After years of various issues relating to throat infections, breathing and swallowing issues, I was diagnosed with Goitre by my local ENT Surgeon.
A series of ultrasound and ct scans revealed that my thyroid enlargement was benign however my trachea was compressed down to 20% along 4cm in my neck. In addition Pemberton's signs were also present which meant my blood flow was at times being restricted.
Following these tests I was wait listed as urgent for a Total Thyroidectomy. The surgeon advised that due to the compression on my trachea (which had most likely been present for a number of years) this had created additional significant risks for the planned surgery.
As well as the usual risks related to a Thyroidectomy, the other significant risk was tracheal collapse during and post surgery. It was agreed that the best way to manage these risks was to have me undergo awake intubation prior to full anesthesia, and awake extubation post surgery along with potential stay in ICU under sedation.
Both awake intubation / extubation required my active participation and the outcome of these procedures would define how long my ICU stay would be for and what state I would be in ICU.
As you can imagine during the weeks leading up to the surgery I went through a high degree of anxiety. Despite my symptoms and my anxiety I decided to be positive and I made sure that I went out for a walk every day and ate well in order to ensure I was as mentally and physically strong for the surgery and recovery as possible.
I had my surgery on the 13th July with following outcomes;
The awake intubation was a success thanks to use of the mix of relaxant / local anesthesia applied as part of the procedure in combination with the instructions given by the team. Overall this was not as bad as I though it was going to be, there was a couple of moment where I gagged (but that actually helped ) and also there was a 10 second period of breath holding where I felt as if I could panic, but knew not to. Next thing I knew was I could breath easily albeit with a tube down my trachea while awake.
I was then told I was going to be put under, and the next thing I will know will be my name being called and the process of extubation would be attempted. I felt my eyes get heavy and then I was out.....
.......6 and 1/2 hours later - I hear my name being called. I open my eyes and it's the anesthesia team and surgeon. I'm told not to panic and asked to nod if I know where I am. I quickly remember and nod. I'm told the surgery has been a success and my thyroid is now gone, I'm reminded I still have tube for breathing and that they need to try to extubate me. I try to smile and feel elated knowing my source of anguish has gone. A series of instructions and deep breathes and holding breaths and the breathing tube is out..... now came the crux point.... and I was soon breathing but with no stridor.
I was soon able to speak (and joke) and cough, which I was told were excellent signs. I was then given an oxygen mask and told I would still be going to ICU for 48 hours to ensure I was in the best place if any tracheal collapse were to occur.
In the end I was moved from ICU after 24 hours and put under observation in the ENT ward. I was soon eating, drinking and up and walking about, but I required a fair bit of pain relief. Tests for calcium were all good, so no calcium supplement was required. Following removal of drains tubes and other bit and pieces I was discharged from hospital after 5 days. The best part is I can now breath easily, and swallow food without coughing and choking as I had done prior to surgery. There are lots of other symptoms that I no longer have as well, including blocked hearing. I am now some what sound sensitive.
Two week later I'm making a decent recovery. My neck is still stiff and tight but my scar is healing well. I no longer need any pain relief. I have been put on 150mg of Levothyroxine and seem to be okay. I do feel quite sluggish and tired especially later in the day. I have been out for some walks but at a much slower pace than I did pre op. I have my first visit to docs for blood test next week so they can adjust my Levothyroxine as required. I'm not sure when I will return to work, as I think I need to get through the sluggish / tired feeling I'm getting before this happens. I'm also hoping to get back behind the wheel of my car next week as well.
For the record while in hospital I also sat with my surgeon and viewed photos taken during my surgery. Not for the squeemish but I just had to see what it was like. The surgeon made a joke about delivering two babies. Larger right and smaller left. These two large masses were like coconuts (no kidding). He explained that the normal adult thyroid weighs about 25 grams / 1 ounce. My thyroid weighed in at over 1 KG / 2.3 Ibs. He said he could not understand how I had managed to get by so long in the condition I was in. He said I had been very lucky indeed.
Denial plain and simple. I was in denial for years that I had a problem and now I realise how lucky I have been. I could have died in my sleep at any point due to the tracheal compression. Denial can be killer.
