# Hate feeling so bad all the time



## skimordiegirl (Mar 10, 2011)

I have had graves for over 11 years and am on Methimazole. My labs are stable, though not too far from hyper, yet my antibodies are sky high. I feel like I am dying between having anxiety and all these weird feelings I get. Also I feel crazy, most of the time at night. It's getting hard to drive during the day because the roads look funny to me.... almost like I am driving down a hill even though I am on straight flat land. I don't feel like myself anymore and just feel like there is no way out. I have to get a biopsy done on my thyroid because of a nodule and growth and I am not looking forward to that. I just wish my thyroid would stop producing these hormones. I hate the way my life is! I don't feel like a good mother or wife because I feel awful most of the time.


----------



## slivola (Jun 27, 2012)

So sorry you're feeling so awful. Have you tried CoQ10 and L-Caratine? You can see my other thread with links about them. They are supposed to help with reducing the actual symptoms of graves in addition to boosting the immune system. Maybe they will help you feel better. I'm sure other more experienced posted who have lived with graves for years will post as well. I know some of them have had their thyroid removed and life has been better for them.
Elaine Moore's website has a lot of useful information as well. Link is in my other thread about CoQ10.
Hang in there!!!


----------



## adenure (May 7, 2012)

Hi,

My heart goes out to you. I was diagnosed with Graves after my 4th baby was born. I was put on methimazole (5 mg) for 7 weeks. It got my numbers normal, but it elevated my liver enzymes 8 times the normal amount so I was forced into the decision of RAI or surgery sooner than anticipated. I opted for a TT bc I wasn't comfortable with RAI. I had my surgery 8 weeks ago. I am very grateful that I did. I am on Synthroid now and am in the process of getting my dose right, but I feel way better than I did when hyper and even better (in a lot of ways) than when I did on methimazole. None of this is easy- be it methimazole or recovering from surgery and waiting for the Synthroid to work and be figured out; it's not easy at all. If you're able though, I would suggest thinking about having your thyroid removed or having RAI- whichever you are most comfortable with and your doctor supports. My endo recommended RAI, but supported me in my surgery choice.

You are NOT crazy, know that. I too, at the worst of the Graves before I started methimazole, felt like I was losing it. I had panic attacks, anxiety, 120 heart rate just walking down the hall, tremors, and was scared to take care of my own children- my own children who I have always stayed at home with and homeschooled for 4 years. All of a sudden, I would panic if I were at home by myself with them bc I would feel so "woozy" and weird bc of the Graves symptoms. I instructed my boys on how to dial 911, get a neighbor & contact my husband. Geez. I spent many days crying and thinking I would never be normal again. I didn't eat, my senses were so acute it was aggravating, I lost 13 lbs in a month. I actually had panic attacks in the shower and had my husband sit in the bathroom with me bc I was scared to shower by myself! And all of that was because of Graves Disease. I can tell you that since my surgery, ALL of the above are gone. My insomnia still hits me sometimes, but not nearly as bad as before. I feel a little off at times bc I'm still recuperating from surgery and the Synthroid isn't quite right yet (TSH is 6.35), but I'm not panicking, anxious or in tears. I shower on my own- hee hee- and am once again homeschooling my boys and taking care of them fairly confidently. I still don't feel 100%, so I'm not totally there, but am close! My heart rate is in the 60s again and I feel like I'm on the path to being me again.

You CAN get well again. For some, methimazole does the trick, but not for everyone. Consider RAI or surgery; it might be the way to wellness for you.

Alexis


----------



## webster2 (May 19, 2011)

Have you considered surgery or RAI?

I had forgotten about driving until reading your post. I made some dangerous mistakes there, and quit driving for awhile. Of all the symptoms, the mood swings were the most awful. I was a raving lunatic, it was scary. My poor husband bore the brunt of all that madness.

Night time was a tense time too. My heart would race, whole body would be covered in sweat, and no sleep. Graves is tough, mentally and physically.

