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Sue, my pleasure. I remember those early days. The second I read your post I thought to myself….sounds like my little calcium episode! Feeling flu-like in general WITH clenching, well, that’s a pretty specific memory. I was clenching at a level of 8 (which isn’t horrifically low, but tell my body that!). I might also mention that while we were trying to get my calcium up to a safer level I also began to feel like I had kidney pain or something in my lower back. Spent a full night on the internet trying to figure out which med was killing my kidneys! LOL (Although it wasn’t too funny then. Cried like a baby due to the fear.) A couple of months after the whole thing was over, I read that it’s just one more symptom one may see while working with calcium levels thru supplementation. I only mention that part as a “just in case”…I think most people with sleepy parathyroids don’t complain of it, I was just lucky that way. But if I can save you even one sleepless night later…
If your doc decides to test your calcium level and it turns out to be low, it comes up pretty quickly with the RIGHT form/amount of calcium for you. So PLEASE don’t worry! TUMS work for most people but did nothing for me. Also, while they give most of us TUMS post-op for a period of time to head off any issues – if your parathyroids are overly sluggish it may not be enough to take it just 2 or 3 times a day. Your doctor will advise you if you need to increase it based on labs. I would not suggest doing that on your own though. I’m sure overly high calcium isn’t good either. Labs, labs and more labs. Oh my!
In case this is your issue, I’ll also go ahead a mention a word about timing (so you can ask your doc about it if they tell you that your calcium is low). When they increased me to 5 or 6 times per day, I’d spread them out during my waking hours. And since it isn’t supposed to be taken within 4 hours of Synthroid, I was left with a large window without calcium. And man would I feel it. Something I had to really work with. I also think that because my calcium was out of whack that my magnesium fell out of whack too. Maybe contributing to the cramps and weakness. That’s just a guess based on reading that I’ve done after the fact.
Like I mentioned earlier, it’s easy to figure out with a blood test and a talk with your doc. It’s a known & not completely uncommon (temporary, want to stress that!) side effect of thyroid surgery for some of the population. Which is why they put the majority of patients on TUMS post-op. Sometimes your body just needs more to get you through these initial few weeks – if you have extra sleepy parathyroids like I did.
I also saw something about wanting to clear your throat and being a little shy about it, a little apprehensive. Remember those SSKI drops? Well, they really thin all secretions – so that coupled with having neck surgery and a breathing tube increased my activity in that regard but it doesn’t seem like it lasted more than a couple of weeks or so (and especially occurred w/ lying down). I just coughed carefully and sometimes propped a soft pillow against my neck just to make myself feel a little more secure (no science there!). Tell you this though…for months afterward I had the clearest sinuses ever!!! Those SSKI drops really cleared me out in a way that I have never been cleared before. And I mean way down deep in my sinuses and lungs. Still feels great actually. An additional POSITIVE side effect!!
Also saw something about steri strips and all that. I haven’t read through all your responses (glad to see that you’re getting so many!!!), so I may be repeating things already mentioned to you. My surgeon told me that I had internal sutures that were actually holding the whole thing together & that the steri strips were mostly there to take pressure off the sutures which decreases scarring & bumpiness & aids in healing. Told me to take showers & to do what others have mentioned…don’t direct the water stream directly onto them, but he said water rolling off of them from your face is fine. But he said if they fall off, nothing is going to open up! He wanted them to stay on for about 10 days to give the neck sutures time to do their thing. In the end it really sounded to me like the strips were there to speed up healing and to improve the cosmetic result – while providing a little extra support to the incision during the early days. It didn’t sound to me like they were actually what was holding me together. And despite getting them wet with indirect shower water every day, mine still hadn’t fallen off at the 10 day mark. Of course, all these surgeons are like artists (I’m another one w/ a barely visible scar that only I seem to be able to see) and all have their own way of putting us back together & getting us through recovery. Definitely listen to yours. Mine may have taken a different artistic approach!
I’m guessing that you’ve already resolved all your concerns on that front by now and that I’ve been redundant. If so, sorry…but hey, you’ve got a fair amount of free time this weekend, right?!?!
Seriously, it sounds like you’re doing really well & that your surgeon did a great job too!
Christina
(Sorry I got long-winded here. Yikes, huh!)Sue ~ I can’t recall all the details, but I do recall disliking SSKI. Thankfully it’s only needed for 1 week, right? Here’s what I do remember: Heart palpitations, insomnia, huge loss in appetite, terrible taste in my mouth, and swelling (especially in my face). I tend not to tolerate any new med well tho.
My symptoms reversed themselves quickly once I stopped the drops – as in nearly immediately after surgery.
Wondering (& I know you’ve already considered this) – since the insomnia started a couple days before the SSKI, maybe just a good old case of pre-op jitters (or excitement even
)? It would certainly be nice if all these physicians would get on the same page with each other…and even nicer if it was an evidence-based page!
Suzzanne ~ I also had very painful “aches” & weakness while on Tapazole (& beta blockers) despite “normal” lab levels. And anxiety off the charts!!! Never knew what to attribute all that to. My doc at the time said it was all unrelated to my meds. (I had an irritating endo back then!!!) In fact, I was one of those folks that felt worse during anti-thyroid drug treatment than I did before (except for the tremors and racing heart – those were gone). But I’ve heard people say that if you stick with it, your body adjusts and they go away. I didn’t stick with it (only took them for a couple of months)…too weak mentally to deal with it all I guess. So I jumped over to a definitive treatment (especially since in my case they were saying that I was not a likely remission candidate – had Graves’ for over a decade, 51 years old, had large nodules, etc). But, I think that I’ve heard many talk about how they toughed it out and feel totally fine on anti-thyroid meds once they grew accustomed to them & found their sweet spot on them.
