Thyroid Surgery

[krystalllrose]

Hi everyone, I posted a few months ago about how I'm struggling to get my hyperthyroidism under control with carbimazole. I am based in New Zealand and have been taking carbimazole for 3.5 years and my levels have only gotten worse over this time. Endocrinology won't see me until my levels are normal which doesn't make sense to me, so treatment is through GP. as advised by a few on here, I asked to be switched to PTU. endocrinology told my GP no as it takes longer to work and comes with more severe side effects. I would think I'd be better of trialing something else with the chance for it to work slower than staying on carbimazole which hasn't worked at all over this time and makes me extremely nauseous.

I am fed up with waiting to get my health back to normal, and contacted a private endocrinologist/thyroid surgeon who said surgery would be a good option as the hyperthyroidism is caused by a toxic hot nodule and therefore a hemithyroidectomy would get me to a euthyroid state very quickly. He said that with my heart rate and high blood pressure being controlled with propranolol it would be a very low risk procedure and the risk of thyroid storm is also very very low. He mentioned that the worst thing public can do for me is nothing which is essentially what they're doing.

Only thing is, public refused surgery and private will cost me $20k. Im 24, I don't have that kind of money spare but I don't want to stay on medication that doesn't work for the rest of my life while my health continues to decline, and I don't want to wait around for the public health system to do something when currently they won't even see me. I don't even really know what I'm asking I just don't know where to go from here.

(for anyone confused, we have a public system for everyone which is free however there are quite long wait times for any elective procedures. There is also a private system where things like this can be done very quickly however are expensive without health insurance which I don't have. if I were to pay health insurance for a pre existing condition id need to pay a 3 yr plan first at roughly $80pw and they can still deny cover to the pre existing condition there is only a review after 3 years)

[pennyannie]

Hey there again :

I simply do not understand and can only repeat what I wrote previously - maybe take someone supportive of your wishes to appointment as it appears you are not being heard - is this a new doctor, can you see a different doctor ?

I do not know what the guidelines are in New Zealand and suggest you research excactly what the treatment regime is in your country - though we have helped others from New Zealand and thought your guidelines similar to the UK - and on which my reply is based.

I think you need to insist on being switched to the PTU -

it reads as though you have tried this Anti Thyroid drug before so I don't understand why you can't try it again -

with both Carbimazole and PTU publicly funded - and with a surgeon having no reservations should you be being treated with PTU.

Again, I can't understand the public health system not allowing you a thyroidectomy - while at the same time making no effort to help you get your thyroid hormones under control.

It is better for everybody if your thyroid hormone levels are down prior to surgery -

but the reality is people elect to have a thyroidectomy when they have exhausted both Carbimazole and PTU treatment options - and left with no option - but a thyroidectomy.

Your request to try a different Anti Thyroid drug is not unreasonable and the next logical step - after Carbimazole and if PTU doesn't work the only other option is a thyroidectomy - however high your thyroid hormones might be.

[krystalllrose in reply to pennyannie]

Hi thank you so much for your response and sorry it’s taken me so long to reply.

I had a look through old medication and I think my old doctor who said she was prescribing PTU actually gave me Propranolol so I’m not sure I’ve ever even tried it. I know carbimazole is first choice in NZ but even then I can’t understand why I can’t try PTU since carbimazole clearly isn’t working.

I have just switched doctors as my last doctor hasn’t been helpful over the last few years and my current one seems to care and want to help but also won’t prescribe anything else without approval from an endocrinologist and they won’t see me till my levels are down so I’m just going round in circles at the moment.

I do usually bring a support person to appointments, and am trying to advocate for my health the best I can but it’s very frustrating going back over and over again while ‘treatment’ stays the same and my health continues to get worse. I will definitely research NZs treatment guidelines though and bring them up in my next appointment. Hopefully that will help.

I don’t understand it either I truly feel like I’ve been completely neglected.

It makes sense that surgery will be safer with my levels down but I can’t wait forever and the longer they make me wait the higher my levels are getting.

Thank you so much again for your reply ☺️

[krystalllrose in reply to pennyannie]

I have just read the Christchurch district health board’s guidelines and there aren’t any specific guidelines for toxic hot nodules. The only time PTU is mentioned is for treatment in the first trimester of pregnancy.

[pennyannie in reply to krystalllrose]

In the Uk - PTU is automatically prescribed in the first trimester of pregnancy -

and also offered as an alternative to everybody suffering with Graves and hyperthyroidism when Carbimazole - the first line treatment - does not work well for the patient - which is where you are -

Most treatments have second line options and this applies to AT drugs -

first line treatment is Carbimazole - followed by Proplythiouracil - PTU :

[pennyannie in reply to krystalllrose]

Guidelines are just that - and there is an option when the guidelines don't work well -

We have other forum members from New Zealand who couldn't tolerate Carbimazole and were switched to PTU - maybe the doctor needs to get sanctioned by endocrinology - I don't know -

I think there is a FB thyroid support group networking in New Zealand - maybe try asking some more local people ?

[krystalllrose in reply to pennyannie]

Yes that’s exactly what I thought. PTU is used when carbimazole can’t be tolerated or isn’t working. I’ll keep pushing for it at each appointment though and hopefully can end up trying it. Thank you I’ll check it out.

[pennyannie in reply to krystalllrose]

Just checked with some one in NZ and she did not get on well with Carbimazole and in a similar position and had to fight her corner and insist she try the alternative - PTU - Propylthiouracil -

I'm so sorry as you really do not need the extra stress all this may cause you :

Maybe an endo at the hospital needs to sanction this medication ?