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.

[Katbrxie]

MY NAME IS KATRINIA, JANUARY 22 2016 I HAD A TOTAL THYROIDECTOMY I WAS SENT HOME DAY AFTER SURGERY I FELT OK SUNDAY I WOKE TO NUMBNESS, TINGLES FROM MY FACE HANDS AND FEET I WENT BACK TO HOSPITAL MY CALCIUM AND MAGNESIUM WAS LOW THEY GAVE ME A BAG OF EACH SENT ME HOME I FELT GOOD THAT MONDAY I KINDA SLEPT ALL DAY I KINDA FIGURED THAT WAS NORMAL FOR HAVING SURGERY TUESDAY 1AM I WOKE UP TO HAND LEGS FEET DRAWLING UP I HAD LOCK JAW COULDNT OPEN MY EYES AND MADE NO SENSE CALLED 911 ENDING UP MY CALCIUM AND MAGNESIUM WAS LOW AGAIN THEY PUMPED ME FULL BACK TO NORMAL I FELT DR CALLED TUESDAY MORNING 8AM ASK IF I COULD COME SEE HIM AT HIS OFFICE GOT THERE ABOUT 12:30PM AND HAD ANOTHER EPISODE THEY PUT ME IN WHEEL CHAIR RUSHED ME TO HOSPITAL WHERE I WAS ADMITTED FOR 6DAYS BEING PUMPED FULL OF CALCIUM AND MAGNESIUM EVERYDAY PLUS ALL 14 PILLS I WAS TAKING IT WOULD ONLY HELP FOR ABOUT 6 HOURS THEN BACK DOWN I WENT FINALLY THAT FRIDAY I WOKE UP AND DIDNT NEED CALCIUM OR MAGNESIUM THRU VEIN WAS VERY THANKFUL MY DR SAID IT WOULD BE 3 WEEKS BEFORE MY PARATHYROID WOULD REGROW BLOOD SUPPLY AND START TO FUNCTION AGAIN I PRAY FOR EVERYBODY THAT NOBODY WILL HAVE TO GO THRU THIS IT WAS THE SCARIEST THING I HAVE BEEN THRU AT THE AGE OF 25 IF ANYBODY HAS ANY QUESTIONS OR ANYTHING TO HELP ME OUT THRU THIS JORNEY I WOULD LOVE TO HEAR! THANKS MUCH LOVE AND SUPPORT TO WHO MAY NEED IT!

[MrsSleep]

Is there any update for your problem I had the same one just not as bad I have to take calcium pills 3 times a day it ***** don't know of mine is going to go back to normal.... :(

[MrsSleep]

***** dont know if*

[Misjanmom]

My daugher is going threw the exact same thing. she is 25 as well.But she is still in the hospital.going on day 20. Cal,magnesium and potassium.  going up and down. But it stays on the same pattern.The Dr dont know what to do. They keep saying it will kick back in. But now they just shack thier heads. And say this shouldn't happen.

[18CC12]

This is a message for janMom or anyone who can help, I am in the same position as your daughter 2 months after thyroid removal, how is she doing now has her calcium returned to the normal level? Currently my 1 parathyroid glad (rest couldn't be saved due to the cancer) is said to be working at the normal level, all I can do is hope time is a healer and it becomes sufficient for maintaining calcium. If anyone has any advice I'd love to hear from you

[essmama3]

I would love to know how u have done since i am so scared of this repeating for me too how are u now and since episodes? Mine were stumped by magnesium being low has yours regulated and stayed good. I had to go by ambulance too did your legs teitch after crisis episode even though numbers were good again? Need hope for  life after this please.

[Dave0422]

Im not sure if this site is still active or not. Please advise if it is. I need help!! Having major issues after total thyroid removal. Low calcium, numb face, hands, legs etc.   I dont know what to do anymore!!  Been 2 months now!!!  

