Hello! I'm sorry you are going through this. You are not alone. Perhaps my story will be helpful: I had total thyroidectomy for a benign multinodular goiter in July '06. In my case, I went into full tetany (let me tell you, that was a wild experience) on the second day after surgery. I had three intact parathyroids and one which was "bruised" during surgery. No one knows why my parathryoids just stopped working. I was in the hospital for a week on intravenous calcium. After the IV kicked in I didn't have any more symptoms (except low levels of calcium). I gradually moved off the IV and onto calcium supplments and calcitriol. I left the hospital taking high doses of calcium, magnesium, and calcitriol daily. I was also on HCTZ (hydrochlorothiazide). I was tested regularly and my parathyroid function (PTH) was very low. Over time, I have been able to reduce the amount of calcium I take daily; currently I take 4,000mg of calcium (that is 4 tablets), .25 cacitriol, and one multivitamin a day. I am hoping to go off the calcitriol altogether and start taking Vitamin D if my next calcium test is still in the low normal range. There is another person who visits this forum with symptoms very much like yours. She and I have been comparing notes and treatment, and we have both made progress. The key is to monitor your own progression very closely, with frequent calcium and PTH tests. Some doctors will tell you that if the parathyroids don't bounce back within 6 months, they never will. This remains to be seen. In effect, the calcitriol does the work of the parathyroids so they don't have to. The key is to keep one's calcium level at low normal (8.7-8.9 range) and give the parathyroids a chance to work. At least that's the theory. It seems like uncharted territory because this is so rare. But I do believe you will be able to control your calcium over time. My endo doctor is Bharat Raman in Madison, Wisconsin, in case your doctor have any questions. Good luck and please keep us posted about your recovery!!!!
Hey there and I SOOOO share your frustration. I am the gal that devushka talked about. She and I have been corresponding over this. My story is just like yours only I had mine done last October. Went into tetany the second night and by the 5th day they had me off the IV but it began to drop again. By the 7th day I looked at the endo and almost insisted he get me out of the hospital cause I was going crazy. I did leave, to his reluctance, have been battling this ever since. Devushka and I both feel that too much medication is slowing our bodies down and preventing our PTH from coming back. I had one removed, one relocated and the other two weren't touched. 2 months ago my Calcium reading made a big jump to 8.9 and the endo didn't want any other blood work till December, so we'll see. Devushka is my "evidence" cause her Calcium is finally coming around and she is weaning off the Calcitriol. I completely know what you are going through and just hang in there. We are a rare breed (whoopee) and I truly don't think they know how to handle us. I said that we should start our own club. We will serve ice cream, milk, leafy green vegetables, etc. You can reach me at my regular email, ***@**** and perhaps we can exchange phone numbers so you can really vent. Hang in there..
Just noticed that they don't let the email address go through. Oh well, perhaps someone knows how to do this. One other strange thing with me is that my PTH level has always come back as well withing the normal limits. so I don't know what the problem is/was.
My niece had thyroid cancer surgery and developed full blown tetany. She was in the hospital for 30 days and is now in a rehab to try to recover walking etc. She needs a walker .She is only 28. She is so scared and because the rehab has no clue how to handle tetany she is not getting proper testing. In one week she has been rushed to ER twice. She is declining. Please, can anyone share with me everything we should be doing...what she should be taking ... What she should and should not be eating ... Anyway she can test on her own or what symptoms to look for when you know what to pop. I think they have her on tums. Any and all info will be greatly appreciated. I have Lupus and ME and fibro...so I know your not doctors lol but I get my best info from fellow sufferers. Thank you
This is a very old thread and the previous posters are no longer active on this forum. You should contact your niece's doctor and have her/him provide very specific instructions for the staff at the rehab center in order to make sure your niece gets the proper care, including the vitamins/minerals in the quantities she needs. That's very important...