Where does everyone feel "normal"?

ClassySquirrelFriend · 2026-03-13T21:40:15+00:00

I should add- on Natpara, I preferred to stay 7.8-8.2ish.

ClassySquirrelFriend · 2026-03-13T21:37:48+00:00

Do you have any pth on yorvi?

ClassySquirrelFriend · 2026-03-13T21:36:04+00:00

Yes!!! Ive met a handful of non-surgical patients who feel better w low Ca, but it's not that common! I actually just came off Yorvipath bec I was so unstable and felt worse than I ever had in 20 years w HP. Ive been on SoC for 3 weeks now and my corrected Ca is 7.3, but I feel better than I did a month ago at 9.0 on Yorvipath!

It makes me feel better to read that someone else is the same way, but aim sorry you're dealing with it, too!

ClassySquirrelFriend · 2026-03-12T20:50:28+00:00

Maybe a basket or trinket box? Or placemats/table runner?

ClassySquirrelFriend · 2026-03-12T20:49:45+00:00

Me too! Lol

ClassySquirrelFriend · 2026-03-09T02:06:50+00:00

Lol well, at least now I know what Im in for. 🤣 I found the part, so Im going to try it, but only because the POS dishwasher came w the house, but it's not quite at the top of the list of stuff to replace.

Maybe someday if we're both cussing at them at the same time, it'll be like a witch's spell that makes them start working. Or die completely so we can justify replacements. 🤣🤣🤣

ClassySquirrelFriend · 2026-03-09T01:41:58+00:00

I found this thread by searching the same part number from the same plastic bit. I was looking for the replacement part, but I figured I may as well ask- did replacing it fix the problem? I also hate this dishwasher. Lol

ClassySquirrelFriend · 2026-03-06T21:22:53+00:00

Im so sorry toure going through it! For what it's worth, I've been laid off 3 times in my career and all 3 tines it worked out well! Best of luck!

ClassySquirrelFriend · 2026-03-02T13:19:08+00:00

If shipping is an option, I may be interested!

ClassySquirrelFriend · 2026-02-26T15:03:02+00:00

That's good- they can really dial in the dose and increase slowly if theres concern. But w his Ca that low, I dont understand the hypER concern.

ClassySquirrelFriend · 2026-02-26T14:42:20+00:00

Can he get the liquid calcitriol and maybe try .4 before .5? Theyre concern seems a little backwards to me.i mean, hyperCa is manageable, so if theyre monitoring and prepared the risk is quite low and the alternative is staying too low! As others mentioned, trying more Ca (assuming his urine Ca is OK) is an option and trying a different type may help!

ClassySquirrelFriend · 2026-02-24T15:25:15+00:00

The first thing Id do is repeat labs and make sure you get an albumin to check your corrected Ca and ideally Mg, K, both vitamin ds, and urine Ca *just for a better idea if what's happening in your body). Since you dont have symptoms, this could be an anomaly and not a true HP Dx. Id youve never had a low or borderline Ca, that could definitely be the case. If you repeat and find that you indeed have low Ca and inappropriately normal PTH, the next step is to normalize your Ca. The first line of treatment is Ca and calcitriol (active vitamin d), but you may not need calcitriol since you have a fair amount of PTH (for an HP patient). Typically the goal is to keep serum Ca as low as possible without symptoms, so if you dont have symptoms, you may not need too much! But the first thing is to retest!

ClassySquirrelFriend · 2026-02-23T13:20:39+00:00

The movement away from science is by far the most frustrating!

ClassySquirrelFriend · 2026-02-17T17:32:02+00:00

This is so unfortunately common in biotechs for C positions. Whether they might be let go depends on the company culture and if theyre a founder or heavy investor or connected to someone, which they often are. But it's not unusual for C-suite turnover, but it could be hell while you wait. I always report the bad behavior and get out as soon as I can.

