Complete thyroid removal - Recovery time - Side effects - Levothyroxine- generally unwell - low mood

Hi Beterbex,
I just wanted to reply to say you are not alone and I'm sure some of the more experienced members will be along soon.

I don't know how much help my experience will be but I'm a bit further along than you. I'm four and half months after thyroidectomy, bilateral neck and chest dissection for medullary thyroid cancer and lymph node spread (so no iodine treatment).

So as for some of your questions, as far as recovery from surgery goes, mine has been slow and I'm not without pain still but again like you I do know I'm still heading in the right direction.
I started back at work at 4 months but can only manage part time now.
My consultant changed my thyroxin dose at the 3 month mark because of blood test results and I also didn't feel at all "well", like you. He said it can take a very long time to get the levels correct. Don't think they can be more specific really.
I have dreadful fatigue too but was told it can many reasons, from having a very invasive op, thyroxin levels and also the cancer diagnosis itself carries it's own fatigue.
I was on codeine for a long time and that made me feel sick, so I weaned off that and that's much better. Are you still on painkillers?
As for the mental health side, yes depression and some anxiety but I think getting that diagnosis itself carries it's own mental health aspects of course, and the ongoing post surgery problems we face. I was offered a counsellor which helped me a bit, but for me it was just so I didn't feel I was "burdening" others. I felt people around me just didn't know what to say anymore to be helpful, as they didn't have the answers or solutions either. So for them I've now got to the point when I just say "I'm fine". The closest people to me know the truth.
I also went to a Maggie's centre and the nurse I spoke to there (about literally all aspects!) was absolutely lovely, I found that really helpful.

I've also searched exhaustively through other people's experiences but I'm not sure how much that has helped me mentally. As you say, I've learnt every person's cancer, surgery and recovery is so very different and it left me frustrated with myself when I read how quickly some have recovered (and yes also people's expectations of my recovery) and worried when I read how long some recoveries took. I also felt guilty when I read how much others were suffering!

I got great comfort from my appointments with the surgeon/consultant. He's the only person who really knows your cancer, the op and your recovery stages. So when he says you're on track, that helps alot. He also answered all of my long list of questions!
Oh and having physio is helping alot too.

So, the main way I've managed is to try and take each day as it comes, learning not to feel guilty if I turn people down if I don't feel up to something (that includes work) and celebrating inwardly my little goals and achievements.

Sorry this was so long and I'm not sure it's exactly what you were looking for but anyway, if you have any other questions, please ask x

Hello, I’m 3 weeks post op and feeling very much the same as you. My overall mood is terrible and I’m exhausted all the time. They started me on 125mg of levothyroxine. No bloods have been taken to ensure this will be the correct dosage for me. Have you had your bloods done yet ? 

Thank you, this really is helpful. Fatigue is awful, and I’m unfortunately unable to take codeine but yes take standard painkillers as in paracetamol and ibuprofen as and when, I try and limit it.

MH is related to alot and yes with diagnosis, I have a counsellor who is very good, but feeling like it just isn’t quite hitting the mark yet. You’re spot on with not knowing what to say to people, and feeling like a burden and not sure how they can help as I myself don’t know either. I feel the same and end up kinda saying yeah I’m okay thx. Self care will be ongoing and I’m going to really look at different ways on managing this because I don’t want to spiral. Health, well-being and diet, it’s just alot. My counsellor said look at what you can control and then what you can’t, put things into boxes, not sure if that’s helpful, but all work in progress and defo the words I keep Using each day as it comes.

The guilt is hard isn’t it and I’m sat on the fence about reading other people’s experiences, but it does help with that alone feeling too so bit of a double edged sword, however already you’ve helped, so I’m glad I have.

Setting goals is a good idea, but to myself  and I have a few things to look forward to. Good advice on it’s okay I can’t do everything and need to take pressure off myself.

No not too long at all, thanks for taking the time and has helped and can relate not feeling so alone, guilty and overwhelmed. X

Yep feel all of those, totally relate. I’m on 150mg and have already booked my own TSH blood test at the 6 week marker because that what my Macmillan nurse has said I need to do, who is amazing. I have also had TSH and iron taken last week as bleeding for so long heavily (period) since op so might up my dosage early.

MM are awesome by the way in many different ways so if you haven’t reach out. I have free counselling sessions, gave me financial advice and MM nurse is there when I need her.

Also k9crazy had some great points to share. I’m definitely going to get a big bit of paper/notebook and write a what I can control and can’t and work on that and also maybe have a goals section. Just to break things down because it’s alot! Frustration is a huge word in my life, be it with GP, my health, with myself and so on. There is no quick fix I guess and on going. 

Hi

You are already finding that everyone’s experience is just that little bit different. It is quite normal to be feeling pretty dreadful as you have had a large tumour removed so that is a serious amount of trauma to your neck area. You will have had a general anaesthetic and that takes some time to get out of your system. Each thyroid consultant has their own approach but my consultants approach was to start on a levothyroxine dose related to my body weight which in my case was 175mcg. That reduced quickly to 150mcg. I was advised that it takes 6/8 weeks for your body to adjust to a change in levothyroxine dosage but for the first two years since my RAI treatment my Gp was happy to do blood tests every 2 months. Some people settle to their long term dosage quite quickly but it took me 2 years of small changes before settling on my current dose of 100mcg. I stressed about RAI but found it useful to think of it as a search and destroy mission where RAI will seek out any lingering cancerous tissue and get rid of it once and for all. 
My oncologist’s approach was to suppress the TSH level in my blood results as keeping it on low side reduces chance of any recurrence. I found weight control had work but have tried to accept that if I have low energy days then I need to eat less.  When you head for RAI it is good to acknowledge that the dose used now is much lower than it would have been 20 years ago. Think of the short period of isolation as a break to read or watch tv or do what gives you pleasure. Drinking as much as you are comfortable with, showering at least twice a day and urinating often will flush your system. Please try to be good to yourself and recognise you need recovery time. 

I'm so glad that was of some help and I agree reading experiences is mixed, so you're right maybe it's worth it if we can take some positives away from them. And of course just to know there's others going through this too helps.

Should have said I was started on 100mg and at my 3 month blood test my T3 and T4 were on the high side and my TSH low, so I was reduced to 75mg. I don't really understand the science behind it yet as like you it's all new but I totally trust my consultant as he is a medullary thyroid cancer specialist aswell. I know, as someone else just said, other types of thyroid cancer need a different approach, so that makes it confusing to compare too doesn't it? I'm just hoping at some point it all takes effect and levels out and this damn fatigue eases off.

By the way, I've kept my blood tests with the consultant, not with the GP as I totally lost trust in the GP with over 5 years of misdiagnosis!

Good advice too about dealing with the things you can control first, I need that approach too! X

Thank you. Yes everyone is different for sure. RAI I will be using as some restful me time for sure! Will miss my 3 year old little boy, but I can use as time to reflect and ground myself. And yes, shower a few times a day and drink lots of water, which make me go or the loo lots! Time and patience, also getting used to the new norm. 

Defo take the positives but except there will be some bits that are not so good and got to ride with that sometimes. 

The science is mind blowing and yes let’s see what happens over time and hopefully fatigue will start to ease 

GP worries me massively and was misdiagnosed for years too, even now have been really bad, I was hoping they just take bloods and then it’s in consultants hands, as you say don’t trust them at all! 

Thanks everyone ️been really helpful so far x