[naumanb]

#1059077

Hello all. My name is Bri, I am 22 years old and was recently diagnosed with Graves’ Disease the beginning of April. I just want to know from others who have gone through this that they can share their knowledge of the disease with me. I started back in April on 30mg of Methimazole and recently went back for my 6 week lab check. When I first was diagnosed my T4 was at 3.7 and now it’s at .3 (they say the standard range is beween .8 to 2.2) and they tested my T3 for the first time and it was at a 2.5 (standard range being 2.8-5.2) and my TSH was at first at <.015 and more recently went to 62.602 (standard range being .3-5). Naturally this worried me but they cut my Methimazole dosage to 5mg instead of the 30. The process of being diagnosed was tough, so many blood tests. It started with my inability to fall asleep at night and then stay asleep as well, I tried everything I could over the counter to help me sleep and nothing cut it and it got to the point that I was sleeping maybe an hour a night. Then I noticed my heart felt like it was racing when I would get up in the morning. I kept blowing it off until someone told me to just go get it checked out for my own peace of mind and if anything they could at least get me something to sleep at night. After countless doctor’s visits, my heart rate was over double what it should be at rest, and blood test after blood test they finally diagnosed me with hyperthyroidism and recommended an Endocrinologist for me to see to find out what exactly was causing this. I went in to see the Endocrinologist, who is amazing, and he didn’t take too long to diagnose me with Graves’. I was amazed at the symptoms I had been living with without even realizing it. I had a horrible tremor and i just figured it was anxiety. I was more anxious lately, a lot more irritable and on edge, I had horrible heat tolerance, my eyes were bulging and my eyelids moved slower, etc. So far the Endocrinologist I see has been great and keeping up on my lab visits! I just want advice from others with this diagnosis and wondering if you have experenced similar experiences. Also, have any of you had the eye bulging and does it go away with time or will it get worse. All he said was that if I smoked, which I don’t, that it would make it worse. I also worry about the potential of getting double vision and all that. I just have felt pretty depressed and anxious lately since my diagnosis and have had a lot of stress going on as well that doesn’t help. I do not really have anyone I can talk to about this so I really am just hoping to talk to some of you who know where I am coming from and have been diagnosed with Graves’. Anything would help, words of advice, your stories! I would really appreciate it!

[adenure]

#1171984

Hi Bri!

Just wanted to say hi & give you a big cyber- hug! Try to stay positive and strong. I’m actually still not 100% diagnosed with Graves… I had a baby 6 months ago and because of that, even though my bloodwork and scan could be indicative of Graves, only 1 doctor is willing to say that 100%. The others say that postpartum thyroiditis could be the problem- who knows… Kind of frustrating; I’m doing weekly bloodwork to track my numbers. I too took methimazole (for 7 weeks at 5 mg. a day), however, I got to be the 1% who had the meds. damaging my liver, so I had to stop taking it. I’ve been off it almost 3 weeks now; my thyroid levels are normal- so they’re doing my blood weekly to see if I start to slip towards hyper again or if I stay normal. I have a pre-op appointment with the surgeon tomorrow to discuss a thyroidectomy (which is scheduled for June 12th should the endo’s make a diagnosis)- I don’t know- it’s hard to be up in the air and not have a diagnosis and it stinks that I can’t take the methimazole (as it really was working well on my thyroid!), but I guess I have to wait and see what happens, although I need to be monitored fairly closely so I don’t get hyper or too far out of range if I should need surgery. Ah well…

It sounds like you’re handling your situation well; do your best to stay positive & it is great that you have a wonderful endo. I haven’t dealt with eye issues. Some minor twitching in my left eye (of course who knows if it’s Graves caused or not), but that’s it.

I hope you have a good rest of the week & enjoy the holiday weekend.

Alexis

[catstuart7]

#1171985

Hugs Bri and welcome. It’s a scary rollercoaster of a ride isn’t it? I was diagnosed a couple months ago. I had a very similar onsest of symptoms like you did. The tremor was the scariest because I’d look it up and see it linked with all these neurological disorders like MS. Are you able to sleep now that your thyroid levels are down? I’m still in the process of getting mine down and deep sleep is hard to come by – more like fitful light sleep. Anyway, hang in there at least you’ve got a diagnosis now and the biggest risks are behind you.

