My daughter (aged 41) has been taking carbimozal for a number of years but continues to have poor sleep, palpitations and low mood. A consulatant has told her that she should have her thyroid removed, but has also said tht this will lead to kidney problems and possibly failure in the long term. This has really scared her. She has resisted having surgery because of the risks to her voice as a singer but really needs to move on with her life and face the challenge.
Your advice and encouragement would be most welcome
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Drummer590
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How is doctors suggesting Thyroid be removed? Surgically or with radioactive iodine by “remove” I assume surgery?
It’s true either treatment will almost certainly going to cause hypothyroidism, but unless there’s something I don’t know about her health. If being treated adequately while hypothyroid (with hormone replacement) there is no reason to expect kidney issues. Kidney issues can be affected by hypothyroidism but this is rare.
Doctors often push for definitive treatments because the view hypothyroid easily treatable (most find it straightforward, but not always)
Doctors don’t like patients on carbimazole as specialist monitoring is expensive.
Sometimes it’s implied carbimazole a. “damage bone marrow” or cause liver issues.
Carbimazole is not risk free there is a very small possibility of rare side affects, but is a rare reaction & the length of time is not relevant. The risk is same throughout treatment.
If she still having symptoms is the carbimazole dose appropriate for her levels.?
Doctors often go by TSH (a pituitary hormone) it’s usually low when thyroid hormone high, & high when thyroid levels low. but the TSH is extremely unreliable and if taking too much or too little carbimazole she will have symtoms.
What are her results. She is Legal entitled to see them.
Her hyperthyroidism was undiagnosed for some time only being noticed at the age of 22. She is sure tht it was caused by the over prescription of SSRIs in her teenage years to treat depression: most notably Fluoxetine.
The consultant is proposing a thryoidectomy. Her results are available online, but she has not presently accessed her online notes.
She says her Carbimozele is stable and appropiate and has been for 6-7 years. She is on 15mg per day. She is determined that her SSRI treatment was a major contributor to her hyperthyroidism and that trials that showed this were hidden/destroyed
hello there, I have graves disease(diagnosed 2018) and have been on carbimazole since then.For a number of reasons I had a thyroidectomy in June 2022.I feel much better and up to now am doing well on levothyroxine.I have kept my profile updated along the way so if you care to read how and why I came to my decision just click on the picture at the side of my name and it is there.You say your daughter is a singer.I would just say that my voice is slightly different, a little husky and not quite as strong.That doesn't bother me and may not be the same for her but may be something she needs to ask about.Best wishes to you both.
I had a full thyroidectomy just over a year ago and I’ve never felt better. I had graves which was difficult to control on Carbimazol and I then went on Propylthiouracil. Since it came out my day to day life is so much better and it’s far easier to maintain on levothyroxine.
It took me a while to decide on surgery and I can understand your daughter’s hesitancy, but for me it’s been the best thing I could have done. My work and personal life is so much better and theres no daily battle against symptoms and illness.
The surgery did affect my voice for a few weeks but within a month or so it was back to normal. I think they use a sensor to monitor the vocal cord during surgery but that’s a question I’m sure the surgeon can help with!
I had a thyroidectomy almost 7 years ago and my kidneys are fine as you get older its not uncommon to start seeing a “reduced” kidney function does your daughter have kidney disease?
I have chronic kidney disease and had a thyroidectomy in 2017 my kidney consultant never suggested it would cause any issues for my kidney's and there has been no change in them since thyroidectomy so I don't understand why your daughter was told that.
Hi, I was on Carbimzaole for an overactive thyroid/Graves disease. Towards the end (c3 years on the tablet), I started having a sore throat with it. I was also completely exhausted most of the time. I spoke to the Endocrinologist who advised there was a risk of staying long term on Carbimazole as there was a risk of osteoporosis with it. I was given choice of Radiactive Iodine or a thyroidectomy. I decided on the thyroidectomy as my gran also had Graves disease. My gran took the radiative iodine, it 'missed' the first time and she had to have it a second time so that put me off. The operation seemed somehow 'cleaner' to me as I was also scared of ingesting something radioactive.