Onwards and upwards from here on in and glad to be through the worst. I hope by sharing this experience other people who require surgery gain confidence that all will be well, just make sure your have a good experienced surgeon and anesthesia team.
Thanks for posting your uplifting story of your thyroid journey. It will put many people at ease if they ever have to have an operation and am glad it was very successful for you.
I do hope you are prescribed a combination dose of thyroid hormones, i.e. T4/T3 especially as you now have no thyroid gland at all.
I wish you a speedy recovery and no problems
When you have blood tests for your thyroid hormones, always have it at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between dose and test and take it afterwards. This helps keep the TSH at its highest as some doctors adjust dose unnecessarily according to the TSH. Always get a print-out of your results with the ranges for your own records and you can post if you have a query.
That was a very calm and well explained procedure both from the surgeon to you and your wonderful write up. If only all surgeons would take some time to explain things! Thank you for sharing your experience and wishing you all success as you continue to pick up the threads again. Well done!
I consider myself to be very lucky. The ENT team at my local NHS hospital are (I am told) one of the best in the UK.
I would have been given my surgery earlier however due to the risks an enhanced team was required to conduct the surgery. This included two surgeons, additional anesthesia team members and the availability of an ICU bed. If none of the team were available they would have cancelled my surgery rather that take any additional risk.
I actually got a call from the ENT waitlist secretary two days prior to plan to say there was potentially a chance of my surgery being cancelled. I eventually got a call at 8pm the evening before to confirm I had to attend at 7.30am the next morning.
The whole week leading up to and beyond the surgery was probably the biggest emotional rollercoaster I have been on.
I will be forever grateful for the hard work, dedication, encouragement, support and care given to me by all the team involved in my surgery and recovery.
Wow what a tale (and very well written too) if yr not doing it already I would suggest you do a diary of yr symptoms/how yr feeling, itd be very useful at appts down the line. Dosage after thyroidectomy is notoriously difficult to get right and there is a general lack of knowledgeable endos. However you have been put on a good dose already.
My tt was dec14 for substernal mng , i was told the op lasted much longer than planned as my thyroid was "huge" wish I'd thought to ask to see photos like you! I was put on 100levo being told at the time "that's all anyone needs" ...bumkum...i got v zombified and actually fell asleep driving couple times in the months following op and also had to give up my job. Anyway am currently on 150 but it's a fight to hang onto as my blood tests are not what they want, my tsh always supressed which they don't like.
So as others have said get in habit of getting a copy of all yr blood results with the ranges for yr own records. Bloods that you need to hve post tt are tsh, ft4, ft3, vitb12, vit d, folate, ferritin, calcium. Some get magnesium chkd too but I've not managed to get that. I assume they tested yr antibodies before op to check for graves/hashimotos. Btw being told "you're in range" is not good enough, for many post tt we have to be higher in range to feel well. Anyway higher in a particular range might be normal for you, that's why there's a range.
Levo should be taken on empty stomach with glass of water and kept a minimum of 1 hour (others say 2 some even 4hrs) away from calcium iron and caffeine supplements or food/drink containing them. Most of us were not told this in hosp! I take mine in middle of night when I get up for bathroom (as I always do once lol)
Also to note is some (not all) get on better with certain brands of levo. Its good to stick to one brand. After some months I realised that some brands gave me stomach pain, I'm ok with Actavis myself. Currently im trying to get a t3 (liothyronine) trial as I believe that will help with my ongoing symptoms. I feel a combo of t4 (levothyroxine) and t3 would be a more natural medication as that was what my thyroid used to produce.
Thyroid uk has a list of recommended endos or yoy could ask to be pm'd here if you feel you need to change yrs at some point.
You've had major surgery so that in itself will wipe you out for while but it's obvious you are a strong positive person so that'll help tide you over any rough bits in yr recovery.
This site was a lifesaver for me, I wish I'd found it sooner. Also if you are in UK, on Facebook there's a brilliant site called UK Without A Thyroid. A specific group of lovely thyroidless peeps, and they have helped me alot too. Its lovely to be able to chat to someone in yr exact position .
