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This has happened to me before. Both times after waking up from an accidental nap. First time was before Graves diagnosis, I was so scared I had to call my husband to come home bc I felt too weak and dizzy to bring the baby downstairs! Chalked it up as an anxiety attack. Happened again last week, this time I just “let it ride” and pushed through. I just kept telling myself it was bc of my current state of hyperthyroidism. I have had more minor versions of this scenario happen all the time, but those were the two biggest.
Sorry you are going through this. (Sorry we’re all going through this!)
I’m going to start asking to have FT3 tested when I get my labs done. My T4 has been “in range” for a long time but I’ve still not felt great. I actually felt pretty awesome when I was hypo. That lazy tired feeling and a pulse of 58 was like a dream come true compared to always feeling like a jittery, anxiety-ridden spaz. Maybe my FT4 sweet spot is in the low range? Oh well.
karenz – how are you feeling? while i appreciate skipping the super hypo state and only gaining about 5-7lbs, i would rather have a little extra weight and not be hyper. I. hate. feeling. hyper.
I always do my best to think positively, be easy on myself and tell myself that considering the circumstances, I actually have it pretty good! I tell myself that eventually I will feel better if I’m patient, but I’m so frustrated right now. I just feel like I’m *so* close and I want to be there. I’ve had a few random weeks of feeling awesome and I think to myself “this is it! I’ve made it!” and then I just return to feeling crappy again. It’s discouraging.
Anyway sorry for my negative rant. I know you guys don’t even need to hear that crap.
I’m thankful for this board.
Hi! Don’t worry too much yet, my sister just tested positive for ANA and found out she does NOT have lupus. Chances are you won’t either! Hang in there, good luck with the cytomel
LindsayHaha vanillasky!!! “next time I go hyper, it’s gonna go get blown up or removed.” Made me laugh
Hi! Yes I think your symptoms can lag, and also overlap with hypo/hyper. I was on Propanolol for a few weeks following RAI and coming off the beta blocker, I would still get some weird jumps in heart rate and palps. I even had some 90s pulse days and palps when I was in the hypO range. Glad your anxiety is getting better!
LindsayHi
I guess I just wanted to add that I was also really really nervous about going hypo, but now I’ve experienced a TSH of .005 (maybe lower) and a TSH of 18 (maybe higher) and being hypo was a total dream compared to being hyper (in my personal experience.) I’d rather have an extra 5lbs and feel more tired than normal than feel like I’m going to have a heart attack at any second. LindsayHi
I guess I just wanted to add that I was also really really nervous about going hypo, but now I’ve experienced a TSH of .005 (maybe lower) and a TSH of 18 (maybe higher) and being hypo was a total dream compared to being hyper (in my personal experience.) I’d rather have an extra 5lbs and feel more tired than normal than feel like I’m going to have a heart attack at any second. LindsayHi! I know a lot of people on here seem to be scared about RAI but I wanted to let you know I had mine in November, I went hypo in 8 weeks, I’m on Synthroid now and feeling SO much better! Good luck
Hi! I just wanted to say hello and that I understand everything you have written about on here and experienced them myself. Although I was just diagnosed in November, I can look back and see that I’ve had Graves’ for about 6 years. I also felt like I was just being lazy and couldn’t understand why I was so tired all the time. I would push myself but it didn’t help. I also just felt STUPID. Forgetful, and just couldn’t process thoughts like I used to. I was so smart and sharp. I thought that I had just been out of school too long and had been watching too much TV or something…
I’m a stay at home mom now but I used to be a hair stylist too! I used to work for the Rusk Design Team. I completely understand the grueling 10 hours of no sitting or eating. All of that PLUS Graves’ sounds awful.
Anyway just wanted to say hi and let you know you’re not lazy or crazy or dumb. And I know you said you don’t want RAI but I did it, went hypo in 8 weeks, now I’m on Snythroid and feeling so much better! It’s been a journey, and I’m still not 100% “normal” yet (still figuring out the right synthroid dose, it’s only been like… 8 weeks) but oh my gosh, what a difference!!! My favorite part is that I can *think* again. And sleep. And exercise!
Good luck and I hope you start feeling better soon!
