Feeling confused

[Tconn73]

I’ve been on carbinminozole since jan this year 30 mg , then down to 10 mg now down to 5 mg , it is my second round of taking this drug was originally on 5 mg a couple of years ago had a relapse and was put back on it in jan with view to a total thyroidectomy

However I hoped I could have just stayed on carbinminozole long term as I feel so so well on it no side effects etc

Saw consultant yesterday and was told it’s not really an option and will have to come off it in 6 months and if I have another relapse will then need surgery

When I asked I f I could just stay on carbinminozole was told yes you can but it’s against our advice

I feel so confused as I don’t want to face further problems that I don’t have that may be caused by the surgery

Any advice is greatly appreciated

Thanks for reading

Tracy x

[asiatic]

I too saw my Edo yesterday. He is happy to treat me long term with Carbimazole. There is no definitive answer. After reading up on all the pros and cons I went with my gut instinct. After 3 years on carbimazole my Trab is still high at 15 so there is a high chance I would relapse. My endo worked with me to find the lowest effective dose. For me this is 10mg of Carbimazole and 50mcg. Levothyroxine as block and replace. I feel great and my TED is under control. Perhaps you were taken off medication too soon. Don't be bullied into Thyroidectomy. The choice is yours. Just make sure it is an informed one.

[Tconn73 in reply to asiatic]

Thanks so much for your reply , I did feel I had no choice but to opt for surgery should I relapse , I also had TED affecting just my right eye this seems to have settled down also , I didn’t really know about this block and replace option

I am 45 she said if I were 85 she would be happy to treat me with medication so don’t know if this is the reason they seem reluctant to do this

Thanks once again for your reply and good luck with your journey xx

[pennyannie]

Hello Tconn

I'm presuming you have Graves Disease as you are on Carbimazole.

I too have Graves, diagnosed 2003 and had RAI treatment 2005.

Graves is an autoimmune disease and as such it 's for life, it's in you blood and your DNA.

When the Graves anti bodies attack the thyroid it is said to be life threatening because the thyroid is such an important, major gland, and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, so when it goes a bit " haywire and under attack " from the anti bodies, the symptoms can be difficult to manage.

From memory I thought patients were given about a 15 month window on anti thyroid medication in which time endocrinology would be attempting to manage the thyroid and looking to establish " block and replace " medication for longer term management.

I read of many patients on long term anti thyroid medication and this must be the first aim for you and the endocrinologist to work towards.

Living without a thyroid isn't much fun, especially when the Nhs is reluctant to treat with anything other then levothyroxine.

There is an article by Professor Toft who is an eminent endocrinologist and past president of the BTA stating :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-131 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism ".

December 2017 - Journal of the Royal College of Physicians of Edinburgh.

The full article is on this website.

Play for time, there is a vaccine currently being developed for Graves, and keep your options open for long as you possibly can.

The endo isn't the one living without her thyroid, she's the one moving you through the system as quickly as she can, to reduce waiting times and her outpatient list.

Sorry if that sounds a bit cynical, but please do give this some thought and do your research into all the options available that allow you keeping your thyroid with " you " .

[Tconn73 in reply to pennyannie]

Thanks so much for your reply it’s so nice to have some more options made clear to me , at the moment I feel a bit lost as to know what to do

[pennyannie in reply to Tconn73]

Hey there,

You might like also to take a look at the Elaine Moore website.

This lady has the disease and found no help when she went through RAI treatment in the late 1990's so wrote a book to help others. She now devotes herself to all things graves for anybody to use and her website is an excellent platform, much like this one.

It is stateside so medical protocol is slightly different but the research is current.

She also writes on the alternative holistic treatment options focusing on the whole body, since Graves is auto immune disease, affecting many different area of ones life.

Graves tends to be stress and anxiety driven so it might be an idea to look at one's life / work balance, make diet changes and generally try and find time for relaxation and the time to enjoy activities that you enjoy, and you want to do.

Just thinking out loud, with Graves your body will have been running very fast and now with anti thyroid medications it might have come to almost a full stop. It's important that your ferritin, folate, B12 and vitamin D are all kept at good levels as if not optimal any thyroid treatment maybe compromised and results a bit disappointing.

[Tconn73 in reply to pennyannie]

Thanks so much will look at this xx

[pennyannie in reply to Tconn73]

I've a funny feeling I might have said all this before, some months ago !!

never mind - blame it on Graves !!

[ling]

Hi Tracy, you might find these links helpful -

2018 European Thyroid Association Guideline for the Management of Graves’ Hyperthyroidism

karger.com/article/fulltext...

Thyroid Eye Disease: Its Causes and Diagnosis

reviewofophthalmology.com/a...

[ling]

Would it be ok to share your blood test results with the ranges?

Thank you

[Tconn73 in reply to ling]

Hi

I don’t have them to hand I’m afraid, I think the TSH was 2.3 I wasn’t given a print out of the results the endo just showed me them on a screen , thanks for your reply and the link to the article was very helpful

Best wishes

Tracy x

[Greekchick]

Hi Tracy,

I was on Tapazole for 2 years with no side effects and felt very good - my Graves symptoms were well controlled.

This is not the experience of everyone as well documented on this forum. My endo was prepared to let me stay on it as long as I was controlled. I became resistant after 2 years and then my toxic multinodular goiter became so enlarged that I needed urgent surgery 13 weeks ago and had a TT.

If carbimazole works for you and you can stay on it with normal blood work and good white blood cell count and liver function, which was my case, see how it goes for you. Everyone is different - and I am not a doctor, but if you see you feel ill , you can always stop.

My former endo wanted me to have a TT 25 years ago - and I managed to keep my thyroid for that long - he agreed to a watch and wait for me.

My current endo also allowed me to stay on Tapazole until it was no longer an option for other reasons. I only started Tapazole 2 years ago - but even once resistant always had great blood work with no side effects.

Wishing you well and all the best! With this disease , often it is play it by ear and watch and wait. Thyroid disease usually does not progress fast - and unless there is an emergency, you have time to make decisions.

Wishing you well and sending positive thoughts! 🤗

[Tconn73 in reply to Greekchick]

Thanks so much for your reply , hope you’re feeling good after your operation,

Best wishes

Tracy x

[Greekchick in reply to Tconn73]

Thanks for your good wishes! I so appreciate it. All the best.