Due to Graves disease, I had to have a total thyroidectomy else the Graves would continue to attack what remained of my thyroid.
The surgery itself is not as painful as I feared. However, there are risks which the surgeon will discuss. There is definitely a risk of voice damage as the thyroid is near the vocal cords. My voice was a bit strained for months after the operation. Even now (over a year later) my voice can still sound tight on occasions particularly if I am tired. I can no longer shout and my singing voice seems to have vanished. There are other thyroidectomy risks including a calcium risk and parathyroids glands which a surgeon would be better placed to explain. The scar left on the neck is not that bad and mines is healing fairly well. I am more aware of the scar than other people.
I was not advised any risk to the kidneys.
My surgery was somewhat complex. I was on the operating table for over four hours. The surgeon described my thyroid as being in a complete mess and it was 'sticky'. A small cancer was found after the thyroid was send to pathology. However, the operation caught the chance and I needed no further treatment.
Graves is incurable - although the thyroidectomy prevents the thyroid being attacked. Six months after the operation I had to have my new meds adjusted as some of the Graves symptoms flared up again like running to the loo constantly and heart concerns. Like Carbimazole, the new medication (Levothyroxine), needs blood tests and monitored. Not as frequent as Carbimazole (I felt like I was never away from the doctor with Carbimazole testing and I was worn done having constant blood tests).
All in all, I am glad I had the surgery. Otherwise the cancer would not have been found as early. A surgeon will explain all the risks and an endocronologist can also discuss the merits of radiative iodine.
I still suffer from fatigue and this is something I am discussing with my doctor. This may well be symptoms of hypothyroidism now rather than hyperthyroidism.
Had total thyroidectomy 2 years ago after 7 years on MMI for Graves. Since the thyroid has been out, I feel better in the sense that I'm not as frantic internally as I was while on Graves, and my eyes have improved (not 100% back to normal but much better than while hyper.) Been on T4, then T3 only, now T4 + T3, and I find it takes a while to find balance. My biggest gripes have been the +10 lbs vs weight at surgery, despite sustained efforts to stave off gain, and the fact that my GERD appears to have worsened since thyroid removal for some reason. Also, in regards to voice: I was that one in a million who DID have laryngeal damage due to surgery. The RLN was damaged, I lived a pure nightmare for 24 hrs before I was given a laryngeal injection (a Spanish Inquisition type procedure, but it did help me get better.) The damage to the RLN was thankfully temporary, and the nerve got back to full normal in 3 months, but those 24 hrs post-surgery I'll never forget: couldn't eat, drink, speak, couldn't even cry about it, because if the nerve that innervates one side of the voice box is paralyzed, the voice box stays open, and apparently it needs to close for you to be able to cry. This whole ordeal gave me infinite respect for the human body and for incredibly it is put together. Good luck to your daughter.
We are looking at an auto immune disease, and it is a poorly understood and badly treated and simply swopping hyperthyroid for hypothyroidism and having to be on medication for the rest of one's life is a big commitment.
If well on the AT drug there is absolutely no reason why your daughter can't continue on this path and i believe it all comes down to the symptoms being suffered and if intolerable and one's life so compromised I think we all would look for a way out.
Most recent research is suggesting the longer the AT drug is prescribed the better the outcome for the patient :-
I'm with Graves post RAI thyroid ablation in 2005 and deeply regret this treatment - though offered nothing else and told the AT drug was too dangerous to stay on long term,
I was well on the AT drug but drank a toxic substance instead -
I now manage lingering Graves thyroid eye disease and hypothyroidism and self medicate buying my own full spectrum thyroid hormones as I was refused any treatment options through the NHS .
Why oh why are we still offering RAI thyroid ablation in a health care setting anyway ?
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