Hyperthyroid relapse - considering RAI

Hi, this is my first post on here, I have been reading through lots of information as well as some of the posts here and still struggling to know what's best for me to do next...

I found out that my hyperthyroidism had relapsed this week, after being off treatment for a year and completely stable (which makes it harder to accept!) and my endocrinologist suggested it may be a good time to consider the radioactive iodine treatment. I've read a lot about it and basically understand the process but would find it helpful to get some insight about what it's really like. I was told briefly about surgery but get the feeling I am being pushed towards the RAI instead... it further complicates matters that I'm a nurse who works with critically ill children and I know there is a few weeks that you can't have close contact with children. I thought I'd ask if on the off chance anyone else had had this treatment who works in healthcare and could give me an idea of how long you would need off work. I have a feeling it might need to be longer than with any other kind of job.

I hope this isn't too long winded! Has anyone had the surgery and can tell me what the recovery period is like? I'm not sure whether this would be better considering the isolation after RAI!

Thanks for reading!

15 Replies

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  • Welcome to the forum, Mmissa.

    Do you know whether you have Graves disease?

    The RAI dose to ablate your overactive thyroid isn't very high and won't involve hospital quarantine but you will have 21 days restrictions on contact with under 18s and pregnant women. There are also 21 day restrictions on: preparing food for others, using others plates and utensils, travel, dental visits, hairdresser, cinema, pub and restaurant visits. My sister quarantined herself at home for 21 days as she was unwilling to risk close contact with pregnant women travelling to work on public transport and once she arrived at work. Some people become hypthyroid almost immediately but it can take weeks/months for thyroid levels to drop sufficiently for you to be prescribed Levothyroxine. In the meantime you may feel very fatigued.

    It's recommended to take two weeks off work to recover after thyroidectomy. Recovering from surgery isn't usually a problem but it can take several months titrating Levothyroxine before you are optimally dosed.

    __________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thanks for the reply. I don't actually know if I have graves; I will ask at my next appointment - not sure if I've been tested...

    It seems like a pros and cons list might be a good idea!

  • Mmissa, If you have Graves there's less than 50% likelihood of permanent remission. There are pros and cons to surgery or RAI. Thyroidectomy can cause damage or loss of parathyroid glands and there is the possibility of damage to the vocal chords. RAI can make Graves thyroid eye disease worse and can impair salivary glands.

    I had hemilobectomy and completion thyroidectomy and high dose RAI ablatement follwed by low dose RAI whole body scan without any adverse effects.

  • far better to opt for surgury than RAI

  • Do you have experience of either?

  • firstly i used to work for one of the first doctors to give RAI for Graves Hyperthyroid and i spent many years as a co ordinator for TED

    2nd My husband had Graves and was warned RAI is too dangerous in anyone under 40

    3rd Tayside report found that after RAI everyone is underactive within 5 years with surgury its 10 years

    4th RAI can trigger Thyroid Eye Disease and a lot of other problems besides its not as simple as they like to pretend

    if you do a search on this forum using RAI you will read much of others experience

  • I was offered both (RAI or surgery) I chose RAI as the only surgery offered was a full thyroidectomy, whereas RAI aims to only destroy a %'age of your thyroid.

    It's all academic now as I was diagnosed hypo a few weeks ago so recently started on levothyroxine. Just looking forwards to getting back to "normal" (whatever that is). On the +ve side, I now get free prescriptions.

  • As I understand it most people will go hypo with rai anyway? I'm a little worried about going the other way - did you find it was identified quickly? I love my exercise and am struggling at the minute as been advised not to do any until my levels settle.... I would imagine it might also be hard to exercise when hypo with the tiredness?

  • Hi, just make sure you go get a blood test the minute you notice anything. I had bloods taken mid December and my T4 & T3 were both middle of the range. Christmas Eve I started with what I thought was just a cold, but looking back was clearly my thyroid crashing. Had I gone to the clinic then, perhaps my treatment would have been started 4 weeks early and I wouldn't have had to take 2 weeks off work due to feeling like I was dying.

    Once I did have my bloods taken, the decision was pretty swift and I was on levothtroxin as soon as they came back from the lab. I started to improve straight away, but I'm not talking about huge gains,just a few % better each day, I expect it to be several weeks before I'm back to full fitness.

