# TT surgery for toxic goiter



## VFRgrl

Hi All; You can read my story in my signature. I have a toxic goiter (hyper) with NO cancer diagnosis- but due to size of mass (5.4 x 4.5 x 3.5 ) cancer can't be ruled out

Even without cancer diagnosis, my endo is recommending surgery due to the fact I don't have Graves and toxic goiter never goes into remission. Plus the side effects of long term Methimazole.

I've read so many horror stories about life post TT; like people saying they would rather be dead from cancer, they are a just surviving not living, etc. I am not feeling THAT bad right now and I'm wondering if surgery is even worth it? I am 88# overweight but I workout hard core and live a very active life. I have a hard time losing weight already- despite being "hyper" apparently. I lift weights, do Tabata cardio, run my dogs in agility, and on and on. I can't imagine being any heavier than I already am (endo said 40-100lb weight gain is normal post TT)!! I'm looking for references, articles, papers, anything that can reassure me that doctors CAN get the hormones adjusted after TT- and that I won't want to die every day and take 50,000 supplements 6X a day and have my blood drawn and tested for 85 things every two weeks and have to pay out of pocket because insurance won't pay for that much testing.

Thank you,

Lori


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## joplin1975

The stories you hear from people are valid...I'm not denying their struggles. But, I think you have to take a few things into consideration:

1) The internet is wonderful! And also a terrible rabbit hole! What you are reading are the worst possible outcomes. Why? Because the vast majority of the TT patients aren't in the internet trying to figure out what is wrong. They are out living their lives.

2) People who struggle post-TT are not being properly medicated. Unfortunately, its seems that us thyroid patients have to self-advocate and self-educate more than patients with other kinds of conditions. This might mean trying different types of meds and different doses and sometimes different doctors, which can take a lot of time and can impact your quality of life for the short term. But long term? Most of us would argue life without an ill-functioning thyroid is significantly better.

I, personally, feel about ten years younger. I weigh less. I'm more active. I feel more like myself. I'm better at juggling multiple tasks. On and on and on I could go. Did it happen immediately? Heck no! But it did happen. If you stay on this board and provide us with lab results, we can be very, very helpful.


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## Octavia

If an endocrinologist admits to having multiple patients who gain 40 to 100 pounds after TT, then he/she clearly needs additional training in how to medicate people properly post-TT. That is completely irresponsible.

If you are properly medicated after TT, you will be fine. Yes, there are people who post on the web about their nightmare struggles, but they are relatively rare. It may not seem rare because the people who feel good post-TT don't tend to document their situation on the web. Why would they? They feel good, why spend time on the web talking about it? Our long-termers and frequent posters here do well. And we're here because we want to help people like you also do well. Joplin is right (above)--you have to learn about the medications, learn how to read your lab results, track your results, and advocate for yourself. It's not rocket science, and having a good doctor who will listen to you is essential.

Quite frankly, I wouldn't continue seeing a doctor post-TT who thinks it's fine for his/her patients to be miserable and gain a bunch of weight. My surgery was four years ago. Prior to my surgery, I weighed between 125 and 135 pounds. I was just at the doctor's office a couple of days ago, and the nurse weighed me. 130 pounds. Same as before my surgery.


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## VFRgrl

Thank you both for replying. There are a few places where it seems like every single person has a crazy nightmare of an experience after TT. I've read the literature and my endo isn't wrong- the treatment for what I have IS surgery. Not RAI any more. Also recommend TT vs. PT because of the chance of recurrence- also noted in the literature. Please note I am a research scientist, so I can read journal articles and have access to them-there are not a lot of journal articles of proper medication after TT, although there are articles on RAI vs TT vs PT . I know the internet is a mixed bag- but there seems to be an overwhelming amount of people who have had bad experiences. Yes, you're right- the ones who didn't are probably off living their lives happily.

