high blood calcium

[Winner76]

Hi Guys,

Is anyone on Mimpara for high calcium in blood. I’m transplanted and had a parathyroidectomy but still high calcium . The mimpara makes me very nauseous but it’s the only thing they’ve offered me. Has anyone had extremely itchy skin with high calcium.

Any input welcome

Tina

[LavenderRabbit]

Hi, I’m not on Mimpara. I just got my labs back and I have high calcium for the first time. Also low glucose. I don’t know what this means. I don’t have a doctor to ask. My doctor just retired and I haven’t gone to see your new one yet. I have an appointment with one in March. But the meantime I don’t know what to do with this. I don’t have itchy skin. Hope we both get an answer.

[Winner76 in reply to LavenderRabbit]

Hi,

I know hydration has a huge effect on calcium

levels , so makesure you drink lots of water for your next bloods. I’ve had high calcium since been on dialysis so surgery was the option for me but it didn’t cure it completely. I hope yours was a one off high result.

Good luck

[Jamok]

Hi,

Have they looked into what is causing the high calcium? Have they checked your vitamin D 1,25 levels which is different from the standard vitamin D 25 test and an ACE test? High calcium can be an indication of an immune disorder called sarcoidosis.

[Winner76 in reply to Jamok]

I have secondary parathyroid desease but it’s very annoying when I had the surgery , I’ve only a quarter of a gland left but still have high calcium 🤦‍♀️

[Jamok in reply to Winner76]

How do they know it’s from secondary hyperparathyroidism versus sarcoidosis? If the surgery hasn’t solved the problem, I would definitely look into sarcoidosis.. have they ever tested your vitamin D, 1,25? I have sarcoidosis, and it started with high calcium but my vitamin D 25 levels were low. It was not discovered that I had sarcoidosis until I tested my 1, 25 vitamin D, the active form of vitamin D which was through the roof.

is your PTH still high because that would make you spike calcium if it was due to parathyroidism?

[Winner76 in reply to Jamok]

God it probably is sarcoidosis, why not I have everything else!! 🤦‍♀️ as far as I know my PTH is still high but nothing like it was before. I’m getting it checked on Thursday so il add the vitamin D onto the blood form .

Thanks

[Jamok in reply to Winner76]

my PT H. is also still elevated after the transplant, but nowhere near what it was when my kidneys were failing! I’m 10 months out from my transplant. Are you taking vitamin D?

[Winner76 in reply to Jamok]

I’m 4 years in March , you’re still quite early on , how are you feeling? I was on One Alpha for a while after transplant they stopped it once I got steroid induced diabetes.

[Winner76 in reply to Jamok]

Hi,

Can you tell me what your symptoms were before you were diagnosed. I have itching, skin bumps, sore eyes and high calcium but I don’t have any issues with my lungs?

Thank you

Tina

[Jamok]

I think I was mostly experiencing symptoms from the high calcium which spiked to 12 plus after taking high dose vitamin D once a week. Fatigue, and loss of appetite and some weight loss and aching. When I was in the sun my skin felt like it was on fire but I don’t remember any itching but later, sarc showed up as rashes on my shins and joints. My lungs seemed fine but ct picked up tiny nodules that were mistaken for cancer until testing revealed I had sarcoidosis.

[Winner76 in reply to Jamok]

Ok thanks good to know