    On the tiredness front, when I was on carbimazole for hyper I dipped and that made me really tired. This time I didn't get any tiredness, perhaps this is due to me taking up road cycling in a big way in the intervening years, maybe it's just one of those things. One thing I've learnt is that these things never seem to be the same each time I've had them.

    My Endo has never told me to lay off the exercise, I've mentioned it many times and at no point has anyone warned me against it, even when I discussed my RAI treatment with the radiology dept. at no point was I told not to exercise, in fact the physicist was keen to discuss it as he was a lapsed rock climber (another of my sports) since his children had been born and perhaps I had sown the seed to encourage him to return to the sport, the only advice I was given was to make sure I didn't spend too long next to the same person in case I dosed them with radiation. I wound up taking several months off mainly due to the arrival of the constant storms we've had battering us for the last few months rather than the RAI.

    As for future fitness now I am diagnosed hypo, there are plenty of athletes out there who are hypo who perform at the top levels of their sport. I think we just have to train smarter to avoid fatigue. This means doing all the things I should do anyway such as lots of sleep and eating clean, plus not pushing myself too far too quickly. we have a family friend who has been hypo for some years and she enjoys exercise, she's in the local running club and seems to be just as capable as the normal people, so I have no real worries about exercise and fatigue as long as the Endocrinologists do their jobs right I should be mostly fine on that front.

  • Hi miss a.

    I was diagnosed April 2013 with Graves/Hyper. I was only in remission for about 4 months when I came off initial meds. Following a change of Endo on my 2nd time around and due to my circumstances with meds and levels. I had the choice of RAI or surgery.

    My Endo felt surgery was more appropriate due to the fact it reared it's ugly head quickly again and said it likely to appear again aftet RAI. I went away to decide.

    After a few weeks and chats with family and friends my hubby and I thought for me the option of surgery. Did want to go through RAI then find I need surgery anyway. Plus didn't like the fact of staying away from people etc.

    Had my surgery nearly 4 weeks ago and I have to say I am really pleased with progress so far. Op was fine and not as bad as I thought. Though I had a peculiar time in recovery - more me than surgery I think. Calcium levels dropped on 2nd test so now taking supplements. Scar is incredible to see the difference in a few weeks. Inside hurts which is understandable considering what they do and I'm not on painkillers.

    I hope you come to the right decision for you. People will give only 1 opinion sometimes but I did think quite a lot about RAI before choosing surgery as both options have to be considered for the right reasons.

    Good luck with decision and which ever you choose it will be successful.

    Please message if u want to discuss further.

    Snow

  • Thanks, I haven't seen as much about people who have had the surgery. My consultant mentioned it briefly but was much more pushy with the rai.

    How long did you need to have off work? It's nice to hear a positive story, I know there can be a few potential complications with the surgery.

  • There are quite a few on here when I was looking into it that have had TT.

    I had 2 weeks off. My job Is office/administration so not too bad to sit at desk. I know of some who had upto 4 weeks. Though working with the young /old/pregnant women or having own young family is something you have to consider strongly no matter what contact.

    I was absolutely scared stiff before hand but now been through it it was a lot better than I expected.

    My calcium levels dropped after but hospital on the ball and was having calcium supplements the next night. I had 2 nights in hosp but that was due to my late arrival on ward first night then 2nd blood test for calcium late 2nd day.

    I was lucky no prob on voice thought calcium low & parathyroid levels low on latest blood results.

    They have to go through so many possible worse scenarios that I did actually cry on hearing them but they hv to do that for all surgeries.

    It's a really scary process I won't lie but I came through the other end and I'm doing ok and for the first time in 3 years all my levels on various full blood count are within range...so much more positive. Just waiting to get calcium etc sorted then thyroid levels tested in a few more weeks. :)

    My endo went through both options carefully with me & thought surgery was best option but left it to me to decide.

    Just take your time on deciding what's best for you.

    Snow

  • They push you towards RAI because it's cheaper! Seriously.

    It has its place, but you need to think very carefully about whether it might be right for you.

  • How much cheaper is RAI than the alternatives?

    I have seen some USA costs which certainly don't make it look less expensive.

  • I was wondering if there would be a cost issue...I really hope the hospital give me advice right for me rather than for the cost of it!

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