Hyperparathyroidism, PTH intact

[Bassetmommer]

Does anyone else have high PTH intact levels? If so, what is your level and what stage CKD are you and what treatment are you taking? What, if anything did you doctor say about it. My PTH has been rising. One article says it is because of CKD and another says it causes CKD.

[Sammi_n_Munk]

I have to admit, I’m not even completely sure what the function of the parathyroid is. I have a cousin who has had hers removed, and ever since that, she has had low sodium levels that cause her to feel awful, and she has even passed out from time to time because of it. She didn’t really say why she had it removed, and why it has caused such low sodium levels, but it sounds pretty scary to me. My doctor has never mentioned any issues with my parathyroid.

[Jamok]

Hi Bassetmommer, yes, I have high PTH for a while now and the increase in pth hormone seems to correlate with worsening kidney disease not the other way around so it has been deemed secondary hyperparathyroidism. Primary hyperparathyroidism is due to an adenoma on your parathyroid gland. This type can eventually affect kidney function. What is your calcium? Typically calcium is high above 10 consistently when you have an adenoma.

[wheezoids21]

Hi. Im at stage 4, border 5 and my pth is 180. Calcium and phosphorus normal, which means that the parathyroid is pulling calcium from my bones as Ca levels decrease as a compensatory mechanism. Eventually vit d, calcium and phosphorus will all be out of whack and pth level renal high, which I believe is the point where supplements and dietary restrictions kick in. This is my understanding of how this works.

[Bassetmommer NKF Ambassador in reply to wheezoids21]

Yup you are correct. So at 180, are they making you do or take anything. Do you restrict foods and if so what? Do you take any supplements like VIT D or calcium supplements? My doctor said when my level went over 170 to try taking Tums. I did not because I did a quick look and saw they were supposedly bad for CKD. They actually are prescribed for CKD as a phosphorous binder and safe. So, I just started taking Tums. I see the Neph next week.

[wheezoids21 in reply to Bassetmommer]

Hi...nope not taking anything as of yet because apparently if you do that too early you can end up with adynamic bone disease. So we are waiting for the shift in phosphorus and or calcium and vit d. My dr tells me that theres high normal and renal disease normal so the upper range for us can run as high as 600 before the changes happen and anyone starts to worry. It"s an aspect of ckd not fully understood yet in order to try and treat early.

[Bassetmommer NKF Ambassador in reply to wheezoids21]

OMG 600 is so incredibly high. I am not even close. I guess I should wait until I see the Doc.

[KidneyCoach NKF Ambassador in reply to Bassetmommer]

Well docs have come a long way in treating this. The first 8 years of dialysis my doctor refused to treat properly. I had NORMAL phosphorus and calcium yet pth averaged around 1200-1500, causing calcium deposits in fatty tissues for me which went on for SIX (6) YEARS. Once I transferred to a new nephrologist my levels were 3500. I finally felt like things would normalize. By then the damage was done I had multiple compression spinal fractures, now ĺoss of ⁶ inches in height. Get treatment sooner not later. Pt hormones keep phosphorus and calcium levels normal. If your phosphorus is high then it remòves calcium from bones and puts into blood. If calcium is too high they remove calcium from blood to normalize the phosphorus. Sometimes pth goes into hyperdrive like a car may get stùck in overdrive and removal of 3-4of the small pea sized glands is only solution. Don't fret over levels under 300. Do take action at levels of 600 or higher. JMHO. Blessings

[Bassetmommer NKF Ambassador in reply to KidneyCoach]

Thank you so much. So sorry you went through what you did. But you have reassured me and I do want you to know how much I needed that.

[drmind in reply to Bassetmommer]

About 4 years ago, I had high PTH and my new kidney doctor put me on vitamin D2 daily and calcitriol 5x a week. Then, as a few months went by, he titrated the calcitriol to 4 x a week, then 3x, and then 2x and eventually none when PTH level was normal. I'm not sure if I had primary or secondary PTH. At the time, I was hovering between GFR 3 and 4. I'm 3b now. My primary and a former kidney doctor initially did nothing.

I'm not near my records now, but I can check tomorrow if you want more specifics.

[Bassetmommer NKF Ambassador in reply to drmind]

Oh this is great news. You went to a GFR of 3 and 4 and they didn't throw you on dialysis? YOU are my hero! Was the calcitriol the only thing that they gave you and it brought your GFR that far up or did you do other things as well. And when you can, I am curious as to what your PTH was, if you can check.

[drmind in reply to Bassetmommer]

I hope I can give you the information that you need.