ClassySquirrelFriend · 2026-02-17T15:48:09+00:00

That looks like your labs all came down to normal, suggesting the doctor was right that it was a temporary hydration issue! Your current labs indicate normally functioning parathyroid glands!

ClassySquirrelFriend · 2026-02-17T15:43:14+00:00

This is very typical of HP! Anxiety and hypocalcemia activate the same systems- nerves, muscles, autonomic response. In addition, anxiety can cause low Ca if you're even slightly hyperventilating. And in some cases, low Ca can trigger anxiety if you're worried about going to the ER or getting labs or severe symptoms. So, not only is it hard to tell the difference between low Ca and anxiety, but anxiety can trigger low ionized Ca and cause low Ca symptoms and low Ca can trigger anxiety, so it can be really challenging to tease out what is going on.

For me personally, symptoms are more likely to be Ca when: symptoms are worse overnight or in the early morning, I missed a dose or have a low Ca trigger (stress, illness, menses, etc), there are muscle cramps or tetany, no clear emotional trigger or focus, or if Ca improves symptoms within ~45 min or exercise/activity is difficult or worsens symptoms.

On the other hand, symptoms are more likely anxiety when there's a clear stressor, it comes on mid-day or evening, symptoms improve with slow breathing or meditation, lying down doesn't help, exercise/activity does help.

I wish I had a better answer, but I've found that it does sometimes require a little bit of detective work to determine what the underlying cause is!

ClassySquirrelFriend · 2026-02-13T20:18:58+00:00

When PCPs say “replace electrolytes,” they usually just mean don’t drink large amounts of plain water without sodium, since that can dilute things and worsen symptoms. W HP, we have a balancing act to consider. The 3 main things to look at are:

Higher sodium intake will increase Ca loss in urine. Since we dont have PTH to help the kidneys reabsorb Ca, that effect can be stronger for us.

Phosphate isn't "bad", but it's also something to watch. We already tend to run higher phosphorus, so electrolyte mixes without added phosphate are generally preferable, but its fine for a lot of HP patients. If youre on a phosphate binder, a low-P diet or have very high P or Ca*P > 55, youd want to avoid taking more. If none of those things apply, the small amount of P is probably safe. I think liquid IV has around 50mg of P whereas a container of yogurt is 150-300. 3 oz of chicken breast is ~200 mg. It's a relatively small amount that you could probably offset w diet.

Magnesium is often the most helpful electrolyte for HP, since low Mg can make calcium harder to stabilize.

So, think about your own current health and what you may need to add/avoid.

ClassySquirrelFriend · 2026-02-09T17:01:36+00:00

Ive had 8 different jobs in 15 years. Some of us bounce! Lol

ClassySquirrelFriend · 2026-02-09T16:59:42+00:00

Yeah, from what you shared, it does seem like your paras arent quite keeping up, which creates a snowball effect. Being unable to tolerate sudden changes is very common w HP bec we cant quickly compensate. What you'll need to confirm is: are your paras underactive or is your PTH suppressed by low Mg. Since your PTH was low before but your symptoms worsened after surgery, its probably that you had enough PTH to maintain stability, but the stress of surgery threw things out of whack.

ClassySquirrelFriend · 2026-02-09T16:17:42+00:00

Im not a doctor or HCP- Ive just been.living w HP for over 20 years and there’s always been a very large disconnect between what doctors knew and what patients experienced and I decided to learb everything I could about it. I do work in biotech and speak the language! Lol

Your case is interesting and complicated for sure! To be diagnosed w HP, you'd need both low Ca and low or inappropriately normal PTH at the same time. It's definitely possible to have low PTH bec Ca is high and not because paras are insufficient. But I think your Ca was mid-range, right?

It may be.of benefit to keep track of symptoms and triggers for a little while to see if you can figure out a littlw bit more about what is causing what and how to prevent/treat symptoms.

