# Newbie with potential surgery in 2 weeks. My choice-HELP!



## HeatherCNola (Mar 11, 2013)

Hello everyone,

I am so happy to have found is forum. I have googled hashimotos/choking so many times and somehow never found you..until today. I am thankful I did. Here is my story:

I lived over in Texas for about 5 years and during that time I went from running almost every day to feeling sluggish, depressed, freezing, weak and dead. I am 41 now but at the time I was in my late 30's. I went to the doc and had blood work show low vitamin D as well as hypothyroidism. I also mentioned to him that I would sometimes wake gasping for air. He ordered an ultrasound and some nodules showed up. This doctor had a very standoffish manner and gave me the results but never prescribed anything. Forward a year later..another ultrasound and blood work. Nodules looked the same..blah blah. No meds and still feeling terrible.

We moved back to New Orleans 2 years ago and I was determined to have mind over matter. I trained and ran a half marathon. I look back and don't know how I did it. I knew something was wrong. New doc..same results only this time she prescribes me Synthroid and after I tell her about my choking in my sleep she sends me to a surgeon. She suspects its my thyroid. That meeting with him was the first time I heard the word Hashimotos. As soon as I told him I choked in my sleep he said it. He said it also coincided with all of my other symptoms. I elected to wait and see. I had another ultrasound to which they said not much had changed in the nodules. Stayed with Synthroid only now it's 125 mg.

It was recommended that I go to an endo at this point so 5 and 1/2 months later I saw my newest doctor. That appt was 2 weeks ago. He performed another ultrasound as well as blood work. The blood work shows my TSH at 0.07. T4 free 1.49. T3 is 83. He called me to tell me that the thyroid goiter has grown in comparing the ultrasounds and that is why I am choking. He said obviously the Synthroid is not successful in stopping the growth. I elected to wait until May. I was hoping to let my daughter who is 13 finish middle school and also my husband has a reward trip through work that is in April.

Here's the problem. I am so sick of this strangling feeling. I feel like it is even in my chest. I choked last night several times and shot up out of bed, waking my husband, scared to death..heart racing. Like I am dying. I woke up today and found you guys. I read your success stories as well as the difficulties. I've been in contact with my doctor and he says I can get in right away.

Here are my questions, if I have the surgery march 25, could I be ready for the trip (supposedly relaxing no stress) by April 17? Should I just wait and deal with this until May? I so want to be the post op girl who kicks herself for waiting too long and just feels terrific after. I want my old self back. I am ready. Any advice is appreciated.

Thank you all for being here for people like me.


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## Octavia (Aug 1, 2011)

Hi, and welcome!

Since you're already taking the medicine, you're pretty much where you will be after surgery, but without the extreme discomfot and choking. And by that, I mean that you will have to take the little pill every day for life, but since you're already doing that, then I'm guessing that won't bother you (the thought of the little pill every day really bothers some people). But I suspect that the rest of you will feel a *whole lot better *when your body isn't working so hard to fight your thyroid.

I didn't have hashi's, so I'll let the more experienced voices comment further.


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## joplin1975 (Jul 21, 2011)

I think it depends on what kind of trip you'll be going on...if you are going to be laying on the beach kicking back, it should be fine. But if you'll be, say, hiking, you might want to hold off. It also depends on the plan for post-op replacement medication - ask about your surgeons plans.

I found the surgery to be relatively easy, but the whole post-op hormonal upheaval is wacky. I had everything from hot flashes, to chills, to weird acid reflux, to total brain fog.

That all said, as I commonly tell people, I got my stitches out 11 days post op. My husband and I came home and re-roofed the house (ya know, the usual!). I felt off and tired, but I made it.


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## Octavia (Aug 1, 2011)

Heather, could you clarify...are you wanting advice on whether to have surgery, or whether you'll be ready for a vacation 2-3 weeks after surgery?

Before I knew I needed surgery, I had a ski trip planned with a friend. I thought I'd still be able to go after surgery, but she suggested moving our ski trip up a few weeks so we could ski before surgery. Thank goodness we did! There is NO WAY I could have gone skiing a few weeks after surgery...skiing is hard work. Really hard work. But I DEFINITELY could have done a beach or relaxing vacation. Without a doubt.


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## HeatherCNola (Mar 11, 2013)

Octavia, thank you for your advice. I've been taking the pill daily for two years now and know I always will. If only it were that easy! I'd never complain.  I'm hoping for relief after this.

