[ChristinaDe]

#1059683

Hi all!

Well, Friday I began to kick some Graves’ ass – my own way. I took a leap of faith, with all my fears intact…just wasn’t able to survive the limbo and helplessness I’d felt since the day I was excitedly told by phone, “You have Graves’…chuckle, chuckle”.

It wasn’t easy to take the control back. I cried all day Thursday, I spent Thursday night crying so hard that by the time I got to the hospital for my TT I looked nothing like my former self. I looked VERY sick. My eyes watered the whole time I waited to go back to the O.R. I listened to my iPod, checked myself out from everyone and everything around me…and begged for anti-anxiety meds which were happily provided.

I woke up in PACU w/ a sore throat and neck, and someone fussing at me to swallow 14 small calcium pills & telling me I wouldn’t be going home as planned, that my calcium had tanked. Too groggy to worry at that point, I just focused on swallowing (and spilling) my little pills. Once in my room, I learned that 2 of my parathyroids were moved, but didn’t need transplantation to another spot since they hadn’t moved that significantly. Something like that. So they think they’re just irritated for now & will likely be normal again within a few weeks to months. Til then, I take TUMS 4x/day & a prescription version of Vitamin D. Return to my surgeon this Wednesday to get checked over, and to get the path reports from the nodules that were removed in surgery.

My incision looks great. Really great. Barely any swelling and only a tiny bit of very pale bruising. No bandage, just glue…so I’m aloud to shower and all that. Pain is already going down, I think today I will switch to OTC relief. Voice intact, but wears out if I talk too much or too loud. Husband is loving that part for now. The voice is already getting stronger each day. Some neck stiffness, but the little exercises are really doing the job.

Here’s the biggie though. And this part may sound a bit crazy. But I swear that the second my head cleared from anesthesia…that I felt “different”. In a good way. I felt like I had less brain fog, less volatile emotions, less headache, quieter ear ringing, less swelling in my face & eyes, and my heart palps were completely gone. Just an immediate improved sense of well-being. I realize that I still need to get to the part of Synthroid adjustment, and that there will likely be periods of up & down with that…but, wow…I swear that I already feel less “toxic”. No one ever mentioned that I may feel that way right after surgery (although I do seem to recall one poster mentioning it a couple of months back). And since I’ve already begun on 100 mcg of Synthroid, I wonder if I’ll be able to avoid extreme fluctuations in hormone levels as I search for my sweet spot. I have hope.

So anyway, surgery went great, I feel great. And I’m so, so hopeful that this represents the beginning of the end of all the fear and malaise. And right here, right now…I’m so glad that I did it. Still can’t believe I proceeded without and endo (we parted ways the week prior), but my surgeon (who I absolutely love) assures that me that he can get me & my hormones level and then pass me back to my PCP afterward – until I can see the new endo at the end of June. But so far, I feel like no endo is better than an endo who causes anxiety and crying every time we speak.

I put this here on the Board to share some of the positive. Ever since 12/12/12, when I got my diagnosis, I leaned heavily on the words others wrote here…some for information, some for hope. And yes, sometimes to prepare for myself for the worst. This place has been my savior!

I think my first major lesson is this. Get all information you can, on the disease, your options (with all the plusses and minuses of each), then listen to yourself, what’s really important to you…and once you’ve got that part figured out…ACT & begin moving on…loaded with info, but on your terms. I’ve learned that waiting until I’m 100% sure to act, until I felt like a certain option was perfect, wasn’t going to work for me. I was going to live in limbo, denial, and despair. Acting was going to require a leap of faith. This is the best place I’ve been since the whole thing began.

Leaping into recovery now!!! Ready for whatever’s next…

[karenz516]

#1176785

@ChristinaDe, I like your positive attitude. I was diagnosed on 12/6/12 and had RAI on 12/12/12. May I ask why you chose surgery? Was it a medical or personal decision? I have a wonderful endo and feel blessed that he was at the hospital every day, seven days a week while I was in the hospital for two weeks and answered any question that my husband or I had. A little history, I had lost about 30 lbs over the last four months and was beyond extremely fatigued but it took my family dragging me to the family doc who ran blood and immediately referred me to the endo. Imagine my shock when on my first office visit I was in AFib (didn’t even feel it)180 bpm and my endo immediately hospitalized me. It took them days to get my heart rate down, and meds to protect my heart prior to the RAI. They kept me in the hospital after the RAI because of the thyroid dump. Today my heart rate is usually in the 50’s and 60’s and I feel good but I have days where my heart rate is up 90’s-100’s and I don’t feel as well, my biggest complaint on those days is feeling woozy and anxious. I am still hyper and understand it takes awhile to go hypo. Also my endo says that it will be tricky for awhile to get my synthroid dose adjusted to where it needs to be. I too am looking for better days ahead and have vowed to start taking better care of myself, learning Yoga, exercising more, etc. Keep me posted on the changes your experiencing since we were diagnosed at close to the same time.

