I was diagnosed with Graves in 2012, responded extremely well to Carbimazole. I relapsed in 2019, and in 2021 and now in 2023. I’m now 52 and a half and going through menopause with dry skin and eyes and global muscle pain. I was of course tested for Sjogren and other autoimmune disorders but everything came back negative. My endocrinologist would like to wait until I’m fully menopaused to think about doing an RAI. I agree with him because I respond extremely well to Carbimazole. But I’m wondering if Graves could give muscle pain, even when I’m in remission and without Carbimazole. I’m sending this message because my father is a retired Gp - 79 year old - and he’s constantly pushed me to have RAI telling it’s Graves which is causing the global muscle pain. It doesn’t make sense neither for me, nor for my GP and endocrinologist. Moreover, I’m almost asymptomatic at every relapse, have very low TSH receptor antibodies. The Carbimazole is causing muscle pain if I take 5mg a day instead of 2.5mg every 3 days. How were your experience with RAI? Thanks a lot.
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Nathalie70
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Once triggered your immune system is more prone to further Auto Immune attacks whether you have a thyroid or not - and as your Graves symptoms are well managed of the AT medication this has to be the better option as non-invasive.
Living without a thyroid is not as simply as mainstream medical believe and the NHS currently only offer 1 of the 3 recognised treatment options for primary hypothyroidism.
Primary hypothyroidism, caused by RAI thyroid ablation is said to be more difficult to treat.
Why take a toxic substance that slowly burns out your thyroid in situ, and is known to be taken up by other glands and organs in the body ?
P.S, If living with blocking Graves antibodies - they will still be down regulating your T4 to T3 conversion whether you have RAI or not.
Hi Nathalie, you say 5mg. Carb. causes pain and a lower dose doesn't. This makes me wonder if the higher dose is making you slightly hypo. You don't mention any fT3 results. My fT3 closely mirrors my symptoms. Half way through range I am asymptomatic. Quarter through range, symptoms appear. You might want to track your fT3 results to see if a pattern emerges.
If you respond to carbimazole, presumably your levels are well controlled.
Are your FT4 & FT3 are at right level? Either too high or too low could account for muscle pain. Does your carbimazole need adjusting? Many doctors go solely on TSH.
Most people say they do not have symptoms when in remission & when levels and nutrients are right.
Hello there, I was diagnosed with graves and TED in 2018, I tried carbimazole alone(titration) and also with thyroxine as block and replace.I did suffer bad muscle aches and pain.Turning over in bed was painful.I chose to have a thyroidectomy in June last year and have no regrets.I have kept my profile up to date if you would like to read it.Just click on the picture at the side of my name and there it is.Hope this is helpful.
am probably not very helpfuI, I was on Carbimazole for an overactive thyroid that was showing in blood tests but I had no symptoms whatsoever, I took 5mg per day for 12 weeks. After just a couple of days I had unsteadiness when walking, heavy feeling in the thighs and brain fog, these all got a lot worse over the weeks and then I had muscle pain, very low mood (never had any before in my life) and generally felt unwell. Suddenly my goitre started to enlarge - not experienced since 2016, and it was affecting swallowing and breathing. After 7 weeks atrial fibrillation started to kick in, all day every day until then it had only been 3 or 4 times a year for up to 48 hours at a time. I then stopped going out to anything other than essential trips as I felt so bad and thought I was going to pass out most outings. My Gp agreed I should stop taking it and within days the symptoms eased off and after a month all except the AF were gone, it has taken increased Sotalol medication to get the AF under control. The endocrinologist does not accept that any of this was down to Carbimazole or any effect it had on the thyroid. As I am only borderline for treatment I am being monitored to see whether or not I need to look at another treatment but I am really worried about doing anything as my life was albeit destroyed after having had no problems from the thyroid in the past. I researched Carbimazole and discovered that it has never been thoroughly researched and that doctors in China and the US are now starting to see adverse affects in patients on Carbimazole but most of the tests have to be done on patients in hospital to be able to get decent results. I hope you get sorted. Lynda
Not answering your question but just wondering why you have been advised to delay RAI until fully menopaused?
I am in a very similar situation to you, aged 51, I respond very well to carbimazole, go into remission for periods & occasionally relapse.
I dither between staying on carbimazole and having RAI, (mainly because I suffer with ectopic beats, and worry the yo yoing in thyroid levels may trigger AF) but my endo has never mentioned menopause.
