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For those of you who read my earlier post or follow me on Facebook or Twitter, you'll know that I underwent surgery on my thyroid last month.
One thing I noticed when frantically googling in a pre-op panic was there didn't seem to be much information on people's personal experience with having a thryoidectomy.
I don't know if I was just looking in the wrong places, but for those of you who are facing a similar situation to me, I wanted to provide an insight into my surgery and my personal experience of having a thryoidectomy (thyroid removal).
I'm sorry for those of you who think it's slightly irrelevant and a deviation from the coeliac theme of this blog but hey, variety is the spice of life!
After suffering years of an over-active thyroid, which can be linked to coeliac disease, I finally had my thyroid removed on 14th December.
Because I had a bit of a goiter (lump) where my thyroid was - a big part of the reason I was having it removed - the incision ended up being relatively low down on my neck - nearer my collar bone.
The transformation has been amazing - I may have a scar (which is healing remarkably well) but for once I feel like my neck is normal and there's no lump!
I stayed in hospital for four days, had half of my staples removed the day after my op and had the other half removed a few days later along with my drain.
For those of you that are curious (as I was) having staples removed sounds far worse than it actually is - I couldn't even feel half of them coming out and the relief I felt afterwards made it worth it!
The drain however, was slightly less pleasant and having that removed was probably the worst part of my experience!
Three weeks after surgery, my scar is looking a lot healthier!
Now, three weeks later, my scar has improved a lot - I still have some numbness around that area and it's still a bit sore but I figure that's only to be expected after having major surgery!
Bio-Oil has also been my saviour - I would DEFINITELY reccommend this to anyone as it has stopped my scar itching or hurting as much and it is healing up so well already, I can't believe it.
It took about two weeks for me to be able to drive and move my head properly again. Now I still have a little trouble moving my head enough to reverse and if I'm around a lot of people I can get a bit of an achey neck but I've found moving it has helped a lot with feeling better.
So there you have it - it's not the most comprehensive view on my surgery (I didn't want to bore/scare you all!) but I am feeling so much better for it and now I only have my coeliacs to think about!
If anyone has any questions or wants to share their experiences of thyroid surgery, comment below or email me on: glutenfreeblogger@hotmail.co.uk.
Your scar looks longer then average; how was your voice after the surgery?
Hi, I am 5 days post op after having a multi nodule hemi thyroidectomy, I have 16 staples in my lower neck area and currently am finding It quite painful to keep my head up right as the tension at the back of my shoulders is awful, I have them removed on the 7th day so hopefully this will improve, my pain relief is now getting less, so things must be improving. I wonder why I had staples instead of sutures???? I return in 2wks for my results, they are annalyzing a frozen section of the gland checking for cancer cells, as this all began by feeling a painless sensation in my throat, having an ultra sound scan then FNA test, the 1st one being inconclusive, the 2nd one shown what was described as suspisious, and the words papillary cancer was told to me, along with a book 'understanding thyroid cancer', as you can imagine my world fell apart, I was so scared, I am a 54yr old female, quite healthy and have a wonderful family, the Mum to 2 grown up daughters, 3 grandsons under the age of 5yrs, and a marriage of 36yrs to a wonderful man, so hearing this was just awful. So they decided to operate, which I waited for about 5wks, they said that once the left side was removed they would send gland to the labs whilst I was still asleep, they would check It out and continue with a total thyroidectomy if It proved to contain bad cells. When I woke they had only taken the left side out, I thought GREAT, but the surgeon said it was inconclusive and It would be checked out more thourghly, I get the results in 2wks, so again I am worried sick, If It comes back bad then more surgery will follow, If good results then I can get on the road to a complete recovery and look forward to a healthy life.
This is my 2nd thyroid operation, had 1st one in 1981 whilst 4mths pregnant, at the time I had been underactive, then over active, having experinced a goitre, the reason behind the op was for the health of my unborn baby, which I might say she turned out to be just fine. I really thought after having that op way back then that i would never have to have surgery again, but life is not always straight forward, never mind fingers crossed this will be a good outcome and all will be well. To everyone out there who is awaiting surgery, you will be ok. Todays surgery and care is a lot better.
