Thyroidectomy

[Karlmarxesbeard]

Hi

First time on the forum.

I’m due to have a Thyroidectomy on Tuesday. Not sure what to expect after.

[MissGrace]

I can’t help - but others on here who have had the same experience will be able to advise. I just wanted to say I hope it all goes well and to wish you a speedy recovery. 🤸🏿‍♀️🥛

[Jenna5]

Hi, I had a TT in November 2016. It was absolutely fine, woke up with a sore throat but it’s normal. Stayed in hospital over night then went home. I was given pain meds to take home but I found I didn’t need them after 2 days. I had the little plaster stitches, they slowly started coming off towards the end of the second week. I was surprised how fast recovery was. Hardest part was trying to keep the stitches dry in the shower/bath!

[Greekchick]

Good luck! Please see my replies to others as I have detailed my post TT experience. Hope it helps you. Sending you positive thoughts for tomorrow.

[Sally56]

Hi Karlmarxesbeard!

Like your socialist humour! I had a TT in Nov 2017. No op issues at all. Just rest, so important. Later I bought a silicon patch which I cut to scar size and would put on the scar to minimise the scarring. You cannot see it now at all. Get a good Endo for after. All the best!

[IrisTa]

I had Thyroidectomy about 15 years ago. After the surgery, I talked like Donald Duck for a couple of months, but later everything turned regular. So Good Luck and all the best!

[Girlscout2]

What are you having a thyroidectomy for? Total thyroidectomy? What has your doctor told you it's for? It's a HUGE operation, doctors make it sound like it's taking your tonsils out, but it's more like brain surgery, and should only ever be done as a total last resort.

Have you discussed your replacement regime with your doctor? Who will do your aftercare?

Have you go copies of all your letters and test results? Is the surgeon an endocrine surgoen or an ENT? How many previous operations have they done?

[Karlmarxesbeard in reply to Girlscout2]

Hi it is a full removal due to a 3.5cm lump in the left side and a 5 mm lump in the right. The larger nodule has been biopsied and was deemed unclear as to its nature. The one on the right was too small to biopsy but they seem clear that it will become sinister.

[Girlscout2 in reply to Karlmarxesbeard]

Are they saying hot nodules or cancerous? I had Pap cancer, follicular variant, stage one, you might be interested in this article nytimes.com/2016/04/15/heal... I had a TT, and not trying to scare you but it's ruined my life and if you look up the research, 25% of TT patients NEVER recover, nobody told me those odds before surgery, only after. I would really encourage you to do your homework, once it's gone there is no putting it back in. And to be really clear on what your options for replacement are, last thing you need is to be stuck with no thyroid and under the care of an endo team horribly conservative on hormones. I refused RAI ablation, as by that point I had had enough and I wasn't letting them do anything else to me, I've been fine on that front ever since, but I really, really wish I'd known what I was letting myself in for. For me there was no choice as the nodules really were the least of my troubles as I had very serious graves and hashitoxicosis and was at risk of thyroid storm and had terrible eye disease, but for those who are not sick with autoimmune disease and who aren't at immediate threat, I'd say do everything you can to keep your thyroid. Also, if you do have no option, I'd strongly advise an endo surgeon not an ENT to do it for you, as less risk of damage to vocal chords or parathyroids. Sorry to be blunt, but far, far better to saddle up now and get in charge of your own care than be left high and dry later. This is your health, nothing more important than that, and you say what happens to your body, no one else.

[Karlmarxesbeard in reply to Girlscout2]

Thanks for the information.

It is an endo surgeon doing the procedure and they have been very good with the info flow. I do like to get the full picture so I will ask more questions.

[Girlscout2 in reply to Karlmarxesbeard]

Definitely get more info and ask questions, you don't say where you are, but you can always delay if your cell type isn't aggressive (it sounds to me they don't know, I'd want to know why that is). I'm currently sitting here typing feeling dreadful as the drug I finally found that made me feel better (natural thyroid, Naturethroid, which I can't get prescribed in the UK, but after a mexican stand off with my endo, we agreed I'd buy online, and not talk about and they'd continue to monitor me) was reformulated, and I've slid into hypo and extreme jitters, I'm now on day 2 of a new drug and having to drag myself out of the pit (again). I had a very good endo surgeon who was open minded about T4+T3 combo meds, but synthetics did not suit me - he finally emigrated (he was German) as he said UK care was 'barbaric'. Unfortunately on the NHS it's that or nothing. That's a scary place to be, once your thyroid is out. I honestly felt like I was dying, and they kept telling me that the weight gain, hair loss (I lost all my body hair! And most of it on my head), the five stone weight gain, crushing fatigue, constipation (one poo a week, seriously wouldn't wish that on my worst enemy), shakes, trembling, muscle weakness, water retention, swelling in my hands (had to have all my rings cut off my fingers) was all in my head and I needed a shrink! They also told me I had 'fork in mouth disease' and needed to go on a diet, I was barely eating! i was escorted out of my doctors surgery by a shouting GP telling me 'we have people who are actually SICK here you know!', I've had medical secretaries scream down the phone 'there's nothing wrong with you!'. NOBODY told me any of this before. I implore you to know your facts before you start. My endo surgeon told me in the end 'We don't know all the jobs the thyroid does, so we don't know what really happens when we take it out. Its more like brain surgery than having your tonsils out'. Lots of people do fine, but LOTS of TT patients don't. I was a high earning dynamo before all this, now my life is irrevocably different. Which is why I'd tell anyone that a TT must be a last resort, it must be your absolutely final option before you do it. And once again, apologies, not trying to scare you, just better to know than not know.

