In celebration of my five year thyroidectomy anniversary, I am captaining a Relay for Life team. If you have found this site helpful, please consider making a small donation towards my fundraiser, which raises money for the American Cancer Society.
What a wild ride it has been. I’d say overall my quality of life is amazing.
Here is a recap from start to present of my thyroidectomy journey:
- First 6 months after surgery – I have almost no memory of this time. It was like living in a hazy dream. Tired all the time. Tired and hazy.
- Next year – very difficult to explain but essentially I felt like I had to ‘re-learn’ my body. Not in a ‘bad’ way but… things are different.
- My short term memory feels severely impacted and I started using an iPad at work to help log notes – this has totally helped!
- One year anniversary of the thyroidectomy, I completed a triathlon. I felt like a champion.
- Year Two I learned that a low carb/high fat diet now works best for me to lose weight.
- I also realize that not only is my short term memory junk, but facial recognition has devolved. I have a difficult time telling humans apart.
- Year Three and Four I realize that I tire easily – endocrinologist confirms my levels are fine. I’ll chalk this up to age (I am in my late 30s) and lack of thyroid
- Year Four – three different doctors tell me not to go on Birth Control because it will conflict with my thyroid medications. I do not listen to them. I should have listened to them. What a mistake. Ugh.
- Year Five – just found out that my form of thyroid cancer was downgraded and is no longer a ‘cancer’! Follicular Papillary malignant mass does not spread outside the tumor and does not require radioactive iodine. I feel happy and justified that I didn’t go the radioactive iodine route.
Very interesting post. I just had a total in Mid July. In a total Hypothyroid haze as I write this. I got in for my RAI on Wednesday. This has been the lost summer. Ready to start T4 (I guess that’s what it will be). It’s like I am dead inside emotionally. There’s no joy in anything. I’m not complaining about that, it’s just part of the process and I understand the plan is to correct that with the thyroid replacement meds very soon.
Hi Randy,
I understand what you are going through. “Lost Summer” is a great way of putting it. I pretty much lost at least six months. I couldn’t believe what an intense adjustment period it was, for what felt like such a simple surgery.
Please check back in with updates!!!!
Its been one year and one month since my thyroidectomy and I am so glad I have found you! I didnt realize until just now that this is going to take longer to adjust to then a typical surgery. I have blood work done every 3 months and so far each month my dosage of Synthyroid has changed.
Weight has been an issue. I cant loose a damn pound! I exercise, I eat right 95% of the time. I see no change so then I beat myself up….my go to is food so this is NOT helpful!
Any suggestions?
Hi Sparky, how are you?
I’m thyrodeless (surgery) since 2 years now and I still feel crap.
I’ve read your experience and I still don’t understand, is classified as a positive experience? please tell me, as I keep reading about good experiences after thyroid surgery and I don’t understand how that is possible…
Many thanks
Hey there,
I’m super sorry to hear you are still unwell two years later. I recommend you find another endocrinologist. If you aren’t seeing an endocrinologist, find one as soon as possible. Have them change your thyroid hormone levels. I have found the way to handle all this was by having the right medical care.
My doctor is amazing – he says it’s not on what the levels on the chart say, but how the patient FEELS. And he is RIGHT. So don’t let a doctor say ‘oh well the numbers are where they should be at’, and let you keep feeling crummy. :HUGS:
I am a 65 year old female. 16 years ago had 80% of pancreas, spleen and gall bladder removed, it was a long recovery. 6 years ago not wanting to go through another operation I went down the radioactive iodine and oroxine route. One lousy nodule did not read the script so a month ago had to have total thyroidectomy. So tired, so damned tired, needing naps, impatient, and forgetful, the rusty voice I can deal with but who is this woman and can just feel a bit of depression settling in so went googling some more. Thank God I found this page. Thank you all for your honesty and I don’t feel so alone and feel that I can now make it through with not so many tears knowing this stage will end. Being insulin diabetic is not helping but I feel more positive. Thank you.
I am 10 years past a total thyroidectomy. I have yet to feel normal. I see my PCP on a regular basis but each time he checks my numbers he says they are in normal ranges. So I believe I’m going to take one poster’s advice and find an endocrinologist. I appreciate everyone being candid about their battles.
I gained some weight and am not doing so great, since I no longer have a thyroid to auto regulate – I know I gotta go see my endo.
Let’s go see some endocrinologists and check back with each other!! <3
I am one who has nontoxic multi-nodular goiter, discovered by accident during an ultrasound class lab session, 5 large nodules, 2 on the left lobe and 3 on the right and enlarged lobes, FNA yielded indeterminate/atypical of undetermined significance, AFIRMA genetic expression classifier yielded suspicious for the right lobe and benign for the left. Endocrinologist and several surgeons strongly recommended total thyroidectomy but I have put it off, opting for ultrasound monitoring every 6 months with little or no net change to the nodules. I have decided on surgery for next month but now after reading this as well as other reports, I’m more apprehensive. I generally feel pretty good, have good energy, I’m 62, I’ve had only occasional neck discomfort but other than that no real issues with breathing or swallowing.
It looks like most of you have NOT gone back to feeling normal and energetic post-surgery which makes me really scared. I have a lot of things I want to do with my life and am scared that the complications will put a road block. I’m not impressed with any of the experiences reported by the folks on this thread.
Had Hyperthyroidism (GD) for 10 years now, all the time on Carbimazole 10mg at first and now 5mg. Developed heart complications which requires Angiogram which involves shooting enormous amounts of Iodine contrast dye throughout my veins and arteries, which concerns both me and my Endo, especially when a few fish scallops (high iodine contents) can stop me sleeping 2-3 days, so she insists my thyroid must go. I look everywhere on the net for GOOD reviews for thyroidectomy or RAI and could not even find one. So finally I come here hoping to see some good past experiences, and still none the wiser. I mean isnt this supposed to be a forum for good reports of life after Thyroidectomy? Also I have a mate whose wife had it done 4 years ago, and still struggles. If this is the best I can find, then I will keep my Thyroid under any condition.