Coming out of Remission...?

The past few weeks I have been feeling some old symptoms creeping back. Had some sort of panic/anxiety attack on my way home from work tonight and my leg started shaking. Scared the crap out of me. My heart has been pounding erratically today. I am hoping that I'll feel better tomorrow, otherwise it's off to the ER. So hoping that GD is not going to take over my life again. I've been in remission for just over a year but now...I feel like life is spiraling out of control again. 

I didn't realize how many symptoms I have had of late, until I started writing them down tonight. So many of them I related to having a cold, or allergies or my menstrual cycle, but seeing them on paper reminds me how everything in the body is connected. 

Symptoms I've been feeling over the past two weeks

• Not sleeping much at night/exhausted all day
• Shooting pains in fingers and arms
• Rapid Heart beat
• Memory lapsing
• Brain fog
• Dry/gritty/heavy eyes
• Drastic Body Temp changes
• Stuffy head and ears
• Can't get deep breath
• Heartburn
• Gas
• Breast enlargement/tenderness
• Back//Hip pain
• Eyes not focusing
• Feeling Jittery/Shaking/trembling hands
• Legs shaking/"jumping" while driving

Feeling frustrated...

I've been mentally blocking myself from dwelling on the fact that this Disease still has so much impact on my life. I've been feeling better, but the mood swings are still around. It's like getting hit with a brick sometimes, other times I'll being doing great and slowly but surely, I start feeling angry or sad for no apparent reason. Which of course, in turn makes me frustrated and more angry... I have also been feeling completely disconnected from myself lately. I am looking into the possibility of depression, but I am hoping that it is just an adjustment period and things will improve as time goes on.

I've been doing some research to find out exactly what the antibody is that defines Graves' Disease. I'm tired of only finding articles about Hyperthyroidism and only small mentions of what Graves' actually is. I know the symptoms, I've dealt with them for over a year now...but WTH?!?!? How come there is no New news on this disease?

A few months ago, I watched  "Behind the Music - Missy Elliot", the story of Missy Elliot's bout with Graves' Disease. Although it's great that she is doing well and that Graves' was talked about, I am sorely disappointed in the way it was portrayed. If I knew nothing about the disease and watched that episode, I would Only think, "Oh, poor Missy E, she lost a ton of weight and got really jittery." (Very sarcastically too, of course). Another "celeb" that was in the news for a thyroid issue was Jose Reyes, former shortstop of the NY Mets (now with the Miami Marlins). His bout with hyperthyroidism was dealt with and brushed under the rug within about a month, and he was only "out of commission" for a couple weeks.

To me, these instances are not appropriately portrayed in the media. Any disease that is as debilitating as Graves', Hashimotos' or spontaneous thyroiditus, should have more coverage, better information available and better "Treatment" options,. Not just Fix 'Em and Forget 'Em.
I can't tell you how many times I've read and heard about Drs. who don't want anything to do with patients, especially those of us who want and need answers. The "Specialists" don't seem to know anything more than the basic conditions of Thyroid diseases. Most of the Drs. that I've found online or have been told about, seem to concentrate on Diabetes, with Thyroid problems as just PART of their practices. With Thyroid Diseases affecting as many people in the world as they do, why isn't there more concrete information and why don't Drs. do more to increase awareness?? Why does it seem that these diseases get brushed off the shoulders of Medical professionals and the Media alike? Is it because it's 'Hormonal" issues?

Awareness needs to be raised, not just about the instant impacts of these diseases, but the residual as well.

Reducing my dose of meds again...

Ok, so I went to my Endocrinologist today. It's been over two months now since she reduced my medication. (From 30mg/day to 20mg/day) My last visit showed that my levels were raised, but she said I should continue with the dosage. 

Here are my levels from the past few months:

6/16/10

TSH 3rd Gen.: 0.01 - Low
T4 Total: 7.4
Free T4 (T7): 2.2
T3 Uptake: 30

8/3/10

TSH 3rd Gen.: 0.29 - Low
T4 Total: 5.4
Free T4 (T7): 1.6
T3 Uptake: 30


Medication reduced about a week after the above results.


9/7/10
TSH 3rd Gen.:1.4
T4 Total: 6.0
Free T4 (T7):1.8
T3 Uptake: 30

10/25/10 Most Recent
TSH 3rd Gen.: 3.5
T4 Total: 4.8
Free T4 (T7): 1.3 - Low
T3 Uptake: 28


Not sure exactly how read these, so if you do, please help explain...?

