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in reply to: Did it! TT done!! :) #1176792
WOW, I have such mixed emotions after reading all of your wonderful stories! I am a 44 year old woman diagnosed in August ’09. My long journey has been just like everyone else’s…up and down and very difficult. Since January ’10 I have only felt “normal” once, for a couple months. I will try to keep this short because I have more questions than answers and want to hear more than I want to say, but face it, none of our stories are short, so I hope you all can bear with me. Let me first say, I was only diagnosed because I was having constipation issues and the gastro doc wanted to rule out hypo. But instead began my GD journey to hell. Since I was not presenting with any of the hyper symptoms at that time, I did not seek treatment. I did see an endo to confirm my diagnosis but I did not like him and did not go back. I decided immediately that medication was my treatment of choice and at the time refused to entertain any other option. When I finally stared presenting serious symptoms almost a year later, I saw a colleague in his office. She was not a thyroid specialist, but I figured she knew what she was doing being in the endocrinology department. She started me on 30mg/day of methimizole. I respond very quickly to the meds but she did not decrease me quick enough and within 6 months I was severely hypo and had gained 30 pounds. I immediately went to my PCP who took me off methimazole and put me on antidepressants to help me with this new misery of of being hypo. Then began my search for a new endo. I found one a few months later and love her. She has been treating me now for a year and a half and has done a great job. She is very patient-centered and her only concern is my well-being. She started me on 30mg/day and within 3 months weaned me down to 10mg/day where I have been for almost a year. Over the summer (’12) was my best time since being diagnosed. In July my T3 & T4 levels were perfect, but my TSH still almost non-existent, but I felt so good and normal over the rest of the summer, I didn’t seek another appointment until December…and it turns out, I was in remission!!! My endo said that now was the time to make those final adjustments as I was teetering towards the hypo end of normal and she wanted to keep me in remission. We are now making those minor med adjustments and have been at 10mg, 5 days/week and guess what, I am miserable again. My emotions are all over the place, my thermostat is broken and I’m losing hair by the handfuls. I never lost the entire 30 pounds, but did lose 15… that has now come back. I am always tired, bitchy and on the verge of tears. Oh, did I mention I have not had a libido for the last 3 years. My husband and I have been discussing my alternate treatment options because I no longer like this ride. And that decision is soooo hard to make. I had an appointment today and my TSH, T3 & T4 levels are still about the same, normal, but she is concerned about my antibody levels and that I am still moving toward hypo but having some “breakthrough” Graves symptoms. So we readjusted my med intervals. Now I will be taking 10mg every other day. She also prescribed atenolol to see if that would help me get a good nights sleep and curb a bit of the lethargy and moodiness. I mentioned a more permanent solution and she said “not yet”. She knows how I felt about it before and is really trying to keep me in a good remission state. As it is the dead of winter in New England, I have decided this is not the best time for me to make this decision. So I will follow doctors orders and go back to her in 6-8 weeks and see where I am at. Now that I have read your stories, I long to feel normal again. To not have the constant up and down moods. To not be losing clumps of hair every day. To not have to put a blanket on, take a blanket off; turn the heat up, turn the heat down. To be able to lose at least that 15 pounds again. To be me again! After reading such positive results I am no closer to knowing which road to take, but know that I will probably walk a new path sometime this year. I don’t yet know which choice to make but hope that you will all continue posting to this thread. I find this to be so frightening, yet so enlightening and I hope that through all of you I can make the best choice for me. Thank you for you positive experiences. I know there is hope, but it’s not easy to get there.
Well, my endo, as wonderful and knowledgeable as she is, does tend to be a little quirky and recommends an alkaline diet… which is really unreasonable for me and my family. It is a true vegetarian diet which I don’t really think I need or want. I know it would probably work, but, do not want to make a complete lifestyle change. The last time I mentioned weight, she recommended some other diet which was also unrealistic. She did however discuss with me the mind-body-spirit-disease connection and we talked about the interconnectedness of it all and stress and hormones, etc., etc. So, I don’t think she has a good answer either. I guess I will just keep doing what I am doing and see if the summer weather and being outside helps. FYI, I didn’t mention that I am 42 and I know that in middle age this type of thing can happen, but I also know it doesn’t have to happen… so I will just keep exploring and trying things within my abilities. Thanks for the support!
