15 days post total thyroidectomy

Hi

Sorry you are feeling so rotten.

I don’t have a lot of experience but my guess is your thyroxine dose isn’t correct. I think it takes about 6-8 weeks for your levels to settle post op. Are you taking your medication first thing in the morning and eating nothing for 30 minutes afterwards. 

Its very difficult but you just need to be patient and let your body recovery.

Good Luck on Wednesday.

Hi Runner25

Thank you so much for taking your time to respond. Yes I’m taking the medication first thing with water and then waiting an hour to eat anything. 
I’ve never experienced a feeling like it, but did wonder if it would be to do with my levels. I’m such an active person so this has probably come as quite a shock to the system. 
Wednesday will be interesting, before surgery I was aware that one side of my thyroid was affected yet after surgery my consultant did tell me that it looked and felt like both sides were affected, I’m sure Wednesday I’ll know for sure. I also wondered whether having a call from the hospital had affected my stress levels a little which has maybe added to what I’m feeling right now. Any calls or letters relating to this issue make me extremely nervous. 

Hope you’re well and thank you again x

Hey Lucy, 

Welcome to the forum though I'm sorry you find yourself here. 

As Runner says, it takes 6 to 8 weeks for your levels to drop or raise. So what you're feeling at the moment is very unlikely to be anything to do with your thyroxine dose I'm afraid. 

Now, what lots of people aren't warned about is the second wave of anaesthetic that happens. The anaesthetic is absorbed by the fat cells in your body, then once those cells are broken down, then the drugs are released and you feel really tired, emotional, achey, sluggish, etc.

It normally hits around 4 weeks after surgery, but if you're a fairly fit and active person then it could be possible that you have broken down your fat cells faster than the norm, so are suffering the effects sooner than most. 

Best advice is to sleep it off, drink lots of water to help flush it through, and let the emotions flow. It's a fairly stressful time, so all emotions are heightened at the moment. Just let them wash over you and apologise where you need to after it's all done.

You're not alone! 

Lass

Xx

Hi Lass,

I certainly wasn’t warned about the second wave, I’ve always been pretty active, I’m a personal trainer so kind of comes with the job. So maybe it is just that, it’s pretty rotten. I’ve upped my fluids and am drinking as much a possible to flush everything out, my sleep is pretty hit and miss has been for a while, I’ve taken to sleeping on the sofa most nights, insomnia hit me months ago when I started to not really feel like me. 

The emotions from the start have come in waves and as you say everything is heightened right now, adding the unknown into this kind of journey escalates it even more so, need to get Wednesday’s appointment out the way and refocus a little. 

Thank you for your support in what can feel like quite a lonely time.

Lucy x

Heya, 

As a personal trainer I'm sure you'll be aware that different people have different metabolisms. So totally possible you've got the anaesthetic blues right now. But yes, it's all pretty rotten as your body and mind adjusts to what's going on.

Regarding sleep, there are a few things to try out to help. 

• No screens for at least an hour before bedtime. The white light will keep your brain alert and active, so phones and TVs off. 
• No caffeine after lunch. 
• A warm drink as you go to bed like a warm malted milk, or honey in milk, warm diluting juice, etc. Just nothing caffinated. Lol
• Meditation or mindfulness exercises right before bed to try and quiet your mind and distract it from the worry and stress.
• A cold rinse in the showrr, quick towel down, then jump into bed. The warming up mechanism of your body makes you sleepy and helps you drift off. 

And of course, those also apply to if you wake in the middle of the night. Don't check your mobile as it'll wake you up further. Mum and I wake in the night and I learnt this trick from her - get up and head to the bathroom with the covers left off the bed. The bed then cools down as do you and middle of the night generally means that the heating is off and the house is chilly. So it's the equivalent of having the cold shower. Getting back into bed, you need to warm yourself and the bed, so it helps you drift off. Oh yeh, and don't turn on a light either, it'll wake you further.

A lack of sleep will also be contributing to the emotional side of things that you're feeling at the moment. So it's a bit of a vicious circle you're in with emotions and stress not letting you sleep, and the lack of sleep making the stress and how you're feeling so much worse. So if you can break the cycle with a bit more sleep, or finding a form of meditation that works for you that helps lessen the stress - then things will suddenly look a whole lot better too.

So fingers crossed things get better for you and sort themselves out. But at least you've found us here to chat to anytime you need or want to. 

Lass

Xx

Hi 

As my name suggests I like running and am now back to running 3-4 times a week and completely back to full strength . I did build it up slowly, but was back exercising within 4 -5 weeks of my operation. The one area I was very cautious about was doing any exercise which put any strain on my neck.

