Doris' story - Personal Stories - Living with Graves Disease

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Doris' story


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#1 Jeffrey Roberts

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Posted 01 February 2010 - 11:12 AM

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My name is Doris. I am also known as K9Mom on our community support board at Living with Graves Disease. Feel free to join us there to ask questions or share some fellowship with other Graves' disease patients.

 

I was diagnosed with Hyperthyroidism in April of 1999, at the age of 39, through a routine new patient blood workup done by my General Practitioner. I had made an appointment with this GP because of bothersome, persistent peeling of the bottoms and sides of my feet. When the routine TSH test that was done on me came back with a below normal range reading, my GP referred me to an Endocrinologist and told me that the low TSH (0.03) indicated hyperthyroidism and that I either had Graves disease, Hashimoto’s disease or cancer! The 2-month wait to get into the Endocrinologist was grueling. I used the time to do some research on hyperthyroidism. I saw myself in the symptom list. For quite some time I had suspected that I was going through some sort of perimenopause due to hot flashes, mood swings and sex drive fluctuations, but my Gynecologist had made me believe that this was not possible, so I chalked it up to aging and tried not to dwell on it.

 

On my first visit to the Endocrinologist, in June of 1999, after lab work was drawn, I was given a patient information sheet on Radioactive Iodine Treatment, commonly referred to as "RAI". My Endocrinologist, without having the results of my labs that he just drew, wanted me to take this radioactive treatment for my hyperthyroidism. Looking back, I fortunately had a very full summer planned with 2 trips that could not be cancelled. Because of my upcoming trips, my Endo and I decided that I should start anti-thyroid medication (Tapazole, one of the ATD’s) and continue on with my planned trips. I was to get a WBC, liver enzymes test and thyroid labs done the day before I left for my trip and fax it to my Endo. I did this and the Endo called me to increase my dose of Tapazole. I was to see him when I returned.

 

In July, when I returned from my trips, I saw the Endo again. I got my blood drawn a week BEFORE my visit and we both had copies of my labs when I met with the Endo. The July labs showed that I was responding well to the medication so my Endo and I decided to continue with this treatment. (Another reason for my refusing RAI was that I had read the patient information sheets that he had given me and realized that I could not be around my elderly, dying Shih Tzu for several days if I took this treatment. This was therefore NOT an option for me). I also did some research on my own and decided that RAI was not for me due to several factors. It made no sense to me to trade hyperthyoidism for permanent hypothyroidism which is what RAI does. It was around this time that I asked my Endocrinologist what was the CAUSE of my hyperthyroidism. He told me that he “suspected” it was Graves’ disease. I wanted to know definitively, so I asked for antibody testing (many thanks to Elaine Moore's articles on the internet which taught me about the autoimmune nature of Graves'). At this time, I did have TSI antibodies, but they were at 89% (normal is less than 130%). I suspect that my antibodies had gone down due to the fact that I had been on ATD’s for a while when this test was done and ATD’s will lower the antibody count. I have remained on the anti-thyroid medication since June of 1999 except for a brief period when I was severely overdosed on the Tapazole and taken off the medication completely for a short period of time while I searched for a new Endocrinologist.

 

ATD’s are miraculous medications for those of us who need them and they are powerful. They work for those of us that are hyperthyroid by inhibiting the production of new thyroid hormone. They are also a mild immunosuppressant, therefore they work to reduce the antibodies causing our Graves’. I naively followed my first Endocrinologist instructions to the letter regarding the dosing of my Tapazole. I had appointments every 3 months with new labs run the week prior to my appointment. During the winter of 1999 I began to get very, very tired. I found it hard to wake up in the morning and even harder to make it through a full day of work. My hands and feet were FREEZING most of the time…they would not warm up. I also gained 20 pounds during this time period. I was depressed, emotionless and had retreated to a world within myself. My hair looked “dead” as one co-worker described it. I felt “dead” myself and at this point thought that the treatment for my Graves’ disease was worse than the disease itself.

 

I think it was about this time when I got serious about keeping track of my lab results myself. This was the KEY to my getting better. When I requested copies of all of my original lab reports I found that my Endocrinologist had INCREASED my Tapazole dose when my lab results showed that I was entering a HYPOthyroid state - a sign that my dose should have been DECREASED. This medication increase sent me deep into HYPOthyroidism...a place where I NEVER want to go again! By my next doctors appointment, after the medication increase, my TSH was 14.4 and my FT4 was a mere 0.07!!! This is dangerously close to a myxedema coma...and I felt like I was one of the walking dead!

