[StacyQ]

in reply to: Muscle cramps – Ouch #1171219

I felt your pain before I had the RAI treatment. After I got that done, I haven’t had those kind of pains again. But before the treatment, WOW, it would wake me up in the middle of the night, i wouldn’t want to get out of bed..it was horrible. Hope you can find something to relieve this pain! Good luck!

~Stacy

[StacyQ]

in reply to: Any input on RAI appreciated please / having it in a few days #1171266

Hi Beach…I have decided to copy/paste a post of mine from 2009 about my battle with Graves. It’s been almost 3 years since I had it done and I wouldn’t trade it for the world!

Hello Everyone!

This site is wonderful! I’ve been lurking for a while. Reading stories and decided to join and share my story. In a nutshell, I was diagnosed with Graves Disease with a nodule/goiter (thru the uptake and scan) on my thyroid about 2 ½ years ago. When I was diagnosed, they told me that I would need a needle biopsy on the nodule to see if it was cancer or not. Hmmm….needle? Ummm..biopsy? Wow..how did this all happen!! Since I absolutely HATE needles, just hearing NEEDLE alone was enough to make me want to crawl under a rock and die! After I went home and cried, I decided to read up on thyroid cancer and Graves disease and educate myself. I went for the biopsy which was one of the worst experiences I’ve ever had, I’m not gonna lie. Any of you that have had it done, I think, can identify with the uncomfortableness (is that a word?) of this procedure. Thank God the nodule was BENIGN! After that was my next step…deciding to take meds or do the RAI treatment. Honestly, the RAI treatment kind of scared me in the beginning so my endocrinologist said that he was going to put me on methimazole until I decide what I want to do.

Two years later…I decided on the RAI treatment. Basically, after they took me off the meds, I did not go into remission, in fact, I was a mess again! I thought, this is it, I’m getting the RAI done and my endo also said that the medicine was hurting me more than it is helping, which I agreed upon cause I was always sick (low immune system) and never, really felt RIGHT since I’d been on the pills. Now, I told you all that, to tell you this, the RAI treatment was the best thing I’ve ever done in my life! I had it done July 17th of this year and became EXTREMELY HYPO by mid Sept or so. I was having cold sweats like every half an hour, my blood pressure was extremely low, I was fatigued, extremely tired and sluggish. I told my husband that I felt like the walking dead! Hahahahaha! I went to endocrinologist and she immediately put me on Synthroid. Apparently, my TSH levels were 84! I asked her where my numbers SHOULD be…she said between 1.1 and 4.8! Holy cow! No wonder why I feel like I’m ready to go into a coma! Hahahaha! Even though all of these things happened to me, all I could think of is, “I would rather have this happen to me than having heart palpatations everyday…ALL DAY!”

There’s a little run down on my battle with Graves. Right now as we type, I’m on my 3rd week of Synthroid and I feel like I’m getting better everyday. Granted, I’m still uncomfortable and not normal, but then, who REALLY IS normal? Hahahaha!

Nice to meet everyone! (hmm..that was a pretty long nutshell, wasn’t it?) hahahaha!
~Stacy

[StacyQ]

in reply to: Breathing not sufficient or deep enough #1061590

I’ve had that problem too with not being able to have a full, deep, satisfying breath sometimes. Just recently I had it happened to me along with indigestion so I took a Tums and both the breathing prob and the indigestion went away. I’m not saying that the Tums cured the deep breath prob but it worked and when i have the deep breath problem, i use Tums. Sometimes it works, sometimes not!

I used to be on meteprolol for my blood pressure but since i’ve been on synthroid for my thyriod they changed my blood pressure meds to Verapamil and I LOVE it and works better with my body now.

Good luck!
~Stacy

[StacyQ]

in reply to: could graves have gone unnoticed? #1061342

This is just from my experience and what happened to me, but, i feel like i’ve had Graves ever since I was a teenager (i’m 37 now) and was never diagnosed when I was younger. I had anxiety, sweats, heart palps, shakiness, etc, on and off since my teenages years. It was so bad one time that my mother took me to the dr for bloodwork and NOTHING. I was diagnosed in 2007 and got the RAI treatment in 2009 after horrible ups and downs with methimazole! Ugh. Anyways, I believe Graves CAN go unnoticed definitely. I believe it because it happened to me!

Good luck to you!
~Stacy

[StacyQ]

in reply to: My story, issues and questions. #1062781

Batorian,

After I had the RAI treatment I TOTALLY lost my taste for beer. I don’t know why, but it happened. I changed my beverage of choice to vodka and lemonade or wine. It was probably a good year before I drank a beer and it didn’t make me sick. It was really weird.

