Hi I had a total thyroidectomy 10 days ago for Graves/hashimotos and large goitre. Wound healing ok still swollen but throat still sore and when I swallow feel food going down wrong way then I get reflux . Has anyone else had that post surgery or is it just early days? Also very tired and feel a bit “flat” I’ve been started back on thyroxine after it being stopped and changed to Carbimazole while I had Graves. Is this just all part of the recovery? I’m due back to work next week but the way I’m feeling I’m not sure if will be too soon. How long have others taken off work post TT?
Sorry loads of questions my thyroid has affected my life since 2006 switching from hypo to hyper and then getting TED so was an easy decision to get it removed but now hoping I’ve done the right thing .
Any advice would be great and thanks x
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Mrsmcl
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How was your Graves/hashimotos diagnosed? Did you have ever have thyroid antibodies tested or a thyroid scan?
What dose of levo have you currently been given? Do you always have same brand. Do you take levo only with water away from food, hot drinks & other medication & supplements if you take any?
Do you have a repeat test scheduled to see how your level are?
When you test do you test early in morning after fasting except water and delay levo until after draw? This give highest TSH & lowest FT4. Doctor often think this is not revealing and don’t advise about this.
For full thyroid function you need TSH FT4 & FT3. Also important to test B12, ferritin folate & vitamin D it these are optimal levo won’t work well.
Do you have online access to result or always obtain copies? Always view your results to know what’s been tested and if results are optimal, doctors are satisfied once results are anywhere within range. Sometimes testing TSH alone which is not adequate information to manage thyroid issues.
Reflux can be a symptom low thyroid hormones or may be related to that or part of the post surgery swelling which will resolve.
Recovery is individual, hopefully you will feel well soon. If you do feel the need for a little longer to recover after then please don’t rush back to work, after all you had a major surgery.
150mcg sounds like a fair dose. It is said an approximate guide is 1.6mcg per 1kg Of body weight. Eg someone 70kg would need 112mcg.
Thyrotoxic means thyroid levels FT4 & FT3 were above range - sometimes doctors see low TSH view this as hyperthyroid, although TSH is not always accurate. Especially when levels fluctuate which often happens when you have both hashis and Graves.
If in England, practices are contractual mandated to provide online access. Other uk areas vary. See if your practice offers it and ask for full access including historical record. Initially a basic access is given you have to arrange full access. If not available approach practice reception and obtain copies & don’t accept verbal or hand scribbled notes you need a printed copy, this will have sample date & ranges (ranges vary between labs so essential).
As you have a blood test scheduled it sound like you have that in place to ensure you stay on track.
Just really thought I'd lend my support, and say we see many people asking a similar question regarding speed of recovery.
It is surgery and the thyroid a major gland so please do not stress and give yourself time to heal and recover properly.
It seem surgeons are generally the ones suggesting the unrealistic recovery times, but simply because you are discharged doesn't mean you are well and fighting fit.
I suppose I need to accept it was major surgery surgeon and endocrine drs are very much get it out get on the medication and you will be fine in a fortnight it really doesn’t feel that way just now I wish I had read more about recovery before I went for it.
Well, yes, I think especially now, the hospitals are moving patients through as quickly as possible, as it seems the back log is growing by the day.
It's a tick box exercise, you were a patient waiting an operation, now you have been processed and a discharge back out into primary care imminent.
I think it is very early days so just be accepting and when home ensure you get regular follow ups by your doctor.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
I presume you have been prescribed T4 - Levothyroxine :
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body. T3 is said to be around 4 times more powerful than T4 with the average person needing to utilise / convert / find around 50 T3 daily, just to function.
Your own ability to convert T4 into T3 can be compromised by low ferritin, folate, B12 and vitamin D so it might be wise to ask if your doctor can run these as well as your TSH, T3 and T4 thyroid hormone levels.
You may need to supplement these vitamins and minerals yourself as you will likely be in the NHS ranges, but not at a high enough level for people living without a thyroid and on thyroid hormone replacement.
If your doctor isn't able to do this for you there are private companies who can, some even offering to have a nurse visit you at home to draw the blood.
You can find further information on the above service, along with "everything thyroid" on the Thyroid UK website who are the charity who support this amazing, patient to patient forum.
When with any results you need explaining, simply post them up on here in a new post along with the ranges, and forum members will talk you through your next best step back to better health.
There is a lot to read and understand but don't worry, it all falls into place like a jigsaw puzzle and once you find your corners, the picture takes shape and form.
I'm with Graves post RAI thyroid ablation in 2005 when 57 and now manage lingering Graves, thyroid eye disease, caused by the RAI, and hypothyroidism.
