My gp tells me total thyroidectomy for multinodular goiter is a simple operation. What do you think ?
Should I trust my gp?: My gp tells me total... - Thyroid UK
Should I trust my gp?
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Fiaxseed
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Dear Flaxseed,
A TT is anything but simple! It is a complex surgery that involves great skill, experience and care on the part of the surgeon.
The surgeon has to make sure he or she does not damage your vocal cords or your parathyroids (4% for Graves patients). With Graves’ disease, you are at risk for a thyroid storm. I am not saying you shouldn’t have surgery if you need it - but just that like any major surgery, it carries risks and you need a good surgeon to take care of you.
I was very lucky that my surgeon was skilled, experienced and really cared about his patients. His audited error rate on 3,000 surgeries was 0.3%. I had an excellent surgical experience and recovered from the surgery itself fairly quickly. I did not have vocal cord damage or parathyroid damage, but I did have very high blood pressure post surgery which fortunately did not develop into a thyroid storm from the Graves’ disease - and was in the recovery room being monitored for 8 hours before getting to my regular room. My surgeon was prepared for it.
I do not regret having the surgery. I needed it and I was facing an emergency situation. I too have Graves and had a huge toxic multinodular goiter. It was the size if a grapefruit on the right and a navel orange on the left. And I do feel much better after the surgery - but it is a slow process for me. You may have a very different experience and I truly hope you do should you need to have surgery.
Are you ready for surgery or waiting to have surgery? If so, let me know and I can tell you what questions to ask a surgeon. It is a not a simple operation.
Hello greekchick thank you for telling me. I'm on my public health waiting list. Please tell me what I needed to ask the assigned surgeon. I have some doubts. I have goiter but its not too big. And gp has no report from consultation with him yet. He didn't tell me I needed it out. He said: stop carbimazole you are under active now and just have it out. I've only been on carbi for 3 months. Not much of a fair go. In Australia.
Hi Flaxseed,
I had time today to go over your old posts and saw your new post this morning. I'll tell you what to ask a surgeon, but after seeing some of what you have reported, I'm going to comment on that. I'm also going to answer your newer post because I can't remember the question and if I leave this page, I'll lose all the stuff I just wrote.
1. Confirmation of Graves: I know you said you do not have Graves in an earlier post. Are you absolutely positive you do not have either Graves based on test results or is that just what the specialist told you? If the specialist ran these antibody tests you should see the results for yourself and if you had any antibodies at all. You must have antibody tests prior to ANY surgery for your condition - you need confirmation. I cannot emphasize it enough. greygoose mentioned to you that you might have Hashimoto's and this is very possible and you would undergo surgery for no reason, particularly because you mentioned that your goiter is not terribly large and the swelling is recent. Do you have anything like Medichecks in Australia for getting your thyroid blood tests by yourself (I am in Canada and we do, but only in certain places)?
2. Carbimazole: I read in your earlier posts that you have been on it only 3 months and your surgeon said to stop it. Provided you remain "euthyroid", meaning that your blood work is well within the ranges, that is fine - you should stop it and the surgeon is correct. But you are not euthyroid. You reported these results in your previous post 13 days ago:
TSH .08 (.05-5.5) . - just in range but at bottom end
T4 9.2 (11-22) - out of range and low
T3 5.1 (2.7-6.1) - well within range
It is a necessary protocol, and supported by research, that you must be euthyroid before you have a TT if you have Graves or are hyperthyroid. That's why I am emphasizing that you must have confirmation by antibody blood test whether or not you have it. It is very risky to have a TT if you have Graves and are hyperthyroid at the time of surgery because the chances of a thyroid storm are much greater. You will need another blood panel immediately prior to surgery to ensure you are euthyroid, and if you are hyper again, they will have to wait. Please check this out before letting anybody take out your thyroid. My endo has a patient on Tapazole for 11 years and counting - if you have no side effects on the carbi, and it looks like you are not hyper at the moment and correctly stopped it, there seems to be no rush to surgery.
