[ShirlSue55]

#1019484

Hi to all,
I have been reading/browsing this board since I was diagnosed with Graves Disease mid February this year. I am so glad to hear from other people that I am not "crazy" though at times I felt like I was losing it. I have experienced a major health crisis before–I am a pancreatic cancer survivor of almost 5 years now!!! I was diagnosed with a rare type of pancreatic cancer (Islet cell Carcinoma) that makes me "lucky" according to my doctors as less than 3% of peple with pancreatic cancer have this type.The other 97% of people with pancreatic cancer usually don’t survive. I was sent to the Mayo Clinic in Minnesota where I had a surgery called the Whipple procedure. Long story short–I had my "plumbing rerouted" as my family refers to it. The surgeons removed 10% of my stomach along with most of my duodenum, almost all my diseased pancreas and my gallbladder, then hooked everything back up. My GI system had to learn to work a new way. That experience really made me realize how your health can change so dramatically from one day literally to the next—BAM you see the MD for stomach pain, get a few tests and then a call that says you have pancreatic cancer. I was off work 14 months from diagnosis until I felt well enough to return to work. I ignored the signs of illness my body was sending at that time (2004) which is probably why I got the diagnosis of Graves so early now because my docs jumped all over my complaints thinking maybe the cancer had recurred.
I have had nutritional/absorption issues since my surgery in 2004 but had been maintaing my weight when a sudden drop of 16 lbs in 2 months (Dec 2008-Jan2009) and extreme fatigue sent me to my oncologist. CT scans were clean–no cancer which sent me to my GI doctor who looked at my puffy, swollen eyes that were painful by then and asked if I had ever had thyroid levels checked. Imagine my surprise when my TSH came back almost nothing. That got me sent back to my primary MD who rechecked TSH and ordered T3, T4 levels. By then I felt horrible, heart racing, palpitaions, chest pain, headaches, sleeping alot, crying at times because I felt so BAD, hence the crazy feeling–not me at all. I had a highT3 and slightly elevated T4 and was in T3 thyroxocosis per my MD. Got put on a beta blocker(metoprolol)and my dose ended up being 50mg twice daily to keep the heart stuff under control.(presently dosage is being tapered)
I went to an Endo who presented the treatment options.I consulted with my other MD’s and several people who had undergone RAI. My liver is fatty probably from my Whipple surgery and with elevated liver function tests now and the nutritional problems–long term drug therapy was not something I wanted to do because of possible side effects of the meds on the liver. I chose RAI and swallowed the pill to ablate my thyroid on Feb.25th.( one weekafter my uptake scan) I felt my worst during the 3-5 weeks after the RAI, probably from the release of excess thyroid hormone I was told. I am just now in the last week beginning to feel more like my "normal" self mentally– physically I still have a ways to go. My T3 was rechecked 1 week ago and is approaching the the normal range. I see the Endo again next month for more labs and maybe start replacement therapy hormone if my levels indicate that.
Anyway I just wanted to say reading all the posts and support given to everyone on this board inspired me to write this and hopefully help someone else see there is a light at the of the tunnel. I have been through much more physical pain with my cancer and surgeries but the effects of hyperthyroidism on my "mental" well being has been the worst part for me. I am very fortunate to have wonderful MD’s (and my family) who kept telling me "you will feel better, it just takes time" (plus a little Xanax at times) and I finally believe I am on the path to recovery and better health.

The quote under my signature is from a man who died from pancreatic cancer last year–Dr. Randy Pausch who some of you may have heard about from his book The Last Lecture.
Graves disease was not in the cards for this time of my life (I’m 54), it has forced me to play my hand differently now.

Thanks for reading this long post.
Shirlee

[hyperm]

#1071947

HI Shirlee – You are one brave lady!

WElcome to the board and we are all here to help at any point!

M x

[catsmum]

#1071948

Shirlee,

You are my inspiration to get through today.
Thank you for sharing your story.

