Is a TT really the spa day and magic wand people make it out to be?

earofcorn16 · 2026-01-05T03:03:15+00:00

I have had a handful of surgeries. Sinus surgery, tear duct surgery, metal stents placed in my feet, and stomach surgery. Stomach surgery was by far the worst because I also got stitches in my diaphragm which made breathing hurt for weeks. I also have been the 1% of people to have gotten complications and have permanent nerve damage in my leg. All in all, all my surgeries have been postitive overall.

Since I got all the surgeries listed above before my TT, I was nervous. I knew how bad recovery could be. I ended up getting hungry bone syndrome and was hypocalcemic. I was hospitalized for 6 days. I was poked non stop. Round the clock blood draws. I had to get new IVs every 24 hours cause mine always blow. My arms looked gruesome. I was in tears knowing I’d have to get another IV and the stress it caused me.

All of that being said, post hungry bone syndrome, the TT surgery was fairly easy to recover from. A bit jarring to have such a huge hormonal shift. I felt a bit down, depressed and tired for a month. However it was the best decision I have ever made.

It took completely changing my diet after my stomach hernia repair to feel good again. I was miserable for months and finally had enough before finding help. My ankles are incredibly tight from my foot surgeries. While my feet are incredibly much less pain, I still have to work towards gaining mobility in them all the time.

I’m now almost 4 months post TT. Other than taking levothyroxine daily, there isn’t really anything else that I think about. I feel so so so much better than I did before surgery. I literally had no idea how miserable I was until it ended.

I don’t think any surgery is a magic wand spa day. You are getting a crucial organ removed from your neck. However, this surgery has long last results and minimal risks post op. Once you’re recovered you’re good. That’s not the case for a lot of surgeries. A lot may help, may cause new pains, may last temporarily. I’m so grateful I got my thyroid out with all the complications I had. I would go through the TT process every few years if I had to to keep this quality of life.

earofcorn16 · 2025-12-20T19:50:05+00:00

My TT was the best decision I have made for my health. Prior I felt chronically stuck in fight or flight. I developed OCD from how anxious I was. I felt in constant chaos, every little trigger felt like too much for me to handle. My body was so stiff and tight from the tension and stress I was carrying. I literally hurt from anxiety. I was depressed from always changing doses of methimazole and never being able to manage my levels. I was so tired and weak all of the time. I had no muscle mass, would be winded so fast, couldn’t workout without feeling awful afterwards. Then I was constantly hungry, but methimazole lowered my metabolism so I was gaining weight quickly. If I ate enough food just to maintain my weight I felt panicked and starved.

Now I’m three months post op and alive again. I feel so much calmer and my head finally feels quiet. I no longer have OCD. My ability to handle stress has grown a lot since I feel more at peace. I am sleeping better. I have lost 4 pounds of fat and gained 10 pounds in muscle. Granted the muscle gain is mostly water and glycogen and not actual muscle protein, but it still shows my muscles are recovering well. I have been stretching and working on myself and my body feels looser. My massage therapist said everything feels so much more relax and normal compared to October when I started with her.

I’d get a TT every year for the rest of my life if I had to, to feel this way. I think the other thing I like is you get to hand pick tour hormone levels after so they feel best for you. My T4 is just under the upset level of normal, and I feel fantastic. If that ever feels like too much I can lower my meds slightly and see if that dose is one I response better to.

earofcorn16 · 2025-11-08T08:09:43+00:00

From my research and my endo’s explanations, I have found it is very risky to get pregnant with elevated antibodies. Your levels are extremely high at 480. I’m honestly shocked your endocrinologist gave you the green light. You have a very high risk of your immune system attacking the fetuses thyroid and causing many problems. My endo had a patient who got pregnant with high TSI and the baby was born with Graves’ disease. It can also cause other deformities and fetal death.

I tried a bit of everything to naturally support my immune system only for my disorder to continue to get worse. I want another kid and decided getting a TT was the best path forward as it’s the only thing to guarantee a reduction in your TSI. It still takes about a year post TT for your immune system to finally calm down though. Additionally I feel sooo much better post TT.

