CancerCompass message board discussion started by SusanLV on 4/6/2008 http://www.cancercompass.com/message-board/message/all,22757,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Had half of thyroid removed in May and then found cancer so had the other half removed in July.  Had RAI (150) in September.  Have had tongue/mouth burning pain since then.  It is so uncomfortable and depressing,.Getting run around from doctors.  Just had blood test that showed low blood calcium, which I guess with the other symptoms, could mean that the parathyroid glands were destroyed during surgery or RAI. Anyone else experiencing anything like this? If so, who and what has helped?  Going to oncologist tomorrow. Any info wo9uld be great. Susan SusanLV Sun, 06 Apr 2008 00:00:00 GMT I experienced low calcium one day following release from the hospital following my surgery in August 06.  I was readmitted to the hospital immediately because I dropped so low.  I experienced tingling from head to toe and my hands and feet drew up.  Before then I didn't realize the important job the parathyroids do to keep the calcium levels in balance for the bones, muscles and nervous system.  Once built up and released from the hospital I was on prescription grade Vitamin D (calcitriol) and large amounts of calcium.  The calcitriol did what my parathyroids were supposed to be doing.  My surgeon assured me that he did not remove my parathyroid glands and that sometimes the glands are stunted by having to reestablish blood supply once the thyroid gland is removed.  This was monitored very closely by my endocrinoligist.  My endo slowly took me off the calcitriol in hopes of stimulating the parathyroids to work.  After a year, they began to work and I am no longer on the calcitriol but continue to take calcium as that is important when on long term thyroid hormone replacement medication.  I did research on the internet for hypoparathyroidism and didn't find alot of information as it is a very rare condition.  One thing to keep in mind is that when you are on the calcitriol it will suppress the glands if they are trying to work so the only way to tell if they are going to kick in is to stop taking the medication which is scary because of the symptoms when your calcium goes to low.  I'm saying all this to say follow through and make sure they are checking all the different calcium levels.  The 3 tests they did were:  calcium, pth intact and ionized calcium.  Good luck and feel free to post any other questions.  Terrie Terriet Sun, 06 Apr 2008 00:00:00 GMT I agree with the recommendations of the other responder.  I too suffered such low blood calcium levels after thyroid removal and one parathyroid gland removed that it sent me back to the ER just hours after being released from surgery.  My surgery was in August and I still have episodic symptoms of low blood calcium levels, tingling of my feet and sometimes hands.  I was told to take at least 1500 mg of calcium daily, but as your body only absorbs about 500 at any one time, to do it over the course of the day (3x daily).  I also take about 800 to 1000 Vit. D, as your body needs Vit. D to absorb the calcium.  Being on that my blood calcium was considered too low so my endo prescribed Calcitriol 2.5 mcg (or mg?) daily.  My level only reached low normal so my Calcitriol was increased to twice daily and I'm still having tingling of my feet even as I type this.  I go back on the 15th of this month.  When I was first released after surgery and after returning home from the ER where they administered IV calcium, I was told to pop a calcium tablet at any sign of it dropping (tingling), that there was little to no chance of me suffering an overdose of calcium.  You may or may not have lost any parathyroid glands.  If you read your path report it would tell you.  As in my case I lost one of four and over 8 months later still deal with the side effects.  I was glad to hear that there is a chance that eventually the remaining parathyroid glands may kick in and do there part.  Monitoring your blood levels is important and you should be on a similar prescription regimen.  Leemg Sun, 06 Apr 2008 00:00:00 GMT HiThanks for the info.  The path report from the first surgery doesn't mention loss of parathyroid.  I don't have the second surgery report.  Maybe something hapened from RAI???  I have really been suffering for 6 months and feel that they should have done blood work before this week.  An oral surgeon ordered the test. I have just been getting a run around.  Calcium is at 7.4 and I am really feeling the effects.  Susan SusanLV Sun, 06 Apr 2008 00:00:00 GMT  I had my surgery on 3/5/08.  My calcium was perfect in the hospital.  The next week my blood test came up with low calcium.  My endo put me on Viactiv and Tums; 1200mg/day.  All blood tests since have been perfect.  Both have vitamin D in them and taste good.  I hope it stays like that! dinparadise Mon, 07 Apr 2008 00:00:00 GMT Susan,That is terrible that your thyroid doctors are ignoring this problem.  Every endocrinologist and head and neck surgeon who removes thyroids knows about the possibility of developing low blood calcium after thyroid removal.  It is not a rare occurrence but a rather frequent one.  