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in reply to: 13 years of Graves, plan to TT, right decision?? #1180244
Hi mamama28, everyone has offered good advice! I had RAI and did have some hair thinning and weight gain (about 20 lbs), even though I have been eating very healthy, my weight was down to 119 lbs when I was in the throes of graves with a heart rate of 180 bpm, I had he muscle loss and wasting (not the good weight loss), but in the end it is all better than what I was experiencing being hyper, I would not want to go back to how sick I was. I have days of not feeling well and feeling depressed but my endo is wonderful and when I tell him how I am feeling, he acknowledges it and does not blow it off, he tells me everything that I am feeling is real and as a result of being very, very sick and it will take awhile to feel better again. Knowing that he understands and knowing what I am currently going through and feeling helps. Also having the support of the people on this website also helps, they listen, offer advice and are there to hear you vent on your bad days. Things will get better, it just takes time!
Good Luck on your journey,
Karen
in reply to: Hyperthyroid Symptom Question #1179898@Maryintx, I have a cardiologist who I really like and he has me on Pradaxa for the a-fib and Metropolol, 25 mg., if my heart rate goes over 100. I can normally tell right away when I am not feeling well. I keep a journal every day and record my heart rate and blood pressure about 4-5 times a day, at work and at home. I take my journal to the cardiologist so he can see the pattern. Its weird because it happens every 4 or 5 days and the rest of the days it is fine. My blood pressure, thank god, never shoots up, its just usuallly my heart rate. My cardiologist is on top of it and in September I go for another echocardigram so he can take another look to see how my heart is pumping. My husband has a-fib, not thyroid related, and he is Metropolol, 50 mg., twice a day and flecadine. The cardiologist stated that he tries to correct with meds before doing the more invasive cardiac ablation for my husband and I am not to that point yet and hope that I won’t have to be. My endo and cardiologist both think mine is thyroid driven where my husbands is not. ***crossing fingers***.
Karen
in reply to: Lowering Levothyroxine for Hypothyroid? #1180216Hi Bill, good to hear that you are doing well!!!! I could be completely off base here and by no mean even close to being an expert, but I remember when my endo started me off on Synthroid he said it would be a process to find that right sweet spot in dosing and they don’t want to give me to much and make me hyper again. Which thoroughly confuses me (not hard to do these days). He started me on .75 of Synthroid upped it to an extra .75 mg on Thursdays and then next visit upped it too an extra one on Sundays which put me at .88 mg., then upped it to 100 mg. So now I am on 100 mg daily. I guess there is an issue of not making you too hypo or hyper.
Karen
in reply to: Diagnosed @ 49 y/o #1179181@Shirley, I probably should have explained it better, but since being diagnosed with Graves and having RAI, I cut out caffeine and chocolate, have not drank pop in years and try not to eat red meat, I am trying to be more conscious of what I eat and being healthier, with that said, 15+ pounds in two months is a lot and my question for my endo was “wth”. I, as many other people work all day and have a longgggg commute each day so when I get home I am exhausted. I plan on starting yoga for the anxiety and as a means of exercise. I use to be a runner and I am still taking Pradaxa and Metropolol if my heart rate goes up above (100) lucky it has not. My cardiologist and endo think that the a-fib was as a result of the Graves Disease, Hyperthyroidism and Thyrotoxicosis and I go back in September for an echo of my heart to see how things are going. So I am trying not to over exert myself until the a-fib is figured out. I get up at 5:00 AM everyday and usually don’t sit down until 9:00 PM so I am not a couch potato, so I thought that was alot of weight in a short period of time. I usually eat a power bar for breakfast, salad and yogurt for lunch and try to eat a lean dinner. Of course a snack here and there but not 15 lbs. worth.
