Anyone had a total thyroidectomy?

[TripleAlphaProcess]

Hi, just looking for experiences really.

I was diagnosed with Graves’ disease back in May this year, but I was pretty symptomatic for about 18 months before that, but wrote it off to stress (hand tremor, weight loss, sweating, high heart rate etc). I started on a low dose of carbimazole but my levels kept fluctuating and landed me in a&e a couple of times. So now I’m on a much higher dose of carbimazole and I feel awful!! I’m bed bound. The endo thinks thyroid surgery would be a good plan (I have 3 kids and live overseas from family support so radiotherapy isn’t ideal). I’m not too worried about the actual surgery, I just don’t want to feel terrible for ages after and struggle to get the thyroid replacement right. I’m starting a new job in January and it’s going to be taxing, I don’t want to be dealing with palpitations, low calcium etc.
Any stories or advice greatly appreciated. I’m seeing the ENT surgeon this week!

[debska]

Had tt for thyroid cancer last year. Still trying to get my medication right I haven't got my energy levels back yet but ....
I am not bed bound. I am working nearly full time Enjoying life and my family. Feeling like it is getting better.
Recovery from the ops was ok too

[WhyDidIEatThat]

Op, graves can be so grim. In the early days of treatment I couldn’t get up at all sometimes and I had been training for a marathon, a good day was walking a mile or so (but had to stop along the way, catch breath, wait for heart rate to come down etc). It’s much better now but I still feel limited. I’m having the surgery sometime in January after radioactive iodine failed - find life on carbimazole really tough so I’m not always 100% compliant, then obviously thyroid goes mad again. Am actually starting to look forward to becoming hypo, they assure me it will be easier to live with. In the meantime my endo advised me to find out about ME/chronic fatigue and to follow advice for managing that, it’s been helpful and I can recommend it.

[TripleAlphaProcess]

Thank you both. It’s been pretty horrible. I was a runner too, I used to run 20k and now I can’t walk across a room and talk at the same time! My thyroid levels are currently within normal range but I’m still experiencing palpitations and waking up tachycardic. Good to know you are nearly full time debska! Good luck in January WhydidIeatThat, maybe we can be Thyroidectomy buddies 😷

[BlackHillsofDakota]

Not the same thing but I had RAI 18 months ago after being diagnosed with graves. If I had known how awful I would feel after I would have refused. I am still trying to get the Dosage right on my medication and feel 100 times worse Hypo than I did when I was Hyper. I think thyroid issues in general
are totally under estimated in how debilitating they can be.

[WhyDidIEatThat]

Thyroidectomy buddies unite 👍🏻 I’m really squeamish though and hate the thought of the actual operation 😕

Apparently there’s a 2 month lag between levels changing and symptoms, can’t remember why.

Argh BlackHills, is it even worse on the other side?!

[Bourdic]

DH had tt for thyroid cancer 11 years ago. Quick recovery after the actual op and then a few months until got thyroxine dose right which is quite normal I think

[BlackHillsofDakota]

The doctors all assured me that hypo is easier to control, once you're on the tablets is sorted for life. It hasn't been my experience but I do think my consultant is worse than useless and I do think I have been abandoned a bit. I still struggle now though with the extreme tiredness, very low mood, weight gain, cramp, breathlessness etc but hopefully if I can get the dose right it will all stabilise and from what I've read once the dose is right it tends to stay that way.

[KiaraS]

Hi, I'm sorry you are dealing with thyroid issues. It's a familiar subject for me too. So, I was diagnosed with hyper when I was 14 and was allergic to carbimazole so took beta blockers for a couple of years and had almost a total thyroidectomy at 16. They took too much so I went under active immediately and due to the way they introduce thyroxine it took 4-5 months to establish the correct dose. In that time I gained 3 stone and lost 2.5 of it again. My vocal chords were damaged and I had speech therapy. But once that was all dealt with I was 'well'. Annual checks and minor fluctuations. Until I had children and then it went massively awry but that's a different story. So fast forward 23 years and I'm fine. The op and 'aftermath' is distressing BUT your heart is under serious stress right now. You cannot continue like this. It is 'better for you' to be hypo than hyper from a heart perspective. At least with hypo your meds will be regulated to ensure you have enough supplement. Please please have the op if that's what your endocrinologist is recommending. I'm happy to answer any questions you might have. It wasn't a happy time in my life - I went from a teeny size 8 eating chocolate daily to a size 16 and at 16-17 years old that is the most distressing thing imaginable at that age!! BUT I was sorted out quickly and when I met my long term BF in the November I was a size 10 again 7 months post op. I don't tell you this to worry you but to manage expectations. Pre op I had periods of manic and then couldn't get out of bed for a week. Sweating, heart palpitations, exhausted. Immediately post op, weight gain and hair loss (not total of course just thinning) but within 6 months weight regulated, hair re grew, voice sorted and felt healthy and able to live normally and for 21 years now I have lived normally. Good luck to you.

