Update on my Endo stand off!

[Cat_lady13]

Hi, I posted a while ago how I’m a long term user of carbimazole 24+ years now and how my endo was trying to force radio iodine therapy on me.

So I backed out of the consultation and my endo got very cross and sent my doc a letter asking ‘as this patient has refused treatment, could you monitor bloods and medication indefinitely!

Which he did, I have 6 weekly tests n I get copies of the results. All of a sudden, an appointment for said endo via telephone consultation came through the post, I thought “great, what does he want now”?! On this call he basically said my results look fine (that was nice of him to look!) and he then said that he’s never had a patient on carbimazole for so long and as far as he’s aware it’s uncharted territory, but as I have no problems he’s happy to let me continue, but if there’s any problems at all or it stops doing the job then I’d have to change plan of action.

I just wanted to say a huge thank you to the people that gave me insight into thyroid treatments on my last post, It re affirmed my decision and I looked further into all that was said and I’m happy I’ve stuck to my guns on this. Of course if my health changes I would do whatever was necessary but for now I’m good.

THANK YOU FORUM!😊

[SeasideSusie Remembering]

Now doesn't that just go to prove that doctors should listen to their patients, after all they know their own bodies better than any doctor.

Well done.

[Cat_lady13 in reply to SeasideSusie]

I’m just grateful for places like this that point me to useful information and accounts, I’m pretty sure if I had kept it all to myself without looking on here, I would have been railroaded into extreme measures!

[Mugs19]

I met someone recently who said she had been hyperactive for 15 years,on carbimazole and felt fine. She is an NHS worker and is fully informed about her condition. I had RAI because I was led to believe it was risky to have carbimazole long term. If I could undo it I would.

[pennyannie in reply to Mugs19]

Ditto :

[Cat_lady13 in reply to Mugs19]

It’s not right is it being mis informed like that😕

[Billyboy2u]

WOW

Just had an appointment with my r Endo and he is trying to get me to have mine removed. I told him I don’t want it removed and told him if I had it removed I’d still be hypo and then find it hard getting the right dose to suit me so I’m not happy. Plus my little butterfly regulates a lot of other things too.

He said have a few months to think about it and we’ll have another way. He then added but I think you’ll find removing it is the best option.

I don’t know what will happen now at our next meeting as I’ve still not changed my mind.

Although reading your OST helps me. Thanks.

[Cat_lady13 in reply to Billyboy2u]

You need to do what’s right for you at every step, if you’re doing fine why change things, I believe that as I’ve been on one tablet a day for soooo long perfectly fine, having a drastic change will will be a nightmare for me.

[Pinkhill]

Thanks for posting. I'm at the start of this journey and have no intention of being made underactive. Thankfully I have an endo who is onside with continued Carbimazole

[Cat_lady13 in reply to Pinkhill]

That’s great, a lot of them don’t leave people on it long enough to find out, like mine said for him n his colleagues it’s never been done before and that I’m a first for them, hopefully it’ll give others insight that you don’t have to be forced into treatment that just sends it the other way! 🤞🏼🤞🏼

[PurpleNails Administrator]

“as this patient has refused treatment, could you monitor bloods and medication indefinitely” - I suspect he wanted to discharge you, but for whatever reason hasn’t been allowed. Either it’s not permitted while you remain hyper or your GP has asked that they still review you regularly.

“happy to let me continue” well he doesn’t have a choice but to respect your decision.

It sounds as if you are also being monitored more frequently with you GP too. 6 weekly as opposed to every 3 months. That can only be a good thing.

Are all your results in range? I find unless my FT4 & 3 are kept low My TSH remains suppressed. But I’d rather not have such low levels.

[Cat_lady13 in reply to PurpleNails]

Yes they’re in range still, I was wary as to why he’d get back in touch but at least for now he’s stopped with the pressure to get me off the books!

[Gingernut44]

Good for you. Oh how I wish I’d found this forum BEFORE I was pressured into RAI after only 4 months into Carbimazole. Of course, naively, I thought they were doing it for my benefit- how wrong can you be. They, the good old NHS, not only destroyed my thyroid, they also destroyed my life. Now having access to my blood test results, I can see how badly I was treated. They were short staffed (and still are by all accounts) and were always cancelling my appointments so they took the easy way out to get me off their books. 3 years on from RAI and I’m still suffering the exact same hypo symptoms that developed six weeks post treatment with absolutely no help from said NHS. I would urge anyone being pressured into RAI to think hard about it and do your research.

[Canta]

I had a partial thyroidectomy in 1985 at the age of 32. I felt fine on carbimazole and wanted to stay on it. I took it for about 18 months, having become pregnant a couple of months after starting, but became hyper again within six/eight months of stopping.

My (female) consultant said I was "too young and lovely" to have RAI as "some is absorbed by the ovaries". I would never have accepted RAI anyway, even though I knew nothing about it. I argued against the thyroidectomy, wanting to stay on carnimazole, but in those days the only information was via the library.

I hated the idea of having to rely on thyroxine after the op and I guessed it would be a fight to get an adequate dose. My endo said she wouldn't keep me low and mused that it was "so much easier" to regulate hypo patients. Having nothing to back up my instincts I caved in to the pressure. Nowadays I wouldn't have.

Good luck with whatever you decide, Cat lady.

[Cat_lady13 in reply to Canta]

Thank you, I’m sorry to hear of your experience.

[Billyboy2u]

I have only had the treatment for 4 months then was ok for 18 months then relapsed but to be honest didn’t feel that bad as the first time. Caught it early on. Granted I felt like crap the odd day or two but could more about ok and tried to keep busy.

This is why I was in shock at the response to get rid of my thyroid at the very first opportunity.

[Aimead]

I found your post very interesting. I have only been takingccarbemazola for a few months and it seems to be working well. I’m on a lo dose and it’s nice to know that you have taken it successfully for a long period. All the best for the future

[Cat_lady13 in reply to Aimead]

Thank you!

[LAHs]

The way I see it is that hyper or hypo you are going to be fiddling around for a long time trying to get to your perfect dose so unless you have thyroid cancer you may as well fiddle around at the high (hyper) end than at the low (hypo) end. You will get to your perfect dose eventually, took me at least two years, about five docs and some serious displays of despair in some doctors' offices but somehow your body doesn't allow you to give up. Just keep going.