Yes when they admitted me to the hospital for two weeks, they were trying to get my heart rate down for most of that time. Initially, they were giving me Lopressor by IV every 15 minutes. Finally, after the RAI, it took about 2 months for my heart rate to come back down. It gets better, when the cardiologist released me from the hospital (I have since switched cardiologists) he released me on 200 mg of Lopressor 3 x a day and 40 mg. of Digoxcin 1x per day. They never told me my heart rate could go to low, duh, we had been worried for so long about it being too high, that one day I was walking into my dining room and boom, I passed out, my husband took me to the ER and my endo (god love him, on a Saturday afternoon) was there in an hour and admitted me under him, my heart rate was high 30’s and 40’s. The ER people slapped patches on me in case my heart stopped it would jolt it, uh, talk about freaking out. My endo took me off all the meds since my thyroid was calming down, so was my heart. Now, I still take the Pradaxa 2x times a day and the Metropolol 25 mg. only if my heart rate goes above 100 which it hasn’t.
Shirley, the greatest part through all of this was, my endo was so calming and kind and caring and kept saying everything will be fine, I will take care of you and he did!!
in reply to: Diagnosed @ 49 y/o #1179179@Boomer, I had RAI on 12/14/12. The first two months were a little rough because the thyroid hormones were still raging and dying off, but my heart rate did come down from 180 bpm, and hovered around the 100’s give or take a spike here and there. The tremors stopped and running to the bathroom stopped, thank god!! I began to sleep better and the insomnia started to go away. In March my doc wanted me to take Methimazole (sp?) but I said eh, lets wait it out another month, to speed up the dying thyroid, my bloodwork was still showing me hyper, but the numbers started coming down. Sure enough, next round of bloodwork in April I went hypo. Heart rate is now between 50-70’s most days, I sleep much better, I have an occasional day of feeling yucky, but figure its just the Graves. Endo said I will always have Graves Disease, hmmm, still don’t quite get that since my thyroid died off. I was down to a 119 lbs. (and quite happy about that), but I gained 15 lbs. back eating mostly salad and yogurt, anticipating the hypo weight gain and trying to stay ahead of the game, hah!!! My hair thinned a little and I walked into my endos office and said, “you need to fix this, TODAY!!!!! He told me to take Biotin Forte 5 mg (behind the counter at the pharmacy), my once chia pet thick hair grew back right away and I also bought Biotin shampoo, did the trick!! As far as the weight gain, he looked at me and said, “you don’t realize how sick you were”. Okay, I get that, but I better not gain another ounce, he upped my Synthroid to 100 mg, I don’t feel like I put on any more wait, but he better have a Plan B in the wings, because he will really see a crazy lady if I gain any more weight!!!!
Here is too better days ahead for you, they are coming soon.
Karen
Hi mollypop, even though I am a lot older than you (57), I experienced all the same things you are experiencing. How is your heart rate? I ask because mine was 180 bpm and I did not even feel it! When I first walked into my wonderful endos office, he hospitalized me the same day and for two weeks. I had all the same symptoms extreme weight loss (30 lbs.), dragged myself to work everyday, slept the minute I got home, but had horrible insomnia at night when I did go to bed, horrible anxiety. So please know you are not alone, this website has helped me with good advice and knowing that I was not alone with my fears and struggles. People on this site offer good help and advice, I read this forum a few times a day to just catch up on how everyone is doing. I knew nothing about Graves Disease and Hyperthyroidism. From my experience, I had RAI on 12/14/12 and went hypo in April of 2013. It took a few months of still feeling lousy and getting all that thyroid hormone out of my system. I can say those symptoms have dissipated. My heart rate is between 50-70 now, anxiety has lessened (still have issues with that), put 15 lbs back on but gained the muscle back. Having the RAI is a choice my endo and I discussed, I did not do the anti-thyroid drugs because my endo said my liver enzymes were slightly elevated and he did not want to risk it and I trusted in him to help me make the right decision. What are your labs? I have have labs once a month, initially everything was out of whack but they are starting to get better. Does your endo check TSH, Free T3 and Free T4? Hope this helps and you start to get the help you need. Everyone posting before me offers great advice!!! Try not to exercise and let yourself and body rest, you don’t need the extra strain right now (just a suggestion by me). One of the hardest things, and I know other people will agree is that when you start to feel and look better, people think your okay but do not realize the struggles we face every day. Keep in touch so we all can help in our own little way!!!