[myhrtsnala]

wow
I have never heard of all that before. I had my complete thyroidectomy almost two years ago. Recently I lost my health insurance so I couldn't afford the medicine. The doctor said I could increase my calcium and increase my vitamin d but that is not helping. I am dizzy and have a migraine and my fingers are tingling so I guess I will have to go back on the prescription calcitriol.
I did not know the symptoms could be so bad. I would love to have pure calcium pumping through my veins right now. Good luck to you and all the people in this same boat.
Pam

[mmc2k6xxx]

Oh I'm on 100 mcg thyroxine and 2.5mcg one-alpha and 3 sandocal effervescents 1g each daily?

[mmc2k6xxx]

Thanks for the feedback guys I feel better today I saw the endo on Monday and he doesn't know what's causing the queer sensations I'm guessing it's my body adjusting? I think I'm suffering underactive symptoms too as I'm freezing all the time so they'll check my bloods on Thursday he's basically assured me nothing bad will happen as long as I take my calcium although I know my potassium has been low? I take it's really trial and error as everyone's bodies are different?

[strawberryseed]

I personally do not see how any doctor with a license could take someone off of Calcium, after TT, and parathyroid removal. Is he crazy? He threw you into a life threatening situation. It is VERY important that we remain on Calcium for the rest of our lives. But, I must express, that Calcium is not the only mineral that we should be taking. I take 1,000 mg of Calcium Orotate (orotate ferries the mineral atoms into the cells and tissues). potassium, magnesium, and selenium. I had first hand experience with not taking enough calcium. The muscle spasms, and cramps almost kept me from walking (literally). Not that I wasn't taking calcium, I was not taking enough, and I had not added mag, potassium and selenium. Now, I do not get cramping. It is also important that you keep these things in your body. You cannot take them when you want to or skip them. We have to take care of ourselves. Some doctors don't have a clue.

[18CC12]

Sorry what procedure did you have done?

[hazelhurst]

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.  

[mmc2k6xxx]

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 =(

[jodielynn2430]

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!

[GettingWellNow]

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

[rthompson29]

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.

[missy92]

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

[Obtanium]

I had a total Parathyroid-ectomy in November with partial transplant of a portion of one gland. To step back a few, a am an end-stage renal failure patient on home hemo dialysis. I am having a hard time adjusting to the side effects of low-calcium. I am taking oral liquid calcium carbonate, os-cals here and there and more tums than Id like to admit to :) Does anyone have any other suggestions to jarr this partial gland into working again? My PTH is slowly raising, and I do have some good days (more good than bad), but the bad days really depress me and sometimes ti seems like there is no "light at the end of the tunnel" to get back normal.....Any suggestions would be helpful! Thanks, Dan

[Wantogarden]

yeah, coral does have minerals like other products from the sea but some companies might "take some out".  i raised this question before and the levels are under the U.S. guidelines, so they say.  I buy mine from Puritan's Pride online.  they have a live chat customer service and so you can ask them all kinds of questions on their products.  that's why i take both coral cal and cal carbonate so that which ever is harmful, i half that harm, hehe.  i also was told by my nutritionist that calcium lactate is best but you have to take many to get the mg needed.  so it's troublesome to.  

[chris5666]

i had that calcium thing too...they gave me calcium through an iv.  mine never went back to normal, as it's been two months and i still experience the numbness and pin needle effects.  however, i also have a food allergy to dairy....so i can not eat all the dairy foods.
i started taking calcium on a daily basis, and chewed tums when the problem got severe enough....but it appears to have leveled itself out. i take 2,000 mg of vitamin d with 1000 mg of calcium daily, and this seems to help much.

if you can eat dairy, raid your fridge for ice cream and cheese!

[Thypatient]

Welcome.  Congratulations on getting through your surgery.  Sorry you have to deal with this aspect.  It can be scary, I know, but hopefully it will be temporary.

There’s a lot to learn and figure out when this happens, but hopefully you will glean all the information you need to deal with it.

