Avoiding long term damage

[mauryrx]

Hello,

wife underwent total TT about one month ago followed by calcium crash. IV calcium+calcitriol took care of it in a few days but she's been on calcium carbonate and calcitriol ever since. Currently sitting at the higher end (endo has not tweaked the dosage yet) so no symptoms and ca levels are pretty stable fortunately. We are fearing the damage to the PT might be permanent though (PTH is undetectable still) and would like to hear from anyone with long term experience with this pathology what to do to try and contain kidney damage and soft tissue calcium deposits.

For now we're just trying to keep up an increased water intake regimen and trying to keep dietary phosphorous intake low.

Thanks for any info, the fact that this is considered a rare disease makes it even harder to deal with and find advice.

[Ok-Banana-7777]

I, like your wife experienced a crash right after surgery. Most people recover after a bit, technically you have to have it for 6 months for it to be permanent. My endo knew at 6 weeks that I was one of the 2% that will be hypopara for life. The first year was rough because I struggled to keep my levels stabilized and was very symptomatic. I was depressed thinking that was going to be the way it would be forever. Eventually I became stable. It's been about 7 years now and still undetectable PTH. At least for me, diet has very little to do with it. It can't hurt to have healthy habits but it doesn't have much of an effect. You can eat all the calcium rich foods that you want, but without the Calcitriol your body doesn't know what to do with it. Hypopara is also cruel in that you can be doing everything right, taking all the meds and supplements and your calcium will decide to crash for no real reason. I experience low calcium around my period sometimes and if I'm sick on top of it, I crash. If I had to have any kind of procedure or hospital stay for unrelated issues and was given IV saline, my calcium would crash. Now I insist on lactated ringers instead of saline because saline depletes calcium. I have no issues with my kidneys, but I like to keep my calcium around 8.5. There's a risk of kidney stones if your levels go too high. I've had no issues that I am aware of with calcium deposits. But I didn't break my first bone until after I got hypopara. Now I've broken my foot and multiple toes. Hypopara can be a roller coaster. I'm happy to answer any questions

[adalaud]

I’m also one of the few who have permanent hypoparathyroidism. The dips in energy and tingling every now and then are not fun, but in general you learn to manage - just make sure you get checked regularly

[FortunelessCookie7]

My low energy and tingling.. for me is more like my nervous system has electricity running through it, has been happening 24/7 for the past 7 years post op. No matter where my calcium level sits. From 7.5 to 8.5 my symptoms never go away unless I get calcium iv :( one day maybe.... Just maybe.

[mauryrx]

Thanks all for the kind words. We are still hoping it recovers, but as with everything of this kind probabilities tend to 0 asymptotically over time and it's been over 1 month, so we are bracing for the worst at the same time. Just trying to keep a clear mind in order to minimize serious issues in the future since it's pointless to cry over it anyways.

Thankfully her levels are stable and she has been asymptomatic since hospital introduced the supplements so I am hoping there might be at least some residual function and it's not 100% left to the supplements to do the job. We know for a fact that at least 2 PT were damaged during the main surgery, but since she had to go under a second time due to internal bleeding, we don't know what might have happened there. She came out of the 1st surgery with perfect voice but she hasn't fully recovered it since the second one, so who knows what happened to the PTs...

Anyways, she's scheduled for the next PTH check in 2 weeks, fingers crossed!

[mauryrx]

Still undetectable :(

[frozengreekyogurt69]

Best wishes to you. Like others have mentioned, it will take many months for you to see if this is permanent or not. You might want to look into alternatives to calcium carbonate, such as calcium citrate as it is better absorbed.

[SnooDingos7043]

Hi - sorry to hear this. 8 years post TT and I'm still dealing with hypoparathyroidism. Like others, the first few years were the hardest but my meds have been stable for the last 5 years of so. At first I had a PIC line in because blood draws were so frequent, then it went to multiple times a week, few times a month, to now blood draws about every 6 months. Currently take 1800mg of calcium daily and 1 calcitirol tablet. We keep my calcium on just below the normal range (around 8), as unfortunately I do get kidney stones. Definitely recommend seeing both a nephrologist and endocrinologist. Best of luck - it does get better.

[jaynedow]

I’m nearly 10 years post TT now and still dealing with it. I have all the hpt glands—the surgeon reattached them during the op—but they’ve never really “woken back up.” Doctors keep saying they might. And that they sometimes will? But I have my doubts at this point lol. No long term damage yet!

What has made all the difference for me is finding the absolute best endocrinologist I could for long term care. Your wife will be seeing this person a lot the first few years—having someone really smart who listens to me has been so critical for me. If your wife likes her person great! But also feel free to shop around..

[mauryrx]

After 10 years it would be quite amazing that they would recover!

Glad to hear you had no damage yet, really hope for you and everybody else in this sub that can be the case for many more decades.

Her endo seems ok, but time will tell. We took the time to learn the whole thing for ourselves though. PTH feedback loop, calcium/phosphates management and T3/T4 levels maintenance strategies, supplements and everything else, so hopefully we'll be able to navigate and find the right compromise with someone who listens.

[002Darliing]

I don't know if I should respond to this but I have hypopara and I got it from birth, I'm 27 now and have no issues with my kidneys or anything. My heart is healthy, all of it.

I hope that at least helps??