Karen
in reply to: Just diagnosed yesterday – Graves and Hashimoto #1180021Hi Arden, I was and still drive myself crazy, I bought a bunch of books on Graves Disease, cookbooks for best foods, etc., I had to take a step back and stop for awhile because I got to the point I didn’t know what was good or not. I just started watching what I ate, even though I was hyperthyroid at the time I watched what I ate because I knew at some point I would go hypothyroid. I gave up caffeine, chocolate, because of my a-fib, I try to eat healthy.
Hopefully your endo will help you get on your way.
Karen
in reply to: Just diagnosed yesterday – Graves and Hashimoto #1180019Hi Arden, Welcome! I too was diagnosed with Graves Disease on 12/6/12 and had RAI on 12/14/12. I also suffered with all the same symptoms you have, and was diagnosed with a-fib to add insult to injury. I have a great endo who I really like and he feels my a-fib is thyroid driven. My heart rate has returned to normal between 50-70 which is way better than 180 bpm. This is a great forum and good people who will offer tremendous support. We are here for you!
Karen
in reply to: Hyperthyroid Symptom Question #1179894Sue, I agree with you on the food issues, I try to be really careful about what I eat. I do notice if I have a day of not eating well, I do not feel well and I am also working not to gain any weight, the only good think about the Graves Disease/Hyperthyroidism was a 30 lb. weight loss, I put 15 lbs back on and I would like to lose 10 of those pounds. I said to my endo I eat a salad and yogurt everyday for lunch at work and try to eat a healthy dinner, what the heck. I try to stay away from bread and red meat, and eat alot of vegtables and chicken and fish. Its hard when you work all day because I am exhausted when I get home and don’t feel like cooking anyway but have a husband and son who are usually starving. My endo feels that it is related to my heart rate going to low, I feel better when it is in the 60’s, anything lower I get the dizzy feeling. All of this is a job in and of itself, so frustrating! My anxiety jumps like crazy when I feel off and I think something is happening.
in reply to: Hyperthyroid Symptom Question #1179891Sue, my heart rate was 180 bpm when I was in the hospital for two weeks and had RAI, I was sent home by the cardiologist on 40 mg. of digoxcin and 600 mg of Lopressor, the Lopressor was 200 mg 3x a day, well as my thyroid started dying off the cardiologist wasn’t seeing me for 3 months. (I have since switched cardiologists), he never said anything about it going too low!!!! My RAI was 12/14/12 and through most of January I hovered between 100-120 with my heart rate but then it started to drop due to thyroid hormone dying off. Cardiologist never took me off those high of meds and I didn’t know, duh, landed up in the hospital. My endo (who I have stated before is wonderful) was at the hospital in an hour and admitted me under him. He took me off everything and released me after a week with only taking Metropolol if my heart rate went above 70, which might be once a week if that.
Karen
in reply to: Hyperthyroid Symptom Question #1179889Sue, yes the anxiety does rise when I get those bouts of dizziness. I have xanax but try not to use it and only take a half if I have one of those spells, it at least keeps the fear at bay. I hate when I have those episodes, a month after my RAI, when my thyroid levels were coming down I passed out, thank god I was home and my husband was here, my heart rate was in the 30s, and I ended up in the hospital for another week because my heart rate dropped too low
Karen
in reply to: Just got diagnosed:( #1179869@Moonbeam and ChristinaDe, great advice by Christina, I keep a journal and write down all my questions for my endo and then after my visit I write down everything we talked about and take a copy of all my lab work and keep in the back of my journal so I can check where I am it. You have to be your own advocate, some great advice by everyone on this site, sometimes its humor, sometimes its just knowing your not alone.
Karen
@Christina, veryyyyyy gradual, took 6 months of gradual.
in reply to: Just got diagnosed:( #1179866Hi Moonbeam, I could not have said it any better than everyone already has. Welcome to your new “graves family”, it sucks for all of us, but we help each other and that in and of itself is comforting!
Karen
in reply to: Surgery (non-thyroid) update #1179929Bill, happy to hear all went well!!!!!
Karen
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