Should I have a thyroidectomy?

[TheJoyousExpert]

Diagnosed with Graves’ disease / autoimmune thyroid disease in Feb - suspect I’ve had it for longer.

I’ve been really ill with it - extremely weak, shaky legs, unable to stand for long, racing heart especially standing, palpitations extreme fatigue severe depression and anxiety, brain fog, nausea, and feeling really unwell in general.

i had a few issues at the beginning of treatment. Carbimazole made me feel sick to begin with so was put on PTU which unfortunately caused elevated liver enzymes (can be quite dangerous with PTU).
back on Carbimazole now for around 6 weeks on a low dose. I think it’s starting work a little now but I have been referred for consultation with a surgeon to consider thyroidectomy.

my worry is that this will come back one day. I have been so unwell, I’ve basically dropped out of life for the past few months.

I cannot decide whether thyroidectomy is the best solution.

if anyone has any experiences, I’d be most grateful to hear.

If you have a thyroidectomy, those symptoms can't come back.
However you will then need to take levothyroxine for life, as you will be hypothyroid. But you would also be entitled to a medical exemption card, so free prescriptions.
I really really struggled on levo, so I ssource and pay for my own NDT (natural dessicated thyroid made from pigs/cows) and do much much better on that. it is very very hard to get NDT prescribed unless you pay a private endocrinologist and for private prescriptions. Which is expensive.

I took that decision, exactly because the Graves reocurrance rate is so high with other treatment and I really felt horrible. It's been I think 13-14 years now, no issues.

Thank you @Usernamesarenoteasy and @DecafDodger - really appreciate the replies.

thats the thing I’m concerned about - how I will get on with the levothyroxine.

but with the issues I’ve had with the antithyroids etc I feel I don’t have much choice

My mum did many years ago and has been fine on levo ever since
I still have my (dicky) thyroid but have also been on levo for ever- never had a problem with it

I had Graves and wanted a Thyroidectomy too but Consultant said I was being too hasty (and I was impulsive anyway due to the condition). Took PTU from April to September (and was given betablockers) and went slightly hypothyroid so they took me off PTU. I've been in remission now for 17 years.

Have you been referred to Endocrinology?

Or is your GP managing this?

I had. Thyroidectomy some years ago, & have struggled with levothyroxine, often my blood test says I’m over medicated, but without it I feel wretched, tired, overweight, dry hair, brittle nails etc, I’m not sure the tests are accurate to how I’m feeling, GP’s often very dismissive of symptoms, wish I’d never had the removal done!

Why a surgical thyroidectomy rather than radioiodine treatment? I had radioiodine therapy 18 months ago and it was so straightforward. Other than having to keep my distance from other people for a few weeks, it was so much easier than surgery.

Rampant Graves which, like you, I think I'd had for years.

It was diagnosed just as I got engaged and I was 31 and we wanted to start a family. I was not persuaded by the radioactive iodine option and didn't want to have uncertainty whilst starting a family, so seeing if I went into remission after a course of carbimazole wasn't an option.

I had a sub total thyroidectomy and it was fine. I was back at work after three weeks. The scar was very faint within a year.

I have been on Levothyroxine without issue for 34 years. Babies, menopause, etc., all fine.

I was advised I had to keep my distance from others to safeguard their gonads. When I asked "what about my gonads" no answer was forthcoming.

Had I completed my family, I wouldn't have hesitated. I think I have read somewhere that they no longer recommend it for those who are planning to have children.

Having your thyroid removed won’t cure Graves’ disease though.

I was advised to avoid pregnancy for 6 months following treatment. It seems to be safe to get pregnant after that time.

If you no longer have a thyroid or only one eigth of one, you will no longer have an overactive thyroid. Therefore the Graves is cured.

Hypothyroidism will inevitably develop but that's easier to treat.

4 months is no time for carb to start working OP. It can take well over a year for levels to come back within range. Having your thyroid removed should really be a last resort. What are your current levels? Have you got copies of your blood tests and can you read and understand them? What were tour TRab levels when tested for Graves’ disease? There is an excellent Facebook page that can help called Graves Disease UK.

If you have your thyroid removed, make sure it’s what you want and your consultant isn’t forcing it on you or scaring you into it. Having surgery can be seen as a cheap way to get you back to the care of your GP and out of hospital care.

There is no cure for Graves’ disease. It can go into remission but it cannot be cured.

I had a full thyroidectomy almost three years ago, after a long period of illness (not Graves).

I’m doing fine on Levo. Have a blood test every six months and my GP adjusts my dosage as needed.

I did struggle with post-surgery recovery, though. It thought I’d be back to work after four weeks but it ended up being closer to four months. I think I was just so rub down from being sick that my body really struggled with the surgery. It took a good year for me to start feeling normal again.