LindsaySometimes people have increased hyper symptoms following RAI, as the thyroid gland dies, it releases all of its stored hormone out into the body at once. People call it a “thyroid dump.” The nuclear medicine doc warned me about it briefly, but he was sort of nonchalant about it, so I don’t think I was prepared for what was to come… at all. I had like a Graves’ EXPLOSION three days after RAI, whereas before that, my symptoms were fairly mild. I had to start taking beta blockers because my heart rate and blood pressure went way up. Those made me feel super depressed at first, plus all the extra hormones in my body made me feel terrible. Super fatigued, hot, night sweats, heart palpitations, etc. And just out of it! I couldn’t think correctly. I kept writing my maiden name on forms and stuff (I’ve been married for 5 years) and I would just forget EVERYTHING. I also lost like 9lbs in 3 days which freaked me out big time. The radioactive iodine has a half-life of about 8 days. On the 9th day, I noticed a considerable difference in how I was feeling – I just woke up feeling a lot better. Then slowly, over the past two months my heart rate and blood pressure went down, my Graves’ symptoms were getting less and less, and I felt better and better each day. I was taking 40mg of propanolol 2x/day and slowly lowered it as my heart rate would lower. Now I’m just about off of it – I have taken 5mg 2x/day for a few days and actually just realized I didn’t take mine this morning and I didn’t even notice! (I would DEFINITELY notice before, I thought my heart was going to beat out of my chest without it.) For about a week and a half I felt the best I’ve felt in YEARS (pretty positive I was euthyroid) then I slowly started getting fatigued again, and cold, and I could feel my digestion slowing down, too. So I knew my thyroid had died (at least mostly) and I was turning hypO.
I know there are plenty of options and one doctor said he would have definitely tried ATDs first, before RAI, but I’m a cut-to-the-chase kind of person and just wanted my thyroid GONE. It was kind of a no-brainer for me. In the thick of it I just thought about something I read on here once: Doctors gave RAI to the PRESIDENT OF THE UNITED STATES for Graves’. That proves to me that it’s top-notch treatment.
One thing an endo told me after the fact is that I could have taken ATDs to get at least close to euthyroid before RAI and that would have dampened the extreme effects of the thyroid dump and I wouldn’t have felt so bad… Just one thing to think about before you jump in!
Good luck
@geostyv thanks for the post! I loved your story
I hope you continue to feel better and better!I had a random new endo appt today (I scheduled it 2 months ago when I was feeling insane and dying like 4 days after RAI) and he drew FT4 so I should find out the results tomorrow! Endo was knowledgable but kind of a jerk and his office gave me the heebiejeebies, it felt like a cell! Like put a picture on the wall or something! He seemed concerned that I haven’t gone hypo yet like maybe the RAI wasn’t going to work but I’m like come on dude look at my blood pressure and pulse! (Nurse said my pulse was 64 today.. I feel like that’s lower than my normal resting rate ever was even before graves started, whenever that was.)
I’ve been sick with a bad cold/sinus infection type thing this week which has sucked the life of me (being sick plus taking care of a sick 7month old and a 3 year old is like… Impossible.) but the cold stuff has gone away mostly and today I’ve been feeling cold, irritable and like I’m going to start crying for NO reason (cuckoo!) and just like blah. I hope I’m there so I can just get through this final leg of Synthroid dosing and maybe I won’t have to think about Graves’ EVERY. DAY. anymore.
Can’t wait for that butterfly shaped confetti moment!!!
LindsayAlso, it seems every time I have a morning of super-puffy eyes, I remember that I had eaten something super salty the night before! (Usually Chinese food or popcorn) I just remembered that I had the “house” soup from the Japanese steakhouse down the street (like just broth, a few mushrooms and some green onions… that kind of thing.) which I asked my hubs to get for me since I was sick. Duh.
LindsayAlyson,
I am also extremely paranoid about getting TED, and I also have a sinus infection and cold, which is freaking me out! My eyes have been so watery and puffy. This morning I had to put a cold rag on them. Yesterday I used hemorrhoid cream haha! (Whatever it worked.) It’s probably just this creeping crud.A few weeks after RAI my eyes started to bother me (it was like I could feel them in my head, and they were dry and sensitive to light. Occasionally very puffy in the morning.) One thing that made me feel a little better – I made an appointment with an opthalmologist just as a baseline checkup so we can keep an “eye” on things. He said he didn’t see any signs of TED and that only a very small percentage get the worst of it. When I started feeling better post-RAI, my eyes started feeling better too.
LindsayThanks for the input everybody
I decided to go ahead and suck it up and just push through the bad without ATDs. It seems like my last labs must have been one final big thyroid dump. Since then, I’ve started feeling exponentially better. I have normal energy levels, my strength is starting to come back and my heart rate is in the low 70s from the upper 90s/100s a few weeks ago and palpitations have been almost nonexistent… even after lowering my dosage of my propanolol about a week ago. I don’t want to jinx anything, but this is exciting! It feels good to be alive! I have a doctors appt on Friday and I’m going to try to get labs done pretty often so I don’t end up going too hypo. Hopefully that whole “finding the sweet spot” of replacement hormone won’t be too much of a roller coaster.
Lindsay
