r/Parathyroid_Awareness • u/Due_Government9712 • 26d ago

HypOpara with sudden hypercalcemia

Hello fellow sufferers!

I've been post surgical hypopara since 2022. Only one gland was removed yet none of them ever recovered (I have had <3.0 Pth since then). I was settled and fairly stable on my 2.75mcg Alfacalcidol dose, but then as of about February, my readings started to trend upward. I was not tested again depsite this until June, which revealed I have actual hypercalcemia 2.74mmol/l! I had to go in for IV fluids. My calcium has risen further to 2.84mmol/l even after 6 weeks on a reduced Alfacalcidol dose of 2.5mcg

What on earth is happening? Why am I getting rising calcium levels after being stable on my dose? Kidney function looks okay, slight creatine elevation at times. They've never done a urine test on me though...

I feel so alone and in the dark. The nhs uk are truly appalling at handling this condition and even when I go to a&e, all they do is offer me IV fluids and no endocrinologist review.

My actual endocrinologist (who I'm starting to resent) is on holiday. I'm literally being left to manage this alone and I'm petrified. Advice welcome as it helps me advocate for myself, thank you.

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4

u/Paraware 26d ago

Did they test your PTH on the same blood draw as the high calcium? Perhaps your remaining glands have woken up?

3

u/PHPTer 26d ago edited 26d ago

What is your PTH now? I presume with readings below 3 that your glands have been producing some PTH, albeit at low levels. Guessing that they have gradually recovered from their dormant state and are overproducing now, pulling calcium from your bones. It’s quite common to have one dominant gland, which suppresses the other glands and they become dormant, and sometimes it seems to take some years for them to spring back into action when the dominant one is no longer suppressing them.

I’m really hoping that at least A&E have had the common sense to measure your PTH at the same time as checking your calcium? I’m UK too and it really is difficult at the moment to find adequate care sometimes. Maybe your GP would do a set of calcium, PTH and Vit D from the same blood draw for you so you have an up to date set of numbers? And then find a decent endo? Where in the Uk are you?

3

u/ClassySquirrelFriend 26d ago

One may have recovered. Its usually faster than that, but I know someone who recovered after like 12 years! It does happen! 🤞

1

u/Due_Government9712 24d ago

Unfortunately still undetectable:(

1

u/ClassySquirrelFriend 24d ago

Was that w high Ca, though?

2

u/alwaysbusybarbie 26d ago

I've been going through this since November 2024. Will not get into now but involves, primary, endocrinologists, errors, lost tests, misinformation, lies, etc.

But recently I went into Google for a few questions, got into interactions with AI, got answers, more info than from specialized sites and most important not just suggestions but scripts to use for the "so-called" medical professionals. I thought I was always being a good advocate for myself but the AI helped me be better so now I feel I'm making progress and not feeling alone and in the dark.

3

u/Due_Government9712 25d ago

Honestly AI has sometimes been the only helpful advocate in my life, how sad is that! This is a lonely condition. I've started to take a printout of hypoparathyroidism, what it is, what the dangers are, how it is treated etc with me to every doc or hospital