What lies ahead after a total thyroidectomy?

Hey ob,

Sounds like you needed to get all of that off your chest! Do you feel a little better, just letting it all out?

My lobectomy scar got really infected, and I was really unwell too. So I understand the trepidation before having the second. However, my first was definitely the worst experience, and the second was a complete doddle in comparison. I couldn't believe the difference between how I felt after the second compared to the first.

In regards to the medication, I'm afraid no-one can say how quickly you will adapt to the meds, as everyone is different. However, the doctors are usually very good at managing the levels, and getting you onto the right dose as fast as possible. I'd say that you shouldn't turn into a complete monster, and your kids shouldn't be affected - especially as you're aware of what's going on. You know yourself, and you know when you don't feel right. You will also know, maybe with hindsight, if you've been a bit short tempered as things adjust and you deal with the stress of everything. Which means you'll be able to make it right again.

Not feeling like you're able to stand up in front of a classroom, and feeling like you've lost your confidence are all totally normal when dealing with cancer and all that comes with it. Have you thought about phoning the Macmillan helpline to have a chat with someone? They have some wonderful people who can help with all of those thoughts in your head.

And you've nothing to be sorry for. Not around us. Remember, most of us have been where you are now, so we totally get it. And they say life begins at 40, yours is just going to begin without a thyroid. I'd say that you're juggling everything fairly well at the moment. Remember; you're running a house, you're a mum to 2, you're a wife, you're so many other things, AND you're dealing with cancer. That's a lot to juggle, and from the sounds of things - all your balls are still in the air, soI think you're doing awesome! And whenever you have a wobble, you know we'll be here to help however we can.

Lass

xx

Thank you, Lass! 

I really appreciate you getting back to me so quickly. I've read over my post a few times and it does feel therapeutic to have got it all off my chest. I'm use to being in control... well, trying to be, and I'm finding it difficult to comprehend that I can't control this. I think I will give a nurse a wee call as talking is definitely helping. Thank you again. My mind is racing but I'm going to try to get some sleep now. Didn't get much sleep last night (but did get a pile of ironing done at 2am!)

Goodnight!

Lol. Not a problem! And I'm glad you feel a little bit lighter. Sometimes a vent to someone you know you can't hurt is the best medicine.

And I know all about the being in control, and then not being. It can be scary, but I took control back by trying to learn about what's going on with me, what to expect, and making sure the docs spoke to me like an equal and not some silly girl who knows nothing. Things got a lot better in my head after that.

If you like taking control, perhaps focus on Christmas? Give you, your boys, and your family something fabulous - but mostly you - and the time before the surgery will fly by. Then you'll have an awesome celebration, and suddenly, the op will be done and dusted.

2am chores are the best - no interruptions. Unless you have cats who think that bedtime is overdue..... lol.

Have a nice warm, non-caffeinated, drink and take yourself to bed with a good book and relax.

Here if you need us.

Lass

xx

Hi  

I'd like to address your concerns about life on thyroid medication because that's something a lot of people worry about - many of them completely unnecessarily. Thyroid cancer is still rare - but thyroid illness is extremely common. I read one report that said in Scotland thyroxine is the 3rd or 4th most prescribed tablet. There are many more people taking thyroxine for thyroid problems than taking it - as we do - to replace our lost organ and to minimise the risks of recurrence.

Some will say "I don't want to take medication" - try not to think of it as a drug, it's a synthetic replacement of what your body was already making. Many people wouldn't think that taking vit C for a cold or calcium for their bones was taking a 'drug' - just supplementing what you'd already naturally have in your system. Thyroxine is like that - your body already knows it, recognises it, and knows what to do with it.

Side effects can occur but they are much less common than any internet search would suggest. Nobody goes online to write a post that says "I take thyroxine and I feel great" - that's not the kind of post that gets 200 responses. But a relatively small number of people with problems - generally thyroid disease rather than thyroid cancer - make a LOT of noise and fill the thyroid forums with their many real and many more self-prescribed side effects. Thyroid problems often combine with complicated auto immune issues like Fibromyalgia, ME, stuff like that and sometimes people can't get their GPs to take those conditions seriously, so the patient starts to BLAME the dodgy thyroid for all their ailments. Or, if not the thyroid, they blame the medication and the doctors. The poor old thyroid gets a really bum rap.

I'm not going to tell you that nobody has problems - of course they do and we have people here who have struggled - but I do believe the poor little thyroid is often getting blamed for all manner of problems that are not its fault. I will stick my thyroidless neck out and tell you that there's are far fewer problems than you'd think based on what you read on-line.

The main thing - as I think Lass mentioned earlier - is once you're on it, learn about thyroxine, learn to understand your blood test results and take control of your medication. Don't - as many people do - just settle for a GP telling you twice a year that your results are 'fine' - demand the numbers, learn what they mean, track your results and how different doses make you feel.

I have no idea why thyroxine would turn anybody into the sort of monster that you describe. 

Thanks Barbara! I really appreciate your response. I think I've been reading too many horror stories online- some of which I'm sure are exaggerated! I guess it's all about the individual. Like you say,  not many people are going to say 'I feel great!' I'll just have to take it in my stride, trust my doctors and speak out when I need to. Was just a bit emotional last night! Feel much better today after a good night's sleep! 

Morning Ob78

Firstly I'm glad you've come to the forum, it always makes you feel better when you don't feel on your own. 

There's not really much more I can add to what barbaral and Lass have already said. I was worried about how it would affect life with my two young sons too, I was really scared that I'd have to be a `sideline` dad, and not have enough energy to play with them after a long day at work. The thing is though for me, nothing has changed throughout this whole process, with the exception of taking two tiny tablets each morning. 

You won't turn into a monster or anything like that, and there's no reason once your healed you can't continue as you have been doing.

No matter what happens, we are here for you

Chris

Thanks Chris!

For the last 10 mins I've been purposely reading the success stories. I feel so much better already! Think I was just worried because I already have some mental health issues. However, this diagnosis may be the turning point for me and help me to appreciate what's important in life. From now on I'm going to try to stop worrying about the crap and enjoy the good (no monsters in sight!!)

Thanks again to you, Lass and Barbara for making me see sense!! 

Hi ob78 I had a TTT on the 21St September.  It's taking me a lot longer than expected to recover. I'm a nurse and certainly don't feel ready to go back to work yet. Ive not felt myself since having the surgery. I'm still lethargic and the weight is going up. I've had a thyroxine dose increase 6 weeks after the surgery and I'm on calcium supplements too.

Ive got 6 year old twins but a very supportive family. Even though the recovery has been longer than I thought. I'm still thankful for the cancer being removed. I just wanted to say that it isn't an easy Road but it needs to be done and I'm sure all the hormones will level out eventually.  You said you've got a supportive family which is fantastic. It's always good to talk about how your feeling, and this forum is fantastic for that. You need to listen to your body afterwards and take as long as you need to recover xx

Really glad to hear that you are going to stop worrying about the crap and enjoy the good. That's what we like to hear. Have you read about Sofia Vergara from Modern Family's success story? I was shocked when I found out she had it. Whenever she's on TV I always look for her scar think I've only seen it twice though.

All the best

Chris

I was diagnosed not long after Clare Balding. 

If you want an example of somebody who NEVER seems to slow down after losing their thyroid, you couldn't do much better than her.