[CycleColo2013]

#1059977

Hi, I could use some encouraging words at the moment. Thyroid comes out on Thursday, May 23, a Total. As the day gets closer my anxiety level is rising.

I am 47. received the Graves dx in 1998. Initially started on PTU, about nine months later switched to Methimazole which I’ve been on since. I was not very good at managing initially – every time they told me my numbers were “normal” I felt terrible. So foolishly I would take less and less medication until I was taking none. I was also unhealthy: overweight, smoker, failing to eat properly.

I got better at managing it. We moved to Denver; I quit smoking and took up cycling and started eating better. Over a five year period I lost 50 pounds. During this time there were a couple of hiccups where medication was adjusted. In the last couple of years I was on 10mg of Methimazole every other day and was doing very well. Fast forward to three or four months ago – numbers all over the place, and I feel up, down and sideways. I guess after fifteen years I am finally ready to say I am not going to spontaneously go into remission. When my doctor told me I was off course I joked that I was ready to get a steak knife and take it out myself. He, and most doctors I’ve seen advocate for RAI. I’ve considered it over the years, but I simply can’t do it.

That leaves surgery which sounded like a great idea 30 days ago, and now I’m scared. I come from a long line of dark and brooding people that are genetically wired to anticipate catastrophe at every juncture in life, even in simple tasks like going to the supermarket. Twenty five years of sobriety combined with years and years of therapy have helped, however, this week I find myself using phrases in my head like, “if I make it off the table alive…”

To complicate matters, I have history of depression (onset long before Graves was a factor) and there have been three times in my life where it has been pretty debilitating. The last of these was in 2007 when I was diagnosed with PTSD – finally dealing with what I witnessed and suppressed six years earlier on 9/11/01.

In addition to having a supportive and loving partner, and very good psychologists, psychiatrists and medication, one of the things that saved my behind was to take up road biking. I am at it for six years. Last year I logged over 2,500 miles. This year my goal is 3,000. The rhythm of the pedals is almost a form of prayer, the absence of consciousness about anything other than the bike and my surroundings is the only form of meditation I’ve found that works.

I am not on a bicycle at the moment. My mind races. Am I screwing up the ability to have normal thyroid levels by getting the bugger cut out? But isn’t daily dose of a hormone that exists in my body better to take than a chemical compound? How long will I be out of the saddle? Will I be finally free of those aspects of depression and mania that ARE related to the Graves? Am I making a hyper-rational decision because I am in a hyperactive thyroid state? (I call it hyper-rational, not irrational, because I don’t believe all ideas that have materialized while hyperactive are bad ones.) Is there really anything that can properly be called “routine surgery.” It certainly isn’t routine for me. On the opposite end of the spectrum, I think, “How can you be so neurotic about this when it is a conscious choice you are making and not something you are doing because you are fighting something harsher than Graves?”

I guess I am wondering if anyone else has had these fears prior to surgery and/or are there athletes out there who have bounced back as strong as ever?

Thanks

[Kimberly]

#1179304

Hello and welcome! Wow, you’ve certainly had quite the rollercoaster ride over the last 15 years. I’m sorry for all you’ve gone through, but it seems like you’ve come out stronger with each challenge.

We do have some regular members here who have chosen surgery as their treatment option, and hopefully, they will chime in here. I’m sure that they will all tell you that anxiety and nerves prior to *any* surgery is completely natural.

This forum also has a search function (in the top right-hand corner of the screen), so you can run a search for “thyroidectomy”, “surgery”, etc. to read their stories. This is also an informative site regarding thyroid surgery:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://endocrinediseases.org/thyroid/surgery.shtml

The GDATF has a volunteer who biked 3,200 miles during the summer of 2011 to raise funds and awareness, and you might be interested in reading her story. She started off with anti-thyroid drugs, but later chose surgery as her treatment option. You can read more about her project here: http://greaterthangraves.com/

Wishing you all the best on this next phase of your journey!

[Boomer]

#1179305

Hey there Cycle!

You’re a wonderful writer and you really bring forth your feelings and thoughts with clarity and in a way that I think all of us can relate to.

