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.

[utahmomma]

I ended up losing one parathyroid during my TT.  It took a few days post-op (and taking calcium supplements) for the tingling and cramps to go away.  My endo told me to stay on calcium/Vitamin D/magnesium/zinc supplements the rest of my life.  Besides, I don't want the calcium getting sucked out of my bones.

The thing my family found really helped post-op was to take Viactive calcium.  They are soft chews and come in chocolate (and other flavors).  They are much easier than swallowing pills right now.  We kind of just ate them like candy.  :-)

Now we all take a pill form of calcium (and other minerals).

Good luck - even my sisters who didn't lose parathyroids had the same problems.  Those little things are touchy and don't like to be disturbed.

[mahnie]

Thanks for this reassurance. I am hoping not to have to keep up the supplements but it nice to know that it is not too onerous for your family.  Did your doctor come out directly and say that they had taken out some of your parathyroids?

[utahmomma]

My surgeon told me when she checked on me the next morning.  She said my thyroid was so "sticky" and completely encompassing the parathyroid she couldn't save it but was able to leave its three friends in there.

My entire family is just resigned to the fact we will be taking hands full of pills the rest of our lives.  :-)  Calcium is no big deal.

[mahnie]

Thanks Utahmomma.

I will report back on whether I need to take Calcium for life that is once I know that the thyroid was not malignant.  No real reason it might be except you never know and I worked with X-Rays in the '60s in a scientific lab when I am sure we never knew to take any precautions.

[utahmomma]

I remember when I was a kid (late 60's) some of the shoe stores had x-ray machines you could put your foot into to see how your foot fit.  Wild.

I've had many doctors I have all the symptoms of a "down-winder" except I'm too young (and I'm the oldest of five - four with thyroid cancer).  There *were* studies going on here (Utah) to research thyroid cancers in "next generation" people who may have been exposed through ground soil, water, etc.  Surprise - the funding mysteriously was pulled.  :-(

It would be nice if we could get definitive answers as to the "why" of our problems but it seems we are just left to deal with the consequences.

So will they have the final pathology results for you tomorrow???

[hazelhurst]

I had a total thyroidectomy last July, and a severe case of low calcium. (By the way, it's not at all unreasonable to ask about the parathyroids--my surgeon told me one of the parathyroids was "bruised" during surgery, and that he saw two others intact (presumably a fourth was in there somewhere!). My calcium levels were low after surgery, and I had a seizure (rare, unexpected at my level which was around 6.5; total body cramp--I was paralyzed!), which lasted a few hours. It was frightening, but the cure was simple: pump calcium through the I.V. I had to stay for a week--on a heart monitor, because the heart is a muscle--in the hospital until my calcium was stable. I was taking massive doses of calcium upon release, 16 pills a day (at 500 mg a pill), in addition to magnesium, vitamin D (calcitriol) and hydrochlorothiazide. This combination of drugs can lower your potassium, so be sure to check that as well at some point. I think the test is part of the normal "panel" they do. Gradually, in consultation with the doctor and after many blood tests, I have decreased the dosage. My parathyroids are kicking in again. Four months after surgery, I am down to 8 pills a day. Next week I'm going to stop the hydrochlorothiazide, then hopefully the calcitriol, and so on. I hope to get down to a reasonable daily dose of calcium (I'd be quite happy with 2 pills). The trick is to carefully monitor the calcium and parathyroid hormone levels. Good luck!

[utahmomma]

Holy cow!  Okay, you win the worst parathyroid experience I've heard of!  I did have to have calcium in my IV as did one of my sisters but I was released the next day (less than 24 hour stay) and my sister was in about 36 hours (couldn't stop vomiting from the morphine).

My nurses and doctors were watching us all closely for thyroid storm but the first of us who had calcium drops was pretty much a surprise to them.  After about the third or fourth of the family they became really adept at keeping close tabs on the calcium levels too.

Note to everyone:  let someone know they need to check your calcium levels ASAP if you start to experience tingling or cramping (especially in the legs).  My family started smuggling in Viactive Calcium Chews for all the surgeries but I'm sure there would be a few medical professionals who wouldn't approve.