3. Rush to surgery: It's not clear why your specialist is not supportive of a watch and wait program for your nodules and thyroid. Have you asked that question? Are any of your nodules "cold" (i.e., potentially cancerous) - or so large that they are impacting on your breathing or voice? Have you had a FNA biopsy? I could not find the answer in your previous posts. Just to give you an example, I waited 25 years to have my thyroid removed because I was always borderline and did not have Graves at the time (BTW, I'm not recommending that to anyone, let me be clear - that was my decision together with my doctor). I only developed Graves the last 2 years prior to my surgery, and in my case, the goiter became huge. I would have stayed on Tapazole if I could have if that had not happened.
I do understand you are in a public system - and that your choices for certain things are limited. However, you have the legal right to refuse any treatment, and as well, the right to see your medical records. All your doctors seem to be pressuring you into surgery - and they haven't explained the reasons why to you - just that they want it out.
OK - so what to ask a surgeon should you decide to proceed (and I remember you telling me that he is not a thyroid surgeon but he does lapband surgery, yes?):
1. How many thyroid surgeries does he do per week or year? (minimum 5 per week, or about 100 per year is OK)
2. What is his error rate (see my previous answer to you - should be less than 1%) - if he doesn't have that info, then ask question #4.
3. Does he use a vocal cord monitor? - NOT OPTIONAL
4. Has he ever had a patient with damage to the vocal cords or parathyroids? How long ago? What was done to help the patient if this happened?
5. Is he prepared should you have a thyroid storm immediately post surgery? And don't let him tell you it can't happen, even though the risk is low. At the least, he should be prepared for significantly elevated blood pressure, and the risk for this is not as low.
6. Will he follow up with you and examine your throat with a laryngoscope (camera through the nose to see vocal cords) or refer you to an ENT so you can be examined post surgery for your vocal cord condition?
7. Who is responsible for your care after the surgery, and how many times will he be seeing you after the surgery?
My advice to you - please be sure what you have and the condition you are in before any kind of surgery. If you need it, I completely understand, and I would never tell anyone what to do. What I am telling you - you should be very sure before allowing anyone to remove your thyroid.
I am wishing you the best of luck. I can understand why you have said in your previous posts that you don't have confidence in any of your doctors. You have good reasons for that, and I don't say that to worry you, but to empower you. Let me know if I can be of further help. Sending a big hug your way today. I can tell you are very worried and upset.
Tsh 1.4 greekchick
My specialist put me on carbi may because she said it was the best way to go for me since my tests in April showed my thyroid doing very well. A review has been scheduled for December. My specialist didn't refer me to surgeon- my gp did. Hospital have no record of changes to that. Her advice -/carbimazole for 6 months. Gp thought otherwise. And did not notify or consult.
You definitely need to ask your GP why he is contradicting specialist advice. Before making a decision on something which is irreversible, I would ask to be referred back to the endocrinologist. As Greekchick has said, you also need to be sure you don’t have an autoimmune disease since if you have Hashi’s, you (probably) don’t need the surgery anyway, and if you have Graves’, three months is very early to be taking such a decision.
I wanted to stay on carbi but with a reduction in dose based on my symptoms and test results. But gp ignored that.
Hi again greekchick. Too and tg antibody blood drawn this morn. Too soon for function I'm told. I also rang liaison at hospital to defer my consent to be placed on waiting list for surgery. She tells me I'm not on it and will get back to me. Best regards to you. I've only just read your reply sorry.
It sounds like you are on the right track. Wishing you all the best!
Sorry typo thats tpo antibody
Hello again Greekchick my thyroid function test results should have read: tsh 1.4 not .08 (range 0.5-5.5. Ft3 5.2(range 2.7-6.1) ft4 9.2 (range 11.0 - 22.0) it might make a difference do you think?
Don’t think it makes a difference - TSH is still in limits.
