Hi, I'm due to have a thyroidectomy for Graves next week and saw on another post, from someone who kindly recounted their experiences about their thyroidectomy, that people often bitterly regret agreeing to a thyroidectomy for Graves.
I would love to understand why please?
thank you
Not everyone will regret it, I should think most do not & it’s the right step to recovery. This forum is where those having difficulties visit for help.
Part of the problem is that patients are lead to believe once surgery is done it will be a “quick cure”. Once you are treated you are discharged to GP as Drs view hypothyroidism as easily treatable.
It’s not made clear it can be difficult to balance & optimise levels, sometimes treatment is more complicated after Graves & surgery.
The testing is not always complete eg focusing on TSH and patients are left under replaced long term & unwell, sometimes more unwell than before surgery but told they are “in range”.
Surgery isn’t reversible so it’s understandable why many would feel negative about it.
Having knowledge & advocating yourself to ensure you have the right tests & guide your own treatment means you are in the best position to avoid those issues.
Thank you PurpleNails great advice and I will make note of this and educate myself on this 🙏
so . first do bear in mind that there isn't a forum for people who feel well on levothyroxine ... cos they don't need one....... they just take levo , get it to the right level to prevent symptoms of hypothyroidism which can take a few months to a year to get right , and then they carry on with life , with just annual monitoring / occasional dose changes as needed.
The group of people you find on here are only those who have problems on levo and don't feel well . For the sake of argument ,lets say that group is about 15% of all those who take levo for hypothyroidism . (that is a pretty universally accepted figure and is referred to regularly in research papers .... many of us on here suspect that the true figure is higher )
once you have had your thyroid removed and are taking levothyroxine , you may or may not find yourself in this '15%' .... but there is obviously a 15% risk you may be, yet most people are not told about this risk by their consultant at the time they are discussing risk / benefit of having a thyroidectomy .
from what i've seen from reading on here over the last 5 years, the majority of people who regret a thyroidectomy (or RAI ~destruction of thyroid by radioactive iodine) regret it due to the difficulties they have with thyroid hormone replacement / and it's monitoring / and the dismissive attitudes of doctors when they report they don't feel well on it ~ rather than any problems from the operation itself such as vocal cord damage etc.
if they were managing to function ok and felt reasonably well on low dose carbimazole/PTU to control graves , and then after having thyroid removed they feel much less well on levothyroxine , such that it seriously affects their work and private life.... they wish they had been told of the risk that levo might not give them a decent qaulity of life , and are angry to find out later that there was an option of staying on carbimazole/PTU long term that they were never told about.
some people obviously cannot stay on carbimazole/PTU long term as they feel lousy on it, or they react to it ,or they came of it and thier graves was in remission but it keep relapsing multiple times and they want a permanent solution rather than stay on the rollercoaster .... so for some people thyroidectomy / or RAI is their only real choice ..... but for those who were doing relatively ok on carbimazole/PTU and only agreed to thyroidectomy because a doctor told them "this is what will be happening next in your treatment "... and then they find their life is not put back to normal by just taking levo , well they are angry and feel cheated .... and when their GP tells them , " well your thyroid blood test are now in the normal range on 'x' dose levo , so i don't think the problems you have now are due to your thyroid hormone replacement, shall we try you on an antidepressant ? " .....
or when they find out that treatment with Levo + T3 allows some of this 15% group to function much better , but then to be told that levothyroxine is the only option available to them on the NHS , (even though T3(Liothyronine) IS actually available on the NHS, and even NDT(natural desiccated thyroid) is available to a few but is now becoming increasingly impossible on the NHS.
or to find out that the GP won't refer them back to endocrinology to see if T3 trial improves how they feel , or that endocrinology don't accept the referral , or referral is accepted but endocrinologist won't allow them a trial , or the NHS endocrinologist thinks T3 may help them but isn't allowed to prescribe it on the NHS by his local ICB. etc etc.
so most of the regret on here is about the difficulties people face with levothyroxine in the many years following thyroidectomy rather than any short term issue they had with the operation itself.