Joplin, thank you as well. The trip is a beach one so that part should be easy except for no swimming I suppose. I'll definitely check on that. Your roofing gives me confidence. I'm not one to sit around waiting for things to get done. I hope that helps me and doesn't hurt me!  This wont be my first surgery. I also have Crohn's disease and have had surgery with that. I'd like to think I'm pretty tough pain wise. What scares me the most is depression, weight gain, and complications. If I could just be sure ill feel either like this (minus the choking) or better, I'd be happy.


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## HeatherCNola (Mar 11, 2013)

Octavia said:


> Heather, could you clarify...are you wanting advice on whether to have surgery, or whether you'll be ready for a vacation 2-3 weeks after surgery?
> 
> Before I knew I needed surgery, I had a ski trip planned with a friend. I thought I'd still be able to go after surgery, but she suggested moving our ski trip up a few weeks so we could ski before surgery. Thank goodness we did! There is NO WAY I could have gone skiing a few weeks after surgery...skiing is hard work. Really hard work. But I DEFINITELY could have done a beach or relaxing vacation. Without a doubt.


Octavia,
Sorry for not being clear. I know I need the surgery. When the doctor called to tell me that it was just getting worse and that I will continue to have these symptoms and needed the thyroid removed, I asked to wait until June. I was wanting to get through this school year, Jazz Fest, the vacation..etc. However, I am a little beside myself at the number and severity of these choking episodes. Not to mention I have a pain in my throat and chest 24/7. After finding you guys and reading several posts it seemed possible to hurry and get it done and still be ok to go to the beach on April 17. I won't have to do much else..maybe get a much needed massage. I am really hoping for some direction from all of you. My doctor never got back to me is afternoon to let me know anything other than since I just saw him, I would not have to see him again to go ahead with it. That I would just go to the surgeon now. He is so hard to get ahold of. All of this communication went through an email system called My Chart except for the initial call to give me the news. It's pretty handy but I have questions!!


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## joplin1975 (Jul 21, 2011)

I think it sounds like you are not doing well with the inflammation/nodules. And if your vacation is a relaxing one, you may be better off having the surgery beforehand.

I had a really easy time. Speaking very generally, it seems like most people have an easy time *but* if they encounter issues/troubles/complications, it can take time to resolve. If this is more of a once in a life trip, I'd wait. If this is something you'd be bummed but not horribly upset if you absolutely had to cancel, them I'd go forward with the surgery.

Good luck!


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## I DClaire (Jul 31, 2011)

Hi neighbor!! I live in Shreveport! I don't think I've ever shared with anyone here why I delayed my thyroidectomy for a month but, hey, they already think I'm nuts so what's one more story???

When I asked my endocrinologist if surgery wasn't going to be in my future sooner or later, everytime I had a 6-month checkup new nodules were appearing and old ones were growing, she said yes. The medication I was on kept me feeling really goofy and I honestly thought surgery would at least get me off the emotional rollercoaster of worrying, tests, etc. So, she sent me to a surgeon!

The surgeon only had a couple of openings - one rather soon, one a month later. I wanted the earlier one but there were vacation plans to be considered. Not mine but my daughter's! She and her husband were going to Ireland for three weeks and my husband stayed at their home in Texas cat-sitting! I waited a month for surgery because of my little grand-cat!

I had complications in surgery - my overnight stay turned into almost a week in the hospital because my parathyroids were injured and they wouldn't release me until my calcium levels stabilized.

I went home on either Wednesday or Thursday and the following Saturday we drove to East Texas for a family reunion. I was not in any pain but my energy level wasn't 100%!

My only thought would be if you're going somewhere totally restful, odds are everything would be fine. If you have to pre-pay, etc., I'd be more concerned, there is always a slight possibility for something you might not expect to happen. Your throat may be a little tender to enjoy all those fried shrimp!!


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## HeatherCNola (Mar 11, 2013)

I DClaire,

Hello neighbor! My mom, dad, grandmother and cousins are all in Shreveport. I hate that I'm going to miss the air show.  That's always one of my favorite things because my grandmother is in Shady Grove.

Thank you for sharing your story with me. I read this forum all day and saw some other posts of yours as well. I just told my husband just now that I'm actually surprised at how much better people feel on here. I guess I hadn't realized much would change other than the choking/swallowing parts. For that I am excited.

This vacation is something that my husband was rewarded with for hard work. There will be lots of other people from his work there. In the past there were more dinners and group activities but due to current times, it's a bit more low key. We will be on our own and able to just relax this time. It has been a long time since he's gotten the trip and acknowledgement for his hard work and I'd hate to mess it up or even worse miss it. From what I'm reading it looks like I will be fine. Like I said before..I'm pretty tough!


