low calcium after Total Thyroidectomy

[mahnie]

I would appreciate hearing other's experiences with low calcium after TT (4 days ago in my case)for a multinodular goiter and how long, if ever, these levels returned to normal.  My largest nodule was big (5 cm) so I am worried that some or all of the parathyroids were removed at the same time.  I see the surgeon in 5 days. Is it a reasonable question to ask if she saw any parathyroid glands and also if any were seen in the tissue removed?. I know that there can be damage to the parathyroids as well as removal.



If I am delayed taking the calcium pill the tingling in my fingers starts and my lips become numb so there doesn't seem to be any improvement post surgery.  Post surgery my ionized calcium levels were not below 1 though and I was told that was better than being below 1! Thanks for any help.

[utahmomma]

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.

[mahnie]

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?

[utahmomma]

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.

[mahnie]

Thanks Utahmomma.



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.

[utahmomma]

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???

[hazelhurst]

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!

[utahmomma]

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