My current egfr is 32. I can't go back to when my PTH was high to get the gfr then because at that time they were doing gfr and not egfr and I cannot access the gfr now. But, I do recall that my gfr dropped to 25 around that time, but I'm not sure it had anything to do with the PTH. I had serious problems with a new medication and with two bad infections at the time. Slowly, I came back to gfr 30 and have stayed in gfr 3b since then.

In June 2020, my PHT was the highest at 122 and my calcium was around 9.8. PTH gradually dropped to normal from 2020 to 2021/2022 when my kidney doctor was titrating the calcitriol and had me take Vitamin D2 daily. I stopped taking the calcitriol sometime early last year, but I continue to take Vitamin D2 daily.

Other data that may be important: the only medium problems I have is hypertension which is fairly well controlled with Valstartan/HCL and Metropolol along with back issues and a hiatal hernia. All my labs usually fall in the normal range except the kidney and cholesterol ones.

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Quest lists this as an explanation for PTH and calcium:

Interpretive Guide Intact PTH Calcium

------------------ ---------- -------

Normal Parathyroid Normal Normal

Hypoparathyroidism: Low or Low Normal Low

Hyperparathyroidism:

Primary : Normal or High High

Secondary: High Normal or Low

Tertiary: High High

Non-Parathyroid:

Hypercalcemia Low or Low Normal High Show Less

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I think I was diagnosed with secondary PTH at the time. Hope this helps. Let me know if I can find other data that you may need.

[drmind in reply to drmind]

Sorry. I just realized the Quest info didn't print as a chart that I printed. Hope it's understandable.

[drmind in reply to drmind]

Oops Vitamin D3

[KidneyCoach NKF Ambassador in reply to Bassetmommer]

Meds for hìgh and hyperparathyroidism calcitriol, cinacalcet, VitD even ergocalciforal. Dialysis is not recommended until creatinine is around 10 or stage 5. If you have high pth while in stage 3-5 it's likely considered secondary parathyroidism. If you don't have CKD it's likely Primary. Have a conversation with your doctor, ask questions, Blessings

[Sammi_n_Munk]

I found this link regarding the function of the parathyroid gland. I know that much of online information can be conflicting and difficult to believe due to the contradiction, but I hope this will be a little helpful. 😊👍

hyperparathyroidmd.com/can-...

[Bassetmommer NKF Ambassador in reply to Sammi_n_Munk]

Thanks but I disregard anything that comes from a for -profit surgery practice. Most of the info they had is correct, but they want to scare you into surgery.

[Sammi_n_Munk]

You’re right! I’m sorry. I should’ve been tipped off by the, “Book your appointment” statement at the very top of the page! Lol! I only noticed this now. 🙄

[Jayhawker]

hi Bassetmommer,

I have high PTH. This began as a secondary condition with my CKD after I’d been in renal failure for several years. My calcium and phosphorus oi toys were still no Irma’s. My nephrologist put me in a medication called Css as lcitriol. He said if medication didn’t work they could ultimately remove some or all of my parathyroid glands. That hasn’t been necessary.

Now, 4+ months post transplant my PTH is still high. They no longer have me taking calcitriol. But I’m taking vitamin D3. They have just prescribed a medication for this. I honestly can’t recall the name right now. But, there are various medications they can prescribe.

Jayhawker

[chicablue]

Hi Bassetmommer. Yes My PTH intact is 167. It has always been high and they dont do anything about it! I have been stage 5 since oct 2018

[rabbit01]

That's interesting. My PTH is very high. I was prescribed alphacalcidol to try and control it but it keeps going up. Never heard that it can cause kidney problems.

[ICE187 in reply to rabbit01]

ncbi.nlm.nih.gov/pmc/articl...

kidney.org/atoz/content/sec...

[ashok5085]

Only medicine to control high PTH is Cinacalcet. I have been taking it for last 2 yrs and it is very effective.

[MPJ1]

I have been stage 4 for the past year. My PTH hit 210 about 6 months ago. My Dr prescribed Calcitrol, and have improved my numbers

[RhenDutchess123]

I had 3 of my 4 Parathyroids removed about 7 years ago....so glad I did..At stage 5 on Dialysis I don't have the bone and mineral disease that most at my Stage have.. The Surgeon told me my Hyper- Parathyroidism caused my Kidney Failure...I believe him...

