Saying hello, new member

Hi @River71, welcome to the group and I hope you find it useful.  I also have one side of my vocal cords which is paralysed, but it was paralysed before surgery from the cancer and is permanent.  I was talking fine before my op but not since and also have problems with my voice now and have to be careful eating and drinking and even just swallowing sometimes can start me off coughing and makes it difficult to catch my breath. I am waiting for an operation to hopefully improve this.  As far as Levothyroxine is concerned, I have been fine on it since the start, but I was on a lower dose prior to cancer as I was hypothyroid for a couple of years before.  I have also just had my second round of RAI treatment and I have been fine with those too.  My neck swelled the first time a little round the thyroid area but it wasn't bad and manageable, and I had a couple of days where my tummy was a bit off after I had got home, I was fine in hospital.  Nothing the second time which was a higher dose, I have felt fine.    My op was TT and neck dissection so a bit different from having a hemi followed by completion but from what I have read of other peoples' experiences they say it was a quick recovery, hope yours is too.  Levothyroxine has to be taken on an empty stomach and you shouldn't eat or drink anything for an hour after taking it.  I usually take mine when I wake up as I do quite frequently and then I can eat/drink as normal by the time I get up.  Also if you are on any Calcium/Vit D supplements you need to leave 4 hours between taking Levothyroxine and those.  Best wishes for tomorrow, hope all goes well x

Hi

I am sorry to hear about your vocal cords, that must be a hard one to come to terms with, I was not expecting any problems with my voice and it has been a shock for me that my voice was so bad but I am hoping only temporarily and I am seeing a speech therapist to help.  I also had a partial then completion and have just come out of hospital yesterday following RAI.

I am still settling into the levothyroxine and after a month on it they have just upped my dose, to suppress my body against making more thyroid cells they keep it high for the first year.  I am very tired and have little energy but I am told that is to be expected after the surgery and RAI

For me the completion surgery was much easier and recovery faster, the actual operation was only half the length of the first, but the first was especially complicated with me as the tumour was attached to my windpipe.

Completion was 28th June and after 3 weeks I was pretty good, RAI was last Friday 28th July and it was not too bad, they gave me a medium dose and three nights in with a scan before I left.  There is not really any pain just some discomfort and a bit of nausea, it's just the whole weirdness of it all, being radio active, I am home now but have restrictions on who I can be near.

I had the results of the scan today and it all looks very promising with no other signs of cancer in my body, the RAI seems to have worked well

For me the worst bit of all of this has been being unprepared, I wish I had asked more questions in the beginning, the first surgery and side effects was a terrible shock and took a long time to get over, and knowing more surgery was to come was terrifying, but the second went really well, I hope your  does too.

I shall watch this thread re the thyroxine with interest, the biggest thing i learnt but had not realised was how long it can take for your body to adjust to a change in dose and you have a lot of residual hormone apparently it's 6-8 weeks before you really know

Which hospital will you have your RAI in? I was in the marsden in Sutton, each hospital does things quite differently

Wishing you all the best, 

Vicky x

Thanks both for taking the time to reply to me, I know how tiring all the treatments etc can be. It's reassuring to talk to people who've been through it all already. 

I hope that tomorrow's op will be quicker, like yours was Daisy  as that half of the thyroid has some nodules but is nowhere near as big as the tumour on the half that was taken out in March. 

I'm sorry to hear Petal that you've got voice issues too. I've asked to be referred to an ENT clinic to see if anything can be done to help like Botox injections or speech therapy. Sometimes I can barely speak at all. My right hand side vocal cords are permanently stuck in the open position. 

I've read a lot online about the negative issues that people can have with Thyroxine so it's  good to hear that things aren't always difficult and that's a good point about our own bodies having a store of it left during the first month. I've heard that it can take a bit of trial and error to find the right dosage. I'll have to be patient! 

Thanks again, both,  hope it'll be OK to pick your brains again! xx

I was put on 125 mg after my op (I had been on 50 mg before due to Hypothyroidism) so I guess I already had some in my system.  Have stayed on that dosage (125 mg) since then and I am suppressed which is what they aim for anyway, so I guess I was just lucky.  I know some people have problems and I just hope that I can stay on the same dosage as it seems to work for me.  I was asked if I wanted to be referred to the Voice Clinic after my op or I could wait, which I opted for, but when it became obvious it wasn't improving I asked to be referred.  Unfortunately the injection which they can do wasn't suitable for me and neither was speech therapy.  What they are proposing is a Right Medialisation Thryoplasty with or withuot arytenoid adduction surgery.  My rh side vocal cord is curved where it should be straight and closes the gap as you use your vocal cords.

