Is Long-term Antithyroid Use the Best Treatment for Graves Disease?

I'm pleased to moderate this discussion today, and we have two esteemed guests with us. The first is Dr David Cooper. He is a professor of medicine and radiology at the Johns Hopkins University School of Medicine. He's the director of the thyroid clinic there, an internationally known expert for his work in thyroid research, and an esteemed educator and clinician. He's also one of the co-authors of the American Thyroid Association 2016 hyperthyroidism and thyrotoxicosis guideline.

We also have Dr Whitney Goldner, who is a professor of medicine in the Division of Diabetes, Endocrinology, and Metabolism in the Department of Medicine at the University of Nebraska College of Medicine and the University of Nebraska Medical Center. She is the medical director of the Thyroid and Endocrine Tumor Program there, and she is active in the Endocrine Society and the American Thyroid Association. Her clinical and research interests are in thyroid disease, thyroid nodules, and thyroid cancer.

[BumbleBee-ut]

I was on antithyroid drugs at least for 3 to 4 years and I’m now in remission and I’m in my second year of remission. I completely changed my diet. I’m feeling great now.

[erica]

Here after a very disappointing appointment with a thyroid specialist..I was given no options just surgery ..this is encouraging

[SparkyOne]

What people with hyperthyroidism need is more research into hyperthyroidism. Nothing has changed in 70 years because of a lack of research into it. There have only been studies on the drugs.

[jodichen]

I’ve been battling this disease going on I believe 4 years now. It’s been a journey of going from hyper to hypo, resulting in 10lbs of weight gain/loss. It’s so frustrating playing with varying dosage levels with each visit with my endo. With each visit, it always ends with a lecture of bullying me to the permanent radioactive treatment. I’ve heard it all. One young PA even yelled at me to the point of tears for not doing this, threatening death upon me. I know the risks, but I’m on very low dose and my liver functions are good. The thought of being permanently hypo with weight gain and being tired all the time is enough for me to push back against their lectures. Though they say there’s no preventative measures, I am proof positive that light exercise could help me get off this disease. I just need to keep up my exercise regiment. Anyway, I am so glad to come across this video… thank you!!! I just wished more endos would hear this. I am certainly going to show mine on my next visit!

[leakimanh]

I’m so surprised with all comments because I cannot feel the same as you… I also have Grave disease and I am actually so tired to change my medication every months for 2 years, I cannot sleep at all as my heart race . Cannot exercice without being in trouble breathing (I am professional ballet dancer) I feel like having a heart attack if a run… I just married and cannot dream of becoming pregnant as still taking 3 pills of mercazole… my liver is struggling…
I plan to do surgery soon to move forward. Living with hyperthyroidism is dangerous but not hypothyroidism. In my case I have a lot of hyperthyroidism symptoms so after hoping and destroying my body for more than 2 years surgery is the best option.
I am not scared of hypothyroidism symptoms and strong enough mentally now to not let me convince I will be tired. I think psychologically I can cope and avoid it and most of the people around me did it with this mentality and just regret waiting for so long before surgery.
Hope it can help :)

[ckelley]

Very helpful video. I have been taking Methimazole for 20 plus years with no issues but recently have developed low platelets. I was told this can be a side effect but I feel like I should be getting other tests to pinpoint the actual cause rather than just being told it's likely the medicine. Maybe it is but I worry there could be something else causing the platelet issue that may be overlooked. In addition, I don't want to stop taking the medicine not knowing if it really is the cause of the problem. I don't want surgery or the RAI. I'd like to just continue with the low dose I am on of Methimazole. Any input would be appreciated.

[heartpaws]

Took PTU on/off over a period of 20 years before thyroid "burned out" and became hypothyroid. Constant battle w/my Endo who wanted to do surgery. My reason for doing it was to put off the inevitability of eventual hypothyroidism. Glad I held my ground - since becoming hypo I don't feel like the same person (ADD, lethargy). Levothyroxin is NOT a sufficient replacement. Highly recommend long term anti-thyroid meds.

[truth]

Amazing and thank you for great information!!!! Just diagnosed w Graves’ disease and will stick w methimazole

[ism]

Diagnosed with graves 6+ years ago in my 20s. Always felt so pressured into surgery - glad I held my ground. But also caused me to never want to get it fully balanced as this was a fast track to surgery. Never felt sick enough to trade hyper for hypo.

[MD]

Thankyou, very informative. I am being rx’d with methinazole 2.5mg po qd since May. My earlier TSH was < 0.03. Since my rx with anti thyroid med my TSH is 2.24 with normal T3 & T4. My initial antibody level was 149. Have not had another level drawn.
I feel much more confident with long term antithyroid rx…….. Thankyou again, very helpful!

[karkars]

I took it for 4 years and then my levels started going down so my Endocrinologist lowered it. Slowly it kept going down and after 5 and a half years I off the medication completely. It’s been almost 4 years and my levels are still normal.
One think I did develop during the time on the medication was vitiligo. I have it mainly around my hairline and neck. My Doctor says it could be from hyperthyroidism or the medication.

[yetanotheruswntmemepage]

Thank you very much for sharing this video. As a young woman with Graves' disease (18 years old) I appreciate the frank and thorough discussion as I consider treatment options. I need all the advice I can get!

[eveningstar]

PLEASE talk about a GI Map. Fixed my gut biome = grave’s healed!

[tesfayegebre]

Thank you for discussing the long term use of anti-thyroid drug (ATD). was diagnosed with hyperthyroidism about 15 yrs ago. Because it was mild and did not have symptoms on the eye, my endo put me on ATD with the hope it would result in remission after gradually decreasing the dosage. I was off medication once but my TSH started to climb up and I am back to taking the ATD. My endo believes I may go into remission one day and this video raised my hopes a bit. As the doctor mentioned, the area of immunology I think gets to the root of the problem and I am thinking about what I can in that area to get remission. 🙏🙏🙏

[sonikathakran]

I have been on neomarcazole for 8-9 years and I do want to consider it long term although doctors are suggesting RAI. Thanks for this video.

[oluchinwagboso]

Thank you for this. Its very insightful and helpful. Gives me context for how I want to handle my care

[judithpoulin]

When will modern medicine give a $&#@ about root cause? Autoimmune conditions are due to undiagnosed infections. ID and treat the infection - autoimmunity will disappear. God forbid Drs look into holistic approaches.

[dondiilagan]

I started taking ptu in 1994, i just stopped 2001. I was 29 then. Never had any symptom til now.

[JuneRobinson-hd]

And had radiation iodine treatment in this year I've been feeling terrible and nothing seem to be working not even the medication

[bko]

I've been on medication for 18 months and I'm so done with feeling anxious every day. It's affecting my job and sanity. I'm going to ask for the surgery at my next endo appt. I need my life back.