Carbimazole, Grapefruit Drug Interact... - Graves Disease Su...

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Carbimazole, Grapefruit Drug Interactions and Medicinal Mushrooms

Bellazzurra profile image
17 Replies

Hello everyone,

I wonder if anyone here has information about possible interactions between Carbimazole and fresh grapefruit juice? I’ve been drinking grapefruit juice for the past two days and all of a sudden, I’m feeling jittery, nervous, anxious, depressed and I can’t sleep through the night. I’m wondering whether the grapefruit juice has made the Carbimazole less effective and hence, I’m starting to experience hyperthyroid symptoms again? I will say that I’ve been under stress for the past couple of weeks but even then, I’ve been coping really well - until now. The only other new thing that’s been introduced is a Reishi mushroom (Ganoderma lucidum) supplement but my endo gave me the all clear on that as she didn’t think it would affect me negatively. I know that medicinal mushrooms can stimulate the immune system but most of the research I’ve found on Reishi points to it being immunomodulatory rather than stimulatory.

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Bellazzurra
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17 Replies
ling profile image
ling

Yes the grapefruit can dilute the effects of the carbimazole. As does orange, and similar fruits.

When I ate oranges while on carbimazole, it cancelled out the carbimazole and hyper symptoms started resurfacing.

After u stop the grapefruit, and if symptoms don't improve, then maybe u want to consider stopping the mushroom as well.

Best wishes.

Bellazzurra profile image
Bellazzurra in reply to ling

Thank you so much for this Ling. I’ll stay away from grapefruit juice and I may even give up citrus fruits entirely although I’ve never noticed any issues with clementines. I’ve read that the effects of grapefruit juice can linger for up to three days after consumption so I’ll give it a week or so and see if my symptoms improve by then. Best wishes to you too :)

ling profile image
ling in reply to Bellazzurra

You're most welcome : )

Eat a wide varied balanced diet where possible. It will support the body as it works through the Graves.

Try not to cut out any foods unless it's necessary. In your other thread, u mentioned gut issues. Can u elaborate?

Re stopping carbimazole in 18 months. Remember before u do this, to test your Graves antibodies. If they are still high or positive, its best to continue with the carbimazole as high antibody levels indicate a high chance of relapse.

Bellazzurra profile image
Bellazzurra in reply to ling

Thank you again for this! My endocrinologist is looking at taking me off Carbimazole at the end of January but she said she’ll only do so if my TSHR antibodies are back within the normal range. When I checked my TSI antibodies in August, my levels were at 12.9 IU/L. By the time I tested them again in November, they had fallen to 6.91 IU/L (range is <0.01 IU/L). I hope my TSHR is moving in the same direction; I’ll have that tested again at the end of January.

Judging by how I currently feel, I think January may be a bit too soon but my body is very sensitive to Carbimazole and it can send me hypo even at low doses. It seems that after a month or so on the same dose of Carbimazole, it has to be reduced or my FT3 starts getting suppressed.

My endo also said that before referring me for RAI, she’ll do a radioactive iodine uptake test. If the uptake is less than 40%, she wouldn’t recommend RAI. Personally, I’m not interested in ingesting radioactive iodine of any form. Also, I want to keep my thyroid.

I’ve been following the AIP diet and lifestyle protocol since August and I think that’s helping. As for the gut issues, it’s something I’ve dealt with in one form or another for years - being sensitive to foods that others weren’t. I had chronic bloating and constipation for years until I realised that I had an issue with whole grains e.g wheat, rye, spelt, Kamut etc.

Funny enough, refined wheat doesn’t give me any issues. Quinoa was fine for a while but then one day, it started giving me terrible stomach pains. I have to soak oats overnight and then they’re fine. I also experience some degree of fructose intolerance because for example, I have to eat no more than one apple at a time or two small mangoes per day. Otherwise, I get really bloated and constipated for days afterwards.

For years, I’ve been able to manage the bloating by avoiding/ limiting trigger foods but since I started AT treatment, I’ve been dealing with mild bloating even though I’m not consuming any of the usual culprits such as gluten and dairy. I sometimes wonder if it’s a case of gut dysbiosis - especially because I had huge bouts of diarrhoea for months before I was diagnosed with Graves’ Disease.

ling profile image
ling in reply to Bellazzurra

Pretty amazing - u have an endo who has read the guidelines from the thyroid association!

The November TSI level at 6.91 (range <0.01) is still high.

Sensitivity to carbimazole. If this is really the case, yes u should keep a close eye on dosing. Its just as important not to be in a hypo state for too long.

Fyi it's possible to be on a dose as low as say 0.625mg say every other day or 2, 3 times a week, as long as it works for u. Carbimazole, given sufficient time, can and does bring Graves antibodies into range and even down to zero.

RAI or thyroidectomy. Keep an open mind on this. They are just options u might need in the medium to long run in this journey. With the possible twists and turns that come along, if serious symptoms do arise, then there may come a need to consider using them to save your health or life.

Diarrhoea. That is one of the indications of Graves.

You give a fine description of your gut issues. With Graves, it would be good to be careful and take good care of your gut and intestines to ensure they continue to function well. Being able to absorb all the nutrients u eat, is especially important when living with Graves. Do u take probiotics?

Bellazzurra profile image
Bellazzurra in reply to ling

Yes! Yeah, my TSI in November was still pretty high but I’m hopeful that it’s a step in the right direction.

“Fyi it's possible to be on a dose as low as say 0.625mg say every other day or 2, 3 times a week, as long as it works for u. Carbimazole, given sufficient time, can and does bring Graves antibodies into range and even down to zero.” I will keep this in mind! My endocrinologist is worried about long term Carbimazole use because she says it’ll increase the risk of negative side effects but it’d be good to stay on it long enough to see my antibody levels normalised.