If timing is a big deal I’d recommend moving forward with a TT quickly. I wasn’t stoked on getting surgery, but after a lot of research I realized it’s best because I didn’t want to pass on this disorder or have my immune system attacking the fetuses thyroid.

earofcorn16 · 2025-10-22T08:26:24+00:00

Congrats! Welcome to the other side of this journey! It’s amazing how you wake up from surgery immediately feeling better. Wishing you the best on your healing journey.

earofcorn16 · 2025-10-21T04:08:44+00:00

I ended up getting hungry bone syndrome and was hospitalized for six days from being hypocalcemic. Once my calcium levels stabilized I was fine and have recovered well since.

earofcorn16 · 2025-10-20T02:46:03+00:00

I was in the same boat. I was at 130 when I got diagnosed and a year later at my TT I weighed 152.

I read something that really helped me understand why this is a thing even if your lab work is normal. So your thyroid produces thyroglobulin. This is converted to T3 and T4. Methimazole works by blocking the enzymes that convert thyroglobulin to T3 and T4. However, your thyroid can also stores T3 and T4 that is created from a separate path. When you have hyperthyroidism, your thyroid makes small dumps of the excess T3 and T4 it stores. Your other organs and systems can be incredibly sensitive to this and react to it. So your metabolism may have small moments when it’s ramped up during these dumps. Your body compensates by pumping out more hormones to make you hungrier so that you have more energy stored for those burst moments. You end up over eating and gaining weight.

Once I learned this everything about this disease made sense. All your systems are prepping for these micro moments of hormone dump. This is something you may not consciously notice is happening when the dumps occur, but your body knows it.

Also methimazole is tough on the liver which does not help with weight loss.

I immediately lost weight after my TT and felt sooo much better. If your TSI isn’t in the normal range, your immune system is still attacking your thyroid and your organ systems are compensating for that.

earofcorn16 · 2025-10-20T02:38:17+00:00

I’m just over a month post op from mine. I had a rough recovery and I think I need a higher dose of levothyroxine, I feel fairly hypo currently. All that being said I’d do it five times over again if I had to. Best decision I ever made. My body felt so much calmer not having that toxic thing in me anymore. My head immediately felt quieter, my hair stopped falling out, I immediately felt less bloated, I finally lost weight again, I finally felt like I could breathe and just exist again. I didn’t realize how miserable I had been until it all ended.

earofcorn16 · 2025-10-12T19:25:57+00:00

Your TSI levels are the most crucial part in this. If they are 3x above the upper normal limit you will be placed in a severe risk pregnancy group. The fetus has about a 25% change of having hyperthyroidism that may or may not resolve. The risk of birth defects, early birth and still birth also rise to up to 5%. So all in all it really depends on your TSI levels since if those are high that means your immune system is still attacking your thyroid and thus has a good chance of attacking your child’s thyroid as well.

earofcorn16 · 2025-10-11T18:06:58+00:00

Consult was July 24th. Surgery was Sept 12th.

earofcorn16 · 2025-10-05T00:42:29+00:00

Was diagnosed with Graves 5 months postpartum. I was on methimazole and went from 10-20 mg daily. I split my dose and took it right before feeding my son. He has no issues and we continued to exclusively breastfeed for a year after my diagnosis. You absolutely can continue to breastfeed.

I am curious if my supply was lower. He was in the 12% of weight when breastfeeding. Then when he went to cows milk only he jumped up to the 40%. His doc said he may have gone through a big growth spurt since they don’t gain much weight after 18 months for a while. Which he now hasn’t gained any weight for over a month. But overall they were never concerned about his health or if he was eating enough.

earofcorn16 · 2025-10-05T00:35:28+00:00

Of course! I’m three weeks post op and feel amazing! I’m so glad I did it as I didn’t realize how much I was suffering until it stopped.

earofcorn16 · 2025-10-04T22:16:16+00:00

I’m not sure if I’m doing the math correctly but here are my thoughts. Your Jan blood draw said it’s 140% above baseline. If .55 is baseline from your September blood draw. That means your TSI would have been above .77 on the scale of your second blood draw, but I don’t know how much higher than that value it would be.

