Calcium crisis! PTH Intact =142 H-E-L-P!!!!!

Mary_J and everybody else:

I'm a lot stressed, and a little defensive because I'm so tired.   I've had my dukes up non-stop.

My PCP who was originally a jewel, has turned into one of those unresponsive types, and I have been killing myself since my visit this week, trying to get the message about my calcium levels through to her. Calling, texting, (I am one of the few who have her cell number, but I probably won't be after this week). I hope my surgeon will call her, and let her know that this is nothing to play with.  She may be trying to get rid of me as a patient, since my insurance is of the public type (Medicare, Medicaid) due to disability, which is why I had this surgery in the first place - to get OFF disability! I took a year off from school -retraining to become an RD for bariatric patients- to get the extra skin issues addressed, and because of the nutritional crisis after my Mom died.  I was caregiver/responsible party for her last 6 months on this planet.  I got sloppy during that time, and I already knew my labs would suck.  We buried her in April and I had my labs drawn in May.  My situation right now is totally my fault, because I didn't look out for #1 well enough. I think many women are guilty of that, putting their own needs aside for someone else.  Last summer, after my labs came back, she had no problem setting me up for iron infusions.

I do have a surgeon visit coming up Monday, one of my last three as I will be 5 years out in February, so maybe I can get someone to light a fire under my PCP and Hemo, or perhaps, once I tell them what's going on, they will set me up for infusions there.  It's a 2 hour drive each way, but I have relatives there that I can probably stay with until the infusions are done.

I spoke with my surgeon's nurse this morning, and I may be checked in after I get there for testing and infusions.

The downside is I'll be away from home.  The upside is my bones won't look like lace curtains in three months. Leaching was already evident on my last DEXA.

I think that's worth it.

I also think I need to be looking for a malpractice attorney.

I have had two DEXA scans in my lifetime, my first baseline, and the one a couple months ago that revealed the osteopenia.

The one time I had a "normal" PTH was six months ago, PTH was 72, and while that's normal, it's not good, because it is the very last number in the reference range for normal.

Could it be menopause?  I am post-menopausal now, and I know that women lose bone mass at this time in their lives, because of the hormonal changes.

The great thing is, my rheumatologist (lupus & fibromyalgia) set me up with a medical membership at a great health spa connected to my city's largest hospital.  $55.00 a month for a membership that runs about $250.00 a month for regular members, and it is open to the public, not just hospital employees. Pre op it was just the warm water exercise pool, because of my weight and the water would make exercise easier on my knees, which still need to be fixed, but now can wait a little longer because of the weight loss.

I go 3-4 times a week, and I do work with the weight machines there now, and I have worked up to #30 on the lower body machines, #50 on upper body.  I'm a little lighter on the bottom with the squat machine, because it's uncomfortable - not much in the way of fat padding there, with the bars resting on my shoulders when I straighten my legs on the way up.

My goal in the gym was to not only get in some aerobic  exercise, but also build more muscle, so the plastic surgeon would have a nice base for my thighplasty.

Julie-

I have had a baseline, and one in 2012, which, along with lab results, officially made me osteopenic.  That's when the hemo did Reclast, last summer.

I allowed that before I knew biophosphonates were bad for DSers.  Had I known before hand, I would not have consented to it.

I have a surgeon visit Monday, one of my last three for my five-year follow, and I will ask her questions.  She is the only surgeon that does the DS in my state. The NUTS at my program are worthless when it comes to DS nutrition.

The most normal PTH I have had, and that was last year, was 72, which is very high normal.  It's the last number in the normal range.  I got it down to that number, when the PTH isssue first occurred, by doing both liquid and dry calcium.  I have been doing dry Cal/Mag/D, with 1:1 Cal/Mag and 50,000IU of Vit. D daily for a month prior to my draw.  My usual daily regimen calls for 8 Calcium citrate with D ( hospital recommendation) daily for 2400mg daily. I just went ahead and started doing the 50,000 D myself, since it seems to always come out low.

I have not had any other serum bone marker tests.  My PCP says the endo will probably do those.  It's good to know what to ask about, though.

Do you mind if I print this off and take it with me to my visit?  I think it provides very good starting points.  I'm almost 100% certain that this endo is *not* a Vitamin D specialist, because specialties are pee-poor where I live.  I would probably get better treatment in Carmel/Indianapolis.  It's the largest city in my state, and it's where I had my DS.  They are more likely to have seen cases like mine there, because that's where my surgeon is, and there are just more people there.  I will ask her for an endo recommendation on my visit Monday.  I'm considering moving to Indy, anyway.  I like it there, and there are better opportunities for jobs there, which will go a long way in helping me to get off disability, which is why I had this surgery in the first place!

Calcium at bedtime/middle of the night sounds like it might work.  I'll try it!

I actually don't go to be until the middle of the night sometimes.  Intractible insomnia, and I don't like sleeping pills.

Thank you, Crazeru!   I will adjust my schedule and see what happens.