I'm just already frustrated with doctors because I feel like this has been going on for years and no one listened and now you want to cut it out and make me even sicker than I am now? I'm actively looking for another Endo since I feel he was extremely dismissive of my concerns. The good news is I live in the DC metro area so I have literally hundreds of endocrinologists around and for surgery there are several actual endocrine surgeons at Johns Hopkins; University of Maryland, and MedStar in VA.

Thanks,

Lori


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## joplin1975

From everything I hear, it seems like Johns Hopkins gets the best reviews (note: I don't live in your area and have no experience with anyone at that hospital...it's just what I hear).

Your best bet is to find a doctor who will test your free t4 and free t3 along with TSH after surgery. I honestly wished I was diagnosed sooner so I c&d have gotten rid of this awful gland and had a better quality of life. When I say everything is better, I really mean that.

Yes, the feeling around here is that surgery is much more preferable to RAI.


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## VFRgrl

I've also heard good things about Hopkins as well from several people. My Dad had his prostate cancer surgery there and it was a really good experience from beginning to end. The pre-surgical care, the process, recovery, etc. I've pretty much decided that would be my preference.

To be honest; I'm not worried about the actual surgery. I don't care if I have an ugly scar (most don't)- I'm pretty sure I'll be o.k. after since I'm very active now. My thyroid is huge and when I do handstand push ups I can feel it pressing on my throat. I'm sure it will feel better gone. I'm more worried about when its done and all the ramifications of being hypo thyroid the rest of my life- and medication/bloodwork nightmare. I know the long term effects of methimazole- and immune suppression and possible liver damage is probably worse than being hypo thyroid and having to adjust meds. I just wish it weren't so complicated.


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## joplin1975

Well, I've heard from lots of people that being hyper is much worse than hypo. It's probably not useful to get into some kind of competition on who's illness is worse, but...I was improperly medicated after surgery and severely hypo (see my signature). It sucked, but I never missed a day of work nor did I ever miss a day of barn chores (I have horses and throw bales of hay around everyday). Most days I still went to the gym and at least walked. It was a bummer, but it was short lived and absolutely managable.


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## jenny v

I'll be honest, it's taken me over a year to get my meds dialed in right, but I've lost 30+ pounds since my tt in Oct. 2013. Just make sure you've got a doctor who pays attention to your Frees and not just your TSH and is open to multiple medication options (I've gone from Synthroid to Armour to Westhroid) just in case it takes a few to find one that works for you.


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## KeepOnGoing

OK, brutal honesty time!!!

I'm one of those people who have struggled since TT - 2 and a half years on, my results can be all over the place and I'm still not right. I'm in the UK where the treatment options are more limited and I don't respond very well to thyroxine (very poor converter) in a country that views Cytomel with deep suspicion. My last set of thyroid blood test results led my GP to ask if they were even possible!

However, I've never, never got to the stage where I'd wished I'd just let the cancer do what it wanted. I've had months on end where I've felt ok, even good. And the bad times? Well, with the support of everyone on here, I've learned to advocate for myself, understand the results I'm getting and the options available, demand the blood tests I need and I'm making progress towards that goal of feeling GOOD. It's a bumpy road, but just once in a while I see the end in sight. And even when I was completely hyper (except the Free T3, which lives in the basement) I've never missed a day of work or cancelled something I've wanted to do.

And I'm one of the unlucky few who find it hard to adjust. Most people are absolutely fine, with just a bit of fine-tuning of the medication and then "onwards and upwards"!

So yes, it can happen - rarely - but it's still better than having a dodgy thyroid doing goodness-knows-what to your whole body.

And I've gained about 15 pounds since TT - mainly due to a lack of activity and a fondness of comfort eating. Having said that, I've just come back from a rainy run/walk, so perhaps I might even get rid of that at some point. NB the run was during what I'd describe as a "bad patch" - just goes to show what you can do if you're determined enough...


