New Parathyroid Issue

[Hawaiilover]

Hello,

At my recent visit to my nephrologist with labs, I found out that I now am having issues with my parathyroid. The normal value is 15-75 and mine went from 114.5 to 204.3 in the last 4 months. I have stage 4 CKD , high blood pressure and also IGA Nephropathy.(which I was told is not reversible) and the only thing I can do to slow the progression of kidney failure is to keep my blood pressure down. I am not over- weight, in fact I have been losing weight gradually since they told me to keep a "heart healthy diet" in January.(watch my protein portions, salt, dairy & potassium intakes) I went from 140lbs to 118lbs. I was told that I should now take a prescription Vitamin D, I currently am only taking a blood pressure medication and I really don't want to have to take any additional pills(even vitamins) and wondering if anyone else here is dealing with this and how it is working or not to get parathyroid hormone back in check. He told me I could think about it and let him know at my next visit as it isn't urgent I start now, but at the point where I probably shouldn't wait too long to do something before it gets too out of control.

Thanks for any input!

[Jayhawker]

Yes, I developed hyperparathyroidism a little over a year ago as a side effect of my CKD. I was placed on Rayaldee, a vitamin D medication, to address the hyperparathyroid condition at that time. Just be sure you ask about how frequently they will monitor your vitamin D levels if they put you on a medication like that. That sort of medication intentionally elevates vitamin D which is normally what is needed. But if the dosing is off the medication can cause vitamin D toxicity. Thus, they should be monitoring your vitamin D levels regularly while on the medication.

Otherwise, no real problems with the medication.

At this point in my CKD journey I often tell myself that I’ve got to provide my kidneys the support they need and my body needs to stay as healthy as possible and feel as well as possible. I’ve been in renal failure since the first week of January 2017 but am still not on dialysis, and, interestingly enough, I’m still taking very little medication:

Auryxia (for anemia)

Sodium bicarbonate

Furosemide (1-2 tablets a month only on an as needed basis if I have some fluid retention)

However, if I need more medication I’ll certainly take it. I’ll just be informed about the medication and it’s possible side effects. I’ll also double-check for interactions with other medications, etc. and I’ll certainly ask about needed labs etc and stay on top of my labs.

Diet

Fluid intake

Medications

These all need to work in tandem to support my remaining renal function and my body as a whole. That’s my mindset about all of this at this point.

Jayhawker

[orangecity41 NKF Ambassador in reply to Jayhawker]

My Vitamin D levels are low and taking prescribed Vitamin D supplement, and also have anemia, so far no needed treatment prescribed by GP.

[Jayhawker in reply to orangecity41]

That’s great!

[Hawaiilover in reply to Jayhawker]

thank you for the information.

[ashok5085]

Take cinacalcet

[Sca1]

I had this issue briefly,as well. High doses of calcium and Vitamin D as prescribed brought it back into an almost normal range, but it’s still being monitored. One more unexpected thing!

[Hawaiilover in reply to Sca1]

So do still have to take it? Is it just as needed?

[Sca1 in reply to Hawaiilover]

I still take it (For this and also osteoporosis) and parathyroid is almost normal.the doctor doesn’t seem concerned any more.

[Sca1 in reply to Sca1]

I take 3 tablets of calcium 500mgs combined with 400 mgs Vit D EACH daily. (1500/1200 total)

[Assiya in reply to Sca1]

I thought because parathroid the calcium is high in the blood, which is not good. So take more is that ok? Is vit k2 not needed to get the calcium in the bones like with vit d?

[Sca1 in reply to Assiya]

I’m. It sure. I’m just following my doctors instructions and it is working for me..

[Bet117 NKF Ambassador in reply to Sca1]

Thanks. Good to know!

[drmind]

My PTH had become increasingly high during the past year.. Two months ago, it was 1.94. I was put on a prescription medication (calcitriol) and as of this week, its down to 1.65. Ive had no problems wirh this medication other than it appears to be helping. I hope this information helps you make your decision whether to take it or not easier.

As someone noted earlier, its best if you decide to take the medication offered that levels of vitamin D are monitored.

All my best ans keep us informed..

[Hawaiilover in reply to drmind]

Thank you for the information. I will research some of the different type of vitamin D's that everyone said so I have additional information and will discuss again with my MD.

[Hidden in reply to drmind]

I take the lowest possible does every other day. My endocrinologist suggested it, but as the need is from kidney disease, I actually received the Rx from the nephrologist.

[Hidden]

I would not be afraid of vitamin D as log as it is not overdone.

[drmind in reply to Hidden]

I got the prescription from my nephrologist and trust he and Iwill be monitoring it. Seeing him Monday and will discuss it with him. Thanks

[HealthBuddyMelissa]

I have to take Vitamin D to keep my PTH in line.

[Hawaiilover in reply to HealthBuddyMelissa]

Thanks, from the responses it seems this is inevitable if you have CKD. I'll be talking to my Nephrologist more about it and probably start as well. I appreciate all the input on this site. It's comforting in a way to know you're not alone dealing with all this stuff. 💕

[horsie63 in reply to Hawaiilover]

Not sure it's inevitable. I'm stage 4 with a eGFR of 22 and my PTH, vit D levels have always been within range. I do get tested every 3 month just in case. I also have Graves Disease which causes hyperthyroidism but it's been in remission for years now.

[shpar]

Hello!

It seems our medical histories are quite similar. I also have IgA Nephropathy. And For the past 2 years I’ve been in between stage 3 and 4 CKD due to it.

I know it can be frustrating taking so many pills but the elevated PTH is just a secondary diagnosis due to the overall effects of CKD.

I’ve been on Vitamin D 50,000 for 2 years now. Taking it once a week. You might hear about Rayaldee which is kind of like regular Vit D but it’s extended release. My insurance didn’t cover it so I take Vitamin D instead.

Good luck and feel free to reach out!

[Hawaiilover in reply to shpar]

Thank you so much for the info. Yes, we are similar, you are the first I've seen with the IGA Nephropathy also, so good to know and I will definitely reach out to you again and you do the same, we are all in this together.

[Adriennebirder]

Hi, I also had a very high parathyroid and have Hashimotos. I don’t have high BP, not overweight and work out 6 days a week. They can’t figure why I have CKD. No diabetes either. I do take Vitamin D and Calcitriol and now my parathyroid is normal. You need to take Vitamin D and possibly Calcitriol.

Now she wants me to go off the Calcitriol and then retest the parathyroid. Low vitamin D causes many negative diseases. Don’t fight it take it.

Good luck

Adrienne

[Hawaiilover in reply to Adriennebirder]

I've been taking a vitamin D now for several months and it seems to be helping.

[Adriennebirder]

That’s great news!!!! Stay well, Adrienne