Thyroid Cancer Group: Introduce yourself and connect with others

When I started the Thyrogen injections it was like having the flu, then after the second one I actually passed out, and they couldn't get a blood pressure and they would not let me get the 3rd or the radiation iodine treatment I was scheduled for. Said if my numbers change they will figure out how to get me the treatment. So this year when the wbs time came, they took me off the meds, blood pressure dropped very low, heart palpitations, very lethargic so spent a lot of time laying around and sleeping, very fatigued and had a hard time concentrating or keeping track of my thoughts. To bring up my blood pressure they did give me some medication and it came up to 70/60.

@sophia07, I'm bumping this discussion back up to see if fellow members have experienced low blood pressure either as a reaction to Thyrogen injections or while off thyroid meds. That must be disconcerting to have to deal with for 4-8 weeks. What symptoms do you experience?

For my yearly wbs, I have to go off thyroid meds, and do low iodine diet for 4-8 weeks, my body has reacted to the Thyrogen injections so we go "old school". Does any one else experience severely low blood pressure with Thyrogen injections or going off thyroid medication? My blood pressure drops to 60/40 at best when I go off medication or when they gave me the injections, this year they put me on medication to bring up the pressures and that was better (70/60), wondering if others have a similar reaction? My doctor said she isn't sure why my body reacts that way but would like to hear others stories. Thanks for sharing your knowledge.

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