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## Octavia (Aug 1, 2011)

Honestly, Heather, I think you should go for it and have the surgery before your vacation. That way, you'll be well on the road to feeling better, and you can relax with all of this behind you.

One thing you will need to keep in mind, though...you want to keep your incision/scar out of the sun for about a year so you don't get hyperpigmentation. So be sure to get some super-high-SPF sunscreen!


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## HeatherCNola (Mar 11, 2013)

I had a message from the doctor this morning. He said his nurse would call me today to schedule the surgery. Sure wish I could sit with you ladies for a while to ask all of these questions running through my head right now.
:scared0015:


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## joplin1975 (Jul 21, 2011)

Just dump all those questions here...we'll get on them!


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## HeatherCNola (Mar 11, 2013)

Ok..consult with surgeon is for next Monday at 2:30.

When you see my latest blood work (and I apologize for asking for help with this..I did read all the links in another post about reading my #'s..just didn't get it quite yet) how does it look like I am doing on 125 mg of Synthroid?

TSH 0.07 (0.45-5.50)
Free T4 1.49 (0.80-1.80)
T3 Total 83 (60-181)

Will I continue to take the Synthroid straight up to and after the surgery? When will they do the first tests to see if I am right? How often do they check? Will they change meds or just strength of it? Will those numbers dip or does it look like my thyroid is not doing anything for me now so I might just feel same?

Weight gain? I read a post where someone had been really careful what they ate but put on 10 pounds in a month. Will I do that? Is this something that cannot be controlled like we control our weight all our lives? With exercise and eating right? Will I have to give up everything I love? I live in New Orleans! We are surrounded with awesome foods and drinks! I am used to cheating but paying for it with exercise or a week of salads. Are those days over? I am 5'5" and 120 right now. I did just lose about 10 or so pounds last year once my meds were right..plus I dieted very hard. I was so tired of my weight not budging. This goes hand in hand with my next question.

Depression. I have read about it coming on after the thyroid goes. Before I found you guys, I had found other forums of horror stories. Depression, weight gain, hair falling out, freezing cold, no energy, can't get out of bed. It scared me to death! That is why I canceled the first surgery. I figured I'd rather choke to death holding on to this thyroid and take whatever it's giving to me than to lose it and gain all that stuff. Then I started thinking that probably the people with great results weren't sitting around writing. I mean there wasn't ONE good post on the site. It really worried me. Then I found you guys. Good results, happy you did it, better than ever, here helping people. I'm hoping that's me.

How is recovery? Will I be able to drive my daughter to school, do laundry, make dinner, grocery shop, and give my dog her insulin shots a week after? A few days after?

I think that's a good start on questions. I apologize if any are redundant or dumb. And I thank you so very much for time and help.


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## webster2 (May 19, 2011)

There are no dumb questions! Ask away!

I was not depressed after surgery. I could function fairly well right after but I got sluggish after a few months. It took some time to find the correct medication for me. I am in my 50's and have autoimmune crapola going on too. With that said, I feel so much better since my last half of the thyroid left. It is hard to believe one little gland can raise so much havoc.

I went on vacation after the surgery. It was camping with biking and kayaking.

Sunscreen, v-necked tops and listening to your body will help you recover well. Best to you!


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## joplin1975 (Jul 21, 2011)

Yay!

Hey, listen, before I answer your questions, ask you surgeon how many of these s/he does a year, if s/he uses a nerve monitor (on you vocal cords), and how s/he closes the incision. 

Ok, now to your questions...

You look ok on the 125. From here on out, you'll really need to get the FREE T3 done, not the total. The frees tell you how much hormone is available for your body to use and will really impact how you feel.

Provided the pathology comes back clean, yes, you will continue to take the synthroid up to and after the surgery. 125mcgs is a good starting place, generally speaking, so I would guess they will test you six to eight weeks after surgery and adjust from there. Whether or not you stay on synthroid or not is all dependent on those free tests. It's hard to say what you numbers will do because you likely have lots of antibodies that are skewing the numbers. Unfortunately, you just have to hang tight and see how things shake out.

I was severely undermedicated post-op (had a TSH of 121) so I gained a good 27 pounds despite being careful. If you eat well, keep moving, and are medicated properly, you should be a-ok.

Because I was undermedicated, I struggled for a while. I told my husband he must've hit the lottery to end up with a full-figured balding woman. :tongue0013: Now that things are straightened out? I feel better than I have in years and I can't believe I didn't investigate this thyroid stuff sooner. In short, it can take time, but if you are patient, things will be much better.

