Cortisol is abnormal. But the suppression on dex may wipe the results out in the eyes of the doc.
ACTH can be easily botched in the lab.
Estrogen may be low since you are male. Testosterone may be low due to high cortisol.
Are you going to see the doctor again or get a call?
a call from this doc? she called me after my appointment one month ago(yes took this long to get the labs from her) she says my problems are not endocrine related....and he doesnt think my cortisol levels are abnormal cause im young....
all i know is my numbers dont look right to me, and i feel like crap everyday and doctors seem to think im normal......
and noone believes me lol.
and my fsh and lh are around rpe puberty levels
Take the tests and go elsewhere... you will not be the first nor the last to not be unhappy coming from there.
i have no idea where else to go at this point..and idont have the money to keep GUESSING....i need some direction. i dont know what to do next> my dad is getting more frustrated with me...saying the columbia endo i begged him to see is saying im ok...
any guidance on my next step? cause right now im clueless...and since idont work...im eating my dads money...
btw do y numbers look concerning to you? you said my cortisol might not be a problem because my dex was fine?
I've got comments but need your blood counts like Hct, Hgb, MCV, etc. Also units would be helpful.
If you do some research, you will see that the dex suppression test is used for Cushing's.
Here is an excerpt from a website:
"This test is performed when the health care provider suspects that your body is producing too much cortisol. It is done to help diagnose Cushing syndrome and identify the cause.
The low-dose test can help tell whether your body is producing too much cortisol. The high-dose test can help determine whether the problem is in the pituitary gland (Cushing's disease).
The level of cortisol in the blood normally regulates the release of ACTH from the pituitary gland. As blood cortisol levels increase, ACTH release decreases. As cortisol levels decrease, ACTH increases.
Dexamethasone is a human-made (synthetic) steroid that is similar to cortisol. It reduces ACTH release in normal people. Therefore, taking dexamethasone should reduce ACTH levels and lead to decreased cortisol levels.
If your pituitary gland produces too much ACTH, you will have an abnormal response to the low-dose test, but a normal response to the high-dose test."
You had a normal result on the dex test, and therefore, the doctor is saying what you had was normal. Not all doctors think this way, but this is the mainstream thinking however. The doctor is, according to the new guidelines, supposed to do several tests - which that endo did - and if there is clinical suspicion, which I guess they feel there is not, they can continue to test, or opt to not test. There are a few things that can raise cortisol - normally it is a disease process, but there can be other things. The doc would have to evaluate you, your history and do an exam to see how it all fits.
I can't tell you where to go. There is or will be a doctor search feature here soon.
Weird that you had high TIBC before and low ferratin now.
Of all the tests, only the cortisol seems the most concerning and the dex will wipe it out in the doc's eyes.
so if im correct....you are saying my labs are normal then???
acth of 9 is normal?
pltelet counts below the range everytime are normal?...idk
and ive never heard of a doctor that requires a doctor to refer u to to them.....i just called the hematologist, and they said a doctor must say i need to be there. I have insurance where refferals arent necessary also
Here's my take:
-Your adenoma is probably not a secreter.
-The ACTH was borderline low
-The 24 hour urine cortisol was high
I think that this certainly justifies more testing of the adrenal axis in particular. Something does not seem right to me in this part of the testing
-Your Hematocrits and Hemoglobins are consistantly a little high. I would rec that Polycythemia family of conditions be ruled out.
-Lh and fsh are at the post puberty level and your testosterone in mid-range
So your sex hormones are probably good.
-Chloride 100 (102-109) Can be elevated with hyperthyrpoidism
-Glucose 65 (70-105) A little low, don't really know why but do you get hypoglycemia?
-Ferritin 55 (29-248) could be iron deficiency anemia, have to look at (MCV) the Red blood cell to see, *also I'm making a mental flag because you've been running these slightly high hematocrits and Hemoglobins.
-T4 free 1.21 (.7- 1.24)
tsh 1.13 (.32- 4.05)
Could actually be that you are hyperthyroid, could explain the low chloride and glucose
-You may be hyperthyroid but it does not look like it is pituitary in nature? I don't know enough about this but so other people think that other tests should be done?
