Living With Primary Hyperoxaluria Type 1

The most important thing you can do when you have primary hyperoxaluria type 1 (PH1) is to get a diagnosis and treatment early on. Your doctor will probably prescribe medicines to reduce the oxalates in your body. They also may recommend some lifestyle changes, like staying well-hydrated and avoiding certain nutrients.

Stay Hydrated

Good hydration is important for everyone. But it's crucial for people with PH1. Drinking lots of fluids helps flush out your kidneys so oxalates don't build up and turn into stones. Aim to drink at least 2-3 liters (8 1/2 to 13 cups) each day.

If you have a hard time drinking enough, carry an insulated water bottle with you throughout the day as a reminder. Mixing up your liquids may also help. You might alternate, for example, between:

  • Plain water
  • Water flavored with cucumber
  • Decaffeinated herbal tea
  • Low-sugar (or sugar-free) lemonade

It can be hard to drink enough liquids for some people, especially children with PH1. Some children might need to have a feeding tube inserted to make sure they get enough fluids.

Limit High-Oxalate Foods

You don't need to totally avoid foods that contain oxalates. That's because people with PH1 have high oxalate levels because of a genetic defect rather than diet.

That said, you could avoid even higher levels if you limit oxalate-rich foods. Foods high in oxalates include:

  • Chocolate
  • Cocoa
  • Rhubarb
  • Leafy greens like spinach
  • Black tea
  • Nuts
  • Peanut butter
  • Star fruit

Don't Overdo Vitamin C

Most vitamin C-rich fruits and vegetables are OK to eat. But avoid vitamin C supplements. That includes immune-boosting ones that contain high doses of the vitamin.

Vitamin C gets turned into oxalate in your body. A few doctors have reported cases in which people who took very high amounts ended up with kidney damage.

Get More Calcium

People with hyperoxaluria may end up with more bone fractures. That's because oxalate attaches to calcium in bones, which can damage them.

But eating more calcium-rich foods may lower oxalate levels in your body. The calcium you eat bonds to the oxalate, and it then leaves your body in your poop. You might also take calcium supplements, if your doctor advises.

This probably won't help a lot, since PH1 is due to an inherited defect. But it may be a worthy addition to your other efforts.

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Scale Back on Sodium

A low-salt diet may help because sodium raises the level of calcium in your urine. When oxalate attaches to calcium in your urine, it leads to stones. Limiting sodium -- ideally, to no more than 1,500 milligrams a day -- also has heart-health benefits.

Consider Probiotics

There isn't much scientific evidence right now, but probiotics ("good" bacteria) may help your body get rid of excess oxalate. A probiotic supplement with a bacteria called Oxalobacter formigenes might be worth a try.

WebMD Medical Reference Reviewed by Minesh Khatri, MD on May 06, 2020

Sources

SOURCES:

Cleveland Clinic: "Hyperoxaluria."

Gene Reviews: "Primary Hyperoxaluria Type 1."

International Journal of Nephrology: "Vitamin C-Induced Oxalate Nephropathy."

Mayo Clinic Health System: "Tips for Drinking More Water."

National Organization for Rare Diseases: “Primary Hyperoxaluria.”

Rare Diseases Network: "Rare Kidney Stone Diseases in Depth."

University of Chicago: "How to Eat a Low Sodium Diet."

UpToDate: “Primary Hyperoxaluria.”

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