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Today is August 20th, 2010 and seven hours ago I took a pill that contained Radioactive Iodine for the treatment of Graves Disease. So far so good! I am alive, I am not glowing, my computers hard drive did not get wiped out and nothing is melting when I touch it! lol lol!!! The process was quick, easy and painless. Now that I am confined to the house for a few days I thought what a perfect opportunity to write about my experience in dealing with Graves Disease. Hopefully in sharing my experience I can help others who are newly diagnosed or even those who are currently dealing with this nasty disease.
In June of 2006 I was diagnosed with Graves Disease at the age of 27. At first I did not realize how much this disease was going to affect my life. The doctor told me the diagnosis and he made it seem like no big deal, so I shrugged it off and thought to myself I will take medication and be fine! Boy was that a wrong assumption. Prior to my diagnosis I was in a nine year relationship that ended very badly. Several months after the breakup I started noticing weird symptoms going on in my body. I had a racing heart, hand tremors, insomnia, massive weight loss despite eating everything and anything, bone loss, sweating, I could not tolerate the heat and my insides felt like they were moving at 200 mph. I did not think anything of the symptoms and blamed the symptoms on the daily stresses of life and the breakup. Now as I look back I believe the stress triggered the Graves Disease. Auto Immune Diseases run in my family, so I am almost positive that counts as a factor to me having this disease. I continued to ignore the symptoms until I had a family member accuse me of being on drugs due to the rapid weight loss and due to the fact that I was making a lot of inappropriate decisions. My family scheduled a doctors appointment for me and now the start of my journey begins with this horrible disease. Upon being diagnosed I was put on Methimazole and worked with my endocrinologist over the next couple of months with my dosing. He had told me about the RAI treatment and surgery, but we decided to try the medication route first. Over the next couple of months I started feeling back to myself and being naive to the disease i decided to stop taking my medication without talking to my doctor. I stopped taking the medication because I felt good. I thought to myself I am cured now and I don't need this medicine anymore. BIG mistake on my part!
In November of 2007 I went to the dentist and he was getting ready to put me under a local anesthesia. Well needless to say this did not happen because my blood pressure was 180/100. Being that my blood pressure was so high I was told to speak with my doctor immediately. I told the doctor I stopped taking my medication. He attributed the high blood pressure to the Graves Disease and not having the disease under control. Being that I stopped the medication he told me that most likely my symptoms were going to get worse and that I did more harm to my body by stopping the medication. He was right!!!! I started taking my medication again and over the next couple of months I felt worse then ever. I ended up going out on disability for a couple of months because it was so hard for me to function on a daily basis both mentally and physically. Over the next year I continued the ups and downs of the disease and was still naive to the fact that I had a life long disease. I did not want to accept that fact that I had something wrong with me. I was not diligent enough in keeping myself knowledgeable about the disease until October of 2008. I was at work sitting in a meeting and all of the sudden I had ringing in my ears, felt dizzy, lethargic, hot and my upper body got bright red. I left work and stopped to see my aunt who is a nurse. My gut was telling me to have her check my blood pressure. Sure enough my gut was right my blood pressure was around 200/110 she told me I needed to go to the emergency room immediately. When I walked into the emergency room and told the nurses my blood pressure reading they looked at me like I had three heads because at 29 years old I should not have blood pressure that high. They took me back and ran a bunch of test on me to ensure I was not having a heart attack or a stroke. They gave me medication to bring my blood pressure down. They believed the high blood pressure was due to the Graves Disease. However I was a little skeptical that it was related to the Graves Disease being that at this point in time my levels were in normal range. Anyways they put me on a blood pressure medication called Exforge and a beta blocker called Lopressor. Overall It was a traumatic experience for me due to the fact that they said I could have had a heart attack or even a stroke. Bingo! This was my eye opener that this disease is a lot more serious then what I believed it to be. It was now time to take this seriously and get my butt in gear in learning as much as I can about the disease and getting the disease under control. After a few weeks of being on the beta blocker it put me on the floor literally. The beta blocker had me so depressed that all I did was go to work, come home and lay on the floor and cry. Needless to say I contacted my doctor and he said I could ween myself off the medication. I felt a million times better once it was out of my body. Over the next couple of months i was feeling ok, but not great. Still continuing to takeMethimazole and Exforge and my levels are in normal range.
Then it happens again in February and March of 2009 I was rushed to the hospital for high blood pressure. They ran a slew of tests on me to rule out any other conditions that might be causing the high blood pressure other then the Graves Disease, which now at this point they are telling me they are not so sure it is the Graves causing the high blood pressure. After being in the hospital for 5 days the answer I received from the doctors were that they were "Baffled" and they don't know why I have high blood pressure. They told me to continue taking the Methimazole and Exforge, but raised the dosage. Anyways not the answer I was looking for. By this time I was so frustrated with everything that I just gave up. Over the next year and a half I started working on a major project at work. I took a break from dealing with my medical issues since majority of my time was occupied with work. Probably not the best thing to do, but I did continue to take my medication and see my doctor regularly. My levels continue to come back within normal range, but I would feel great for a couple of months. Then I would start feeling crappy for a couple of months and adjust my medication. This continued to be a vicious cycle of feeling great and crappy. I am now to the point where I have had enough and I don't feel like the Thyroid medication is working for me. In fact I believe its making me feel worse regardless of my levels being within normal range.
Right now I am experiencing extreme anxiety, fatigue, shortness of breath, tightness in my chest, joint pain and my emotions and moods are out of control. I saw my doctor on August 5th, 2010 she told me its time to look at the next treatment option. She feels its not good to be on Thyroid medication for more then 3-5 years due to the long term affects of the drug. Although this is a debatable. She said surgery maybe to risky due to my blood pressure problems, so the last resort is the Radioactive Iodine treatment (RAI). We discussed the RAI option and at this point in my life I feel like this is the right thing for me. On August 17th & 18th I had a thyroid scan and uptake and today August 20th I was given the Radioactive Iodine pill. I am trying to have a positive outlook from this point forward. I know this is not a cure for Graves, I know I need to be patient as my body goes through this change and I know their is a high chance that I will end up hypothyroid as this is usually the outcome with RAI. I hope I chose the right road, but only time will tell. I will continue to update this site on my experience with RAI. I hope I can share a positive experience vs. all the negative experiences you see posted on the internet. Good luck to all you Gravers and stay positive!!!
Feel free to contact me if you have any questions or just need someone to talk with. I live in the suburbs of Philadelphia and it would be great to meet others who are going through this for support. My email is lshantronl@gmail.com
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