› Forums › Mucosal Melanoma Community › Graves disease
- This topic has 11 replies, 6 voices, and was last updated 5 years, 10 months ago by Sdsmith44.
- May 12, 2017 at 1:44 am
I finished ipiluminab 10mg in March with mild side effects (mucosal inflammation and bleeding, swollen lymph nodes, swollen tonsils, shooting temple pain) then two weeks later developed hyperthyriodism. After a series of test it was determined it was Graves' disease. My ENDO said he has never came across in his medical literature and connection between ipiluminab and graves. So now I'm at a decision point to treat the graves. I'm considering radioactive Iodine treatment to kill most of my thyroid. This is all because anti thyroid medicine would make me non deployable in my job field in the Marines for two years and my job means everything to me. Any other cases of graves in this forum? Any thoughts?
- May 12, 2017 at 2:08 am
The thyroid is definitely something others have experienced as far as getting impacted in some way on Ipi. Do you know why being on an antithyroid med would stop deployment as opposed to hormone replacement meds, which will be needed without a full functioning thyroid? Some people live without their thyroid entirely, so it doesn't seem unreasonable to go the route you're thinking of.
- May 12, 2017 at 2:23 am
Thank you so the my ENDO explained that the anti thyroid have risks and require primary liver and other test similar to pre chemo labs frequently. And thyroid replacement pills is safe unless you over dose of course, which makes you compatible with deployments even in austere environments. This is all new to me I was a perfectly healthy 26 year old a year ago haha
- May 12, 2017 at 4:15 am
Didn't mean to post anonymously… but that makes sense about the antithyroid meds. I was 28 when diagnosed.. been a year and a half of this madness for me so far, totally not what we planned on so early in life, right?! Hope the thyroid stuff gets sorted out for you and whatever decision you make about treatment doesn't hinder your job.
- May 12, 2017 at 2:39 am
Could you also provide some details on the tests used to come to this diagnosis?
Is your FreeT4 high? Or low?
Is your TSH being monitored?
I went right to hypothyroidism from Ipi and skipped the hyperthyroidism (my TSH and FreeT4 only went down and never up) but they aren't diagnosing my condition as Graves Disease.
- May 12, 2017 at 2:58 am
Initial labs from my Onc concluded My T4 was high, almost untraceable TSH. Had a ultra sound a week later and showed no enlargement or nodules. After that a radio active iodine was done and stated my uptake was 40% after 4hrs and 60% after 24hrs both super high! Images were consistent with graves. On top of that all the clinical hyperthyriod symptoms. But no eye issues to date.
- May 12, 2017 at 3:17 am
My pituitary gland swelled (hypophysitis) and stopped sending out TSH. The thyroid then stopped also and FreeT4 dropped well below the lower limit). Seeing an Endo next week to get a meds plan (temporarily taking 75mcg Levothyroxine until I get a plan from the Endo).
- May 12, 2017 at 1:17 pm
Thyroid dysfunction (often exhibted as simply low levels of T4 and TSH, though sometimes with initial high levels of one or the other) is sadly a very common result of immunotherapy – be it ipi or the anti-PD1 products. Perhaps your endo would benefit by seeing these:
Incidence of Thyroid-Related Adverse Events in Melanoma Patients Treated with Pembrolizumab. de Filette, Jansen, Schreuer, et al. J Clin Endocrinol Metab. 2016 Aug 29.
Immune checkpoint blockade is associated with endocrine-related adverse events. Thyroid dysfunction during pembrolizumab therapy, an anti-programmed cell death 1 receptor (PD-1) monoclonal antibody (mAb), remains to be fully characterized. Thyroid function was monitored prospectively in melanoma patients who initiated pembrolizumab within an expanded access program at a referral oncology center. 18Fluorodeoxyglucose uptake on positron emission tomography/computed tomography (18FDG-PET/CT) was reviewed in cases compatible with inflammatory thyroiditis. 99 patients with advanced melanoma (aged 26.3-93.6 years; 63.6% females) who received at least 1 administration of pembrolizumab. 18 adverse events of thyroid dysfunction were observed in 17 patients. Thyrotoxicosis occurred in 12 patients of which 9 evolved to hypothyroidism. Isolated hypothyroidism was present in 6 patients. Levothyroxine therapy was required in 10 of 15 hypothyroid patients. Thyroid autoantibodies were elevated during thyroid dysfunction in 4 of 10 cases. Diffuse increased 18FDG uptake by the thyroid gland was observed in all 7 thyrotoxic patients who progressed to hypothyroidism. Thyroid dysfunction is common in melanoma patients treated with pembrolizumab. Hypothyroidism and thyrotoxicosis related to inflammatory thyroiditis are the most frequent presentations. Serial measurements of thyroid function tests are indicated during anti-PD-1 mAb therapy. Thyrotoxicosis compatible with inflammatory thyroiditis was associated with diffuse increased 18FDG uptake by the thyroid gland. The prospective role of thyroid autoantibodies should be further investigated together with the histopathological correlates.
