No matter where you fall in the spectrum on how we can improve and fix our broken healthcare system in this country, most will agree that there is a problem. I have thought for a long time and it has been brought home to me so much more these last two years that the biggest problem is that we have taken so much of the decision making off of the doctors. Again, there is much to this discussion but I am going to be very narrowly focused on this in this post. This post will focus on my issues and you can glean from that how this effects our system in a broader sense.
For those who have been here a while, you know that two weeks after running the 2016 NYCM I had my thyroid removed. This not only left me without a thyroid, but my parathyroid glands were damaged leaving me also with hypoparathyroidism. I was led to believe prior to surgery that this very infrequent possibility would really just be a minor inconvenience of having to take calcium supplements.
That is both right and wrong.
Wrong – It is not a minor blip.
Right…. Yes, my body no longer produces the parathyroid hormone (PTH), thereby causing my body to be unable to regulate it’s calcium. PTH also controls the level of phosphorus and has a role in the production of the active form of vitamin D. All of these activities are required to maintain calcium balance which does so much more than give you good teeth and strong bones.
Here is a list of common complications
“Tingling of the lips and hands (due to muscle spasms and overactive nerves), muscle cramps, and pain in face, legs, feet Dry hair, brittle nails, dry skin, and weakened tooth enamel Abdomen pain, muscle pain, constant headaches Cataracts, heart arrhythmia, peaked QT waves (shown on EKG) Tetany (muscle spasms) of trachea/larynx, causing breathing difficulties Kidney stones and kidney failure due to high phosphorous. Deafness and hearing loss is connected to hypoparathyroidism due to a defective receptor on the kidneys Irritability, confusion, dementia, hallucinations. Convulsions or seizures Sleep apnea and insomnia Consciousness decreased Learning disabilities and behavioral disabilities (ADD, etc.) Hypocalcemia and hyperphosphatemia “
Now I can tell you off the bat that I’ve had a decent amount of these. I’ve been lucky not to have any of the major ones (yet), although at my last eye exam she did see the beginning of cataracts (I’m not even 50 yet). Now the reason I think that I have been so lucky not to have the kidney issues is because within a year of my surgery, I was seeing a doctor in NYC who specializes in this disorder. If not, I would bet that I would be having issues.
Prior to seeing this specialist, I saw another doctor who only looked at the calcium blood levels. They were great. Right in the normal zone. The problem was that he never checked the output. The first thing this doctor did was order a 24- hour urine test. My results were a 578. To be clear anything over 300 is bad. With these results, we worked on lowering this number. In order to do this, we had to reduce my calcium supplements and prescription medications. Mission accomplished.
Now the flip side to this….. In order to bring down the urine calcium output, I had to bring down the input. Makes sense. BUT that then also reduces my actual blood calcium levels. I live in a state of perpetually low calcium. 8.5 is considered the low end of normal. My last blood drawl, I was at 8. Living on the edge that’s what I do.
So my doctors and I decided that quality of life was suffering due to this constant state of low calcium…… Muscle spasm’s, muscle cramps, dry skin, napping almost daily, brain fog like you would not believe and more. I’ve said to my family that I make this look easy. On a daily basis, I just go about my business getting done what needs to get done but they don’t see the cost…..
Some mornings, needing to use the nightstand to get out of bed like a grandma. Afternoons where it is all I can do to push through till I can literally close my eyes. And I’m not talking about, “Oh I’m tired I wish I could nap” feeling. I’m talking about, “if I don’t rest for at least 15 minutes I’m going to fall down” feeling. There is a lot to this crap that just becomes part of your daily life, so there really is no need to talk about it. Some days I use the grit that gets me to the finish line of a marathon just to make it to the end of the day. You do what you’ve got to do.
I also firmly with no proof believe that being an athlete helped me. It helped me because I was already in tune to my body. Learning to listen to the signs when training that I could tell when my body needed extra calcium and adjusted accordingly. It’s a guessing game, because there is no at home monitoring system like a diabetic has with insulin levels. Because of this, I have been able to adjust and keep myself from crashing which for many requires a trip to emergency room to get IV.
I know that for a whole host of reasons, I am very lucky. Yet, my treatment plan to add Natpara is not mine and my doctors to make apparently. Insurance has denied it because I do not meet their criteria. Even though my doctor and I think I do.
So because apparently this treatment option is very costly, my doctor and I need to jump through hoops to prove why it is necessary. I feel like the monkey in the middle. It is wrong. Wrong. Wrong. So now it’s time to jump through hoops with my doctors help to justify to someone why I should be able to have the treatment plan that my doctor and I agree is the right course of action for me.
I wonder at what point in our country, did we stop letting doctors and patients make decisions that were best for the patient and not the bottom line of an insurance company.