[TripleAlphaProcess]

BlackHills that sounds really tough, when do you see the consultant next? Can you see a different one?

I saw the ENT today. My thyroidectomy is planned for the 20th November, I feel pretty calm about it, I feel absolutely terrible now so hopefully things will improve 🙏

[LaughingLlama]

Hi. I had a hemi-thyroidectomy (half out) last year for cancer. I ended up having the rest out 6 months later. I felt better once the whole thing was gone.
Recovery is quite easy and not too bad. Recovery from my wisdom teeth op was fsr worse. It just takes time to get your levels of meds sorted out afterwards. Once thats sorted all is good!
Good luck x

[TripleAlphaProcess]

Thanks LaughingLlama! I'm on the countdown to surgery now. I've just started taking Lugol's iodine to shut my thyroid down.

I've been absolutely wiped out by a virus over the last few weeks, to the point where I couldn't even take a shower without getting completely worn out. It's not an ideal way to head into a surgery but I'm sure the graves' disease is responsible. Hopefully I can start moving on with my life afterwards.

[eeanne]

I had a hemi-thyroidectomy followed by a completion and radioactive ablation due to cancer. The recovery actually wasn't so bad. But it took almost 18 months to get the thyroxine dose correct and that was a bit of a challenge. 5 years on now and I'm feeling great, have had two children (well pregnant with the second now) and generally a healthy person! Good luck and don't worry.

[pizzicato]

Hi. I am 7 years post TT for thyroid cancer. Surgery was fine and it's a quick recovery. As soon as your stitches/clips are out start massaging Bio Oil into the scar to break up scar tissue and help the scar to fade.It will take a while to get the thyroxine dosage right.I feel fine now and just get on with life. It's easier to supplement throxine then to reduce too high thyroid hormone levels.Buy a couple of floaty scarves to tie loosely round your neck when you go out in the beginning.

[RaindropsAndSparkles]

Yes. Graves in 1991. In hindsight had been going on a while. My levels were very high and the impact on my heart caused my legs to swell which took me to the Dr. I found the shock of finding out I wasn't invincible was worse than the illness.

I was engaged and we wanted to start a family so I wanted everything stabilised asap. Had about 4/5 months carbimazole, initially with propranolol. I never ever felt I'll but could see the remit of symptoms once I knew.

Had a subtotal thyroidectomy. Was fine after a fortnight and back at work three weeks later. Started on 50 mcg thyroxune which was increased to 100mcg after 6 weeks.

Looking back I suspect some of my miscarriages were related to the thyroid but I had two healthy DC within 7 years of the surgery.

I have an annual blood test. My DC are grown, am post menopause with a little middle aged spread (because I love food). I work full time and have always felt fine.

My only issue is osteoporosis which could link back to the undiagnosed years. But That's being managed with modern drugs.

On the whole I run on 4 cylinders and always have.

Good luck op.

[WhyDidIEatThat]

That’s really encouraging 🙂 good luck for next week OP 💐

Does anyone know how low your antibody levels (TRAb are my worst ones) have to be before surgery or is it not important as long as thyroid itself is behaving? For some reason mine aren’t coming down even though everything v low (practically hypo) in the range (except TSH still not up enough, stuck in some negative feedback loop)

[TripleAlphaProcess]

Thanks everyone, this has been very helpful and reassuring. I've been really nervous off and on but I feel quite calm today, I can't keep my thyroid, it's just too angry. My TSH went up from 0.0007 to 0.01 and my T3 shot up as a result!!

