Thyroid Cancer

Join the Conversation on
Thyroid Cancer
3.5K people
0 stories
249 posts
About Thyroid Cancer
Explore Our Newsletters
What's New in Thyroid Cancer

Another Diagnosis

I have lived a number of years with multiple chronic/incurable conditions. This week I finished my assessment with my new therapist and in-addition to validating all the existing mental health diagnoses I knew already, she gave me a tentative new one of Borderline Personality Disorder.

Now, other than having seen "Girl Interrupted" I didn't know much about what BPD actually is. The more I've learned though, the more moments from my past have started to make sense. A lot of "ah-ha" moments for me this week.

#BorderlinePersonalityDisorder  #Anxiety #Depression  #PTSD  #MentalHealth  #Fibromyalgia  #ChronicFatigueSyndrome  #MyalgicEncephalomyelitis  #ChronicFatigue  #ChronicPain #BreastCancer  #ThyroidCancer #PanicAttacks  #PanicAttack #ChronicIllness

10 reactions 2 comments


Well, I finally got a diagnosis. I thought I had multiple sclerosis, with all my symptoms. Turns out I have thyroid cancer with secondary hyperparathyroidism. Not what I was expecting at all. It’s a relief to finally know and I do love that there’s a plan moving forward. I’ll likely be okay, after they remove my thyroid. It’s just weird when your diagnosis is not what you were expecting AT ALL. #Cancer #thyroid #Hyperparathyroidism #MultipleSclerosis

2 reactions 1 comment

Double Trouble

I begin another week-long tour at the Mayo Clinic today - my third trip so far. I'm having surgery for a rare thyroid cancer and I'm also having more tests and seeing the neurologist for my rare neurological disorder. My neuro treatment isn't going well, and I may need an uptick in intensity. Dealing with two disorders, both in the acute phase, at the same time is really draining me. I also tend to shut down my feelings when I have so many action steps to take, so they all flood me when I leave Mayo and things slow down. The next 2-3 weeks are going to be quite difficult.


Genetic testing for the parents of a fanconi anemia child # fanconi anemia

Hi! I have 5 children and I’m 42. In 2006 my daughter had her stem cell (unrelated ) bone marrow transplant. She did very well long story short she is now 22 and has had skin cancer and was treated with removing the cancer. Now she was just diagnosed with thyroid cancer. Also something is going on with her liver, continuos elevated liver enzymes. We’re waiting on results from a ct at this time. February 12 she sees the doctor for a surgical consult and then will receive radiation
I’m worried since there still isn’t much research on how they are doing as adults
Also my youngest son has another inherent disease called hyperlipidemia. He sees a cardiologist annually to see when he will need medication for this. My daughter was diagnosed by geneticists. I requested a referral today to see a geneticist to see what I’m predisposed to. (I took my data from ancestry and uploaded it to genapp. And it’s loaded with all the genetics stuff. I have 9 dominant disease that I carry (not sure which will be the one that affects me)
I plan to show the geneticists. My whole family has all sorts of disorders mental and physical and quite a bit are hard to diagnosi. Especially with the auto immune area

Has anyone done this? Does anyone have an adult child after their transplant ? I would love to know how they are doing…any advice or tips?
Thank you

1 reaction

Highly recommend the Netflix documentary Take Care of Maya about a young woman w/ CRPS and the aftermath of her medical "care":

Chronic Regional Pain Syndrome aka CRPS is yet another poorly understood, pernicious illness that disproportionately impacts women and girls. In this case, it led to an utter fucking nightmare for both the patient, Maya, and her family. The film expertly depicts the hell that results when physicians don't believe the patient and wrongfully dismiss debilitating physical symptoms.

It might hit too close to home, so proceed accordingly.

I've been too ill to write here for the past two weeks--the symptoms from the M.E., cancer, and heart attack are currently wreaking utter havoc w/in my body. So maybe it was an odd choice to watch Take Care of Maya tonight. On the other hand, I believe information is power and that it's valuable to keep learning how and why a medical system that's ethically and legally obligated to help instead too often harms so many of us:

Day 45 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ThyroidCancer #Cancer #CRPS #chronicregionalpainsyndrome #ChronicIllness #HeartAttack

Take Care of Maya | Official Trailer | Netflix

When 10-year-old Maya Kowalski was admitted to Johns Hopkins All Children’s Hospital in 2016, nothing could have prepared her or her family for what they wer...
5 reactions 2 comments
See full photo

What’s your oldest diagnosis?