Try sending admin a message? I do remember having chat first before being allowed to join. There are newbies joining every day although they get alot of requests.
Many thanks for your kind words, advice and support. I'm glad to hear you got through your surgery as well and appear to be on the road to feeling better.
The whole situation relating to surgery of this nature can be very overwhelming, as can the post surgery days.
I consider myself to be very lucky. The ENT team at my local NHS hospital are (I am told) one of the best in the UK.
I would have been given my surgery earlier however due to the risks an enhanced team was required to conduct the surgery. This included two surgeons, additional anesthesia team members and the availability of an ICU bed. If none of the team were available they would have cancelled my surgery rather that take any additional risk.
I actually got a call from the ENT waitlist secretary two days prior to plan to say there was potentially a chance of my surgery being cancelled. I eventually got a call at 8pm the evening before to confirm I had to attend at 7.30am the next morning.
The whole week leading up to and beyond the surgery was probably the biggest emotional rollercoaster I have been on.
I will be forever grateful for the hard work, dedication, encouragement, support and care given to me by all the team involved in my surgery and recovery.
Lovely account of your experience and I'm glad it all went well. Intubation whilst awake would have freaked me out but you made it sound okay. The team who did your surgery must have been amazing, especially with the photos. I had mine removed 9 months ago and like you, I have been writing my experiences on health unlocked. The most difficult thing I found and is still encountering, is stabilising my Levothyroxine and deficiencies in other vitamins and calcium. Doctors keep wanting to change my dosage because of suppressed TSH and they tend not to listen to my symptoms and how I feel. But being stubborn and a nurse, I've done as much research as I can and have been very insistent with what I want. Good luck with your journey. Be nice to hear how you are after a few weeks or months. Keep us posted.
Many thanks for your kind words, support and advice. I'm glad to hear you are also making good progress following your surgery.
The whole experience from first diagnosis, through surgery and onwards to recovery can be very overwhelming.
When I was first diagnosed with Goitre I thought I would just get some pills to shrink it. My surgeon as soon as he examined me told me it would have to be surgery for a Total Thyroidectomy. Queue my first pangs of anxiety at the thought of surgery. I got my head around this fairly quickly and though I was mentally prepared for the surgery. However following the scans and further diagnosis my anxiety levels rocketed - I now know and understand the planning that went into my surgery and the risk evaluation that had been conducted. My surgeon told me that in the UK there are probably only as many as 2 or 3 cases like mine in any given year. He told me that he and his fellow surgeon had both dealt with cases like mine very successfully in the past.
I only had one choice and that was to put my myself in their care and trust them and listen to everything they told and asked me to do. That's what I did and I am now one very happy guy.
I will keep you posted with my ongoing recovery and look out for your updates.
Thanks.
Good for you also bravo to the NHS for helping you in such a positive way.
Thank you for your thyroid journey. You gave such a clear explanation. It appears you were rather fortunate to be in the hands of an excellent team, sadly not the norm. Wishing you a complete and speedy recovery.
Wow I am absolutely speechless-you are a very brave lady and I wish you all the best! As someone who is also without their thyroid I strongly advise that you try and get t4/t3 combination medication! I got my full thyroidectomy in 1988, was given t4 only and suffered greatly. For over one year I have taken ndt and I am slowly getting better. I sincerely wish your journey will be much better than mine! However I am sure it will be as you have found this group! X
I really believed that mine was as severe a case of a goitre necessitating surgery as happened, but your experience puts mine to shame. My trachea was compressed but not to that extent and no extra procedures or assistance was necessary for the extremely competent surgeon to do his work.
A mere 2 days after the surgery I was discharged even with the stitches still in neck (removed by district nurse later). Almost broke out running in the car park to the amazement of my friend who had come to collect me. Was fun in Tesco's seeing the amazement on shoppers' faces when they spied my neck, still with stitches in place. Wish that feeling had lasted more than a couple of weeks!
The advice I would give you is that you keep a daily record of how you feel, any changes, what medication you have taken, what meals you have eaten, your weight, temperature, what exercise taken and whatever else you can think of. This you can use to demonstrate to your doctor/endocrinologist how your health has changed and will be excellent evidence to support any changes of medication you may require. Whether you will actually get any changes, other than of your dosage of levo, is, however, a different matter altogether.