Nivolumab-induced thyroid dysfunction. Tanaka, Fujisaw, Maruyama, et al. Jpn J Clin Oncol. 2016 Mar 23.
Nivolumab (ONO-4538) is an anti-programmed death-1 specific monoclonal antibody, which has become a standard treatment for metastatic malignant melanoma. Nivolumab induces autoimmune adverse events, defined as immune-related adverse events. Herein, we report a case of nivolumab-induced thyroid dysfunction in the clinical setting. Fourteen patients were treated with nivolumab at our institute, of which three developed thyroid dysfunction, an incidence higher than previously reported in the initial clinical trials. Interestingly, one patient achieved complete remission; suggesting that in some patients, the occurrence of immune-related adverse events, including thyroid dysfunction, might reflect the drug's antitumour efficacy. No patient died or discontinued nivolumab treatment owing to thyroid dysfunction. Although thyroid dysfunction first appeared to be asymptomatic, two of the three patients developed symptoms related to hypothyroidism soon after, requiring hormone replacement therapy. Another patient developed hyperthyroidism that was initially asymptomatic; the patient subsequently developed myalgia with fever >39.5°C after two additional courses of nivolumab. Treatment with nivolumab was therefore discontinued, and treatment with prednisolone was initiated. Symptoms resolved within a few days, and thyroid function normalized. Thyroid dysfunction is sometimes difficult to diagnose because its symptoms similar to those of many other diseases. In addition, thyroid-related immune-related adverse events may present with unique symptoms such as myalgia with high fever, abruptly worsening patients' quality of life. Consequently, thyroid dysfunction should be considered as a possible immune-related adverse event. Thus, it is important to test for thyroid dysfunction at baseline and before the administration of each nivolumab dose if possible.
And there is this from the Yervoy web page: YERVOY® (ipilimumab) can cause serious side effects in many parts of your body which can lead to death. These serious side effects may include: intestinal problems (colitis) that can cause tears or holes (perforation) in the intestines; liver problems (hepatitis) that can lead to liver failure; skin problems that can lead to severe skin reaction; nerve problems that can lead to paralysis; hormone gland problems (especially the pituitary, adrenal, and thyroid glands); and eye problems.
There are many, many more similar reports out there. And…any side effect that anti-PD1 can do, ipi can do better! Hang in there. I hope your melanoma doc is more experienced with melanoma, its treatments and their potential side effects, than your endocrinologist seems to be (though he seems to be giving you appropriate treatment in spite of that!!!). At any rate, sorry your are dealing with all of this. Have two sisters who spent time in the Marine Corp! Semper Fi! Celeste
- May 12, 2017 at 1:21 pm
Hi Sdsmith 44, if you look at the Bristol Myer Squibb write up about "Yervoy" on there home page, section 5.5 they list one patient as developing Graves disease!!! Here is the link https://www.bms.com/patient-and-caregivers/our-medicines.html
- May 14, 2017 at 12:42 am
Hi- I was on IPI 10MG/KG back in 2008….experience temple/eye brow pain headaches and exhibited thyroid eye disease (graves-like symptoms but w/out the Graves antibodies present). Went on high dose steroids to keep the eye issues under control. Had flipped from hyper to hypo thyroid and back again. Finally got off steroids after 18 months with no more thyroid issues. IPI worked regardless of being on steroids as I was and am still NED. Fast forward to 2011 or so and I started having thyroid issues again – this time the anti-bodies test, along with FT4, etc tests all pointed to Graves. Some swelling of the eye muscles, etc. ENDO put me on Methimazole – 30 MG daily to start…have been tapering off ever since. Now taking 2.5 MG every other day. No eye issues at all and thyroid tests all show 'normal'. IMPORTANT: In addition to staying with my ENDO I am seen by a Graves specialist/Opthamologist. That specialist suggsted NOT to go the iodine pill route. Her experience and literature show that those with 'active Graves' disease can at times increase the Graves issues as a result of the idoine pill route. Her preferred method was for me to try to continue off and taper off Methimazole….and if that didn't work, then surgically remove the ENTIRE thyroid (not a paritial removal) and go on thyroid replacement. Current status: thyroid tests are within normal ranges; no issues with my eyes and continuing to taper off methimazole – slowly. About 2 months after each drop down in dosage I get a blood test to test TSH and FT4. Hope this helps…
- May 16, 2017 at 8:43 pm
Wow thank you for the info, So in a unexpected twist I took a thyroid panel last week because I was curious and my free t4 has dropped about 70% so my ENDO is now not letting me get any treatment and to see if it resolves on its own. Btw my levels gradually rose while getting treatment but I had no idea until I became symptomatic now I'm almost feeling normal except for a little jitteriness and exercise difficulty.
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