I had surgery a little over a year ago, and I can't believe how great life is again. I never really thought it would happen. The endo feels I have had Graves for over 20 years. It does feel great to be calm and relaxed now.

I wish you the best. You are in a rough spot now.


----------



## skimordiegirl (Mar 10, 2011)

Wow, thank you all!

I have thought about TT, but have always been so scared that I will get worse. I have always thought that maybe I would get better on my own. My dr. is reducing my methimazole down to 2.5 and then 1/2 of that every other day, even though my antibodies are high. They thing my thyroid is going to stop producing the hormones soon, but why are my antibodies remaining high then? Does anyone know about that? Will I continue to produce high antibodies even if I go hypo? I am scared about RAI because I've had TED before, but went away with methimazole treatment. I just feel kind of stuck :hugs:


----------



## adenure (May 7, 2012)

Hi,

I don't have the source for this off hand, but I believe remission is more likely to happen if the antibodies are not high. TT won't make your Graves or hyper worse, in fact it will make it WAY better and will take away almost all your symptoms if not all of them. There is a recovery time from the surgery itself and you have to get the Synthroid dose right, but these things are much easier than living in a hyper state. The key to surgery is getting an excellent surgeon who does many thyroidectomies a year. They are out there, just takes time to find them. I think antibodies can go up and down, but I'm not sure exactly how it works. You can control it to an extent with diet, lifestyle (some say gluten free helps, de-stress your life as much as possible & take care of yourself). If you are able and can interview surgeons and you are stable enough hormone wise for surgery, I would consider it. You deserve to be well again.

Alexis


----------



## hyperinnyc (Apr 18, 2012)

ELEVEN YEARS??!! That scares me having had to feel awful for the last 1.5 years. Have you felt terrible the whole time or did at some point it become manageable? I know exactly how you feel. I feel like I am in a fun house or the twilight zone sometimes. I cannot see correctly, walk off balance and cannot think like a normal person. This disease is CRAZY, not us. I cannot imagine feeling this weird much longer. It seems like it's time for you to get a TT (I'm going to get one soon. Hopefully.) Everyone seems to feel a lot better afterwards.

Best of luck to you!


----------



## skimordiegirl (Mar 10, 2011)

hyperinnyc said:


> ELEVEN YEARS??!! That scares me having had to feel awful for the last 1.5 years. Have you felt terrible the whole time or did at some point it become manageable? I know exactly how you feel. I feel like I am in a fun house or the twilight zone sometimes. I cannot see correctly, walk off balance and cannot think like a normal person. This disease is CRAZY, not us. I cannot imagine feeling this weird much longer. It seems like it's time for you to get a TT (I'm going to get one soon. Hopefully.) Everyone seems to feel a lot better afterwards.
> 
> Best of luck to you!


Hi, I was doing fine symptom wise after they diagnosed me and put me on medicine, then in 2006 everything started going downhill. I have been unwell and felt like a lunatic since then. I understand the off balance feeling all too well. We went to the keys this past weekend and the 8 hour car ride made me feel like jello :hugs:


----------



## hyperinnyc (Apr 18, 2012)

Your post made me LOL! I'm sorry to laugh but I too feel like I'm nuts most of the time. I think "Am I acting weird? Can they tell I'm crazy? Is everyone looking at me?? Do I have pants on?"

So it is refreshing to know you too feel like a lunatic.


----------



## webster2 (May 19, 2011)

I can relate to the jello feeling. Last July (2011) before I had the surgery, we took our boat out for the day. It is not so hard sitting in a boat and enjoying the day. I was bed ridden for the next 3 days. It was not fun. Graves is a strange animal.

For the most part, I am symptom free, and TG for everyday that I am!

Best wishes to all of you!


----------



## skimordiegirl (Mar 10, 2011)

hyperinnyc said:


> Your post made me LOL! I'm sorry to laugh but I too feel like I'm nuts most of the time. I think "Am I acting weird? Can they tell I'm crazy? Is everyone looking at me?? Do I have pants on?"
> 
> So it is refreshing to know you too feel like a lunatic.


