Can you trust a surgeon who tells you to stop your carbimazole after 3 months treatment and just have it out?

[Fiaxseed]

My thyroid gland that is. When I suggested he consult with my specialist who prescribed it he said: I AM a specialist. How come?

[SeasideSusie Remembering]

Fiaxseed

Surgeons like to cut

I certainly wouldn't agree to having my thyroid removed after only 3 months on Carbimazole. I know someone who has been on Carbimazole for years, she is fine, she knows how she feels and how to adjust her dose if necessary.

What does your other specialist say?

[Fiaxseed in reply to SeasideSusie]

M y gp didn't tell her. I had to insist she did because I didnt feel comfortable stopping. I knew it needed to be reduced. Its been a week and nothing. I stopped carbi 11 days ago. I feel like I've been cheated. I insisted on function test too. I'll post them on here when I get them. Do you think its too late for me and carbi now that I've stopped ?

[SeasideSusie Remembering in reply to Fiaxseed]

Do you think its too late for me and carbi now that I've stopped ?

I'm afraid I can't really answer that. I'm hypOthyroid so have no personal experience of Carbimazole, nodules, etc.

[Fiaxseed in reply to SeasideSusie]

Thank you for your honesty.

[Gymgirl]

No, I wouldn't trust them! That's hardly given the carbimazole any time to work. I've been on carbimazole for 19 months now. And was told it was time to stop, I argued it wasn't but lost that fight, so I have some tablets left, so with what I have left I am titrating down to taking a quarter of a 5mg tablet, everyday then every second day, then third day until I run out.... to give myself best chance of remission. Elaine Moore's website describes the best ways to stop carbimazole and stopping after 3 months to get surgery instead is defo not the way to go. Xx

[Fiaxseed in reply to Gymgirl]

I've got some carbi Gymgirl. I've got a prescription too. If I'd known how to titrate I would have. I'll try to locate that website you mention. I know my body too x

[Hillwoman in reply to Gymgirl]

Gymgirl, it is your right to have carbimazole prescribed for hyperthyroidism, because it is also your right to refuse surgery!

[Gymgirl in reply to Hillwoman]

I've been prescribed it for the last 19 months, have been on 5mgs dose for around 10 months and I've been euthroid for the last 8 months so they basically say I'm ready to stop to see if I go into remission. I wasn't so sure as I had trabs retested and they hadn't reduced by that much. My TrAb levels when I was diagnosed with graves were 4.5, they're now 3.3 (range <1.9). I know this level of antibodies isn't that high to begin with but high enough for it to kick off the graves in the first place. I have enough 5mg tablets to slowly reduce dose between now to the end of December, when I plan to get trab retested again (privately as nhs "don't test that again once your diagnosed"!) and hope that they will be lower again so coupled with the lowering dose of carbimazole it should increase my chances of remission.... I hope!!

[Hillwoman in reply to Gymgirl]

Fingers crossed it all goes to plan.

[Fiaxseed in reply to Gymgirl]

What a great website Elaine Moore. It makes some sense to me now. I had symptoms of hypo after about 2 months on carbi 10 mg a day. it was shown in blood test 3 weeks ago. My gp didn't address it. I got worse and kept going back. My goiter increased in size when it had remained the same ( nuclear scan) since the last one in 2014. That's a fall in the of my stomach. Some gp's just Dont listen.

[Gymgirl in reply to Fiaxseed]

It is a great website, I find the replies in the forum really useful too. I have found similar with gps and endos... you gotta keep a close eye on everything yourself... at points through the last 19 months I definately felt like I was treating myself! Telling Endo I wanted to drop dose when he didn't want me to but I could feel myself going hypo even though bloods "looked good" so I would always say things like... could we trial lowering dose and see what happens... and he would mostly say "yes" just to get me out of the appointment otherwise I would be in there for 30 mins debating the way forward and he basically didn't have time to do that with loads of other patients waiting outside!!