W x

[Ski]

#1071949

Shirlee,

Thanks SO much for this post! Your story is so uplifting ~ interesting, too, that you say the pain you felt with cancer didn’t even compare to your mental anguish with Graves’. That does seem to be our biggest complaint ~ the hardest thing to deal with, and the last thing that other people understand.

Keep smiling, I’m glad you’re feeling better!

[ely2009]

#1071950

Shirlee –

What a story! You’ve been through so much and have such hope – you are an inspiration to me today. I’ve been feeling bad physically the last couple of days, which makes me anxious, and I’ve also been feeling sorry for myself. Well, no more. I want to be strong like you.

Thanks,
Emily

[ShirlSue55]

#1071951

Hi all,
Thank you all for the kind words….this board has helped me enormously in coping with my GD. Just reading that others had experienced similar feelings of losing it helped me realize I was not going crazy. I have good MD’s who reassured me this was a common complaint/symptom in hyperthroid patients, then I was able to talk myself through the anxiety because I knew there was a physical reason for how I felt. My husband and daughter have also been very supportive/understanding through all of this.
There are many truly amazing people on this board who have been through or are going through so much more than I ever have. All I can say is never let someone take away your hope–I had a surgeon tell me he would not operate on me because it didn’t matter since I was probably going to live only 18-24 months!!! That proves even MD’s don’t know everything–here I am alive 5 years later. Thank God for that miracle. I have been offering support to people with pancreatic cancer through PanCAN (the Pancreatic Cancer Action Network) by sharing my experience with others dealing with pancreatic cancer.

I still have days I feel bad physically and I feel sorry for myself but then I read all the messages of support and hope to others with GD on this board and that has helped me more than you all can ever know!!! So thanks to all of you for sharing yourselves and helping me get through some rough days even though you didn’t know that’s what you were doing! I only wish I had started postings sooner but felt so bad…

Thank you all for helping me. I try to check the board at least once a day now–I’m addicted!!
Shirlee

[RhondaG4]

#1071952

Shirl,
Thanks for sharing your story. Sometimes it seems like when your delt one thing after another…it’s like ok..someone stop this merry go round…I want off!!! But somehow we just keep going, one day and sometimes…just one hour at a time…and sometimes it seems like for me…just the next 5 minutes…then 5 more….then just keep going. Your an inspiration to all of us, and I’m glad we can be for you as well. This board is amazing, but the people behind it and in it are even more so. I can’t imagine how people got thru this 20 years ago all by themselves, it must have been really hard on them. Anyway, thanks again for sharing!!! ” title=”Very Happy” />

[DianneW]

#1071953

Shirlee,

I know exactly what you’re talking about. The mental/emotional pain I experienced during the years my thyroid was out of whack was so severe that I couldn’t possibly explain it to anyone in my life. Only others who had been through it themselves could understand; thus the support on this BB. One other poster who was a cancer survivor said her GD was much worse than the cancer for that reason (the emotional factor).

I’m entirely free of all that now, 13 years after my RAI, but it was a gradual process. I thought I’d be all well once I had the RAI and started on replacement hormone, but it didn’t happen quite that soon. There were several years of fluctuating levels, and even once my levels stabilized it took time for me to heal, apparently. But each year I am better and better I think. At 57 when my memory should be failing, I seem to be regaining some of the impairment that I experienced when I was hyper and then became suddenly hypo. I no longer fly off the handle. I no longer isolate from others, and feel very much as if I can deal with whatever comes my way. This is exactly the opposite of how I felt when I was going through the worst of the disease process.

The last couple of years I’ve been doing crossword puzzles and Sudoku puzzles to exercise my brain, and I review my college textbooks and do a lot of reading to keep my brain active. (This is something I started after I read a medical abstract which suggested that excess T3 can destroy brain cells, which if true would explain my experience with memory loss while hyper.)