Hi Juliet, thankyou for sharing your experience on here, it is nice to see everyone leaving their own stories. Have you tried a hot water bottle on the back of your neck? I had awful stiffness for weeks but think it was partly because I was too scared my head would fall off if I turned it too much!!
I think they try and put staples in because it minimizes the scarring, that is what they told me anyway......
It sounds like you have had quite an experience, I'm sorry to hear it has been a bit of a rocky ride. It's great that you still sound positive though, and I have found your story quite inspiring. I hope that you start to feel better soon and thankyou for sharing this.
Sarah x
Glad you are feeling ok Sarah. My Dad had this op in the early 1960s when I was quite small and his scar didn't look as neat as yours, although I think after all these years it has faded now. He did end up 10 or so years later with the opposite trouble (I can never remember whether it is over or under active) when he had to drink radio-active iodine which did the trick, but now another 25 - 30 years on he is on thyroxine, so he has had trouble with his thyroid for most of his life.
Are you ok to drive so soon after an operation - I thought insurers didn't recommend it for several weeks?
All best wishes,
Sue
Voice after surgery was fine! Talking seemed like a lot of effort at first but so did everything else - was a bit quieter than usual but nothing wrong with it. One of my main symptoms of hyperthyroidism was that I talked super-fas, so was a bit of a shock at how slowly I was talking after the op!
Scar does seem to be very neat and yes, it is a little longer and lower down than expected! Think this is due to the size my thyroid was as it was very over-active.
Sue - thanks for the tip about driving, I hadn't thought of this! It had been 3 weeks since my surgery and am feeling fine but I will ring my insurers tomorrow to double check just incase!
Hi
so glad your op went well, and it is a very neat scar. I had the op 2 yrs ago, after having very over actice thyroid T4 =72!! so i will be interested to see how you get on now. I havn't had a diog for Ceoliac, but have a lot of the symtoms and only recently came across the link to Graves disease. unfortunately I havn't had a lot of support over the thyroid. the thinking seemed to be , your thyroid is sick, take it out, there you go, all better, no thyroid therefore no illness!! for me , not so!I'm so glad I've found your blog and am working my way through the archive, so good luck and thank you in advance, for the no gluten advice.
I'm due to have a total thyroidectomy in 3 days time. I can't help but look up pictures of thyroidectomy scars - i'm so worried about it! I'm also worried about talking, even if it is all fine, the thought of it seems so much effort already!
I've got a 14 month old baby, I worry I'll need 2 full weeks off being a mum if you say you couldn't really turn your neck. And I thought I would only be in for a night - why were you in for four nights?
I'm freaking out!!!!!!
But thanks for your blog, it's nice to hear a very calm report of the surgery.
Thankyou so much to everyone for your comments - it has been great to hear surgery went well for others and has made me feel more supported and optimistic through my experience!
Jane - that is an amazingly overactive thyroid!! I think my t4 was 40-50 something so also very high but I thought that was bad! I think it is a bit of an issue to find support when you have a thyroid problem - I have been very lucky with my consultant as he has been very supportive and helpful and I seem to be well on the road to recovery now (with the added bonus of free prescriptions for life, always nice!)
Ashleigh - I am so glad you have commented on this and found this helpful because 3 days before my op I was in EXACTLY the same position as you - terrified with no idea what to expect and manically googling every detail!!
I don't know why I was in hospital for so long - a combination of things I think but have noticed through my research that diff hospitals/countries etc vary from day surgery to longer stays! Firstly - they removed some of the little lobes (the name has failed me?) which help produce calcium and my calcium levels dropped very low which meant I had to go on a drip and be monitored for a few days. I also had a (and I quote) "very large and oozing" (that makes me cringe every time, yuk!!) thyroid which was still a tiny bit overactive and therefore I had a surgical drain which I think collected more than they thought, etc. So that's why I think I was in for so long but I can't speak for every hospital!
