Thyroid Cancer Group: Introduce yourself and connect with others

Hello. I sought a 2nd opinion because I was no longer feeling well taken care of by my previous provider,where I had originally been diagnosed and treated by them for a year. Within the past 6 months or so, noticed too many times there were communication gaps between them and I lost confidence they were doing everything possible to help me. I'm so very happy and grateful that I'm now being treated at Mayo since early May!

I got a second opinion on my diagnosis. I had a biopsy done in Des Moines, Iowa and was told it was papillary carcinoma. The surgeon I was seeing said she would only consider removing the entire thyroid. I wanted to confirm the diagnosis was correct and also explore other treatment options. I went to Mayo and had biopsies done and they confirmed my original diagnosis was correct, but they were able to only remove half my thyroid. With only removing half, I have not had to take any meds, so far. The half that is left has been compensating for what they removed. I am thankful I got a second opinion. I don’t think it ever hurts to have someone else give you their opinion. Every doctor has had different experiences, so it’s helpful to get a “second set of eyes”, in my opinion.

it really depends on if you trust your doctor. I had an ultrasound of my carotid arteries(not even there for thyroid) and my doctor and radiologist saw something they didn't like, my doc called me in immediately and said she wanted me to see a ear nose and throat specialist, and when they did the biopsy the next day, i didn't look further within 3 days I had surgery and was looking at doing radioactive iodine. I really trusted my doctor and the specialist so did not get second opinion. As it turned out in those 3 days it had grown from 3 cm to almost 6cm, so it was fast growing and if I had taken the time to get the second opinion it would have involved more of my lymph nodes.

I deeply regret not seeking a second opinion. The surgeon I had took out my thyroid and two parathyroids (there was no need for parathyroid removal). Because if that, I am on multiple medications for the rest of my life.

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.

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!

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

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

@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

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?