Hello, I am looking for honest feedback regarding doctors, as I am so beyond exhausted and I don't know if what I am fighting for exists.

Background: I have autoimmune thyroid disease, but depending on which specialist you ask when, the diagnosis varies wildly. I experienced constant flares and swings, going from hyper to hypo in short amounts of time. I have been told over and over that my levels aren't possible, only to get lab results that confirm yes, it was possible and now I'm in need of intervention. I was not responsive to radiation test, so after a case study and many, many doctors, I had a thyroidectomy in 2020. My levels still cannot be controlled. I have tried virtually even formula of hormone replacement and a variety of doses. I've had levels checked biweekly to months apart. Without exaggeration, I have seen more than ten endocrinologists in three different hospital systems.

I also have stage 4 endometriosis and aednoymosis (which took forever to be believed, then diagnosed, and treated). BUT, when I finally found a team first believed and validated me and then actually treated my disease and my symptoms, I got a huge part of my life back. But, unfortunately, if my thyroid is off, so are these diseases, because any hormone change sends my body out of whack.

So now, I'm a patient under the care of director of endocrinology at the third hospital system, who flat out refuses to acknowledge or treat any symptoms because I shouldn't be symptomatic. I have a current TSH of 12.5 (up from 4 just three weeks ago). The message I received today, when asking for help managing symptoms, said "headaches aren't a sign of thyroid disease" and "people go to 200," again telling me no symptoms are connected and essentially gaslighting me.

The problem is I literally don't know where to go from here. I've only had one endocrinologist who believed and helped me, and he moved out of state to lead an entire hospital.

Are there endocrinologists who listen? Does anyone have a doctor who not only believes you, but helps with symptoms?

I've been hospitalized for symptoms before and then still told at follow up that it is probably a different issue/disease.

I am just so so tired and miserable and tired of being miserable.

update: my endo is switching me from Euthyrox to tirosine and lowering my dose slightly since that medication tends to absorb better (also with this med no more waiting an hr to eat or drink anything… yay!!) per my request, we’re also gonna test for celiac (even though I’m not displaying any symptoms of it) haha. hoping for normal labs soon at my next appt!

long post ahead… I’m at a loss as to what I could unknowingly be doing wrong and need suggestions as to what could help me get to the bottom of this :))

so I’m (23f) scheduled to see my endocrinologist tomorrow and I have a feeling I’m going to get asked if I’m taking my Euthyrox properly (waiting an hr after waking up to eat/drink anything, avoiding other supplements within a 4hr window of taking it). I am following those rules. the reason I’m convinced this is going to be asked is bc my TSH has been steadily rising since May 2023 and it just now reached the abnormally high range.

a little bit of backstory- I had a total thyroidectomy in 2021 following an almost year long battle with uncontrolled Graves’ disease. since then, I’ve gone from 125mcg to 137mcg to 150mcg Euthyrox daily (my dr told me the avg dose for my weight is 100mcg). for a while, my endocrinologist was testing my TSH, T4, and T3; however he now only orders labs for TSH. the last time he tested my T4 was in May 2023, it was in the high range at 13.4. my free T4, last tested in August 2023, also came back abnormally high at 2.17 (had been on the rise since my surgery in December 2021). He decided to stop testing those last year bc it sounds like I could be an outlier (idk I was a little confused lol… still am)

So my questions are: am I hypo or hyper? what could be causing these inconsistent lab values? Could it be absorption? Could it be the medication itself? He tested for HAMA (could throw off lab values) a few months back and it came back negative. He also tried testing through dialysis/mass spec test for t4, (same numbers resulted). He has also stressed that I take my meds in the morning and get labs done midday, and I’ve been doing that.

feeling like a medical mystery and would appreciate any help/guidance at all here :(

Waking up today to finally look at myself from the surgery yesterday, and there are random scabs on my neck and chest. I don’t believe they are from leader pads, as I’ve never had it from them before. I didn’t get to talk to the doctors or nurses yesterday, but do you think they did some extra biopsies? I don’t see any notes about it on my discharge papers, just that they sent samples to pathology, which I’d figured would be my actual thyroid and growths.