-Somatomedin c 267 (127- 424) This is what is used to check your Growth Hormone levels
One a correction to something i said above low chloride can mean hyperthyroidism
and #2 You did not have a stim test right? What do you mean Rumpled about normal result on the dex test?
i didnt think i had a stim test, but figured sicne i dont know what all the tests mean, rumpled might have thought i did, and i trust her more than myself ha
If you suppress on dex, that is a normal result. So that may, in the doc's eyes, wipe out the abnormal UFC. If you do some research though, that test is kinda iffy to some docs, and golden to most - some use it as a test of location, some use it as a test of exclusion. Columbia obviously used it as a test of exclusion. I failed all dex tests (low dow, high dose, etc.) and still was Cushingoid - I know lots of people in that boat.
From what I see, it does not appear there is a stim test here.
As for the low chloride - I have that constantly. I was told it was not low enough to be a factor. This is from a website:"Decreased levels of blood chloride (called hypochloremia) occur with any disorder that causes low blood sodium. Hypochloremia also occurs with prolonged vomiting or gastric suction, emphysema or other chronic lung diseases (causing respiratory acidosis), and with loss of acid from the body (called metabolic alkalosis)."
I can make mistakes - I am far from perfect!
i went to my primary doc today...who is the only doctor i love....
and she reccomended me to call the rare disease clinic at nih...she said the cortisol looks high to her....and she agrees small tumors can cause problems.
shes a very caring doc....but obviously as a primary there's not much she can do
when say you failed all dex tests does that mean you had a noral result..or an abnormal one? aka did you supress or not? im guessing you supressed.
i just wish i could get into the rare disease clinic. i think they have the best shot at helping me.....plus theyre in maryland so its not far.
When I say I failed, I mean I also suppressed so I had a normal result (although some were abnormally low). Even on dex-CRH which is a NIH gold standard test. NIH may not take you based on the dex - they are proponents, sadly, of the test. I tried to get in there too. But if your doc sends in all your stuff, you may be able to get in.
This just came out:
"High Prevalence of Normal Tests Assessing Hypercortisolism in Subjects with Mild and Episodic Cushing's Syndrome Suggests that the Paradigm for Diagnosis and Exclusion of Cushing's Syndrome Requires Multiple Testing.
Many Endocrinologists believe that a single determination of eucortisolism or a single demonstration of appropriate suppression to dexamethasone excluded Cushing's syndrome, except in what was previously thought to be the rare patient with episodic or periodic Cushing's syndrome. We hypothesize that episodic Cushing's syndrome is relatively common and a single test assessing hypercortisolism may not be sufficient to accurately rule out or diagnose Cushing's syndrome and retrospectively examined the number of normal and abnormal tests assessing hypercortisolism performed on multiple occasions in 66 patients found to have mild and/or episodic Cushing's syndrome compared to a similar group of 54 patients evaluated for, but determined not to have Cushing's syndrome. We found that 65 of the 66 patients with Cushing's syndrome had at least one normal test of cortisol status and most patients had several normal tests. The probability of having Cushing's syndrome when one test was negative was 92% for 23:00 h salivary cortisol, 88% for 24-h UFC, 86% for 24-h 17OHS, and 54% for nighttime plasma cortisol. These results demonstrated that episodic hypercortisolism is highly prevalent in subjects with mild Cushing's syndrome and no single test was effective in conclusively diagnosing or excluding the condition. Rather, the paradigm for the diagnosis should be a careful history and physical examination and in those patients in whom mild Cushing's syndrome/disease is strongly suspected, multiple tests assessing hypercortisolism should be performed on subsequent occasions, especially when the patient is experiencing signs and symptoms of short-term hypercortisolism.
Division of Endocrinology, Metabolism, and Molecular Medicine, Charles Drew University of Medicine and Science, Los Angeles, CA, USA.
Name: Hormone and metabolic research = Hormon- und Stoffwechselforschung = Hormones et metabolisme
yeah, i dont consider that a new finding...jsut another finding that has been known by the community butt aken ages to figure out by the medicalsystem....im sure YOU knew this already -_-.
btw that's horrible that you were denied by nih.....i cant think of a peerson who could have had a more mutally beneficial case with them. youd make a great lab rat....lolo
It is newly published, at least.
Yeah, I would be a great rat except they only want them with one thing wrong.