Calcification issues....I'm very worried

[buffalobillsfan]

Surgery date was 10/2009. In the middle of last year I had what felt like 2 UTI's. My doctor sent me for an ultrasound where we found out I had a large calcium oxalate kidney stone. Rather than wait for it to cause issues I opted to have it removed in March of this year. I ended having a stent put in for 3 weeks and a 2nd surgery to remove it. It sucked.

I know that I have always had a hard time getting enough liquids in because I never feel thirsty. Before surgery I couldn't take my vitamins and it ended up becoming a habit. I have reasons for not taking great care of myself (work/family stress, pet deaths, surgery) but I know that this is NOT AN EXCUSE. I had to go for a 3 month follow up after my surgery to see if there was any kidney damage from the surgery. I was so upset to find out I already had another large stone in the other kidney that wasn't there 4 months prior. This just sent me into a tail spin. Instead of taking better care of myself, I went the other way. I was supposed to follow a kidney stone diet which is DS friendly but also limits many foods I love. It also clashes with DS guidelines on limiting protein and vitamin D. It's a challenge to balance multiple health issues and the DS because no one really understands the total picture. I WAS NOT following the protocol I was supposed to like eating cheese/milk with higher oxalate foods, drinking tons of water, taking potassium citrate. Again, I take full responsibility for my actions. It's unacceptable and I deeply regret it. Overall I have been off-track for about 9 months.

Recently I woke up with extreme pain in my right rotator cuff. An x-ray revealed calcific tendonitis. It's better now but there is that word again calcific! Then my doctor also sent me for a calcium heart score and the results are scaring the &%$# out of me. Basically, only 3% of people in my category, (49 year old, white, female) scored worse than me. I have an appointment to discuss the results with my doctor next Monday but today I woke up in a panic attack. I will paste below. I went "home" last week to face some of the issues that have been weighing on me so I could get some healing around them. I planned on doing a major life overhaul when I returned. I started taking all of my meds and vitamins yesterday and drinking lots of liquids. I made the appointment with my PCP and scheduled to get my full DS labs next Monday. I haven't had them done in about 14 months so I will be very curious (and scared) to see the results and what I need to tweak.

My cholesterol has always been low (after DS I had too low and was told to eat more animal fat). My blood pressure is normal. I did smoke for 30 years but quit 9 years ago. When I read about atherosclerosis which I think the results are showing, I am overwhelmingly worried. Why do I suddenly have all of these calcium related issues???? I have no idea if Dr Rabkin would understand the whole heart/DS/kidney stone issues or who I should see. Part of my life overhaul was to leave my extremely depressing animal shelter job and now I feel like I can't because I don't know where my health issues will lead me. I've had hernia surgery, emergency bowel obstruction surgery, kidney stone surgeries and now this. I know that I would not be alive today if it wasn't for my DS (I'm 5'2" and weighed 294lbs and was still growing and now I'm 142lbs) but I have moments where I hate it now as I feel my body is turning on me as much as I turned on my body. Sorry this is so long. There isn't anyone who really understands what I'm dealing with right now. Thanks for reading and hopefully not judging!
Cathy
Impression
IMPRESSION:

1. Calcium score is 60.1, which places the patient in the 97th percentile for age and gender.

2. Scattered subcentimeter pulmonary nodules. The largest is triangular in shape and measures up to 6 mm along the right minor fissure, new from previous and nonspecific. It may represent an intraparenchymal lymph node or focal atelectasis. Per Fleischner Society guidelines for incidentally found soft tissue nodules measuring less than 6mm, no follow-up is necessary if patient is considered at low risk for lung cancer. If patient is considered to be at elevated risk for lung cancer, such as history of smoking, then low-dose CT follow-up in 12 months can be considered.

CORONARY CALCIFICATIONS:

Visual assessment of the coronary arteries shows multifocal calcification within the right coronary artery, and minimal calcification within the left circumflex. Quantitative calcium score provided by the 3D Lab is 60.1.

CARDIOVASCULAR:

Heart: Normal in size. Minimal aortic valvular calcification.

Pericardium: No pericardial effusion.

Pulmonary arteries: Not enlarged.

Thoracic aorta: No significant abnormality.

OTHER

Medical devices: None.

Lung parenchyma: 6 mm triangular-shaped density along the right minor fissure (303/31), new from 2/27/2017, nonspecific. It may represent a lymph node versus focal atelectasis. 2 mm nodule superior segment right lower lobe (303/7). 3 mm nodule left upper lobe (303/23). Focal bullous change within the left upper lobe.

Airways: No significant abnormality.

Pleura: No significant abnormality.

Chest wall: No significant abnormality.

Upper abdomen: Surgical ligature noted along the gastroesophageal junction, partially imaged.