Also - I think the reason it took 2 weeks to be able to gain more mobility in my neck was that I had a very large scar and was also scared to take off my dressing which was stopping my movement a lot! I also am a massive wimp and it seems other people recovered quicker than me!
Good luck for your surgery - I'm sure it will be absolutely fine and I hope this has helped!
Sarah
Also I forgot to mention (I think?) that I contracted a nasty cold/flu thing as soon as I left hospital so that meant I took a lot longer to get better!
hiya sarah thank you for writing about your experience..im 23 and had a total thydroidectomy a week ago i too googled absolutly everything from scars to proceedures i'd just rather know every detail! my operation went well also stayed in for 3nights when they said i would only be in for 1 but in all honesty i really needed to stay put! when i was in hospital all i kept thinking was im never going to b bk at work in 2weeks but after getting home and taking meds and having some good food in me i feel 100 times better!! my scar is very similar to yours maybe slightly higher on my neck but i am so happy after having a massive lump on my neck for 3years..when did you start using bio oil on your scar?
Hi, I had my total thyroidectomy 3 weeks ago and I feel great. I could find nothing but horror stories when I was looking for info,so much so that I had second thought of having it done. I've been hypothyroid since 2001,was on synthroid for 4 years and after doing research switched to dessicated thyroid (erfa). My family dr didnt want to put me on but I insisted and he made me sign something that he didn't agree with it lol. Anyway for the last year i was choking on food and choking i my sleep so bad it felt like I was suffocating, the heartburn was so bad I could feel in burning inside my ears at night, I went to my dr who said it was acid reflux and gave me prescription which i didn't take, she didn't feel my neck either !!!!!. After watching on dr. Oz about gluten allergies and doing my own research i discovered I had a gluten allergy,after I cut out gluten 90% of the choking stopped.
So in April I was watching dr. Oz again (around Jan 22nd) and he was talking about thyroid cancer and was doing the water test (you drink water infront of a mirror and watch your throat as you swallow). Well I watched as this huge lump went up and down so I went to the drs and he sent me for a scan which showed a complex nodule the size of a golfball,I then had to have a fine needle biopsy which came back negative for the most dangerous cancer (can't remember what its called). They said I should have a total thyroidectomy as the lump grew while I was on medication (which is used to shrink nodules) and I had small ones growing on the other side.
So I had it removed on April 1st, the surgeon who did it was Dr. Joseph Wong,he had performed over 3000 so I knew I was in good hands. One of the other surgeons working on me (there were 3) told me just before surgery that thyroid tumours are like icebergs,what you see on the scan is usually just the tip which turned out to be very true. It had grown into my chest,was the size of a large potato,had pushed my trachea over and was restricting it and was on top of my aorta which would have caused big problems if it had had a chance to grow more and explained the heart palpitations I was getting.. The scar has healed so well,its less than 3 inches .I would post a pic but there's not an option to add one) I feel great,so much better than before, I am taking my same dose but may have to have it increased. After surgery I felt really sick to my stomach and was in recovery for nearly 5 hours.I could only whisper and was in a lot of pain. I didn't want anymore pain killers because I knew they would have made me throw up which wasn't a very nice prospect considering the stitches in my neck. Apparently they put in 4 layers of stitches because they cut though 4 layers of muscles. I stayed in hospital for 2 days/nights so they could watch my calcium level which dropped a bit but didn't go under 200 .My voice came back stronger after a day although it was deeper but now is close to what it was before but definately weaker ,that can take up to 3 months to get back to normal. I felt pretty weak and unsteady but by the second day I was walking round the hospital. I had a drain which they would suck out with a syringe a few times a day,it was a weird uncomfortable feeling but didn't really hurt. I had the drain out the second day which I was dreading but it didn't hurt at all, the nurse did it so quick. I had dissolvable stitches which I had to take of in the shower 10 days later, I was really happy with the scar. I kept a photo log of the scar which i can post. I take a lot of supplements and was taking them for about a month before which I think has a lot to do with me feeling so healthy so quickly . I take iodine,selenium,iron vitamin C and D,biotone EFA,calcium and magnesium s well as my desiccated thyroid. My experience was a really good one and I feel so much better,I was worried about putting on loads of weight as that was all i was reading about,I haven;t in fact I've lost weight, I think if you eat healthy and are on the right medication you won't gain weight. I have a lot of energy and need sleep less than i did before. I had to sleep with a neck pillow for a while which helped and I didn't drive for 2 weeks as my neck was still stiff. I just wanted to put out my positive experience out because I couldn't find any,everything I read made me not want to get it done but I'm so glad I did 🙂 Lorraine
I loved to hear tour stories i will undergo total thyroidectomy this 21st of July, please pray for my fast recovery. I really need this inspiration now
thank you
Hi hun how are u feeling today ? Still no major weight gain?
