Tetany

In the past six weeks or so, I’ve endured still another bout of Tetany, not one of my favorite states of being!

I’ve suffered with Tetany, and the management of it, for all my adult life. The first time after a total Thyroidectomy. Then, it got much worse after they took out my last parathyroid glad, (ten years later). Because it looked suspiciously like cancer, they were unable to ‘implant’ some of it in my arm, as is routine, so you don't have to live your life in this condition.

Tetany symptoms includes: spasms of the hands and feet, muscle pain, a ‘fuzzy’ feeling in my mouth, cognitive problems (slow thinking, unable to make decisions), and when it’s bad, Laryngospasms (spasm of the larynx, the voice box -- it feels like someone is pressing both their thumbs into the front of your neck. Eventually, you start making weird noises when you inhale.)

It’s not like I’m unfamiliar with either the problem or the treatment of Tetany. But it DID kinda take me by surprise because for the past few years, I’ve actually been suffering from HIGH blood calcium (Hypercalcemia), probably caused, this time (the first time it was that darned parathyroid gland!), by some left behind after that surgery, parathyroid tissue that slowly regrew.

The problem with this ‘regrown’ parathyroid tissue (and the docs actually haven’t been able to FIND it), is that it’s not reliable. It tends to work is ‘spurts’. I’d almost rather have NO parathyroid; it probably would be easier to manage.

The problems THIS TIME were:

1) I did not have the necessary medications in the house, well I had some of them, but they were outdated by 5 years, so I had no idea of their potency. (I won't make THAT mistake again.)

2) The NEXT problem was that I went to the Emergency Room to get prescriptions for the needed DHT, Calcium, and Magnesium. (I hadn’t been to an ER in years!) I told the nurse and the physician why I was there and that I was suffering from Tetany.

The doctor DID NOT order an ionized blood calcium!!! This would be the FIRST diagnostic test to diagnose Tetany. He did a standard blood calcium, which was actually a little high – from all the calcium I had been taking in previous days, no doubt. When you have Tetany, you can have a normal or HIGH blood calcium, and a LOW ionized blood calcium.

Now, no one at the ER informed me of the test results or I would have requested the needed test. I didn’t even see the doc again, it might have been different if the doctor had seen me and given me the test results, talked to me! But, a nurse came in with the prescriptions for calcium and magnesium. I did not SEE the lab results until I was being discharged and actually could think clearly enough to ask for a copy.

However, I felt so bad, and was worried about getting home I actually got lost on the FAMILIAR public bus system and didn't get home till 10P. Because of my cognitive state, I actually sat at the wrong bus stop for an hour. I didn’t actually review the labs until the next day.

Silly me! I thought someone in the ER at Scripps/Mercy Hospital would be competent enough to look Tetany up in reference books, on the computer, or call my doc, (which I requested multiple times, at multiple levels)! The fact that I assumed the staff's competence clearly shows my diminished cognitive state. Obviously, the doc saw that normal blood calcium, and wrote me off as a hypochondriac. I was left to get home while suffering moderate, undiagnosed, Tetany...

3) Three days later, (after about 6 days of medications) I saw my Endocrinologist. She’s a terrific Endocrinologist; I’ve been seeing her about 5 years, mainly for Diabetes2 and lately, Hypercalcemia. I see her in a ‘clinic’ setting and put up with ‘residents’ in order to see her, as I feel she’s that good.

However, she had never actually seen me having Tetany before (though at times, over the years, I’d pointed out hand spasms – and there had been some VERY LOW ionized calciums). And, I guess, she didn’t have access to my old records. AND, by the time of this appointment, I was having NO SYMPTOMS (plus, it can come and go rather quickly – and be in all stages). So, there I was, feeling the usual ‘post’ Tetany, ‘been run over by a truck’ state, but NOT Tetany.

She told me that the labs at the ER had been more or less normal. And she ordered a whole bunch of other labs (what a waste of money, when done while not exhibiting symptoms). She inferred that I was not having Tetany (well of course, not at that exact time!), and that she was seeking ‘the cause’ of my ‘cramps’ (I wasn’t having cramps! I was having Tetany!).

Sure enough, a few days later she called with the lab results: mostly normal. And she too, treated me like I was a nut! Gave me directions for the ‘Tetany’ meds; extremely small doses.

I followed her directions, and sure enough, in just a few days, was having moderate Tetany AGAIN. So “I” increased the meds, and I started feeling better in a few days. Still, it remains ‘iffy’, it comes & goes (but doesn't stay away), kinda like that aberrant parathyroid tissue, wherever it is.

I don't really 'blame' her; like most Endocrinoligists, she tends to focus on Diabetes, and Thyroid problems (MUCH more common). But I thought she knew me better than that by now...

I do get tired and frustrated when I'm so very ill, AND having to be my own doc & advocate because my 'real docs' don't believe me and/or won't think outside the box, or spend the time to TALK to me, or review the extensive records I've provided.

Believe me, I KNOW Tetany. I spent post-surgical months living with tubes in both arms. Have been treated (before DHT) in ER’s in two states for it with regularity (surprised the hell out of many ER's!) Have lived with it, tried to manage it, for the past 25 years!

Why, oh why, isn't there a Medical Specialty that focuses only on 'Rare and Unusual' conditions??? Boy, I'd fit right into such a medical practice!

For some excellent info on Tetany...