Worsening symptoms...menopause vs. complications of thyroid cancer
I was first diagnosed with Papillary Thyroid Cancer (T3a) in April 2016. I underwent a complete thyroidectomy & neck dissection followed by 2 courses of I131.
Initially I lost my voice for 6 weeks, but gradually it came back. Almost immediately following surgery I experienced shortness of breath (SOB) and acid reflux. After several visits to (2) ENT doctors and (2) pulmonologists with scopes and lung function tests, it was determined my right vocal cord is paralyzed in closed position making it hard for me to breathe. Okay...I just huff and puff a little more.
Over the past 8 years other symptoms are getting worse including extreme fatigue, night-time migraines, elevated night-time blood pressure, weight gain, achy joints, cholesterol, blood sugars, etc. TSH lab work done every year and providers insist my Synthroid dosage is what it should be. They attribute my worsening symptoms to menopause. When I ask if there is something we can do to correct these problems providers are all reluctant to prescribe anything due to my history of thyroid cancer. All they recommend is I talk with a dietician which I have done twice.
I keep a food diary and they say I eat healthy, but health problems are interfering with my life. They say symptoms are hormone related but they will not prescribe any HRT. I am feeling so frustrated and tired of the run-around. I want to be able to enjoy life, but just don't have the energy. Also am alarmed at my high blood sugars and high cholesterol and SOB. I do not want to have a stroke on top of everything. Anyone have any advice?
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In rereading your reply .. are you insinuating that thyroid cancer is caused by high cholesterol or BP?
Thyroid cancer is caused by high radiation Xrays, as a Radiologist, cancer in your thymus.
I know that 4 years prior I had two xrays taken by a Chiropractor. I had to open my mouth I told my surgeon. Then I asked who checks her xray machine? I got no answer. Then I questioned our Power Board but no. My father died of Lymphoma diagnosed by a post-mortem aged 83.
That is why I want the thynus identified. It's big in a child but shrinks as we get older as only required as a young child to maintain immunity of childhood illnesses.
Every year after sending a reminder to my surgeon I ring Radiography Department if there is an appointment made. I was done in our base hospital. In Feb 2020 4 months after Stroke. The Endocrinologist tried postponing it to 6 months but as I said surgeon and anaesthetist team over rode said a.s.a.p.
There are a lot of risks in RAI yteatment. Were you given these?
Another hot, muggy day with nlue skies in NZ. Cheri JOY
No, I am not insinuating my cancer was caused by either BP or high cholesterol. I had neither until post thyroidectomy.
I work in radiation oncology and radiology for the past 36 years and understand the thyroid is highly susceptible to radiation exposure. I accept my cancer was likely a hazard of the job. It is all the issues I have had since my surgery that frustrates me.
I find it very concerning when a doctor wants to tie issues to areas which cannot be proven (menopause, nutrition), when a change in medication or dose, will cause a reaction which can prove the association of thyroid and/or medication to the symptoms you are having. I had one doctor tell me to wait 6 months to “give the medication a chance” when I was on a high dose of Synthroid…. I asked her if she would wait 6 months dealing with constant leg cramps, headaches, nausea and extreme fatigue to see if a medication worked? My new Endocrinologist discontinued the medication and the symptoms went away within days!! I do not miss the leg cramps!!! Unfortunately, after a little while the symptoms of Hypthyroidism started, so I had to try a new medication, but that showed me that the symptoms are related to the medication and dosage and not just “aging.” The dosage of Levoxyl is about a quarter of the dosage the previous Endocrinologist had me taking of Synthroid (and she was talking about raising it!).
Since you had a total thyroidectomy you cannot just stop your medication, however asking to increase the dose to see if it helps with the side effects while lowering your TSH even more, might work. Maybe you can use the old “Let’s just try it and see approach,” with the doctor.
I am fortunate that I do not need referrals for doctors; I can just go. However if your doctor will not give you a referral, maybe you can tell her you want a second opinion….from what I understand, they have to grant second opinions. You might also try calling your insurance company and ask about seeing a cancer specialist…they might not require a referral since you want to prevent regrowth and that will save the insurance company money. Definitely keep trying!!
Good luck!
Agreed...will ask my provider one more time to adjust Synthroid and if she says no, I will be seeking a second opinion.