# Post surgery medical mystery, please help



## SuzieSocialWorker (Jul 9, 2013)

Hi all, I write this from the ICU. my TT on 10/31 went perfectly, pain is minimal, and my incision looks great. However, my Calcium plummeted and I ended up with full blown hypocalcemia (nightmare experience). This was after I had IV and oral Calcium/Rocaltrol for 2 days in the hospital but was vomiting some of it up. It's now Monday and I have felt better since they put in PICC line and shot me up with Calcium (I'll describe this later as apparently they only use this when people are coding and it was very odd). I've been on the IV and pills, no nausea, and the plan is to lower the IV and get me on pills only, but it's not going as great as I'd like as my numbers aren't staying up despite being on 25 Calcium pills a day.. I'm stumping the doctors.

After surgery, my parathyroids tested active, but since then including today they are undetectable. No one can make promises, but 2 ENTs and 2 Endos all feel optimistic they will "wake up." It's been 4 days and they're either sleeping or done, and I don't know what to think. My thyroid was very inflamed and sticky, and the parathyroids had to be peeled off with a lot of work. I did get my bowels moving which one Endo thought was affecting Calcium absorption. I'm eating and drinking normally, only taking Tylenol PRN. So I need to know what you all think.

This board is what educated me up to this point and helped me take the lead on my health, and I am so grateful. I have great doctors here but they haven't had a case like me. I'm healthy and feel good, I'm a joke on the ICU restlessly walking around the room. I just want to go home and never want to feel hypocalcemia again. Does anyone have insight? Im trying to have patience but I thought I'd be getting ready to go back to work and here I am. Anyone have suggestions?


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## joplin1975 (Jul 21, 2011)

Oh no!!!  I'm so sorry to hear this!

I don't have any insight at all, just wanted you to know I was thinking about you and am hoping things get straightened out ASAP.


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## Ginav (Jun 7, 2013)

I don't have any experience either with parathyroid. It sounds like you are in the right place. However, just having a TT myself I have never been so happy to make it home so I can only imagine how you must feel. I'm sure they will figure it out and hopefully, someone here can chime in to give you better he. Just wAnted you to know you Are not alone and to hang in there. All of this is such a journey, one I never thought I would have to take and we never know where it may lead us! 
Take care and keep us up to date on your progress!
Gina


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## SuzieSocialWorker (Jul 9, 2013)

thanks for the support. I'm home now, my levels are going up and down but I feel much better. Still no parathyroid function, but I'm taking much less calcium now.

Sounds like people haven't had this experience much. I guess it's kind of rare but I don't wish it on anyone.


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## Endocrine_Surgeon (Oct 31, 2013)

Fortunately this isn't very common, but that doesn't help you. It isn't a "mystery" though - it is pretty clear what is happening. Your parathyroids aren't functioning. This can occur if they are all removed or if they are devascularized, or the blood supply to them is cut off.

Did the surgeon reimplant any of your parathyroids? When they are reimplanted, they usually don't function right away, but will usually start functioning at some point.

When you get the pathology report back, it should say whether the pathologist found any parathyroids in the specimen. If there is a parathyroid in the specimen, don't lose hope, since you really only need one (or even half of one!) to function. Most people have four parathyroids, so as long as the specimen doesn't have all four, you should expect function to return.

There are people who have no parathyroid function after this operation, and take lifelong Vitamin D and calcium. They are able to manage it. You aren't alone.


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## SuzieSocialWorker (Jul 9, 2013)

Thanks for the response! I guess the mystery part was that I was taking 25 Calcium pills a day with Rocaltrol, plus the IV, and my numbers still dropped to the point I was given the Calcium Chloride through a PICC line which was very surreal. For whatever reason I wasn't absorbing it but after a few days it seems I was better able to, and my numbers have gone high and lower.

The path report said nothing about parathyroid tissue. My surgeon said they were so stuck to my thyroid he had to actually go "through" one parathyroid to detach it. If the blood supply was affected, could it permanently disable all 4? My latest number shot up to 11.1 but with still no PTH detectable, so I'm backed down to a manageable dose but I look forward to the day where every tingle or twinge doesn't send me down the anxiety black hole.

I have seen typical timeframes for parathyroid recovery stated as 2-3 days, 4-6 weeks, or 4-6 months so it seems to vary, I will try to have patience.


