[linzyyyy April 11, 2013 at 5:59 pm Post count: 21]

#1177794

Hi 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.

Lindsay

[linzyyyy April 11, 2013 at 5:59 pm Post count: 21]

#1177795

Hi 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.

Lindsay

[Momof5 April 11, 2013 at 6:43 pm Post count: 118]

#1177796

I want to add that I was very discouraged when I first began researching and didn’t find many “success” stories. In fact, it scared me a lot more. The thing is, I am amazed at how many people in real life I have now been in contact with or heard stories about who are doing amazingly well. I haven’t yet met someone who has successfully done ATD’s and gone into lasting remission, but I have talked to several who have had RAI and several (many more than I ever realized) who have had their thyroids removed via surgery (for cancer or GD) and have full wonderful lives. Those stories give me hope. I kid you not, I have probably heard at least 50 different stories.

I still haven’t decided on continuing the ATD’s or going for surgery (I’ve already decided RAI is out) and my endo is actually pushing me to WAIT until I am more stable to make a final decision. I’m thankful for that.

There is a part of me that says do the surgery and move on with life and there is a part of me that says “what if you are in that small percentage that gets remission?” What if…..

[mollypop43 June 21, 2013 at 1:11 am Post count: 7]

#1177797

Hey Everyone, sorry I am just now getting back to you all! But i figured i would update on whats new!
SOOOO… I decided to do the RAI. I had it done on May 7th, and today is June 21st,My birthday ironically :].
Anyyyways, Heres whats been going on.. I got my blood results back from my check up with my endo

TSH: 0.013 reference range for females- 0.400-4.00

T4 Free: 4.19 reference range for females- 0.84-1.51

T3 Free: 15.5 referance range for females- 2.3-4.2

So theyre all quite outta whack still, i understand that this takes a while to all get regulated. My symptoms have gotten even worse though I have been having HOT FLASHES like crazy haha!

The real reason I wanted to check in, is because about 2 weeks ago, I was in a MAJOR funk. I have always been a very happy go lucky person, always been a HUGE people person as well. I can honestly say, for about 5-6 days I was legitimately depressed. All i wanted to do was go home and sleep, that was the highlight of my days. It was awful, i had never experienced such a thing. I would ignore all of my friends text messages, or phone calls for absolutely no reason, just for the fact that talking to ANYONE was the last thing i wanted to do. I dont want anyone to read this and get all feaked out when i say this, but it was so bad Thoughts had ran through my head “if i died right now i would be ok with it” IM FINE NOW PEOPLE lol so dont freak!! It wasnt like i was plotting my death, but i had never felt so incredibly low!! What is with that

Now im NO WHERE NEAR how I was feeling that one week, but im still not 100 percent yet. Close, but i dont feel back to the old me completely. Only because I have been still dodging social outtings for no apparent reason randomly. Usually I am a complete social butterfly, and it almost has me worried in the back of my mind that I wont go back to how i was Im sure it has everything to do with how out of whack my thyroid is, but I was just wondering if anyone else has experienced something of this nature??

Anywho, thanks for reading

[karenz516 June 21, 2013 at 2:29 am Post count: 74]

#1177798

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

[brondack June 21, 2013 at 4:06 am Post count: 40]

#1177799

[quote=Kimberly When things are fluctuating, I need labs and office visits about every two months, all of which comes out of pocket, as my insurance company won’t cover anything Graves’-related.
[/quote]

Kimberly,

This just finally caught my eye… You are a facilitator(and a very good one) of the GDATF forum and your insurance won’t cover anything Graves’ related?

I’m sorry – but that has to be one of the strangest combinations I have heard about.

[msled June 21, 2013 at 9:43 am Post count: 28]

#1177800

Hi,
It sounds like 57 is a ‘magic’ number. I was ‘diagnosed’ with graves in 2002 and have only had two years of stability. I insisted on antibody tests this year and all tests including TSI are negative (not graves)… I went through radioactive iodine twice and now I know my dose is way too high (I need estrogen post menopause) but it blocks thyroid. Right now I am using it to block some of the hyper problems, anxiety burning mouth hair changes itchy skin and of course my eyes… I was hyper for so long in the beginning that my eyes were constantly swollen. One Dr. did not see lag but another one did ??? I have had orbit decompression done and three eyelid surgeries, All of the eye surgeries were not painful…just a lot of explaining when I was out and about. I started the reduction in dose a week ago so I have to always remember to count back three weeks and the dose I was taking then is impacting me now. I was on .1 synthroid two years ago but when estrogen was prescribed (and far too much) I became very hypothyroid….I wish I could sleep like that now!!
No one can describe how this feels if they have never gone through it. I am hoping that in two weeks I will be back to myself.
Does anyone else have the burning mouth problem, this cropped up last week. I went to the dentist and had my teeth cleaned but all of my teeth are red and on fire like my tongue.
Marg

[KimberlyOnline Facilitator June 21, 2013 at 5:06 pm Post count: 4294]

#1177801

@mollypop43 – Hopefully, you will get some additional responses here. This would definitely be good to report to your doc at your next visit, but glad to hear that you are doing better now!