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## webster2

I think you, living in D.C., have many great options in the medical community to help you post TT. I am in rural VT and it took awhile for me to find the correct practitioner that realized I do not convert T4 to T3 at all. I think the biggest obstacle was to convince my endo to work with me and for me to understand that the goal of being in the 75% of the range is not possible for my body but I feel great so that is my benchmark to aim for, feeling great all the time. I take T3 and am still in the bottom of the range.

I am 55, pretty active and recently lost almost 25 pounds, I was not eating correctly before, I do not think my weight gain had anything to do with thyroid medications. I feel better than I have in a long time; that is a wonderful feeling.

You have a very active lifestyle and may find that losing the thyroid will not make you gain weight when your levels are where they should be. I lost a ton of weight the first time I was hyper and found I gained as much when I was hyper too. So maybe, your body will be able to find the perfect levels.

Best to you.


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## VFRgrl

Thank you everyone for your responses. Despite the fact that I live in a doctor-dense area- its still not easy to find the right fit- especially for an endocrinologist. I AM lucky though since I DO have lots and lots and lots and lots of options. I guess its just keep trying until I find the right fit. I did (due to all the recent issues) find a primary care doctor that I really like a lot. I am scheduling a follow up appointment with him to ask in the event I can't find a good fit with an endocrinologist- if he would be willing to treat me after the surgery.

I'm o.k. with feeling not 100%- since I honestly don't know what 100% feels like because I think I've been sick now for about 2 years with this.

I HAVE to be able to work every day. I have to be able to function and go out and do things with my dogs and my friends.

I do know that even now being mildly hyper- I can function. I go to work every day. I workout, I can do all my planned activities. Granted I'm pretty worn out all the time because I don't sleep all night. I'm sore because I can tell my muscles are weaker than a few weeks ago.

I'm hoping the methimizole works to get my TSH up enough to have surgery- because I DO NOT want the RAI. I just wish there was a doctor who would listen to everything I have to say, and discuss everything that is going on and options. The endo is a complete jerk and all visits from now on are 15 minute 'follow up' appointments. The last visit all he did was lecture me on how I have to go on a diet and how bad the side effects from the methimizole are.

Thanks everyone. Will keep you posted.

Lori


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## VFRgrl

Also; Do you think it would be beneficial to have an initial consult with a surgeon now? Even though I can't have surgery yet?


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## joplin1975

VFRgrl said:


> Also; Do you think it would be beneficial to have an initial consult with a surgeon now? Even though I can't have surgery yet?


Absolutely. I'm not certain about this, but it seems to me that some surgeons are more liberal with their guidelines re: when people are ready for surgery.


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## webster2

Yes, find an ENT and schedule an appointment for a consultation. I will admit my ENT was very accommodating in regards to my levels. The methimazole did not reduce them much. I was still actively hyper. My (I say that like he really is mine) ENT was in the top 20 in US News & World Report, not bad for l'il VT.

I had forgotten about the muscle weakness until reading your post. The insomnia is tough to take too. I wish you the best, this is tough stuff.


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## VFRgrl

Update: I have a surgical consult on April 2 at Johns Hopkins with their Endocrine Surgery department.

I'm still on the methimizole 3X a day. The muscle weakness has diminished- but the insomnia has not. I can workout with out extreme muscle fatigue now- which is good. I do feel like I'm going crazy because I have not actually slept a full nights sleep in a month! My primary doc prescribed a sleeping pill I may take this weekend just to see if it helps.

I've read the literature; I've talked to my primary doctor; and I think the best course of action is surgery 

I'm still quite (extremely) concerned about weight gain and exercise intolerance after the surgery. Not a trivial thing for me-though some may think so.

I feel like crap right now being hyper. I just need to remember that later on.


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## webster2

I never lost the insomnia until after the surgery. I tried everything except sleeping pills. Melatonin, valerian, warm milk & honey, booze..nothing helped.

I did experience some exercise intolerance after the surgery. I had a great deal of muscle loss prior to the surgery. My story has not been a quick fix but I ran 3 miles this morning and have lost 25 pounds recently. I am lifting weights now too. If I think back, I was really impatient to get back to life. It took me longer than most.


