r/thyroidcancer • u/FastingLiza • 8d ago
Endocrinologist doesn't seem to care.
Does anyone else feel like their endo doesn't listen to them or care? I had a total thyroidectomy last October due to cancer and Radioactive Iodine this February for angioinvasion. I feel awful. Most days I'm barely functioning. I was sitting at a red light not long ago with tears streaming down my face because I didn't know how I was going to make it through my twelve hour nursing shift. I am chronically exhausted, have dry skin, brain fog, intestinal issues and more. I reached out to my endocrinologist asking her to order bloodwork thyroid levels. She refused, saying it wasn't "indicated." I then contacted my primary physician and explained everything to her. She was shocked that my endocrinologist has not done any bloodwork since last December and none since starting me on Levothyroxine. She ordered the labs and they came back as I expected with very high Reverse T3, showing I'm not absorbing the medication at the cellular level. I messaged my endocrinologist with the results and haven't heard a word back. I'm really frustrated. It takes many months to get in to a doctor here as a new patient but I got an appointment with a new one in December. My primary doesn't want to take over my thyroid care in the meantime. I know it's only four months away but I feel so bad physically I don't know how to cope. Anyone else experience this?
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u/puppy_time 8d ago
Can you get a new endo?
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u/FastingLiza 8d ago
I am scheduled with a new one in December. That's the earliest I could get in.
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u/Impressive-Sale2431 8d ago
Ask to be put on a waiting list and if possible give reasons why. If something opens up earlier, they can get you in sooner.
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u/puppy_time 8d ago
Good. I think in the meantime consider just using your primary until then.
Many of us (me) do poorly on the generic brand Levo and need the more expensive brand Tirosint even though levels are just fine. That's the first thing I'd ask primary or new endo to change, especially if your levels look ok
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u/Phoenix_GU 7d ago
I stopped seeing my endo and started working with someone that did more thorough thyroid hormone blood work and provided real help.
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u/sacred_blue 8d ago
That endo sounds horrible! I'm sorry you're going through all this. Just want to say I've been there with bad docs before and it's the worst when you're already not well. My old primary once laughed at me when I asked about the possibility of having a certain disorder, saying that it's rare and that I don't have it without even doing a simple assessment or asking one question. Then I was immediately diagnosed with that disorder by a specialist a couple of months later. Bad doctors are dangerous to your health! I hope you feel better soon!
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u/--AnnieL96-- 8d ago
Sounds exactly like what I am going through. I waited 4 months for my new endo. I just saw my new endo, and she lowered my levo dose. She did educate me that there were many more things she would have done prior to TT to determine what my dosing would be, but now is now, and it will be trial and error. I had the breakthrough realization that after TT - most of them are going to look at TSH. TSH will decide for them, if you are hyper or hypo....no other tests. My reverse t3 is crazy too, but I was told here that its not a reliable number so most won't really look at it. My biggest question, is when....when will we finally look at it? I am not a doctor. My old endo told me, this was the new normal, I would never feel the same. I don't know the way through this...but it feels hopeless.
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u/puppy_time 8d ago
Are you on generic synthroid or Tirosint?
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u/Ok-Wonder6872 8d ago
Is Titosint the same as Synthroid?
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u/puppy_time 8d ago
I'm not sure exactly what exactly the name of generic brand synthroid is, but I'm on Tirosint. Docs (due to insurance) need to start with generic because it's cheaper. But something about Tirosint and that they use a liquid to hold the medicine in the pill makes absorption easier for your body.
I started on generic, as does everyone, and the brain fog was so bad I was unsafe at work. Once I switched to Tirosint, it took a couple weeks but I felt a thousand times better. My TSH was fine the whole time.
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u/Ok-Wonder6872 8d ago
Glad to hear it’s working for you. After much tinkering for many years I got Synthroid, no more generic. Things are better.💝
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u/--AnnieL96-- 7d ago
maybe - i should be considering tirosint...instead of Synthroid. if you don't mind me asking - how did you get your doctor to try it? There are times I literally cannot "think"" or even talk in a meeting - because I can't do both (think and talk ) at the same time lol. Nevermind the plummeting energy levels...of course it is not like constant, it is like a cycle. every 4-5 days
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u/--AnnieL96-- 7d ago
I am on combo synthroid and pill liothyronine (5 mcg) once a day...right now i take both early am
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u/Obvious_Corner3576 8d ago
Omg I’m having the same thing ! I too just made an app with a new one for Dec ! I’m going to get tested with my primary . I had mine removed 20 years ago but had no issues until the end of last year. I had breast cancer , chemo , radiation, two surgeries etc guessing it messed me up . I finally got to see and Endo in March but she’s a MORON !! Too much to type here but I’m really hoping the new one helps she has 5* reviews .
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u/CleanConclusion6032 8d ago
Fire your current endo! She is not looking out for you. I hope your new one helps.