There was some talk that part of it may have had to do with low Vitamin D, calcium, magnesium, iron and B12 levels. Things I’ve since addressed.
Isn’t Graves’ grand?
P.S. Got to be said…I love your humor Boomer!!! Wish you’d been around when I was at my sickest!!!
Karenz516 ~ Sounds like you have a wonderful endo. I still haven’t found one I like.
Mine made me feel crazy when I didn’t immediately feel better after the tapazole brought my labs into normal range. Wish I’d had yours! Cuz the doc is so right – we start off very sick. We don’t immediately feel “well” the second our labs are normal. In my opinion, that’s when the true healing begins – the day after our labs become normal. And then, only if they stay consistent. So I truly believe the wellness clock starts there – and then it’s just a matter of time (and vigilance!). Sounds like your doc does too.I’m on the exact same supplements you are – and I think they are a huge part of my feeling better, of healing the damage done by hyperthyroidism and that racing metabolism. It’s all a bit gradual tho, isn’t it?
Christina
Moonbeam ~ LOVE that screen name!!! And welcome!
I’ve never experienced a rapid change in T4 (that I know of), but anything’s possible in Graves’ it seems. Does make me wonder now if that was something that was happening over the years tho. I didn’t know until after the fact that I actually had Graves’s for over a decade. Sometimes I was “fine” and sometimes, like when I was under stress, I’d have all kinds of crazy symptoms, but would eventually be “fine” again. So now I wonder if stress was raising my T4 & perhaps exacerbating my symptoms and I just didn’t know it. Hmmm. Interesting thought.
The eye thing. I had similar symptoms. An ache in my left eye. Sore and scratchy. Sensitive to light. Swelling. Large bag underneath. Dry eyes. My primary care, ophthalmologist, and endo all said that it wasn’t Graves’. My surgeon took one look and thought it might be. Referred me to a neuro ophthalmologist who said it was. There was nothing to do for it except wear sunglasses outside and take eye drops without preservatives. Helped with the soreness and dryness, but not with the swelling.
But here’s what I’ve noticed. If my thyroid levels are abnormal – doesn’t matter whether it’s hypo or hyper – my eyes get worse. Now that my thyroid is out and my levels are normal, my eye is way better. The eye specialist says that my case is very minor and to give it a year of normal levels…that I may see a complete remission. Hoping so. But so far the swelling is already way down, and the soreness is completely gone. Still a teeny bit dry, but eye drops are my new best friend. And the eye bag is so much smaller. Whew! So there was nothing they could do – but it felt better to know that someone was monitoring things and had a baseline.
As far as doing things to help yourself along while you go through medical treatment…here’s what worked for me:
* Avoid stress, although the diagnosis and treatments are stressful in their own right! But avoid outside stressors whenever possible. At least for now.
* Eat as healthy as you can, sleep as best you can. Listen to your body. And keep a log. It can help your doctor with dosing decisions & can help you understand what exacerbates your situation and what helps it.
* Learn ALL you can, but stick to rational sites and people. (This is the only place that I found that qualified, and it helped me more with the emotional aspects than any doctor I’ve seen to date).
* Don’t be afraid to question your doctors and to change doctors if you later find that one of yours isn’t a good fit for you.
* And BELIEVE. That you will get better. That the anxiety will decrease. That there is life after a Graves’ diagnosis.
I am 6 months post official diagnosis, 4 1/2 months post-TT, 3 1/2 weeks with normal and stable thyroid levels & I am here to say that I feel better than I did before diagnosis. Mentally, physically & emotionally!! But also know that there are no overnight fixes, some tough decisions along the way. It’s a bit of a journey. And it’s months, not weeks. Once I realized that and learned to take it one step at a time I began to mark my recovery in baby steps. Like celebrating the day I went from 4 prescriptions to 1!! Little stuff. When I say months, I don’t mean that there was no improvement along the way & it all felt like you do today. (Don’t want to panic you!) Truth is, I felt better at 1 month than I did at diagnosis, much better at month 2 than month 1, etc. And suddenly, I felt great!
I wish you well…and kudos for finding this forum so quickly. It’s an amazing place full of amazing people!
Gee, I’m long-winded today.
Sorry about that.Christina
Just saw Sue’s post & agree with her thoughts & I too am really worried about adding stress on at a time when you really don’t need it. I also don’t want to second-guess your care too much since I’m not a doctor and don’t have all the details either. But I am a patient who’s been through TT & had a great outcome. So weighing all that with wanting to make sure that you have all the information you need to get the best outcome possible…I felt compelled to speak up.
The only thing that I’d add to Sue’s comments, is that for a thyroid surgery, ENTs are great too. Most people specializing in high-volume surgery of the thyroid, parathyroid, etc. are either endo or ENT surgeons. So don’t worry any if yours is an ENT, as long as he does a lot of these. But he should be able to tell you his complication rates. The good ones don’t mind the question. In fact, they love it! Mine was an ENT, does nothing but thyroids, parathyroids, etc (is considered one of the tops in the U.S., affiliated with a teaching hospital, yada yada)…and loves bragging on the number of these he does & his nearly non-existent rate of complication!!
You are the one who will live with the outcome…not the doctor! So don’t be shy!!! Sometimes easier to say than to do. I know.
