Thyroid Cancer Group: Introduce yourself and connect with others

Thanks @colleenyoung!

I agree, @danielad. You can post your questions to the Endocrine System group here: https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

@colleenyoung -- Colleen, I wonder if there may be a "better suited" group for my question? I guess I could create one by establishing an "ENDOCRINOLOGY" group. It could be the "umbrella" group for a number of different endocrinology-based medical issues or questions?

Different question: The Nephrologist has ordered labs for Aug (2-months check-up) which do NOT include a repeat test for the PTHrP. I think I should ask him to add it. What are your thoughts on that?

Thanks!!
-- Dee

@colleenyoung -- Thank you Colleen. Yes, I read the same article and wondered if mine was a "false-low" result. I didn't think the doctor was prepared to discuss the issue with me, so that's possibly why he initially told me he was ordering the "Sestamibi scan".

Thanks Colleen!

--- Dee

Hi @danielad, that is a question outside of my knowledge. I couldn't find much about low levels either.

However I found this information by Mayo Clinic Laboratories:
- Parathyroid Hormone-Related Peptide, Plasma https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/81774
As you noted, it is an elevated level of PTHrP that can indicate a need for further investigation for a malignancy.

Of particular note are the last two sentences
"Like all immunometric assays, PTHrP assays are susceptible to false-low results at extremely high analyte concentrations ("hooking") and to rare false-positive results due to heterophile antibody interference. Therefore, if test results are incongruent with the clinical picture, the laboratory should be contacted."

You said that this was the first time that your PTHrP was tested. Is it possible that is was a false low?

@colleenyoung - Hi Colleen, I wonder if you can point me in the right direction. I am looking for information regarding "LOW" Parathyroid Hormone-Related Peptide (PTH-rP). I found a lot of information about High PTH-rP; however, did not find anything regarding Low PTH-rP.
Here is the reason for my request:

As you may remember, I have had Melanoma and more recently, Breast Cancer. In July 2019 (right before the discovery of my breast cancer), routine labs found High levels of Calcium. My PCP tested the PTH level, which was normal, so nothing else was done. In March 2020, I was admitted to the hospital with nausea, vomiting, and hypercalcemia. The Nephrologist on staff, now my doctor, has been looking for the cause of the Hypercalcemia since that time.

Labs in mid-April showed High Calcium, but Normal PTH and Phosphorus. Labs in mid-June showed the Calcium had decreased to the “upper limit” of Normal: "10.4" (Quest range: 8.6-10.4 mg/dl). PTH and Phosphorus were Normal. However, the PTH-Related Peptide (measured for the FIRST time), was very low: "8 pg/ml" (Quest range: 14-27 pg/ml).

The Nephrologist is puzzled. Because of the low PTH-rP, 3days ago he decided to order a "Sestamibi scan". However, by the afternoon, he had changed his mind; he now wants to wait another 2 months and get new labs to see if anything changed. I really don't do "waiting" too well; so, in the meantime, I would like to understand more about the low Parathyroid Hormone-Related Peptide.

Thanks Colleen!

-- Dee

Sorry what you went with a BAD doctor ☹️. It's all too common that doctors don't diagnose correctly Worse yet is they don't care. And they get paid automatically. And the poor patients are too sick 😷 to do anything about it. Good on you for finding a REALdoctor

Sorry, I gained 70 lbs, not 7, god I wish 7!

I know my surgeon took out my parathyroid also, but he cleaned it up got clear margins and transplanted it back in me at the end of my surgery. it took about 2 months for it to wake back up and attach so that it would work and now it is fully functioning. It would be worth asking if the surgeon knows how and is willing to transplant it back in there. I had my whole thyroid out, I will take medicine for the rest of my life also, and I will say it has been a very hard roller coaster ride of ups and down(seemed like more downs). When I go though my yearly whole body scan I actually have to go old school and go off meds for 6-8 weeks hair loss, weight problems, energy drop (sleep at least10 hrs a day) brain soggy (hard to remember my name) and all the other side effects of no thyroid, because of an allergic reaction to the Thyrogen injections which has prevented me from having radioactive iodine treatment, its a very hard process...but in the end I gladly do it as I am still alive to watch my kids grow, to spend more time with my husband and extended family. If given the chance to do it over, I would do it exactly the same...it's great to be alive!

I did not get a second opinion. I was diagnosed by my pcp and was moving to Milwaukee when I was diagnosed. I ended up going to Froedert medical college. I saw a board certified endocrinologist who specializes in thyroid cancer. I trusted what I was told. My cancer had spread to 9 lymph nodes, so a total thyroidectomy was necessary. My advice is to find a someone who specializes in thyroid cancer. My pcp in MN would have treated me has I not moved and I have no doubt I would not have received the proper care. I moved back to MN and my pcp took over my thyroid care and I went through a year of my TSH being on a roller coaster. I gained 7 lbs, lost a lot of hair, it is not fun. See an endocrinologist for sure. Surgeons don’t always have the best communication skills, so keep that in mind. Definitely find someone who is a pro at this.