OK thanks
Hi I had a multi nodular goitre which started to grow downwards. If it wasnt for it growing downwards I would have preferred to go the non surgical root. I had no choice though, my operation took 5 hours, my parathyroids were damaged and nearly 2.5 years later still not working. On calcium supplements. Took me a long timd to recover from op. Please check your surgeon out and find out how many ops he's carried out and that he's got lots of experience. My advice to you is if your goitre is not interfering with your breathing in anyway, do no have it surgically removed. I hope you make the right decision for you xx
I'm working on it thanks carroll998
shawsAdministrator
I certainly wouldn't say a total thyroidectomy is simple. It could be regarding its removal but it is the aftercare which is very, very important as few doctors appear to be knowledgeable about how best to bring good health back to the patient.
If you have any problems, at least those on this forum who've had the same operation will be able to support/advise you.
As others have mentioned the complexity of surgery depends on the size of your thyroid and whether the gland has extended down into your chest or is pushing on other structures such as the trachea or oesophagus. Your gp is not a surgeon so can’t really comment on the ‘simplicity’ of the surgery, only the surgeon can give you that information. So I would suggest that no you can’t trust your gp!
Try and research your options before agreeing to surgery, and ensure you are referred to an experienced surgeon. I’m not sure if you are in the uk, but in the nhs the surgeon has to inform you of his/her statistics for complications from surgery and what the national statistics are. Good luck.
Hi cjrsquared . I live in Australia. Medicare pays for it all. I Dont have much choice of surgeon. And this one didnt look at me once when we were talking. He was too busy writing. And when I asked him about his complication rate he gave me the national one which I already knew.
It doesn't sound as if he fills the patient with confidence before the surgical procedure.
That's what we really need, confidence that the person will do his/her utmost whilst reassuring patient and explaining how operation is done simply. Also, and most important, what is the aftercare and can options be prescribed if patient is struggling?
I asked him if he liked his job.
Greekchick knows her stuff
But generally, no, you shouldn't trust your GP. He or she did Three pages on the thyroid in med school and probably sees on Graves patient a year.
Most endocrinologists know less than they should.
What is sure is that you don't have much of a choice about surgery but GP is not qualified to outline your risks.
I think you wouldn’t need to ask this question if you trusted your GP. As far as thyroid issues are concerned (or a lot of other things to be honest, it’s important to be informed about any condition you have or treatment you face in my opinion), I wouldn’t trust mine to have anything but the simplest approach - because GPs seem to think it is simple!
There are lots on here that know more about TT than me (and probably your GP) so their advice and experiences will be a great help.
Good luck. 🤸🏿♀️🥛
Your GP isn't doing the surgery so doesn't really matter what he says, find a good surgeon and trust in what he tells you !
I think your doctor should go get thyroidectomy and see if it's easy...what is wrong with doctors.
I had thyroidectomy and my surgery was a breeze. My battle has been trying to get back to feeling normal. I just go with the flow now.
Just shocked at the cavalier reference to "Simple surgery" - not had it myself, but anyone with a ounce of common sense, would say it was far from simple, if anything it is complex before, during and after.
Some good advice here and sending you best wishes and a speedy recovery. for when you have it done.
Take care 
Thank you. I Dont think I will after this lot. Great advice. Keep it coming.
You take care of you Fiaxseed,
I know it must be a worrying time. We are all here to support you and each other.
Keep in touch and let us know how you get on. x
Oh what a jollydolly you are Jollydolly xx
Ha Ha - I think more dolly than jolly these days xx
I had my TT done over 4 years ago. I was so worried before I had it done. I was so lucky I had a very good surgeon everything went okay on the day and I was discharge from hospital the following day. 4 years on I’m doing ok with my medications and no one can see the cut on my neck. I wish you well.
Hi Boltie. Did you know the surgeon was good before you had it or after ?
Yes, once I met him during our consultation appointment, I read upon him by doing google search on him. I check how many TT operations he performs every year and his years of experience performing this type of surgery. My surgeon was doing 100-200 similar surgery’ yearly.