[Hay2016]

Had completion thyroidectomy 3yrs ago. Was back running 2 weeks after hemi thyroidectomy, left it a bit longer after completion.

Was in overnight for both for calcium check.

All the best.

[jgelliss]

Don't expect too much from yourself at first . Give yourself enough time to heal . Allow your body to tell you how much you can handle . You will do *GREAT* . Relax and watch funny movies . Laughter is the best medicine .

Best Wishes For A Great Out Come .

[LAHs]

Don't worry too much about it, easy to say. I was terrified but need not have been. See if your doc or surgeon will put you on T3-only medication for about 3 months after your operation. I complain a lot about my first Endo but she did that one thing absolutely right, get T3-only if you can. You will be fit to try any other medications after that, e.g. Levothyroxine or NDT. Levo suits many people, perhaps most, they are the lucky ones. The rest are the slightly more complicated ones, the ones you meet on this site. Good luck tomorrow.

[Brackenholme21]

Had a thyroidectomy Nov 2018 and was nervous about outcome. Actually although unpleasant was not as painful as anticipated. After op felt quite well and adjusted to levithyroxine but that does take some time I found and still in process. Found taking B 12 and vitamin D has helped me personally but on whole glad I had operation . Good luck

[morehead]

The surgery isn't that bad. But not having one is awful... It has been months and I am feeling so bad

[Sophitje]

Hello,

I had a TT 10 days ago and like you was a bit worried. It is completely normal before an op. I have had Graves disease since 2007. In remission (after block n replace treatment) until Jan this year then relapsed and became intolerant to carbimazole. Was put on lithium to control the thyroid until surgery which came quite quickly thankfully (lithium is not the most pleasant and drug to get used to) . The op went really well and I'm now feeling completely fine. In fact much better than when my thyroid was playing up. I'll be back at work on Friday after 2 week's off but would have taken extra time off if not as recommended by surgeon. Make sure you take it very easy for the first few days, then listen to your body and try to do a little bit more every day. The surgeon has told me this type of surgery is not very painful but i didn't know what to believe. I can confirm it's not painful at all. They managed the initial pain very well in hospital and back at home, i only needed a combination of paracetamol and ibuprofen for the first 4 days decreasing the dose every day. Now day 11 after the op, i feel back to myself almost, only some tightness in the neck and scar area a bit tender. The stitches are resolvable and i think only 2 stitches remain for now (hard to see and I'm leaving it well alone). Regarding thyroxin replacement, I'm on 100 mcg at the moment (I weigh 49kg so they calculate the initial dose with regards to weight) and so far so good but i know this could change. Because I wss7on block n replace 10 yrs ago, i know there can be some fine tuning to do and i need to be aware of the signs. I'm due a test at end of April to check levels so that will be 5-6 weeks after op. I was lucky that my parathyroid glands were unaffected and i have not had any calcium issue but this is something to look out for (hypocalcemia). I'm sure the surgeon and their team will have explained all that to you well and anyway they will check your calcium level after op twice and keep you in if too low or send you home with supplements. I hope it will all go very well for you, feel free to get in touch. Take care.

[Karlmarxesbeard in reply to Sophitje]

Thank you that is reassuring. The enlarged noddles and the cancerous lump were really found by accident in January so I haven’t really had time to process the whole thing; I do know that with my family history of being cancer sponges, preventing an outcome is better than waiting to see what develops.

[Sophitje in reply to Karlmarxesbeard]

Yes, it can be helpful and it's natural to look for reassurance on forum but I think at the end of of the day, one must follow the specialists 'advice. They do not perform surgery for the sake of it and know best, so if any cancer suspicion, better than safe than sorry. My French uncle (in his 70s now but had op about 10 yrs ago) had suspicious nodules (not yet cancerous but could have turned to be so) and had a thyroidectomy (total i think), and he's completely recovered. Like me he tolerated the operation very well and has no problem with the levothyrox. Wishing you gd luck for the op and quick recovery.

[Karlmarxesbeard]

Hi this is Karlmarxsbeard

Had my surgery and all has gone well so far.

Just got to sort out balancing the drugs now. Thanks for all the pre-op advice.

[Gem_gems]

Hi Karlmarxbeard

I had my tt the day after you on weds. After 8 years of several relapses due to graves, being intolerant to carbizamol and having too low an uptake for radioiodine I was recommended surgery and after a lot of research, discussions with specialists and time to think I went ahead.

Whilst I know there will be lots of medication adjustments and time to get used to synthetic chemicals for me the mental strain was too much never knowing when I would spike again and suffer debilitating panic attacks heat issues and horrific palpatations...

I have been very surprised at how it is has been so far - although it is sore and uncomfortable no where near what I expected and the surgeon has done an incredibly neat job with my scar...

Will be interested to hear how you get on.

[Cheryl25]

Fatique from blood loss( they cut your throat to remove groitre/thyroid,but,forget that bloodloss leads to low iron levels-hence fatique. You’ll have little or no energy/look pale/will need to eat plenty of iron-inriched foods and orange juice! Good luck with the thyroxine overdoses afterward.

I was overdosed-twice!-until they found the right dosage!