Need to vent! So frustrated!!!!

Ok, so on Nov. 1st, my Dr. reduced my dose of medication from 20mg/day (10mg/2xday) to 15mg/day (7.5mg/2x day). Since then I've been feeling hypER again. All the regular symptoms started popping up, but my mood swings and anxiety are starting to become unbearable. I hate feeling like this!

I called my Dr. on 11/18 and left a voice-mail explaining that I feel hyper and I'd like to talk to her about it and maybe get my dosage increased again until we can get a set game plan.

I received her response on my voice-mail later in the day. It was the shortest message I ever received from a Dr., "Hi Julie, You are not hyper.  Your last report does not indicate that you are hyper, if anything you are hypo. Call me on Monday."

Well now, let me get this straight Dr.!?!

At my last appointment you tell me my levels are ok, and you want to "see what reducing my medication will do.", so I take less, as prescribed, but almost instantly I start feeling hyper! 

Now you are telling me that because my labs, from when I was on a higher dose, report that I was ok, that I am suddenly hypO? Where'd that come from? And then you are going to completely rely on what a piece of paper says instead of how I, the patient, FEEL? 

I did not call her back right away as I was too aggravated. She called again and left another  message pretty much stating the same thing and suggested that I see my primary Dr. if I feel it necessary. I called and left her a message and faxed over a request for my medical records. I am hoping to see a different Dr. soon. I'm looking to get better results and a real game plan that I feel comfortable with.

Should I be worried?

So I weighed myself this morning for the first time since reducing my medication. I've lost a few pounds. My other hyper symptoms continue....Anxiety is the biggest one popping up lately, as well as feeling OCD... =( (I've never felt or at least been aware that I feel OCD before being diagnosed)

The one thing that has me a little worried is, I've been feeling so COLD! Now granted the weather is changing, but I live in SoCal, the lowest temp I've seen is 54 at night. But I am walking around with gloves on work with the temp being around 70. My core feels comfortable/warm, but but my fingers feel like they are turning into icicles. Is this "normal" for someone who's hypERtyhroid? Could this be a good sign that my levels are starting to regulate? I hope someone has some insight, I'm baffled.

Labs with Ranges

Ok, so here are my labs and what the report states as the ranges. 

My Dr. says I'm "within normal range", but I do not feel like I am. Unless of course I just don't remember What "Normal" is anymore... I did feel the best when taking 30mg/day of methimezole.

6/16/10

TSH 3rd Gen.: 0.01 - Low  (Range: 0.40 - 4.50)
T4 Total: 7.4 (Range: 4.5 -12.5)
Free T4 (T7): 2.2 (Range: 1.4 - 3.8)
T3 Uptake: 30 (Range: 22-35)

8/3/10

TSH 3rd Gen.: 0.29 - Low (Range: 0.40 - 4.50)
T4 Total: 5.4 (Range: 4.5 - 12.5)
Free T4 (T7): 1.6 (Range: 1.4 - 3.8)
T3 Uptake: 30 (Range: 22 - 35)
Medication reduced about a week after these results. Started feeling crappy again...

9/7/10
TSH 3rd Gen.:1.4 (Range: 0.40-4.50)
T4 Total: 6.0 (Range: 4.5-12.5)
Free T4 (T7):1.8 (Range: 1.4 - 3.8)
T3 Uptake: 30 (Range: 22-35)

10/25/10 Most Recent
TSH 3rd Gen.: 3.5 (Range: 0.40-4.50)
T4 Total: 4.8 (Range: 4.5-12.5)
Free T4 (T7): 1.3 - Low (Range: 1.4 - 3.8)
T3 Uptake: 28 (Range: 22-35)

I'd also like to mention that I was tested for Vitamin D levels and I am so glad I take it.

6/16/10
Vit. D: 24 (Range of 30-100)

8/3/10 - on 50,000 ui/2 x week

Vit. D: 64 (Range of 30-100)

10/25/10 - on 1,000 ui/day

Vit. D: 41 (Range of 30-100)

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...

Diet...?

Found this article today in search of diet restrictions for Hyperthyroidism.

I did not know that we are encouraged to eat Kale. I was under the impression that kale is full of iodine... Any thoughts?

Anyone have a successful dietary changes?

Info and Inspiration

I found a few more links to check out. See below:


Informational Article

Alphabetical List of Symptoms associated with Graves'

Interesting Dr.'s views and info...


I also found some encouraging and enlightening quotes I thought I'd share.

• Pain is inevitable.  Suffering is optional.  ~M. Kathleen Casey

• Putting emotion into words gives it a life and a reality that otherwise it doesn't have... Similarly, expressing confidence in a person's ability to accomplish something actually strengthens that ability ~ Arthur Gordon

• Today, see if you can stretch your heart and expand your love so that it touches not only those to whom you can give it easily, but also those who need it so much. ~Daphne Rose Kingma

• Encourage each other to build each other up, just as you are already doing. ~1 Thessalonians 5:11 TLB

• Although we cannot change the direction of the wind, we can adjust the sails. ~Unknown

• When you come to the end of your rope, tie a knot and hang on.  ~Franklin D. Roosevelt

• I know God will not give me anything I can't handle.  I just wish that He didn't trust me so much.  ~Mother Teresa

•  We must embrace pain and burn it as fuel for our journey.  ~Kenji Miyazawa

•  God uses suffering as a whetstone, to make men sharp with.  ~Henry Ward Beecher

•  Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity.  ~World Health Organization, 1948

 
Great Quotes

Venting...? Not so much anymore...I hope

It's been a year now, almost to the day that I was diagnosed with this awful disease... 
I've used this blog more for venting then anything else, but I want to change that going forward. I want this blog to become a reference point for others who are suffering.
I've researched and researched throughout this past year, and even though I don't feel as educated as I had hoped, I at least know enough to answer the general questions asked by family and friends.

I wanted to list a few sites that I've found useful and encouraging in my search for understanding. I will post more when I get permission from the bloggers I've been following,  I've started making a list to the left under my profile at the suggestion of the first blog's writer. =] (Thanks Christy).

www.mayoclinic.com
www.about.com
http://endocrine.niddk.nih.gov/pubs/graves/
http://www.livingwithgravesdisease.com/
Facebook Group

Having encouraging people  who are dealing with this disease in my life, although I haven't met any of them, has been the best thing for me. I am so very grateful to them all.
I will continue to research and share what I find, whether it be fact or just someone's opinion.

I'm feeling motivated...

...to not let this disease take me down.
I had a great night last night doing an aerial acrobatics class that really pushed my limits and yet I succeeded. It's a great feeling to know I can do that. I'm planning on starting a new exercise routine. Using muscles I forgot I had hurts, but I know the end result will be amazing, not just physically, but emotionally and mentally as well. I feel as though I am coming out of my latest "funk".
I've also been reading some blogs by other GD fighters and they reminded me that I really am Not alone in the battle. I need to stop feeling sorry for myself and to help encourage others. That in and of itself can be healing. I used to be such a positive person, always looking at the bright side of things, telling people it could be worse. Then, I was diagnosed and fell into a rut of self loathing and pity. Not anymore! I refuse to let it get to me as much as it did. I want to live life to the fullest and not let anything keep me from doing so!

My lab numbers did go up...

So I finally compared my labs last week from the past two times, and the numbers have gone up. I continue to feel hyper, so I believe they are still going up. My next appointment isn't until 11/1/10, a whole other month of dealing with feeling this crappy.
I am looking into new Doctors in the area, and hope to get a second opinion. Hope I can find one that my insurance will cover...