I am in US and I was diagnosed with Graves back in Dec of 2017. I have been on Methimazole since then and my dose needs to be adjusted regularly as my thyroid levels keeps fluctuating. I went on quite a low dose as low as 2.5 mg from 30 mg back in 2021 and looked like I might get into remission but in Sep of 2021 my eyes flared up and I have Thyroid Eye Disease (TED) now and my thyroid levels are off the chart, so my dose has gone up to 15 mg with possibility to go up to 30 mg if my results don't come back good in next 3 weeks.
Because of TED, I cannot take the Radioactive Iodine and my Endocrinologist and Thyroid specialist both have been trying hard lately to get Thyroidectomy. I am worried that removing Thyroid gland completely and going for invasive treatment might have other side effects and complications but my endocrinologist is insisting to get it done as Methimazole is not long term solution can cause birth defects if I ever get pregnant and medication itself has other side effects. I am not planning to get pregnant in next 5 years but he said removing thyroid is your best option as it's impacting my eyes and we have not been consistently able to control the thyroid levels.
I have been also advised to get the drug "Tepezza" for my TED.
Please let me know if you have had experience with Tepezza and please advise if Thyroidectomy is my only option at this point? Or can I be on Methimazole all my life? They staying on Methimazole/ Anti Thyroid medication all your life and with changing thyroid levels I could develop Osteoporosis at a very young age.
Thank you.
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Missxyz
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Taking Methimazole doesn’t cause Osteoporosis. Doctors often say having a low TSH causes it but that’s not accurate either - it’s having high untreated thyroid levels for a long time which can cause it.
By the sound of it methimazole has not worked very well in keeping you stable. How often are you monitoring & dose adjusted?
I’m wondering if your Graves is causing fluctuations or if inappropriate dosing & monitoring is causing a swing in levels which is the problem.
Has anyone suggested block & replace? Higher dose of methimazole to block thyroid and replacement dose of levothyroxine to replace the levels. It’s more suitable if remaining stable if difficult.
Women do have pregnancies when taking treatment - propylthiouracil (PTU) is preferred during in pregnancy, had this ever been mentioned to you? Although there are still risks with the medication and to you becoming hyper when pregnant.
Having a thyroidectomy is an invasive & irreversible step & your doctors should be giving you the options & shouldn’t be insisting anything.
There still possibility for Graves remission.
Do you have any results?
For full thyroid function you need
TSH
FT4
FT3
Thyroid antibodies TPO & TG. Trab or TSI antibodies must be tested for Graves diagnosis.
Also important to test folate, ferritin, vitamin D & B12.
hello there, I have graves disease and TED.I have been on carbimazole only and also on carbimazole and levothyroxine as block and replace since 2018.Two weeks ago on 14th June I had a total thyroidectomy.I was lucky to be able to come to the decision myself without pressure from the medical profession.I feel I had given everything a good go and had had enough.I have no regrets, feel like a different person .Just feel so much better.I know there could be bumps in the road but at the moment everything in the garden is rosie.I have kept my profile up to date if you would care to take a look and it would explain how I got to this point .I think it is best to have as much information as possible so you can make the right choice for you.Hope this helps in some way.
Basically all the Anti Thyroid drug does is buy you time with the hope that this is enough time for your immune system response to calm down in this first phase of Graves Disease .
The most recent research it suggesting that the longer ones stays on the AT medication the better the outcome for the patient, though likely more difficult and more expensive to manage.
It is all a question of degree and if your symptoms are unable to be controlled by the AT drug and your life intolerable you maybe looking at definitive treatment.
I had RAI thyroid ablation for Graves and wouldn't recommended this toxic substance to anybody.
Graves is a poorly understood and badly treated auto immune disease, said to be driven by stress and anxiety.
Your thyroid is the victim in all this and not the cause - the cause is one of your immune system having been triggered and attacking your body.
These are Elaine Moore's word's, not mine - and I only started my research into my Graves some 10 years post my RAI thyroid ablation in 2005.
Elaine's Moore's Graves Disease Foundation website is Stateside as is Elaine who is now a leading expert and researcher on all things Graves and now has several books published in this speciality. elaine-moore.com
Elaine also runs a forum, much like this amazing platform and suggest you " dip in " with a view to find fellow Graves patients within your catchment area and time zone so you have some closer support system and also the possibility of a referral to a specialist in Graves should you wish a second opinion.
They keep pushing for thyroidectomy because your becoming too much for them to deal with and Thyroidectomy requires a life time of medication and adjustments when your feeling unwell but reality is with thyroidectomy they can adjust your meds a few times “maybe” and throw you away like trash no matter how you feel … both choices suck.
Hi, a few months ago there was a post about iodine, where many joined in and it got a bit heated. The post then was removed by the moderators. <redacted> Maybe you could contact the moderators directly and ask if that post is still available & they could DM it to you. You're right to be cautious about any procedures because there's no going back once you've gone down that route. I'd personally seek out a practitioner who is very knowledgeable about thyroid and iodine use. I think you'd need to dig much deeper with a functional medicine/ integrated medicine practitioner who has a great knowledge about how human physiology functions rather than a mainstream Dr who always individually separates everything in a box. Are you familiar with Dr David Brownstein 's work? Lynne Farrow- The iodine crisis?- book. Here's a few links but there's a lot more I previously posted.
I don't claim that iodine is a cure all, people often make the same mistake when start supplementing with it. It's not like a Vit C supplement that you pick up in the drug store and start popping it willy nilly. You have to educate yourself first, even better to find an experienced practitioner who can guide you along. They'll take a full medical history, dig deep and make sure you're prepared to take certain steps. You know yourself the best, your own body but you don't know /understand how complicated all the different systems are in the human body and which lever to pull and when. After all this pandemic madness you have the option to seek consultations on line and find the right practitioner for you. Beg, borrow or steal (as a saying goes) to get your health back on track before putting yourself on any surgeon's table. Hope this helps. 🙂
Capri2020, 'Maybe you could contact the moderators directly and ask if that post is still available & they could DM it to you.'
Capri2020, once a post has been deleted, whether by the original poster or by the admin team, it is not recoverable, and therefore not available to be sent to anyone by any method.
Just wanted to share my experience with Methimazole. I’ve been on it for almost 20 years. I’ve experienced no adverse affects whatsoever but I was never able to go into remission for my graves. I’ve had hyperthyroidism since I was 10 years old. Now, I am considering full thyroidectomy because I’m quite tired of the fluctuations and hope that it makes pregnancy a breeze - but my goal was to go into remission with Methimazole. I personally don’t think there’s anything wrong with taking it long term. All my endos have tried to scare me into RAI and surgery but I continued with Methimazole therapy & I’m fine.
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