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.
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.
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?
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.
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.
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???
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!
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.
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.
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?
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.
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.
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!
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!
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.
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.
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?
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.
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.
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?
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.
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.
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.
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.
I had my TT May/06.2 parathyroid glands were removed and the remaining 2 have never resumed working. Stayed in hospital for 1 week post surgery because of the danger of being so low in calcium. Almost 2 years later and Thyroid and Calcium levels still jump around. It's important not to take your calcium too soon after your synthroid. Wait 2 to 4 hours before taking your calcium.
It's been ten years since my TT. I eat well, take supplements, drink liver soup, pork bone soup, but still has to deal with hand cramps monthly after I 'm on my period for a few days. only 3 weeks ago, i found out calcium citrate is the most obsorbable form of cal. still, my hand cramps keep me up some nights if i do chores or gardening in the day.
I even doubled up my cal. these 3 weeks. I'm pretty out of tricks in my bag. so, i go in to see the doctor today, maybe low iron worsens the cramps. who knows
just got back from doctor. he said if coral calcium worked for me for years, i shouldn't switch to other forms. (which i did because i went online to search which form is best, and many said calcium citrate). Plus, I don't seem to need iron supplements. ( I tend to think I do when I feel my hands hurt/cramp). anyways, he's checking the usual levels and he'll let me know by the lab report why my hands seem to cramp more these few weeks. I was managing so well too. I can't believe it could just be the switching of calcium form...:(
got back from the doctor's, i made a chart of all my med i took for the past few months and when i started to feel extra hand cramps. He noticed I changed calcium this month from coral cal to cal citrate. I changed cal because of over zealous research on the web thinking i'm trying to do better with calcium. So, he said I have to stick with one type that works and stop changing it and don't take high doses like I did. (I took 3200mg elemental cal from cal citrate). I feel foolish for doing it but thought I loading up so I can do alot of spring planting.
So, I took the old coral cal and i sleep good and today, not noticeable hand cramps and i even gardened for an hour and planted two "Brandywine-big boy" seedlings.
So, learn from this and don't take too much cal as it can cause "low cal" symtoms like I did. O, plus i took iron when Doc said I don't seem to need it. that could have caused my tireness too. It's a fine balance and a constant effort and it's been ten years since my TT. I've had so much joy since, so keep the hope and keep on trying .
Hello, my name is Jackie, I'm a 35 y/o married Mom of three. I am two days post op from TT. I'm still in the hospital because my ionized levels keep dropping. My last reading this morning has me at 0.97. I had a partial Thyroidectomy 9 years ago but I didn't have this problem. They have increased my dosage (orally) and are hoping that will help. I miss my kids so much I'm tempted to take Viactiv as well while I'm here to bring it up but I'm scared I might make it worse. I just really want to be home with my family for Mother's Day but I also want to take care of my health. To add insult to injury I am seriously Pmsing. So the emotional rollercoaster is getting the best of me.
Does anyone have some advice or have been in this situation as far as how low my level is. Thanks. GB.
I had TT on 4/11, my surgeon said that my parathyroids were all left in tact, but I still had calcium issues (tingling in the hands, feet, lips) about 72 hours after my surgery. Taking Calcium with Vitamin D helped a lot. The issue resolved itself withing 7 days of my surgery.
I hope yours are temporary as well, most of the time they are. It is very rare that it would be permanent, but as we know from other stories on this board, it can happen!
I am 8 weeks post-op of TT. Been going thru A LOT!!!! My surgery took over 5 hrs....ENT told me that it was a mess when he went in and that my thyroid was enlarged and the nodules were attached to anything and everything..the only reason I had the surgery was a biopsy came back cancerous and had a choking feeling. Finally pathology report after surgery...Hashimoto's Thyroiditis. I was in the hospital for 5 days because of my calcuim. It would be 9.2 during the day then drop to 7.0 overnight. I have 3 of 4 parathyroid left....still having problems with the calcuim. I am on 2,000mg of calcuim + D, calcitrol and Magnesuim. They took me off hyrodclorthyiside about 3 weeks ago. My last test was last week and my cal. was 8.9 TSH 4.99.....they haven't tested anything else since my operation. In the process of changing Endo Dr because of the nurse telling me that the Dr wasn't in the clinic so there was nothing she could do about my heart racing and general feeling that there was something not right.....turns out the Dr increased my Synthroid too fast!!! This was found out after my general practioner put me on lorazepam for panic attacks....uugh!!!!
I am still not working. Still feeling VERY tired, brain fog, dizzyness, I "tip" over when I stand or if I turn around to fast. My wonderful husband is soooo understanding and helps when he cans.
