This Is My Story! - Personal Stories - Living with Graves Disease


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This Is My Story!

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#1 MrsJessie2008


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Posted 05 March 2013 - 10:28 AM


Hello Everyone,


Hope all is well, I became a member on this forum to tell my story and just maybe be the supposrt for somebody else that I didn't have. I am a 26 yr old female that has been for the most part healthy and in 2010 I became ill. I wouldn't say like flu or cold type symptoms but just very fatigued and not myself. I went to several, I mean several doctors who checked all my labs couldn't find anything. The doctors kept telling me that I was just overweight and if I would lose a couple pounds then I would probably feel better. WOW! I did just that and still no improvement. Finally in Oct 2011 I found a new doctor through the hospital that I work for. She sat with me for at least 1-2 hours listening to all my symptoms and almost with a puzzled look she said, "has your thyroid levels every been checked?" i said yes and they were normal. I had them checked because my mother suffers from hypothyroidism and she wanted it checked. The doctor explained to me that sometimes thryoid conditions can lay dorminant on lab tests. So low and behold we did lots of lab work. I will never forget the phone call, my doctor called me at work on my work number said for me to have a seat so we can talk. I knew something was wrong at that moment. She said that I for sure had a thyroid problem. She said that my TSH level was not even reading. My thyroid was way out of whack. She then proceeded to tell me that my labs indicated Graves' Disease and I would need further testing and would need to be treated by an endocrinologist. She sent all my stuff and referred to a really good endo, I had a thyroid uptake scan and that was the deal breaker. The Endo doc said for sure Graves' and that I would be fine just needed to take my meds FOREVER!!! At the time I wasn't quite grasping what was going on I began taking Tapazole 10 mg BID and Propanolol 25 mg daily for the rapid heartbeat that the hyperthyroid was causing me. After about a month I started to feel a little better, kinda like seeing the light. I thought wow finally I feel like me. Went and had lab and thryoid levels were showing that I was hypo now so endo wanted to take me off meds to see how I would do. One month later repeated labs and got the call that I was in remission. I was so excited and just couldn't believe it. 2-3 months went by was feeling good but I noticed a knot on throat area. I didn't really pay it any mind at first but it was getting bigger and tender. After about a month of this going on I finally made an appt to see my original doctor (PCP) and she said that it felt like a goiter and she wanted to do an ultrasound. Had the u/s done about 2 weeks later and when the results came back she called me at work again and told me she wanted me to go somewhere where I could have privacy and could sit. She said the u/s indicated cysts throughout the thyroid and the thryoid itself was possibly the start of cancer. She said that if I left the thyroid in it would only grow and the chances of it becoming cancer were very high. She never gave me an alternative just said we need to get it out and SOON! She scd me with an surgeon and within a month I was on the operating table. I had a complete thyroidectomy on 8/2/12 and recovered well. I thought that I would just have to be on Synthyroid forever but NO I had complications. Within 2 weeks of my discharge I ended up in the ER with severe hypocalcemia. The ER thought I was having a stroke, it was terrible. I couldn't speak and my hands and toes were stuck. I thought I was at the end for sure. Hospital stay for 4 days and went back to work within a week. Seem to be doing fine. Long story short since August I have had dozens of ER visits and hosptial stays. During my thyroid surgery the parathyroid were completely damaged, one was repaired and put back in but the damage was too much. So now I have no PTH and I have no thyroid. Who would've thought. The oral medications that the Endo doctor put me on for the calcium were not helping so I had to have a port put in for IV infusion of calcium every week. This past year has been everything that I wouldn't even want my worst enemy to go through. I have had so many moments were I broke down and wanted to give up. I have two small children that I found myself having a hard time just being mom to. I wanted to give up but my mom told me NO that this wouldn't be forever and to just keep praying. I have learned to adjust and accept my life, with or without my complications. I have life and that is enough for me. I feel like God has put this on my door step to help other and to share my story. Here I am today typing this brief story of my life for the past 2-3 years and I began to cry. Couldn't be a better way to end this but with that I had my weekly lab draw yesterday and I am finally stabilized. My calcium and thyroid levels are stable for the first in years. I have not been to IV therapy in over 2 weeks. It is nothing short of a miracle. To all the thyroid suffers out there all I can say is never give up faith. GOD is truly amazing and he will never let me or you down. Thank you everybody for reading my post.


#2 jodileanne


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Posted 21 June 2013 - 11:09 AM

Thank you for sharing your story. It is inspiring to see that you have such hope and courage. I have Hashimoto's and graves. My mother has Hashimoto's and had a thyroidectomy in 2008. She also had damage to her parathyroid and has to take a lot of calcium. Her story is much like yours. I will hafta share your post with her. Again thanks for sharing your story my thoughts and prayers are with you.

#3 Sonj71


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Posted 01 July 2013 - 01:47 AM

Thank you for sharing this, it made me cry, too. It is such a long & drawn out disease & everyone wants to know "when are you going to be better"? They mean well, but it is taking me ages & I am only 8months in!

#4 Zeze


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Posted 21 August 2013 - 09:42 AM



I am new to this site and forum and everything.  I have been diagnosed with Graves disease... after being misdiagnosed with "eye infections" twice.  I have lab test results that show I am hyperthyroid; however, and thank God I do not experience any other symptoms but my "bulky eyelids and eyes" and my blood test results, of course.  I was put on Methimazole in late May, first with 20mg. a day for six weeks, then with 10mg a day for the rest of the time.  I felt a difference in my eyes... and my lab tests came up normal.. this was all with my Primary Care Physician.


I was finally able to find an endocrinologist last July and after examining me, he left me on the same dose of MM.  He told me the drug's side effects and made me sign a letter of understanding that if I ever experienced any of the symptomps described, I would go to the emergency room.  This really scared me.  Then he added that the MM "had no effect whatsoever in the way my eyes looked, that that was just a psycological answer I needed to find to reassure myself."  After hearing this, I went home very distraught and feeling lost.  I have never in my life been on medication. I am 47 and had excellent health all these years.  I do not drink or smoke, I watch what I eat and I exercise.  I have been in a difficult family situation in the last year, and I thought the stress had something to do with my disease, but the endocrinologist told me "stress has nothing to do with Grave's".


I stopped the Methimazole the same day I went to see the endocrinologist, without his supervision, of course.  I did not want to continue with a medication that would cause me more damage than benefit, in my opinion.  I felt better... without the medication.  When I take the medication now I get headaches, intolerance to heat, palpitations, my eyes get red, irritated and protruding... I feel so lost! My endocrinologists wants me to go on 20 mg of Methimazole now, but I do not want to take such a high dose of medication. 


I must add that I had no other symptoms when I was diagnosed.  Just my blood test results after my physical.


Thank you for reading.

#5 Misty


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Posted 22 August 2013 - 11:18 AM

Hi and welcome! I moved your story over to the main Graves' forum, where more people will see it. You can also get lots of good info and ask questions at the site of our medical expert,


Best wishes,

Yvonne, remission and good health since 2005 is for educational purposes only and should not be used as a substitute for consultation with your health care provider.

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