Just stunning the parathyroid glands in surgery can cause the problem.  Dropping below 7.0 is actually dangerous.  It can cause heart arrythemias (sp?),  stroke and numerous other side effects that is why I was told to go to the ER when I started having numbness and tingling of my extremities and around my mouth.  My level had dropped to 7.00 when I was in the hospital but increased to low 8's when released but dropped again and was given IV calcium at the ER.  About a month after surgery, I got a call from my endo that my levels on my previous test were lower than he would like so that is when my Calcitriol was increased.  You definitely should be monitored until it is back in normal range and for a period thereafter until it stays within normal range. You have to be your own advocate.  I was angry at my endo, after calling me and asking me if I was having symptoms and faxing a script to have blood drawn ASAP, there office left me in a lurge. So I just kept popping calciums tablets.  When I had my appointment, he had students and residents in training in the office on that day, and I blasted him for calling and telling me things could get worse quickly and not getting back to me with my results.  He was apologetic all over the place.  Of course, he claimed it wasn't his fault but the office and agreed it should never have happened nor would it happen again.  My point is now he is right on top of things so is my surgeon.  They know me now.  Find a team that sees you as a person and not just another patient in the assembly line.  It is too easy to become just another patient today with the numbers that pass through their office.  Good luck! Leemg Mon, 07 Apr 2008 00:00:00 GMT I too encourage you to get someone's attention on this as it is not something to mess around with.  That level is very low.  After I was released from the hospital the 2nd time after getting my calcium levels up through IV, I was told if I had any of the low calcium symptoms again to eat tums and to get to the emergency room.  They explained that the calcium in the tums would get in to your system the quickest.  Both my surgeon and endocrinologist explained the seriousness of this side effect.  If you begin experiencing the side effects mentioned in the various postings and you can't get your physician to respond, I would encourage you to go to the emergency room and take your blood test results along with information on your surgery with you.  The emergency room I went to at the hospital where my surgery was done was very knowledgeable and I can't tell you how thankful I was for that IV of calcium and to drink the nasty tasting potassium.  Again, the side effects are tingling of the hands or feet or head or mouth or the drawing of the hands and feet like you've got a muscle spasm that causes your toes or fingers to draw together.  My lips and face actually started drawing up and I had difficulty speaking. Good luck and I hope your physicians listen. I took 50 mg of calcitriol a day along with1800 mg of calcium a day for many months and then went down to 25 mg of calcitriol and 1800 mg of calcium for many months and then we started going every other day on the calcitriol just slowly weaning me off of that.  It took a year but as I said the parathyroids are working now! Terriet Mon, 07 Apr 2008 00:00:00 GMT Hi Thanks for the info.I went to the oncologist today and he ran blood work and the calcium was normal, does that mean it is not hypoparathyroid problems?  The first blood test was fasting, todays was not. Any info on this???? SusanLV Mon, 07 Apr 2008 00:00:00 GMT  On 4/6/2008 SusanLV wrote:Had half of thyroid removed in May and then found cancer so had the other half removed in July.  Had RAI (150) in September.  Have had tongue/mouth burning pain since then.  It is so uncomfortable and depressing,.Getting run around from doctors.  Just had blood test that showed low blood calcium, which I guess with the other symptoms, could mean that the parathyroid glands were destroyed during surgery or RAI. Anyone else experiencing anything like this? If so, who and what has helped?  Going to oncologist tomorrow. Any info wo9uld be great. SusanWhat did the oncologist tell you?  I went through the low-calcium ordeal and even had my fingers and hands draw up, heart thumping--the whole shebang.  Even experienced salivary glands swelling.  Parathyroid glands recovered from the trauma of the surgery, salivary glands are much better (I have trouble when I eat dry foods).  I'm on the diet to prepare for RAI and scans.  Good luck.  YaYaTara Wed, 16 Apr 2008 00:00:00 GMT Thank you for your response. I was diagnosed with thyroid cancer on 12/25/08 and had surgery a month later. Recently I had been having the numbness and tingling in my hands and feet. My ENT was telling me it was not related to my thyroid surgery, I knew it had to be and was told from a good friend that I should try tums, I bought some today and pray it works. My doctor has been telling me that my calcium levels were fine, but after reading all these responses, I am having second thoughts and am starting to believe it is related to my calcium levels. I have had my synthroid meds decreased from 125 mcg to 100 and now to 75mcg and hoping this will help also. legal4ever Fri, 08 Aug 2008 00:00:00 GMT