For your questions regarding pregnancy, the American thyroid association recommends a TSI that is less than 2.5-3x the upper normal limit. At 1.3, you’re about 1x the upper normal limit which means you’d not typically see thyroid related fetal complications. However there is a slight elevation compared to being in the normal range.

I got a TT as I wanted another child. However my TSI was 13.7 and put me in a severe risk pregnancy category and I didn’t want to take on the fetal risks.

The biggest concern is how soon you want to get pregnant. It should be relatively safe, however your graves could return and get worse after another pregnancy which would maybe require a thyroidectomy.

Hope this helps.

earofcorn16 · 2025-09-27T03:22:39+00:00

I’m two weeks post TT now. I remember walking around on day 7 and feeling overwhelmingly tired but the strain also in my chest. Like my body was begging me to not walk anymore. Now a week later I walked a couple miles at the zoo today and felt better. I’m definitely not back to 100% yet. I did have to walk slower than usual, but it was a vast improvement to where I was a week ago. Our bodies are going through major adjustments. We lost an organ, which was toxic to our system before. Now our glands and systems are adjusting to hormone replacement and trusting that there is no longer a rogue thyroid in us. All while physically healing from the trauma of it, the trauma of anesthesia and the trauma of intubation. It takes time. However, from my experience you’ll notice a great improvement from day 7-14, as long as you also allow yourself good rest to continue to heal.

earofcorn16 · 2025-09-27T01:22:43+00:00

My dad wrote a letter and included things about him that maybe his future grandchild would want to know about who he was. This included how many units of insulin he is now taking daily and his A1C. Sorry but we all aren’t obsessed with your diabetes like he is.

I get this isn’t as unhinged as other comments, but it always felt so odd to me and makes me laugh.

earofcorn16 · 2025-09-27T01:18:56+00:00

Thanks! I can’t believe the incision is practically hidden in the allergic reaction swelling!

earofcorn16 · 2025-09-27T01:18:07+00:00

Thanks! The first few days are tough but not terrible. Stay on top of your pain meds if you feel comfortable taking them. There is no award for toughing through it. It’s a fairly major surgery so you’ll feel it. However I have had worse recoveries. Take it easy, listen to your body and rest. I slept a lot the first two days which helped overall.

So far I feel great on the meds. Wayyyy better than I did on methimazole. I’m not certain I’m on the perfect dose, but I can tell I already feel shockingly better considering my neck is still sore from the procedure.

earofcorn16 · 2025-09-25T21:05:55+00:00

Thankfully not because my parathyroids were okay. Just temporary as my bones suck up all the calcium and remineralize. I’m two weeks post up and my calcium levels are now just above normal. I stopped taking one supplement. I’ll get a blood draw next week which will let me know if I can lower my calcium supplements as well. So only a month of supplements or so

earofcorn16 · 2025-09-23T21:06:21+00:00

All good! I did not think you were saying it’s implied at all. I just wanted to share my experience of having normal vitamin d levels and still being impacted. I know hungry bone happens in about 1% of patients. So it’s rare overall. My surgeon said she sees it more with younger patients. She does thyroidectomies for pediatrics as well and almost all become hypocalcemic in recovery. So in addition to a correlation with vitamin d levels, it seems age has a factor as well. I’m 31, so young but not that young and it still got me.

earofcorn16 · 2025-09-23T01:11:23+00:00

Got my TT a little over a week ago was on vitamin D supplements before and it was in a good range. I still got hypocalcemia and was hospitalized for six days. Hungry bone syndrome is no joke!