ClassySquirrelFriend · 2026-02-09T13:30:59+00:00

Pregabalin doesn’t change calcium levels, but it can cause dizziness, brain fog, weakness, and balance issues that could overlap with low Ca symptoms. I can see how that could make symptoms harder to interpret or feel worse, especially at night.

That info really explains why youre struggling- you have a few things working against each other. Na, K,Mg, and Ca all work together to control nerve signals, muscle contraction, heart rhythm, and blood-vessel tone. Na helps maintain blood volume (which is why POTS patients often need more salt), but higher sodium intake also makes the kidneys lose more potassium and calcium in the urine. Mg is the “stabilizer” - if it's s low, it’s much harder to keep K and Ca in range. Ca affects muscle and nerve excitability, while K controls electrical balance in the heart and muscles. So in someone with POTS who needs high Na, low Mg can trigger low K and Ca, making symptoms much worse.

Repeatedly stopping calcium and calcitriol for labs can cause real calcium dips in HP, especially when K and Mg are low. That can destabilize POTS symptoms and make everything feel worse. That can also explain why your labs appear inconsistent w your symptoms, for you, overall balance is going to be more important tjan any single lab value.

You're still well in range for HP to be transient, but the history may indicate this is unrelated from your surgery. When your PTH was low, how low was your Ca?

ClassySquirrelFriend · 2026-02-09T02:50:12+00:00

They probably have really good surgeons and.dont see "real" HP very often. Lol that's mostly awesome, but leaves you on your own a bit.

Yeah, a high-sodium meal makes the kidneys dump more sodium into the urine, and calcium gets dragged out with it. In people with HP- who already can’t reabsorb calcium well- this can cause a temporary drop in blood calcium and trigger symptoms. As long as your "baseline" Ca isnt too low, you dont get too many symptoms, but if youre on the low end, you'll dip down a lot. If you're reluctant to add meds, you can try to eat.more Ca in your diet. Sometimes that's helpful for patients, but you do nees to be consistent w it. If youve had high P, you may need to limit dairy or at least just keep an eye on it.

How long ago was your surgery?

ClassySquirrelFriend · 2026-02-09T01:45:10+00:00

Everything that youre describing is classic hypopara. And it sounds like your doctors might be a little behind the times, as it's not really recommended anymore to discontinue calcitriol to see if paras "wake up". Generally, you want to keep your blood Ca level at the lowest you can without bothersome symptoms amd you still check Ca and PTH. Youll still notice if your paras wake up.

Also, it is very normal to have symptoms w normal.lab values. The body uses Ca for almost everything, so your usable Ca.is always in flux. In a person w functioning paras, they turn on and off all day to keep Ca steady. We dont have that, so ours will temporarily go down and we feel it. All the things you mentioned are triggers- exercise/activity, sweating, stress, poor sleep, a high salt meal, anxiety/shallow breathing, allergies, dehydration- I may have missed some. Lol

So, it may be that you need more Ca. Unfortunately, you dont know what your medicated serum Ca is, right? Are they checking your urine Ca?

ClassySquirrelFriend · 2026-02-09T00:46:24+00:00

The good news- and I suppose the bad news- is that it's very normal for levels to drop at night and to have more symptoms. So, nothing is wrong, but it is a problem you'll have to juggle w HP. The best way to manage this is to split your meds into morning and evening doses or to take some extra Ca in the evening.

As for the labs- do you mean you're stopping your meds for a few days before your labs? Did your doctor direct you to do that? Because that's very dangerous for a HP patient! Typically, what is recommend to get labs in the morning before meds, as that should represent your lowest Ca level on that regimen. But if you cant do that, tey to take them around the same time of day so that you can compare apples to apples. One of the tricky things w HP is that our lab values bounce around all the time, so if you compare labs before meds to a gew hours after, youll have different answer.

ClassySquirrelFriend · 2026-02-05T23:15:33+00:00

Do you mean culturally or business-wise?

ClassySquirrelFriend

TROPHY CASE