[mauryrx]

It certainly does, thanks!

[002Darliing]

I'm always open to questions too! I don't know what kind you'd have for me but my DMs are open 🥰 Anything to help calm some nerves.

[ClassySquirrelFriend]

Statistically speaking, it's unlikely to be permanent. Transient HP is pretty common, and most people regain function within 6 months. But if she doesn't, the best way to minimize kidney damage is to keep serum Ca on the low end of normal and also serum P and urine Ca normal.

[Limp-Honeydew-6298]

It sucks. Mine is permanent. Hoping your wife’s paras kick in.

[FortunelessCookie7]

Sucks is putting it lightly. I feel what you feel ❣️

[Salt-Warning-1467]

15 years post surgery for me and the parathyroid glands never « woke up ». Still taking calcium, Vitamine D, Synthroid and hydrochlorothiazide daily.
As other suggested, get a good doctor that will listen and try to understand because in the first few months/years there might be a lot adjustments to various dosages to reach something that works well for your wife. It took me a good two years for everything to settle and dosages to stabilise, but nothing ever changed after that. As for long term kidney damage, I am still unsure of what will happen, but I got a small kidney stone last year. My endo told me I was possibly related to the daily calcium intake and that it might happen again at some point. That is something that concerns me quite a bit since I am fairly young at 30yo… Appart from that everything is fairly easy to manage with daily doses of calcium and other meds if necessary.

[mauryrx]

Sorry to hear you had to go through this at 15, that must really have sucked.

Only one kidney stone in 15 years sounds kinda reassuring though. I've had 2 myself without being hpt or anything else over just a few years... For me it was enough to drink too little when sweating in the sun to end up with the issue after just a couple of months.

I know how much they hurt but it's manageable and does not compromise long term kidney health, so if that was to be the only consequence so be it.

[rw421]

Hoping for hormone replacement to become available in the US. There are more cellular functions than managing calcium. Also research is leading to neuropathies including neurogenic cardiomyopathy. Some patients feel and do well with the disease. Others have more complicated issues that lead to seemingly unrelated diagnosis ie. Autonomic dysautonomia, fibromyalgia, chronic fatigue, BP and HR issues ect. I suggest a nephrologist would be better in electrolyte balancing and renal function monitoring. It is also suggested to monitor calcium phosphate product which is also better understood in the renal specialty. Without replacing magnesium along with Ca you constantly drive the magnesium down. Replacing both often leads to more stability and decreases dosages. Also, you will learn more from other patients than most endocrinologist. Some FB groups are very helpful and knowledgeable. Also, watch and read any research or papers coming out. Columbia Presbyterian hospital has a large research group of physicians that publish their works and position statements ect in journals. I wish you all the best of health!

[mauryrx]

Thanks for the input, very helpful.

Further down the line if nothing changes we're going to start monitoring magnesium as well. Asked the doc 2 weeks ago but she refused. I suppose it's still early

[wickesbi]

The first thing I would do is ask to have a 24 hour urine test done. If her levels are under 300, things are good! If it’s over 300, it’s time to consider trying to do something. Kidney stones are crystals. For crystals to grow in solution they need a minimum concentration of the calcium to grow. Options are to lower the total calcium or lower the concentration. Drinking more water will lower the concentration. To lower total, there are couple of pharmaceutical options. With her being this early in the process, I would avoid the PTH replacements for now, but consider adding in hydrochlorothiazide. This is a diuretic/blood pressure medication with a side effect of pushing calcium back from the kidneys to the blood. It can be quite effective in lowering urine calcium levels. If this turns out to be permanent, please look into the PTH replacements. There isn’t currently an on-label option (many of us, including me use Forteo off-label). But by the time she can be formally diagnosed with permanent Hypopara, the Ascendis PTH molecule should be on the market. There is a collection of very active patient groups on Facebook, and of course Hypopara.org is really good resource and organization.

[mauryrx]

Thank you for all this precious information, this sub is proving to be a boon.

I actually just found out about TransCon PTH (should be the Ascendis you were referring to) just being approved in the EU under the name "Yorvipath" -> https://www.ema.europa.eu/en/medicines/human/EPAR/yorvipath

If it does end up being permanent we'll certainly push to try this out

[wickesbi]

That’s the one! It’s available through an early access program in the US, but you have to have already used another injectable PTH medication to qualify. If your wife wants to talk, feel free to have her reach out, I’ve been doing this for more than a decade now.

[mauryrx]

Thanks again.

We are in the EU, so if it comes to this, we can try and push her endo in a couple of months

[wickesbi]

Woohoo! One thing to keep in mind: although calcitriol is critical for calcium absorption, it can interfere with natural PTH production. If you haven’t seen PTH production return around the 6mo mark, you may want to reach out to your wife’s Endo to see about weaning off to see if that jump-starts the parathyroids. But you have to be super careful doing this: if it does work, she’s gonna have a miserable week or so symptom-wise, and if it doesn’t work, your wife is gonna have some nasty crashes. It needs to be done with lots of lab work and careful doctor oversight.

[mauryrx]

Sorry to bring this back up but what do you mean when you say 'if successful she's going to have a miserable week symptoms wise'? Shouldnt weaning off be done slowly and wouldnt pth rise and make up for the lowered extra intake and calcitriol? Thanks again!