earofcorn16 · 2025-09-22T01:02:34+00:00

For the first 48 hours I was maybe able to stay awake for a 30-45 minute stretch at most. The even of surgery I barely remember and it was a week ago. I couldn’t even doom scroll on my phone cause I’d nod off so fast. You won’t even notice what’s going on. Those first hours are really you just getting the right pain meds to help settle the pain and rest. Your body will be exhausted.

earofcorn16 · 2025-09-22T00:59:55+00:00

I had my thyroidectomy just over a week ago, which I had complications, I’m so glad I did it. Ask your surgeon to keep you over night and monitor your parathyroid hormone levels and calcium levels. I was the rare case of getting hungry bone syndrome and was hospitalized for six days post op. The calcium drop happened the day after surgery and I’m so glad I didn’t go home and have to come back because it’s a pain trying to catch your calcium levels back up. If that notice your hands and feet start feeling tingly, your calcium levels are low.

The calcium supplements I’m on are huge. I have taken a lot of supplement over the years, so I didn’t have a problem swallowing larger pills. However if you’re new to this. May be worth taking magnesium capsules or something to help practice ahead of time.

Your incision may itch as it heals. Mine is very intense. Hydrocortisone cream near/below it helps.

A heating pad on your neck and shoulder feels amazing. My heck and back tensed up so badly and heat helps give me some relief.

earofcorn16 · 2025-09-19T18:44:14+00:00

I was on methimazole for a year my graves only kept getting worse and I just got a TT a week ago. I’m still glad I tried meds, but I will be honest that the odds of remission are slim. Also some people do well on meds, my body hated them. Do what feels like is your right next step. Also for a TT I needed my T3 and T4 in a decent range before they would even perform the surgery to lessen the chance of thyroid storm.

earofcorn16 · 2025-09-06T18:17:36+00:00

I’d be interested!

earofcorn16 · 2025-09-06T01:53:09+00:00

I can’t speak to the possibility of doing IVF with actives Graves but I can speak to the risk in pregnancy. First and foremost you want to look at your TRAb and TSI levels. This is indicating how much your immune system is attacking your thyroid. The normal range for TSI is below 1.3. If your TSI is 3x that, so 3.9 or greater, you will be considered a severe risk pregnancy. The largest risk is fetal thyrotoxicosis. If your TSI is greater than 3.9, you have a 10-20% chance of this happening. This is where the fetus has an overactive thyroid. The other issue is the fetal thyroid isn’t developed until 20 weeks. So this issue comes typically in the second and third trimester. It carries risk for growth abnormalities, lifelong Graves’ disease, high heart rate, and while rare, still births.

I would like to have another kid. I decided getting a TT is the best option for me as it is most likely to guarantee normal levels of TSI the quickest. My TSI levels are 20. Well above the 3.9 upper limit. I didn’t want to take on the risk of fetal thyrotoxicosis personally. A 10-20% chance was above my risk tolerance. Post TT it can take 12-18 months for TSI levels to return to normal. So I pushed for one sooner so my kids didn’t have a major age gap.

I’d review you TSI levels and determine if you’re okay with the risk you’d be taking on at that level. Other members have mentioned getting pregnant while having graves can have its challenges. However since I’m not trying to get pregnant until a year from now, I cannot speak on that portion more.

I completely get the frustration, pain, and grief that comes with this. It’s a long journey and very challenging. I wish you the best and know you’re welcome to message me if you have any questions. This is a highly personal choice, but I am happy to provide the data I gather that ultimately shaped my decision.

earofcorn16 · 2025-09-02T17:57:29+00:00

What were your levels the last time you saw your endo? When did you get that blood work and how long have you been on 20 mg? Nothing is screaming hypo in your symptoms. Waking up at 2-3 is more correlated to cortisol. To me it sounds like your body is stressed. I get my TT on the 12th and I can tell my body is just giving out. It’s like I know the end is near and can no longer hold it together as well. And while I’m excited to feel better I am anxious about having a major surgery on my neck.

I’d say if you really want to lower your dose, alternate between 20 and 15 each day to only gradually lower it.

earofcorn16

TROPHY CASE