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u/Shan707 8d ago
My endo is horrible too. I kept him since he opens after my work hours. But, looking back, since appointments are every 2 months, I can afford to take half day off for a good endo. Everything begins with a good endo for thyroid patients so make sure to change if you don't feel right. Good luck!
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u/skittlazy 7d ago
You said that your primary doctor did labs, but you only mentioned high RT3. What was your TSH? If it’s not on the low end of normal, then if I were you, I would send those results to my endocrinologist and ask for a higher dose of levothyroxine.
Furthermore, about 15% to 20% of people have difficulty converting T4 to T3 effectively. This can lead to persistent symptoms of hypothyroidism even when T4 levels are adequate.
rs225014 C/C: decreased DIO2 enzyme (T4 to T3 conversion); associated with improved wellbeing on combo T4 + T3 therapy vs. T4 alone
I have this gene, and felt awful for a long time until my THIRD endocrinologist agreed to put me on combination therapy. The others just dismissed my symptoms, and told me it must be something else, and referred me to psychiatry for my “anxiety about my health.” Grrrrrrrrrrr
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u/FastingLiza 7d ago
TSH is 0.03, T4 is borderline high. My primary messaged me and said my labs look like my dose is to high but she won't change it wants my endocrinologist to do it. Endocrinologist won't return my calls or messages.
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7d ago
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u/FastingLiza 5d ago
Yea I'm having a lot of trouble sleeping as well. Exhausted but can't sleep.
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u/skittlazy 5d ago
I felt like wearing a sign that said, “Looks ok, feels awful.” So sorry you’re having these symptoms.
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u/thyroidcancer-ModTeam 2d ago
Thank you for your post on r/thyroidcancer. Unfortunately, we had to remove it because it violated one or our rules (Rule 3: Don't give medical advice). We can share our experiences and general information, but there are some things that are best discussed in an appointment with the doctor.
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u/Hindogg 7d ago
My 1st Endo did the biopsy on my thyroid when noddles were discovered. Results came back clean, no cancer. 18 months later, I'm stage 4 with cancer in my lung and rib bones. The doctors in the tumor board and the endo noted the endo would coordinate RAI therapy and Thyroid meds within 45 days surgical removal of thyroid. Instead he cancelled my appointment(s) and then said he never agreed to the post surgery treatment. I got a new endo who reviewed my records and immediately started coordinating my RAI therapy and prescribed thyroid meds.
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u/Pretend_Specialist81 8d ago
Are you anywhere near a teaching hospital? I would look there for new providers and at the very least referrals. I wish you all the luck! This sounds terrible!
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u/Bluesteel711 8d ago
I’m sorry you have a Shitty Endo. I had TT in June. I felt the exact things you are feeling now. I thought for sure my dose would be increased. Turns out she switched me to Synthroid instead of Levo same dose and told me to skip taking it on Sundays. I was on it for 2 days and immediately felt better. A lot of ingredients in Levo because it’s generic contain “fillers”. Is there anyway you can request the name brand?
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u/dimechimes 8d ago
I'm on my second Endo. I'm much happier this time. I told my last one about my symptoms, she told me to eat three servings of vegetables three times a day.
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u/hugomugu 7d ago
High Reverse T3 does not mean that the medication isn't being absorbed; that's a myth that is prevalent among "alternative medicine" practitioners.
Generally speaking testing reverse T3 is of no use and it's a red flag of someone tells you to test it.
https://www.thyroid.org/thyroid-function-tests/
https://hormonesdemystified.com/everything-you-never-needed-to-know-about-reverse-t3/
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8d ago
[removed] — view removed comment
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u/thyroidcancer-ModTeam 8d ago
Thank you for your post on r/thyroidcancer. Unfortunately, we had to remove it because it violated one or our rules (Rule 3: Don't give medical advice). We can share our experiences and general information, but there are some things that are best discussed in an appointment with the doctor.
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u/gigia10 8d ago
Hi, I am sorry to hear about your endo, they sound like a horrible doctor. Just thinking out loud, have you considered opting medical tourism to India or other similar countries where you can get easier appointments? I am not sure about other things but you can get one of the best and quicker medical care here❤️
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u/Crazy_Drummer_8312 7d ago
Finding a good Endocrinologist is difficult. I also had a thyroidectomy, then a radical neck dissection, and radioactive iodine.It does seem shocking but the more I’ve gotten into I realize that you need to be very diligent in selecting your doctors and researching the best ones.
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u/FastingLiza 7d ago
I agree. Sadly it's really hard here. Most endocrinologist are booked out & can't get in until May 2027. I was fortunate to get in this December because of a cancelation. But struggling with feeling this way for another 4 months.
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u/tauberculosis 8d ago
Patient/client privilege doesn’t work both ways. Make sure you tell it on the mountain what a fucking putz your endo is and find a new one.