@brondack – If you have a pre-existing condition like Graves’ and have to purchase an individual health insurance policy (as opposed to being included in a group health plan), your insurance options are limited. When I lost my group coverage, I had two major companies turn me down outright, and a third discouraged me from applying. I had to work with an insurance broker to find one that would take me at all – and that was with a rider that excludes any expenses related to Graves’ or any other thyroid issue. I will definitely be keeping an eye on how the insurance landscape will change once the ACA goes into full effect!

[mollypop43 August 19, 2013 at 12:13 am Post count: 7]

#1177802

Hey guys, just checking in again.
So the last time i wrote on here, was 6/21/13.. It is now 8/18/13. Man oh man, this radioactive roller coaster has not been kind to me emotionally. Overall, My body is feeling better. I have a lot more strength to get through my days, and I actually have gained a lot of muscle back. The emotional/ mental symptoms/side effects have been awful for me. Like i explained in my last post, I went through a period where i was quite anti- social, and had a large amount of anxiety. This has been very difficult for me to deal with. I went through another, much longer period of being withdrawn, and very high anxiety again very recently. This lasted 3 weeks. The first week was the worst, it was so bad that i really didnt know what to do with myself.
Luckily i came out of that funk, and i am slowly starting to come back out of my shell (phew!) Lets just say it was an extremely difficult task on a daily basis having to fake it all day long at work lol.

Last week, I went and got my blood work done again, and the endo called saying I am hypo and they are going to start me on synthroid 100mcg. I am on about day 4 or 5? ive gained almost 16 pounds back from my skinniest point i was at. Now im at a healthy 138ish. Its so crazy when you start to gain muscle back, it was like the best feeling! I could actually lift things, and move things around without help! I used to just LOOK at an object and be like “yeahhh I cant get that on my own” lol people would be like “youre kidding right?” so the muscle gain has been huge! Total positive.

Also, Back when i was hyper I hadnt had my period in at least 7 months.. now its back, and i can actually get some cleavage goin on haha which i know is from gaining some weight, but I think also it has to do with my menstruation returning.

Before I had my blood work done, I noticed I was super cold all the time which i have read is a symptom of hypothyroidism. Ive also been super constipated too (tmi sorry) Im noticing how fast my weight can change too, i used to be able to drop up to 3 lbs literally over night if i had a normal sized lunch and just skipped dinner or something. So basically, Im learning to change my eating habits (so challenging)

My question is; does anyone know how long it takes to normalize everything once on synthroid? Im just soo excited to feel normal again there was a point where i felt awesome. I could read some sort of article only one time super quickly and retain all the information! I felt so on top of everything, I wasnt losing things everywhere i went, and just living more responsibly i guess. Then that all kind of faded within a couple days.

Any feed back would be awesome thank you!

[mollypop43 August 19, 2013 at 12:28 am Post count: 7]

#1177803

linzyyyy wrote:

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!
Lindsay

Hey Lindsay!
Just wanted you to know, that i am very thankful for your post! (I just figured out how to reply to a specific post) lol It really sounds like i can relate to everything you have had to say! i dont know if you read my most recent post, but i ended up doing RAI and after about 3 and a half months i am hypo! My body feels so much better still working on the emotional roller coaster lol but it is most certainly a work in progress!!
Thanks again for your insight!
molly

[KimberlyOnline Facilitator August 19, 2013 at 12:40 pm Post count: 4294]

#1177804

Hello and thanks for the update. So glad that you are feeling stronger these days!

Hopefully, others who have had RAI will jump in here with their experiences. Now that you are hypo, your doc made his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you should have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. Some patients are fortunate and dial into the correct dose fairly quickly, but it could potentially take several iterations before you find the exact dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again. Take care!

[mollypop43 August 19, 2013 at 8:04 pm Post count: 7]

#1177805

Kimberly wrote:

Hello and thanks for the update. So glad that you are feeling stronger these days!

Hopefully, others who have had RAI will jump in here with their experiences. Now that you are hypo, your doc made his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you should have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. Some patients are fortunate and dial into the correct dose fairly quickly, but it could potentially take several iterations before you find the exact dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again. Take care!

Thank you Kimberly for your response! Things seem to be looking up! Overall, Im super happy with my choice of finally following through with RAI. Having my tremors gone is amazing too Makes all the difference when im choppin someones hair off haha! Cant wait until im all normal again so far, being hypo is a breeze compared to being all graved out lol

[meemeej September 3, 2013 at 12:02 am Post count: 13]

#1177806

hi im meemee and im new here i was resently diagnosed with g.d. 2 years leading up to my diagnoses i had no energy i lost muscle mass in my arms and legs (especially on the left side) im so tired but i cant sleep more than 2 or 3 hours at a time. i am 35 y/o as of today 9/2//13 and i have 2 girls ages 12 and 15.i recently ended a 13 yr relationship so now im a single mom . it seems like i cant catch my breath just walking up 5 steps my heart beats so fast it wakes me up from what ever little sleep i do get. my goiter is HUGE. i just started taking methimazole 20mg 1x day. propranolol 60mg 2x day.

Diagnosed- Graves disease 8/6/13
T3 free 2.30 – 4.20 pg/mL 8.40 H
Free T4 0.70 – 1.80 ng/dL 3.10

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