First, get thee to the website of the hypoparathyroid association: http://www.hpth.org/ and check out the member forum. You will find many testimonies from people who have gone through this experience (including me). You won't feel so alone! Some live with this chronic condition, and some people are able to wean themselves from the calcitriol and most of the calcium, and their remaining parathyroids start functioning again. Either way, you can find information about treatment and coping with this condition.
Im currently sitting here crying my eyes out. Im 21 years old and recently had a complete thyroidectomy. I was diagnosed with Hashimotos thyroiditis and graves disease and they removed three of my parathyroid glands and the one that was left had stopped working. I now have severe hypocalcemia and was back in the hospital for three weeks because the calcium had dropped down to 1.3 (Supposed to be between 2.2 and 2.6) after my dr had stopped all calcium supplements. It took forever to get back up (Had a blood test the other day its at 1.8) But recently I have been suffering from a terrible chest feeling, light headedness, feels like bubbles coming up my throat and a horrible burning sensation through out my body. Ive been to the hospital and my gp and nobody knows what it is. I have been put on betablockers and a form of anti depressent to block the anxiety but I think that its made it worse. Im at my wits end because I really cant suffer this feeling anymore. I feel as if they have ruined my life. Please someone give me something positive before I actually throw myself infront of a bus =(
I have had simular situation. I had TT in December 09. I am currently on 7000mg of calcium, .5 of rocaltrol twice daily, and a super 50,000iu of vit d in addition once weekly. I take eltroxin .175 daily.
While in Hospital, I was on the calcium drip and everything also.
The day I had my worst attack of Tetny was while I was driving. It was 7 weeks post op. I had sneezed, and all my mucles contracted and would not let go. I felt as each part of my body went numb and tingly when I had difficulty breathing and my hands cramped and my face scrunched up I knew I had potential serious problems.
I could not talk, or breath as I could not expell any air. My husband had just had an angiogram done, so he could not help me. We made it safely off the highway, but it was a very scary experience.
I am now 3.5 months post op. It is up and down, and everyday is a challenge. My TT measured 7 cm. At least It was not cancer! I am aware that seizures can occur, but it is rare. I hope that you are able to regulate your med's soon! I understand how you are feeling! Best of Luck!
I had complete thyroidectomy mid-Oct. 09. Next day calcium dropped & I had tetney symptoms. I had no concern until I had what I think was a seizure 2 days later. I tried to speak and my voice was like someone with cerebral palsy. Although my thoughts were clear, words I spoke were like a child put the words together. I wanted to ask, "will I return to normal" .. instead I spoke - "I be back". My arms drew up (the tetney) then my entire body began drawing up. They had already given me calcium by IV twice prior to this day. My dr. found me this way and immediately (with much panic I might add), injected me with a calcium concentrate (can't remember which type). Its like injecting an epi-pen in someone stung by a wasp they are allergic to. Felt like fire going through me. It got very serious very fast. The symptoms lasted a while. Has anyone else had experience like this? Dr. won't admit it was a seizure, only admits to tetney. Probably fears lawsuit, not my goal. Wondering if anyone else out there has had speech involved - especially where their thoughts were not able to be expressed correctly.
I still have numbness and tingling off and on. I started out on high doses of calcium, calcitriol and magnesium to offset. Through the weeks & months I am now stable by taking 1000 mg. calcium 2x day and magnesium.
Thanks for any input that can be shared. I hope you all are recovering fully by now! Pam
I had TT on Nov 4, 2009. I was told by surgeon that parathyroids are intact. I am currently taking 16(500 mg) calcium pills, 1 calctriol, 1 vitamin D tablet per day. I am on synthroid 2 mg and synthroid 50 mcg.
I was told that I have to wait at least 3 hours before taking the calcium and synthroid. I am continuing to gain weight and if I forget to take the calcium my hands and feet start tingling. I am getting discouraged because every 2 hours having take pills. This is difficult when working and you get busy and don't remember to take the medicine. After reading some of the postings, I guess this can be permanent. Also, I have not gotten my voice back completely and by the end of the day you can barely understand me.
I had a TT 5 days ago plus a lymph node removed and the problem im having is I have so much energy I cant seem to rest,I have been cleaning and decorating my house as well as families,is it possible that I felt so bad before surgey that im now feeling normal?I also am a little swollen in the face but I wonder,is the weight gain a certain thing or does it just depend,I had gained 6 lbs in one week just before surgery so who knows...im on 50mg of thyroid meds do you think this is enough..........wow there is alot to think about here...take care to all melissa