# Does remission from Graves last?



## Asha (Apr 22, 2015)

Interested to know how many people here successfully in remission from Graves - no medication? I am looking at my long term. I am unsymptomatic right now but on and off meds. Second time off meds and I see very shortly doc going to put me on them again probably. At some point he is going to raise about radioactive therapy or maybe even taking my thyroid out. I am obviously not too keen about any of these. Not going to be pregnant in near future and liver functioning fine, what are indications of using PTU, carbinazole, neomercazole.....for long term basis? If I take my thyroid out I will just be swapping one med to another and for life. Radiotherapy I hear they rarely dose it right so you end up taking thyroxine as well for life. At least if I keep on hyperthyroid tablets, there is still a "chance" I will be in remission or go completely away!


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## Andros (Aug 26, 2009)

I have never seen or heard of permanent remission. Because that is not the definition of remission.

In any case, you may wish to take your doctor's advice for on the long haul, you are allowing your body to deteriorate.

We are here to help you w/replacement meds. I would say the majority of us, if not all of us are doing great. It will take time to heal but we are here for you for the duration.

Sending hugs your way!


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## VFRgrl (Feb 15, 2015)

http://www.ncbi.nlm.nih.gov/pubmed/25140995 Remission is possible for Graves, but not sure factors.

http://www.ncbi.nlm.nih.gov/pubmed/22827783 "Long-term MMI (Methimazole) treatment was superior to RAI therapy in patients with diffuse toxic goiter when mood, cognition, cardiac function and occurrence of thyroid dysfunction were compared."

http://www.ncbi.nlm.nih.gov/pubmed/19092290 "Antithyroid drugs may be proposed as the firstline therapy for hyperthyroidism due to Graves' disease since some patients undergo prolonged remission after drug withdrawal. On the other hand, some studies, though controversial, indicated that methimazole (MMI) has some immunomodulating activity. We retrospectively analyzed 384 consecutive patients newly diagnosed with Graves' disease in the years 1990-2002 to ascertain whether long-term therapy with low doses of MMI may prevent relapse of thyrotoxicosis. Two hundred and forty-nine patients were included in our study. The date of reduction of MMI dose to 5 mg/day was considered time 0 for survival analysis. In 121 MMI was discontinued in less than 15 months after time 0 (group D), while in the remaining 128 a daily MMI 2.5-5 mg dose was maintained (group M). One hundred and thirty-five patients were excluded for inadequate response to MMI, relapse of thyrotoxicosis that could be related to an improper withdrawal or reduction of MMI, inadequate or too short followup, iodide contamination, steroid or interferon therapy, pregnancy or post-partum. D and M groups did not differ for clinical and hormonal parameters except age, which was lower in D (p=0.019). Age > vs < 35 yr was relevant in survival analysis; therefore patients were divided in 2 groups according to this age cut-off. In younger patients relapse of thyrotoxicosis occurred in 15 patients of group D 2.4-39.6 months (median 19.0) after time 0, and 8 M after 5.9-40.0 (21.3) months, while 14 D and 5 M maintained euthyroidism until the end of the observation after 31.8-95.3 (56.6) months and 30.4-62.1 (46.5) months, respectively. Survival analysis indicated that the risk of relapse was similar in group D and M. In older patients relapse of thyrotoxicosis occurred in 40 patients of group D after 8.2-65.8 (25.4) months and 29 M after 5.8-62.5 (22.4) months, while 52 D and 86 M maintained euthyroidism until the end of the observation, 20.1-168.0 (46.7) months and 24.1-117.4 (53.4) months respectively. Survival analysis indicated that the risk of relapse was increased in group D. Therefore long-term treatment with low doses of MMI seems to prevent relapse in Graves' disease in patients above 35 yr of age. This should be confirmed in a prospective study."

Methimazole treatment is the FIRST treatment option in most countries outside the USA. They do not often do RAI, and surgery is their last option (general). If your liver values and immune system can handle it- long term treatment has been fine for lots of people. Remission IS possible based on my research- but the biggest key is finding a Dr. who will work with you on getting the autoimmune part under control. Its your anti-TSH receptor antibodies that need to be monitored and you need to get your body in the right place- reduce food allergens, environmental allergens, toxins, etc. Research, research, research. It is possible- but doesn't happen for everyone. There are risks/benefits to all treatment options involved.