I think fear, specifically the fear you’re feeling, is prefectly normal. Uncomfortable, yes, but 100% normal. I’m only recently diagnose and will have to make a tough choice as to which treatment I’ll receive, be it surgery or RAI, in eight days. I’m feeling the same fear that you expressed. Ugh…

I don’t know you but I know this about you: You’re a trooper! It’s been a long road yet here you are, articulate, twenty-five years sober (outstanding! 23 years off drugs myself), and still fighting onward and upward. That speaks highly of your strength and character. You rock!

I’m glad you found this site- for me it’s been an incredible source of strength and inspitration and I don’t feel quite so alone though this ordeal. I hope you’ll stick around because I need brave fighters like you to hold my cyber hand during the rough spots.

As Kimberly so kindly noted above- there are tons of GREAT resources here. The more I learn the less I fear for knowledge truly IS power. Take advantage of the incredible knowledge base that is the GDATF.

I’m glad you didn’t opt for the steak knife option although it sure beats the hare-brained idea I had that involved a grapefruit spoon, some stout twine, a pencil sharpener, and a potato…

Hang tough you brave soul and keep us posted as things progress. You don’t have to go it alone

Peace to you and yours,

Boomer

[PattiMeg]

#1179306

Hi there. I cannot address your surgery fears (I had RAI 2 years ago) but will tell you that I, like you, am an avid cyclist. 8 years ago I rode cross country and usually log an average of 3000-3500 miles/ year. By the time I was diagnosed with Graves, I was so sick that I could barely walk up a flight of stairs. I wondered if I would ever be able to ride again. The good news is that last year I rode 3200 miles and am working towards similar miles this year. As other people on this forum will tell you, the thyroid hormone replacement you will take is exactly the same as the hormone your body makes, and once you find the right level for you, you will be able to do everything you used to do.

I hope your surgery goes smoothly and that you are back on the bike real soon!

[SueAndHerZoo]

#1179307

Hi there, and welcome.
I will anxiously be following your progress as I, too, am sick of dealing with the ups and downs of Graves and plan to tell my endo tomorrow that I want the names of some surgeons that I can consult with. My endo is pushing RAI, I have several reasons I don’t want to go that route. I’d rather do “once and done”.

Sounds like I grew up in the same family as you. I grew up with a mother who screeched and whined that whatever it is I wanted to do would somehow hurt or kill me. No sports, no amusement parks, no trips, etc. Gee, wonder why I’m an anxious person.

I don’t think you would be human if you weren’t starting to get nervous and second guess your decision. And I’ll bet you almost wish that the surgery was medically mandatory so you could be relieved of the burden of having made this decision of your own free will.

I’m sure it’s going to be fine… I’ve read so many success stories about TT that I am starting to look forward to the future process but I’m sure if I get an appointment I will start to get nervous a week or two beforehand.
Sue

[Gabe]

#1179308

Hi Cycle… I’m 7 days behind you on the TT so I definitely feel your anxiety. Mine is scheduled for Friday, May 31st and as it gets closer I get more nervous. I know logically that I’ve made the right decision for me but that doesn’t matter when emotions and fears and doubts start invading the brain!
You have been thru this much longer than I have so I feel a little silly saying that I could not deal with 5 months of Graves nevermind 15 years. Meds are not for me and neither is RAI (mostly because of my eye involvement). I want this to be over and done with. Now.
I’m a bit older than you (54) and menopausal (you have no idea how that complicates Graves!) and I’m not nearly as active as you are. I’m hoping to get back into a physical lifestyle once this baby is gone, gone, gone.
I wish you the best and will be looking forward to reading about your journey. I’ll send positive vibes your way on Thursday!
Karen

[vanillasky]

#1179309

I haven’t had my thyroid removed (as yet) but my father did. He had thyroid cancer.

Having just had surgery last Friday myself, I was a nervous wreck and they gave me Klonopin with a sip of water just to get me to the hospital. I had to walk into the operating room. I kept asking myself “is this a dream?” I wish I wasn’t there but before you know it, you are out. Next thing you know, you wake up in recovery. It’s done.

Doctor came in to talk to me. This is exactly what will happen and we are all here supporting you. Try not to be afraid. Before you know it, it’s over!

Good luck!
Karen

[adenure]

#1179310

Hello!

I had my thyroidectomy almost 1 year ago and I am healthy & well again! Woo hoo! The anxiety and fear is completely normal. I cried right before the surgery (and many nights leading up to it). I was worried about all the “what if’s” out there and read way too many horror stories on line. I had to choose RAI or surgery bc methimazole caused me liver issues (which resolved once I stopped the meds.).