As for the "other" problem, my suggestion is to maybe get an estrogen test done. In a nutshell, I had NO sex drive for a while and understand the frustration. I was diagnosed with premature ovarian failure which was a huge part of the problem. I posted a thread on my problem under Graves and the ovaries if you’re interested ” title=”Wink” />

Take care and welcome to the board!
~Stacy

[StacyQ]

in reply to: DOWN #1064078

I agree with what everyone has said, especially a good cry and comedies!!! George Carlin is great to watch too (if you like foul mouthed comedians who tell it like it is!). He’s saved me from the crazy house on more than one occasion!

Good luck to you! Things WILL get better! ” title=”Very Happy” />

~Stacy

[StacyQ]

in reply to: Endo dropped me :( #1064565

I would get a new Endo, asap! This endo is a complete idiot! This is your health we’re talking about and only YOU know how you feel! Drop him..

~Stacy

[StacyQ]

in reply to: Hyper again? #1064947

Karen you are definitely not crazy! In fact, that’s what’s happening to me as we speak! It was a year on Sat since I had the RAI done and was feeling awesome on the synthroid, now, i’m getting hyper symptoms. Can’t sleep, sweating, heart palps, etc. I called Endo today and they faxed me a script to get blood checked. I guarantee that the blood is off. You should definitely contact your Endo and get your levels checked.

Good luck! ” title=”Very Happy” />

~Stacy

[StacyQ]

in reply to: Effect on your Menstrual Cycle – Sorry guys…. #1065140

Sandy,

I am 36 years old and had the same problem as you. Just a little background on me..Diagnosed with Graves in June 2007, chose to do methimazole for 2 years then caved into the RAI (best thing i ever did. Do not regret it and wish i did it sooner!) Anyways, while i was on methimazole my period would skip once and a while but when i got the RAI done I quit getting periods…PERIOD! I was sure that i was going thru early menopause because i was getting the sweats, etc…everything that goes along with menopause. After 7 months without a period, i went to the gyno to find out what was going on. I didn’t go sooner because my endo said that since my Synthroid wasn’t right yet, that maybe it was affecting my cycle. In a nutshell, the gyno wound up putting me on these pills for 10 days that supposed to give you your period…NOTHING! Then she sent me for an ultrasound…NOTHING WRONG. Finally, she put me on birth control pills. I FINALLY GOT MY PERIOD! And that was about 5 months ago and i’ve been regular since then. The problem that i’m having now is that my blood pressure has been very high (i have hypertension too) plus i’m nauseous in the mornings. I would like to give my body a break too so i’m gonna call gyno to see if i can go a month without the birth control to see if my body will go back to normal. I really don’t want to be on these pills. They did the job and really hope my body gets back to normal so i don’t have to take them anymore.

Good luck to you! You’re not the only one that has/had a nonexistent period!

Have a great day!
Stacy

[StacyQ]

in reply to: I JUST DON’T UNDERSTAND #1066826

Mama,

It took me about 2 1/2 months before i went hypo. During that time, i felt my best!!!!! I was sooooooo hoping it would always stay that way…low and behold…hypo kicked in within ONE WEEK! The beginning of the week i was cleaning the house at 1am wide awake and by the end of the week i was in bed by 8pm with fatigue, sleepiness, etc. When i went to get my blood work done I had gone from an 8.1 to an 84! I felt like i was gonna go into a coma! Thank God i got on the synthroid when i did. Also, when i got the Synthroid she said it takes 6 weeks to start working! Lets just say, most of October 09 was a blur to me!

It will definitely get better Mama. From what you posted about the good and bad feelings…it could be the trigger of your hypo! Hope you feel better soon!! Take care and keep us posted!

~Stacy

[StacyQ]

in reply to: Help! Losing my hair!!! #1067411

Ughhhh…i’m experiencing the same thing with my hair! Clumps and clumps of hair come out of my head! And luckily i have thick, curly hair cause i’d have bald spots on my head. I’m on Synthroid .125 but was just reduced to .112 because of hyper symptoms that came back and blood work was off. Today was my first day on the new dosage…hope to start to feel better again and hope to be able to save most of my hair!

Have a great day all!

~Stacy

[StacyQ]

in reply to: Effects of RAI #1067701

Bobbi…i can relate to you.

I had been on methamazole for 2 years before i decided to do the RAI (July 2009). I had chronic sinus infections, sick alot, etc etc. I was so sick and tired of it and the heart palpatations on top of it!!! Lordy! The meds were keeping my numbers right but the side effects really sucked! ” title=”Neutral” /> Now that i’ve had it done, i’m fighting to get my thyroid back to normal with Synthroid. But as i mentioned before to people on this board, I would sooooooo rather have the fatigue, tiredness, weight gain, etc, than the heart palpatations, running on empty feeling, hyperness, etc. I know that everyone’s body is different, and people should make their own decisions on THEIR bodies. Please, DO NOT let an ENDO force you into something IF you feel that you’re not ready. In my situation, i tried with the meds for two years with no remission then said, forget this..give me the RAI!!!! LOL! It also bided me some time to research and make SURE this is what i wanted.