There are lots of scientific articles that will give you an idea of the chances you will go into remission (ie going hypothyroid while on anti thyroid drugs is an indicator you can achieve remission).

Lori


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## webster2 (May 19, 2011)

This is my own personal opinion. My endo figures that I had Graves for 20 years before I was treated. During that time, I had definite episodes of Graves at work. I think antibodies ebb and flow on their own, but permanent remission...IHMO, no. I wish Graves had been diagnosed, & treated, when I had my first surgery.


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## Lovlkn (Dec 20, 2009)

Remission is usually more a case of the disease reducing it's activity and is usually short lived based on all the stories I have heard.


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## graves84 (Oct 7, 2013)

You can see my story in the signature. I was off meds in remission many years, but sadly it didn't last. My thyroid was knocking itself out day by day. I'm now new to the hypo world which is almost as bad as Graves. At least though, I can worry about my heart rate less now. It's a trade off.


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## AngeInBoston (Oct 14, 2010)

Hi Everyone, it's been exactly 5 yrs since my daughter was diagnosed at age 11 in a very bad state of Graves after a year of many, many doctor appointments for various symptoms. It took approx 1 1/2 yrs to stablize her to the point of being weaned completely off Methimazole and said to be in 'Remission'. Lingering side effects included pretty extreme Social Anxiety which cause problems at school, the fear of going to school because she thinks everyone is judging her or laughing at her, and Body Dysmorphic Disorder, which now officially falls under the umbrella of Anorexia, because she thinks she is horribly ugly, every little part of her body is ugly. So although she was in remission, it wasn't gone. But we continued on with our lives, trying not to think about it too much, rather naively, with checkups every 4-6 months, or a quick run to her PCP for a blood or throat check if she had a sore throat or a fever that got high. Then suddenly after 2 yrs, in April 2014, right after seeing her Endo and her blood being a bit off, it went crazy much faster than expected, and she hid her extreme anxiety and depression, and attempted suicide! It was an extremely lucky stroke that I found her and realized what was happening instead of just letting her sleep like I had been previous morings because she had been feeling so rotten. My Guardian Angel was looking out for me that morning. She had taken over 150 pills and barely survived. She spent time in Boston Children's Hospital, then about 6 wks in 3 different psychiatric hospitals. Along the way, I realized something was very wrong with her and demanded blood tests (Oh we don't do that here---from one barely out of college counselor!) Turned out her body had turned against Methimazole and she had the White Blood Cell count of an end stage Cancer patient! She recovered from that without another relapse, so she has been in 'Remission' now for about 15 months. But still with all of the mental health issues. We just saw her Endo a few days ago, and she actually said she thinks my daughter might be turning more into Hashimoto or Hashitoxicosis ??? Or that that was what the episode last year was? I'm kind of confused. She took 5 vials of blood to test for alot of things, including Celiac Disease, which has been tested before, but you never know she said. She also pointed out how once you have one Auto Immune disease you are vulnerable to others. For a solid year my daughter has battled "Mystery Hives" that randomly come and go all over her body, we went to many different Drs, but it was declared Mystery Hives, which are a real thing. They slowly wound down, less hives, farther apart, and now hopefully are gone.

So In conclusion, I think remission is just temporary....but can Graves really change to Hashimoto's? Aaarrrgh.


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## Lovlkn (Dec 20, 2009)

> So In conclusion, I think remission is just temporary....but can Graves really change to Hashimoto's? Aaarrrgh.


If TSI antibodies are present and TPO antibodies are present - the thyroid will eventually burn out. Who knows how long this could take. The physical and mental events that occur when this is happening are not healthy for anyone.

Surgical removal is the cure - remove the thyroid and the problem goes away. The next issue is finding a doctor to properly replace you.

In the case of a child - Block and Replace is a excellent option to try and attain remission. Google Boatkitten, She posted on another website I've been on and had a son who reached remission doing block and replace.


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## graves84 (Oct 7, 2013)

This sounds so similar to my story. I was 13 when diagnosed with Graves and was so sick I had to be homeschooled for two years. I was up and down on so many meds I gained and lost 70lbs in a year. I believe that it started my body image dysmorphia which turned into a full blown eating disorder six years ago. I am in recovery but still cannot be weighed at the DR because it is a trigger for me.

