Has anyone experienced or is familiar with a high PTHrp?

Posted by sprad66 @sprad66, Feb 28, 2023

Hello, I am a 56 year old female. I was diagnosed with Hodgkins Lymphoma in 2006, underwent chemo and radiation, been in remission since. I saw my primary MD for a few different issues, bloodwork showed my calcium level up/down over last summer. Referred me to Endocrinologist for Hypercalcimia. She wasn’t too concerned looking at my bloodwork but ordered a PTHrp (parathyroid hormone related peptide). It came back high, referred me to oncology as this usually signifies a malignancy. Oncologist ordered Pet/Ct and additional blood work in addition another PTHrp. Scans did not show cancers, all bloodwork good except my PTHrp is even higher. Seeing Endo again next week. Has anyone experienced high PTHrp? It can in some cases be related to parathyroid but I’m concerned about a cancer not being seen.

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raremiracle2 | @raremiracle2 | Feb 28, 2023

Googled PTHrp (don't have it) Educational
Definition The parathyroid hormone-related protein (PTH-RP) test measures the level of a hormone in the blood, called parathyroid hormone-related protein. Its role is in maintaining calcium levels in body. High PTH means that one has hyperparathyroidism which in Indian scenario is commonly seen with vitamin D deficiency (secondary hyperparathyroidism). Other common cause is adenoma of parathyroid gland (primary hyperparathyroidism). Normal values of Intact PTH need to be between 15 and 65 pg per ml. Low levels of PTH could be due to high calcium levels or abnormal production of PTH, or to an abnormal production of PTH caused by a gland malfunction.
How are you feeling? What are your symptoms?

sprad66 | @sprad66 | Mar 1, 2023

I feel worn down., get tired very easily. I have light headiness off and on, sometimes confusion. My chest often feels heavy and I am having trouble weight. I have a sister who had breast cancer twice and after several years of issues after all the treatments and surgery’s ended up having to have 2 of the 4 parathyroids removed that showed benign tumors. I see my Endocrinologist next Wednesday.

Colleen Young, Connect Director | @colleenyoung | Mar 11, 2023

In reply to @sprad66 "I feel worn down., get tired very easily. I have light headiness off and on, sometimes..." + (show)

@sprad66, how did the appointment go with the endocrinologist? Any updates?

sprad66 | @sprad66 | Mar 12, 2023

It was a waste of time. She said that my calcium and PTH are normal. With the PTHrp high oncology needs to follow. She did speak to the lead doc of Oncology and he basically said that since the pet scan didn’t show any signs of cancer, except for following up with a repeat blood work in 3 months and CT in 6 months, nothing more to do. So frustrating knowing that the high PTHrp is a “marker” but no other resources to indicate WHY or WHAT is causing it to be high. So a wait and see I guess.

Colleen Young, Connect Director | @colleenyoung | Mar 12, 2023

In reply to @sprad66 "It was a waste of time. She said that my calcium and PTH are normal. With..." + (show)

That is frustrating for sure, but possibly not a waste of time if they were able to rule out cancer. Like you, I would find it unsettling to have a marker be high, but our bodies can do odd things or it may even be a lab anomoly. It's good to follow up with repeat blood work and CT scan.

sprad66 | @sprad66 | Mar 13, 2023

Thank you! Yes, definitely so thankful no signs of cancer.

geralyn1601 | @geralyn1601 | Apr 22, 2023

My husband has MGUS and amyloidosis and received treatments and then a stem cell transplant in July 2022. His calcium went up a bit and so they did the PTHrP as well. It was elevated. They then did a PETscan and found nothing. They repeated the PRHrP and like you it was even higher. The oncologist he sees is not wanting to 'chase the lab value', but like you we are concerned for this positive marker for cancer after what he has been through. We see the oncologist again soon and I'll let you know if we hear anything new. They are doing a urine cytology and may do a prostate MRI because the regular PET scan he had may not show these cancers in these areas. That's according to a second opinion we got from hematology/oncology dr that he has seen before. Good luck to you. You are so right how frustrating it can be not to know what's going on.

Colleen Young, Connect Director | @colleenyoung | May 2, 2023

In reply to @geralyn1601 "My husband has MGUS and amyloidosis and received treatments and then a stem cell transplant in..." + (show)

Very helpful information @geralyn160. I'm tagging @sprad66 so they see it.

Geralyn, I'd like to hear more about you and your husband's stem cell transplant. Might you be willing to add it here?
- My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

maneko | @maneko | Sep 18 8:37pm

Hi @sprad66 , not sure if you will get this notification as it's been quite a while. I'm going through this same thing. I'm 28 female and very anxious. All of my blood work came back normal except I do have very high PTHrP. It is 7x the normal limit... I went to Endo and they are referring me to Oncologist. I'm very scared at this point... Have you gotten any answers yet?

Colleen Young, Connect Director | @colleenyoung | Sep 26 11:48am

In reply to @maneko "Hi @sprad66 , not sure if you will get this notification as it's been quite a..." + (show)

@maneko, I can imagine you're nervous and scared. Have you had the appointment with the oncologist yet? How are you doing?

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