Yes, I’m 52 and a half and my last 2 periods were a very mild spotting. Moreover, I’ve been suffering from dry skin and eyes since the age of 45: at the same time, the global muscle pain appeared with extremely irregular periods. From 2016 to 2018: extremely short periods, 12 days, I was put on progesterone to extend them but I gained 20kg. Then suddenly, in June/July 2018, my periods started to extend to 22 to 46 days with massive insomnia. I was put off progesterone, tried various HRT but they all gave me head ache and nausea. So I was advised to take Soya tablets. They worked wonderfully, they stopped the insomnia and weight gain. Then, something happened in August 2020: massive increase of pain in the legs only. It’s a pain which is still investigated because the investigation was delayed by covid.
As I have symptoms similar to an underactive thyroid, my endocrinologist has postponed RAI until I’m fully menopaused because it would be too difficult to balance my thyroxine level at the moment. Moreover, I get my TSH receptor antibodies tested privately and my Graves is less and less active. So my endocrinologist hopes the Graves will become rather inactive once I’m fully menopaused. It started at 40, my endocrinologist has seen similar cases: Graves dying with the menopause. He’s seen the opposite too. So the approach is wait and see.
Ah thank you so much! My graves started around 4 or 5 years ago, just as my periods became irregular and I have always wondered if it was a coincidence or connected.
My gut instinct is to do nothing permanent until all that hormone stuff settles down. Maybe just an excuse to delay RAI though, I do well on carbimazole so hard to make the decision to do something permanent, with no going back.
I’d love to hear some feedback from people who have had RAI too.
For me, Graves started 6 years before the first perimenopause symptoms. Nevertheless, my endocrinologist has told me that Graves has an impact on periods and menopause and vice versa. So what I did in 2019 is that I negotiate a fee with an NHS endocrinologist: I see him privately, mainly by phone for a very low price but he’s the clinic lead of the endocrinology service of my NHS hospital. In case, my Graves becomes unmanageable, I’m hospitalised immediately. I’m not on the NHS waiting list: I have a 15 minutes appointment with him by the NHS every 6 months. And I can do my blood test privately or with the NHS depending of my financial situation or health situation. Last year or during the lockdown, I had all my blood tests done by the NHS. So if you have the financial means to negotiate a deal as I did, it’s a good solution to cover all angles of the disease and manage it in the best way possible. I opened this thread because my father is a retired GP and he sent me an email on Monday telling me I was going to destroy my heart, my brain and my muscle by being followed by this endocrinologist. My husband read it and told me that my father was showing signs of dementia. I contacted my brother who lives one hour from my parents. He’s read the letter and he’s in shock. As my father was the family GP until I got 18 and moved 600 miles from my parents to go to the uni, I posted this thread because my father put doubts in my mind. Take care.
Thanks Nathelie. RAI was probably the main treatment when your Dad was a GP, but times have changed and your endo is hopefully giving you great advice.
Would your Dad have commented like that to you a few years ago, if not then sadly it is probably age, but totally get that his words have affected you.
Either way hope all goes well, trust your own instincts, you can only deal with what you know today, not what’s ahead. I often ask my endo what advice they would give their sister if they were in my situation. Best of luck, Graves is such a nuisance!!
I was diagnosed with Graves in 2007 and treated with carbimazole and levothyroxine (block and replace) The treatment worked quite well for me and I had no specific side effects from the carbimazole (but a lot of typical graves symptoms whenever my levels were off), then I was in remission until end of 2018. Went back on the carbimazole +block replace again, but a few weeks in the treatment , I suffered from agranulocytosis (carbimazole rare side effect your GP woukd have told you about). Thankfully caught on time but had to stay in hospital for 3 days until my immune system was back to normal (thankfully, this all happened before the covid epidemic). I ended up having a full thyroidectomy in March 2019 and I have no regret at all. . I realise now that even when I was stable through the block and replace regimen, and with normal b12, vit D etc, I would rarely be 100% especially my eyes (mild TED and very dry and sore and running at times). I also had muscle cramps at night sometimes, no muscle weakness though. I'm now on 75mcg levothyroxine per day during the week and 50mcg on Saturday and Sunday, and feeling great. Eyes problems gone too, as well as cramps.I personally was not keen on RAI seeing I had issues. I hope you get better soon and find the solution that works for you.
Thanks a lot: block and replaced was offered to me in 2015 but I turned it down. It was offered by a physician with an interest in endocrinology and not an endocrinologist. I never had any eye symptoms. But Carbimazole can cause muscle pain, especially low maintenance dose. So block and replace is not an option for me. Thanks for your feedback. Take care.
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