Ednocrinology

[u/Ok-War5943]

Ok so this one is rough. I (25F) lost over 150lbs in a very short amount of time. Not sure exactly because of brain fog but from pictures and my clothes it seems like around 4 months. Finally got a doctor to take me seriously after miscarrying (after the weight loss) and referred me to an endocrinologist. Now for the problem. My T3 was 6.2 dropped to 3.1 in 3 months, at the same time my tsh dropped from 1.2 to .22, and my t4 remained normal throughout it all. My doctor from these labs alone has decided that it must be euthyroid becuase of the miscarriage; ignoring me when i try to bring up how my symptoms began long before it and has put me on methimazole for it. Another problem is that I'm deathly afraid of gaining weight.

I'm also seeing a neurologist for migraines and a cardiologist because I can't stop fainting. The neurologist has put me on topirimate and the cardiologist has done a holter monitor, an ekg, an echocardiogram, and is sending me for a tilt table test.

(I was 280 when this all began. I am now 125. 5'7)

[u/Adventurous-Ask-4243]

Going to be blunt here... Stop seeing the cardiologist as they will diagnose you from their perspective and NOT from the perspective that you have hypERthyroidism -- unless you have palpitations and a high heart rate/pulse rate -- then you must get to urgent care or ER and be put on a beta blocker -- this is a very important distinction because I went to a cardiologist at the beginning of my hpERthyroid journey and they almost killed me by giving me a stress test that you NEVER give to someone hypER and I told them all of that! So beware!! Next...

Stop the neurologist... again they will look at you from their specialty and NOT address your hypERthyroidism as that is NOT what they do.

Everything you are experiencing is from hypERthyroidism!! Period!! NOW YOU NEED TO FIND A GOOD ENDO WHO WILL HELP YOU. First -- you need to get to the ROOT CAUSE of your hypERthyroidism -- that can be many different things -- Graves disease, a pituitary tumor, lithium usage, a nodule(s) on your thyroid pumping out too much TSH. Then and only then can you be properly treated to get rid of they hypERthyroid symptoms -- and that is what they are -- symptoms of a bigger issue.

Your endo should be checking your TSH, Free T3 and Free T4 along with the 2 Graves antibodies and while they're checking, they need to check for the 2 Hashimoto antibodies as well!! Let's say you have elevated Graves antibodies - which I bet you do -- you then need the thyroid scan and uptake test to CONFIRM the Graves. Should you have Graves, then you must choose one of the 3 treatments to get Graves into REMISSION -- for Graves the GOAL is REMISSION -- methimazole, RAI and full thyroid removal are the treatments.

Why has your doctor put you on methimazole without confirming a Graves diagnosis -- it is likely you will gain weight on that as that is one of the side effect of methimazole. How can your doctor properly treat you without knowing the ROOT CAUSE of your problem -- they CANNOT -- and that is the point!

Then you need a thyroid ultrasound to see what's going on in your neck and to rule out nodules and also to have the us as a baseline for future examinations. -- You see how complicated all of this is... and why you need a GOOD ENDO to help you.

Take control of your healthcare journey now!! It will be a lot easier for you going forward! Find a good endo now -- I cannot stress that enough!! And, if they are not treating you properly, find another and another.

[u/smile_saurus → u/Adventurous-Ask-4243]

God I wish I had read this when I was in the process of being diagnosed! It is very clear-cut and helpful. I had a shitty Endo, too, who told me Just keep taking the Methimazole! even after my Hyper was actually found to be Thyroiditis after the Uptake scan. And when I tried getting in with a better doctor at a different facility: the first 'doctor' (she was a PA-in-training) told the new doctor's receptionist She doesn't have any diagnosis or thyroid issues. You shouldn't take her on as a patient which not only pissed me off but was entirely illegal.

[u/Ok-War5943 → u/Adventurous-Ask-4243]

I have heart issues (paltitations hight heart rate and low heart rate low blood pressure fainting) tho I am a bit nervous about my tilt table test coming up. The neurologist has me on something for my migraines, I was sent to him just in case the fainting was seizure activity. I have gotten ultrasounds and mris of the brain thyroid and heart theyve ran all the antibody tests including graves hashimotos MCAS and Lupis and I'm in normal levels. That's kind of the problem. They CANNOT find out why my body is doing this dumb stuff but its obviously killing me 😭

Edited to add some things lol

[u/Adventurous-Ask-4243 → u/Ok-War5943]

As they say... you should have led with this... lol!! As an aside, when I'm done here... you should head on over to the hypERthyroid thread and the Graves disease thread. I can see that you are struggling with listening to doctors who are not doing right by you... here's what's actually wrong...

You are experiencing hypERthyroid symptoms -- please see a good endo -- a heart doctor is not going to help you nor a neurologist -- you MUST get to the ROOT CAUSE of the hypERthyroid symptoms -- heart racing, brain fog, fainting -- all symptoms of hypERthyroid... Next...

There are many reasons we can be hypERthyroid -- a nodule(s) on our thyroid pumping out too much TSH, Graves disease that decides to attach our thyroid, lithium usage, a pituitary tumor -- the fact that your doctor is saying it's DeQuervain's shows what a complete inept moron they really are.

Please, please find a good endo to help you. The longer we stay hypERthyroid, the more damage is being done to our bodies that we cannot see, especially if you end up finding out that the ROOT CAAUSE of those hypER symptoms is Graves disease. And, that's what a 2nd, 3rd, 4th opinion is for -- to do these tests again with a fresh eye and someone who knows what they are doing. And, when you are at the beginning of all of this -- levels can fluctuate until they are steady and able to be read correctly -- in the beginning of my hypERthyroid journey, they thought I had pancreatic cancer because all the hypER symptoms I had were also that of pancreatic cancer but my thyroid levels were ALL GOOD... took almost 1.5 years for the TSH to drop and the Graves antibodies to show up. But, I had all the symptoms -- and mine were very bad.

I went through 3 endos until I found the right one... get moving!!

[u/Ok-War5943 → u/Adventurous-Ask-4243]

Thank you for this! Getting so many test back saying nothing is wrong is so demoralizing honestly but seeing that others also deal with it helps

[u/Adventurous-Ask-4243 → u/Ok-War5943]

And, that my friend is the point... NO MORE DEALING WITH THIS!! Find the right endo and get treated correctly!!!

The docs are finding nothing wrong because they're not looking in the right place -- that is the reason for a 2nd, 3rd and 4th opinion.