I forgot to say I put vitamin E on all day every day and its worked wonders.
Hi Lorraine,
I am just happy to hear your good experience and as you correctly said there is no good experiences mentioned anywhere and a detailed explanation of yours step by step experiences.
I was exactly looking for the questions which you had answered in your expereince like weight gain and all.
How are you doing now ?
i have hashimotos and your symptoms like chest congestion and breathing problems are all which i relate to. But my ENT surgeon told me that he cannot guarantee that even if the surgery is done the chest congestion will go away and i was shocked to hear that. I am thinking to consult one more doctor. May i know your doctor was ENT SURGEON or what qualification he had. I am not getting proper doctor who is ready to offer me time to answer my questions and to give me understanding of the procedure.
This is the first time i am writing and asking online since your experience has helped me a lot . Before surgery do you use to get shoulder blade pain or pain in the back of the chest, shoulder pain,neck pain , pain in the ear socket I am asking you because my doctors are giving me individualized diagnosis going to gastroentologists, orthopaedic for acidity , shoulder pain and all that is normal. You mentioned you use to have burning in eyes at night time do u use to get during day time..
How are doing now on calcium and other problems like fatigue, digestion , metabolism and all.
I would appreciate your any response if time permits.
Thanks to SARAH.
I am having a hemithyroidectomy next week and have also been experiencing the shoulder blade pain. Did your doc comment on that at all ? I didn't even think to mention it but it is not going away both front and back. My tsh levels are high and I have gained quite a bit of weight this past year, I am hoping I don't have to wait 6 weeks to go on the meds ?
I opted to have my hyperparathyroid removed and they found a rock hard mass in my thyroid. Parathyroid is a gland that sits next to the thyroid that creates the hormone that makes calcium when its hyperparathroid there is to much calcium in the blood which makes you very sick. I had my surgery 3 weeks ago I feel a little tired the doctor wont put me on a normal dose of medication until I drink the radio iodine. But I am on 90 milgrams of armour its a bio identical hormone. I have spoke with folks that went on the pharmaceuticals thyroxine or what ever its called and then they switched to armour and felt much better. I am so glad I did the surgery I can not believe the doctors that tried to talk me out of it, telling me it was dangerous. My scar is 3" long and I did not have stitches I was an outpatient. I did gain about seven lbs, however I am not regular with my medication yet. I did spend a lot of time finding an ENT that was skilled. I interviewed five of them.
Thanks Sarah,
Your right! There isn't much info out there on how to prepair for, or what to expect after :!
I'm 55 and having the total thyroidectomy day after tomorrow. We are different in that I have hypo- with a Huge Goiter.
I'm not even sure if 4" will be large enough to get it out. My right lobe is 10 cm & the left is 11 cm.
I will be so glad to get rid of this "bowling ball" in my neck, but am a bit worried about scarring. I'm not too vain but it is a concern. What is Bio-Oil?