I am cold all the time. I take 3 HOT showers a day and sleep with my electric blanket on HI...I live in WI and it's been getting warmer.
I am going in for an ENG and audio testing on June 2 and then seeing my ENT on June 4. He thinks there might be some inner ear problems post-op. Anyone else have this?
I get to see my new Endo Dr on June 12. I saw her in the hospital and she was the one that got my calcuim up so I could go home!!!!
I have a lot of info...symptoms so just ask!!!
Almost forgot...my ENT said I could LOOK for an office job, I was a bartender before all this and made GREAT money. He said that with all the problems I am having I will never be able to go back to bartending! Even if I get an office job, I don't know how I will function. I have a hard time functioning at home!!!
Any advice would be greatly appericated!!!!
I lost one parathyroid during my TT (10 days ago) and I keep failing the face muscle calcium test (forget the russian name...). Blood tests of calcium are coming back fine though. I did notice a little tingling in my lower lip yesterday and the day before, but i have started to drink a little bit of milk and eat cereal for breakfast and it has gone away.
Are you still in the hospital? The test--is that the one where they tap your cheekbone and watch your eyebrow? I was classic- I was in a teaching hospital so my surgeon gathered the med students around and showed them how to do the test using me as a subject. I was happy to contribute to their education!
nissah46: That's funny, I had the same experience. Great, our cheeks are contributing to the education of young drs. Hey, where's our fees?
klschmidt: I can relate to your experiences. The only thing I'd question is the dr saying you might want to find another line of work. I have an active job and though it was slow going at first, I still continue to do the same work. Obviously, he and you know your life better than I do but I just wanted to give you another perspective. Honestly, if anything, I think the activity helps to keep my blood flowing, hence, better circulation, etc. (just a theory). This, of course, is all after my body had time to settle down.
glocklt4: Congratulations on your surgery. Hope you pass that test soon.
I agree with thypatient about your work situation. We own a restaurant and last summer was our busiest ever. I worked every night until 3am and I was glad to be able to. The alternative is not very nice! I think you have to go by how YOU feel. Good luck!
Hi, im new to this type of chat forum thing, and i just wanted to say, i feel your pain! im 25 and i recently had a TT, a mnonth ago actually. I had a partial one almoast a year ago and my parthyroid werent even touched, after the TT my calcium levels dropped to 5.9 it was terrible, the total numbness of the body, it was so painful. It happened to me everyday, i was getting calcium injected into me daily and a lot of it. I finally couldnt take it anymore and made the ecsion to leave the hospital against medical advise but once i got home i had no more tingles or numbness. I went back a week later and im fine. still battling the weight gain but im hoping to get different pills soon. im on cytomel and calcitriol but thats all. its refreshint to find so mnay people who have gone through the same thing, its nice to know we are not alone so thank you.
It's been about ten years since TT. I take calcitriol, and coral calcium everyday, plus the synthroid of course. I find that medium exercises help to minimize calcium tingling (for me, I get hand cramps if it's low).
I also find eating oranges helps alot to prevent the symptoms (old ladies at my knitting class told me potassium helps with joint, hand cramps) I also make vegie soups with pork or chicken with bones in a soup, simmered for 3 hours. If I drink it, you really feel nourished and good. Plus, once you tried all the different calciums, don't switch. The most suprerior calcium is of course from plants (the supplement can cost a bit much), then it's coral cal, cal carbonate and my body hates cal citrate. I also recommend making a smootie with a bit of juice, nonfat yougurt and your choice of 4 or 5 fruits for breakfast everyday. You'll feel so good and your intestines will sing for joy.
Somedays are miserable but keep trying and lots of days are so good.
Forgot to mention, at the worst point of my suffering, and the doctors and Endos don't know what else to do I went to a nutritionist and learned alot of extra things to make me feel good again. May I recommend a fish oil supplement, royal jelly, magnesium of course to help cal obsorption, flaxseed oil, and most important, a multi-enzyme , all taken right after a meal. If you'll notice, too much calcium intake uses alot of your stomach acid and lessens good food digestion so, take the enzyme and you will get more nutritions from your food and you poo good too (sorry, but so important). These info, I learn through so much effort. Do some research, you'll see it's worth it.
Keep the faith and hope. Warmest regards, everyone.
You still take calcitriol? I recently wondered about whether it’s okay to take that over the long run. But obviously you seem to be doing all right.
Personally, I take calcium carbonate and find that works best for me. I once read that particular calcium absorbs better if you have an acidy stomach, which I do. I have that from drinking coffee. It’s never really bothered me and especially doesn’t now. I don’t know, but I think the calcium neutralizes the acid or something.
