non-malignant thyroid. The beast is about 2X normal size = goiter (I divert attention from it with my sparkling personality and feminine loveliness). After 20 years of the goiter with normal hormone levels, it has gone into high-gear with excessive production. I've had the scan and ultrasound, biopsy, blood tests, yada yada. Two wonderful endocrinologists have separately told me, "just get the damned thing out!" I've visited their choice of surgeon and feel confident of his skills. I would appreciate your post-surgery experience: how soon after surgery did you get your replacement hormone? recovery time? any weight gain or loss? how long until you were back to normal? any advice? Thanks very much for your time.
posted by Lornalulu to Health & Fitness (9 answers total)

My dad had his thyroid removed and gained some weight until the levothyroxine was at the right dose for him. Iirc he started taking them right after the surgery, but it might take some time to calibrate.
posted by meijusa at 11:56 AM on July 9, 2013

I had my thyroid out at 8 years old due to cancer. I think I went on synthroid immediately thereafter. Dosage was a real issue, especially through my teenage years (nothing messes with hormones more than puberty), but it's all sorted now.
posted by xingcat at 12:10 PM on July 9, 2013

I had my thyroid out in 2008 due to cancer. I took almost two weeks off of work after surgery, but really, after the first week, I was feeling pretty good. I distinctly remember going to Ikea at some point. The first couple of days were the hardest, mainly because it was hard to sleep because of neck pain, and finding the right way to support my head and neck. Other than that, recovery was pretty easy.

Because I had to have radioactive iodine, I was on a fast acting hormone replacement (Cytomel) for a couple of weeks, then totally off any meds to prepare for radiation (about three weeks IIRC). Those weeks were the only time that felt totally crazy and weird. After the radiation I was put on levothyroxine, and started to feel better within a week or so. The first dose I was on was about half of what I take now, so I was a little draggy the first six weeks. But once I was on a dose closer to where I am now, I felt fine. My dose has been tinkered with since, but it was generally due to blood test results, and not because I was having physical symptoms. I recently had my dose lowered because I was having hyperthyroid symptoms like heart palpitations.
posted by kimdog at 12:29 PM on July 9, 2013

I had my thyroid removed about 15 years ago at the age of 50. Surgery and recovery was so quick and uneventful I barely remember it. Started levothyroxine right away, never noticed any physical or mental changes whatsoever. Once I year I have thyroid levels checked, and my dosage has been adjusted slightly a couple of times - but actually I didn't notice any difference before or after the changes.
posted by Jackson at 12:31 PM on July 9, 2013

My husband's experience is very close to kimdog's above. He was up and around in a day or two of having it removed and was on the short-acting replacement within a few days. He also had the radioactive iodine treatment, so had to discontinue his meds for a few weeks and I remember him falling asleep early during that time, but he was still going to work every day. Once he was on his regular medication, that cleared up within a week or so and he's been stable ever since. I think we're going on 6 years now.
posted by goggie at 12:43 PM on July 9, 2013

My aunt had her thyroid removed over 40 years ago (cancer). She's never been overweight and is otherwise very healthy. As far as I know, she hasn't had much trouble with needing her med level adjusted very often.
posted by monopas at 2:10 PM on July 9, 2013

I had my thyroid removed a few years ago due to cancer. I was given synthroid immediately after surgery, though I understand this is not always the case.

Recovery ... I think I was out of the office for 2 or 3 weeks. I gained a bit of weight after, which was probably due to unrelated life stress.

I've had to adjust a few times sense, but it hasn't been too much of a hassle.
posted by bunderful at 3:31 PM on July 9, 2013

Response by poster: Thanks, all. Putting my neck on the chopping block in August. You repeated pretty much what I've read on the 'net.
posted by Lornalulu at 8:44 AM on July 14, 2013

Response by poster: Follow up: had the surgery 28 days ago. Minimum pain, recovery time was 10 days (I was walking 2 miles a day within 5 days). Worst was getting anesthetic out of my system. I found out today from the Endo that my levels fell to hypo "probably" 14 days afterwards. I would strongly suggest that you insist on a TSH test at that point in time after a thyroidectomy. I did not gain any weight but I follow a strict self-imposed eating program. I am crabby and testy now. Start synthetic in the morning. Gross fact with big ewwww factor: the enlarged thyroid (goiter) had grown down behind my breastbone and into my chest cavity. Any bigger and they would be searching for a surgeon with child-size hands!
posted by Lornalulu at 5:00 PM on October 8, 2013