[mahnie]

I just had my week post-TT followup and was pleased to hear that my large goiter was benign as was expected but you never know.  The surgeon also said to stop taking the calcium and that when I go back in 6 weeks (after synthroid) with my thyroid tests she does not need to see any calcium tests (I asked).  I then asked if she saw my parathyroids during the surgery or whether any were trapped in the thyroid.  She said that part of one was and did not have her surgical notes yet in my file.  She went on to explain that in 80% of the thyroidectomy she does (400 a year) you can see 2 of the parathyroids attached to the thyroid and you just push them aside and if they get mangled reimplant them.  She also said that often they are hidden.  My lips seem slightly numb but that may be imagination now I am thinking of it but definitely no tingling so I am hoping that I have been lucky.  What might be interesting for others is that she said that while she first thought it was something the drug companies were pushing she had seen remarkable results using Scarsolution by Neosporin used on thyroid scars.  She thought it made 6 week scars look like 6 month scars.  It is expensive but I am going to try it.

[Caseylee]

I just had a TT on 11/21. Had rock solid calcium levels after surgery up to and including discharge 24 hours later. Thanksgiving day night I ended back in the ER due to severe tingling in the hands, arms and upper lip. Sure enough my calcium plumeted to 7.0 from the orginal discharge of 8.9. I ended up staying in two more days until the IV calcium and later pill form built up enough to get me back to 8.6. I have had two subsequent blood tests and still at that level, but only due to 6 calcium pills a day and a rocotrol. My doctor includes a search for parathyroid glands in the biopsy. In my case none were found. It's unusal to plumet that far past surgery but he thinks perhaps a blood clot formed somewhere around the main flow to the para's and perhaps they will kick back in soon. My problem is that I have lost a lot of volume and have a raspy voice. Everyone says it could take up to 3-4 weeks for that to come back. Has anyone out there had the same problem with the voice after surgery and is that time frame reasonable to expect?

[utahmomma]

My family has had 6 total thyroidectomies in the past 3 years.  Only one out of six had raspy voice after and it took about 6-9 months for her voice to come back.  She said Chloroseptic throat spray helped a bit.

[Hypoparathyroid]

Hi,
I'm 34 years old and I had a total thyroidectomy 2 years ago. I have severe problems with my calcium and Vit. D levels after my surgery. I spent a week in the hospital after going into calcium shock 5 hours after surgery. I take 50,000 UI 3X week and 2400-3000 mg of calcium a day plus 200 UI D w/ calcium. I still have tingles every day in my face, hands,head etc. I have my levels tested reg. but each time it's at 8.5 . My DR. ups my intake but my next appt. I'm @ 8.5 again. My body is needing more and more and I'm still tingling what is the long term affects from the intake of such a high dose of supplements. I would also like to mention the nausea,dizziness, muscle aches and headaches. I am told my my thyroid levels are ok I currently take 175 mcg. of synthroid.

[hazelhurst]

Just checked the thread. I hope you are doing better! Have your PTH levels changed at all? In other words, is there any indication that your parathyroids are starting to do their job again? My calcium levels are still around 8.9, but over 5 months I've managed to decrease by half the amount of calcium I take. Hang in there!

[DMLee]

Want to thank everyone for making me feel not so isolated and frustrated.  Just had a complete TT 2 months ago and battling the Calcium thing.  Little tingles as I write this.  Also getting the Synthroid balanced or trying to.  "An absorption thing" as the endocrinologist puts it.  I also did the tetany thing in the hospital the second night in during the initial surgery and spent 7 days in the hospital, going crazy waiting for a little number to go up.  So, I can see it is a waiting game from what I read here.  Thanks again everyone...and Happy Holidays!

[mahnie]

Hi

I started this post after my TT on 11/13.  I was on thyroid replacement .125 mg for 6 weeks and since my TSH was low the dose was reduced last week to .112.  What has happened in the last few days is that my lips are numb and I have a dry mouth and difficulty swallowing.  I didn't notice any of this - perhaps the lips a bit before this so I am wondering whether these are effects of low calcium which I took for the first week before I started thyroid replacement.  Otherwise I feel the same as I did before the TT when I was subclinically hyper anyway! Lots of energy and OK. I imagine that will change a bit when the lower dose kicks in (I have only taken it for a few days) but these mouth symptoms are odd.  Thanks for any information/insights.  I will contact the doctor if it persists.

[DMLee]

I know I have read that you can have tingling in your hands due to low Calcium as well as being hypothyroid so that's a toss up.  I know my swallowing feels funny sometimes-almost like when I swallow my chest goes up and down-a friend of mine who is a Speech Pathologist told me it is the decrease in tracheal excursion cause of the surgery.  She recommended just to keep stretching my neck back and side to side.  I find if I keep my jaw closed that it stretches even more.  Hope that helps a little.