 

I have since learned that many more people die of myxedema coma than die of thyroid storm. I was seriously ill and my health was in serious jeopardy during this time. My Endocrinologist was NOT monitoring me properly or he would have caught that my TSH was too high and my FT4 was way too low prior to the last Tapazole increase. He should have DECREASED my Tapazole at that appointment! When we got the results of this blood work, my Endo told me to discontinue taking the Tapazole for 5 days. When I saw my test results I knew that I had to find a new Endocrinologist, that obviously this Endocrinologist did not have much experience dosing and monitoring patients on ATD’s. Changing Endo’s was one of the best decisions I made.

 

My new Endocrinologist restarted me on Tapazole but this Endocrinologist did things differently. My new dosing schedule was to take much smaller doses of Tapazole 3 times a day. (I went from taking 15mg of Tapazole ONCE a day to taking 2.5mg of Tapazole THREE times a day for a total of 7.5mg per day) As the medication worked, I required smaller and smaller doses. I remained stable on a small dose (2.5mg) of Tapazole for almost 2 years. Today I take 1.25mg of Tapazole a day and plan to test my TSI antibodies in the fall, if they are low enough, I will wean completely off of the Tapazole. I have been taking Tapazole for 4 years and 2 months. I have had no adverse reactions to the medication and the only bad experience I’ve had was going extremely hypo due to being overmedicated by my first Endo.

 

I believe that the single most important thing someone with Graves’ can do for themselves to help their journey and help themselves heal is to EDUCATE themselves about the disease, it's treatment options, diet – specifically iodine’s impact on thyroid hormone, lab tests and proper monitoring of patients. You, the patient, are the KEY player in your getting well again.

 

Please know that you are not alone, there are many of us out here that have been where you are now...things DO get better...MUCH better. Read, read, read all you can about Graves. Make sure that you are giving your INFORMED CONSENT when you agree to the treatment YOU choose, as some are irreversible. This is not an easy disease, there are both mental and physical symptoms to deal with. There is no "quick fix" for Graves, regardless of what you may hear. Graves is an AUTOIMMUNE disease and antibodies circulating in our bodies are responsible for the disease - NOT the thyroid gland. This disease will try your patience at a time when you may find that your patience is in short supply! Please remember this, it DOES get better with treatment.

 

UPDATE: I was stable on a low maintenance dose of Tapazole for over two years before I was weaned off of Tapazole July 11th, 2003. I remained in remission until January of 2006 at which time I relapsed hyper. I began taking Tapazole at a low dose and went into remission again in September of 2006. To date, as of April, 2007 I remain in remission and medication free.




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Posted 05 February 2010 - 08:36 PM

Doris,
I feel so much better after reading your story. I am sorry you had to go through hypo hell but I am glad you are in remission... Your story gives me hope.



#3 Just Me

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Posted 06 February 2010 - 07:42 PM

I want to say that this makes me feel better, as my endo says I am fine, and I am Freezing, I am so cold it is painful, my GP and Endo wanted to put me on anti-depressants. I am taking 2.5 mg of methimazole and 20 mg of propranolol. And they only check my TSH. Thank You for giving me hope again.



#4 K9Mom ~ Doris

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Posted 24 May 2012 - 05:37 PM

May 24, 2012 and I am still in remission. I'm living life and enjoying myself. It is my fervent wish that each of you that come here seeking knowledge and help with your Graves' have a similar outcome. Where you can look BACK at your current struggles and smile widely because you know that you are firmly on the other side of that battle. I wish I could reach in my computer, hold your hand and tell you that it's going to be okay. Take good care of yourself and make sure you have a physician that will work WITH you. Knowledge is power and you are already in the right place to gain that! BIG HUGS to everyone going through Graves hell today. I'm your sister-in-arms and if I can do it, you can too!



#5 K9Mom ~ Doris

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Posted 11 December 2014 - 12:15 AM

12/11/14 and I am still in remission!  



#6 mmztcass

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Posted 11 December 2014 - 03:07 PM

Hi Doris...!!!

 

Great to hear from you and so happy to read that you are doing wonderful the 2nd time around...!

 

{{{hugs}}}



#7 K9Mom ~ Doris

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Posted 21 March 2018 - 06:08 PM

Hello everyone! 

It's Doris/K9Mom, just checking in for an update on me.  It is March 21, 2018 and I am still in remission from Graves' Disease!  Crazy as it sounds I am grateful for my Graves ordeal as it taught me how to be persistent and being resilient.  It sure taught me how to be a smart patient and that has come in handy lately as I have been diagnosed with 2 additional autoimmune diseases - Sjogren's Syndrome and Rheumatoid Arthritis as well as Pulmonary Hypertension.  The latest diagnosis being very recent.  I'm digging in and learning all I can about my new path and finding a new way of eating that reduces inflammation and hopefully helps my body get a reprieve from these damn autoimmune diseases!

 

I hope everyone that is still here from my days of starting this patient to patient forum are doing well.  I miss the camaraderie we had and cherish those friendships.  To all the Graves patients I have not met, I wish you wellness and healing.  Love and light to all!







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