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My parathyroid and phosphorus levels are elevated and calcium low. MY doctor is working with me to get the levels back to the normal range. I didn’t realize there were things I could do to ease the unpleasant symptoms and am glad you have this website with all the info. Do you know of any support groups with others with PHP? Have others tried eating low carb high protein diets to help reduce symptoms? It would be nice to be in contact with others to see what has worked for them. Thanks, Debbie
Debbie: Elevated PTH and phosphorus plus low calcium and vitamin D levels are to be expected. There is a group on Facebook, just type in Pseudohypoparathyroidism in Facebook’s search box. High protein diets are shown not to be recommended for PHP patients, because it can cause a patient to excrete more calcium than normal through the urine. Of course, I am by no means a doctor so please talk over the particulars with your physician. I hope the information in this site will be helpful to you. Thanks for commenting.
My daughter was just diagnosed with Pseudohypoparathyroidism. She is 12 yr old. I was just wondering what type of problems does she face in the future? Does it ever go away or correct itself. Will she be able to have children in the future? Just trying to understand it more and what to expect.
Although there are symptoms shared by all PHP patients, not everyone has them to the same degree. Some patients have more developmental delays than others. Some patients have seizures, others do not. Some patients develop other hormone problems, while others don’t. Is she on growth hormones? Does she see an Endocrinologist? If yes, you may want to ask her Endocrinologist if her bones have closed yet (meaning is there still room for growth?) and if she would be a good candidate for growth hormones. This is the only Endocrine disorder that will cause short stature. I stopped growing when I was 13, but my bone age was that of a 15 year old so it was too late for me to take growth hormones. This is a lifelong condition, there is no cure, there are only management tools. Again, you will have to ask her doctors about if she can have children, though many PHP patients I have talked to do have children. However, this is a genetic condition which will most likely be passed on. Be aware that this disorder causes bone and joint problems, as well as Calcium & Vitamin D deficiencies which in turn causes numerous muscle problems (spasms, tenderness and pain in the muscle groups). You may want to have your daughter screened for Scoliosis as well. I hope this has answered some of your questions.
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I created this site to share my experience with Pseudohypoparathyroidism.
Most of the websites I've found on the topic say the same thing without any real insight into the complexities of dealing with this condition.
After being in contact with a few others who have or have family members with Pseudohypoparathyroidism, I realized that there are a number of details that patients may not be aware of.
I hope this site will help fill some of those information gaps.
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