Can you share the soup recipes? I haven’t heard about making soup from bones in ages. I sounds so folksy. My mother was from Ireland and she used to do stuff like that all the time when I was little. She always had beautiful teeth.
I buy Foster Farm (natural no hormoned) chicken or Farmer Johns pork with bones like shank or pork chop, which ever is on sale. Take some meat out to make dinner and the rest goes into a large stock pot. Add 5 carrots, 2 stalks of celery, tomato if like, potato is good, half cup of barley (it cleans the liver and supposedly lessens age spots), some cilantro for flavor and onions too if you like a blood cleanser effect and don't mind the breath thing, a few slices of ginger for anti=inflamatory, and simmer for 2 - 3 hours. Scoop out the surface oil with a soup spoon. Add a bit of salt, pepper to taste. If you have a large family, it will be consumed right after dinner.l If its just you, then put the soup and a bit of the vegies into glass jars, refrigerate and should last you 5 days. So you make it once a week but drink it almost everyday. You will feel so nourished! Eat the vegies too if you need a pre bedtime snack.
Oops, forgot to indicate.......add water! ten cups or so, fill the stock pot to half or 3/4 full. after simmering 3 hours, water will lessen so the end result should have at least 10 cups of the vegie soup.
I used to drink green tea for its benefits (I love the taste of course) but found it makes my hand hurt more and it's true that many say tea lessens calcium and iron obsorption and we don't want that, !!
so, now i drink this tea made in japan called Ashitaba tea (sold online). the story goes that after the bomb incident, this Ashitaba plant sprouted right back up when all the other plants died. So they studied it and found it has tons of nutrients and so it's very popular as a healthy non caffiene tea. I've been drinking it for 2 months and I feel it is a positive habit. how good is it health wise...don't know really, I feel it helps 3-5% of my well being if i HAD to put it in statistics. I also drink roasted corn tea, and roated barley tea tha I buy froma Korean market. they are fragrant, almost like coffee but it's healthy for you. I drink these teas through out the day as it relaxes and de stresses me. Plus, as you know, too much calcium could cause kidney stones so I drink alot to flush out my system to prevent such horror. These are simple pleasures that make me feel "Zen".
You're welcome. I've learned that nobody really knows how bad you feel and nobody has the extra time to cater to pampering you. only YOU can, so why not be the kindest to yourself and provide plentiful nutritional foods to self-help to be strong and healthy. When we feel good, we can help others and do the things we want to do to live life to the fullest.
What gives me strength and hope is my mother's love for me and my love for my own family. I would want to honor them by taking care of me. Plus, I want to be strong so that I can be here for my future grandkids. :)
So, yeah, everyone. Be couragous, do your best to get back strong on your feet. Don't ask why it happened, don't be bitter, face one day at a time and before you know it, you're feeling better and better.
What beautiful thoughts to log onto this morning. Thank you so much for sharing that. I can really use those reminders today (especially after having a rough day at work yesterday and finally getting home at 2:30am; is it any wonder my calcium feels low this morning).
hi i had a TT on the 21st may since then my calcuim levels have gone so low they kept me in hospital for 11 days iv drip for 4 days because levels affected heart 3 weeks later and calcuim still low and now is dropping again feeling very down and wondered if any one out there had same problems and if there levels came up again am taking 4800g caltrate 6 calcitriol 2 mag min 1 vitamin d per day if anybody knows of any tablet that may help with calcuim absorb would greatly be apprecated
alot of folks here have experienced in some form of the calcium issue due to TT. Just follow your Endo's instructions and in 2-4 weeks, I think you should stablize and they will lower your dosage. I take 1 calcitriol, 2 (250mg) magnesium, 2400 - 2800 mg calcium (in coral calcium form), plus my Synthoid. As you can see from this forum, some are luckier than others, so, there's no set outcome for you. It's been ten years for me and i constantly have to be careful of my calcium intake. If i exercise or do more work, I have to take more calcium and eat better. It's a constant effort for me but, hey, all we can do is our best. Try not to mope, or feel sorry for ourselves too often or else it gets pretty depressing. Like I said, one day at a time and there are alot of good days ahead. :)
Some of the beneficial factors in calcium obsorbtion is of course a few minutes of sunlight, try to get it early in the morning around 9 to 10 am. It feels really good. Eat more fruits/vegies, and don't drink tea if you can help it, as it lessens calcium and iron obsorbtion. I make a fruit smoothie for breakfast every morning that consist of: half cup of juice, 1 apple, 1 orange, peach, strawberries, pinapple, banana, and non-fat yogurt. put them all in the blender and it makes 3-4 tall glasses. (don't have to follow the recipe exactly, as I like to put in whatever I have or is on sale, as long as there's 4-5 fruits, it's all good. I've been drinking this for 2.5 years (my family too) and it's great. I also eat a piece of bread so that I can last til lunch.