[ChristinaDe]

#1176786

@karenz516, wow, you’ve been through a lot. Sounds like you’re beginning to improve. Glad to hear that! Looks like we’re taking this journey together, but down 2 different paths. Could be interesting!

You asked why I chose surgery & if it was a medical or personal decision (it was both). Like most of us, I was presented with 3 options and initially didn’t like any of them. All my caregivers were leaning toward surgery, but I was not. Not initially anyway. Here’s the thought process that ultimately got me to surgery:

My PCP, endo, and surgeon all felt that my odds of remission were pretty low since I’d already had the disease for years, possibly decades. I’m not sure how right or wrong they are on that. Seen literature that agrees and disagrees on that point. However, I went ahead with the tapazole and atenolol to see how it would make me feel and also to calm myself down enough to work through my options. While on tapazole/atenolol, I felt better and worse, and quickly realized that I’m very susceptible to the non-lifethreatening side effects of nearly every med I take. Also, while tapazole quickly brought my labs into the normal range & got rid of several of my symptoms…I felt worse in general. I also found that I’m extremely sensitive to fluctuating hormones, even when they’re fluctuating from too high to normal. So for personal reasons added to medical advice, I decided that anti-thyroid management was not going to be a good fit for me. I’m too inpatient. The idea of fluctuating hormones and putting up with side effects and constant tests and labs for a year or two, just to end up right back where I am now overwhelmed me. For some it’s worth it, their side effects and fluctuations aren’t as bothersome to them, and internally they hold a hope that I was never able to grasp on to…the hope of remission. Left me with 2 options.

So I moved on to RAI vs TT. All 3 docs were leaning toward TT since I have multiple nodules on my thyroid (some large) & seem to very sensitive to even minor fluctuations in thyroid hormone levels. But I think the biggest reason they were leaning toward surgery was the fact that I had nodules that would require follow-up if I kept them & some mild TED w/ mixed studies about how RAI may or may not affect it. I wasn’t too sure about all that, about anything really. But the thing that pushed me over to surgery, the personal thing, is that dropping my thyroid levels from hyper would be a nearly instant, one time event with a fairly predictable course. I translated that to mean less fluctuations in my hormone levels over a shorter period of time – something that is important to me. Plus, with no thyroid left to sputter around – my docs felt it would be easier to find my correct dose of Synthroid…and quicker. I’d only been a patient for 2 months, and I already couldn’t take it. I just want to get my life back the quickest and most direct route possible. For that, I’ll accept the scar and a few additional risks (especially since they were pretty low). I guess I’m a bit of a risk taker. Not entirely though…I found a top surgeon first!!

I read a study somewhere, think it was from the UK, that looked at why people chose what they did when looking at the 3 options. And which ones were happiest w/ the decision made. Their conclusion seemed to be that those who were happiest, were those who were well informed AND chose their path based on their own values, no matter which option was exercised. They found that those happiest w/ long courses of anti-thyroid meds tended to place a very high value on keeping an organ, even if it was struggling, while avoiding definitive treatments that can never be undone. Those who chose RAI tended to place a high value on definitive solutions while avoiding surgery and its inherent risks at all costs, so much so that they were willing to trade surgery risks for those associated with RAI. And those who chose TT, tended to place a high value on any intervention that got them to the end result the quickest, even if it meant taking on additional risks. (I’ve way oversimplified that study, but I read it during a brain fog!).

That makes a lot of sense to me. I believe that any of the 2 options will get you there…just need to choose the one that has the most of what you want with the least of what you don’t want.