Also did you have unexplained weight loss or gain afterward?
Thanks sweetie,
Kathy
Here is the link to the bio-oil website so you can have a look Kathy 🙂
http://www.bio-oil.com/uses.html
good luck with your op, I am sure it will all go well 🙂
I didn't have any weight loss or gain at all - initially i lost a bit because I wasn't eating but as soon as it became less sore after a couple of weeks I went back to normal!
I have found that going in the sun (with a high factor suncream on my scar so it doesn't burn!!) has definitely helped me see an imporvement in the healing but you need to be VERY careful it doesn't burn - I literally slap on the factor 50 and go out for half an hour a day! Also put bio-oil on twice a day - my scar has healed a lot over the last few motnhs, will post a more recent picture up soon.
Good luckw ith your op - would love to hear how it goes!
Best wishes,
Sarah
mine is the same kathy and i am due to have mine out after xmas after having a baby in me throat i am willing to suffer a scar i can hide with necklaces and scalfs
Kathy - how did it go for you?
Hi, i'm three weeks post thyroidectomy and feeling really well. It is so good to find positive comments, I was SO terrified before my surgery and I don't think I should have googled so much as all I seemed to read was all the negative info and scary scar photos. My thyroid was removed due to suspect nodules, having Graves disease and being totally hyper... I had a fantastic surgeon and my scar is about 6 cm long and healing really well. I have lost the shakes and tremors in my hands and have not been feeling anxious sweaty and out of control since the op which I can't quite believe just yet. My biopsy results were clear and cancer free so I just feel so thankful. I'm not vain but I was a bit freaked about having the scar on my neck but it's such a small price to pay for feeling well again and there are people so worse off than me. I'm using Palmers Cocoa Butter Scar serum which is similar to Bio Oil and massaging three times a day and once the swelling goes down I really don't think it will be very noticeable to others. I stayed in hospital for three nights although I could have gone home after two, they just wanted to check the calcium levels in my blood were all good before allowing me to go home. My first night was spent in the ICU in case of swelling, however I was eating ice chips, jelly and icecream four hours after the op. I did have a really sore throat and my voice kept cutting in and out for several days. My head and neck have been really stiff and I have just started driving as I wasn't comfortable turning my head too far around prior to that. I'm taking 100mg thyroxine daily and will see how things go...all the blogs I read have said I will stack on the weight but I guess I'll just have to eat healthy and wait and see! All the best to everyone, Best wishes, Penny
My scar is pratically non-existant. My surgeon was incredible... truly you cant see a thing and it was only like an 1.5" to being with and yes I had a total thryoidectomy. My only problem has been weight gain and my muscles are always sore. I dont know why but it's been since the surgery. Anyone else have muscle trouble? I fell like and old lady and Iam only 44. Any suggestions
oh and 2 weeks to recover was not the case for me. I actually was ready to go back 4-5 days after the surgery. I was tired sure but other than that felt just fine did not need pain meds. However it made my period pretty terrible for the 2-3 months after but they are getting better. I go in for my 2nd check up next month. I had removal on 2-24. I did not have to have a drain or anything like that. I was very nervous about having the surgery due to all the things that I was reading on line but it was alot easier that I was expecting. Dont be too nervous if you need to have your removed.
I have felt pretty tired and achey after my surgery, but I put it down to working a 50 hour week running round a busy pasty shop!! However, am intrigued to find out after you mention this whether perhaps it is something to do with my thyroid? As I know what you mean about feeling like an old lady....and I'm only 22!! That is great about your scar and your quick recovery time! I have been left with a rather larger scar, so perhaps this is why it took me so long to recover....that and the fact I am a total wimp!! Thanks for sharing your story, it's great to hear from others who have had this done - everyone's experiences seem to be different! X
Hi can i say thank you so much to everybody who has commented on here because i have just had my ultra sound and cell tests with the needle in the throat last week and am due to have my operation in january , the consultant on monday made it very clear to me the pros and cons but i have a large goiter and have had it for over 20 years and it is now to big to ignore. I was very scared till i read your stories on here but now feel alot calmer. After years of teasing and men looking at me like i have some child developing in my throat i have decided to have surgery and my daughter gets kids coming up to her and saying her mum used to be a man coz she has an adams apple...i was told that i will be low in calcium and on tablets for live and if the vocal chords fuse together then i will have to breathe through a tube in my throat but from what i have read and heard this is very rare.
