I Was Really Tired All The Time - Lizzie | Thyroid Cancer | The Patient Story

[@kristinebalena3969]

I'm glad you're doing well now. I was diagnosed in May 2007 with medastatic papillary thyroid cancer with a follicular variation. I went a year and a half being misdiagnosed as a swollen gland or ear infection. All my tests and FNAs came back normal. I had a large lump behind my right ear. My ultrasounds on my thyroid were normal. The ENT thought I had a cyst in my neck and wasn't going to do anything. I demanded it be taken out. My surgery was at walter reed military medical center. 8 hour surgery with a radical right neck dissection and total thyroidectomy. I had lymph nodes removed as well. My thyroid was covered in microscopic thyroid cancer. I ended up up with high doses of RAI, and everything until 2023 when I was finally declared undetectable. Always advocate for yourself. Doctors work for us! I was fortunate that my 2 surgeons spared my vocal chords as I was a 911 dispatcher and took out my entire thyroid etc. It's a bit difficult to diagnose thyroid cancer because the cells are similar to normal ones.

[@hazeleyes449]

I’m having ear aches off and on. My doc gave me antibiotics and they didn’t work. Should I go see an ENT?

[@kristinebalena3969]

@hazeleyes449 I would. ENTs are specialists in their field of medicine. Second opinions never hurt.

[@hazeleyes449]

@ Ever since my flu shot 10 years ago, I’ve been having issues medically. So if I mention to my husband I’m going to see an ENT, he will probably say something like I’m being a hypochondriac and that there is nothing wrong with me. I had a really bad pain under my rib cage one night and I was doubled over in pain for about an hour wanting to get sick and I mentioned I probably should go to the ER and he said “Remember when you went to the ER a few years ago? You had gas.” This was so different and I’ve never felt that pain before. It did go away and I haven’t had the pain since, but you never know. I tore my bicep a few weeks ago and he was telling me his bicep was torn and he worked through it. I guess I’m not as strong as him. I’m not sure why I put this out on the internet?? Just, I’m kind of alone in dealing with ailments. I’m 52 yrs old and I’m no spring chicken. His family has good genetics. Mine, not so much. Thank you for your reply. It means a lot.

[@janetatum8966]

​@@hazeleyes449 sorry you're not getting the compassion and concern for what concerns & is hurting you...by who should care most & be your advocate. Sometimes I think in best case scenarios of what you're describing w/ support system, loved ones don't even want to consider something being very wrong w/ a loved one...but it can translate as belittling to the person affected. ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) & common comorbid condition POTS/OI (Postural Orthostatic Tachycardia Syndrome/Orthostatic Intolerance...so common w/ ME/CFS that it's in the ME/CFS criteria symptom checklist) can be triggered by the flu jab per my decades long ME/CFS specializing physician-scientist I saw for years. He doesn't recommend his patients get that specific V/jab. But certain viruses (Epstein Barr, Parvo B-19 human virus, others) or infections are strongly implicated as triggering pathogens of ME/CFS and POTS. Trauma also can be a trigger...accident or otherwise like mold toxicity/exposure...as it can alter immune response (more vulnerable to onset at major hormonal shifts in life). Similar things can trigger other frank defined autoimmune conditions. The 2 above mentioned conditions do involve auto-inflammation and some vague autoimmunity also. Not uncommonly autoimmunity runs in families & so does ME/CFS (& Fibromyalgia), not uncommonly. Hypermobility (EDS, hEDS sub-type especially) seems to be WAYY more prevalent in ME/CFS patients and families. Often hEDS symptoms pre-date ME/CFS onset, if one looks back in retrospect. But also some don't realize they have hEDS (our or our family's "normal"...is our perceived "normal"...even if isn't normal) til post ME/CFS onset. A few reasons, when not able to exercise from PEM/PENE (Post-Exertional Malaise/Post Exertional Neuro-immune Exhaustion) of ME/CFS, hypermobility can get more apparent when muscles that support joints (besides tendons etc that should be supporting things but don't do so very good in hEDS, weaker & looser)...get weaker. Also, ME/CFS's chronic inflammation can have a "tenderizing effect" on connective tissue & increase tissue laxity/hypermobility if joints. Hypermobility often decreases with age (early@onset degenerative arthritis can develop w/ hEDS & MCAS which can be behind degenerative/Osteo-arthritis...orrr w/ hypermobility, some stay limber longer, depending individual's body & injuries history) but accompanying comorbidities of hEDS still exist & can bother one more as age sometimes. Mast Cell Activation Syndrome (MCAS) or some form of heightened allergic inflammation, food & chemical; environmental sensitivities is common in hEDS & ME/CFS & POTS (& Endometriosis). Not saying this is what you experienced but w/ ribs (gallbladder would be my other idea...stones, sludge, inflammation, infection, Biliary Dyskinesia...look it up. HIDA scan checks for this & gallbladder contents shows up too on this. If surg not needed totally, look up Tudca...abbreviation for replacement of acid many don't have enough of...to help clear out gallbladder & help function. BodyBio Tudca is high quality & info on their website), but also can check out: "Precordial catch syndrome (PCS), also known as Texidor's twinge, is a benign condition that causes sharp chest pain, usually on the left side of the chest"...from Google. Endometriosis can also grow upwards or nerve pain can refer up to chest from it. Of course clot or PE is a considerable also if chest pain & breathing issue. And heart...symptoms in females are different than men when it comes to cardiovascular events. Your biology/genetics isn't your fault. Medicine isn't always great at chronic conditions, at all...acute ones, pretty good. Bodies give us alerts like dashboard car warning lights. It's good to listen & be intuitive about our bodies. You're your own best health historian. Complex Chronic Illness clinics can be great but often cash pay. Allergists & Rheumatologists can be helpful if find right fit. Dr. Paldeep Atwal: Atwal Clinic virtually (in FL) for EDS testing (like 13 or 14 forms of it). He has info packet he sends out post appt (cash pay appt, info PDF is free post appt). Health Rising blog, ME Action, Open Medicine Institute, Solve ME/CFS Initiative, & doctor list databases on Ehler's Danlos Society and Dysautonomia International websites may be helpful for finding literate chronic illness physicians on ME/CFS, POTS, EDS/hypermobility. Dr. Lawrence Afrin's Mast Cell Activation 101 vid on KZbin may be helpful & his book: Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity. All the best.