[adenure]

#1176787

I agree with your general assessment on people’s opinions regarding treatment. I very much was one who wanted this to be “done and over with” quickly- or at least as quickly as possible. I knew that with RAI I’d be waiting and probably feeling cruddy while I waited. I also wanted to continue breastfeeding my baby which was a BIG factor for me. Plus, I didn’t want to worry about possibly conceiving too soon post RAI. We don’t have plans to have anymore children, but since we do not believe in birth control from a faith perspective, I felt more confident about the surgery. I also didn’t want to be away from my family for a week or worry about them. Again, I know that a person could be in my exact situation and prefer RAI and weaning her baby and there is nothing wrong with that. That is a good thing about options; each person can do what works for him/ her (with a doctor’s approval). My doctor wasn’t recommending surgery as he felt it was invasive (which it is) and that RAI was a “no brainer”. He did, however, respect my decision and supported me in my choice of surgery as I was a good candidate for it. It isn’t to say that surgery is a walk in the park, but if I had to choose again, I would choose surgery over RAI. ATD’s weren’t an option for me bc of the liver issues. Probably a blessing in disguise I guess- pushing me into what I might have had to do at some point.

[karenz516]

#1176788

@ChristinaDe, thanks for your story, I too have only been a patient for two months and I in hindsight I think this might have started in July or August but wrote it off as 56 years old, stressful job, etc., I too wonder how long it was really going on. I am glad everything went well for your surgery, how are you feeling now? Like I said my endo said I was still hyper but my numbers have gotten closer to where they should be but I am in the waiting game good and bad days. Keep in touch as to how you are progressing.

[ChristinaDe]

#1176789

@karenz516, I’m 51, and like you I spent some time thinking that my health woes had to do w/ stress, menopause, and plain old aging. When I found out the truth, that I had a chronic disease, my emotions bottomed out. I think I was almost grieving. Just wanted to crawl into a hole. The despair & denial, OMG!

Finally doing something, finally making a decision, any decision, seemed to restore something of my old self in me. As for the surgery, it’s only been a couple of days and I can’t believe how good I feel. Neck & throat pain are resolving rapidly, voice is very near normal in strength already…and I swear I feel better in general. This is the clearest my head has felt in 4 years, despite still taking the occasional vicodan. My heart feels so normal that I forget it’s even there now! I’m tired from the surgery and anesthesia and pain meds, but it’s a totally different kind of tired, more bearable. And my mood! It’s normal. It sounds like you’re already experiencing improvement as well. I’d say that we’re both well on our way (although we both know that we each have a little more progress to make). I hope you’ll keep posting, I’d love to know how you’re doing!

I am bracing myself for some bad days & trying to view their possibility as just another forward step to feeling well. My surgeon says that I can expect to feel a little hypo, or maybe a little hyper as we tweak my Synthroid in the coming weeks but since we started hormone replacement on the day of surgery he’s not expecting me to swing too far in either direction. It’s still too soon to know how I’ll do with that part…but I feel more in control, more optimistic, more effective than I’ve felt in ages. And coming off the tapazole feels so good. I was one of those rare people that just didn’t feel well on it despite its ability to bring my levels to normal almost immediately.

@adenure, I really need to thank you. I was losing it going into my TT, feeling as though the life that I once knew was over no matter which option I chose. Feeling like nothing was in control in my life anymore. All that sort of thing. So many fears, last second doubts, even panic. But hearing your story & seeing that you seemed to be doing so well, despite needing a “tweak” here and there and having young children and all the responsibilities that come w/ that (far more responsibility than I’m currently dealing with)…well, I hung on to your words for dear life, and created hope for myself out of them. I appreciated your honesty as well as your positivity. I still do. And I really hope that everything continues to get better & better for you.

I feel like I’m taking a journey with both of you, and that we’re all going to be just fine in the end. I’ll try to shorten my future posts. But between the head that’s finally clearing and the pain meds…I seem to want to ramble!

[karenz516]

#1176790

@ChristinaDe, Please don’t apologize for your long quotes, I appreciate the information and it is nice to talk to someone who is going through it at almost the same time as I am. Most of the information I have read said women are more prone at a younger age to develop Graves Disease and I asked my endo and he said I will have Graves Disease all my life even though I had the RAI.

Wow, four years since you have had this I can’t imagine the rough road you have had for so long. I think me being a Type A personality and the person who is always taking care of everyone else it has been difficult for me to be on the other end and being the one being taken care of, quite frankly I stil cannot get use to it. Today is my first day back to work in over two months and I am not looking forward to the rat race.

Let me know how you are feeling when the hypo begins, I am curious as to the symptoms, I wish I had a list of symptoms at least I would know what to expect. Given my age, they say joint aches and pains, well I have that every day!!