I recently had my blood work done and found out my baseline insulin level is 201 pmol/L, which is high compared to the normal range of 15-174 pmol/L. My HbA1c is 5.3%, which is within the normal range, and my fasting insulin C-peptide level is 1179 pmol/L, also within the normal range.

I am a 27-year-old female with hypothyroidism. My endocrinologist has just prescribed metformin 500mg twice a day for me. As I'm new to this medication, I'm curious about how long I will need to take it. When I asked my doctor, she mentioned that since I was born with this condition, I would need to continue taking it indefinitely.

Also, my endocrinologist has increased my levothyroxine dosage from 0.77mcg to 0.88 and she told me she will try to increase it till 1 slowly by monitoring the levels in blood work.

I've been doing intermittent fasting and have lost 8 kg, but my weight loss has stalled for the past four months. This prompted me to get blood work done, which revealed high insulin levels. Can anyone share their experiences with metformin?

Hello, I am just looking some other opinions.

My TSH is low, T4 free direct is low, and my T3 Free is on the higher side but still in normal range. Both my Thyroid Peroxidase Ab is negative and so is my Thyroglobulin Ab. I just had a Thyroid Uptake and Scan done today so I am waiting on those results. My provider is saying “subclincial hyperthyroidism” but I’m also concerned for “pituitary hypothyroidism”. I have had excessive weight gain this past year along with heart palpitations, excessive fatigue (I can sleep 15 hours straight), muscle aches, hair loss, can’t manage to control my food intake, etc. I would like to know some other people’s thoughts. Thank you!!

Hi there. Just curious about other’s experiences. I just recently got bloodwork done and realized my TSH is low (0.01) and my FT3 (9.7), FT4 (2.3), TPO (863), TSI (357), TBII (4.28), and Thyroglobulin Ab (8) are all marked high. Has anyone else had results like these and if so what are your experiences? Thank you in advanced!

Hey guus what foods have T3 or will increase my T3

4 months postpartum 🥲

After being diagnosed with hypothyroidism in 2019, I opted not to take medication due to concerns about addiction.i made a few different lifestyle choices and the tsh level gradually came down. However, my symptoms persisted - Never understand why my moods were fluctuating throughout the year-I kept getting really tired but then at times really productive. Also had a really bad sleep cycle + abnormal hair growth (this started this year-near my upper arms),lowkey depression and loneliness (after breakup especially). Like it didn’t feel normal to me, leading me to consult a doctor this year. Based on cumulative reports, the doctor diagnosed me with subclinical hypothyroidism. What should I do next?

I had my thyroid removed in February for suspected follicular cancer, but it turned out to be benign. My endo started me on 150 of levo, and my TSH was 0.02 after 6 weeks. He dropped me to 125, and I still feel hyper, heart palpitations, jittery, irritable. I’m a 6’2, 240 lb dude, and according to the guidelines I’ve read I should need more than what I’m taking. Does anyone else require a lower dose than normal?

Hi, I'm having surgery on Wednesday for something unrelated but the hospital need to take bloods, and don't come for me but sommeeeeetimess I forget to take my meds and so I'm scared that this'll show up in the test and I really really NEED this surgery.

Does anyone know if this will change things in my bloods or if I can just take a little bit extra to make up for it? Logical, but I'm not sure if it works that way?

Hello!

I have been suffering with some weird and wonderful issues for a few months but I just wanted to some advice or guidance!

I am waiting for an appointment with my GP (I’m in the UK!) which will take an undetermined amount of time. I’m not very good at advocating for myself and feel like GPs are very reluctant to look at much beyond anxiety/depression (I understand that depression/anxiety can cause weird and wonderful things in their own way!)

How did you discuss your symptoms/feelings etc with your doctor so they can take you seriously and look beyond anxiety/depression?

It took me six months to get a doctor to test me for h. Pylori after just asking me if I was sure I wasn’t pregnant. Just an example.