Good luck to you.

~Stacy

[StacyQ]

in reply to: Hi!! New Here #1067830

Susan,

Gotcha! Wow…you’ve been dealing with Graves for a long time!!! It’s always good to hear that people have actually gone into remission. Unfortunately, that wasn’t the case for me. I have a nodule/goiter on my thyroid that just wanted to run a marathon 24/7!!!!! hahahahaha! Now that i’ve gotten the RAI done, i don’t feel the nodule as much..seems like it may be shrinking!!! yay!!!! ” title=”Very Happy” />

I think the amount of time away from family depends on the dosage. Don’t quote me on that but the facility that administered my RAI said that I could go home in 3 days but to not hug/kiss,etc…with hubby for another day or two (I stayed at my father’s house that is vacant at the moment). They told me that since the treatment goes thru your system and you release it thru your urine mostly (..the rest goes thru saliva, sweat)…to not have a baby sit on your stomach, hip or hug them for the 3 days (including animals). Do some searches on the internet…you’ll find some useful information on RAI and isolation ” title=”Smile” />

Good luck to you! And keep us posted on your blood work!

~Stacy

[StacyQ]

in reply to: Hi!! New Here #1067827

Hi Lacie and Susan,

Wow! Yes, we could be twins! My endo has me on 125mcg, once a day of Synthroid. I have to go for blood too, second week in Nov.I’ve been feeling a lot better each day. What was your TSH level Lacie before they put you on the Synthroid? I think he gave me such a high dosage because of how HIGH my number was. I’m telling ya, I was comatosed! LOL! Also started the blood thinner along with my blood pressure meds. Blood pressure yesterday was 112/88. So that was good. Yeah, my weight kind of sucks and I wish I could get a period! LOL! Never thought I’d say that! I’m 2 ½ months late! Yes…that’s 2 ½ months, not weeks! I feel miserable! Anyone else have probs with their periods? (of course, I’m talking to the women!) hahahahaha!

Susan, may I ask how long you’ve been on anti thyroid meds? My endo said that he wouldn’t keep writing a prescription for methamazole because since it wasn’t helping me, the side effects will just hurt my body in the long run. I had been on the meds for 2 years and he said that he’d only write 3 more months for me if I needed time to decide. I had an endo before the one I have now that said the same thing. I had already decided by then and during my remission (the time before I made my appt for RAI), I thank God that I did the RAI. There is NO WAY that I could live without those meds and there is no way that I’m gonna take these anti thyroid meds for the rest of my life! Especially when my primary and endo said that if I get the RAI I may be able to have a reduction on my blood pressure meds or be able to get off of them completely! That was enough encouragement for me! I’d rather take a hormone pill than meds with possible side effects down the road! : ) Good luck to you in whatever you decide and keep us all updated! ” title=”Very Happy” />

I’ll update you guys when I get my blood done in November.

Have a good one!
~Stacy

[StacyQ]

in reply to: Hi!! New Here #1067824

Sorry it took me so long to respond Susan. I’ve been super busy and during this whole Synthroid stuff my primary dr. lowered dosage on my blood pressure meds because my blood pressure and pulse were extremely low, so, 4 days ago my blood pressure was 150/104!!!! whoaaaaa!! no wonder why i’m having headaches and sinus problems! Anyways, just got back from primary and i’m back on my regular dosage plus a blood thinner until my thyroid gets right! I’m still very sluggish, cold sweats are for the birds too!!!! But, as i mentioned before in my other post, would rather have this than heart palpatations!

To answer your question about weight…I’ve gained about 10lbs since I had my RAI. And it sucks. I’ve been on the Synthroid since Sept 24. My thyroid dr says that i won’t feel full effect of the Synthroid till i’ve been on the meds for 6 weeks or so. But when i got weighed today I was 2 lbs lighter than i was before i started on the Synthroid. Honestly, i hate that i’ve gained this weight, but, i can’t stress about it! I’ve got too many more important things I need to think about like getting my blood pressure right again and getting this thyroid to cooperate!!!! hahahaha! I started working out 4 times a week BEFORE i got my thyroid done because i KNEW that i was gonna gain weight, so, I suggest to do that before you get RAI. It made me feel better about the whole weight gain thing ” title=”Smile” /> I’ll definitely keep you updated on my ever progressing thyroid and HOPEFUL weight loss as soon as my thyroid behaves itself!!!! ” title=”Neutral” /> Susan, i recommend the RAI treatment whether you gain weight or not….weight can be controlled by exercise and eating right. Your overactive thyroid can kill you and as much as i know that i am overweight, I would rather have a ripple or two around my stomach than feel the way i used to feel before the treatment. Just my opinion from my experience ” title=”Very Happy” /> Good luck to you in whatever treatment you choose ” title=”Smile” />

Have a great day!
~Stacy

[Author]

Posts