[Kimberly]

#1176791

@ChristinaDe – Thanks so much for sharing your story! This will be a huge help to future patients who are struggling with a treatment decision.

[TraceyAnne]

#1176792

WOW, I have such mixed emotions after reading all of your wonderful stories! I am a 44 year old woman diagnosed in August ’09. My long journey has been just like everyone else’s…up and down and very difficult. Since January ’10 I have only felt “normal” once, for a couple months. I will try to keep this short because I have more questions than answers and want to hear more than I want to say, but face it, none of our stories are short, so I hope you all can bear with me. Let me first say, I was only diagnosed because I was having constipation issues and the gastro doc wanted to rule out hypo. But instead began my GD journey to hell. Since I was not presenting with any of the hyper symptoms at that time, I did not seek treatment. I did see an endo to confirm my diagnosis but I did not like him and did not go back. I decided immediately that medication was my treatment of choice and at the time refused to entertain any other option. When I finally stared presenting serious symptoms almost a year later, I saw a colleague in his office. She was not a thyroid specialist, but I figured she knew what she was doing being in the endocrinology department. She started me on 30mg/day of methimizole. I respond very quickly to the meds but she did not decrease me quick enough and within 6 months I was severely hypo and had gained 30 pounds. I immediately went to my PCP who took me off methimazole and put me on antidepressants to help me with this new misery of of being hypo. Then began my search for a new endo. I found one a few months later and love her. She has been treating me now for a year and a half and has done a great job. She is very patient-centered and her only concern is my well-being. She started me on 30mg/day and within 3 months weaned me down to 10mg/day where I have been for almost a year. Over the summer (’12) was my best time since being diagnosed. In July my T3 & T4 levels were perfect, but my TSH still almost non-existent, but I felt so good and normal over the rest of the summer, I didn’t seek another appointment until December…and it turns out, I was in remission!!! My endo said that now was the time to make those final adjustments as I was teetering towards the hypo end of normal and she wanted to keep me in remission. We are now making those minor med adjustments and have been at 10mg, 5 days/week and guess what, I am miserable again. My emotions are all over the place, my thermostat is broken and I’m losing hair by the handfuls. I never lost the entire 30 pounds, but did lose 15… that has now come back. I am always tired, bitchy and on the verge of tears. Oh, did I mention I have not had a libido for the last 3 years. My husband and I have been discussing my alternate treatment options because I no longer like this ride. And that decision is soooo hard to make. I had an appointment today and my TSH, T3 & T4 levels are still about the same, normal, but she is concerned about my antibody levels and that I am still moving toward hypo but having some “breakthrough” Graves symptoms. So we readjusted my med intervals. Now I will be taking 10mg every other day. She also prescribed atenolol to see if that would help me get a good nights sleep and curb a bit of the lethargy and moodiness. I mentioned a more permanent solution and she said “not yet”. She knows how I felt about it before and is really trying to keep me in a good remission state. As it is the dead of winter in New England, I have decided this is not the best time for me to make this decision. So I will follow doctors orders and go back to her in 6-8 weeks and see where I am at. Now that I have read your stories, I long to feel normal again. To not have the constant up and down moods. To not be losing clumps of hair every day. To not have to put a blanket on, take a blanket off; turn the heat up, turn the heat down. To be able to lose at least that 15 pounds again. To be me again! After reading such positive results I am no closer to knowing which road to take, but know that I will probably walk a new path sometime this year. I don’t yet know which choice to make but hope that you will all continue posting to this thread. I find this to be so frightening, yet so enlightening and I hope that through all of you I can make the best choice for me. Thank you for you positive experiences. I know there is hope, but it’s not easy to get there.

[adenure]

#1176793

Thank you for your kind works. My mom thinks that “sticking around” the Graves boards isn’t healthy for me, but it is. It helps me stay connected, and also I really want to try and help others who are on this journey- especially those who might be moms or breastfeeding. Being hyperthyroid was the scariest time of my life, and if I can help anyone through it in any way- whether it’s my ATD, surgery, breastfeeding, mom perspective, I hope that I can. I’m glad my words helped you. Makes me happy!!! I’m so glad you’re doing well now.

TraceyAnne, stick around and get the support of everyone here. It’s a really good thing! Maybe start another thread of your own to introduce yourself so others will see your post. Welcome!

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