Total Thyroidectomy

I have now had the operation to remove my thyroid gland, I have had a multi-nodular goiter for over 17 years with hypothyroidism, also gained 70 pounds in weight, could never get a doctor to take things seriously until a new doctor joined the practice, within 6 weeks I was seen by a surgeon and recommended TT. Just as well as one of the nodules was cancer. I am left now with calcium problems, a very low voice with no range or strength, vocal chords were partially paralysed although this was not caused by the surgery so the surgeon assures me - he thinks it may be a virus. I still may have to have radiotherapy, but am feeling better. I have managed to lose about 14 pounds but at only 10 ounces a week if that sometime nothing even though on a very strict low carb diet. I have to take 3 x 500mg calcium and one One-Alpha capsule a day plus 3 x Liothronine 20mcg per day. Not too sure why this is as surgeon has not explained things too well. Still not finding weight loss very easy in spite of no real appetite and low carb diet. Hope I will know more next week.

31 Replies

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  • Hi Salty

    That's a long time, I'm glad you are feeling better, and well done for losing weight!

    I'm guessing they couldn't save your parathyroids as they've given you calcium & One-Alpha - had to look that PIL up -

    One-Alpha® belongs to a group of medicines called vitamin D analogues. It is a type of vitamin D. Vitamin D controls the levels of two substances in your body. These substances are called calcium and phosphate. Your body needs both of these substances for healthy bones and teeth.

    At least you are on T3 rather than just T4. Not that I would ever go against what your surgeon says, but mine warned me of voice problems and jokingly said I hope you're not a singer (I had a partialT, singing seems to yodel, still can't shout - just as well!). I suggest you make a list of questions to ask when you go back for your checkup. All the best Jane :D x

  • Thank you Jane that has cleared up a bit more confusion, my husband and the dogs are glad I can't shout anymore! I have started a list of questions, I have also made a chart of daily food. So hope I can get some sensible answers. This is such a helpful website am grateful for the encouragement - Sally XXX

  • I would like to be so bold as to say, if you have voice problems after a thyroidectomy it is unlikely to be caused by a virus, any more than hypothyroid symptoms are a somatoform disorder! It may be that there will be some recovery in time, it's early days yet.

    I WAS a singer, not professionally but I was a music teacher. There was no warning about my voice, otherwise I would have gone for the RAI instead. Now I can hardly even croak in tune, had to give up teaching anyway (long story) so had to do office work instead for the rest of my working life.

    It seems your post-op treatment is quite good, it's worth noting that if you have had surgery for cancerous nodules then your TSH has to be suppressed until is is undetectable, according to DR Toft. I mention this now because at some stage you are likely to be discharged into the care of your GP and he could start testing your TSH and tell you it's too low, and mess about with your T3 (or as in my case, T4). I fell victim to that, so forewarned is forearmed!

    It's good to hear you are feeling better, you have made a good start with the weight loss, the T3 I think has an advantage over Levo in that respect. I wish you well - Marie XXX

  • So sorry to read about your plight, I too had a TT 3 years ago and gained excessive amounts of weight. I am on 150mg of Levothyroxine daily and have successfully lost 3 stones in weight after the help of a national weekly slimming group SW. My consultant at the slimming club lost 5 stones after similar surgery and frustration with the medical profession. It can be done. Please give it a go.

    Regards.

  • Again Karen thank you for the encouragement, I will have a go, although I did join WW's when this first started (1993) and only lost 2 - 3 ounces a week sometimes put it on and was accused of cheating, did not think it was worth £4 a week for that. Bought a book of Low carb vegetarian diet 3 months ago, and that seems to have worked better. But will persevere and let you all know. XX Sal

  • Please do Sal. Goog luck. xx

  • Hi Karen, I too am part of SW - something that was working well before my TT (non-cancerous) 2 years ago. the things i used to do with SW don't seem to have the same effect. Did you have to tweek the plan at all and are you a red/green or EE girl. Thanks for your help.

  • Thank you so much Marie - that is comforting I am not a singer but I love to sing but only have 4 notes of an octave now - not many songs with 4 notes, I appreciate the other information as I did not fully understand why I was on T3 but you have clarified that for me. Sorry about the office work i do accounts and counting lowers my blood pressure (I found that out while on the timed BP in hospital) The calcium is dissolved in water but to my horror has Aspartame in it (a substance I have tried to avoid for years) Since I have been on the T3 my weight has stayed static which is a bit disheartening but I will persevere and am grateful for the help from the kind people on this site. I hope I will be able to do the same for others - Sally XX and a hug

  • You are on liothyronine because you will be going to have radio iodine therapy, you will only be off that for 2 weeks prior to the treatment, with throxine you need to come off it for 4 weeks. Also my voice was terrible after my first surgery but fine after the second, I was worried my go assured me it was most likely brusing, he was right it came back in time, I had a slight cold when I had it done which I don't think helped.

