Anyone struggle with secondary hyperparathyroidism AND hypercalcemia

[ILMA54]

To avoid burying the lead (as they say), I would like to know whether any of you have experienced high PTH and high Calcium at the same time.

Like many of you, I have secondary hyperparathyroidism. Over the years, my doctors have treated it a few different ways

- When I was still in stage 3, I started with 50,000 IU/day of Vitamin D.

- Eventually, when things stabilized, and kidney disease progressed, I went down to 5,000 IU/day.

- Last year, as I moved in Stage 5, the OTC Vitamin D was insufficient, and my PTH climbed to 170 (Ca = 9.6), so my doctor started me on Calcitriol 1X/day.

- Three months layer, my Calcium levels went to 11.1 and PTH was 36, so my doctor reduced my dose to every other day, which brought my levels down to 9.6 (PTH = 139) 5 months ago.

- At my last next check-up, my calcium was 10.6 and my PTH was 116, so the doctor reduced my dose to 1X every 3 days.

When I was tested last week, my Calcium level had climbed up to 10.6, and my PTH was 175.

My understanding is that they should trend in opposite directions. For high PTH, one would expect to see lower calcium levels. BTW, my phosphorous has been 4.2-4.6.

Has anyone had similar experiences with high PTH AND high Ca? If so, how was it treated, and what results have you seen?

Thanks in advance for your response.

[Neona]

I have something along these lines and am waiting to see an endocrinologist. I had a catastrophic loss if calcium and raised PTH .Bit confused by it all and no answers at the moment.

[steve680]

"my phosphorous has been 4.2-4.6." - while those are at the high end of normal ("normal" being 2.5 -> 4.5), that is just one point in time. Sort of like a fasting glucose or random glucose only gives one data point or one "slice", as opposed to an A1C which gives an average glucose over a long period of time (last 3 months) and is more useful in terms of diagnosing diabetes, usually,

A PTH of 1116 is extremely high. You should discuss this with your nephrologist. The parathyroid glands try to maintain normal calcium levels and will increase PTH if calcium is too low.

In your most recent labs, your calcium is a little high 10.6 and your PTH is also high. Well, we can't make diagnoses on this website for a number of reasons but I would definitely discuss this with your nephrologist. I would be sure to ask him/her if he/she thinks it could be due to a parathyroid gland tumor. It might not be but I don't want to suggest anything more based on set of labs. Parathyroid surgery in patients with end-stage renal disease (ESRD) is an effective therapy for normalization or stabilization of calcium and parathyroid hormone (PTH) metabolism. So, be sure to ask about it and whether it applies to you at your stage of kidney disease.

I'm myself am stage 5 and dealing with high phosphorus and high PTH levels. My doctor prescribed phosphate binders and try to avoid foods with a lot of phosphorus in them: meat, fish, processed meats, beans, nuts, chocolate, dark sodas, dairy especially cheese, etc. All foods contain some phosphorus so a little bit unavoidable. The problem is that at stage 5 the kidneys do a not-so-good job at filtering out phosphorus and so too much gets in the blood stream.

Things you can do on an immediate basis to improve your numbers:

1) Eat a low-phosphorus diet, i.e. avoid high-phosphorus foods like dark sodas (Coke, Pepsi,etc.) and in fact most bottled drinks like Nestle's Iced Tea in a bottle (freshly brewed tea is OK).

2) Take your phosphorus binders with each meal (if prescribed).

3) Exercise (always good for your bones and circulation).

4) Get lots of fresh and sunlight (vitamin D).

5) Eat a low-protein diet (most protein sources like meat, dairy, etc. contain high amounts of phosphorus). Eat more vegetable sources of protein like broccoli and asparagus which don't contain high amounts of phosphorus. Also, phosphorus found in animal foods is absorbed more easily than phosphorus found in plants, which means more phosphorus will get into your bloodstream when eating animal foods.

6) Avoid processed foods as much as possible (phosphorus from food additives is completely absorbed -> high blood phosphorus).

7) Egg whites are great source of low-phosphorus animal protein.

I was told at stage 5, the nephrologist wants to see labs every 2 weeks and an office visit every 4 weeks. Ask your nephrologist what the frequency of your labs and office visits should be. You might want to keep a spread of your lab results so you can notice a trend (a trend is more useful than a single number), but most web applications which let you view your lab results can plot a trend for you.

Dialysis can remove some phosphorus from your blood, but it doesn't sound from the post above that you've started dialysis. In any case, good luck and keep us posted.

[ILMA54 in reply to steve680]

Thanks, steve680,

Decimal points do matter. I meant to say by PTH was 116. I will correct that.

Also, I have low albumin, so I have been told to push protein - at this point the goal is 1 g/kg body weight.

I do labs every 3 months. When my numbers starting trending down last year, I went to every 6 weeks until things stabilized.

I have been to dialysis education, and though they thought I would need to start earlier this year, my numbers have risen and remained stable.

[steve680 in reply to ILMA54]

BTW, I forgot to mention that one measure of high phosphorus in the blood stream is a lot of itching. That's one of the most common symptoms and doesn't require a lab test to detect. If you do itch a lot, it could mean your phosphorus is high. I assume your nephrologist has already put you on a low-phosphorus diet, is that correct?

[ILMA54 in reply to steve680]

Steve, I do have a lot of itching, which is more of an issue over the fall and winter, but my Phosphorous has also been in the normal range. Last value was 4.3.

[steve680 in reply to ILMA54]

Your PTH numbers are abnormally high; your doctor needs to do more testing to diagnose it and how to best treat it. As I mentioned above, it could be a number of things. However, anyone who's at CKD stage 5 should be on a low-phosphorus diet. That's all I can tell you.

[3Kidneys]

I have it too. They are still playing with the meds trying to find a fix. But just wanted you to know you’re not alone.

[Jamok]

I have high pth with borderline high calcium levels. My endocrinologist and nephrologist have looked into the possibility of primary hyperthyroidism (due to parathyroid nodule) vs. secondary(due to ckd). Results are inconclusive. I also have sarcoidosis which can raise calcium levels especially in the presence of vitamin D supplementation so my case is not straight forward. Have you had an ultrasound of your parathyroid glands? Have you had not only 25 vitamin D level but 1,25 vitamin D level(the active form) checked?