[Fiaxseed in reply to Gymgirl]

Good onyer Gymgirl.

[shaws Administrator]

Following on from Gymgirl 's comment the following may be helpful, plus topics :-

elaine-moore.com/Articles/G...

[Hennerton]

Unless it becomes absolutely necessary for your continued good health, do not let your thyroid be removed. I went ahead with it thirteen years ago, long before I found help like this site. I knew only what my private endocrinologist told me and he was arrogant, uncaring and knew very little about Graves’ disease. I have regretted it ever since.

[Fiaxseed in reply to Hennerton]

I think that's what I'm afraid of - regretting. And yes you're right- unless its absolutely necessary for my continued good health. I like the sound of that. Best wishes from Australia. X

[Fiaxseed]

Wow. The surgeon just poked his nose in. And told me what to do. Is that arrogance or what ?

[pennyannie]

Hey there Flaxseed

I'm so sorry, your last couple of posts show you to be at odds with the " professionals ".

I think your best bet is the endo who prescribed the carbimazole and who expects you back to see him intact and with your thyroid.

He seems to be taking a more cautious, long term view of your current thyroid issues.

I appreciate getting to see him isn't as simple as we might experience, but surely your doctor should acknowledge you are not ready for such major surgery and that your request to be seen by the endocrinologist who is in charge of your care as sensible and precautionary, which I'm sure she would do, put in your position.

Again, I ask you, is there another doctor, though I appreciate this is a difficult ask, especially when " stuff " is going on.

[Fiaxseed in reply to pennyannie]

I'll try change doctors pennyannie. Because according to hospital records the endo still doesn't know about my lastest function test results. Very bad practice in my opinion.

[Greekchick]

Hi Flaxseed, I answered your previous post from yesterday - and the comments below cover what I would have said about your question today - I took a look at your last posted blood work (I reposted it so others would see it too if they want to respond) and other previous posts before answering. I wish I still had my own thyroid but it was not meant to be for me. But in your case, I would not rush or be pressured for any reason. You have gotten some excellent advice below about titrating your carbi dose should your readings go hyper again, and your specialist should be following you and not shipping you off to the surgeon. Wishing you all the best.

[Fiaxseed in reply to Greekchick]

That's wonderful greekchick thank you so much. There's a smile on my face as big as a banana xx

[Greekchick in reply to Fiaxseed]

Now that makes my day! Please keep us posted on your progress and how you are doing. Sending good thoughts to you today! XO

[Fiaxseed in reply to Greekchick]

And back to you xx

[Fiaxseed in reply to Greekchick]

And thank goodness it wasn't endo who referred me to surgeon - it was my gp. Who thinks I didn't have a life before I went to see her to ask for a decrease in carbimazole.

[Greekchick in reply to Fiaxseed]

That’s a lucky break there. Hope all works out for you. 🤗

[Fiaxseed]

Thank you scrumbler. Theres a lot of heart on this program I can feel it. Xx

[Tugun]

Yehhhh - Sounds familiar. We had two specialists tell us two different diagnoses within 5 minutes - after they had consulted together!

They each thought the main problem was within their specific field. One said it was the heart. The other said it was TIA's in the brain. The peculiar thing was they had discussed it and each thought that they had both agreed that it was their own diagnosis.

Months later after it had happened again another specialist told us what he thought. Once again within his own field. When I suggested that another specialist thought it might be something different. The response was similar to yours - "I'm the doctor and it is what I say it is."

"No", I thought, "just because you say it is something doesn't make it so. I need proof".

You do too.

[Tugun]

I have to add that one of the doctors in particular was the most embarrassed and he got angry and directed it at us! or should I say he was the most in need of being right!

[Fiaxseed in reply to Tugun]

"Within his own field" yeah I get that. Proof?... I'll get that too. cheers Tugun.

[Fiaxseed]

I know...these people see where they've been and see where they're going but they miss the bit in between.