  • Thanks for that - you guys are really great, it helps to know I am not alone and also that it may improve. Really good to have your support XXX

  • I too had a TT and had laryngeal nerve palsy following with total loss of voice for some several weeks. I have been seeing an ENT surgeon who specialises in vocal chord problems and had speech therapy with voice improvement. Both said that they have seen voice recovery after 18 months to 2 years though in most cases it is much sooner. Surgeon also said that hypothyroidism causes the chords to swell which also affects voice and should improve as become euthyroid.

  • Thank you it is so good to have more information - I had been hypothyroid for 17 years but I did not know that although my voice had deepened, hope your voice improves soon XX

  • I had a TT exactly one year ago which left me unable to sing too. I didn't realise just how much I did sing. Now my singing (if that's what you would call it) is kept to just singing in the car when I am alone ! I had a huge goitre and my surgeon did explain I may have no voice at all so I am grateful for what I have .

  • If you love to sing then it is a real trial, I think I will try practicing when I walk the dogs over the fields, it may frighten the birds but as you say better when no-one can hear and the dogs are very forgiving. Sally xx

  • This is all very interesting - I chose not to have a TT yet (want to do things naturally where possible) and I still have all the symptoms you are describing - in other words, a vocal cord palsy, no voice and I also was a singer, breathlessness and all the things I wanted to avoid by having a TT - so I feel that should I now have the op, not sure how the voice issue will ever be sorted, feeling very down about the whole thing! Not sure if anyone has any similar experience? I also was a singer!!

  • Oh poor Angel that is so unfair, I did read some other comments (not on here) and one singer discussed with the surgeon and got very careful treatment, so that may be an option for you,I did manage to try a tune yesterday and got one note higher but I am now a very low alto. I hope you manage to find some expert help soon and get some results SallyXX

  • Aww thank you, I need all the encouragement i can get! If anyone could recommend a really good surgeon in the northwest then please let me know. It is very difficult to find someone who really really cares. Anna

  • Travel to Plymouth !! My consultant is a saint.

  • I'm two years post op from my TT and although after the first op my voice was normal, following the removal of the second side, I now have a lower voice, cannot sing or shout and have no power to my voice at all. I work with the elderly and it is so frustrating having to try and shout all the time!

    I am off to see a Speech Therapist at the end of January and I am praying they will give me some exercises to help strengthen my voice. I was originally told it could take up to a year, then when the year passed, it was then up to two years, so feel as tho I have been fobbed off to some extent. My ENT consultant has checked my vocal chords and they are apparently working fine, however he thinks I may have slight nerve paralysis on one side, so whether that is permanent or not, I have no idea.

    I really miss singling along to the radio and although Ive tried doing it when no one is around, the noise I make isnt pleasant and I get so frustrated with myself lol

  • Reading other peoples experiences I think I am being a bit too impatient, it is only 5 weeks since my op. I know what you mean about the shouting - my man is getting on and hearing is not as good so keep having to say things twice or more not easy when you are straining the vocals anyway, hope things improve for you in time.

  • Hi Salty6. I'm very sorry to hear of your poor treatment and all those years of worry. I hope you will soon feel better and hope my story will encourage you.

    I had a TT in 2008, as I had suspicious nodules. I was unbelievably lucky, cos my surgeon was hugely talented and very caring. I actually cried last year when he signed me off !! He warned me that TT would cause hoarseness, as my vocal chords would "go on strike". He was very concerned for me, as my main hobby is singing in a choir, warning that my parathyroid glands might be damaged or destroyed, causing permanent damage to my voice. He said an opera singer haing a TT would not be able to work again. I did lose my parathyroid glands and became severely hypocalcaemic while in hospital. I had to be put on a drip. I was prescribed Alfacalcidol on discharge, but it was missing from the large pack of medcines and I was very poorly until this was discovered from blood tests. I wasn't able to sing properly for a few months, but after that my voice returned to normal. I'm now very stable on 1.5 Alfacalcidol and 150 of Levothyroxine. If you feel really poorly, go back to the hospital - I did - and that's how they discovered that my calcium meds had been missed out. You shouln't feel ill any more - just a bit sore around the scar. Btw,. my scar is really faint and I'm 62 ! good luck !

