I ended up losing one parathyroid during my TT. It took a few days post-op (and taking calcium supplements) for the tingling and cramps to go away. My endo told me to stay on calcium/Vitamin D/magnesium/zinc supplements the rest of my life. Besides, I don't want the calcium getting sucked out of my bones.
The thing my family found really helped post-op was to take Viactive calcium. They are soft chews and come in chocolate (and other flavors). They are much easier than swallowing pills right now. We kind of just ate them like candy. :-)
Now we all take a pill form of calcium (and other minerals).
Good luck - even my sisters who didn't lose parathyroids had the same problems. Those little things are touchy and don't like to be disturbed.
Thanks for this reassurance. I am hoping not to have to keep up the supplements but it nice to know that it is not too onerous for your family. Did your doctor come out directly and say that they had taken out some of your parathyroids?
My surgeon told me when she checked on me the next morning. She said my thyroid was so "sticky" and completely encompassing the parathyroid she couldn't save it but was able to leave its three friends in there.
My entire family is just resigned to the fact we will be taking hands full of pills the rest of our lives. :-) Calcium is no big deal.
I will report back on whether I need to take Calcium for life that is once I know that the thyroid was not malignant. No real reason it might be except you never know and I worked with X-Rays in the '60s in a scientific lab when I am sure we never knew to take any precautions.
I remember when I was a kid (late 60's) some of the shoe stores had x-ray machines you could put your foot into to see how your foot fit. Wild.
I've had many doctors I have all the symptoms of a "down-winder" except I'm too young (and I'm the oldest of five - four with thyroid cancer). There *were* studies going on here (Utah) to research thyroid cancers in "next generation" people who may have been exposed through ground soil, water, etc. Surprise - the funding mysteriously was pulled. :-(
It would be nice if we could get definitive answers as to the "why" of our problems but it seems we are just left to deal with the consequences.
So will they have the final pathology results for you tomorrow???
I had a total thyroidectomy last July, and a severe case of low calcium. (By the way, it's not at all unreasonable to ask about the parathyroids--my surgeon told me one of the parathyroids was "bruised" during surgery, and that he saw two others intact (presumably a fourth was in there somewhere!). My calcium levels were low after surgery, and I had a seizure (rare, unexpected at my level which was around 6.5; total body cramp--I was paralyzed!), which lasted a few hours. It was frightening, but the cure was simple: pump calcium through the I.V. I had to stay for a week--on a heart monitor, because the heart is a muscle--in the hospital until my calcium was stable. I was taking massive doses of calcium upon release, 16 pills a day (at 500 mg a pill), in addition to magnesium, vitamin D (calcitriol) and hydrochlorothiazide. This combination of drugs can lower your potassium, so be sure to check that as well at some point. I think the test is part of the normal "panel" they do. Gradually, in consultation with the doctor and after many blood tests, I have decreased the dosage. My parathyroids are kicking in again. Four months after surgery, I am down to 8 pills a day. Next week I'm going to stop the hydrochlorothiazide, then hopefully the calcitriol, and so on. I hope to get down to a reasonable daily dose of calcium (I'd be quite happy with 2 pills). The trick is to carefully monitor the calcium and parathyroid hormone levels. Good luck!
Holy cow! Okay, you win the worst parathyroid experience I've heard of! I did have to have calcium in my IV as did one of my sisters but I was released the next day (less than 24 hour stay) and my sister was in about 36 hours (couldn't stop vomiting from the morphine).
My nurses and doctors were watching us all closely for thyroid storm but the first of us who had calcium drops was pretty much a surprise to them. After about the third or fourth of the family they became really adept at keeping close tabs on the calcium levels too.
Note to everyone: let someone know they need to check your calcium levels ASAP if you start to experience tingling or cramping (especially in the legs). My family started smuggling in Viactive Calcium Chews for all the surgeries but I'm sure there would be a few medical professionals who wouldn't approve.
I just had my week post-TT followup and was pleased to hear that my large goiter was benign as was expected but you never know. The surgeon also said to stop taking the calcium and that when I go back in 6 weeks (after synthroid) with my thyroid tests she does not need to see any calcium tests (I asked). I then asked if she saw my parathyroids during the surgery or whether any were trapped in the thyroid. She said that part of one was and did not have her surgical notes yet in my file. She went on to explain that in 80% of the thyroidectomy she does (400 a year) you can see 2 of the parathyroids attached to the thyroid and you just push them aside and if they get mangled reimplant them. She also said that often they are hidden. My lips seem slightly numb but that may be imagination now I am thinking of it but definitely no tingling so I am hoping that I have been lucky. What might be interesting for others is that she said that while she first thought it was something the drug companies were pushing she had seen remarkable results using Scarsolution by Neosporin used on thyroid scars. She thought it made 6 week scars look like 6 month scars. It is expensive but I am going to try it.
I just had a TT on 11/21. Had rock solid calcium levels after surgery up to and including discharge 24 hours later. Thanksgiving day night I ended back in the ER due to severe tingling in the hands, arms and upper lip. Sure enough my calcium plumeted to 7.0 from the orginal discharge of 8.9. I ended up staying in two more days until the IV calcium and later pill form built up enough to get me back to 8.6. I have had two subsequent blood tests and still at that level, but only due to 6 calcium pills a day and a rocotrol. My doctor includes a search for parathyroid glands in the biopsy. In my case none were found. It's unusal to plumet that far past surgery but he thinks perhaps a blood clot formed somewhere around the main flow to the para's and perhaps they will kick back in soon. My problem is that I have lost a lot of volume and have a raspy voice. Everyone says it could take up to 3-4 weeks for that to come back. Has anyone out there had the same problem with the voice after surgery and is that time frame reasonable to expect?
My family has had 6 total thyroidectomies in the past 3 years. Only one out of six had raspy voice after and it took about 6-9 months for her voice to come back. She said Chloroseptic throat spray helped a bit.
I'm 34 years old and I had a total thyroidectomy 2 years ago. I have severe problems with my calcium and Vit. D levels after my surgery. I spent a week in the hospital after going into calcium shock 5 hours after surgery. I take 50,000 UI 3X week and 2400-3000 mg of calcium a day plus 200 UI D w/ calcium. I still have tingles every day in my face, hands,head etc. I have my levels tested reg. but each time it's at 8.5 . My DR. ups my intake but my next appt. I'm @ 8.5 again. My body is needing more and more and I'm still tingling what is the long term affects from the intake of such a high dose of supplements. I would also like to mention the nausea,dizziness, muscle aches and headaches. I am told my my thyroid levels are ok I currently take 175 mcg. of synthroid.
Just checked the thread. I hope you are doing better! Have your PTH levels changed at all? In other words, is there any indication that your parathyroids are starting to do their job again? My calcium levels are still around 8.9, but over 5 months I've managed to decrease by half the amount of calcium I take. Hang in there!