[@kathleenlogsdon6069]

​@@hazeleyes449I was reading your comment, you sound so sweet I would definitely listen to what your gut & heart are telling you, only you know what's best for you. God Bless You I hope you find the answers your looking for. Take care ❤️

[@norlavine]

What an absolute darling! Beautiful face and beautiful mind. All the best young lady. xxx

[@ThePatientStory]

she's amazing!

[@scottiehall8695]

I had advanced thyroid cancer at age 38 and I had 5 kids under the age of 10. Total thyroidectomy with RAI later. I'm now 63 with no recurrence. It wasn't a big deal.

[@ThePatientStory]

glad you're doing well today!

[@sarahfellner891]

What kind of thyroid cancer do u have

[@kathrynemason1673]

I was diagnosed in 1998 at the age of 34, total thyroidectomy and neck lymph node removal all OK for 5 years, then recurred meaning a block neck dissection and more lymph nodes removal. 4 years later a few random nodules in my liver that were thyroid cancer cells, all sorted, again, then 2021, triple negative breast cancer at the age of 57! I'm hoping this is it!!!! I'm still here.

[@lesleymaclennan7899]

❤❤

[@hazeleyes449]

Omg girl!!! You got this though!! I’ll be praying for you to knock this cancer out like before! ❤❤🙏🏼🙏🏼

[@ThePatientStory]

wishing you the very best with your treatment plan!

[@claireashley427]

Wow that's a lot to go through! You are definitely still here for a reason though! Treatments are getting better all the time. I pray you beat this just like you did the others and you live a long healthy happy life!❤

[@chiaradigiorgio1821]

Wishing you all the best and cancer free Lizzie 🙏🙏❤️😘

[@tohonour]

You are very beautiful. May your faith carry you! Blessings...

[@ThePatientStory]

♥♥♥

[@mmcrommett]

Thanks for doing Thyroid cancer patient. I have metastatic poorly differentiated RAI resistant thyroid cancer. I’ve had 5 total surgeries one of which was in my lung. I had RAI once and external beam radiation. The cancer in my lungs continues to grow slowly and will soon start a TKI. I did recently try rediff at Mayo but I had zero uptake so we keep moving forward. Thankful for the Facebook support group.

[@dorothywalters7448]

It was 2015, knew I had several nodules but was watching the size. Aspiration in 2016, suspicious results and I asked if I could have the right lobe removed. 1st surgery August, medullary cancer diagnosis!! Dr. called for 2nd surgery and lymph node removal. No treatment needed and thank God cancer free to date.

[@ThePatientStory]

so happy to hear you're cancer free!

[@hidden-r2s]

I also had papillary thyroid cancer at 26, which was 25 years ago now. As someone else said it wasnt that big a deal after all~but I remember being so scared at the time.

[@ThePatientStory]

you truly can't imagine how scary it can be until you're the one living it :(

[@roxannsejkora1691]

I found out that I had thyroid cancer because of an X-ray of my neck that I was having problems with. They saw a mass on my thyroid, so I was sent to an ear nose and throat doctor. They did a biopsy and it was cancer. They took one half of my thyroid and it had 3 tumors. Two weeks later, I had them take the other half to be “preventative “. They found 5 tumors, the largest one being 8 millimeters in diameter. Now i have been cancer free for about 15 years. I am very thankful for the doctor that did the surgery. He did a great job and I got excellent care. Now I take medication and have yearly blood work done.

[@ThePatientStory]

wow so great you found a great doctor!

[@dawnbaker7861]

Glad your well. My neighbor is fighting anaplastic thyroid cancer. Sending blessings

[@ThePatientStory]

hope your neighbor has a successful treatment plan!

[@Adam-y4i]

Wow so beautiful! Im glad your ok!

[@ThePatientStory]

♥♥♥

[@truthsocial7338]

Sounds your med team were great. What medical insurance do you have?

[@carmencorleto1479]

That's insane none of the prior doctors ordered a biopsy

[@rozchristopherson648]

I wonder. Taking levothyroxine, a thyroid medication, is associated with an increased risk of developing cancer. Sometimes these medications also increase cancer risks. I don’t know if this beautiful young woman was taking this medication. But for anyone who is taking this medication or any other medication, be aware of the risks of taking these drugs, especially year after year long-term.

[@karinsalentijn9607]

I have Thyrax for my thyroid, for 7 years.. The meds has nothing too do with cancer,on Any other place in your body..Only thing Thyroid meds works on your heart.. In every cel of your body .. Dont worry. I feel ok.

[@CarolSides]

I’ve been taking thyroid meds for 54 years. My situation might be different since I developed Hashimoto’s disease which destroys the thyroid

[@karinsalentijn9607]

@CarolSides i have Hashimoto's 2. I use 1 Thyrax from 0,100 mg and 1 from 0,025 mg.

[@lynnbradley7387]

What kind of thyroid cancer did you have?

[@sarahfellner891]

What kind of cancer do you have