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## Endocrine_Surgeon (Oct 31, 2013)

Each side has its own blood supply, but if it is a difficult thyroid, it is likely difficulty on both sides, and so all of the parathyroids can be injured. I know it is frustrating. You have to give it time, and there isn't a good number for how many weeks/months it will take (even if someone gives you an average number, it is just an average; it might be longer or shorter for you).


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## SuzieSocialWorker (Jul 9, 2013)

Thank you so much for the more detailed information. My biggest regret is not having a pen and paper to record all questions and answers. I was already in a daze, and with multiple doctors talking I can't remember half of it.

I have great news - my calcium is perfect and my parathyroids woke up! They are at 23, and I'm ready to throw them a party. I'll continue monitoring and adjusting my dose, but overall I'm healing. Still tired and weak, but that will get better.

This has been a lesson in patience, advocacy, expectations, trust, faith, love, and support. As bad as it sucked, I'm grateful for these lessons and I'm confident my health will improve now that my sick thyroid is resting in peace.

My doctors, nurses, food staff, and everyone at the hospital were wonderful and I'd be glad to make a recommendation to others in the Ohio/Indiana/Kentucky area needing an Endo, ENT, or hospital.


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## Ginav (Jun 7, 2013)

That is such great news!


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## gymbomom (Oct 11, 2013)

Great news! I had one nodule that was stuck to one of my parathyroid glands and I lost half of it when they took it.

Glad you are on the mend and it sounded like it was a nightmare experience!!!


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## jenny v (May 6, 2012)

Yay! I'm glad your "Sleeping Beauty" parathyroids decided to wake back up!


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## Ginav (Jun 7, 2013)

I just received the pathology report back from my surgery on Nov 1 and two of my parathyroids went along with my thyroid. The surgeon didn't know it at the time of the surgery, he thought all was still there! They aren't always sure are they?


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## Endocrine_Surgeon (Oct 31, 2013)

Ginav, I'm sorry to hear that. No, we're not always sure. The parathyroids are often "stuck" to the thyroid and we may not notice them. Parathyroids are usually tiny things. The good news is, you should still have two functioning parathyroids.


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## jenny v (May 6, 2012)

Ginav, I had one parathyroid stuck to the right side of my thyroid that didn't get discovered until pathology, so it does happen. Luckily, we've both got several left and it shouldn't cause us any issues.


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## Ginav (Jun 7, 2013)

Yes, I ' m grateful to have two left. I was told that we really only need to have one in order to produce the calcium we need. So it is nice to know I have two. It surprised me because the surgeon was very confident that they were all intact and I am in no way upset with the surgeon I feel he did a great job! I would recommend him any day of the week. I think most of us go into this knowing that it is not risk free. Thanks for your responses!

SuzieSocialWorker - I hope you are resting and healing!


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## SuzieSocialWorker (Jul 9, 2013)

Wow that is scary, but explains why my endo kind of second guessed my ENT who said they were all 4 left in there, which was confirmed by pathology. I can't imagine taking out a sick and sticky thyroid and taking care of those tiny glands glued to it.

So my Calcium is steady at 8.5 with my supplement of 6 calcium carbonate 1250(500)mg and 2 calcitriol (0.5mg) through the day. Going into surgery I was already low at 8.0 so I'm wondering how this will play out. I don't mind taking supplements, but hoping I can decrease at some point. Lesson learned that my body is just slow to adjust. I feel the same overall as before surgery, which is pretty tired, achey hands, and tmj is worse. But all in good time 

I see my Endo next week for an appt I had already scheduled. Is this too soon to test my TSH, Free T3/4? It'll be almost 3 weeks post-op and I'm on 100mcg Synthroid.


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## SuzieSocialWorker (Jul 9, 2013)

Let me add, because so many people here are talking about trusting your instinct:

The day after being released, I was told to do blood work in two days. Well my anxiety caused me to insist on doing it a day early, and guess what? I was way high (which long-term can cause kidney stones). So high that I stopped all supplements for 24 hours and then was still high. So you know what, insist on what you feel is right. I blew my "out of pocket max" out of the water already so screw it, I know my body and will be in charge of it and if I wanted labs done every day I'm gonna do it until I'm healthy. Doctors are busy and human so it's up to each of us to be responsible. A lab draw sure is cheaper than an ER visit.


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