The majority of our Mighty community has been diagnosed with 3+ health conditions, and many of us have lived with those conditions for over five years. We’re curious what your oldest diagnosis was? If you’re comfortable sharing, how old were you at the time?

Here is a diagnosis roundup from Mighty staff: bilateral vestibular loss, spina bifida, OCD, ADHD, and thyroid cancer.

✏️ P.S. Answer with the first formal label you received vs. when you started experiencing symptoms (that’s a whole other post for another day!).

#MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Autism #ADHD #Cancer

52 reactions 37 comments

A close friend just asked if she could pick up groceries for me while she's out running errands and it has restored my will to live:

One of my closest friends just checked in because she knew there were still more tripwires with UW Medicine today--phone calls and MyChart messages that seemed specifically designed to go in circles--and because she has lived her own version of this story, she knows firsthand it's grueling.

So, she said to text her my grocery list tomorrow and that she'll pick up everything when she's running errands.

This is basically Nobel-level friendship--seriously, why no prizes for stuff like this?--and I love her so freaking much.

My physicians seems to have no clue whatsoever that living with Myalgic Encephalomyelitis, thyroid cancer, ongoing radiation complications, severe Orthostatic Intolerance, and the aftermath of a small heart attack can be dicey most days. They're obtuse in a way that'd be awe-inspiring if it weren't so dangerous.

But I still have many loved ones who do, in fact, get it--my mom checked in today, too--and I'm deeply, unendingly grateful.

Day 20 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #pwme #cfsisamisnomer #ChronicIllness #ThyroidCancer #Cancer #Disability #Love

10 reactions 4 comments

More material errors today: I swear to god I could visit my nephew's 7th grade Biology class and encounter more astute scientific minds:

Mark Twain once wrote, "Give a man a reputation as an early riser and he can sleep 'til noon."

For a long time, UW Medicine was known as a top-tier medical facility.

But in recent years--and this started before the pandemic--they've been on a downward slide. One of their residents even confided in me last year that UW's lack of communication among clinicians was alarming to her.

Today was a loooooooooonggggg day, so I'll leave you with this:

UW Medicine is, at this point, definitely a late sleeper.

I'm curious to learn how much longer they can coast on their reputation as an early riser.

Day 19 of 365

#MyalgicEncephalomyelitis #ThyroidCancer #Cancer #ChronicFatigueSyndrome #cfsisamisnomer #pwme #Disability #ChronicIllness

3 reactions

Happy 2024, all! Hope you're feeling as well as possible! Here's an interview I just did w/ the M.E. podcast Post-Exertional Mayonnaise (get it?)

Daniel Moore is a British musician who had Myalgic Encephalomyelitis as a child, seeming got better, and then experienced a return of the illness in 2018.

In 2023, he co-founded the M.E. podcast Post-Exertional Mayonnaise to discuss M.E., music, writing, grief, and whatever other topics might pop up.

He's a good, smart person and I appreciated his questions.

On my living w/ M.E. for 32+ years, thyroid cancer for seven, the small heart attack, my first book Altitude Sickness about my best friend's death from mountain climbing, and my upcoming book Fire in the Hole: A Eulogy for the Living on the massive catastrophe of M.E.

On YouTube:

And on Spotify (it's available wherever you get your podcasts):

It's hard to be human and it's vastly harder to be a sick and/or disabled human, so I hope your new year is off to the best possible start and that the world is treating you w/ the kindness you deserve. All the best. xo

Day 18 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #pwme #ChronicIllness #ThyroidCancer #Cancer #HeartAttack #Writing #Music #Disability

Litsa Dremousis: Author, Essayist and Activist on writing and life with ME

Listen to this episode from Post-Exertional Mayonnaise on Spotify. Daniel is joined by Litsa and her dog Jordan (who she describes as an inveterate cuddler and the primary reason she's alive). Litsa shares from her 30 year history of life with ME and we explore how she's navigated a writing career: interviewing famous music artists, publishing her own deeply personal stories, and raising awareness of the reality of ME at the highest levels. Millions missing episode: Susan Sontag (illness as metaphor) info: Illness as Metaphor Get in touch:
2 reactions