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## joplin1975

Good for you webster!


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## KeepOnGoing

Weight gain and exercise intolerance are NOT little things - having been through it, I completely understand your concerns.

But I've managed 5 weeks of gentle running now so, like Webster, it wasn't a quick fix, but I do seem to be getting there. And it's likely you will be there much more quickly (perhaps I recover at the same speed that I run - slowly!)


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## jade

TT doesn't always equal weight gain. Like you, that was a big concern of mine but I haven't gained a pound and might even weigh less because I gained a few from the methimazole pre-surgery. My jeans that were snug just after my surgery are falling off now if I don't wear a belt. No exercise or diet changes either.

eta: I just noticed your post where you said your endo said 40-100 lb gain normal post TT? That's shocking to me because my surgeon told me most people don't gain as long as their levels are right and my PCP said maybe 5 lbs at most.


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## VFRgrl

Hi Jade. I'm actively looking for a new endo- but the scientific literature also states in various journals that weight gain after TT can be "significant". Anywhere from 8% of your starting body weight to 22# ; I'd be totally o.k. with 5#. I'm not gaining on the methimizole- so that is goo. 40 to 100 lbs means that the endo sucks at managing people post TT so I'm looking- but as you know endos' can take months to get new patient appointments. I'm honestly still coming to terms with gaining any weight at all since I'm the heaviest I've ever been in my life after gaining 40# since 2012 despite diet and intense exercise. I can't imagine having to work out more- or eat less- but I will have to. Its just daunting as to where I'm going to find another hour on top of the one I use now to work out; and also to find out how to get to low calories per day without sending my body into starvation mode. I've hired a personal trainer and nutritionist so that should help.

I should never have read other thyroid boards because there are some really, really scary stories out there about life after TT. I try to use my scientific, rational side and read the literature- but the literature does show there are issues post TT that are difficult to resolve. I'm determined to get through this though. The thyroid has to come out. its physically pressing on my trachea now and who knows if the methimizole will get my levels where they need to be and I do fell like crap now.


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## webster2

I think there are more people willing to sensationalize their experience than be truthful about it. Little blips on the road back to "normal" are not nearly as exciting..so they don't make for a great story. This is a very good forum.


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## VFRgrl

I TOTALLY agree Webster! Its hard to sort through though; I have a masters degree in Biomedical Science so I'm not totally ignorant about biology- I can't imagine how hard it is for someone who has no idea. There is a lot of crazy and dangerous information out there. This board is amazing and well educated admins.

Thanks, I'll keep everyone posted!


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## webster2

I am a librarian and my science background is pretty limited. This board educated me and helped me navigate my treatment plan exceptionally well. Your science background will serve you well.


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## jenny v

I'm almost 18 months post-TT now and I'm down 30 pounds. Everyone is different and it can be hard right after surgery to get your levels right, but if you and your doc concentrate on getting the Free T3 levels right, I wouldn't worry too much about excessive weight gain.


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## squiz01

Wow your story sounds exactly like mine! I am hyper, I also have a 5cm cold complex nodule and toxic goiter. Currently on 10mg of carbrimazole for TT on the 2nd June. Two FNAs where both inconclusive. 15-20% chance of cancer. I will keep you posted on how the surgery and post surgery go for me.


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## webster2

Good luck, Squiz01.


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## VFRgrl

Countdown to surgery on June 10 begins. It will definitely be a TT  Start pre-surgical calcium and iodine tomorrow.

I am terrified. I am sad. I am depressed.

I had to be off methimazole for a scan last week and hoping my thyroid levels stay put for my presurgical bloodwork on Monday.


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## jenny v

It will be okay! And once you get your medication sorted out after surgery, you'll be glad you did this--no more worrying about your thyroid bouncing around and being hard to control.

Just make sure you've got everything set up for post-surgery (like v-neck shirts, soft meals like yogurt or scrambled eggs, etc.). It's much less stressful to have everything in order for when you go home to recover.


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