I had a micoadenoma found by mistake due to mri cause of hearing loss. Just like all the others docs that see me the first thing he ask me was did I have PCOS I told him no...I was told that I had it in 2003 took meds couldnt handle them stop taking them and I got pregnant a month later. And almost every year I am tested for PCOS and they say I don't have it now last test before the endo was done by gyn in july 2009 and told that I didn't have it. I advise him of my headaches, my eye twitchings, showed hair on neck, face, stomach and chest (got it on the breast too), told him how test was done in july because my loss of sex drive was destroying my marriage and how I don't sleep. Make a long story short he orders tests...my 24 hour urine i collected 2600 mL (didn't drink any fluids after 4pm was scared that I was not going to have room for rest of urine to go in container) my cortisol free level is 62.4 creat ua 1.83 my fsh 4.13 my lh 4.57 my insulin 24.3 testos free 9.2 sex hor 24 testos total 63 albumin 4.8 and testos bioavial 20.1 my somatomedin test have not came back yet. My doc don't know I got a copy of my test results...he called me and told me he wanted me to take the dexamethasone (test result 1.1 mcg/dl) and he told me over the phone that the only thing that was high was my testosterone and that I have PCOS and that I have a non-functioning microadenoma and I WOULD NOT INTERFER WITH MY DEPLOYING IN NOV. He did not mention my cortisol being elevated or my lh being higher then fsh the rest of my results are in range from what i can tell my prolactin is 16.40 I am sort of stuck with the dr given to me being in the military. I really want a second opinion but I only can get that one time...DO I NEED ONE? I go back to the dr in 5 days. Don't know what to questions that I need to ask him? Im worried that I am not getting proper care and going to go down range and get severely sick.
You did not give ranges, so it is hard to tell exactly what is going on... but UFCs usually cut off at 34 or 50 in most labs in the US.
Yes, your doctor is ignoring you because he thinks the dex suppression test is a test of exclusion, in other words, since you got a 1.1 after taking dex that he can safely rule out Cushing's. He is wrong as he is not an expert. I forget what the magic # is but what it really means is that it is pituitary source.
This is from an endocrinology book - and in reality - 98% of my Cushie buds, suppressed and had it. It was the docs that were not reading the test and the patient correctly. No test is perfect.
" 1. Background
1. Two stage testing described below will miss cases
2. The low dose (1 mg) test is not adequately sensitive
2. Indications: Cushing's Disease Screening
1. Second line test
2. Start with 24-hour Urinary free cortisol level
1. Test measures adrenal gland response to ACTH
2. ACTH should decrease in response to Dexamethasone
3. Decreased ACTH should result in decreased Cortisol
4. Failure for cortisol to suppress suggests 2 causes
1. Pituitary gland ACTH over-produced or
2. Adrenal gland cortisol over-produced
1. Step 1: Draw Serum Cortisol at 4 pm on day 1
2. Step 2: Patient takes Dexamethasone 1 mg at 11 pm day 1
3. Step 3: Draw Serum Cortisol at 8-9 am on day 2
5. Interpretation (Based on Serum Cortisol on day 2, 8 am)
1. AM Serum Cortisol <5 mcg/dl (especially if 5 mcg/dl
1. Cushing's Disease
2. Repeating with Dexamethasone 8 mg determines site
1. Adrenal gland source will not suppress
2. Pituitary source will suppress "
Yes the range was the 4.0 - 50.0 and I tested at 62.4. Another thing that puzzle me is the amount of urine that I collected (tv=2600). But I don't understand how he can say that I have PCOS and have not did one ultrasound. I got my somatodedin test results today and it was 301 (range 138-410). I really don't believe that he will be truthful with me so that is why I went and got the my lab results myself. What do I need to ask him? Why is it that after the dexamethasone test did my headaches decrease greatly...not understanding the test and pill but I am glad that I have had very few headaches this week. However I know that it should not be use to confirm cushing's (I think just the location or something like that) I got this gut feeling that he is going to use the dexa test to say that I don't have it and I believe the magic number is 1.8 and mine was 1.1 so if it was supress it was not by much.
Yes, he is using the dexa test to say you are a-ok!
The PCOS thing is bogus. I happened to have PCOS AND Cushing's (nice, not) so even so, one does not rule out the other, and the guideline for PCOS do say that one must rule out Cushing's which he feels that he has done (in reality, he has not) with the dexa test.
My opinion, for what it is worth, is to take your tests and zip on over to another doctor who knows what they are doing. Is that an option?
You feel better as dex lasts a long time - the steroids are making you feel good. BTW, when it wears off, you may feel worse... sorry!
With the large amount of urine, did he want to test for ADH, or anything along those lines - are you always thirsty?
Yeah I don't understand how he say that I have PCOS and didn't do an ultrasound. I don't understand how every year just about I was tested for PCOS, Im not saying that I don't got it but I am not ready to rule out Cushings along with it. He also stated before that my tumor was not the cause of my left eye twitching which I think is bull...the eye is not the only thing that twitch my arms, legs and now my upper lip and upper part of my nose between my eyes. It don't take a Dr to tell me that my muscle twitches is not normal. Only other test that he order after he got my labs was the suppression test. Unfortunley, being in the military going to another Dr is not as easy as it is for the civilians. He told me that I will still be deploying and I leave in November. I will be gone at least 12 to 18 months which means that I will have to wait to I get back to the states, before getting a second opinion. Which really *****, so now I am deploying worrying about my life in more than one way.So now I am just going to how to lean and depend on God for my health and safety while deployed. I go back to the Dr tomorrow so I will give you an update of what he says. I can't lie...I wouldn't mind having some more of that dexa stuff because everyday all day with headaches was killing me. I will post again tomorrow and let you know what Dr Stupid says
Diagnosis of PCOS without an ultrasound is not... sound. I would say that it is not valid.
Twitching is another issue and requires different tests. It is not part of a pituitary tumor - that is neuro-muscular. But no doc looks at an eye twitch and sees anything. They see a tic. Sorry. You will just get BFD - benign fasculations disease unless testing shows something else. I hope it is just that.
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