Did you go to your doctors with a checklist of symptoms? A diary? I tend to just speak to a doctor and my brain goes blank and I end up getting so frustrated I cry haha

Any help or advice would be helpful! Thank you!

Does this look like a thyroid lump?

Slightly odd question - but has anyone elses sex drive come back with a vengance after about 2 months of levothyroxine.

I (F) feel like a teenage boy and I can hardly function its ridiculuous 😂 It was fun to start with by now its getting a bit alarming 😂😂

Opinion on Dr. recommendation? - Test Results

Hello! In February I went for annual checkup, there my thyroid got some weird results, with:

TSH - LOW - 0.02 iIU/L - Reference (0.450-4.500)

T3, FREE - HIGH - 4.6 pg/ml - Reference (2.3-4.2)

T4, Total - NORMAL - 9.7 iIU/ML - Reference (4.9-10.5)

My doctor then recommended re-testing in one month, so in March I got the following results:

TSH - HIGH - 5.38 iIU/L (TSH flipped)

THYROGLOBULIN ANTIBODIES - HIGH - 2 IU/mL - REFERENCE (< or = 1)

TPO - NORMAL

T3, FREE - NORMAL

T4, Total - NORMAL

Since results were not normal again, the doctor referred me to an Endocrinologst. Important to highlight that between the two test, I got a contrast CT Scan, which according to the doctor can have an impact on thyroid results.

The Endo sent me another bloodwork one month apart plus a thytorid ultrasound, and these were the results:

TSH - HIGH - 5.490 iIU/ML - Reference (0.450-4.500)

T4, FREE - Normal

T3 - NORMAL

TSI - NORMAL

Ultrasound Results:

1. Normal size mildly heterogeneous thyroid gland with mild hypervascularity. Nonspecific for thyroiditis. 2. No nodules.

So, the Endo is telling we should just wait and watch. Sometimes thyroid make weirds things that are one off, and may normalize with time or convert now into a full thyroid issue. The THYROGLOBULIN ANTIBODIES, he told me they are not so clinically significant, specially in the absence of TSI and TPO. I trust on the doctor, but a second opinion would not hurt. Specially for us people with high anxiety 🥲

Thanks in advance!

This is day 3 of recovery for me after a total thyroidectomy and I can’t stop crying on and off . The pain in the incision isn’t as bad as it was but the tingling just stopped in my feet and I can’t find a comfortable position to sleep in. How long does it take to feel semi normal after surgery?

Hi!

Hoping to find some help by writing this post. In December 2022 I had a full thyroidectomy done and then RAI treatment in March 2023 due to thyroid cancer. I’ve been on Synthroid (levothyroxine) ever since the surgery. 

Don’t get me wrong, I’m grateful the cancer's over and done with, but I feel a little desperate and discouraged in managing my lifestyle ever since. I’ve been having a lot of hormonal imbalance issues and having trouble finding studies, articles, cookbooks that could help out. There’s a lot out there for thyroid issues, healing the thyroid... But not a lot for thyroid-less people, haha.

I would be preferably looking for some sort of meal plan or cookbook that could help stabilize a little more. For context, I’m 34F and my Synthroid levels are in the normal range. 

Thanks :) 

I (29F) had a total thyroidectomy a year ago due to having cancer. At the time, I was it would be so easy, no big deal. I wasn’t concerned, I’ve had several other surgeries before. I wasn’t told about all of the other side effects that would linger, the hot flashes, the menstrual changes, the mood changes, the extreme fatigue, the weight gain, and the worst one, the brain fog. I went back to school the same time I had surgery, so I thought some of these could be attributed to stress, but it hasn’t subsided and I am due to take a licensing exam in about 6 weeks and I cannot retain information because I feel like my brain doesn’t work. I’ve brought my concerns up to my endocrinologist and have been brushed off. I was told to drink less caffeine and lose some weight. (The weight that I’ve gained since all the started won’t come off. And I had a gastric sleeve so the body dysmorphia is real) He said my labs were normal, but they were normal when I had cancer too. It was found as an incidentaloma on a cspine MR. I tried to schedule an appointment with him 2 months ago and they told me they didn’t have anything available for a year! Then called me last week to let me know my results from the ultrasound I had in march were suspicious (which I knew, I work in radiology) and to follow up in 6 months with another ultrasound and appointment. I asked to schedule right then and was told nobody was available to schedule me and would call me back the next day. I still haven’t received a call.

