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High vitamin D post parathyroidectomey

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Female 44 Med history: Kidney stones - chronic Renal Cell Carcinoma s/p total left nephrectomy 2017 Parathyroidectomy 2.5 glands removed 2108 BRCA2 mutation T2D well controlled A1C 5.5 1000 mg Metformin, 7.5 monjuaro Rheumatoid Arthritis Imuran 150 mg MCAS Allegra, Pepcid, Xolair 300 mg I was diagnosed with parathyroid hyperplasia and had surgery in 2018. Understand that my numbers were never incredibly high. I would have a calcium of 10.2 and an inappropriately high PTH of 90. Unfortunately, the surgeon was only able to identify 3 glands. The 4th was MIA. So surgery removed 2.5 glands. He left half of the 3rd in case I only had 3. I’ve had imaging done that does not identify #4. My calcium and PTH has always been borderline abnormal. I’ve been monitoring bloodwork and this time, my Ca was 10.3 and my Vitamin D was very HIGH at 154. My pcp did not want to order a blood test for PTH because it had been normal the time before. I am alarmed at the high vitamin D level. I have been on 5,000 iUs of vitamin D daily for years. Because at one point my vitamin D was very low. Because of my health issues, I am getting bloodwork done twice a year. It’s never been above 40. Even with years of supplementation. My pcp feels that my body is just absorbing the vitamin D supplementation effectively now, and to stop the supplement. I am concerned. The amount/brand/time of day I take the vitamin D has not changed in literally 3 years. But the blood level rose 3 times in 6 months? PCP refuses to do a repeat Ca/PTH/vitD until I’ve been off of the supplement for a month. I have a great relationship with my pcp. But I feel like he has never understood my parathyroid issues as my ca was never like 11. Appreciate any thoughts. Just trying to protect my lone kidney.

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Subreddit
r/AskDocs
Author
u/amhCMH
Posted
Feb 12, 2026 at 2:51 PM UTC
LeadScore: 5

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Condition
kidney stones, renal cell carcinoma (post left nephrectomy), parathyroid hyperplasia / post-parathyroidectomy, BRCA2 mutation, type 2 diabetes, rheumatoid arthritis, mast cell activation syndrome (MCAS), solitary kidney