'A Patient Voice' Community

hello, MW --

i did some quickie internet skipping-around to learn about hypocalcemia. i am so sorry you have to cope with this condition. i am not a medical person (see PS1), but, greatly simplified, here is how i understand what i have read.

the amt of calcium in the body is regulated by a hormone secreted by the parathyroid glands. because these glands lie very near to the thyroid, surgery to remove the thyroid sometimes damages them, compromising their ability to produce parathyroid hormone; this condition is called hypoparathyroidism (PS2, PS3). this leads to hypocalcemia, a deficiency of calcium in the body for which permanent treatment -- primarily, calcium supplements -- is required. hypocalcemia can be a life-threatening condition if not properly controlled (PS4).

one of the articles that seemed very credible to me, as a layperson, suggests that the effect of hypocalcemia on pregnancy is not predictable and therefore that the most significant task is to keep calcium levels within a safe range by close monitoring and adjustments in the amt of supplemental calcium and vitamin D (which helps the body to absorb calcium).

i stumbled across one website that looks as if it might be very helpful to you if you do not already know about it -- for an organization called the hypoparathyroidism association (HPTH, PS5), http://www.hpth.org/index.cfm?pv=hm . to participate in their forum, you have to be a member ($25/yr), but you can read the inquiries and responses without being a member. take a look at http://www.hpth.org/index.cfm?pv=Fm ; unfortunately, if there is a way to search for a keyword (such as "hypocalcemia"), i can't figure it out.

nonetheless, i did a quick skim of the topics, and altho i did not see anything on hypocalcemia, i found five threads on hypoparathyroidism and pregnancy/breastfeeding! take a look at --

-- http://www.hpth.org/index.cfm?pv=FM&FM=FD&FRID=208 ,

-- http://www.hpth.org/index.cfm?pv=FM&FM=FD&FRID=484 ,

-- http://www.hpth.org/index.cfm?pv=FM&FM=FD&FRID=609 ,

-- http://www.hpth.org/index.cfm?pv=FM&FM=FD&FRID=714 , and

-- http://www.hpth.org/index.cfm?pv=FM&FM=FD&FRID=735 , re breastfeeding.

in addition, and this is astonishing to me, but the NIH genetic and rare diseases info center will apparently answer individual Qs about certain conditions, hypocalcemia among them. go to http://rarediseases.info.nih.gov/GARD/EmailForm.aspx?PageID=4 .

finally, if you have not already done so, you might want to take a look, or post, at one or more of the webMD pregnancy exchanges; these are listed at http://exchanges.webmd.com/webmd-exchanges/pregnancy-exchanges .

i hope this helps.

-- susie margaret

PS1 -- correction, amendment, or replacement of any inaccuracies are welcome, appreciated, and indeed begged for!

PS2 -- info on hypoparathyroidism, including a list of support groups and resources for more info, is at http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Hypoparathyroidism .

PS3 -- the website of the hypoparathyroidism association has info on clinical trials with respect to treatment and other aspects of hypoparathyroidism at http://www.hpth.org/index.cfm?pv=ph&ph=ps . a more extensive list of relevant clinical trials is at http://clinicaltrials.gov/ct2/results?term=hypoparathyroidism ; it also shows whether the researchers are still recruiting volunteers.

PS4 -- a list of clinical trials with respect to treatment and other aspects of hypocalcemia is at http://clinicaltrials.gov/search/open/condition=%22Hypocalcemia%22 ; it also shows whether the researchers are still recruiting volunteers.

PS5 -- the spring, 2010, newsletter of the HPTH is at http://www.hpth.org/newsletters/Spring%202010%20Newsletter.pdf . it gives a lot of info about this organization that i did not find elsewhere on its website.

wow, your a saint. thank you for taking the time , thank you so much

I also have the same problem. My thyroid was removed 3 years ago and my parathyroid was damaged. At present, I am taking calcium tablets (18 tablets a day) but still, I am experiencing bone pain, muscle cramps, confusion, lost of concentration, difficulty in sleeping again when awakened at night. My only reason of wanting to live longer is to take care of my sons and I'm just taking my strength from God and from my sons. I understand what you feel. With regards to your desire of having more kids, I think it's not safe for both of you because calcium is very important in pregnancy.

OMG, I finally found someone else. The doctors here have never had a case like mine or seen one. I had a total thyroidectomy because of cancer and a day later went into spasm seizures so badly I was lucky to live. I went on to have six more and spent a month in the hospital before they found the right combo of meds and now I have a no dairy, very low sodium and low,low phosphorus diet. Still they need to lower the calcium I'm taking so I don't develope kidney problems and I'm sooooooooo scared. I have two little girls who watched me almost die three times. It comes on so fast. I have about 7 minutes from the onset to full paralysis and I'm always afraid to be alone or go anywhere on my own with the girls. It's horrible way to live as I'm sure you know. Do your parathyroid glands work at all? mine are completely gone. I saw you wrote this 5 months ago, any advice?

OMG! I have the same problem! I had my thyroid removed a few years ago and I have been screwed ever since. I was told that the dr removed my parathyorid gland "by accident" so now I have severe hand cramps, tingling in hands and face. Face twitching and it hurts! I try to deal with it by taking tyroid pills and calcium but it still returns at least once a week. I think I might try to see if I can qualify for disability. This is effecting my work and my life. As I type right now my hands are cramping up. I have had a cold for the past few days and my hands have been cramping and becoming stiff. Do you know how a Barbie dolls hands are shaped? Well I look like I am holding my hands like a barbie. I feel for you have you gotten any relief?