[Robboford]

#1171986

Hi Bri,
Stay strong. The members of this Forum are wonderful. Although I have only just registered, I have been a regular follower since being diagnosed with Graves last September. I will share my experience over the next couple of days, but all I can say is that you will have bad days and you are not alone there. I experienced my first really bad day about 3 weeks ago, where I felt like I could kill someone just for annoying me and I have never, ever been a person who felt sorry for myself or had dark thoughts etc. Having not been aware of the full impact that Graves can have, I had nowhere to turn and really thought I was going insane. After reading through other suffererers experiences on this Board, I was reassured (and relieved) to discover I was in fact normal. My symptons and complications are close to yours so I look forward to sharing our stories. I give thanks every day that “I have 2 arms and 2 legs” and have carried that thought with me throughout my life, so I really can’t complain, this is one of life’s curved balls that has been thrown to me and I will rise above it and come out the other side. I am currently on 22 tablets daily and am looking forward to my levels stabilising so I can go ahead with Thyroid removal. I am currently being monitored every 4 weeks by my Endo as my last Blood Tests showed my Liver was not happy with all the meds, so fingers crossed that has not changed too much and I can continue my dosage to get me closer to my op. (Even though my Liver was not happy, after discussion with my Endo my Neomercazole 5mg was increased to 4 a day (up from 2 a day) 2 weeks ago, so I am anxiously waiting my next results). (Sorry different meds name/s here in Australia). So, Blood Test tomorrow, Endo appointment Tuesday week and it is onwards and upwards from there. To all who have given me hope, laughter and inspiration through this Forum – Hugs, Kisses and Thank you – it means the world to me. Till our next contact, hang in there.
Debbie
Sydney, Australia

[Bobbi]

#1171987

Hi, Bri, and Debbie, and welcome to our board.

Bri — you asked about the eyes bulging. LOTS of us get a kind of wide-eyed stare with hyperthyroidism. It makes us think that our eyes are actually protruding, when in fact it is only our upper eye lids that have pulled tight in response to too much thyroid hormone. If that is what is going on with you, you might see some extra “white” part of the eye, above the colored part. Typically, if our eyes are actually protruding, we see the white all around the colored part. This “upper lid retraction” often (although not always) goes away once we regain controlled normal levels of hormone.

Your eyes might be extra dry, however, as a result of being exposed to more air than they are used to. If your eyes feel gritty, or dry, it is important to supplement your tears with products called “natural tears.” They come in various brands, and there can be a bit of trial and error before you find one that you prefer. They come in daytime and night time formulae. The night time product has the consistency of petroleum jelly. And, our opthamologists prefer that we use the artificial tears that come without preservatives in single dose packages. Preservatives apparently can irritate when used as frequently as many of us have to use the product. These drops are NOT the “get the red out” type of drops, nor are they they drops that are advertised for allergies. If you have questions, ask someone at the pharmacy to direct you to the proper brands and types.

[naumanb]

#1171988

Thank you all so much for your stories and kind words. I am trying my best to stay positive but sometimes I do let it get the best of me! I look forward to keeping in touch with all of you and continuing on hearing your stories as well! I find it much easier to talk about all this with people who are going through the similar situation! It is easier to understand what one another is going through and I feel I do not have the greatest support system at home. Thank you all again! Hugs to all of you!

[naumanb]

#1171989

Alexis, I hope things go well for you and you can get an actual diagnosis and start the process of treatment! Please keep me informed on how it all goes for you!

Catstuart7 Originally I was prescribed Trazadone to help me relax enough to sleep as well as atenolol to help slow my heart rate back to normal as they tried to diagnose me. I am off both now and was only using the Trazadone as needed but now I sleep too much, mainly because the Methimazole caused me to go from being hyper to extremely hypo, which is why they adjusted my Methimazole dosage. I hope it works and I regain some energy soon! I wish you the best of luck in your battle with Graves’ and feel free to keep in touch!

Debbie, I have had very similar feelings to those of wanting to kill someone just for annoying me, and I am far from a violent person and it is a bit bothersome. i wonder if there is anything that can be prescribed to help with this. I know I plan to go see my regular care doctor soon about my severe anxiety and depression lately and to see what I can possibly do to help with this. I wish you the best of luck in your battle with Graves’ as well and hope to keep in touch with you!

Bobbi, Thank you! i have not had an issue with my eyes being dry or gritty yet but I will definitely keep that in mind incase it does end up occuring!

Thank you all so so much again! I really appreciate the quick responses! I hope you all have a wonderful day!

[Darcy43]

#1171990

Hi Bri, sorry you have to be welcomed into this world, but it is really a supportive group.

Do your best to take your meds as prescribed, get as much rest as you can and try really hard not to sweat the small stuff.

It will get better, but it gets worst first.

Hugs.

[naumanb]

#1171991

Thanks so much! That is why I joined this forum, everyone seemed to be so helpful and supportive from what I was reading!

[snelsen]

#1171992

bri, this forum ROCKS!
YOU HAVE A LOT OF FRIENDS HERE.
Shirley

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