I did have days for the first 6 months where I ran out of energy by the evening and was in bed my 9.00pm. I also learnt that if I did an awful lot one day I was fine the following day until the evening and then I had no energy.

I have leant to listen to my body and also the meaning of patience.

Good Luck on Wednesday 

That’s great to hear, glad you were able to gather your strength back to do something you clearly enjoy. Running isn’t my thing, anything more than a 5k and that’s me out I’m more into weight training, something I hope I can get back into ASAP. Right now I’m having trouble with my breathing so any kind of training is out of the question, just getting my step count up each day seems the sensible way to go for the time being. Which is frustrating as the weight is piling on after not being too well for months now. 

After my follow up appointment today, they’ve seen I have damage to my left vocal chord hence the weird voice still and breathlessness, never will I ever get used to to the camera going up my nose!! Hoping that’s going to be something that rectifies itself. It’s because the left side of my thyroid was quite swollen  and wrapped tightly around my wind pipe, it’ll be something they monitor.

My lab results came back as Papillary, which is what was expected but it’s the tall cell variant so a little more aggressive. I’m booked in for January 20th to have RAI treatment, the higher dose.  

All a little surreal right now, gives me longer to recover and gain back some strength before the next stage of treatment

Hi Lass,

All the above are things I’ve tried, apart from the cool shower, so I’ll attempt that one, anything is worth a shot. I’ve been medicating with relaxants from the Dr’s that don’t always do the trick and aren’t something I can take forever. I use the Calm app on occasions and dependant on how I’m feeling is dependant on how effective it is. I am feeling better in some ways today. The stress of my post surgery follow up is now out the way and there’s a plan going forward. I’m hoping in a few days I loose the surreal feeling again and forward to move forward a little more. 

Thank you so much for your support x

Hi Lucy-M, 

It's been interesting to read this particular forum as I feel like we've had very similar experiences so far, but now I am wondering if you have any advice to offer me. 

I had a full thyroidectomy on the 4th Nov, and tests came back to also show the tall cell variant (still don't fully understand what that means really but i'm not overly concerned at the minute) and now I have Radioiodine booked in for 30th March, it's been delayed so I don't have to take any more time off uni. 

Im guessing you've not long been out of radioiodine now? How did you find it and any tips on how to not stay bored? I'm also conscious of the full body scan afterwards which i'm more concerned about me not staying still for so long! I've read it can take about an hour? Are you still awaiting results from that too?

I was really hoping to get this done before Uni started back in January, but my referral to Oncology slipped through the system shall we say, and wasn't looked at for a month and a half. I didn't complain too much anyway since I spent a lot of that time out the country! I also found the recovery from surgery quite difficult, feeling poor all the time and mentally sad was really difficult, for the first few days after I kept waking up and immediately crying because I felt so down. Although I was on 125mg so after they kicked in everything started to get back to normal. Hope you dosage is all sorted now? 

- HiFly 

Heya HiFly,

I hope you don't mind me popping in and replying to you?!

How to not be bored during Radioiodine - Watch live TV, Watch Netflix - make sure to download content in case you don't have signal in the room, Jigsaws, DVDs, Books, Dye your hair, pamper yourself as you would in a spa - so take in a load of treatments for your hair, face, skin, legs, feet, nails, etc. Just not nail polish, they don't like folks wearing that in hospital. Call people for chats, listen to music, have a wee sing song, games on your laptop, online, or the phone, nap, and so on. The max you should be in for is in on the morning of one day and out at lunchtime on the 3rd day. So it's not that long really. You also need to take 2 showers a day and wash your hair on one of those each day, and you've got your meals to eat, and you'll prob have a daily visit to check your radiation levels.

Take in some sour sweets and maybe some cordial or fizzy water. After you've taken the tablet and the time has passed to allow it to reach the stomach and be absorbed, then start eating the sour sweets to keep your salivary glands running and flushing through. Also, from that moment on aim to drink a minimum of 2 litres of water a day to flush the excess radiation through so you can leave the hospital with no/minimal restrictions.

The full body scan is fine. You just lie there and if there's a radio listen to some music, or have a nap. At my hospital they do a Gamma scan and then an MRI scan after to pair the two together. So it takes a while, but just get the wedge for under your legs and the band to support your arms and you'll be laughing. The results for the scan take a couple of months to come back. So you should get an appointment with your specialist for 2 or 3 months after the RAI to get the results back from it.

Have you been given the details of the LID you need to follow before your RAI? Or does your hospital/consultant not use that anymore?

Glad your dose picked you up and you're feeling more like yourself again!

Lass

xx