Questions for people who had calcium issues that lasted more than 2-3 months but recovered?

[u/artbystorms]

35 M. TT in May. Oncocytic TC in left thyroid, right was clear. Calcium issues due to losing two parathyroids across the 2 surgeries. Had bad symptoms but not 'hospital worthy' just constant buzzing and tingling in hands, aching that felt like it was in my arm bones and ankles, muscle spasms in arms and quads, never really got to tingling in my face though under my eye or mouth would twitch sometimes. The tingling was near constant and it sucked. Was taking 5-6 600mg pills a day for the first month or so just to keep it tolerable.

I was prescribed calcitriol in July by Endo, and it took a while but I think I mostly found a pill routine that works to keep the tingling and aches away all day. I am down to taking 600mg calcium citrate 3 times a day and spreading it 6 hours apart, so like 9am - 3pm - 9pm. I take the calcitriol with the morning and night calcium dose so I'm taking that roughly every 12 hours.

This has reduced the symptoms to almost 0, but my question is, outside of bloodwork, what are signs that it is improving overall? Does calcitriol sort of 'mask' that it is actually worse since it suppresses the need for PTH? I only see my endo every 2 months so I'm only getting updates on my calcium in those labs.

Did you experiment with reducing a little bit on your own? I've tried cutting my 3pm dose in half to 300 and that seemed to work for a couple days but then one day around 5pm I just had a sudden wave of tiredness / depression (like I was really sad / anxious but knew it wasn't a normal feeling) and developed bad tingling in my hands that lasted a couple hours, so I went back to a full pill.

[u/Poppy_Banks]

Mine was based on my bloodwork. I had tetany and ended up staying in the hospital for 5 extra days for IV calcium. We checked my calcium and pth and it slowly showed improvement. I was back in normal range at 7 months post OP and was able to stop supplements. With the instruction to watch for symptoms but beyond random tingling, I still get I'm good. I dont even treat the tingles at this point. they always stop. I'm 10 years post OP. I do have all 4 parathyroid, 1 had to be implanted into a muscle. They were all "stunned." My PTH was less than 1 in the hospital, and 7 months later, it was 49. It sits in the 40s now.

Good luck, I hope you get some improvement soon.

[u/i_was_clever_once]

So, my understanding is that calcitriol and calcium only treat the symptoms of your hypopara. Even on calcitriol, your pth will do what it naturally does, so continued monitoring of that should show if there's any improvement.

I also lost two parathyroids and they kind of picked up the slack after my surgery, but then gave up a few months later. My natural intact pth sits around 5, so unmedicated I get tingling, brain fog and muscle cramps but not dramatic crashes that send me to the hospital. I was on 10 pills a day between calcium and calcitriol, but my endo was able to get me approved for Yorvipath after a year.

Good luck!

[u/Grizz1984]

Do you have detectable PTH that's just low, or are you undetectable?

My Endo said that having detectable PTH before 6 months usually means that it will come back to normal.

It's not a rule though. I had detectable PTH at like 75-80% of normal and I'm 18+ months out I'm still on calcium supplements, but way less than I was - 2 alfacalcidol (activated vitamin D, similar to calcitriol I think), 1 vitamin D and 2x calcium citrate

[u/Dependent_Occasion58]

I was on calcitriol plus supplements for a few months and once my PTH came back up and my calcium labs were back in the normal range, I weaned off the calcitriol first and took extra Tums if there were any symptoms. I’d ask your endo for recommendations or to see if they’ll check calcium more often until you get off calcitriol. Most folks don’t need it forever unless their PTH is undetectable or doesn’t recover.

I don’t absorb calcium pills at all, no matter what form of calcium it is so we abandoned that idea. I do best on Tums Ultra, weirdly. I still take them because 1) I’m on multiple meds that can leach calcium from bones so supplementing isn’t a bad idea and 2) even with three a day, I’m barely registering a normal calcium level and I found a flavor I like. I do two at 9:30am and one at 9:30pm.

Another option that works, per my endo, is bariatric calcium supplements. They’re designed to help easily absorbed and they have a higher elemental calcium amount in them so lots of folks can take less of them for the same effect. I’d just get a doctor to help you figure out what the best amount is for you.

[u/SeveralMarionberry]

I developed hungry bone syndrome after losing a parathyroid gland during my surgery. My calcium blood levels are fine, but my bones are sucking it up and it’s not available for other things. I’ve been hospitalized three times with calcium crashes with the tingling that you’ve described (I also get seizures from it). I’m two years out from my surgery and I still take 1000 mg calcium 2x daily, calcitrol 2x daily, magnesium 1x daily, and vitamin D 1x weekly. I’ve moved from calcium chews to tablets and I like those much more. I take the first calcium four hours after my thyroid replacement because there’s a contraindication and if you take them too close, the calcium doesn’t absorb.

This is all a decrease from the initial amount of calcium and calcitrol, but we’ve found it’s the level that keeps the tingling at bay.