I try to keep an open mind about RAI/thyroidectomy but I struggle to see how they are permanent solutions when I’ll end up on Levothyroxine for life. I was told that the size of my goitre is too small and as a result, thyroidectomy would be too risky. But yeah, it’s good to keep an open mind given how unpredictable Graves’ Disease can be.

“Diarrhoea. That is one of the indications of Graves.” Yes! Turns out, I had so many symptoms but I wasn’t very well acquainted with Graves’ Disease at the time.

“You give a fine description of your gut issues.” Thank you, I was worried that I hadn’t articulated myself well enough. I’ve been working with a functional medical doctor for a couple on months and we’re working on fixing my gut issues. She’s prescribed a course of probiotics and prebiotics. Let’s see how things go!

ling profile image
ling in reply to Bellazzurra

Yes definitely good that it's coming down.

Re long term carbimazole. I've been on carbimazole for 6 years. I've never stopped taking it because of my individual health circumstances.

As mentioned in the article below, I can attest to the skin reactions, occasional muscle or joint pain thus far.

Have a read of these two articles-

Indefinite antithyroid drug therapy in toxic Graves’ disease: What are the cons

ncbi.nlm.nih.gov/pmc/articl...

Long-term methimazole therapy improves Graves disease remission rate

mdedge.com/clinicianreviews...

The second article, if what it reports is true, then most of us would eventually end up hypo regardless how we get there. After stable blood test results for 5 years, my results finally shifted last year and I had to titrate down my carbimazole dosage. I do suspect that my thyroid is moving towards hypo.

Re probiotics. Do share with us how that goes.

Best wishes.

Bellazzurra profile image
Bellazzurra in reply to ling

Thank you, ling, for sharing the articles. I’ve given each one a careful read - lots of interesting insights.

“After stable blood test results for 5 years, my results finally shifted last year and I had to titrate down my carbimazole dosage. I do suspect that my thyroid is moving towards hypo.” The one time I went hypo, my doctor asked me to come off Carbimazole for 2-3 weeks to see what would happen with my levels. Within 2 weeks, I was back hyper again. I suppose that’s the trouble the NCBI article highlights with ATDs - their effects are often not sustained after they are withdrawn.

“Most treated patients in Graves’ disease eventually go on to develop hypothyroidism regardless of the treatment modality used. This awareness of inevitable hypothyroidism with Graves’ disease has led to a change in the objective of treatment.” I’m not sure what the authors in the NCBI article mean by “inevitable hypothyroidism” when it comes to ATDs and it’s something I’ll need to do a bit more research about. As I’ve understood it, ATDs do not cause permanent hypothyroidism but perhaps, it’s a different case with long-term use.

“Prolonged drug therapy has not been shown to increase the likelihood of lasting remission. No difference in remission rates have been seen in subjects treated with for 24 versus 12 months[4] or 42 versus 18 months.[2] Weetman reviewed prospective trials comparing different duration of treatment and showed that remission rates are not improved with ATD therapy beyond 18 months in adults.[5]”

It’s good to know that the doctors cited in the MD Edge article followed patients who’d been on ATDs for much longer than the usual 18 - 24 months and saw a significant increase in remission rates. The more options there are, the better.

I’ll discuss these things with my endocrinologist and I couldn’t agree more with the following statement, “There has been a lack of general agreement as to which therapy is the best as none is ideal since all effectively restore euthyroidism, but with some limitations. Thus, patients should be well-informed about the available treatment options, their potential side effects, and be a part of the decision regarding the choice of therapy.”

Have a very Merry Christmas and thank you again for your kindness and willingness to share your knowledge on this platform. I will keep you posted on how things go with the probiotics ✨

ling profile image
ling in reply to Bellazzurra

With regard to "inevitable hypothyroidism", it's in reference to those who do not achieve remission after stopping ATDs.

I've read somewhere and heard from endos on health programmes, that for those hyperthyroid who do not go into remission, if they do not receive RAI or have a thyroidectomy, the thyroid eventually burns itself out and one becomes hypothyroid.

Wishing u a Merry Christmas and Happy New year : )

Bellazzurra profile image
Bellazzurra in reply to ling

Interesting, I’ve learnt something new. I’d always thought the thyroid only burnt itself out in people with Hashimoto’s Thyroiditis. Hope you had a good Christmas!

pennyannie profile image
pennyannie in reply to ling

How interesting - thank you for my continued learning curve :

ling profile image
ling in reply to pennyannie

You're welcome pennyannie.

Wishing u a Merry Christmas and Happy healthy New year

: )

pennyannie profile image
pennyannie in reply to ling

Ditto - I always enjoy and have learnt much reading your " take " on all things Graves.

ling profile image
ling in reply to pennyannie

You have supported many in this difficult year. God bless your kind soul : )

pennyannie profile image
pennyannie in reply to ling

Snap !!!

Marmont profile image
Marmont

Ohh, I've been using Red Reishi mushroom extract and Lion's Mane mushroom extract for a long time now. The first one was for my sleeping problems. Yes, it's mainly for the immune system, but it also helps a lot if you have insomnia, headaches, or if you are stressed. And the second one is for depression, anxiety, and I heard that it also prevents dementia, ulcers and reduces heart disease risk. I always buy them from qitraditions.com/collection... and never had a problem. So I would totally recommend it.

Bellazzurra profile image
Bellazzurra in reply to Marmont

Thanks for sharing! I ended up reintroducing the Reishi mushroom supplement and didn’t have any issues - I think the grapefruit was what was giving me issues.

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