Thankyou for your reply I have a tel appt with Gp next week so I will ask if I could get those additional blood tests my calcium and phosphate were low on discharge but not at a level that needed supplementation they said
Hi Mrsmcl ill be having a full thyroidectomy soon due to graves and large goiter how did your operation go and how long did you have to stay in hospital?? And how long did you wait for it after the refferal?? Sorry for the loads of questions 😅
My operation went fine my scar is around 2 inches you feel a bit sore after the operation but paracetamol was enough for pain the wound might feel a bit tight and swollen. . I did not have a drain . It’s sore to swallow but not too bad . I was eating and drinking normally the day after. No damage was done to my parathyroid but my calcium did drop so I had to stay in hospital two nights for them to keep an eye on this but I did not require calcium supplements. Unfortunately my wound has been slow to heal and I’m 3 weeks post surgery it has a build up of fluid my Gp has spoke to my surgeon and I am to see him for follow up sooner but I think I have just been unlucky my gp said. I suppose everyone heals different.
I was referred by endocrine last august 2020 to ENT and was seen by ENT end of April 2021 once he agreed to do it ge said I would hear in 3-4 months . I then was given a date of beginning of June which was a surprise but unfortunately I had to cancel as I caught Covid ( bummer as I was double vaccinated months before I caught it!) anyway had to be delayed 7 weeks post covid and I was done beginning of August.
If you have any other questions Myself and I’m sure others on the forum will be happy to answer . X
I just read your Bio if it’s been an urgent referral I would expect that ENT will see you a lot quicker than me but again each hospital is different . I hope you don’t have too long to wait . I was told I had no other choice I could not get RAI as I have thyroid eye disease and I was going from Hypo to hyperthyroid then hypothyroid as I have antibodies for both and not due to being over medicated. I hope you hear soon from the hospital especially with you feeling so unwell.
Hello, just to wish you luck with your recovery and thanks for posting your experience.I have graves and TED also.My graves has been increasingly difficult to manage and I'm fed up of feeling ill.I have asked to be referred to ENT to look into having my thyroid removed and it's very helpful to read your experience.
Thank you for posting your questions @Mrsmcl. And for all the relying posts, thank you too!Maybe my recent experience may help?
I am 5 weeks post having my thyroid surgery, 99% removal and had 24 hours in the hospital. The very efficient and, in my opinion fabulous surgeon and support team at the Blenheim Head & Neck department of The Churchill Hospital in Oxford, suggested I did not drive or hack my horizon on horseback for two weeks after discharging me, but that I should be good for gentle work and play after that for two more weeks.
Coming from being hyperactive for so many years it was hard to know what is a normal amount of doing very little to recover. I totally overdid things and think the suggestion, by @oatcake, of six weeks recovery time is more appropriate. Be kind to your body as my mum also said!
That horrid sensation of something in the back of my throat that was frankly terrible at first, has now diminished but is still noticeable if I do not hydrate regularly.
I did have a drain in my incision and was surprised how much stuff it drew down during my overnight in the recovery. The incision is about four fingers wide, neatly glued no external stitches and I massage bio oil in as directed by my surgeon on the four week follow up telephone appointment. It is tight and a bit uncomfortable still but my neck mobility is much improved compared to pre surgery when my many goitres limited my very much.
My new drug regimen is yet to be decided, (100mcg Levothyroxine on discharge) and my first parathyroid blood test at week two, still shows the same very low calcium as post surgery (only 3 parathyroids found).
At that test with my local doctors, when the nurse asked my how I was doing, I just crumpled in a teary mess. Hormones like moths round a lightbulb still. The nurse booked an appointment with a GP who she thought would be perfect to take me through the next part of this thyroid journey, she was right! The GP was so patient with my queries answering in an easy to understand manner and setting up a year plan for checking my progress, blood tests and general health checks. I now feel very well supported.
So, in a nutshell;
Give yourself more time to mend.
Don’t be hesitant to ask for more help/ advice.
Do ask for a different GP if you have no confidence in your allocated one.
I am now 5 weeks post surgery and like your self I feel a bit of a teary mess I’m hoping it will pass and just need my levels to sort themselves out. My wound has been slow to heal still swollen and uncomfortable to swallow. I’ve had to reduce my thyroxine as overmedicated and I have the symptoms of this . I’m heading back to work at end of this week not sure if I’m totally ready to return but I work within a small team and with staff shortages and covid I felt I was needed another sick line would of went down like a tonne of bricks maybe being back will help with my mood I don’t think people realise the impact having a thyroidectomy is on your body I don’t think I totally understood prior to surgery. That’s why I’ve been glad to find this forum and read other posts and take the advice that has been given
Thankyou for your honest and detailed description of your experience.I have just been referred to ENT by my endocrinologist. I have graves disease which is proving difficult to control so I am considering thyroidectomy.I don't have a visible goitre but my throat feels full/blocked and my nose is always stuffy.It is always helpful to hear of other's experience whether good or bad so an informed decision can be made.Wishing you luck in your continued recovery.
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