You are not alone. I had the same thing after thryoid/parathryoid surgery. My remaining parathryoids didn't have to get transplanted, though I have read of others like you who did have that.
My parathyroids did eventually climb back to normal, but it's been a slow ride. I'm going on 18 mnths and am now down to taking just over the average amount of calcium supplements. And like you, I had to be rehospitalized after surgery and put on IVs.
From what I've gathered they usually do start working, but occasionally that doesn't happen. If it doesn't happen a lifelong regimen of extra calcium is necessary. Ongoing bloodwork of the PTH is the indicator of whether the glands are working - if they're putting out PTH, they're alive and able to, slowly but surely, do their job.
Glad you wrote. When I see someone reaching out I am anxious to respond. I had felt it was only me who had this problem - that alone caused frustration and depression. It's the only issue I wish I had been more forewarned about. I hope I can relieve some of what you're feeling. You must have a fairly good constitution to be able to bare what you have gone through - it is a lot.
Keep reaching out and take care of yourself. (I think email addresses get blocked.)
I also was kept in hospital for 1 week due to low calcium. My parathyroids have not started again 20 MONTHS AFTER SURGERY. I had 2 removed during TT.Sometimes they get shocked, during surgery, and it is a catch22 because they get lazy with the supplements and don't think they have to work.
Hello I have same problem as you I had TT 4 weeks ago and spent 9 days after surgery at hospital due to hungry bone syndrome I know how you feel after one week I was crying all day and night very depressed missing my 2 years old who can’t understand why I’m away why I’m having IV all the time.
I ‘m still taking lots of calcium and vit D (4 tablets 4 time a day) doing blood test twice a week still have cramps and tingling all over my body. My parathyroid glands are not working anymore so my problem is permanent. my endo said that vit. D is the one who will make my calcium level normal again. Just hang up it will come to an end one day hope you will go home soon if you need any information send to me plz if you just need to talk I’m always here good luck
I feel your pain. I am one month down from second surgery. After second surgery (TT) I was in hospital for extra three days due to non-functioning parathyroid. I began having serious migranes that made me catatonic. Now I get my level drawn once a week and everytime its something different, take Vit D once a day and calcium twice. Then they'l chsnge it up cause the stomach pains get so bad they check my levels and I'm really low. I am having rdiation next week and nausea is a side effect. I am scared the nausea and vomitting will interfere w my calcium...Hope u luck....
I am so sorry,,,,I had right lobe removed 1-16-08 it came back with small papillary cancer and so on Jan 22 I went back and they removed the left lobe and remaining thyroid tissue. The first surgery was supposed to be a 24-36 hour stay and I ended up staying an extra 3 days,,my calcium levels dropped.....I had gastric bypass 6 years ago so that makes things even trickier.....I am chewing 6-10 calcium chews (citrical creamy bites) taking 50,000 u of vitamin D daily and also taking 10-12 citrical huge pills daily and my calcium levels are still up and down....some times they are low and next they go up and then down. The leg contractions are horrible and my legs ache all the time...before surgery my PTH was running in the mid 130's I had it drawn a week ago and the DR office still doesn't have the report back yet. I saw in the path report that there was one parathyroid imbedded in my left lobe so I know I am minus one parathyroid...the DR told me that he imbedded another one in my neck and it might or might not start working,.so that means I am possibly short 2 parathyroids,,,,well,,,,,he says that you can have anywhere from 3 to 12 and they can be even down the side or your heart or in the back of your throat....who knows how many I have left, but I hope if there are one or two left that they get off their lazy behinds and start working again,,,This calcium deficit is the pits....I will go broke buying calcium and vitamin D. My insurance company is complaining about the prescription Vitamin D . I have to have prescription cause of the high dosage....Seems like lots of us have these problems,,,,I just talked to my ENT (surgeon) and they are getting me an appt with an endo. The endo told my ent that she wants to see me soon even if she has to see me on a Saturdayl.WOW That would be awesome....But then again,, I must be having lots of problems or she wouldn't do that... I hope I don't die waiting for an appointment....How low can the calcium go? I believe the only reason I haven't had a seizure yet is becasue I am on Lyrica for fibromyalgia...that is used for seizures also....Thank God that I am on that. I started taking it in November before I knew I had thyroid problems....I am so glad I found this forum,, sometimes we have to take our health into our own hands and talking with other folks that have been through it really helps us understand what is going on...Hope everyone has a good day today! Love Ya'll
Do you have Graves Disease? I had G.D. and thyca both. Had TTin Dec 06. I was in the hospital for 6 days due to hypocalcium. My endo told me that G.D. patients are more prone to hypocalcemia and hungry bone syndrome. My tetany just got to the hand clenching stage where I couldn't pick up a cup. I live alone so I was kept in the hospital until my calcium levels came up. By the 5th day I was going bonkers with boredom. It was Christmas time and everyone was busy and my family had already left town. Yep, I shed a few tears before the surgeon finally came in on the 6th morning and said I could go home. I felt like a prisoner who had been released!!! I was on oral calcium supplement pills for about 3 months. Now I take 3 Viactiv chews each day to help ward off osteo.
Hope your parthyroids kick in soon!!!