I was also in hyper remission for many year on no medication at all. I now am hypo but told it's not hashimotos. I am now taking armour and feel like crap because I am just starting to raise grains to make match my old meds.

I suggest you keep bothering the Dr's or find one who knows what they hell they are doing. Also get her in therapy asap for the eating disorder issues. I do believe the thyroid controls moods as well and I have depression issues when my levels are off.


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## Octavia (Aug 1, 2011)

AngeInBoston, let me preface this by saying that I have no children, nor do I have any firsthand experience with Graves.

That said, I've read many people's struggles with Graves on this discussion board. Based on what's been shared here (not necessarily in this thread), if I had a daughter who was struggling like yours, I believe I would give serious consideration to surgical removal of her thyroid. It seems to be doing her a LOT more harm than good at this point, and she is at such an critical age. Being a teenager is difficult in the best of circumstances, but she seems to be struggling with soooooo much more than the typical teenage issues. I really feel for you two....it must be extremely difficult.

From what I understand, removing the thyroid removes the target of the Graves attacks, so the antibodies calm way way down. It also enables you, your daughter, and her doctors to far more easily control her thyroid levels, simply because she'll be off the thyroid hormone rollercoaster. Once the antibodies calm down, she'll be very much like any other thyroid-less patient, most likely taking one of three options for medication: 1) Synthroid only, 2) Synthroid plus Cytomel (if she needs T3 supplementation), or 3) Armour Thyroid.

I think another advantage of removal is down the road...when she's ready to start a family. It seems that Graves patients have far more difficulty getting pregnant and keeping the pregnancy than the average woman.

Might be worth considering. Has your daughter's doctor brought up the possibility of surgical removal?

EDIT: Perhaps since she's young, there are more/different factors to consider that I'm not aware of. Then again, perhaps since she's young, it's the perfect time to get her body (and mind) back on the right track. I would love to hear from others with more firsthand experience on this.


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## AngeInBoston (Oct 14, 2010)

Thank you all for your perspectives. At her last appointment last week, at her Endo at Boston Children's Hospital, I brought up the fact that we had decided to consider Surgery if/when she has her next relapse instead of RAI. This was because after last year's relapse and the rejection of Methimazole, she had told us to have a plan in place so we would be educated and know what to do with a clear head. At the time we went for a consult with a Dr. who does RAI, because of her Body Dysmorphia she didn't want the scar on her neck. But now she (and I) have decided the scar wouldn't be so bad, along with the risk of nicking something else inside, because the radiaoactive iodine scares both of us. However she said she may never need either, since she now thinks her symptoms seem to be more Hashi...I'm confused. I have not considered, nor was it suggested for me to consider, removing the Thyroid while she seems to be stable. I will keep this in mind and maybe give the Dr. a call...meanwhile I will keep bringing her to Therapy and watching out for relapse.

Thank you everyone!

Ange


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## jenny v (May 6, 2012)

I was embarrassed about my scar for a while (I don't know why since I was totally prepared for it and I'm very open about talking about my thyroid problems and surgery) but you can hardly see it now and I actually think of it as a badge of honor, in a way. I survived that whole mess and I'm a whole lot stronger than most people I know for getting through it. Plus, it's like a mark of a secret club--anytime I see a similar scar (or someone recognizes mine), I find a new friend, lol. I met a lady recently in my ENT's office with the same scar and we bonded over our thyroid experiences.


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## Lovlkn (Dec 20, 2009)

> At the time we went for a consult with a Dr. who does RAI, because of her Body Dysmorphia she didn't want the scar on her neck. But now she (and I) have decided the scar wouldn't be so bad,


Depends who does the surgery -

My scar is 3/4" and barely noticeable.

My surgeon was trained at the Cleveland Clinic and straight out of residency 10 years ago when mine was removed.



> However she said she may never need either, since she now thinks her symptoms seem to be more Hashi...I'm confused.


The issue may become, that she never feels good - as long as the thyroid is inside her and she has TSI and TPO antibodies attacking it - it will be a toss up as to how well she feels.

Ange - do you have any labs you could share with ranges, and med's she was taking at the time of draw.

Also, does she take med's prior to the draw or after?


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## webster2 (May 19, 2011)

I love my scar. It reminds me that I am strong. Mine is an old school whopper of a scar very low on my neck. These new scars are barely noticeable.

Best wishes for your daughter & you.


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