Sheryl, I am just now 2 days post op with the same problems you have. I had a very large mass that had even began to push down on my left lung that had likely been there for about 10 years. The surgery went very well and I do have a long scar but I believe it will be minimal after healing. I was in the hospital overnight and was able to come home with orders to take a calcium supplement along with pain meds and antibiotics. My doctor had also warned me about the nerves around my voicebox since the mass had been there so long. He told me after the surgery that he was able to easily move around them and I've had no problems with my voice.
Kelley that is so good to hear your surgery went well, thankyou for commenting and sharing your experience.
Sheryl I am so glad that these stories have helped to calm your nerves - I was panicking massively before my operation which is why I wanted to encourage people to share their stories - it is always the bad ones that get published but really there are so many more that are actually positive - people just don't shout about them!
HI Sarah,
Hi Sarah, Thank you so much for sharing your experience,.
How are you doing now. I just ended up reading your blog today for the first time when i was googling regarding the surgery. I am commenting first time online after reading your good experience. Did you had total thyroidectomy or partial thyroidectomy. I am having hashimotos and left side 4.5 cm nodule and recently started breathing and chest congestion, shoulder blade pain, pain in the ear and ear socket , shoulder pain, left side of my brain feeling tight , pain at the left base of my neck but the ENT surgeon says its not all related and told me that removing the nodule not necessarily guarantee that my chest tightness will go. I am thinking to consult another doctor. , Wanted to know from you was your doctor a ENT SURGEON.. ?. My thyroid levels are normal. What symptoms you had before the surgery. Thanks once again.
I’m having surgery on Dec10th 2018 and I’m so happy to see all these comments I have a mass on my right thyroid and the plan is to remove it and send to to pathology while I’m still in surgery and if it comes back cancer they will remove my whole thyroid. They found Nodules on both sides of my thyroid and they biopsy it years ago and it was not cancer and I’m was being Monitor once a year with a ultrasound by my enconoglist and last year my right side Nodule was a lot bigger but he wasn’t that concerned and said if it grows any larger on my next visit he will biopsy, Well just a few days ago I had the ultrasound again and it got so much bigger that he sent me to ENT surgeon the very next day and now my surgery is the 10th, my neck is so big and I’m having trouble breathing and got use to sleeping with the remote under my neck so I can breath. I’m so ready to get this out but so scared too, I have goggled everything about this surgery. Haven’t seen personal experiences until now, The risk of my vocal chords being damaged or even worse having it so badly damaged it will leave you with a Permanent Treahea 😬 has me scared and I sing. My ENT is thinking I’ll just be one night in hospital and said most people don’t have much pain but it looks pretty painful to me. I’ll be sent home with a narcotic pain pill but my ENT said most don’t use it after a week. Can y’all tell me how long you had to take pain meds, I know everyone is different but I don’t want to be in pain and will be embarrassed if I have to ask for refills. I have had lots of surgeries Total colectomy with permanent illeostomy and had my spleen, hysterectomy, tonsillectomy, I have heart trouble and was sent to Houston for possible open heart but I backed out for now, Seziues, blood clots in my lung, fractured my back last year. But this surgery scares me the most. I’m 41yrs old and I can’t back out of this one. My medical history just goes on. I worked in the OR for a few years so I know about risk but I worked at a very small hospital and never seen thyroid surgery. Mainly hysterectomy, C-sections and Gallbladder. Orthopedic cases. If y’all can give me any advice other then what I have read please tell me. Thank y’all for this blog it’s good to see these comments.