[Krisann79]

#1017913

Hi everyone,
I’ve been lurking here for awhile and have finally decided to come out to tell my story and also in hopes for some light at the the end of the tunnel. I was diagnosed with Graves 7 years ago. I was lucky for a very long time. My hyperthyroid readings were so minimal and borderline that most of the time I didn’t even need medicine. Then I had our baby. It became and extreme case and by the time my daughter was 1 I was having serious health issues from it. 3/16 I did RAI. I was given 20 millicuries of it to be exact. For just over 5 weeks I actually felt FANTASTIC! Then everything around me crashed.

I’m not sure why it happened this way but 4/29 the day started off with my friend bringing me the biggest Starbucks sized coffee. I knew it was alot to take on but never thought I’d end up here….. Long story short my heart rate skyrocketed, I felt nauseus, shakes, lightheaded, had to go to the bathroom, dizzy. Basically by body completely freaked out. I went to the ER because this continued for several hours and wasn’t getting better. I felt kind of silly because I knew the coffee had something to do with it but I had to go because it got to the point where my heart rate just kept climbing and I knew I just had the RAI so my body might be "sensitive". Once I got to the ER and several hours later when they finally got to me (of course) my heart rate readings were fine but they found I had gone hypo and that (here’s the kicker) I was pregnant eventhough we were using protection and to make things worse they were pretty sure it was ectopic. Well after a gazillion bloodtests & sonograms later things didn’t work out with the pregnancy. Basically ever since then I’ve never quite been normal. By this I mean my thyroid hormones are all over the place. After going hypo the Dr kept me on my 75 mcg Levothyroxine because he knew it’d build up in my system over time. And it did! Next I started having hypo and hyper symptoms eventhough my next bloodtest came back in the normal range but on the low side of normal. Now last week (3rd bloodtest) I tested just a little hyper. He’s lowering my dose for now because he’s trying to treat my symptoms. I’m now only on 50 mg of Levothyroxine. I can’t wait to feel better. I’ve literally had at least 3 symtoms EVERY SINGLE DAY since I went to the ER on 4/29 and I’m exhausted! Originally hypo and for the first time in my life I flew into depression and had headaches every day. Now I’m hyper and even while in range I’ve had racing heart, heart beating too hard at times, tingling in my hands and legs almost daily off and on, muscle weakness, I’m completely breaking out on my face, hair falling out and to put the icing on the cake I’ve recently starting having troubles breathing since I went hyper. I’m pretty sure I have anxiety for the first time as well. It’s got to be somewhere in the mix. I keep hearing other people say that their experience went so smooth after RAI and I really feel alone. Is there anyone out there that has felt this way? I can’t figure out why I’m still having symptoms even when I am in range (at times). I’m just so sick and tired of being sick and tired! I need to see the light at the end of the tunnel because this has been going on far too long and it’s worse than before I had RAI. ” title=”Sad” /> Sorry that this was so long of a post.

[snelsen]

#1061606

Just a quick not tonight, my eyes are too tired to write. Glad you lurked, and delighted you have decided to "join up.’ I really do not know what I would have done without this board. Go to bed knowing that you have a lot of new friends, great facilitators, and that you will "smooth out." You have had SO MUCH EXTRA stuff on your plate, with pregnancy, ectopic, and much more. I can SO RELATE to being sick of being sick. Me too. Graves is ok now, i feel good but labs may always be whacky. TED is my issue, which is why I have to go to bed right now! Several of the facilitators have had RAI, you’ll be hearing from them, plus many others!
The search engine is great, too. I used it a lot in the beginning.
Shirley

[LaurelM]

#1061607

Hi,

That is a lot of stuff to deal with all at once. Your body has really taken a hit. You have had back to back stresses. Don’t forget that even though the pregnancy was eptopic, your body still treated it as pregnancy and now as post-partum and you have all those hormone shifts in addition to the shifting thyroid hormones to deal with. Double whammy. Hopefully you can get some extra help right now with your little one or shopping or the house or whatever else is on your plate. You will eventually recover. It will feel like it takes a long time but it will happen. In the meantime, be sure to keep the lines of communication open with your Dr. Make sure s/he knows about all your symptoms as they may be able to help you mangage some of them. I really hope you are feeling better soon!

Laurel

[Kimberly]

#1061608

Hello – If you do a search for RAI, you will find posts from some members who had a smooth time…and others who took a longer period of time to find the “sweet spot” of replacement hormone that would keep them feeling well.

The important thing right now is to stay the course as you work towards finding your own “sweet spot”. In the meantime, have you talked to your doc about a beta blocker? That at least might give you some relief from the racing heart. And if your symptoms become worrisome again, don’t be afraid to go back to the ER – better safe than sorry!

Yours is the first story I’ve heard with a cup of coffee setting off such a terrible chain reaction…but I *do* know that if I drink regular coffee, I can count on several hours of the jitters. (I’m on ATDs right now). I’ll at least go half decaf if the regular flavors just look too good to pass up!

[Krisann79]

#1061609

Yeah the coffee thing is weird. All I can think of is that the coffee had that effect because I was pregnant at the time. Or maybe it set off a panic attack? Not sure but it was my first experience like that. The only thing that baffles me now is that things are still happening. I did go to see my GP yesterday for what feels like thyroid induced anxiety. My body has been through alot with my hormones being everywhere between RAI then hypo, pregnancy lost then recently going hyper all in a few months. So he put me on an anti anxiety med for now. It’s helped some but I’m still having trouble breathing. It’s like I can’t get a satisfactory breath unless I’m laying down doing nothing. Very frustrating because this has been going on for 2 weeks now. Grrrrrrrrrrrr!

So basically the meds are reducing my anxiety about the breathing problem but not fixing it.

[oscar]

#1061610

Krisann, many people might have found their "sweet spot", but I for one haven’t. My thyroid has not been ablated or surgically removed and the TFT’s are normal. Yet, I continue to have all these unbelievably strange symptoms that range from the emotional to the purely physical. It’s time for People to come out and say what they really feel from this disease.

[Author]

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