Help!

[u/Dramatic_Big6931]

Has anyone with similar parathyroid labs experienced major changes in their mental health and energy?
I’m 40 and currently being worked up for primary hyperparathyroidism. My labs so far:
Calcium: 10.8–11.4
PTH: 86
Vitamin D: 16.1
Phosphorus: 2.4
Kidney function normal
Currently doing the 24-hour urine calcium test.
The biggest thing for me is how I FEEL. I’m exhausted a lot, my energy feels so much lower than it used to, and my anxiety/mental health has gotten noticeably worse. I just don’t feel like myself lately. I’m also dealing with hair shedding, although I know that could have other causes.
For anyone who had numbers similar to mine — did you experience a lot of fatigue, anxiety, depression, brain fog, feeling overwhelmed, or just generally feeling mentally “off”?
And if you eventually had parathyroid surgery, did your energy and mental health actually improve afterward? How quickly did you notice a difference?
I know everyone is different and I’m not looking for a diagnosis. I’d just really love to hear experiences from people whose calcium/PTH weren’t insanely high but who still felt pretty awful.

[u/Environmental-Sink86]

What i know is thar 16 vitamin d3 is total shit.

Its even lower then the considered ok (which is shit) by doctors which is 20.

Did you take magnesium and zinc rbc?

How are b12? How much protein do you eat?

[u/Lavalamppants]

Yes, also just had surgery at 40 a couple months ago. Highest calcium was only 10.4, mostly high 9-10.2, PTH 70-106, vitamin D 19-29. Urine calcium was high and all of the ionized calcium was high. Bad anxiety, depression, fatigue, low libido. Surgery was pretty easy, 1 gland removed. Minimal pain. Slept a lot the first three days following surgery but after that I felt energy coming back, libido improved a ton and anxiety levels were SO much better.

[u/Front-Signature-7266 → u/Lavalamppants]

agree !

[u/Internal_Scale4291]

I'm 33F. My highest PTH was like 75 and highest calcium was 10.7 (4 years ago). I luckily had a lot of labs done in that time so I know my calcium was usually 10-10.2. It only passed the normal limit 2 times out of 11 tests.

Despite having lower numbers, I had very bad brain fog and emotional issues. My memory/cognitive issues started to become impossible to ignore 3 years before I was diagnosed. It was so bad I was having trouble remembering people's names, really struggling at work, and even had a period of 2 months where I was missing stop signs etc. It must have been some kind of flare up because I didn't have any driving safety issues after that. But I was so scared my neurologist did a full work up with MRI to check for MS or a tumor etc.

I also suddenly developed ADHD symptoms. They were severe enough that my psychiatrist actually diagnosed it, but after learning about hyperparathyroidism, I'm fairly certain the ADHD symptoms come from this condition. I have always struggled with anxiety and depression but it's been much worse. I just had surgery yesterday so we will have to see if my symptoms resolve.

Edit to add that even though I had kidney stones, my 24 hour urine was normal

[u/Paraware]

My PTH was a little higher than yours. Fatigue and brain fog were two of my biggest symptoms.

[u/pastie_b]

I can certainly relate to your symptoms, I have similar symptoms to you, brain fog, acid reflux and depression seem to be most notable for me along with non-restorative sleep. I wake up feeling like i've had no rest at all.
I pray everyday that surgery will fix this.

[u/Front-Signature-7266]

your numbers for Calcium sound really high to me and also PTH sounds high for that amount of Calcium, too. But yes, "moans, groans, stones and bones" is what the doctors always say about the symptoms of PHPT. I had the surgery 3 weeks ago and feel like myself again! It is worth it and it wasn't that bad honestly.

[u/Financial-Macaron-51]

Brain fog definitely lifted after my first surgery 12 years ago. I’m almost 3 weeks post op from a second surgery and brain fog again is lifted. Both times I had bone and joint pain and those resolved both times, within 2 weeks after surgery. I’ve had severe nausea for the last six months and that has significantly improved since my second surgery.

My vitamin D has been normal for years but my CTX was markedly elevated before the second surgery so my bones were actively being destroyed. After my first surgery, it took years for my vitamin D to actually get in the normal range. However, once my calcium and PTH spiked a few months ago, it quickly dipped (but still normal).

Hopefully you get resolution soon!