Part 1 of this post is here.
I mentioned in the previous post where I started with noticing issues and what happened to me. I split the post into two parts because I didn't want the monster post to be a book and because there really are two parts to it. There was a bit of time where I didn't do anything about it. Too many other things going on and the ENT pretty much told me he didn't want to deal with it unless something new developed. I left off with the ENT visit in mid-late April...
My fiance immigrated over the beginning of September, we married the end of September, went on a honeymoon the first week of October, and started adjusting to life as a married couple that had spent more of our relationship on opposite sides of the world. We'd been through a minor holiday, a major one (Thanksgiving), and were getting to celebrate our first Christmas together. Fast forward to mid-December. And I was fed up with the thyroid and nodule. Not sure when the inflammation started to never change or when the hoarseness really started to stay more than go, when I started to get tired and never regain my energy, but somewhere along the line it took hold and didn't go away. It was worse. I couldn't sleep well because I couldn't get comfortable enough to sleep at night because it felt like I was being choked. I always felt like I was in that pre-cold/flu stage where I wasn't actually sick with something, but felt like I was coming down with something. I had no energy, heck a lot of times I was coming home and would nap on the couch, then sleep the whole night through, and wake up still feeling tired. I knew my neck was more swollen and it always looked (to me) like I'd swallowed a rat and it got stuck. I decided screw it. I'd met my deductible with insurance for the year and we were still on the same plan (not an ACA compliant one, but with the extension we could keep it for a little longer), so I decided to heck with it. I'm going to see what I can get done.
I made an appointment mid-December with another of the PAs and my hubby and I went in. He didn't have his Employment Authorization Document yet, so he couldn't work and wanted to be there. I'm so grateful he was. Anyway, we explained what was going on to the PA she agreed that the thyroid was definitely enlarged. She asked if I'd been to see an Endocrinologist. I'd told her no and that was the end of it. Another ultrasound and another TSH and Free T4 test later we determines that my thyroid levels were normal and the nodule was unchanged (although, now I was hearing 3 cm, so I'm not sure what was up with that). She conferred with the ENT and he told her that since my levels were normal, that it wasn't an issue and he personally wouldn't do anything about it. Uh, yay? That still didn't explain a few things though. So I requested a copy of my blood tests because I wanted to see the numbers. Turns out back in March, my TSH was way on the high end of normal and their range was .34-4.82 and I was at a 4.49. my Free T4 was a bit high, but not out of range as well. It was .94 and the range was .59-1.17. In December my TSH was better at 2.56 (same range) and my Free T4 was up to .99. Apparently something got my TSH back down to a better part of the range, but it still didn't explain why I felt like crap. I was a bit desperate at that point.
Well, Christmas came and went, so did the new year. I still felt like crap and wasn't getting any better, so almost a month after the appointment in December, I was making another. By that time I was kind of a wreck. Work has been a bit stressful, I felt like crap, I wasn't getting any help outside of "Well, wait and see if it goes away. These things take time, sometimes up to a couple of years." By this time The Fella had gotten his EAD and applied at a place and we were waiting to hear back, but hadn't. I was starting to get depressed. I had a headache that was there fairly frequently and just really wasn't doing well, both physically and mentally. I made one appointment, we went over to the clinic to check in and the doctor I was seeing was called out on an emergency and I would have to reschedule with him or someone else. Rescheduled the next day for a different doctor. Thankfully, this time we were able to keep the appointment and no one was called out. We told her what was going on and got the recurring question of "Have you been to see an Endocrinologist?" and told her no, no one had referred me. She decided that that might be a good place to start. She didn't know what was up, but it didn't seem like a thyroid problem, so she thought the crazy expensive bloodwork he'd do would give us an answer. About 10-15 minutes in the office. I'm seeing a trend with the docs around here I think. You spend a lot of time waiting and then see them for 10-15 minutes, then you're gone. Oi. Anyway, she set me up for an appointment with one nearby for the following week.
