Everyone knows calcium - good for the bones. Turns out that is a very small part of calcium’s role in our health. Calcium is so important to our bodies that it actually has its own dedicated regulatory system, the parathyroid glands which do nothing except make sure there is the right amount of calcium available in your blood.
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The following is an excerpt from Dr. Norman’s Parathyroid.com website
First a word about CALCIUM and what it does in our bodies. We use many elements in our bodies to perform all the different functions of life. Calcium is essential to life, and is used primarily for three things:
1. To provide the electrical energy for our nervous system.
2. To provide the electrical energy for our muscular system.
3. To provide strength to our skeletal system
Thus, calcium is the most closely regulated element in our bodies. In fact, calcium is the ONLY element / mineral that has its own regulatory system (the parathyroid glands).
Dr. Norman’s web site is focused on hypErparathyroidism. I have the opposite, hypOparathyroidism, but he has the best explanations of how the gland works I’ve found. Most cases of hypoparathyroidism are caused by damage during neck surgery; in my case it was thyroid surgery. When I was first searching for information on this disease I came across a page on the Mayo Clinic, since removed, that said “this will ruin the rest of your life.” I thought they were exaggerating at the time, they weren’t.
My journey into chronic illness began about 20 years ago with Graves disease. I’m one of the many people that have almost never had health insurance. I never trusted traditional medicine and I had good reasons for my apprehension. As a child I had problems with my hands peeling and some brilliant doctor told me that I was allergic to water. Even as a 9 year old I knew that was ridiculous. While I appreciated the excuse to get out of doing the dishes it left an impression about western medicine that I have never quite lost.
Graves disease caused my metabolism to run at full speed all the time but that’s a story for another time. The result was that I had surgery to remove most of the defective thyroid gland. I had no insurance but managed to find a program which got me health care, just not good health care. A simple surgery that was supposed to last 3 hours went 5 and when I woke up I was told that my parathyroid glands had failed. I was not really told what that meant except that my overnight stay had turned into a five day stay at the hospital. I was also told that this would be a temporary problem; the parathyroid function should come back on its own. It didn’t.
Initially I was so much better because my thyroid was no longer extremely hyperactive. I gained weight and muscle tone, but as the years crept along I started getting less and less functional. I saw doctors from time to time, not often. Each encounter I would bring up the botched surgery and the failed parathyroid glands. All I ever got in return was a blank stare and no comment. I went to see someone about my inability to walk without a limp, and I was told I had “a touch of arthritis”, normal for someone my age. I was 35. Slowly, slowly I became less and less functional.
Carpel tunnel was the first easily identifiable problem. After 20 years of computer work combined with bad ergonomics it didn’t seem unusual to have problems with my hands. I found a great chiropractor who helped me stop limping and regain some functionality in my hands, at least enough to keep typing, but I never got better from anything, new problems would come up then they were a problem forever. Everything came to a head in 2006. I took on a large volunteer project at the same time I was helping my husband start a new business. I was the exhibits coordinator for the first Yearly Kos convention. I loved it, still the best thing I have ever done, but by the time the convention came around my body had begun falling apart and at the convention I could really not function much at all. I still feel like I owe Nolan an apology for being a total flake on site. When I got home from Vegas I had only partial mobility of my right shoulder and within a short period of time it froze almost totally. I couldn’t move my arm more than 30 degrees and any sudden movement would cause serious shooting nerve pain. Sleep became almost impossible. It took 6 months of deep tissue massage to get it to move again. I’ve never regained my previous level of mobility.
I didn’t understand why I was having all these problems. The consequences of low PTH (parathyroid hormone) were never explained and all the websites list variations on the same symptoms for Hypoparathyroidism:
Abdominal pain
Brittle nails
Cataracts
Dry hair
Dry scaly skin
Muscle cramps
Muscle spasms called tetany (can affect the larynx, causing breathing difficulties,) pain in the face, legs, and feet
Tingling lips, fingers, and toes
Weakened tooth enamel (in children)
Additional symptoms may include:
Decreased consciousness
Delayed or absent tooth formation
Hand or foot spasms
Painful menstruation
Oh you say, none of that sounds so bad. The worst on the list seems to be muscle cramps and we’ve all had muscle cramps, right? Wrong, imagine having a muscle cramp for 10 years then imagine the damage that it might cause. Imagine having any and each muscle that is used cramp/twitch for an extended time after use. A cramp or a twitch here and there no big deal, but cramps and twitches that don’t go away, ever, is overwhelming and damaging to the muscles. Without massage I would curl into a little ball and never be able to move again.
Where does it say that on the Mayo Clinic web site?
A better symptom list would be this:
Stress: A big problem. When you get stressed you will stop sleeping which causes all muscle your problems to be worse. Not to mention that stress causes you to contract your muscles which feed the problem spasm/twitching cycle.
Focus: You will no longer be able to focus on complex problems or be able to come up with complex solutions. Just reading a long blog post may take a few days to get through the whole thing.
Memory: Gone, just gone. You won’t necessarily lose your intelligence but you will have a hard time remembering what you were doing two minutes ago. Get used to using calendar reminders for appointments and remember to set the timer when you put water on to boiling or you will forget.
Initiative: It is very hard to initiate anything. Just setting up an appointment is almost more than you will be able to handle. It makes no difference if it is business or personal. If you are really good you may just barely manage to get done that which is absolutely mandatory.
Muscle Cramps and Twitches: Each time you use any muscle it will tighten up just a bit and the next time used it tightens more with no relief, ever. It’s like there is an on (contract) but no off (release) switch. Deep tissue massage may help but it will leave you in great pain, without it you may not be able to move.
Stimulus: Especially after 6 pm will render sleep a distant dream. Social gatherings are mostly out of the questions as the stimulus will overload your system. It may exhaust you to be around more than one or two people at a time even during the middle of the day.
That is a list that would have actually helped me prepare to deal with this disease. There is no treatment outside of taking calcium and vitamin D. There is no replacement for PTH (parathyroid hormone) and if you take too much calcium it could result in kidney stones and/or kidney disease. I read Kitsap Rivers diaries, I do not want that! All the research on this disease is coming from osteoporosis research. Nothing worth noting yet. Besides because I am pre-menopausal I am not eligible for the studies.
I move from crisis to crisis. The minute I get a little better I use my body and the cycle repeats. Things are a little better since I started on pain meds a few months ago but only by degree. In fact the first month on drugs I went on a gardening bender and was in way more pain because I was taking pain pills, figures.
The most disconcerting bit of this rare disease is my difficulty in processing new information. The best way I can describe the sensations is that it’s like being blinded by light, as if all the neurons fired at the same time. Sometimes I literally shake my head and close my eyes when presented with something new or complex. I can learn but I sort of have to sneak up on the new information then take it in small chunks over a long period of time.
Thanks for reading my story. I would like to close with a little advice. If your calcium level fluctuates or is outside of “normal” even by a little do not assume it is an anomaly. Do not let the Dr. tell you to wait 6 months then test again, you have a problem now. If you need to have thyroid surgery (or any neck surgery) make sure the surgeon does at least 50 surgeries just like it per year. Ask and make them prove it or find another surgeon. It is a simple operation but tricky. You do not want what I have!
Last but not least if you are taking calcium make sure you are also taking a good quality vitamin D3 at the same time. Calcium cannot be absorbed without the D3. Oh yea, Tums are not a good source of calcium.