I too had low calcium after a total thyroidectomy. I experienced the tetany and I know how excruciating it is. I had one parathyroid re-embedded, and three others remaining (thought the surgeon never saw two of them). It has now been 18 months, and my parathyroids are coming back into action!
My message is: don't give up yet on the parathyroids. Doctors and surgeons have said to me that if there is no improvement after 6 months, it's hopeless. Wrong. Taking massive amounts of calcium and calcitriol will help keep your calcium blood levels stable, but your parathyroids will be suppressed, with no reason to work harder. The key is a slow and steady decrease in the calcium and calcitriol (prescription Vitamin D)--under a doctor's supervision, of couse. Calcium and PTH tests after each change in the dosage. From about 16 calcium pills a day, I'm down to 4, with one over-the-counter Vitamin D pill. I hope this account is useful for some of you. Even a year later, your parathyroids can start to function.
Good point. Just wanted to back up what hazelhurst said: I was advised to slowly wean myself from all the calcium and vit d. too. and get it down to an average amount - to supplement bone health. If you baby the glands, they'll let you do the work. It's been very difficult to know when to cut back and when to feed an attack of tetany that might get out of hand.
Hope for all that those glands do get revived.
WOW!! Kind of makes me scared to take so much calcium,,,but then again I am scared NOT to take it after those bouts with tetany...I never knew that could happen. My legs are aching now,,,,I dread tonight. I never knew that it would be so crucial to get the right amount of calcium after my TT. I would have never had gastric bypass if I had known all the negative things that I know now 6 years later. I really makes absorption of medication tricky.....thanks ya'll
Actually, the first time I saw or heard anything about not babying the glands was on a website about cats. That’s right - cats! And I got pretty far down a page of really good information before that word was mentioned. At first I thought was a typo, or I was having symptoms or something. The dr did mention it soon after.
Thanks for sharing your experience. I can really understand how you feel , I had a bad autoimmune problems after my pregnancy with twins. My heart goes out to you because your experience is terrifying. Keep us posted on your progress. There is a lot of good people on this forum.
I'm reading these posts from a year ago and I'm hoping someone is still out there. I had a TT Feb of 07 and I too had the hypocalcium attacks, after my parathyroids started working again I was able to cut back on the calcium, here is the problem now and I'm just wondering if anyone else is having it. I can be sitting with my feet up and suddenly my toes will go in to contraction and I will get really painful leg cramps, feels like my leg is going to break. I asked my endo if there are any resiudial side effects from the attacks and she said she didn't know of any and no studies have been done. So, I'm just wondering if anyone else is having this problem, also my hands/fingers become stiff and just feel strange, my fingers sometimes feel like their popping. thanks for the help, you can email me directly, my address is Azelea4 and I am on aol. thanks again.
I had a total a parathyroidectomy 8/27/09 & in the process of trying to find the bad parathyroid they found cancer on my thyroid & so removed all of my thyroid. The day after surgery I started having bad tetany in which it felt like my whole body was in a giant contraction & vibrating all over. They had be on IV calcium off & on for 3 days before I went home. My calcium levels came back up & I was feeling better, but in the last few weeks I have gradually gotten to feeling worse with my muscles & bones hurting all of the time and I don't have much energy. Any little bit of exertion makes my muscles burn & hurt, my muscles feel stiff & my bones hurt. Even blow drying my hair hurts my arms. Does it sound like this is all related to the surgery? I'm thinking I should call my Dr. & ask him about it. I've been seeing an oncologist & had radioactive iodine treatment 3 weeks ago. An ENT Dr. did my surgery & I haven't seen him since I had my stitches out. I do have fibromyalgia too, but before surgery I had my symptoms pretty well controlled, so I'm wondering if everything has caused a flare up of that. I'm ready to start feeling back to normal again and get my energy back.
Wow it's been for ever since I've been on here, but since I'm 4 years post surgery I wanted to give an update on what happened. I just want to say first though I wish nobody else had to ever deal with this problem but in the same sense so glad I am not alone. Well after spending an entire month in the hospital I was able to go home on oral calcium every 2 hours including the middle of the night. Over time I slowly cut back and kicked the parathyroids into working order. That was about 2 to 2 1/2 months post surgery. Continued with calcium and blood draws for about a year then stopped everything. Thought I was better but a year later my calcium dropped again and the tetany set in though not as bad. Just my hands. Went to the er got iv calcium and was home by morning. Started daily supplements again. Had another bout of low calcium again about 6 months after that and again not as bad just hands locking up. That was in June of 2010. I have since then done just supplements at home normal dosages and get regular blood draws. Last blood draw was just a few days ago calcium is a little low so we are upping the amount of calcium by a little and I am on to blood work every 4 weeks until it shows to be stable. Still have anxiety from what happened though and to make matters worse I have just been diagnosed in the last week or so with lupus. My problem is my doctors keep asking me why my calcium is dropping. My parathyroids are functioning and blood work shows they are within normal limits so why does the calcium continue to go low. I thought they were the doctors and were supposed to be able to tell me that. Just curious but is anyone else that had the hungry bone syndrome that now has working parathyroids having the issue with their calcium still dropping every once in awhile? Have a blessed day.