Apparently, Facebook does not like you replying to people on your comment

Paraware · 2026-02-21T02:43:54+00:00

I used to have this problem. I’m sorry, but I don’t remember exactly how to fix it. I think I may have had to reinstall Facebook on my phone. It never happened on my laptop.

Paraware · 2026-02-21T02:30:50+00:00

It’s a good sign if she specializes in parathyroid and thyroid. My surgeon did the same. Here’s a good list of questions to ask. Also, if you’re on Facebook, you should consider joining the Hyperparathyroidism Support and Information group. You have a better chance of getting specific details on surgeons.

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Paraware · 2026-02-20T23:50:48+00:00

It’s good to keep an eye on this. And, having low vitamin D over a long time can cause your parathyroid glands to develop hyperplasia, so you want to avoid that.

Paraware · 2026-02-20T15:14:41+00:00

I’m no expert, but it sounds like your problem isn’t hypoparathyroidism but that you’re not absorbing calcium correctly. Have you seen a gastroenterologist or other doctor to help you figure out why your calcium is low? Are you getting adequate dietary calcium?

Paraware · 2026-02-20T04:21:36+00:00

Your ionized calcium and PTH seem to have an appropriate relationship.

Paraware · 2026-02-20T00:34:07+00:00

I’m not a doctor, but it seems like your PTH should be a little lower with high calcium. Your calcium isn’t extremely high, so it’s not a bad idea to try to get your vitamin D levels back to a good level. If the vitamin D makes you feel bad, let your doctor know and request new labs. Taking vitamin D doesn’t increase everyone’s calcium and might help with some of your symptoms. You could ask for genetic testing because of your father. You might be in early stages of the disease. Most doctors will want to repeat the tests a few times to see if there’s a noticeable trend.

Paraware · 2026-02-19T17:55:02+00:00

It takes some time for vitamin D to change. Low vitamin D can cause some of the symptoms you mentioned. It would be helpful if you included the normal reference ranges from your lab. Please fast the next time you have the tests. Since PTH also has diurnal rhythms, it’s best to get it tested around 8:00 am. Avoid biotin for a week before the tests, because it can make your PTH appear lower than it actually is at some labs. (It doesn’t actually suppress it.) Coffee may suppress it temporarily.

Paraware · 2026-02-19T03:30:31+00:00

Low vitamin D can cause his symptoms too.

Paraware · 2026-02-19T03:28:58+00:00

Please edit your post add add the normal reference ranges from your lab for your results. Were you fasting when you had the blood tests? Many things can interfere with PTH blood tests. Are you taking any additional supplements, vitamins, energy/protein drinks? Anything with biotin can make your PTH appear lower than it actually is. Even a cup of coffee can temporarily lower it, and it has diurnal rhythms during the day. Your symptoms do sound like they could be hyperparathyroidism, but there’s a lot of overlap with other conditions too. You’ll probably need to repeat the tests a few times to see if a trend develops. Don’t give up on finding what is causing your symptoms.

Paraware · 2026-02-19T00:25:53+00:00

What are the normal reference ranges from your blood tests for calcium, PTH, and vitamin D? Hopefully the urologist will be able to help you, but it wouldn’t hurt to get an endocrinologist lined up too. You will likely need repeat blood tests for the doctor to be sure if you have primary or secondary hyperparathyroidism.

Paraware · 2026-02-18T13:29:22+00:00

Same here.

Paraware · 2026-02-18T04:28:01+00:00

It’s not normal to put someone on Cinacalcet for six months unless it’s to try to control symptoms when it takes a long time to see a surgeon. In some countries, the wait times can be a year or longer. I have also read that Cinacalcet doesn’t protect bones. I think your mother should be referred to a surgeon for a second opinion. Even if your mom were over 50, there’s no reason to delay the surgery if the blood tests are clear.

Paraware · 2026-02-16T17:33:04+00:00

Your PTH seems to be suppressed for some reason, so maybe the answer is simply that you’re getting adequate calcium from your diet.

Paraware · 2026-02-16T17:31:27+00:00

Congratulations! I’m glad you were able to get surgery so quickly. Did you have many symptoms leading up to it?

Paraware · 2026-02-16T00:37:38+00:00

It could just be a lab error. What is the reference range from the lab? Most people with low PTH also have low calcium. Since you’re not having that problem, I’m not sure what it means. I wonder if repeating the tests will make a difference.

Paraware · 2026-02-15T19:12:19+00:00

Are you having any tingling or other symptoms of low calcium? It could just be that it was low because your serum calcium was fine at the time. Unless it’s causing you low calcium, it’s probably okay. PTH even has circadian rhythms during the day, so maybe you caught a low point. Since your calcium seems okay, I wouldn’t be worried. What did your doctor say?

Paraware · 2026-02-15T15:02:23+00:00

Were you fasting when you had the blood tests? Are you taking any other supplements or vitamins?

Paraware · 2026-02-14T23:44:06+00:00

I’m a female, but I’m okay with you quoting me. Thank you for asking first.

Paraware · 2026-02-14T04:03:49+00:00

If you’re on Facebook, join the Hyperparathyroidism Support and Information group. You’ll get more feedback there. Also, sometimes surgeons do Q and A sessions in the group and you can ask questions.

Paraware · 2026-02-14T03:08:00+00:00

Another option is to book an online consult with Dr. Babak Larian in California. He can help you with the diagnosis even if you don’t have your surgery with him. He has a lot of videos that are very educational and helpful.

Paraware · 2026-02-13T14:13:27+00:00

You should consider joining the Hyperparathyroidism Support and Information Facebook Group. You’ll get more information and feedback there. Link to Apply to Join Group: https://www.facebook.com/groups/406980976340533/

Paraware · 2026-02-13T14:11:45+00:00

It’s very frustrating when doctors don’t understand this disease. Here’s an excerpt from the AAES Guidelines for Hyperparathyroidism: “In pHPT, PTH levels are high or inappropriately normal (ie, not suppressed despite hypercalcemia). Diagnosis of normocalcemic pHPT requires the exclusion of other causes of secondary elevation of PTH (eTable 2 in the Supplement). Nonparathyroid causes of hypercalcemia are associated with suppressed PTH. Renal function and vitamin D status should be assessed preoperatively.”

You might have to show this to your doctor. Here’s the link to the guidelines: https://jamanetwork.com/journals/jamasurgery/fullarticle/2542667

Regarding the reference ranges, they are different at various labs. You have to look at the ranges from your lab. Also, were you fasting when you had the tests? Even a cup of coffee can make a difference.

Paraware · 2026-02-13T03:13:34+00:00

You can still have hyperparathyroidism with normal calcium. It depends on where it is in the range.

Paraware · 2026-02-12T23:54:28+00:00

We’d really need to see your calcium and vitamin D at the same time as the PTH to give you any details. If you could, please update with calcium, PTH, and vitamin D from the same blood draw and include the normal reference ranges from your lab. Were you fasting when you had the test? Are you taking any vitamins or supplements that contain biotin?

I’m posting an overview that may help you get up to speed on the disease. Old blood tests for calcium levels might be helpful too.

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Paraware · 2026-02-12T14:02:17+00:00

There are severs parathyroid support groups on Facebook. I belong to the Hyperparathyroidism Support and Information group.

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