[Gabe]

#1059773

Hi all, first reading all these posts has been a tremendous help working my way thru all the frustrations. It’s nice to know you’re symptoms are real and you aren’t truly losing your mind! I’m still trying to decipher all the terms and abbreviations many of you use. I was diagnosed 1/11/13. Saw an endo on 2/26 who doubled the methimazole to 1O mg twice daily and told me to stop beta blocker. However within 2 weeks heart was racing and blood pressure was consistently high. primary care doctor restarted the metoprolol.
My mental symptoms seem worse. Can’t form a focused thought, extreme anxiety, blast people for little things, mood swings, you name it!
Based on forum, I’m thinking about jumping right to TT ASAP. The endo wanted me to continue adjusting meds until JUNE! Can’t live that long like this.
Also my eyes are now swollen, puffy, watery, and they hurt slightly. Reading all the eye horror stories on the forum is scary. What the heck is OD!
So, will all this just go away with the TT and the synthroid? Not sure how some of you did this for years.
(My levels of thyroid hormone started at 0.005 and only went up to 0.017 on meds. Not sure what this means but gather its not good)
Thanks for a place to vent!

[Kimberly]

#1177416

Hello – Obviously, this is a difficult decision that you will need to make in conjunction with your doctor. The “Treatment Options” thread has a couple of nice links that go through the pros and cons of all the options.

Many of our members have been pleased with the results of thyroidectomy, but it’s important to understand that it’s not a “quick fix”. Post-surgery, your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. Some patients are fortunate and dial into the correct dose fairly quickly, but it could potentially take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.

OD is Orbital Decompression, which corrects the eye bulging that can sometimes occur with Graves’. The vast majority of patients will *not* need this surgery. However, since you are experiencing other eye symptoms, it’s definitely worth getting in to see an experienced ophthalmologist.

I’ve heard reports from a couple of patients that they did see relief from eye symptoms post-thyroidectomy…however, it’s important to not that this is *not* the case for every patient. Although thyroid issues and eye involvement *usually* occur together, thyroid eye disease runs its own course, which can happen even after thyroid levels are completely normal.

Hopefully, you are getting hard copies of your labs, so you can see for yourself where your levels are. It’s important in the early stages to make sure that dosing decisions are based on your Free T4 and T3 levels and *not* on TSH, which can remain suppressed for quite some time in Graves’ patients.

Take care – hope this helps!

[Gabe]

#1177417

Very helpful Kimberly. I will definitely start tracking ALL labs vs just hormone. Thank you for all your dedication to helping others!

[Gabe]

#1177418

Visited family doc today since I am a mess with anxiety, rage, moods, swollen eyes, etc. Told her I did not want to wait until June to see endo for recheck and that based on my research, and this website/forum, I wanted the TT NOW.

She wants my TSH up a little higher before surgery (started at o.oo5 and then to 0.017). New labs next week. Got the referral to her best general surgeon so anxiously waiting for pre-op appt, which could be weeks away. But at least there is potential for relief.

I know that TT isn’t perfect and comes with risk and won’t necessarily be easy but it’s got to be better than all these meds and the mental symptoms. So what should I expect with TT? I’ll start by checking out the treatments options section of this forum…

Thanks to everyone…this forum is the last thing I read before bed each night…helps me to feel like I’m not totally crazy…

Karen

[adenure]

#1177419

Hi Karen,

No, you’re not crazy. You’re hyperthyroid, and THAT makes us feel like we’re crazy! I’ve been there; it’s scary and you feel like there’s no end in sight and that you’ll never be normal again. I understand you 100%. I used to sit on my couch/ bed and cry because I couldn’t do anything. My heartrate jumped to 120 walking down the hall, I couldn’t be alone bc of the anxiety, I even had my husband sit on the toilet while I showered bc I was so anxious. My mother in law watched my children for the 2 months I was a mess or my husband worked from home. It was terrible. Methimazole got me back to normal for the most part, but it gave me liver issues (elevated enzymes- quite high), so I had to stop the methimazole and make a choice. I opted for surgery, and I’m very happy with my choice. I now take care of my children -all 4 of them- and homeschool them and have the energy to enjoy my family and my life again. I am so grateful. And, I shower all by myself too! Hee hee!

I do agree with your doctor that you should try to get your thyroid levels a little more in check before surgery. Surgery puts a stress on the body and cutting into a thyroid that is very vascular and hyper can make a thyroidectomy riskier for you. Also, you want your heart rate to be stable and normal (whether through betablockers or the methimazole) to be safe as well. I know it sucks waiting, but you want to be as safe as possible and have a successful outcome.

I started Synthroid 2 days post surgery and my dose was increased around 6 weeks later. I’ve been on that dose since (I’m 8 months post TT), and am doing well. It did take a good 4 months or so to feel strong and well again after surgery, but all the anxiety and hyper issues went away pretty quickly. Everyone is different, but if your doctor supports your choice, I think surgery is a good option. Good luck to you. Hang in there- it does get better, and life improves.

[Kimberly]

#1177420

adenure wrote:

Also, you want your heart rate to be stable and normal (whether through betablockers or the methimazole) to be safe as well. I know it sucks waiting, but you want to be as safe as possible and have a successful outcome.

Yes, for hyperthyroid patients, getting stabilized prior to *any* surgery is important to reduce the risk of thyroid storm. For those who just can’t get stablized on anti-thyroid drugs, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to help reduce this risk.

Hopefully, your doc is also looking at Free T4 and T3 in addition to TSH.

Here are a couple of good resources on thyroidectomy that will hopefully be of interest:

Video Presentation from GDATF 2012 Conference:
http://www.youtube.com/watch?v=0BfIbnrvmjY

American Assoc. of Endocrine Surgeons Patient Education Site:
http://endocrinediseases.org/thyroid/surgery.shtml

Hope this helps – wishing you all the best!

[Gabe]

#1177421

Thanks all, patience isn’t one of my virtues but now that I’ve made the decision and know there is light at the end of this tunnel I’ll push thru. Cut back my work hours and plan to work more from home and I’m blessed to have this option and an understanding employer.
Kimberly. My docs are checking all of my thyroid related labs but I can’t seem to remember what those numbers are….actually can’t remember much of anything!
My pre-op consult is June 5th with a promise that if labs dictate they will move it up. I’m nervous but convinced that I’m not the one to wait this out and do the medicine roller coaster. I know a lifetime of synthroid is in my future but my sister is managing her post RAI Graves very well after 5 years.
This forum is the best! All so sharing and caring…

[Author]

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