We made it up to the clinic for the appointment and met with the Endocrinologist. I guess he hasn't been in the area long, the doc pointed out that they had a new one at that particular facility, but after meeting with him, it was a breath of fresh air. First thing he asked me was why I thought it was my thyroid. Pretty blunt, to the point, and kinda surprising when you aren't expecting that. I told him what I'd been going through, how I was feeling, etc. His next response was that he didn't think that was my thyroid because the changes in being too cold and too warm and a few other things were too quick. He explained that they thyroid is an organ that slowly changes stuff. It'd be stuff that happened over the coarse of several weeks, not every other week or so. He said he had an ultrasound machine in another room and asked if I was ok with him taking a look at my thyroid himself so he could see what might be going on. I was totally ok with that (someone was actually listening and considering what I said and not immediately dismissing me, WOOHOO). I'm laying on the little bed while he's doing the ultrasound and he doesn't say anything. Not one word. He lets me know he's done, grabs some tissues so I can wipe the goo off my neck, and asks if anyone has ever told me I have a very unusual thyroid. I told him I hadn't been told that and made a comment about this not being in my head then? He chuckled and said maybe not all of it. We went back to the first room we were in and he explained that there were some things he didn't have and answer for, so he did want to do some bloodwork. What he could tell me was that I had some very strong visual indicators of Hashimoto's Thyroiditis and that the nodule was a good size and near my collarbone, hence why it was bothering me. It was just in a bad spot and it was big. He couldn't believe it was still functioning, actually. It looked that bad. He didn't think it'd continue functioning for too many years though. He said while it was enlarged, he didn't see the type of swelling I was talking about, so next time it happened I needed to call and he'd get me in to look at it. The Fella and I were both just happy that someone was taking me seriously and actually acted like they were interested in helping. This was HUGE for us!
Got a call about a week later with the results--normal! I was confused. Nothing was mentioned about the 2 thyroid antibody tests, so I was doubly confused. This seemed promising. Well, later in the day it felt like my neck was swelling again, so we called to see if he could get us in. He was as good as his word and got me in that afternoon. I left work early and headed up there with The Fella in tow. Earlier that morning he got a call from the place he applied at and they wanted him to come in for an interview that Friday! Anyway, the endocrinologist ultrasounded my thyroid again and didn't see any noticeable change and wasn't really sure why my neck was swelling like that. One theory was the change in fluid levels since the nodule is cystic with some solid components. He said that given how I felt and with the discomfort I was obviously having, he definitely recommended having the right side removed, possibly the whole thyroid if I was ok with that. Fella and I were both totally ok with that and then he brought up how he generally refers people to the ENT. Yes, that ENT. The one that travels down to the clinic I go to and had seen in April and the PA consulted with in December. Fella and I were polite about him, but stated we'd already dealt with him before and were told he personally do anything about it and asked if there were other options (part of why I'm so grateful for the Fella is that he is more than happy to speak up for me about stuff and support me when I'm worried about burning bridges). The endo stopped a moment and said there are other people. There's a general surgeon that's a lady if I was more comfortable with her and thankfully didn't push the issue. He said it's my neck and I definitely have a say in what goes on there. He wasn't so sure that the inflammation would ever go down. If I was this uncomfortable right now, having some or most of it removed would be a good idea. He thought that with only have removed that it might help, but thought there was still a good chance I'd be on meds anyway given how the thyroid looked and that it'd most likely quit working in the next few years anyway. So, he called the general surgeon's office and said we'd hear from them within the next few days. It wasn't an hour later and we got a call from them saying that she only does consults on Fridays and wanting to know which Friday worked for us. They had an appointment open for 9:30 which gave us time to meet with her, then head back home so Fella could make his interview. Finally some progress!
We met with the general surgeon Friday and discussed what was going on. She agreed that this definitely needed to be taken care of. What got me is that at one point she looked at me and said, "I don't think you're scared of the surgery. You seem ok with that and have mentally prepared yourself for it. You just want someone to help you and you don't feel that you're getting that. Am I right?" Boom. Dead on observation. After emotionally choking out that yeah, that was indeed the case, she explained what she'd do, what the complications could be, recovery, etc. She was confident with the surgery, but wanted to do the right lobe first to make sure nothing was damaged and then do the left lobe later. Sounded pretty reasonable to me. We set up a time 2 weeks later for surgery and were good to go! And while I wasn't excited about the ENT assisting, I was willing to bury the hatchet and move on.
