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.