He also said taking Vit D Therapy was the worse thing I could do...my PTH before Surgery was over 400 for many years...it now sits at a nice 40 to 56 and Calcium levels at 9.5

Hyper-Parathyroidism makes you b$tchy and paranoid

[PecanSandie]

This is my favorite topic because it's such a mystery. My PTH level seems to go up and down. In Oct 2021 it was 97, in April 2022, it was 193, in Aug 2022 it was 161, last October 227, and just recently 171. I started off taking Calcitriol 3 times a week and my nephrologist upped it to every day because if the high PTH. My endocrinologist at first though I had primary hyperparathyroidism but has now changed her mind and thinks it's secondary hyperparathyroidism. She asked me if I had changed my diet because it went down so much (but I don't think I changed anything). My blood test Vitamin D level hovers between being slightly too low and just fine. My osteoporosis/osteopenia seems to be improving a bit from taking Ibandronate. In November my endocrinologist did a PTH Intact Test, Without Calcium and the result was 75 which is in the normal range. So calcium definitely plays a big role in all this which brings me to the topic of calcium supplements. Do you take or don't you? My primary care doctor wants me to get 1/2 of my calcium from supplements. My nephrologist says I don't have to, and my endocrinologist is still trying to decide whether its primary or secondary (lol!).

[Bassetmommer NKF Ambassador in reply to PecanSandie]

Hi and I love your name. It is my favorite cookie. The thing with absorption of minerals is a chronic issue with me and I assume many with CKD. I do not absorb much from food ( accept fat, seems there is no issue there) But iron, b12 and other minerals, I do not get enough from food. I have used supplements and for some reason, they seem to work better for me.

And I looked at my chart and my PTH bounced for years, something I did not notice until you said this. The last four labs though it has climbed from 140 to 200. But the lab before was 78 and then before that 134. Jeepers. But the steady incline is not good. My Vit D is steady, but low normal. My phosphorous has been at 5 or above for years. Matter of fact, it is lower than it was in 2020. So confusing.

[PecanSandie]

I love your name also - we are low rider fans too...corgis.

Parathyroid-wise, It sounds like we are in the same boat! I am mystified by the bouncing PTH also. If it's regulating calcium then it's doing a really bad job. I don't think I am doing anything weird to cause this to happen. Have you had a Dexa scan to check your bones for osteoporosis/osteopenia?

[Bassetmommer NKF Ambassador in reply to PecanSandie]

PecanSandie. I LOVE Corgis. I hope to make that my next doggie. I had Bassets for years but they are too big for me now. I have two 20 pound muttlies now. I have Psoriatic Arthritis so my joints are crap. I have never had a scan but I have had ultrasounds for the PsA.

[GoldenBailey]

Hi Bassetmommer, my last PTH was 385. I have severe mineral bone disease; however, my nephrologist is NOT addressing my PTH at this point. Phos goes in and out of normal, pot is normal and Vitamin D has been low for years and years. I do take an over-the counter- Vitamin D two times a week. I'm Stage 4.

[Bassetmommer NKF Ambassador in reply to GoldenBailey]

Wow, curious why they are not addressing the PTH. Is the bone disease from the PTH or another cause? Thanks for the reply.

[GoldenBailey in reply to Bassetmommer]

He talked about possibly addressing at one point but didn't move ahead with it. They believe my bone issues are related to the chronic kidney disease. I have also spilled extremely high amounts of protein for years.

[Hidden]

Hello Bassetmommer. I'm attaching a jpg of the spreadsheet I've been keeping of certain lab results from over the past 6 years. I know my PTH was of big concern when I started hemo and I never really paid much attention to it. Looks like my Neph was checking it more often when I was on Hemo and now just every so often. I have not been given any supplements for the CKD such as potassium or phosphorus binders. I see him in two days and I will ask him about PTH and why it's important to check. I was DX with Wegener's disease in 2017 and that was the start of my CKD journey.

Larry's Lab results

[KidneyCoach NKF Ambassador]

If you really want to understand hyperparathyroidism and how it work takes a look at the module in kidneyschool.org which covers the details in full. kidneyschool.org/m16/

[PecanSandie]

I thought this might interest you. In February my PTH level was 171. I just had a PTH test on Monday and my PTH level was 111. The only thing that changed is that two weeks ago I started taking 600 mg of calcium daily (which is what my primary care doctor originally wanted me to do) . I have an appointment with my nephrologist tomorrow so I will get his opinion about this development. I'm thinking it may have more to do with osteopoenia than with CKD.

[Bassetmommer NKF Ambassador]

That's good news. What type or form of calcium are you taking. My Neph suggested I start with Tums.