I hope you aren’t as far gone as I was, but I write this to encourage you that everything will probably improve for the better in time.

We’re glad you have joined us. I hope you’ll come to the conference in October in Charlotte (details on the NGDF web page).

Best wishes,

[scoutgirl78]

#1071954

I feel the same way, I personally didn’t have any major health issues until now, but my family has many, MS, ALS and Parkinson’s just on my mom’s side. When this diagnosis came I was relieved (not that I won’t get anything else) but thinking that this would be easy to fix.
After doing Thyroid ablation on March 12th, I feel worse than ever. I am hoping it’s just going hypo, because, this is crazy! My husband and children are suffering, I try to keep it together for strangers, although road rage has crossed my mind. The endo wasn’t sure that I wouldn’t need another treatment and the NP in his office was shocked by my test numbers…I see the endo again on May 5th, but this has been a long road. My husband wishes I wouldve had it surgically removed, my moods are bad, my female system is messed up royally, I never know what is going to set me off into anger or tears. Have you all had the same experience? my only comfort is that with my moods and all that the one dose may have actually worked. What can I do to make this easier or better at all? For myself, my husband and my 3 children….It heartbreaking to be so screwy and not be able to control it at all….Thanks….

[Ski]

#1071955

Short answer is YES, we’ve all been through those things ~ it’s the toughest thing we deal with. How to make it easier? Well, my "pat" answer is to say, do those things that sustain you, that feed your soul, that make you feel fulfilled, satisfied, happy. Do NOT do those things that drain you, that steal your energy and give you nothing back.

You are early on in the process, believe it or not, but you’ve begun your treatment, so you’re getting closer to healthy all the time. Keep in mind that once your levels are normal, that’s your body’s signal to BEGIN the healing. You think you’ve been healing all this time, but you have not. Your body is in an emergency state right now ~ thyroid imbalance, or even rapid change in thyroid hormone levels, is interpreted by the body as a 911 emergency, because it would not normally happen. Besides the attack of hyperthyroidism and ITS effects on your body, your body is also reserving resources right now to make sure you live through this emergency. Your hair, nails and skin can suffer, because those things lose resources quickly in an emergency. Other body systems that keep you alive need the resources more.

Once your thyroid hormone levels reach the normal range and remain stable for some period of time (weeks, probably), then your body will remove the "emergency status," return resources to every part of your body, and at that point you will START to heal. So you will need to be careful with the things you decide to spend energy on for a while.

Set your own priorities, let some things go ~ the emotional side of this is extremely difficult, I know, so try explaining (in a CALM moment) that you find yourself carried away at times, that you feel just as helpless as those around you. Try developing a "safe word" the family can use to try and defuse those emotional moments. Let everyone know that this is a long road, and you need everyone to pitch in and help during this time, even if its just to let you know that they understand you’re having a hard time, and they’ll warm up leftovers tonight. ” title=”Very Happy” />

You’ll get there. Promise. ” title=”Wink” />

[Hopeful23]

#1071956

shirlee,
OMG, You are a brave, strong, women. I first want to congratulate you on your trust with your doctors and your success with your cancer. When I started to read your post I couldnt wait to get to the end I was hoping for an encouraging success story. You also prove the strength women are cappable to have. I am sorry you had to come down with this awful auto immune disease. I also gained hope from your RAI story. It seems to always be like week 3-5 that people seem to struggle the most. My dr thinks im going to do good. I hope so. I am going to keep your story and strength by myside.

In my prayers
Krystal

[Aravindh]

#1071957

Dear Shirlee,

You have given us a lot and lot of strength. I felt really brave on reading your post. Lets fight this together.

Thank You
Aravindh KN

[RhondaG4]

#1071958

Ski,
That safe word idea is a really good one. My 21 year old daughter has bi polar….and our safe word when things are starting to get out of hand for her is bi polar…..mine is now…Graves. Thank goodness I have an understanding family!!

[Author]

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