After reading this thread, I feel a little discouraged and still quite unsure… I was diagnosed GD a couple years ago but did not begin treatment until Feb 2011. I was dealing with a Nurse Practitioner rather than the Endocrinologist, because I did not like him at all and he is the only one in my town. Being that thyroid was not her specialty, she was treating me strictly by the book starting with 10mg Methimazole 3x day. Well it turns out that I respond to treatment extremely quickly and within six months (August 2011) and 3 med adjustments I was so severely hypO that I had gained 25 pounds over my normal weight and had undetectable levels of hormones and my TSH was through the roof. I was so upset, discouraged and a little depressed when I saw those lab results and the 165 pounds, that I immediately dropped that NP and the office and called my PCP. She took me off the meds completely and put me on ant-depressants and we discussed a new Endo. I found a great one a half hour away and she kept me off the meds so she could figure out exactly what was going on. By December I had lost 15 of those extra pounds and in January it was time for treatment again. I have been working my rear off trying to lose that last 10 pounds and I am soooo frustrated. My entire diet has been modified over the last 6 months. I have cut my overall food intake in half (I have always been able to eat like a horse so I am still within a healthy caloric intake), we have cut carbs and fat dramatically and I exercise about 5 days a week. I usually do either some Wii Fit for 30-45 minutes or, in the last month, 20 minutes of power walking on the treadmill. UGH! I have not lost a pound since December! My problem is it’s all sitting in the mid section and I don’t know what, if anything, I can do about it. I started back on Methimazole 10mg 3x day in January. One month later I was down to 2x and at my appointment later today, I expect to be down to 1x. My labs this time around show my T3 and T4 within the normal range, although my TSH is still quite low. I also show the Graves Antibodies to still be running rampant with a very small decline since last month. All in all, I feel so excellent, better than I have for 2 years. If only I could shed this last 10 pounds. Do you think there is any hope of that??? As the medication decreases will that effect my weight? If I continue to level out and stay that way for a while, will that effect my weight? I will be posing these questions to my endo today but am interested in hearing others’ experiences. So sorry for the lengthy post but, I know I am not alone in this battle and appreciate being able to express these concerns to others who know exactly what I am going through. As wonderful and understanding as my husband is and has been, I was still beautiful to him 25 pounds heavier, so he doesn’t quite understand how weight effects a woman’s psyche. Thanks for listening!!!
in reply to: Effect on your Menstrual Cycle – Sorry guys…. #1065141Hi everyone, I just wanted to chime in to get a little feedback on this menstrual cycle issue also. I was diagnosed the end of 2009 but I didn’t have symptoms for a very long time. When I finally started having them almost a year later (in full force mind you), I went back to the endo and started taking Methimazole. I have been on 15mg/day for 3 months now and as of last week, my T3 and T4 are within normal range, but my TSH is still very, very low. My cycle has always been extremely regular, 25-27 day cycle for 3-4 days, my whole life. When I started having symptoms, my periods became very light. My regularity didn’t change but the flow and duration were about half. Now that I am feeling almost normal again, my last 2 periods have been at 19 and 20 days, lasting 4-5 days. I am feeling very normal otherwise, although I have gained a couple more winter pounds than usual, but do not feel hypo at all. So, is it the meds, or just a part of the messed up thyroid? This is not a menstrual schedule I want to have and I am hoping it will normalize again. Any words of wisdom? Thanks! Tracey
in reply to: Susceptible to other things?? #1072075Thank you everyone. I will just clarify and explain a few things. I saw an endo last year, once. At the time I was not presenting symptoms even though my blood tests revealed I was Hyperthyroid. (This was discovered by accident when another doc did blood tests for something else) During that one visit, the endo did a thyroid scan and did not find anything, so ultimately diagnosed me with GD. I was not yet willing to be treated because of my lack of symptoms, and I’m terrified that if meds don’t work I will nee RAI. Almost exactly 1 year later (2 months ago) symptoms emerged with a vengeance, the sweating, constant eating, heart palpitations, (severe) irritability and restless sleep. That was about the time I got my first cold. I called my PCP and she ordered new tests and found that my T3 & T4 levels had doubled since last year, so I made another appointment. Generally speaking I am in excellent health and rarely get sick, which is why I am concerned at the number of times I have been sick this season. I have told my PCP, that if I get sick again this season, I will be calling her to see if there is a reason, or if it’s bad luck. Thanks again for your feedback.
in reply to: Susceptible to other things?? #1072071Being that I only recently joined this site, I need to question/comment on this over a year old post.
I was also wondering whether or not GD makes one more susceptible to viral infections. I was diagnosed this time last year but haven’t started any treatment yet, but will in a couple weeks. I have always been a very healthy person. I have lived in NH my whole life and if I get sick, I get a cold of some type maybe once a year. This year though, I have been sick 4 times in 2 months, head colds, sinus colds and some weird sore throat/neck thing. Although I know that this cold season several people in my workplace have been sick more than once, I have never been one to get sick this often. Also, I have had the Herpes Simplex Virus for 20 years but have not had a breakout for over a year, until now. Along with the 4 times I have been sick, 2 of them have been accompanied by menstruation and a breakout, lucky me! So, is it that my body is weak from the GD or am I just unlucky this winter? I see my endo in a couple weeks and will discuss with him, but I was just curious about what all of you have to say about it and what your experiences have been. Thanks and I am so happy to have found this site!in reply to: Hyperthyroid & Perimenopause #1063229Well, I did get some more blood tests done. I am definitely NOT Peri- or Menopause, but my T3 and T4 have doubled in the last year and my TSH is about the same, almost undetectable. So, I have an appointment with the Endo in 2 weeks. Most of my symptoms have waned but I know they will come back and my PCP says it is now time that I get treated. I have my concerns about treatment (I too have the unreasonable paranoia of weight gain), but I know that not being treated is worse. I will check back on my progress. I am hoping that all around I will feel better, that I will stop eating constantly, I will get a full nights sleep for a change and not soak the sheets all the time, that my legs will stop itching, I will not get so cranky and snippy and that my poor husband can turn on the heat a little more. Oh, and I quit smoking a month ago and I rarely get the heart palpitations.
in reply to: Hyperthyroid & Perimenopause #1063227Thank you for your reply, it was very helpful. I will let you know how it goes.
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