My wife had a total thyroidectamy in January 2008 because of a papillary carcenoma, the surgeon removed all of the parathyroid glands as well. Since then the specialists have not been able to maintain her calcium levels for more than a week at a time & this has been with a minimum of two blood tests a week. All medical staff that we have talked with have said they have never seen anyone like my wife and after 4 months she is still no nearer to having a balanced calcium level. She has had a minimum of 10 full tetany attacks and around 150 minor attacks with virtually constant symptoms of tingling in the toe & fingers and fuzzyness in the lips and nose.
She has been taking vitamin d supplements & calcium carbonate tablets in varying degrees since January - the results either sending her calcium levels either too high or too low and on average ends up spending 10 days a month in hospital because of hyper or hypocalcemia, usually the latter.
I can't believe she's the only person in the world to suffer from this - is there someone out there that has been through this and come out the other side? If so how did your consultants solve the problem?
Sorry to hear your wife is having such a hard time. I also lost 2 parathyroids during TT 2 years ago. My calcium levels just recently got where they are stable. I take 2000mg of calcium along with 1000ic VitD. daily. The body can only absorb 5oomg at a time so there is no point taking a larger dose at one time. I try taking 500 every 3or 4 hours throughout the day, and no sooner than 4 hours after synthroid as it affects the absorption of synthroid. Good luck.
Have you tried this site www.hpth.org In case the link doesn't work it's the hypoparathyroid group do a google search and it is one of the first to come up. It is very unusual to have all 4 parathyroids out , and the hpth group has a lot of information and support.
I feel very sorry for you and your wife, it must be a very distressing thing to happen.
All the best.
im was 35 when i started to go to hospital complain like your wife iended up in the hospital to be told i have hypothyriod and i was put under general med it is and still is an night mare im now going to see endocrinologist tosee if i can be dealt with . times i can feel my lips in night it my hands my feet my joints my lags muscle i know how shefeel it wrong and they dont know jack
There is a website and a community devoted to the problem of hypoparathyroidism. They hold yearly national conferences with invited researchers who are working on treatments. Try googling hypoparathyroidism, and you're sure to find it. They have a useful brochure your wife can print out and carry with her in case she needs immediate medical attention for her condition. Some people are born with no parathyroids, some like your wife suffer post-surgical hypoparathyroidism. I had some parathyroid damage after a total thyroidectomy in 2006, and experienced full tetany. At one point I was taking 8,000 mg of calcium a day, plus rocaltrol and other supplements. Because I still had some parathyroid function, I was able to reduce this amount over time; now I take 2,000 mg calcium with added vit. D, and feel fine (I'm telling this to let people know that it is possible to kick-start the parathyroids even after a year of low- to no function). Good luck.
Here's a group, perhaps the one redheadaussie is referring to: hypoparathyroidism.org
You have my sympathy. The mere fact that if your wife takes too much calcium she gets hyper is the tricky part.
I had visits to the er and was re-hospitalized over this issue after a parathyroidectomy/total thyroidectomy. I do have glands remaining but they took a long time to come back to work (I still question whether that's really happening).
I realize that’s not your story but for what it’s worth: At some point before the glands got back to work, my body did eventually regulate itself to the calcium I was taking in. In other words it did adjust to and use the calcium whether my glands were present or not (your wife’s case).
I took and continue to take calcium, calcitrol (via a script) and magnesium (occasionally).
May I ask, what kind of calcium is she taking? I got/get better results by taking straight calcium tablets, along with the others.
I still take a lot of calcium myself. I think it’s always going to be an issue for me. My original issue was hyper…, due to a tumor on one of the parathyroid glands. But I haven’t felt any of those symptoms since before surgery, only hypo ones now. So again, your wife has my sympathy in that regard.
For a long time I felt like the only one who had these issues (it used to make me cry; alone and in front of med staff, who told me they never saw this before(?)). I had to search out a lot of info about this. As I come back across some of what I’d found, I will post it.
(Honestly, I’m crying now because I know some of what your wife is experiencing).
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