1. < Thyroid Cancer
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Thyroid Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 20, 2019

Welcome to the Thyroid Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with thyroid cancer or caring for someone with thyroid cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

What type of thyroid cancer were you diagnosed with? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

Dee | @danielad | Jun 23, 2020
In reply to @colleenyoung "Hi @danielad, that is a question outside of my knowledge. I couldn't find much about low..." + (show)
@colleenyoung

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?

Jump to this post

@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

REPLY
Dee | @danielad | Jun 24, 2020
In reply to @colleenyoung "Hi @danielad, that is a question outside of my knowledge. I couldn't find much about low..." + (show)
@colleenyoung

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?

Jump to this post

@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

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 24, 2020
In reply to @danielad "@colleenyoung -- Colleen, I wonder if there may be a "better suited" group for my question?..." + (show)
@danielad

@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

Jump to this post

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

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1 reply
sophia07 | @sophia07 | Jul 1, 2020

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.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 5, 2020
In reply to @sophia07 "For my yearly wbs, I have to go off thyroid meds, and do low iodine diet..." + (show)
@sophia07

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.

Jump to this post

@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?

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1 reply
sophia07 | @sophia07 | Jul 5, 2020
In reply to @colleenyoung "@sophia07, I'm bumping this discussion back up to see if fellow members have experienced low blood..." + (show)
@colleenyoung

@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?

Jump to this post

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.

REPLY
1 reply
Nanci | @nancirae | Jul 5, 2020
In reply to @sophia07 "When I started the Thyrogen injections it was like having the flu, then after the second..." + (show)
@sophia07

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.

Jump to this post

I got the first Thyrogen injection when they first came out. Had a few more as the years went on. Never had a reaction. My Dr told me if I didn’t have the new injection , it would feel like you were a slug. I really feel for you to have to go thru that.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 25, 2021

Welcome new members @daroca @maureenelizabeth @daddarios58 and @christys. Pull up a chair and join the virtual circle. When were you diagnosed with thyroid cancer and what type do you have? How are you doing today?

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maureenelizabeth | @maureenelizabeth | Feb 25, 2021

Thank you! I was diagnosed with papillary thyroid cancer in March 2020. I had severe collar bone pain for a year previous, I was seeing a chiropractor for the collar bone pain and he recommended I have a MRI. The MRI results showed lesions on my left thyroid lobe and left axillary and subclavicular adenopathy. I had a total thyroidectomy and 12 lymph nodes removed. I am on 175mcg levothyroxine. In October 2020 I was diagnosed with Lupus. I have a strong family history of lupus, my mother, grandmother, mothers sisters, and numerous female cousins. I’m being treated with plaquenil and meloxicam. I’ve tolerated all medications well and am feeling better than I have in years. I see my oncologist every 3 months.

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