I don't know what's going on with me, anyone help?

[LondynnStella]

I'm a 16 year old female, and I went to the gynecologist around september 2015 because of abnormal periods. I had some blood work done there and my thyroid levels and prolactin levels were really high. I repeated the blood work a few days later, with levels still high. A week later I had to get an MRI done on my brain and a 3mm tumor was found on my pituitary gland. In November, I went see and specialist and the endocrinologist said it was probably just a cyst and put me on 75mg synthroid for my thyroid. 2 months later I went back for more blood work, and my levels went up even more. They changed my synthroid dose to 125 mg. I was then ordered to take a 24 hour urine test for my cortisol. My cortisol and ACTH were very high. So on monday I'm taking the dexamethasone suppression test. They're not really giving me much information on what's happening, and I'm really curious as to what's wrong with me. I'm thinking it may be cushings disease, but i'm not quite sure. Anyone know any possibilities?

[Barb135]

If the doctors are only talking to your parents, then you need to talk to your parents and get them to understand that they must get copies of the lab tests and make sure for themselves that the right tests are being done.  

TSH is not a reliable test for adjusting thyroid hormone medications and if that's what your doctor is relying on, you will kept sick.  As much as we want to help you and understand how you feel, there's not a lot we can do without seeing your labs, as flyingfool already stated...

[flyingfool]

Tell your parents to ask for the test results in writting. By law in the USA they are REQUIRED to provide the actual test results to you.

This all may be a bit hard because you are still a  minor. So you have to depend upon your parents to advocate for your.

unfortunately Dr's can be very arrogant and persausive and all high and mighty because they have the two letters (MD) behind their name and can sometimes easily intimidate people.

Remember that Dr's while well educated and have a degree, are just a human being.  It is unfotunately very often that Dr's under treat thyroid patients keeping the person feeling less than well.

It is very hard to comment much without the actual test results INCLUDING the reference or otherwise known as the "normal" range.  As each lab uses different ranges.

What symptoms are you having?  How are you feeling?

When you say "high" readings or test results, I'm assuming that means TSH test results.  If that is the only testing being done you need to DEMAND that BOTH the Free T4 and Free T3 tests be performed.  As these are the ACTUAL two thyroid hormones.

TSH is a pituitary hormone,  NOT thyroid hormone.  Any Dr that ONLY tests and uses TSH (which can vary by as much as 70% within a single day) is insufficient and will almost certainly keep you feeling like crap!

[Barb135]

What do you mean "they've been very blunt about everything"?

Isn't the doctor giving you (or your parents) copies of your thyroid labs?

[LondynnStella]

Nope, everything is usually said over the phone, and they're usually telling my parents that my levels are high and then tell me I need to take another test.

[Barb135]

Please post the actual thyroid hormone levels, along with their reference ranges.  It sounds like you might possibly have a pituitary adenoma, which is affecting all of your endocrine hormones... Treatment should be removal of the adenoma.

Ask for, and expect a full explanation of what's going on.

[LondynnStella]

I'm not sure what my levels are, they've been very blunt about everything.

[des900]

yes it might be cushings syndrome. also high cortisol itself can reduce t4 to t3 conversion so can result in hypo symptoms. also its wroth while to check vitamin d, b12 and ferritin levels once in while to make sure they are in optimal range.