Personally, I find HealthUnlocked has a good source of getting good information. it was the first place I returned to after my TT and I was very happy with the advise and support I got. I even signposted my GP to this site because at this point I didn’t want to leave my recovery to guesswork. Should you have it done, know that everyone will have different experience.
I wish you all the best.
Fiaxseed, the part I'd be most worried about is how you will cope afterwards, and whether you'll have access to a compassionate and knowledgeable doctor to dose you.
You may be lucky and do well on thyroid hormone replacement, or you may be one of the unlucky ones (like me) and really struggle or be disabled afterwards. Another probably larger issue is that you might be capable of doing well on replacement hormone but have a block head doctor who won't dose you properly.
I've been dealing with blockheads for over 40/years. Silver Avocado.
I'd hate to lose my grit that's all. Xx
If you are getting browbeaten by doctors on this subject (or any subject), make sure you take a witness with you to every appointment, and make sure the witness is a) on your side and b) well briefed on the issues and consequences of various actions and alternatives facing you. It also helps if the witness is male. I know that sounds dreadfully sexist but then doctors are sexist.
If you want a belt and braces approach to this, then as well as a witness it is worth recording appointments too if you have suitable, discreet equipment.
Regarding thyroid nodules, have you read this link? I've had no feedback so I'm not sure if it is any good.
healthunlocked.com/thyroidu...
Just charging up my phone humanbean then I'll have look and you are oh so right with the rest. Xx
Still reading that link humanbean.
I accompanied my elder father to his primary doctor & his doctor asked my Dad for permission to tape the visit each time. The doctor was taping with google glasses. Whether or not my father said yes or no I could see a small light in these glasses on (behind doctor’s ear). The discussions often dealt with driving. Anyhow some doctors in the states are going the taping route too.
I'm just imagining a scenario where the patient goes into an appointment, tells the doctor that they don't have permission to do any filming, and if the doctor pretends that they aren't filming the patient puts their own Google glasses on and starts recording. It could be quite funny.
Any head/neck surgery requires considerable skill and a master in the geography of the structures within and of course care for the patient.
Preferably find out (as others have suggested) how many of these ops the surgeon has done and any other information. Is there some sort of patient liason at the hospital who can be onside with you about this?
Maybe I would be looking for a surgeon with a fellowship in his speciality discipline/surgical school.
Humanbean's suggestions are good. Isn't it ludicrous that even if you are a normally assertive person we can be reduced to mute silence or "give in" to some people who wield authority like a weapon. They know this too 
Power To The Patients!
I like it! 
I had a TT due to thyroid cancer, and as others have said, a GP can not comment on it, they don’t have a clue! Even with the aftercare they are pretty clueless. Stick with a Head and Neck consultant and you will be fine. Not gonna lie it’s not the most pleasant of experiences but it saved my life. I hope you get on ok xx
If the OP has private health insurance (in Australia), it should be possible to choose her own surgeon/specialist (assuming chosen surgeon/specialist is available etc) . I've never had an issue with specialists but if I did, I'd go back to GP for a different referral.
Me too 🤗
Why are you having it removed? I have had mine for over 12 years and unless it becomes bigger or develops into cancer I am keeping it because I know the trouble some members have on here keeping their thyroid levels at an acceptable level when taking artificial thyroxine or levothyroxine which is the name of the drug they take after they have had their thyroid removed.
I've got no idea why they want it removed and I'm in the process of finding out e axactly what the problem is instead of just doing as I'm told. Thank you lara7again. All I know is its a multinodular goiter. Gp says (on surgeon referral) with a risk of thyrotoxicos.
You may find the following link helpful:-
healthline.com/health/multi...
Thank you shaws. No cancer has been detected. They just haven't ruled it out. Look and see stuff I guess.
