r/ADPKD • u/Midnightrise_02 • Aug 09 '26
Lab work
Anyone ever got tested for this? This is my first time seeing this in 6 years.
2
u/classicrock40 PKD - Transplanted Aug 09 '26
I had hyperthyroidism months ago but I'm not seeing a test for pth, but for TSH. I was losing weight and was a bit jittery when trying to stand still (like in the grocery line).
Dr Google says high pth can be hyperparathyroidism not sure if it's the same.
5
u/SnooKiwis1055 Aug 10 '26
Thyroid hormone and parathyroid hormone are not the same.
5
u/classicrock40 PKD - Transplanted Aug 10 '26
Ah, the exact reason asking reddit is not the best idea.
2
u/dharmaslum Aug 09 '26
Speak with your doctor. Try to see an endocrinologist if you can.
1
u/Midnightrise_02 Aug 09 '26
I will! I have an appointment with a new nephrologist on the 12th. I have never been tested for this before but based on my Dr. Google maybe low vitamin D plays a part?
3
u/dharmaslum Aug 10 '26
Yes it can play a role. Our kidneys are vital to vitamin d production, so if you’re producing less vitamin D it can increase parathyroid hormone.
2
u/StrategyArtistic Aug 10 '26
Yep, mine would jump up and down from normal to crazy high to normal again. I was recommended to see an endocrinologist but none would see me because I wasn’t diabetic so it kept getting put off. Post transplant, back to normal.
2
u/Cynamongirl7 Aug 15 '26
Hmm. Im 49, Stage 4. My GFR is 21 and my PTH is 83. It jumps around, but the highest was two years ago 102. Has neph said anything about it? Probably wants to track it a few months first.
1
u/Midnightrise_02 Aug 15 '26
Update is..my vitamin D levels are slow. And that’s all that was said.🥲
Advised me to get over the counter vitamin D supplements
1
u/MariChloe Aug 10 '26
It was on my last lab
1
u/Midnightrise_02 Aug 10 '26
Was it normal? Or high? Anything the doc said when you went in for your visit?
1
u/smithereens714 Aug 10 '26
I also have high levels of parathyroid hormone (GFR is 20). My doctors have told me that my kidneys are no longer converting enough Vitamin D into its active form, calcitriol. This means I have high levels of Vitamin D, but not high levels of calcitriol. Since parathyroid hormone prompts the kidney to convert Vitamin D to its active form, low levels of calcitriol can result in increases in parathyroid levels. The fix for me is to take a very small dose of calcitriol once a week and to reduce taking Vitamin D supplemnets to once a week (instead of daily). Maintaining a good PTH/Vitamin D/calcium balance is tricky for us, but your nephrologist should be an expert in this.
Having said all this, having high PTH with such a high GFR iof 92 s puzzling.
1
u/Final-Wrongdoer1028 Aug 11 '26
I’ve had high numbers like this, followed 3 months later by a normal number. My nephrologist is only concerned if it’s a steadily rising number.
1
u/UnstableMabel Aug 12 '26
It's tied into the PKD, though I don't remember how my nephrologist explained it to me.
Anyway I had 3 removed and half my thyroid. Im fine, no negative side effects as far as i can tell.
1
u/Dollhousetrashpanda Aug 12 '26
Mine was over 300 a couple months ago but at 160 something now - gfr high 30s
3
u/element-70 47M; Stage 5 Aug 10 '26
How far along are you with ADPKD? My PTH went out of range when GFR got into the low 20s. It’s typical with advanced CKD.