 

[southernlady]

@buffalobillsfan there are many threads around here talking about kidney stones and one is even on the risk panel, I think @Marquis Mark posted it.

Those dealing with this may have more input. I'm sending hugs.

 

[Clematis]

I am a "stoner". I had a couple of stones in the 1970s, then none for nearly 40 years, then one in 2014, DS in 2015, and stone after stone after stone starting 7 months later in 2016. I have thoroughly, maniacally researched and tested all possible causes. I have contacted Frederick Coe, MD out of the U of Chicago, the leading expert on stones, and the inventor of the Litholink urine assessment test. https://kidneystones.uchicago.edu/kidney-stone-book/ I have exhausted the resources of the Cleveland Clinic.

Here is what I did:

1. One should produce about 88 ounces of urine in a day to help avoid stones. For me this meant drinking 105 ounces a day, about 12 oz right before bed so I am compelled to get up in the middle of the night to pee. (The key is to keep the particulates in urine "moving" and not allow them to settle out in the kidney to form a stone.) I do that.

2. I virtually eliminated oxalates from my diet, even though my 24 urine didn't show that to be much of a problem.

3. I take prescription strength potassium citrate. Again, my 24 hr urine didn't show that to be much of an issue.

4. I reduced sodium intake to <1500mg.

5. I drastically reduced sugar consumption.

6. I did not adhere to the 1gr of protein max per 1 kilo of body weight because my protein levels are sub normal as it is.

I was a poster child for obedient stone avoidance... and I STILL rapidly produced stone after stone after stone. Two (so far) required anesthesia, lithotripsy and stents. I've lost count but I think there have been 10-12 in a year.

The nephrologist, urologist and even Dr. Coe said they didn't know what else to tell me as I was doing everything "right".

I can't change the calcium malabsorption of the DS which can make those genetically predisposed to stones to form them, but I have tried to get off PPIs (or H2s) as they have a 12-13% increase in stone formation. In that process during the months of May and June (the rebound heartburn is MURDER) I was eating fistfuls of Tums (calcium carbonate). And I developed the largest stone ever, double the size of any other, in only 6 weeks, that blocked my ureter and was causing kidney damage.

EUREKA!

Here is what I believe:

Calcium supplements are causing my kidney stones. (Well, together with a genetic predisposition.)

I have been taking them religiously post DS, but I was also taking them back in the 70s when I first got stones after my grandmother was DXed with osteoporosis, and then again in 2014. During that 40 year stone "hiatus" I had episodes of "pseudo gout" (not DXed but I am confident that's what it was) that is caused by calcium crystals in the joints... and I am pretty sure would correspond to calcium supplementation. I truly believe I have a CALCIUM problem, not a stone problem.

Since July 1, I eat enough cheese and yogurt to get my needed calcium and take no calcium supplement other than what is in my two Centrum. I go in for a KUB X-ray in two weeks and I am very hopeful that I will be given a clean slate.

My story may have no relation to yours, Cathy, since I have no cardiac issues (but by god I'm gonna have PCP check that NOW!!). I hope you get your issues squared away. Stones suck. Heart issues suck worse.

 

[buffalobillsfan]

I am a "stoner". I had a couple of stones in the 1970s, then none for nearly 40 years, then one in 2014, DS in 2015, and stone after stone after stone starting 7 months later in 2016. I have thoroughly, maniacally researched and tested all possible causes. I have contacted Frederick Coe, MD out of the U of Chicago, the leading expert on stones, and the inventor of the Litholink urine assessment test. https://kidneystones.uchicago.edu/kidney-stone-book/ I have exhausted the resources of the Cleveland Clinic.

Here is what I did:

1. One should produce about 88 ounces of urine in a day to help avoid stones. For me this meant drinking 105 ounces a day, about 12 oz right before bed so I am compelled to get up in the middle of the night to pee. (The key is to keep the particulates in urine "moving" and not allow them to settle out in the kidney to form a stone.) I do that.

2. I virtually eliminated oxalates from my diet, even though my 24 urine didn't show that to be much of a problem.

3. I take prescription strength potassium citrate. Again, my 24 hr urine didn't show that to be much of an issue.

4. I reduced sodium intake to <1500mg.

5. I drastically reduced sugar consumption.

6. I did not adhere to the 1gr of protein max per 1 kilo of body weight because my protein levels are sub normal as it is.

I was a poster child for obedient stone avoidance... and I STILL rapidly produced stone after stone after stone. Two (so far) required anesthesia, lithotripsy and stents. I've lost count but I think there have been 10-12 in a year.

The nephrologist, urologist and even Dr. Coe said they didn't know what else to tell me as I was doing everything "right".

