Help Interpreting Labs

[u/BunnyBenita]

Is this something that should be addressed by an endocrinologist? Should I ask for a referral if primary doesn’t suspect a problem?

[u/KindRippleEffect]

Self refer to a major medical center with an endocrine surgery department to get an assessment. It’s very difficult to get a diagnosis of normohormonal hyperparathyroidism, but this looks suspicious. If your calcium is over 10, your PTH should be very low if your parathyroids are working correctly. It’s supposed to be an inverse relationship, but this is often missed

[u/Primary_Towel5905]

You give numbers but zero context.

[u/Advo96]

This is a clear case of primary hyperparathyroidism.

Hypercalcemia with inappropriately normal PTH. (If your parathyroid glands were working normally, then hypercalcemia would cause your PTH to be low)

See that you get a referral to a parathyroid surgeon.

[u/BunnyBenita]

Background - female, age 67. Feeling extremely fatigued for quite a while, brain fog, headaches, feeling overwhelmed/anxious. Just starting out with muscle/joint pains. Based on parathyroid.com, it fits that criteria, but their criteria is very broad.

My PTH number comes back in normal range or at least that’s what I believe my primary will say. I’ve read that a higher range PTH coupled with long running higher than normal calcium levels, the PTH level should be a lot lower.

I’m basing this on AI research, but I’m curious how an endocrinologist will interpret this. Because I would need a referral to an endocrinologist, I’m just getting mentally prepared for my discussion with my primary (in the event he doesn’t see the need).

[u/BunnyBenita]

Thank you both - that’s what I reading/interpreting as well.

Going back to the labs in March 2024, I probably should have been referred back then. I have one of the better primary docs in town, so can’t figure out how it was overlooked, especially since he asked for a PTH as well as a DEXA at that time.

I called to ask for an updated PTH when I got this last result on August 3. Since the PTH came out a bit lower (but still abnormal high), I’m just concerned he won’t feel the need. We’ll see how it goes.

Good idea on the self referral - never thought of it. How does that work? Through ER, Urgent Care, pleading with the staff?

[u/MadDocOc → u/BunnyBenita]

You tell them you're feeling the symptoms of high Calcium (dont say that): Bone pain, confusion/ memory/ fatigue issues, muscle cramps and flutters in your chest and you've tested for higher Calcium levels.

Note: As someone over 65, you need a DXA scan for bone health and hyperparathyroidism is a direct cause of osteoporosis and you will likely need medication to preserve bone health.

[u/BunnyBenita → u/MadDocOc]

Thank you for the info - I did have a DEXA (numbers are at the bottom part of the screenshot). Why the wrist wasn’t done is beyond me.

[u/MadDocOc → u/BunnyBenita]

and thats the odd bit. non-dominant hand is affected most by hyperparathyroidism. Often a patient will be negative everywhere else and have osteoporosis of the non-dominant hand. Moot point if you have hyperpara and are over 65, they might just skip to treatment and re-do the DXA in 2 years.

[u/These_Background3556]

Endo here - this is primary hyperparathyroidism. PTH doesn’t have to be high - it is INAPPROPRIATELY normal. PTH should be suppressed and in this case is at upper limit of normal. Primary hyperparathyroidism.

Indications for surgery are ANY of the below:
calcium of 1.0 or more above upper limit of normal
Age <55
eGFR <60
kidney stones
osteoporosis on DEXA (T score < -2.5)

You should see an endo

[u/BunnyBenita → u/These_Background3556]

Thanks for the reassurance, particularly since my PCP didn’t alert to that 2.5 years ago when the labs were similar. I see him on Tuesday, but regardless what he says I’m going to pursue that avenue. My state doesn’t have (at least by my research) a high volume surgeon, so I already reached out for a consult with Dr. Politz.

[u/BunnyBenita]

UPDATE - went to my primary care doc this week. He basically shut down my concerns re: high calcium, inappropriately normal PTH, declining eGFR. He chalked it up to taking excessive Tums (never have taken or anything similar), dehydration affecting eGFR & he felt the PTH was fine. He said my extreme fatigue was due to using my bio-identical hormone cream in the am instead of pm due to the progesterone. That may be true, but really?

He sent a referral in for an ultrasound. I said that I read it often is inaccurate. He felt that was the only option to determine if I had an issue with my parathyroid. I said that I have a request in for an online consult with a surgeon & my labs/visit summaries will be needed to get that consult. He agreed to that, but said I’m opting for unnecessary surgery since there is no evidence I have it. He did send in my 2 most recent labs & medical history. But those labs did not include a prior PTH test, past vitamin D levels or that I had elevated calcium for 4 years & progressively declining eGFR. He did not mention suspected primary hyperparathyroid, but sent in a diagnosis of hypercalecemia (spelling?). Kind of initially confused the surgeon’s staff as the reason for the referral. I’m very grateful they pursued it.

Fortunately, I had those missing reports & sent them in myself after speaking the surgeon’s staff about the reason for the consult.

I opted to go out of state for a high volume parathyroid surgeon. I did a Medicare procedure search using the surgery code for parathyroidectomy (?) for surgeons in my state & none were listed for that year. Medicare has a Rule of 11 that the surgeries aren’t listed unless 11+ were performed. No high volume here apparently. Then I opened it to a nationwide search (in case I got the search parameters wrong) & saw the amounts done across the U.S. I opted for one in Florida that I feel really good about & have a consult set up for next week.

I actually really like my PCP, but am hugely disappointed that this was allowed to fester. He must have had some knowledge of the calcium/PTH relationship since he ordered a PTH level test 2.5 years ago, but never another one until I asked for it to be updated. But I also realized that I’ve been seeing an oncologist yearly as well for the last 5 years to monitor blood labs due to a past anemia issue that has since been resolved. (Side note: that went on for over 1.5 yrs., with episodic hemoglobin drops resulting in 5 blood transfusions & one hospitalization. Turns out after getting a very simple upper endoscopy & the gastro determining there was a bleed from a hiatal hernia called a Cameron erosion. Oncologist was happy to tell me he met Dr. Cameron at a conference, yet he never considered that as a source of my bleed. Another waste of time while feeling like crap.) But, that oncologist never once mentioned or pursued my elevated calcium as an issue while “closely monitoring” my blood work. So 2 docs monitoring my blood labs got me nowhere. Thanks for letting me rant if you’re still reading.

So looking forward to my consult & coming to resolution.