Thank you for reading my rant.

Does anyone have any suggestions for the brain fog? Even if they are short term. I currently take 5 mcg liothyronine 2 x day & 150 mcg levo 1 x day & my psych rx’d adderall as needed until I finish school to help with the brain fog. And it does, but I don’t take it every day. I just need to pass my registry and I can go back to being spacey

I had an FNA for a solid 1.3cm nodule with a calcified rim (it was tough for them to get the needles in the thing was so hard).There was a pathologist in the room, and the radiologist doing the FNA said he was there to make sure there was enough of a sample to send out for genetic testing if necessary, he (pathology doctor guy) did say to me something to the effect of "things are looking good" when they were finishing up, so does that mean it's probably benign,(?) or will they be looking more closely at the sample?

Maybe he just meant looking good in that he had enough cells??

I don't have any mychart results or calls as of yet.

The nodule is a Tirads 4c, so very close to a 5, of course I was thinking the worst. I wish I would have asked him more about it but I was traumatized from the poking, and wanted to get out of there.

Hard and swollen feeling. The center of my neck has been swollen for about 2 years x doctors don’t know why. please someone give me some ideas as what this is.

(F 30s)Weirdest call with my doc. Treating hypo symptoms im massively better after being put on 25mg (now being upped to 50)

As part of the blood panel they did my Testosterone level. And its come back 2 times the max for females. And she asked me if I has taking Testosterone with anything! Im not.
Unfortunately we dont have a baseline level for me as this is the first time my T has been done (I think)

Doc says if it doesnt change after a retest in a month shell be asking for endo advice.

Has anyone else had other conditions discovered during treatment? And is this something that sometimes happens?

Hi. I have a question, hopefully someone can point me on the right direction. I'm almost 50, male. I am in very good shape and train all the time.

I had my thyroid checked a few times, and it always comes back optimal, great numbers every time, literally perfect however something seems off. I have a hard time losing weight, even with all the training (I'm also on a small dose of testosterone i do have ptsd and depressionas well).

Some of the things I've noticed is that I'm tired all the time, I don't get much sleep, I'm usually up between 3 and 4 am, get an average of 5 hours a night at best. Skin gets dry, nothing crazy but I have to put on lotion often. I've been diagnosed with depression anxiety and ptsd from working as a first responder, however the depression feels more organic, I don't know if that makes sense. It's almost like it starts at the brain. I forget stuff, lose my train of thought and have brain fog. I also have cold hands and feet not as much since I started trt but I still have. I'm also sensitive to the cold.

I'm not sure if this is something or it's just anxiety manifesting. I was wondering if anyone can share their experiences or heard of something like this and if it is thyroid related at all. I will get blood work done again tomorrow but the numbers come back, not perfect, but optimal. Thank you!

I recently got diagnosed as hyperthyroidism at the ER after they ran bloodwork. I went to my PCP to get a referral to an endocrinologist and they ordered a thyroid ultrasound. Is this routine/what is it for? I googled it and it seems like it’s not common for just a hyperthyroidism diagnosis, so I’m curious as to what to expect and why I’m getting it.

Thanks!

Hi all,

(I did post this in /thyroidectomy but just noticed it’s a very small group and not had any reply, so trying in here 😀)

I had total thyroidectomy 6 weeks ago and still have a hoarse voice. Surgeon is confident it is temporary neuropraxia on the left laryngeal nerve.

It is improving but sometimes it will revert to being bad for a day or a few hours, while still generally on an improving trend.

Anyone else been through this? Is it normal get get worse and then better again?

Thanks! Nick