From what I'm gathering, the Thyroxine  dosages and even which company makes the tablets can affect people in different ways and there's some trial and error involved. Did you start the higher dose straight after surgery then? I've been clinically hypothyroid since 2017 and have been refused Thyroxine several times by GPs.                                                                .                                                                               After the first op in the spring my TSH has shot up even higher and I'm pretty exhausted all the time. My hope is that eventually, when I get used to Thyroxine my energy levels will improve as I'll be on a steady dose every day rather than the fluctuations I had when relying on my own thyroid hormones alone.

Do you think you'll go ahead with the Thyroplasty op? It's likely that that's what I'll be offered too I think as my vocal cord is paralysed in a position as far from the working one as it can get, unfortunately, so it's  possible that Botox wouldn't be enough to help close the gap.

Yes that is my understanding too regarding Levothyroxine, some of the fillers in some brands affects people negatively.  I do have a rash on my legs some evenings which is incredibly itchy and from what I can remember I had this for ages before my op but the rash has been worse since my op which if related could be due to increased dose.  I have mentioned it to my doctor and he said they could try a different brand but it has put me off reading about other peoples' experiences, as apart from the itching (and I don't know 100% that is from the Levothyroxine) I have been fine.   The increased dosage could have sparked off more rash, more itching, which would make sense.  Anyway for now I am putting up with it, and since my RAI on 13th July it hasn't been as bad for some reason with several nights nothing at all.  I wonder why your GP refused to give you this.  I had a routine blood test when I was called in to see the doctor who told me I was hypothyroid but only mildly, around 3/4 years ago and was put on 50 mg straight away.  I was told it wouldn't harm if I forgot to take the tablet, and should I go on holiday for say a fortnight and forgot to take them with me, it wouldn't harm to leave them either.  Exhaustion is horrible though, I haven't been too bad, I have had moments when I have felt really tired, more than usual both before my op and after, but I am 67 years old and can expect to feel tired.  It was more than just tired though, it was a drained feeling if that makes sense and I would just give in and go to bed.  It didn't happen regularly though.  Hopefully your levels will even out once you have your medication but remember it can take 6 weeks to get into your system fully, so don't expect wonders at first (sorry if I said that before).  They are definitely going ahead with my permission with the Thyroplasty, they did say if things improve meanwhile I can cancel at any time but as far as I know I am still on the list, it was delayed by my Oncologist while they treated me for my lung nodules, which involved needing a lung biopsy and then a further round of RAI when they proved that it was thyroid cells and nothing else.  I must admit I did think from what you said that you sounded to have similar problems to me with your vocal cords but then I am no expert.  Have you experienced any problems with either eating/drinking or just plain swallowing, where you start coughing and then can get your breath.  It is really scary and it has happened to me once prior to my op and 2/3 times since.

Sorry I meant to say SUBCLINICALLY hypothyroid in my message and that's why the GPs refused the trial of Thyroxine, I was just under the boundary to be prescribed meds.

Yes  I know exactly what you mean by feeling drained, I can start to nod off without warning!

That's useful to know that it can take 6 weeks or so to settle when on Thyroxine. It makes sense that it takes time for the body to stabilise especially as thyroid hormones are involved in energy production.

As far as the vocal cords are concerned, yes, coughing is affected and my voice is weak and breathy sounding. I haven't had issues with eating or drinking though, that sounds frightening. I hope the Thyroplasty helps you.

Ok I see, I don't think I was much over the boundary but must have been enough to warrant the medication.

Yes I am breathy too, you start talking and run out of steam, although it isn't as bad as it was a year ago when I had my op, but still not right.  The first time I choked my hubby was in bed, I really thought I wasn't going to be able to breath, I was making the most horrendous noise trying to suck air in (not meaning to it just made the noise as I tried to catch my breath).  About an hour an a half later he got up and asked if I was ok as he had heard me coughing.  I said you are lucky to find me alive!  A good job we have a sense of humour.  I know he has problems sleeping but I could have been a gonner, grrrrrr.

Your husband was obviously very confident that you were OK! I hope he at least made you a cup of tea after that! ;)  It's something we take for granted isn't it that vocal cords work etc.

When I open my mouth now I have no idea what kind of sound will come out! I'm a friendly person and strangers often start chatting to me and then look surprised when a squeak or a growl comes out of my mouth in reply! 

I am the same and chat to everyone and anyone, and sometimes it is hard for people to understand what I am saying but then my hearing isn't great so I don't always hear what they say.  Good job I have a sense of humour too.  My main problem is if I talk too much I start coughing then can't speak at all, so always go around with a bottle of water and some mints with me.