Tuesday, the day before surgery-- We're at the office I work at, Fella got his job ans was supposed to start the beginning of March, and prepped to head up to the city a couple hours away since surgery was early the next morning. It's mid-morning, I'd gotten a lot done before I needed to leave and was finishing up a few things when I got a call from the surgeon. She said that she'd really been thinking about this a lot lately and the more she thought about it, the more uncomfortable with the surgery she was. She said due to the particulars of my case, she was worried that she might damage something and that was the last thing she wanted to do to me. And while she hated to tell me that and make me feel like I was being passed around, she felt it was the right thing and wanted to know if I was ok with being referred to someone that does this far more frequently than she does and specializes in it. While extremely frustrating, I did (and still do) agree that that was a good idea. I like her, but if she isn't comfortable with it, then referring me is a good idea. She asked which direction I wanted to go-- Rapid City, South Dakota, Omaha, Nebraska (figured that was a bit far), or somewhere else. I asked her to see what was in Denver, Colorado since that's about 3 hours from where I'm at and it's big enough to have a number of doctors that might handle this. Got a call a little later saying they found a lady in Denver and that they were faxing stuff over there. Her office would call within the next few days.
Well, a few days later, there was still no call. So I called the surgeon's office making the referral. Turns out the fax didn't go through, so they had to resend it. LOL. A little delay, but not bad. Heard back the next day and the office in Denver set up an appointment and wanted me to get copies of the bloodwork from the endo and fax it over. Got that taken care of and lo! while reading looking at the tests, it turns out that the antibody tests showed positive for Hashimoto's. I guess the endo figured that since he told me I had Hashimoto's before the test, that part didn't really need to be revisited. Not sure. Either way I knew and had copies of stuff. LOL. I got a copy of the ultrasound images from March 2013 and December 2013 for them and the general surgeon sent me the stuff from the biopsy to take to Denver. Whee! In this time, the Fella started work the last week in February and since he was working nights could come with to the appointment. His workplace was awesome about letting him take time off for the surgery since we let them know we had medical stuff for me when he interviewed.
March 5th and it's the day of my appointment in Denver! We found the office pretty easily (had more trouble finding where to park) and waited a bit before heading in since we were a bit early and they were on lunch. After killing a little bit of time, we went to the office and checked in. I forgot to mail the discs down, so the doc checked those out while we did paperwork, then went and sat in one of the rooms while she glanced over a few more things. The vast majority of the office was introduced (it's not very big), so we got to know most of them and could ask any of them anything we needed to. The doc came in and we discussed what she saw with all the stuff she looked over. She said it was obvious I had Hashimoto's. You could see it in the ultrasounds and didn't really need to do the antibody tests unless you wanted to have that confirmation as well. Then we discussed options--Partial or whole thyroidectomy, the pros, the cons, the maybes, the treatment options, recovery, and what she thought. A lot of what she said matched the endo, so it was good to have confirmation that one or both knew their stuff and were in agreement on it. Apparently, my nodule was tucked under my collarbone a bit which is why I was rather aware of it. It was stuck and had no way to really move with my neck when I'd turn my head. Heh. No wonder I was having troubles turning my head to the right comfortably! I opted to have the whole thyroid removed. Due to how ratty the left lobe looked, she said it was very likely I'd still have to take meds anyway and they'd still have to monitor the left lobe almost yearly to make sure it was still working, there were no nodules, etc., but then they wouldn't have to worry about damaging all the parathyroids. I only need one that works, but the more of the 4 that work, the merrier. I was sick of dealing with the whole thing, so I said to take it all. We set up a time for March 11th, then got my blood drawn for Vit D and went home.
I was originally going to add the surgery in this post, but for the sake of how long it already is I think I'll do one that's dedicated to the surgery and recovery.