  • Sounds like you have been really lucky!!! Plymouth is just that bit too far though, thanks for the reference!

  • Hi Lynleehane - thank you for your words, I have always been concerned with the thyroid balance due to the weight gain and difficulty losing it, I eat very carefully and don't drink or smoke was fairly active but always tired but the TSH levels made my doctor keep changing the levothyroxine. I was fortunate that the parathyroid problem was noticed immediately so I was on the ghastly calcium medication, I am hoping that they were not all removed or permanently damaged just a bit traumatized, as I don't get the tingling even when I miss a dose. I see the surgeon tomorrow so should find out more then. Thank you for the encouragement and its good to know the scar should improve its a bit lumpy at the moment but I have made up some essential oils for post op scarring and massage this gently every night. by for now x

  • Latest update, I saw the surgeon yesterday he admitted that my vocal cords were probably damaged during the TT procedure he called it vocal palsy (I think), this is why I run out of breath halfway through a sentence cant raise my voice so I will have to brush up on sign language. I have to have radioactive iodine treatment, not looking forward to that but reading about it on the Butterfly trust it seems to be the best course to take now. So thank you all for your supporting words over the last few days I am very grateful and I hope you all keep going with the troublesome thyroid medication. One thing I am glad about is the GP is not allowed to mess about with my medication from now on, the surgeon was very definite about that, in fact he suggested I complain but I have changed doctors instead, not the complaining type (too cowardly) take care all and thanks again Salty6

  • Hi Sall, we do avoid complaining and general hassle don't we?

    Just checking in on you and hope all goes well, please keep us updated. Jane :D x

  • a recent post of interest?

    thyroiduk.healthunlocked.co...

  • Sorry did not reply sooner have been in for radioactive iodine treatment, took longer than it should as the TSH was less than 2 even after 3 week low iodine diet and 2 weeks no medication - not sure what went wrong there, I hope to find out when I see the oncologist 6th June. I try to sing scales when I walk my dogs round the fields they dont seem to mind and only birds to hear that is no competition for them as I sound like the bear in my picture but I can now get 2 more notes after a low octave, so will keep practicing.

  • hi , i had half a goiter removed in 2006 and it was papillary cancer so had 2nd op week later. i was starved of anything edible or to drink that contained even a trace of iodin as 6weeks after 2hd op i had radioactive iodine cancer treatment. im on 250mg of levothyroxine now and have had a few scares but all in remission still. as for your voice...i am a singer so surgery was scary and i to had a bad voice to talk especialy after 2nd op. i was on complete voice rest and had to write on paper much to the giggles of my family and our dogs lol. then luckily enough i new breathing exercises for singin so slowly got my voice back. i saw a speech therapist to which might be good for you to see. the golden rule is...DRINK PLENTY OF WATER TO KEEP YOUR THROAT MOIST....if there are any questions you have or anything i can help with please let me know.......hugs trish

  • Thank you trish, that is such a help, I am drinking mineral water 3-4 pints a day I don't know the breathing exercises for singing but did learn some to help with hyperventilation a few years ago that is slow intake to 7 and out to 11 making sure it goes from the diaphragm, no-one said I should try to rest my voice - should I? My dogs say they cant read and they go deaf when I tell them off anyway. thank you again double hug sal

  • I had my 1st Thyroid op in 1982 they removed my right one. It was all ok , no medication needed ever! Now I am off to the 2nd op 24/6 13 and I go to that one with dread after reading all this. They are removing the multi nodular thyroid completely as I have never been on any thyroid medication this leaves me with mixed feelings as it seems its a hit-and-miss situation if you get it right or not. As I have always been a slim person too I hate to think I will start putting on weight :o(

  • Hi - I hope you wont find things too difficult, I only had the one op but this due to multi- nodules and they did find a carcinoma in one so I am glad I had the op. my problems did coincide with the menopause hence the unwanted weight gain, if you are slim up to now I feel sure you will probably stay slim even when you get onto the medication. My op was 6 months ago now and the scar is barely visible now and I found the best way to lower my weight was with very low carb diet, easy to stick to and no hunger with it. Your surgeon will be in charge of medication (at least mine is) so you should not have too much trouble from the GP. Hope it all goes really well for you as I am sure it will. Sally xx

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