[883hugger]

I had a total thyroidectomy Dec 4, 2006. Its now been over 30 days and they cannot seem to get my calcium regulated. They told me I only had 3 parathyroid glands and all were left in tact just fine. I'm currently taking almost 3000 mg/daily of over the counter calcium supplements. I have low calcium symtoms daily and suffered a couple very serious "attacks". Is anyone else having this much trouble getting regulated?

[18CC12]

Did you calcium levels return to normal?

[DMLee]

Hang in there with it.  At least that's what I keep telling myself.  I had a complete TT on October 13th and we are still trying to get me Calcium higher than 8.3 and they saved two of my Parathyroids and reattached another.  I'm taking 4000 Calcium as well as like quadruple the amount of Calcitrol.  Just as I think I have it my fingers start to tingle, which they are doing now.  Apparently it is such a shock to the Parathyroids that they can take a long time to wake up again.  I have blood work this Monday so hopefully we are going to be on the rise.  He had to increase my Synthroid too cause my body just doesn't absorb well.

[crst]

I had a total TT on October 13 and my legs (thighs especially) hurt often. My hands make it difficult to use a mouse and sometimes they just don't do what I want. Has this happened to any of you?

[MJ13]

I thought I had a bad hypocalcemia occurance after TT, but you definitely win the award for worst reaction.  For me, about 30 hours after TT my fingers, toes, and lips started tingling.  I told the nurses, and my surgeon ordered calcium thru IV.  Just my luck the computer for meds distrobution broke down that day and it took them 8 hours to get my calcium in me.  In the meanwhile, my hands started cramping.  I later read the hypocalemia left untreated can cause convulsions and the person to stop breathing.  Because my calcium level would go up high enough, I was in the hospital for 6 days instead of the expected 2 days.  I was on cacitriol for 2 months plus another calcium supplement for a while longer.  I now take 3 Viactive chews daily plus a multi-vitamin.  My parathyroied were all intact after TT.  My Grave disease is what caused my hypocalcemia.

[crst]

I experience days of great energy followed by 2 or 3 where I am barely able to get out of bed. I am almost 11 weeks post TT, but I need to go in for follow-up because the papillary carcinoma (stage 1) spread to the lymph nodes on the opposite side. I feel lazy, but I really don't have any energy. Should I be up trying to build my energy back up?

[chinchin]

Low caliculm can cause the mouth to tingle. I have had three of my parathyroid's removed. One was damaged during surgery of my right thyroid being taken out. They told me the parathyroid is as small as a grain of rice and very easily damaged during surgery. If I don't take my calicum, my hands will stick and hurt very bad. My feet, hands and lips will tingle very badly. I can't sit more than 5 minutes without, them tingling.

[mesquite]

I had a TT in December.  My legs felt very heavy while I was in the hospital and I had cramping in my hamstrings the first post op day.  The leg heaviness reoccurs occasionally in the early mornings.  Ca and Calcitrol have really helped with the hand and face tingles.  I have tingles across my upper back frequently.  Has anyone had that peculiar symptom?  I take 4 Ca with D daily and two Tums usually stops break through tingles in my hands.  

[Thypatient]

Yes.

Augusut 06 I had a double surgery that was a TT and removal of one hyper parathyroid gland.  I had the whole gamma of symptoms you describe.  I still take calcium and calcitrol.  When the tingling seems like it's increasing, including tingling across the back, I up the dose on the calcium.

I had have the leg issues you describe and was prescribed magnesium for that.  My cramps subsided so I went off the magnesium, only taking the one mult-vitamin I have for years that includes magnesium.  For the last several weeks I've been reexperiencing this problem again so I've gone back on the magnesium but at a much lower dose.  It seems to help but of course I hope things subside again.  It was scary, on the first reocurrence I had to have my husband get the pills and I put one under my tongue.  Luckly, he and the pills were around because I couldn't move.  Now I keep them next to the bed.  I'm now looking into if any dietary changes can help.

I was always hoping to have to take only my thyroid med and one multi-vitamin.  That's not happening but it's become okay.

The upside of taking all this calcium is that the osteopenia I didn't even know I was suffering from has reversed itself.

Sorry to ramble.  Good luck.

[redhed87]

I had my tt May 30th and i am just now feeling "normal".  It takes time to get your meds straight- you are probably still extremely hypo.  I had tingling in my back a few months ago, porbably a side effect form the changing of meds so frequently.  I also have "creepy crawlies" in my legs.  I guess it would be described like people with restless legs.    I had no trouble with my parathyroids- I didn';t have some eye twitching when I got home from the hospital, but the surgeon siad it was probably a coincidence and if it didn't go away, to come in the next day.  It did go away.  Our bodies have been traumatized.  It takes time I guess.