Haha, I understand!! I am pretty sure my husband thinks I am a nutter butter too. One day though... I am hoping that will all change and I can say "Seeeeeeee I am not so crazy!!!"

P.S. had to edit the post because I made no sense hahaha


----------



## skimordiegirl (Mar 10, 2011)

webster2 said:


> I can relate to the jello feeling. Last July (2011) before I had the surgery, we took our boat out for the day. It is not so hard sitting in a boat and enjoying the day. I was bed ridden for the next 3 days. It was not fun. Graves is a strange animal.
> 
> For the most part, I am symptom free, and TG for everyday that I am!
> 
> Best wishes to all of you!


Ahhh see I am so scared to get on a boat and go away from shore because of that happening. MY husband was upset with me that I wouldn't do that in the keys. I need to show him this site to validate my responses. I feel like an awful wife at times because I can't do all the things he wants to do.:sad0049:


----------



## webster2 (May 19, 2011)

skimordiegirl said:


> Ahhh see I am so scared to get on a boat and go away from shore because of that happening. MY husband was upset with me that I wouldn't do that in the keys. I need to show him this site to validate my responses. I feel like an awful wife at times because I can't do all the things he wants to do.:sad0049:


My husband has a post in the works on what it was like living with someone with Graves. It is brutally honest. He went through the mill with me.

What is your treatment plan?


----------



## skimordiegirl (Mar 10, 2011)

webster2 said:


> My husband has a post in the works on what it was like living with someone with Graves. It is brutally honest. He went through the mill with me.
> 
> What is your treatment plan?


 I can't wait to read it and show my husband.

My treatment plan.... well I have never thought about that. I keep thinking about the surgery.... but I am going to wait until after my biopsy. I am a little scared because I am in a bad way with a neurological condition, that may or may not get worse with going under the knife. So I am very scared about that, but feel like what if I could get better by going under.

I guess I really don't have too much of a plan really.


----------



## webster2 (May 19, 2011)

I will prod him along with his post. Your husband may find some similarities in it! Graves can take a nice normal person and turn them into a raving lunatic in an instant. I was really a wreck. It is a miracle that I still have a marriage and a job. I came really close to losing my job too.

I skipped the FNA. The endo suggested it twice and twice I refused. Graves can skew the results. I knew I wanted it out. I had had the surgery before so I knew that it was not a big deal. I just wanted to feel better, or at least in control of my emotions, not have my heart racing and be a sweaty incoherent mess all of the time.

My husband asked at the post op appointment if the mood swings would be gone. The ENT was a bit vague on that point but they have gone away.  We are very very happy about this! We were very close to divorce and will celebrate (yes, really) 35 years in October!

The endo feels I have had Graves for 20 years, since the first thyroid surgery. In the past I have had kind of a roller coaster of emotions and a lot of the other symptoms, so maybe he's right. I had absolutely no reserves in my body left. I was sick all of the time.

My GP told me my immune system was shot, and could I have AIDS? I don't. I had the beautiful Graves shins, shingles, pneumonia...I was sick of being sick. In the 2 years before the diagnosis, I had a spinal fusion, hysterectomy, shingles, pneumonia, an appendectomy..I really thought I would not make it to old age. And, still during all of this, my thyroid levels were never tested, and I had a history of being hyper. It kind of shows you that thyroid is really not a priority. I had a thyroid storm is what led to getting a diagnosis. It was actually a relief to give what ailed me a name.

Since the surgery, I have felt better than I have in a long long time. I had my gall bladder out in January. I also had a cast on my arm at the same time.  I have just been diagnosed with kidney stones. Andros tells me both stones can be caused by Graves. Even with this stuff, I still feel great. I have stamina, actual coherent thoughts, and a peaceful feeling. I no longer feel like a train wreck!

Surgery can be a great treatment plan. You just have to do what feels right for you because it sounds like what is going on right now for you isn't working the best for you. Best wishes to you!


----------

