I finally found a PCP that "gets it!"

My uro did NOT send me to a Nephrologist.  He said that they are for diseased kidneys, not the stones harbored therein.  Oh, well.

I was alsotold that MANY of his stones patients are bypass patients and probably all of them have oxalate stones.

I had the same procedure, minus the stent.  A bunch of stones were blasted and pulled out of there.  But, on a recent scan, stones were observed. 


I already know that I won't take Fosamax (bisphosphate) drugs for osteopenis or osteoporosis, and Reclast is on my list of things I am doing my best to avoid.  I want to check out all the things on this list   www.webmd.com/osteoporosis/tc/osteoporosis-medications  and start with the least scary:

Medicines for treatment and prevention

Medicines used to prevent or treat osteoporosis include:

• Bisphosphonates, such as alendronate (Fosamax), ibandronate (Boniva), risedronate (Actonel), and zoledronic acid (Reclast), which slow the rate of bone thinning and can lead to increased bone density. These medicines may be used in men and women.

  Osteoporosis: Should I Take Bisphosphonate Medicines?

• Raloxifene (Evista), a selective estrogen receptor modulator (SERM), which is used only in women. Raloxifene slows bone thinning and causes some increase in bone thickness.¹¹
• Calcitonin (Calcimar or Miacalcin), a naturally occurring hormone that helps regulate calcium levels in your body and is part of the bone-building process. When taken by shot or nasal spray, it slows the rate of bone thinning. Calcitonin also relieves pain caused by spinal compression fractures. Calcitonin is used in men and women.
• Parathyroid hormone (teriparatide [Forteo]), used for the treatment of men and postmenopausal women with severe osteoporosis who are at high risk for bone fracture. It is given by injection.
• Denosumab (Prolia), which is used to treat women who are past menopause and who are at high risk for bone fracture. It works by slowing bone thinning, so bone is able to become stronger. It is given by injection, usually every 6 months.

Hormone therapy

Hormone therapy for osteoporosis in women includes:

• Estrogen. Estrogen without progestin (estrogen replacement therapy, or ERT) may be used to treat osteoporosis in women who have gone through menopause and do not have a uterus. Because taking estrogen alone increases the risk for cancer of the lining of the uterus (endometrial cancer), ERT is only used if a woman has had her uterus removed (hysterectomy).
• Estrogen and progestin. In rare cases, the combination of estrogen and progestin (hormone replacement therapy, or HRT) is recommended for women who have osteoporosis.

Freudian slip...I don't know WHAT I was thinking of when I wrote "osteopenis."

 Thanks for this synopsis of osteo treatments, Sue.    I am particularly interested in the Calcitonin.   I've not done huge amounts of research about this, but I seem to recall that the Calcitonon is showing some good results.

My mom used mialcalin (SP?) many years ago - she died in 1998, so she was on it for about 8 - 10 years before that.  She really didn't have much success with it though but it was the only thing she could take.  She had severe reflux, so she couldn't take any of the pills and non of the IV's were available them.  She also couldn't take HRT due to heart disease.

I don't know if it was just because her bones were just so bad and beyond help, but the mialcalin really didnt' help her.  I didn't know enough about Osteoporosis back then to take her to a specialist, so she was just treated by her internist. I wish I knew to take her to an Endocrinologist, they would have put her on high doses on D and calcium.   She was on high doses of steroids due to severe asthma and emphysema plus she was in a wheelchair for a degenerating spine, so she got absolutely no exercise - so her bones had no chance.

My allergist also told me that you cant' have any sinus or allergy problems to use this. In order
for this to work, you need totally open sinus passages and if you in the least bit congested,
you won't get the necessary medication

I am not sure why you were told that nephrologist don't deal with stones, they do all the time.  They also don't only deal with diseased kidneys.  They are specialists for high blood pressure which can lead to kidney disease disease. Many years ago, I saw him and another one for my uncontrollable high blood pressure and my kidneys were perfectly fine at the time and other than my stones they still are.  they deal with any disorder dealing with the kidneys.  Urologists operate on the kidneys, ureters and bladder and the nephrologists are the practitioners.

Yes, most stones are cause by oxylates but they don't have to be.  They can be caused by uric acid, chronic infection, something caused cystine which is rare but a genetic type of stones, and test for the PH of your urine because being dehydrated can also cause stones as well as severeal vitamins and minerals - magnesium, ammonia, potassium, sodium, phosphorus, calcium, calcium oxylates or vitamin D.  I can't remember the other stuff.  The website litholink.com has an enormous amount of information and if you go to the physician section you can see the report that is sent to generated - it has tons of information to help prevent stones.

When I had my procedure, my urologist blasted my stones and she said it was too dangerous to try to pull out any stones.  So, she just blasted them all to tiny little microscopic pieces.  If your stones were pulled out, did they send them out to be tested? I would hope so, then you would know for sure what they are made of, you cant just assume they are oxylates.  Yes, that is the most common but not always.  I wish they could have gotten my actual stones but they were obstructing my ureters, so they couldn't pull them out.  Maybe this surgery in October, they can get an actual stone from the kidney.

What do you have against Reclast?  I was told that is one of the most effective treatments and the fact that it is only once per year and only takes 20 minutes, sounds great to me.  I would never consider any of the pills since they have high risk for ulcers.  My mom used the miacalcin before she died - she had osteoporsis in her 50's - really young too. She was on major steroids due to severe asthma and emphysema which ultimately killed her.  I don't think the maicalin really did much.  From what my allergist told me, anyone with any type of allergies or sinus troubles should avoid since it needs to have full access to your sinus caveties to work and if you have any nasal congestion, it wont work.  So, for me that is out.  I recently heard boniva came out with an IV but 4 times per year, not sure if it is any better than the reclast.  I know many on Reclast and they really like it and my Endo has had alot of success with it.

Hormone replacement therapy has high risk for blood clots, so I wouldn't do that - I have clogged arteries in carotids and coronary arteries.

Julie, if you have menstrual migraines, typically supplementing estrogen during your period will help reduce or eliminate them.  Menstrual migraines are caused from estrogen withdrawal.  No withdrawal, no migraines. 

Basically, they just slap a patch on you for a week each month.  Could help with the osteo issues as well.  Estrogen is well known to help stop bone loss. 

 My doctor put me on low estradiol, and oh my goodness it made them so much worse!    BUT - with low-estradiol, you go OFF during your period, so I wonder if trying the reverse might help?   I'm pretty sure I'm estrogen dominant, btw.

I have always been estrogen dominant too (I don't get migraines anymore - had a hysterectomy and never had one again) but you can supplement with progesterone to combat that.  HOWEVER, in some women, progesterone makes it worse.

YES, the cyclic low estradiol is the WORST thing you can do.  If you add in estrogen, and then take it away, you exacerbate the withdrawal cycle that's causing the headaches.  The best thing is to be on estrogen continuously (if you are contracepting either use Seasonique, LoSeasonique or Lybrel.  If not, just continuous estrogen replacement, but it has to be extended release like Enjuvia in a pill or a patch like Vivelle).  

There have been a bunch of studies surrounding patch supplementation for 2 weeks per cycle but they haven't been able to figure out a dose that's optimal.  Some even show strong placebo effect.  I know it worked miracles for me before my hysterectomy.  Mine were bad - saw aura and debilitating - too. 

Worth a talk to your OB/GYN but they need to be pretty "up" on hormones to buy in.

 Thanks so much for all of the information!
I do use a natural progesterone cream and that seems to have helped my PMS symptoms a great deal.   

Wow!  You scored a great treasure indeed.