I hope you benefitted from this thread but do encourage you to repost your question in a new one (green ‘Post a Question’ button), as this one is older dated and can get passed by easily.  Plus the more threads on this subject, the better.

One suggestion on getting info I’d like to give you is the site:

www.hypoparathyroidism.org

That’s a place with folks who are experiencing what you are - some permanent, some temporary.  It has great info and a forum that might help you.

Keep in touch.

[Thycramp]

Here is what I found when I searched this which sounds a little ominous. Do you have different information on it?

Coral calcium
From Wikipedia, the free encyclopedia

Coral calcium is a salt of calcium derived from fossilized coral reefs. Living coral reefs are endangered and cannot be harvested without significant damage to the ecosystem, and because of this, coral calcium is harvested by grinding up above-ground limestone deposits that were once part of a coral reef. Calcium from coral sources need to be refined to remove pollutants of the source environment. It is marketed as a dietary supplement, but its benefits over other calcium supplements are unproven and biologically unlikely.[1] Additionally, coral near Okinawa has absorbed relatively high amounts of lead and mercury, leading to concern that these unregulated supplements may be contaminated.[2] Further, coral takes millennia to grow, leading to environmental concerns.[2]

[Wantogarden]

p.s.  should have said = the body does not bank up calcium after around the age of 25.  i tell my kids to eat more calcium rich foods to bank it up in their bones for future bone health.

i wish i can hear of someone who has managed to exercise & have learned ways to manage the calcium issue cuz when i try to do more, that night i hurt :(       It's hard to try to lose weigth when you can't "exercise" like others.   I guess I could keep drinking liquid cal during exercise...but that is a sad  scenario to even imagine.  but, never say never i guess.       warm regards everyone!

[Wantogarden]

since the body doesn't really "bank" up calcium, we have to replenish every day.  consider coral cal which has a higher obsorption percentage.  i take both coral cal and the cheap cal carbonate through out the day (4 times a day or more depending if if feel my hands getting heavier/cramp start up).  you should be taking the prescription vitamin D called calcitriol which i'm told is a more refined form which does not need to go through/burden the liver.  ask your doctor.  magnesium is a must for better cal obsorption - everyone know that (doctors should anyways).  i find the orange juice with cal a great fast recharger for desperate need to ease the hard to bear cramps.  a nutritionist is a good place to seek better overall foods/supplements to help you cuz the endos can only do so much.  sometimes i'm told to take ADVIL for the cramps.  it's a try/seek thing to gain our lives back.  best wishes!

[Thycramp]

Also I apologize if I sound like I'm complaining after only 3 weeks but 48 hours of not being able to lay down to sleep has me in a state. I don't mean to be a whiner or complainer, I'm just trying to educate myself the best way I know how and what better way than to talk to others going through the same thing. Thanks for all and any help/suggestions.

[Thycramp]

I'm a 46 female living in Toronto who had a long history of over active thyroid even after RAD treatment. Biopsies predicted 98% chance of cancer so a total thyroidectomy was performed. Evidently my gland was massive so they had to cauterize substantially to stop the bleeding. (Which I’m now wondering perhaps affected the parathyroid glands and will follow up on tomorrow). I felt fine the first day and then had problems with low calcium (but no symptoms so was held an extra day) and put on Calcium and Vit D for a further 7 days. Upon stitch removal they said I was fine and only needed to take the thyroid supplement. They did no blood work at this time and none is ordered for 6 weeks to 8 weeks they said to get an accurate reading of my levels. Furthermore I’m not scheduled to see my endocrinologist until July several months from now. The best news is the gland was not malignant at all.

