Total thyroidectomy (after partial). 50% chance of losing my voice please please help, anyone been here?

So my graves has returned after pregnancy. 15 years ago at age 15ish I had 95% removed and never had a problem since. Now after pregnancy I am hyper with a large goitre. I have a ten month old baby and I have never been away from her at all so I feel RAI is not an option but having seen the surgeon I am devastated that I had no vocal damage the first time but may never talk to my daughter if this goes wrong. Is RAI really an option for people with young children as this would be less of a risk to me? And why such a big risk?! Is 50% cautious? I feel so depressed and no idea where to turn. Anyone had a second op? Thanks xx

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  • I had a partial op then many years later Graves returned, I was told a second op was not possible because the scar tissue makes it more difficult and risky. So I went for RAI, my youngest was about 3 years old at the time and I had 2 older ones.

    The RAI wasn't a problem at all, zip to the hospital, take a tablet and go home again, you don't have to stay in. I only had to restrict close contact with the children for a couple of weeks, so no close up cuddling but otherwise it was all ok, I still did the school run with the girls in the back of the car, I just carried on as normal. The advice will differ between hospitals.

    Obviously a bit more tricky with a young baby as they won't understand why Mum can't pick them up for a cuddle, can you delay treatment until a better time ? I waited until my daughter was old enough to understand what was going on.

    Good luck with whatever you decide.

  • I really would like the RAI but I don't think they will allow me to stay on carbimizole long enough to get her to a point where she would understand. I was given the impression it would be nearer a month before I could even see her. I still don't think it's an option which is so frustrating. I'm having a CT scan in a few weeks to see what the situation is but they seem adamant on booking the operation regardless. I'm convinced I will end up losing my voice and it seems crazy to take the risk of permanent damage above not seeing my baby for a few weeks. Thanks for the info x

  • You need to find out the hospital advice for RAI, a month of not even seeing your baby is ridiculous. As I say I took the tablet, came home and carried on as normal apart from avoiding close contact for a week or so, can't remember the exact time but it was certainly not a month.

  • Thank you. It was totally rubbished and not discussed at all. I've spoken to my GP today and he's advised I have the CT scan and then see endo instead of surgeon to discuss RAI.

    Thanks again.

  • Is there a chance that you are just suffering from Post Partum Hyperthyroidism and that it could settle over the next few months? Have they put you on Carbimazole?

  • I think I am but because I have Graves my endo says my goitre won't go and I'll relapse which seems strange as I went 15 years without relapse and I don't want anymore children/. I've responded to c/zole it took 2 weeks on 10mg and now I'm on a maintenance dose x

  • I fully expect to have lots of "fun" with my thyroid if/when I get pregnant. After only 10 months of giving birth, your body is still not your own, especially if breast feeding. I think that's why they say post partum thyroiditis can occur anytime up to 18 months after giving birth. Personally, if it were me, and it will likely be me in a couple of years (groan!), I would give your body a chance to right itself. Only if it shows no signs of being under control would I consider the more extreme/final methods. But as you are responding so quickly to the carbimazole (2 weeks on a low dose is quick!) I think your endo is sounding a bit rash. Just my own personal opinion though. Others may disagree and thats ok :-)

    With RAI, it should only be a couple days of no prolonged cuddles, if you want to go down that route.

  • Oh no, fingers crossed you don't have this problem! I went to the Dr shortly after I had my little girl and he told me I couldn't possibly be overactive again as I only had 5% left. I was and I didn't have a goitre then, if he'd treated me at that point I doubt I'd need an op. My point is, you are so much more informed/aware than I was! Thank you and RAI wasn't even discussed I was just told up to 4 weeks away from her so it wasn't an option x

  • and you're absolutely right, I am still breastfeeding and the goitre is not a problem at all so I can't understand the hurry. I was back within normal range before I even saw the endo x

  • I'm currently reading a book on iodine supplementation

    Iodine Why You Need It by David Brownstein (2008)

    it says that iodine used to be given to correct both Hyper and Hypo thyroid conditions in the past. You could do your own research in to this perhaps?

    Best wishes for your better health, what ever decision you make.

    OOS

  • Taking Iodine can make things worse

    thyroid.about.com/b/2012/03...

  • Yes - like most things in the world - groups of 'experts' claiming opposite positions. It makes it even harder to know who to believe, and often means going with ones 'gut' as well as the experts.

  • Seems very hit & miss. Any idea what the official advice is from the NHS?

  • Thank you! I am reading up on this.

  • Hi

    Just a few small comments really. They cannot make you decide now. If you are being controlled by carbimazole then ask to stay on it until at least 12 months have passed, as this is the normal route. Plus it may go into remission and they do not know if it will or will not. You may have a nodule so have they fully scanned your neck and goitre? Is your goitre causing breathing problems? If not then what is the hurry?

    Speak to your endos again and state your intentions to wait until your child is older for the RAI. BTW what are your current blood tests? My endo suggested that with RAI you have to sleep apart from your partner and not cuddle your kids or pick them up for up to 6 weeks but to be fair if you had notice you could get a childminder or your family or partner to take leave for the needed time. It would be doable if you want it to work. All the best.

  • Hello thanks for the reply. I'm booked in for a CT scan on the 30th Sept. My endo says I have been well within range within a couple of weeks of carbimizole on a very low 10mg daily dose but he says my thyroid is still toxic so I should have the op asap? Does that make any sense? I wanted to wait a year because by then my daughter would be more independent, I'm still b'fing and if I'm honest, I share a bed with my partner and often my daughter too. She has never been left with anyone so I would need more time but I think if the odds are truly 50% I'd be crazy not to opt for RAI. Thanks again.

  • Surely we are all toxic when hyper and we are often left for months to cope on carbimazole. I do hope you can get more sense from them and that your scan goes well. Please let us all know how you get on.

  • Thank you. Yes you're right. I was left for well over a yr last time but I very nearly died from a thyroid storm and my last op was emergency surgery and because my heart is regularly 140bpm now even on beta blockers at rest I think they are weary to leave it. By the time I had my op it would be over a yr. I've been on carbimizole about 6 months now and undiagnosed for almost 6 before that. Thanks again x

  • The following is an excerpt from an article in Pulse Online by Dr Toft ex President of the BTA. I don't know if it will be helpful:-

    5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?

    The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4

    Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.

    There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.

    But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.

    Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.

    Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.

    *****

    Also if you cursor to the date on this link re pregnancy, it may be helpful. Some of the links within may not work:-

    September 11, 2004

    web.archive.org/web/2010112...

  • This is fantastic info thank you!

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