I don’t cycle, but I do spinning (indoor cycling). I will be honest and say that I can’t do as much as I used to do, but I am able to spin about 30-40 min. of hard cardio and feel great doing it. I could probably do more, but I keep it at that for now. Once I start to feel tired, I stop. I used to do 60-90 min. at a time, but for me, at this point, it’s about being healthy and taking care of myself, not spinning like a nut. Hee hee! Seriously though, having my thyroid out was the right answer for me. I started on 100 mcg Synthroid (brand) on day 2 after surgery and was increased to 112 mcg 6 weeks later after being slightly hypo with my labs. 2 weeks after the increase my numbers were normal and 2 months after, I felt much better! So, all in all, about 4 months after surgery until I started to feel really good again. So, it will take time, but you will get better and be well again. I have my muscle tone back (which I did lose when I was hyperthyroid) and I am a healthy weight- no weight gain issues.

Hang in there! Your journey to wellness is right around the corner. Just watch out for that 1st drink of water- take it slowly and coordinate it a bit. As an aside, I took 1000 mg of Tums 4 times a day the 1st week, 3 times a day the 2nd week, and twice a day the 3rd week as a precaution with calcium levels. Parathyroids get inflamed from surgery, so the Tums will help them during the 1st few weeks. Mine were not damaged and I had no complications from surgery. I also slept somewhat upright for the 1st 3 nights.

[Talley]

#1179311

Hi there;

I’ll be thinking of you tomorrow – I am sure your surgery will go well. I also live in the Denver area and a good friend of mine had her thyroid removed a few months ago (cancer) and the surgery and recovery went perfect.

I, like you, continue to hope my Graves will go into remission – seems as though my other diseases seem to do it so I continue to hope this will too…wishful thinking on my part, but since it has only been a year for me I’m not ready to take further steps yet.

We moved here from NJ – my husband was in 1 WTC on 9.11 – I couldn’t live there anymore…the worry I felt daily after the attack was debilitating. Life here is wonderful – seems to be a much healthier place to live for our family:) I wish you the best with the ptsd – that was an awful time for those of us back east as well as across the country.

Try to keep your thoughts positive for tomorrow – I believe this sounds like the “right” move for you at this time in your life. Focus on recovery and getting back out on your bike – the weather is, finally, beautiful!

Caymus

[CycleColo2013]

#1179312

Thank you all for these encouraging thoughts…I am going in less anxious because I am taking them with me. I will let you know how it goes!

[Boomer]

#1179313

CycleColo2013 wrote:

Thank you all for these encouraging thoughts…I am going in less anxious because I am taking them with me. I will let you know how it goes!

Sending big love your way brother.

Be well,

Boomer

[amosmcd]

#1179314

Wishing you the best today! I’m a little over 3 weeks out after my TT. I was also nervous about the surgery beforehand, worried I’d made the right choice, etc.

I keep an online TT journal here and just posted an update today. Hope you find it helpful. Everyone is different with how they recover, so your own post-TT journey will be unique. But expect ups and downs, so you don’t get surprised by them, and keep in close touch with your surgeon and/or endo while you recover (I’m sure they consider me a pest with all the phone calls I’ve made, but who cares!)

Keep in touch with us and let us know how you’re doing.

Amy

[CycleColo2013]

#1179315

The albatross has been lifted from my neck. Okay, that was corny but I am still a bit loop from the surgery meds. Glad to be out of O.R.
I cannot pretend to know what is best for any other person, however now that the fear has subsided, my conviction that this is the best choice for me. Happy memorial day weekend everyone.

[adenure]

#1179316

Yay! Congratulations! Glad to hear all went well. Have a wonderful weekend!

[Holly10]

#1179317

Hi Have read your story and I can draw so many parallels from my wife’s history over the last 16 years it is untrue. She was diagionsed in January 2012 and had TT on 9th April 2013. Whilst diagnosed in January 2012 with server symptoms I thinks it has always been lurking in he background.

All I can say to you is feel very different post TT and roman isnt built in a day but you get much better. I am not being dramatic when say it feels like I am living with a different woman.

Hope all goes well. Best wishes

[Author]

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