I was on Carbimazole for over a year after a Graves diagnosis and have now been in remission for about four years with annual blood tests through my GP. I was also prescribed beta blockers for the first few months and I feel that they helped with a lot of the symptoms.

Try to give the Carbimazole a chance if that’s an option, if it puts you in remission then you have avoided the operation (or iodine treatment) and a lifetime of medication. I wanted this to be an absolute last resort if the Carbimazole didn’t work.

Like a previous poster said, make sure you get referred to an Endocrinologist. I had regular blood tests so they could adjust the strength/dose and gradually went down to nothing. I hope you begin to feel well soon and do a lot of your own research.

I would go RAI in the first instance, if you can.

I had mine done a decade ago as I wanted to have more children and couldn't get my Graves under control with the antithyroid meds. It's been fine; I've had 2 more children and the levothyroxine is manageable, slightly annoying though as my levels of that still need adjusting periodically.

If you have time up your sleeve before needing to commit to the surgery, you could consider looking at some other treatments to try to get to the underlying causes of your Graves flares. I do sort of wish I had done that first, as now (with the benefit of hindsight) I have realised that I am susceptible to autoimmune disorders, of which Graves is one, and there are other treatment options to explore (those that aren't medical, surgical) that for me have been really helpful for some of the others. I do also wonder whether not having a functional thyroid has contributed to me developing further autoimmune issues and/or struggling to resolve them easily.

It is of course impossible to know whether things would/could have been different. And as I said the surgery and levo has been fine/manageable and I have my gorgeous children and who knows how things would have turned out - there's no crystal ball. But in an ideal world I would prefer not to be in a situation where I'm reliant on daily meds.

Fwiw, if you're interestrd, stress has been a huge factor in the development/management of my later autoimmune things. And they are much better / manageable when I get my nervous system back to a state of calm. Acupuncture,Osteopathy, Chinese medicine, diet, exercise, meditation, reducing work and other life stressors have all been very useful for me in managing autoimmune things.

Best of luck OP x

@BuckBeekle there really is no "natural" resolution to Graves/Hypothyroidism. They require medicating.

@TheJoyousExpert it is essential to see an endocrinologist - if you can't on the NHS, then pay if you can. Also there is help and support available from The British Thyroid Foundation. Finally, it's an op that needs to be done by a surgeon experienced in thyroid work.

Thank you all very much for the replies - really helpful 😊

I am under endocrinology at the local hospital and also, have seen an endo privately too. I think because I’ve found the medication tricky with me now unable to take at least one of them (there’s only 2 meds available), they’ve suggested definitive treatment.

In all honesty, I’ve found the endo department to be pretty poor in terms of support 😔

I’ve done lots and lots of reading since I was diagnosed in Feb - British Thyroid Association, HealthUnlocked etc.

i think because I’ve been suffering for a number of months, at first didn’t see any improvement with meds etc it has felt like I’ll never get better.

I don’t want to be hasty and remove an important gland, but at the same time I don’t want to go through this again. It has felt like a serious illness (when in the grand scheme of things it’s not considered to be). I understand it won’t cure Graves’ but it will mean that my thyroid can’t misfire, I guess.

Thanks again everyone 😊

Hi OP, is a partial thyroidectomy being offered as a treatment? I had this almost 40 years ago and it was a complete success, but I don't know if it's still considered.

I was 21 when I got Graves - last year at Uni and my life was turned upside down. I had the partial thyroidectomy (I think 90% was removed), went on to get a 2.1, and have been completely fine since. The gland that was left re-set to the right levels and I don't even need to take thyroxine, although I still get a blood test twice a year (once a year until I was about 50) to monitor my levels.
I'm now 60. I have a scar that no-one notices.
Could that be an option?

just to add, the surgery was long, a 5-hour operation, and recovery was complicated by the fact that I caught pneumonia in hospital (un-related to the Graves!)
I now have 2 adult children.

For pp who asked about the iodine - in my case, we had just started to TTC when Graves hit, so I was not comfortable with that option. Otherwise would have considered.

I was diagnosed with Graves aged 21 (long family history so when I got ill I knew what it was straight away). Tried Carbimazole but relapsed as soon as I came off it and had RAI aged 25. Taking levo ever since and find it super easy and feel really well on it. I got pregnant super fast with DC1 last year, so no impact on fertility for me (the effects are gone within 6 months I understand).

My mum and my aunts all had thyroidectomy and all manage really well on levo- the GP says my mum's TSH is a bit lower than they'd like but she feels hypo if she has a lower dose so they treat for her feelings and symptoms rather than strictly the hormone levels. You can have a totally normal healthy life and not worry about it coming back, and get free prescriptions, so it's win-win in my experience