I can't change the calcium malabsorption of the DS which can make those genetically predisposed to stones to form them, but I have tried to get off PPIs (or H2s) as they have a 12-13% increase in stone formation. In that process during the months of May and June (the rebound heartburn is MURDER) I was eating fistfuls of Tums (calcium carbonate). And I developed the largest stone ever, double the size of any other, in only 6 weeks, that blocked my ureter and was causing kidney damage.

EUREKA!

Here is what I believe:

Calcium supplements are causing my kidney stones. (Well, together with a genetic predisposition.)

I have been taking them religiously post DS, but I was also taking them back in the 70s when I first got stones after my grandmother was DXed with osteoporosis, and then again in 2014. During that 40 year stone "hiatus" I had episodes of "pseudo gout" (not DXed but I am confident that's what it was) that is caused by calcium crystals in the joints... and I am pretty sure would correspond to calcium supplementation. I truly believe I have a CALCIUM problem, not a stone problem.

Since July 1, I eat enough cheese and yogurt to get my needed calcium and take no calcium supplement other than what is in my two Centrum. I go in for a KUB X-ray in two weeks and I am very hopeful that I will be given a clean slate.

My story may have no relation to yours, Cathy, since I have no cardiac issues (but by god I'm gonna have PCP check that NOW!!). I hope you get your issues squared away. Stones suck. Heart issues suck worse.

Thank you so much for your reply! I will be eagerly awaiting your results to hear if it worked. Crossing fingers.
I feel like there is some piece of the puzzle that is missing for me. I know there is a correlation somehow. I had the same routine for years so I'm not sure why suddenly all these issues. I've never done well on water intake. When they discovered my second stone I realized that I was quickly forming it and this wasn't an accumulation over a long time. I was eating a boatload of high oxalate foods before my first stone but I always have. The only thing that changed is I went from vitalady calcium citrate to pure encapsulation calcium citrate during that time. I hope I can find some health professional that will help me find answers.
Let me know about your test results. I'll post my blood test results past and present too.

 

[southernlady]

In the meantime, @buffalobillsfan, drink far more. Lots more.

 

[Marquis Mark]

Can't add much more than Clematis did. I had a horrible stone risk panel but, so far (knock on wood), have not developed stones. Weird. Good weird.

After seeing the risk panel, my bariatric endocrinologist told me to cut back drastically on calcium supplements. When I did my oxalates dropped quite a bit (though not as much as I had hoped) BUT my calcium/PTH levels stayed the same (even after dropping my dose from 3,000 to 1,000 day) so I concur that the problem may lie in excess calcium consumption. Not to mention it causes horrible constipation.

Best wishes....

 

[Clematis]

The only thing that changed is I went from vitalady calcium citrate to pure encapsulation calcium citrate during that time

Hmm if it were me, I'd go back to Vitalady calcium! Something in that pure encapsulation formula just may not work for you.

 

[southernlady]

Hmm if it were me, I'd go back to Vitalady calcium! Something in that pure encapsulation formula just may not work for you.

Unfortunately getting hold of the Vitalady calcium is problematic these days.

 

[Clematis]

Also you may want to ask for a Litholink 24 hr urine test for kidney stones. It's the same 24 urine collection as usual 24 hr urine tests but has far more comprehensive analysis. The report gives specific actions to take so ask to see it. Your physician has to order the test and you have to call Litholink and they send you the kit. (You only send back a small vial.) FYI: some insurance doesn't cover the entire cost. I had to pay $100.

 

[BigGeekGirl]

Wow. I too wonder if we take too much calcium. At one point I know I was toxic with it (muscle twitches, arm jerking). I had to cut back.

It's so hard to balance because each of us has different genes, different lengths of our intestines and have adapted to it differently.

I am concerned about my heart health as well.

Do you mind me asking how much calcium you were taking daily?

And what was the name of the test they gave you to look at calcium in your heart?

I know this past year I've gone down to supplementing about 1200 mg a day vs. 2400 (I was above 3000 when I had the toxic symptoms).

I'll be interested if my labs still show ok on this lower dose.

Keep us updated on your struggle.

 

[Clematis]

FYI: After three months without calcium supplements, I'm thrilled to report that an X-ray shows I have ZERO kidney stones when every one of the many X-ray/MRI/ultrasound I have had since about 6 mos post op have shown kidneys full of them. And so I am absolutely convinced calcium supplements were causing my calcium oxalate kidney stones. (Why didn't all these urologists and nephrologists figure this out???) Now I only get calcium in the 2 premier protein shakes, a small bit of calcium in 2 Centrum and then only calcium in food like yogurt and cheese. I'll be interested to see my PTH results on my 2 year labs next month.