I thought recovery was easy. I took two weeks off of work because my doctor insisted I had to, but I could have gone back after a week. I was taking business calls and emailing etc two days after surgery. I live on a small horse farm and I needed help (lifting anything heavy is a no-no immediately after surgery) for five days and then did fine after that.

I have a herniated disk in my neck that gets aggravated when my neck is hyperextended, as they have to do during surgery. My incision was virtually painless, but I had a stiff neck for a while. I also had stitches and felt like the stitches "pulled" when I turned my head. As such, I didn't drive for a week.

Good luck!!


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## Octavia (Aug 1, 2011)

Ditto what the others have said, and...

Since you are already on 125 micrograms, I seriously doubt your thyroid is doing much for you right now, other than causing pain. My guess (and I may be way wrong...time will tell) is that you'll end up on a dose from 125 to 150 micrograms.

I want to emphasize that the weight gain joplin talked about above happened because she was terribly, terribly undermedicated. I know she said that, but I just want to re-emphasize it. I have been without my thyroid for 2 years now, and I'm 5'5" and weigh 125. My max was 133 after two surgeries and having to go hypo for RAI treatment, but it came off with the same level of dieting and effort a "normal" person would need to do.

Yes, you will need to change EVERYTHING about your diet, including sending all of the beignets and fabulous creole foods you would normally eat up my way!  I'm totally kidding here. Seriously, as long as your replacement dose is correct, you really should be able to eat like you do now, without gaining weight. The key is to not be undermedicated. Make sure your Free T4 and Free T3 are in the upper half or upper third of the range for your lab, and make sure you feel good (not fatigued), and you should be good to go!

Regarding hair loss...I did lose some hair when I first had my thyroid removed and started taking Synthroid. But since you're already taking Synthroid, I question whether you'll have the same experience. We'll see. My hair loss wasn't noticeable to anyone but me because I have very thick hair (which I never really appreciated, but I did then). Today, my hair looks and feels healthier than it has in many years. It used to look and feel more like shredded wheat than hair. So much better now! Any hair loss is temporary (few months at the most) and it does grow back.

I had no depression. Recovery was easy. I was back to work about a week and a half after my second surgery, which took place about 2-3 weeks after my first surgery. A good friend had a hysterectomy the day before I had my first surgery, and believe me, my recovery was a walk in the park!

Yes, you will be able to do all of those things you asked about.


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## Octavia (Aug 1, 2011)

Oh, one more thing...keep in mind that those horror stories on the web are the vocal minority. They're valid experiences, but they're not as prevalent as the web makes them appear. Other than a few people here and there, most of us who are doing well are out living our lives and not posting our stories on the web.


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## webster2 (May 19, 2011)

I agree with Octavia, that the horror stories are really the minority. And, with Joplin to check your doc's creds...and you should be good to go!

I had the surgery twice, and no horror story here. And, I kind of like my scar.


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## HeatherCNola (Mar 11, 2013)

Wow..these experiences certainly give me confidence. I will find out all about this surgeon and make sure to have the FreeT3 and FreeT4 done as well.

LOL Octavia about the beignets and creole yummies! It's hard living here! As long as I can enjoy it sometimes but excercise like those "normal" folks do to correct it, I'll be fine!

Webster, thank you for your words as well. Scars never bothered me much..thank goodness!


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## HeatherCNola (Mar 11, 2013)

Well, I got a call yesterday afternoon from Dr.'s nurse stating that his wife is going to be induced for labor on the 18th so they rescheduled me for the 25th. I am so relieved. This extra week will give me more time to research and I won't be going to appt alone because Joe will be in town then. I hate that drive to Baton Rouge! Surgeon can still fit me in that week if I go through with it. Sigh...now I can breathe.


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## Andros (Aug 26, 2009)

HeatherCNola said:


> Well, I got a call yesterday afternoon from Dr.'s nurse stating that his wife is going to be induced for labor on the 18th so they rescheduled me for the 25th. I am so relieved. This extra week will give me more time to research and I won't be going to appt alone because Joe will be in town then. I hate that drive to Baton Rouge! Surgeon can still fit me in that week if I go through with it. Sigh...now I can breathe.


This is very good news! I have not commented because I did not have the surgery. I am leaving that sort of thing to the "experts" around here and we have quite a few who donate a great deal of their time to helping those who need questions answered.


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## Stripes123 (Jan 26, 2013)

It's going to be great!


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## HeatherCNola (Mar 11, 2013)

Thanks, guys. I so appreciate the help..ill be in touch after the appointment. :hugs:


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