My Dr. said that since I'm "obviously Not going into remission", that I should "seriously consider RAI unless I want to have kids right away"... (Does this seem normal?)
She also said "I want to see what reducing your dose to 7.5mg/2x day of methimezole will do for you". 
So, here we go...next visit is in January, hope I don't become too crazy before then.


I was seriously considering finding a new Dr. and actually called to make an appointment, but since I wasn't able to get one right away, I decided that I should hear my current Dr. out and compile all my notes and research together and make sure that it's not just Me being paranoid about my care. I've realized that what my current Endo is saying and doing seems to be quite normal in my situation. If I am wrong, I hope that I will find out sooner rather than later... I do find it odd though that she has Never once mentioned surgery as a possible option...

Food and GD

So I've been trying to find lists of foods that are OK to eat with GD and lists of foods to avoid. But I can't seem to find either. Just lots of websites telling me to avoid foods rich in this or lacking in that. I don't know which are or aren't. Why can't there just be a simple list to follow. I did post a link in my last post that had a small list, but not sufficient enough for me.

Does anyone know of one, or have any personal experience with certain types of foods?
Right now I pretty much just avoid:

• anything with artificial sweeteners
• anything that I Know is really rich in iodine such as seafood, (which is not difficult as I don't really like seafood too much to begin with)
• I've tried cutting back my sugar intake (which is really really hard because I have a Huge sweet tooth!)

My coffee addiction I'm sure is not helping, but I personally do not feel any negative results. My heart rate is always normal according to my Dr. but I have cut back, only because I haven't felt the need to drink as much anymore. I'm pretty much wide awake all the time even though I'm exhausted.

In the past I've tried to pay attention to what I eat and how I feel afterward, but that's so difficult to do all the time or I'll just forget to...

Where do I go from here?

I am going to my Endo in two weeks. I've been on 25mg. of Methimezole. I don't feel like I'm getting much better.

What to do?

Last time I saw my Dr., she said that if I am even considering having kids, I should do RAI and then wait 6 months to a year before even trying, in order for my body to adjust.
She has not even mentioned surgery or long term medication options.
Should I find a new Endo and or at least get a second opinion?
Should I go forward with the RAI?
What is the best thing for Me to do?


I can't stand the emotional imbalance anymore. 
I don't like who I've become, or the feelings rushing through me at "warp speed" at any moment of the day. I guess I'm just making myself a little nuts because I've been feeling that want kids...Now. Or maybe I'm not sure I want kids but want some sort of direction as to what I am really truly feeling and not just 'feeling' because I'm imbalanced. 
I know that nobody can tell me what I am feeling. Nobody can tell me which direction to go. Will I ever get back to "normal"?  Or at least "normal enough" to be able to have kids, or have a life that's fulfilling to me? My feelings today have me questioning the direction of my life. 


No matter how much research I do on RAI, surgery, or long term medicating, I am more confused and scared than ever. Why can't there be a solution to this disease that doesn't make things worse! I've been reading that even if the Thyroid can get put under control, the actual disease (Graves') will continue to screw the body up.
There are risks with doing nothing, there are risks in taking medication, there are risks for taking RAI and risks in having surgery... Where can I find the solution with the least amount of risk for me?

uugghh

I went to my Endocrinologist on Monday, she increased my dose from 20 mg of Methimazole to 25 mg. I thought things would be getting better. But starting Tuesday, my right eye has been twitching almost nonstop, the shooting pains are back and I am very cranky!

I want this all to stop! The thought of RAI still scares me, even though friends who have had it,  have said they wished they'd done it sooner instead of going through what I am. On the other hand, this could all go into remission...for a while. Apparently it's destined to come back.  The other option (which my Dr. has Not mentioned) is surgery to remove my thyroid. To me, none of these options seem right. 

I think we as a society need to find ways to prevent thyroid disease as well as treatment options. Future generations shouldn't have to go through this.
But how does one go about finding ways or researching something so complex?
My plan for the year is to hunt on the internet and find out as much as I can about the thyroid, iodine, how they interact, and what can be done to prevent the thyroid from becoming an interuption to life as we know it.