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Elevated PTH, normal calcium
I have been struggling with multiple symptoms and problems for almost 2 years. No one can figure out what is going on. "Your tests came back normal" is supposed to be good news, not for me.
A friend of a friend is a PA and not currently working so she suggested that if I would compile all my records, test results, scans, symptom timeline, etc, then she would review and consider "the whole picture" vs specialist tunnel vision. So, in putting all this together, I printed a 10/2022 blood test results. The dr. that ran it didn't have a portal at that time so I'm sure I got a call that said "X and Y are abnormal, but everything else looks good". However, I had an elevated PTH (87 where the high was 65). I had never heard of this test and no one else in 3 years of labs had it ever been done.
My PCP needed to run my normal labs that I have done every 6 months and said she would retest it. It came back at 143.3 (83 was listed as high this time). So she told me to get in with my endocrinologist and bring it up. I did that today. She (endocrinologist) asked about my calcium levels and they are consistently 9.4-9.7. She told me that was normal and she was sure that once my Vitamin D came up a little it would correct. My Vit. D at the test last week (when PTH was 143.3) was 28.3. I already take 3,000 units a day in my multi, so I am adding 2,000 units a day.
But, I feel blown off. I did some more reading and looked back over all my labs that I had built this huge spreadsheet of. My first PTH was 10/3/22. Vitamin D was not run that day. But it was on 12/9/22 and it was 56.8. So I suspect that it is not only high due to my Vitamin D being 28. I have SO MANY symptoms of Hyperparathyroidism-confusion, brain fog, headaches, severe fatigue, nausea at times, weight gain (I know not typical), I cracked 3 ribs coughing so I suspect bone issues, constant aches and pains, HORRIBLE increased thirst and urination, increasing depression (but depression for me is not new).
Thankfully, my PCP and GYN wanted to order a bone density scan for me this year when I have my mammo due to my mom having osteoporosis. My endocrinologist did say she treats primary hyperthyroidism and this didn't fit that guide since my calcium was normal. However, my friend that was the PA that I mentioned above said that the calcium run in a Metabolic Panel wasn't the "right calcium" to track.
Do any of you with experience have any suggestions? Should I try to get a second opinion? Should I just wait to retest my Vit. D in a month or two and see if the PTH is still elevated if and when the Vit. D is back to normal?
I did request a visit to Mayo general Internal med. back in June and was denied a visit. I considered reapplying to endocrinology, but didn't know if that was even possible after being denied to another division. I also had a mildly elevated cortisol in a Dex. suppression test, but normal 24-hour urine.
Thanks!
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I’m sorry that you have been struggling with multiple symptoms and problems for a couple of years.
The PA that offered to review your records in search of the “whole picture” was kind to do so. But the ones you mentioned were from 2022. That is going on 3 years ago. Do you have anything more recent?
The main title of this discussion is “Elevated PTH, normal calcium”. By PTH do you mean parathyroid? It is surprising how many people confuse this with thyroid much less understanding conditions associated with parathyroid troubles! The similar names don’t help the situation. Even your endocrinologist deals mainly with thyroid problems.
That reminds me; you mentioned increased thirst and urination. Have you mentioned that to your endocrinologist? Not to alarm you more than you already are but those are hallmarks of diabetes.
A good endocrinologist is worth their weight in gold. Mine monitors labs (including calcium and vitamin D, thyroid and parathyroid function labs), everything related to my diabetes, my history of hyperthyroidism, my osteoporosis…..and consults with my nephrologist too. I have chronic kidney disease (CKD stage 4). Perhaps a second opinion from another provider wouldn’t hurt. Why did you self refer to Mayo Internal Medicine (if you don’t mind me asking?) You have a lot going on. Is there more?
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1 ReactionThanks for your reply!! To answer your questions (I hope I catch them all):
--My original high PTH that I just discovered was in 2022, but the one my PCP ran (that came back at 143.3) was just last week.
--I misspoke. My endocrinologist treats primary hyperparathyroidism (I left out the para) in my original post. I am going to see if I can edit. However, she treats thyroid issues, diabetes, insulin resistance, PCOS, etc.
--Yes, I am looking into Parathyroid now. I have had multiple full work-ups for thyroid over multiple years. I do have multiple thyroid nodules, but they are just being monitored every 6-12 months.
--My A1c is 6.0. It had been around 5.6 for almost a year. It was up to 6.4 in May 2022 when I had gastric bypass surgery. I got it down to 5.2 and had lost 90 lbs. Both started creeping back up a few months after my symptoms started and I am back up 55 lbs and my A1c is now back to 6.0. But the thirst and urination didn't get better despite if A1c was high or low. I was tested for Sjogrens, but despite my ANA being over 5,000, my specific titers for everything are always negative (tested twice).
I self-referred to Internal because at the time (and really still), we didn't know what is going on with me. I am currently under the care of cardiology (high bp and tachycardia), Rheumatology (positive ANA evaluation), endocrinology, psychiatry, neurology, and gynecology (being tested for hormone levels despite having had a hysterectomy with ovary removal 15 years ago).
My psychiatrist is the first one that kept saying it was something systemic and no one was considering everything. I mentioned to him today about the elevated PTH and he lit up. Said that fit almost all the boxes. He also said my friend is correct that if they aren't measuring ionic calcium then it might be missed that my calcium was high. So I will almost definitely be looking into a second opinion. Just not sure where.
My current symptoms/issues are:
--confusion
--brain fog
--headaches
--severe fatigue
--nausea at times
--sudden, unexplained weight gain
--I cracked 3 ribs coughing so I suspect bone issues
--constant aches and pains
--excessive thirst and urination
--increasing depression (but depression for me is not new)
--stable/medicated high bp and tachycardia
--dry, brittle skin
--slow healing
Hi @say7418 - nice to meet you and hear your story. I found your note quite interesting as I have suffered with hyperparathyoidism off and on for over 30 years now. I have it as a result of MEN1 and have had all but 1/2 of one parathyroid removed over three different surgeries. I found this site to be very helpful in understanding the condition and symptoms. (https://www.parathyroid.com/) - thought I am not endorsing any given institution - just found it very helpful when I first was diagnosed. Take care - Matt
Say7418, For what its worth, I have elevated PTH and normal calcium and have no symptoms. Endocrine doc has checked bone density, urine and blood. For me all good, but Parathyroid hormone is elevated.
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1 ReactionThank you! I have done a lot of reading in the last week from that site. It is very helpful. I still have more to cover.
My current endocrinologist is saying that my PTH is likely high due to low Vit D. But my Vit D was 28 so just barely low and my PTH was really high. Additionally, my first elevated PTH, I had a Vit D of over 50.
I have also had gastric bypass surgery so I wonder if that changes what my “normal” calcium should be.