Most of us without a thyroid do not do well on levo alone and require levo/liothyronine combo, or better still, NDT. Without an upgrade you may never feel well enough to go back to work. I would have been forced to accept retirement on health grounds following my total thyroidectomy if I had still at that time been in work and had failed to discover NDT, consequently losing an enormous amount of money in addition to being permanently disabled.
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Two weeks have past and I do feel stronger. I'm still not sure if my tiredness is down to the effects of anesthesia, surgery and post surgery pain relief or if it's down to my body adjusting to levothyroxine.
Earlier this week I went out for a walk and could not believe how weak I felt compared with pre surgery. Today has been good I have been out in the garden and mowed the lawns and done some weeding, without feeling too tired. Tomorrow will no doubt be when I feel it. Each day is different so I take each day as it comes.
I am attending my GP surgery for my first blood tests, so hopefully they will provide me with answers as wether or not they think I'm getting the correct dosage. I'm thankful to this board so far, the fact everyone is highlighting the fact I do not just have to rely only on Levothyroxine. I will use this advice if required.
Thanks for your advice and I hope you too continue to feel better.
I found such comfort in what you shared as I had R/Iodine to kill off my thyroid 10 years ago and it has taken five years to get a diagnosis of Hypothyroidism ?? It seems that most who have this treatment are put straight onto Levo after R/O treatment so am at a loss to understand why i was not. My major concern is that I hate Levo and hate how it made me feel so have changed to NDT which is compounded by a Pharmacy for me. I have been told by my Endo that this is rubbish and will never be of any use to me because I have no thyroid so have been so confused by this as this has proven from some recent test results to have brought my thyroid up to nearly normal levels, so it is confusing as I do not know what to believe anymore as i still do not feel good. Thank you for your input it was encouraging to read .
Camcam68 what a clear, precise & amazing account of your surgery. Thank you for sharing it with us. You talk of feeling weak & tired. Your tiredness is an accumulation of everything. It has been said that anaesthesia can affect the human body for up to 12 weeks post operatively. Also you have had major surgery & a lot of healing is going on below the skin surface which cannot be seen! How on earth did you manage daily existence with such an enormous goitre? You are a truly brave person. Look after yourself & do not rush your recovery. Thank you for sharing, please let us know of your progress. Very best wishes Pixiewixie
Thank you for your kind words and support. My 'bravery' is borne out of sheer stupidity on my part however.
I was actually in denial that something was wrong with me over a period of 5 years. I had noticed my neck becoming larger, but for some reason I just ignored it. Why? probably out of fear it was something really bad. I now realise how lucky I have been, and the fact that if I had said something earlier I would not have had to endure the surgery I have been through.
The times I did visit the doctors were when I had really bad throat infections and this masked my true condition. When I started to get wheezy I actually self medicated thinking it was asthma, and I went online and obtained Ventolin inhalers, which seemed to help for a while. It was my step-mother who noticed how swollen my neck was earlier this year when I was wearing a t-shirt, she recognised it as Goitre and told me to get to the doctors pronto.
I will take my time and not rush my recovery and from here on in I will tell the doctors when something is not right.
Dear Camcam 68 you are so honest. Hindsight is a wonderful thing! I think we can all learn from your experience!! Thank you so much for sharing it! Now all steps forward to health !( slowly ) very best wishes and gentle progression! Take Care Pixiewixie
Congratulation's !!!! Camcam68 It's behind you a now you can look forward to a happy successful life a head . I'm sorry that you needed to go through all this. Just know your not alone . We are all here navigating our thyroid journeys together . It will take a bit of some time to get your strength back after all you've been through a whole lot . Don't ask and don't expect a lot from yourself . Give yourself as much loving time as you can . Catch up on your reading movies you missed out on and catch up with phone calls . Now is the time . Nutrients are a key to helping you get back to your better self . Selenium , Vit"D", B-12/folate , Iron only if needed . Run labs when possible with Iron panel/ferritin . And Magnesium .
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