Why My antibody levels didn't feature in the decision to have surgery (they go up each time they're checked), I just needed to have my T4 and T3 within the normal range. Because my TSH is still too low the surgeon put me on Lugol's iodine 10 days before the surgery to beat my thyroid into submission (to stop it from dumping hormones during the operation). I actually felt quite well after 6 days of iodine, but I'm on day 10 now and I feel crappy so I hope my levels are on the low side.

Raindrops I was diagnosed with osteopenia shortly after I got the Graves' disease diagnosis. I've been taking calcium, when I'm well enough I hope that getting back into running will help. What meds are you taking?

This time tomorrow I'll be coming round from the operation. I'll let you know who it goes Why

[HappyCamperZZZ]

Triple - hope it went well for you yesterday. Please keep us posted. I am having half my thyroid removed tomorrow - maybe once we're back on our feet we can compare recovery notes !

[WhyDidIEatThat]

Thinking of you Triple and good luck Happy 💐 (I have exactly same thing, to have enough TSH >>> horribly too much T3) they just decided to do more nuclear scans though in case have developed some ‘nodular disease’ alongside the Graves we already did all that a couple of years ago tho

[TripleAlphaProcess]

Hi all, just checking in. I'm day 7 post op now and felt human enough to wash and dry my hair this morning! Small steps...

I was pretty sore immediately after the surgery, mainly from the trach tube rather than the actual surgery, it must have been a big one! I spent 2 nights in hospital and have been at home since Wednesday taking it very easy. The pain has settled to the point where I am managing on paracetamol a couple of times a day, finding a comfortable sleeping position has been a bit awkward though! My neck is quite bruised but it's starting to go down. My voice was fine immediately afterwards, my calcium levels have also been good since the op so I have dropped back to one supplement a day over the weekend.

They started me on 75mcg of eltroxin the day after the op, it doesn't seem much but I only weigh 47kg at the moment (thanks Graves' disease). I'm having a thyroid blood work up 4 weeks post surgery to see how that is going. It's probably too early for me to start to feel hypothyroid, so it's just a case of seeing how the next few weeks go.

Emotionally I have been a bit up and down, but that is to be expected I think. I'm trying not to google things because the internet is skewed towards horror stories, every time I google I feel pretty nutty afterwards. My mum is here to help with the kids (I live overseas) and my husband took the week off work, having people around has been really important.

Happy let us know how you are doing.

[WhyDidIEatThat]

💐 thanks for update, really hope you feel fully well soon - I’m so nervous about the surgery itself and being hypo it’s incredibly helpful to hear about it from a real person actually surviving it!

[TripleAlphaProcess]

Just another update, I’m 3 weeks post op now. The actual surgery has been fine, no complications, all healed up and I’ve got a full range of movement in my neck now. I definitely feel hypo, it’s not as scary as being hyper, but I’ve pretty much ground to a halt. It’s lucky I’m off work for a while. I’m having a blood test in a week and can hopefully increase the dose of thyroxine afterwards.

[WhyDidIEatThat]

Good to hear from you, sounds like it’s going okay so far? 💐

[Ekphrasis]

Hi op, sorry you've had to have the op. My thyroid packed up of its own accord 20 years ago when I was 20.

Could I suggest you join/ get in touch with the British thyroid foundation (they're always looking for people to run the GNR btw, a possible future goal? give your self time though!) but they're a great source of help.

Also, get the BMA family dr series on thyroid disorders which has a good chapter on graves but then also hypothyroidism. Thyroxine can be affected by quite a lot of medications and things like calcium and iron tablets so do read the leaflet carefully (through your brain fog!).

I hope you feel better soon.

[WhyDidIEatThat]

How are you feeling Triple? Any of the Grave’s symptoms improved yet? 💐

[TripleAlphaProcess]

I’m doing quite a bit better. The palpitations, tremors and anxiety have finally settled, it took about 4 weeks post op though and I would say it briefly got worse before it got better. My bloods last week showed I am a bit hypo, so my dose of thyroxine has been increased and I feel a lot more human already. My Graves’ antibodies dropped below diagnostic levels within a month of the surgery which really surprised the surgeon, apparently it normally takes longer. So technically I haven’t got Graves’ disease anymore!! My resting heart rate is 65 and I’m not taking beta blockers for the first time since May.

How are you feeling at the moment WhyDidIEatThat?