If you ever feel down, close your eyes and meditate and say "I'm loved and I can do this, I will be couragous and do all I can to be strong again". If you're religious, then of course feel the love of this magnificent universal power and drawl strength from that. And do some things you like to do to take your mind onto that joy, such as read a book, take a 5 minute walk, plant a few seeds in a pot, listen to some music and ....call a friend.
Just when i thought i know everythng to calcium, i found more infos from a website "Adoracalcium.com". it has an extensive list of ways to get your calcium absorption. and do's and don'ts. I leaned that chocolate lessens the absorption of calcium. :( i have been eating chocolate, nuts during my snack time. And get this, calcium lessens iron absorption, but needs iron to process calcium. So, you need to take iron 2 hours after you take calcium. (my doc told me i don't need iron cuz my lab work said i'm okay). but for the life of me, i look a bit too white and my undereye is not red enough and i can feel i need iron. So, i took one iron yesterday, and i feel my hands are warm and stronger and i feel good. I used to take iron when i get my period and i did pretty good until my doc told me not to take iron. so, i didn't these 2 months. yesterday, i listened to my body and now i know i do need some iron. Remember - iron is toxic if taken too much. so, listen to your body and don't take if you're feeling fine. I tell my daughters to taken it 5-7 days each month just to replenish a bit of what's lost.
So, check out that website on their calcium info, i found it to be the best source i've come across so far. tells you what to eat or not eat for maximum calcium benefits.
as for me, no more chocolates, nuts, etc. i'm still snacking on peanuts because i thnk it's a legume and a true nut, :)
ooops, typo, i mean, peanuts are legumes and Not a true nut. so i hope it's okay.l
also, i talked to my vitamin retailer, asking why they put calcium with iron along with 30 other vitamins in the multi-vita supplement, so if the calcium competes with the iron for body absorption, which wins?? they told me to take a no-iron multi along with my calcium pills, and then 2 hours later, take the iron with a bit of food. Yeah, really confusing. practically have to be a chemist/pharmicist to survive this calcium issue.
As i've learned lately, calcium should not be taken with iron as they compete for absorption. Tea also decreases your iron absorption from food. So, drink your tea from a glass, and cook with an iron skillet which will give you a bit of iron. If iron tablets bothers you, you'll just have to get it from food. you can find which foods are rich in iron from many websites. Through the years, after many brands of iron, I find the "easy iron" from Vitamin World or Puritan's Pride (same company, same product with different labels that's all; Puritan's costs 70% less !) to be non-irritable to my stomach so that's what i take. Puritan's Pride has a sales website that is even cheaper...strange, but who cares when the prices are so good (Puritansale.com).
I've made liver soup with ginger on my period - tire days and it's magical. But it is high in cholestrol so I don't do that unless I'm super tired on that day.
I also munch on oat cereal O's to get iron/vitamins when it's late at night and I'm hungry but don't want to eat junk/fatty foods. Plus, a few chunks of watermelon/cantelope and the tummy is happy.
p.s. I use pork liver, slice them thinish, marinade with soy sauce, corn starch and a dash of oil. boil some water (4 cups, add some ginger slices) put in the pork liver, as soon as the water boils, turn off heat, cover with lid and let it rest/cook for 5 minutes. drink a cup in the day, another at bedtime. You will feel better by morning. refrigerate remainder and drink it within 2 days. Depending on where you live, you might not find pork liver. I suppose beef liver is the only choice. I've never made the soup with beef liver. I imagine the taste to be too heavy. I'd just salt and pepper and flour the beef liver and pan fry it with carmelized onions on top. It taste good and even my kids love it (have not made it in years though). It's high in cholestrol. But if you need iron, then this is good, maybe twice a month you eat this and see how you feel.
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
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 =]
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.
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.
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!
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!
Here is what I found when I searched this which sounds a little ominous. Do you have different information on it?
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. Additionally, coral near Okinawa has absorbed relatively high amounts of lead and mercury, leading to concern that these unregulated supplements may be contaminated. Further, coral takes millennia to grow, leading to environmental concerns.
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:
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.
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!
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.
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
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
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 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 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!
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 =(
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.
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.
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?
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.
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!!!
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!
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