The regret is that they felt relatively better /had a relatively normal life while stable on carbimazole/ PTU ,, and now they don't ., and are not taken seriously when they say so .
it all comes down to balancing how well you can function on carbimazole /PTU/ No medication... versus gambling with how well you will feel on levothyroxine.
and making sure you know about all the options available to you before you have gone through with it.
they want people off their books and back into the care of the GP ( on levo) ASAP simply because it's cost effective . They would rather people didn't stay on carbimazole/PTU long term, as they have keep monitoring them in secondary care , so they don't even make people aware that it might be a viable option for some.
And when discussing the risks / benefits of thyroidectomy / RAI , they don't make anyone aware of the "difficult 15% "
p.s just read you earlier posts re. your consultants saying PTU is too much of a risk to even try..... i wonder what % they put on that risk ? ...
how does it compare to the known 15% risk of not being well on levo ? ( which they presumably haven't told you about, and if they haven't ~ what does that say about their honesty where risk is concerned ?)
surely its you, not them, who should be deciding if you are wiling to take the PTU ? % risks... before agreeing to thyroidectomy with it's known 15% 'dissatisfied with levo' risk.
i would want a lot more detailed information about the actual risks of trying PTU in your case , and to be given the option to try it if you were prepared to accept those risks / consequences, before even considering going ahead with irreversible thyroidectomy .
Thanks tattybogle that brilliantly explains why I’m battling to stay on Carbimazole.
Thank you tattybogle that is a great explaination for me!
Thank you xNorthernLightsx for your comments here and in the other thread. I really appreciate it
Great reply tattybogle !
Judy - lots do great, but it is irreversible, and so educate yourself until you are comfortable. The worst part is that a TT is always easier for the DOCTOR. But you are the only one in this whole world who will live with it for your life.
So just educate yourself, advocate for yourself, and don’t be bullied or rushed into anything. Doctors and the healthcare system are prone to that - so always a good reminder! Keep fighting!
Just remember that anyone with overactive thyroid for any reason, who decides they want to keep their thyroid rather than have it removed, cannot be denied prescriptions for Carbimazole or PTU.
thank you Humanbean. I've had carbimazole but induced neutropenia and then was told that PTU would do the same
I think we've discussed this before. Patients who don't get on with carbimazole should not be denied PTU. You might do well on it. Just because carbimazole didn't work for you doesn't guarantee that you would do badly on PTU.
If your doctors won't give you a trial of PTU is a reason to change doctors, not to give up your thyroid without a fight.
Oh my goodness, what a difficult decision for you, do lots of research and make up your own mind as to the best course of action for you.
I have had thyroid problems since I was 11 and am now in my 70's. I almost died as a child due to the doctors failure to diagnose. However, once they did I was treated with a lot of medication (cannot remember what after all these years). I then got really well and felt fine.
Once I got to my 20's I started to feel very unwell again and was told there was nothing wrong with me. Of course there was and after a few miserable years I was finally told 'Oh sorry, it's your thyroid, we couldn't tell because your symptoms were mixed) I was so relieved I went ahead with the op expecting to be well again.
No such thing happened and I have had a lifetime of ill health as a result, if I could turn the clock back I would never have had the operation and, with hindsight, would have insisted on the medication that worked so well.
I had to really fight to get the thyroid problem recognised and it took me years (and a private doctor) to finally get Levo prescribed, and as with so many others Levo really doesn't suit me. It's such a long (boring) story.
Obviously everyone is different and many people have a much more positive experience, but in my own experience the NHS treat thyroid problems very badly. I can only speak from my own experiences with it.
So my take on it would be research as much as you can, talk to as many people as you can and then decide what you think is the best course of action for you.
Wishing you all the luck in the world with it all and remember that not everyone has a bad experience.
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