Hi,
I had a total thyroidectomy 18 months ago. I wish I had had it done sooner to be honest. I had had a multinodular goitre for just over 20 years. As I had left it so long it had grown substernally and I was unable to have surgery at my local hospital and ended up in theatre for 9 hours and having a sternotomy to remove the goitre. Due to the difficulty removing it and the length of time that I had left it before having surgery my left vocal cord was damaged and I now have a paralysed left vocal cord. I feel if I had had it removed at an earlier point this would not have been an issue. Speak to your endocrinologist to get advice on their recommendations but if they advise surgery I would not leave it for such a long time as you are more likely to encounter problems with the surgery. Having a goitre removed when it is not too large seems a better option.
So sorry Millie-jane. That's in the back of my mind too. Xx will do as you suggest thank you.
Hope it all goes well for you x
I certainly wouldn't call a TT simple! Mine took 4 1/2 hours as in the week before he was going to remove half of the thyroid ..it upped and destroyed itself, was like a stone when removed along with one parathyroid, and sticking to my pharynx! However he must have been good at what he did, as I recovered well and was fine for 10 years on my 150mcg Thyroxine. That was until the numpty gp since moving here to Kent told me my THS should be at least 4 - 5! Have changed practice now and still working on getting back to where I was. Suggest you remove said gp's thyroid with a spoon and say there that was simple wasn't it. Good luck with whatever you decide!
Fiaxseed, I find it rather strange that a GP would be telling you that you need surgery.
Especially seeing as how GPs don't do thyroidectomies, at least not in the developed
world.
You need biopsies to determine if the problem requires surgery.
It's not a simple surgery because the parathyroid glands need to be saved
and some surgeons screw it up.
Thank you gabkad. I'm onto getting a copy of the surgeons report. He must have done it by now. Until I know why I'm having it. I ain't having it. X
I must add that my gp's husband is a surgeon and anything bigger than it should be has to come out. (Just my thoughts mind)
Have they performed a biopsy?
You also should take someone with you to appointments.
That way possibly information is not being missed.
Yes gabkad all done. Plus scans. Thyroid hasn't changed since 2014. I believe the swelling was caused by too high a dose of carbi.
And if i may add- the surgeon noticed the speedy change in function. Because i showed him a copy of results
But I Dont think the gp knew what they meant when she got the results back 2weeks prior. I'd been a mess for over a month. Then my neck swelled.not much tho. My symptoms were worse.
Even experienced ones screw up I know. And funny enough- my go didn't tell me I needed surgery. She just looked at the swell (Inflammation) and said. That has to come out. No sound clinical reason for her judgement. I believed her though. Because she's a gp and they wouldn't recommend unnecessary surgery would they?
I observed a very memorable experience as a hospital float ward clerk while a student. A older man was admitted to be circumcised, I did not know why. This took place before outpatient surgeries. Easy slam dunk surgery right? He ended up in the coronary intensive care unit afterward. It goes to show how important it is to avoid unnecessary risks, & to always be in the most experienced hands one can find.
Yes. Its the word unnecessary surgery that concerns me. My gp has a sneaky way of pushing me towards it. One Direction.
And besides- if thyroidectomy is simple surgery as gp said, I wouldn't need to ask all those question about the surgeons experience etc. I'd just okay then let's do it. I think gp thinks I came here on a banana boat.
In general I think doctors lean either toward a medical approach to health problems or lean towards a surgical one. There are two camps. A medical patient on a surgical floor is a “boarder” & vice versa. They are sent back to their respective areas as soon as possible. Tradition in the states.
Your Endocrinologist still may view you as a medical patient. Your General Practitioner seems more comfortable viewing you as a surgical patient.
I recall a story about the famous Kennedy family: A son messed up a shoulder. The old man took his son to three different surgeons who each recommended surgery. He then took his son for a fourth opinion & the surgeon said it would heal itself. He followed the advice of the last doctor & his son’s shoulder did heal itself.
Knowing what to do is hard, especially not having all the money the Kennedy’s do at your disposal.
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