I had been feeling fine then the cramping started so I was put back on calcium/Vit D a bit less than a week after stopping. Good news as well was I had no numbness however I was suffering from daily headaches although I’m susceptible to headaches with barometer changes which have been occurring. My biggest problem that I don’t see on here is the massive cramping I’m still experiencing and I’m getting it everywhere. I take 2,000 mg of calcium with 500 i.u. (the pills I take are 500 calc/125 i.u. of Vit D per)  of Vitamin D in two intervals with lots (10 to 15 ten oz glasses a day) at least 2 hours after my thyroid supplement and I’m still cramping. One day I’m fine and the next it’s out of control. Hugging someone goodbye can cause back, shoulder, fore arm and neck spasms. Picking my leg up can cause severe cramping in my feet, shins, legs, buttocks and even groin muscles that can last for 5 to 10 minutes and then occur periodically throughout the rest of the day or evening.

My endocrinologist had said to take 1500 calcium and 500 Vit d but I went with the 2,000 due to my age and intensity of the cramping. It still isn’t enough on certain days and I’m now 3 weeks after surgery. My headaches have come and gone on certain days, still no numbness but I have no clue about what to do about the cramping. I’m told too much Vitamin D is hard on the liver and kidneys and I’m not sure if there such a thing as too much calcium after reading the above stories. I have not been told to take any magnesium but was told to increase my potassium intake which I’m doing with fruit and vegetables but may look into supplements. I’ve cut out salt completely and reduced my 4 a day latte (90% skim milk and 10% espresso habit) to one or none a day. I have only gained 3 or 5 lbs (which I needed) and have had no change in bowel movements (sorry to be blunt). I’m not overly hungry due to the high intake of water making me feel full so I’m definitely not over eating or gaining weight.

Most of you above complain of hand cramping but that’s only one area I’m affected by and probably not the worst of the cramping I get.  I’m at a loss other than to go see my Naturopath to get a better idea of what to take but she will probably tell me to see my endocrinologist.  How are people checking their calcium daily are they going and getting daily blood work done? And why would I be fine for 4 to 6 days on nothing after stopping the calcium and Vit D to now be in a situation where I’m worse than ever? Will I build up or restore those levels so the cramping stops or are there any other suggestions. I didn’t see issues on severe cramping above so I’m quite confused on what route to take.  I’ve been trying to follow all the rules and like I said one day I’m almost pain free and then a day like today I can’t even lie down and I took 2650 of Calcium and 700 i.u. of Vit D with 15 ten oz glasses of water. Any advice or similar situations and what you’ve done would be greatly appreciated.

[dscoochie]

You may want to post a new question on the forum instead of replying to this older thread.  You will get many more responses that way.

Thinking of you and your husband.

D

[unhappywithdr]

Hi all~
My husband had a total TT after his pathology came back showing malignant cancer of the papilary glands. His surgery was just over 3 months ago, and since then he has been feeling AWFUL and hasn't been able to go back to work yet(been almost a year since he's been feeling bad and not been able to work). He had low calcium at first, but seemed to have been stabilized by the time he left the hospital. He has had really bad pressure in his head, and feels like he is going to pass out, will start shaking all over and just feels like he is about to go crazy, This will come and go a couple times a day, and sometimes not at all, but its happening almost every day. he's been to his dr I don't know how many times, and they can't figure out what the problem is. There was a time he went a month in a half ago or so, and his horomone levels came back really low so they almost doubled the dose, and i am no dr, but i think that was part of the problem, just shooting up his dose like that couldn't have been good.  He went to the dr, yet again last week and now they want him to see an ENT this week, so we'll see what they have to say, but I wanted to know if anyone else has had problems like these after surgery???
Thank you =]

[mesquite]

I had a TT December 2007.  I am taking two Caltrate twice daily with Ca levels still below normal.  Waiting 4 hours to take Ca after Synthroid sometime finds me out of the house so I carry Viactiv for those days, since Caltrate without food causes severe indigestion.  I keep a huge bottle of Caltrate in the car.  Something  new, since my TT is muscle cramps if I stress a muscle.  I've learned to relax and the muscle will relax.  April 08, the surgeon told me my parathyroids are still stunned and will recover.  I still have the buzzing across the upper back.  My energy level is not up to my usual standards, but I walk every day regardless.  I also have to watch calories which is a new problem, too. Thanks for listening to a whiner.  Mesquite