OMG me too. It's terrible! I get terrible hand cramps and muscle spasms on my face. It is so bad, confusion, lost of concentration, I feel so stupid some days at work. It sometimes hurts REALY bad. I'm tired of my hands cramping up for sometimes hours and my face and eyes twitching. DO you know if this is considered a disability? It is effecting my job

I am also in the same boat, I am looking on line for some help. This is terrible. I hate living like this. I have the same symptoms as you. The worst for me is the hand spasms and cramping. Also my face twitches and tingles. I need some relief! I am wondering if this is considered as a disability. It is effecting my work.

Welcome, erriort!

I would encourage you to speak to a lawyer who specializes in disability. He or she will be able to gather information from you and discuss whether or not it would/could be considered a disability.

Many times initial consultations can be low cost or free, so perhaps it would be an option?

Keep us updated,

Byroney

I am experiencing the same thing from the thyroidectomy that I had done 2 1/2 weeks ago! I live in constant fear of being incapacitated by the full body tetany that has engulfed me twice (which was 2 time too many!!!) the terror of being locked up your own body is excrutiating, and it happens so fast! What I don't understand is now that I'm home and living wth the possibility that my parathyroids may never "wake up" again and I suffer each day wondering if it wlll take me over again-can I find any information on actually living wth hypocalcemia? Not really! I don't need a definition of what it is, I already know what it is, what I need is a comprehensive break down of all the foods out there and how much calcium, magnesium and phosphorus are in them. My hypocalcemia had been complicated by my body refusing to absorb the most commonly used calcium after thyroid surgery, calcium carbonate, so it took them 4 days after the surgery to fgure out that I needed to be taking calcium gluconate. I was very lucky that my surgeon is a fantastic surgeon as well as just a really good person, because usually you are sent home after 2 days, and she hd been told by an endocrinologist that the levels of calcium I was exhibiting were safe to send me home on-she disagreed and kept me in the hospital, which I am so grateful for, because if she had sent me home I would have had my first episode in front of my kids and husband without them knowing what to do! So I'm finally home-and how do I go to sleep? How do I drive a car? How can I be left alone? My doctors feel like my levels have been stabilized, but yesterday the tip of my left pointer finger went all prickly and tingly so I downed 2400mg of calcium and a bottle of milk-in 30min my and toes on the left side of my body started to tingle and it was all I could do not to panic-downed another 1000mg and prayed-my other episodes happened within 15 minutes of both of my hands and feet starting to tingle-thankfully this massive dose apparently fended off the attack. How do I go back to my normal life? If anybody out there knows of a truly comprehensive book on the nutrition in all foods (including ALL their vitamins and minerals) I would really appreciate having the name of it, because the calcium in foods is so much more easily absorbed and used by the body! Also, any tips on how you've managed to function with this disease would be invaluable! Thanks!!!

hello, R --

i don't suffer from hypocalcemia, but i wanted to send my sympathy to you; it sounds absolutely awful.

i hope some others will see your post; i apologize that it took me so long to happen upon it.

-- susie margaret

I had my thyroid removed about 6 years ago and have been hypocalcemic since. I ended up in the hospital for a few days post-op because of chest pains receiving IV calcium. It took a few months but I started to recover pretty well. I can't say that I feel the way I did before my surgery, but am quite functional. My doctor and I are still making changes with my meds. I take citrical, 2 pills twice a day, and calcitriol .5 in the am and .25 in the pm. I also take a vitamin B complex, it seems to make me feel better. I have been able to lower my thyroid meds since I have been spacing it at least 3 hours apart from the calcium. It has been a challenge. I got approval to try the kirkland brand of calcium citrate, so we'll see how that goes. Hang in there! Let me know how you're doing.

Hi,
I see that you posted this 11 months ago but I am having the same problem and wonder how you are doing? I had my thyroid out in October of this past year and after I got home I had noticed the tingle in hands and legs. I had no idea what it was so I ignored it. Long story short I ended up in a hospital for a week and had no idea how I got there. Since then I have been hospitalized 7 times. My kids have had to call 911 3 times for me. I have had a hard time finding a doctor that can really help me. The episodes come on so fast I can't control them and it's almost like I am in a fish bowl. I can't understand what is going on. Any help we can give each other would be great.

Thankfully I have not had to be re-hospitalized, but I have had blood draws at least once a week for the past 4 months-I hd my surgery in November of last year, and my fantastic surgeon realized quickly that the calcium they had put me on was not being absorbed. She put me on calcium gluconate instead of the calcium carbonate that they usually put you on because te body absorbs it SO muh easier! Also, what thyroid meds are you on? My endocrinologist had to switch me to Synthroid-I'm on 225 mcg now...I have to take my Synthroid very early in the morning (4:30) and then begin my regular pills and calcium doses at noon because if I don't the calcium interfers with how my body absorbs the Snthroid. My TSH hd jumped to 118 (high is only supposed to be 4.82) because of how I was taking my calcium but between my taking the Synthroid now, being very strict as to when and how I take my calcium and taking 1mcg of Calcitriol twice daily with a dose of my calcium (Calcitriol is an already activated Vit D-prescription strength-don't have to be in the sun for it to be activated and REALLYhelps your body absorb the calcium) I haven't had any more instances of tetany-how many mg of calcium ae you on? I'm on 3500 mg....

I have chronic hypocalcemia also and had one kid with it and am pregnant again currently it does not effect the baby but u usually have to increase ur calcium intake along with ur prenatal vitamins