I'm still struggling with regulating my meds after TT in Sept 06. I'm currently on 112 mcg levoxyl since April 14. I was on 125 mcg (after abandoning T3) but began to suffer bad panic/anxiety attacks. Tests showed my TSH was very low - which would be okay, but my Free T4 was very high - at the end of the scale - so my dose was lowered to 112 mcg.
I'm getting better regarding the panic/anxiety attacks and the heart is slowing down. However, my hair loss has increased, I'm gaining weight and depression has crept in again.
I'm currently working with a nurse practitioner. I just went through a series of blood tests that included checking magnesium, folate, testosterone, iron, and other levels. Some of the levels were low, so we're going to work on them.
She decided to check my cortisol at the last minute via a "one-shot" urine test - I didn't collect urine for 24 hours, just one sample in the morning.
My level checked in high - just within the normal range.
My question is - any experience with high cortisol levels out there? How did you treat it?
The nurse practitioner is sure that it's because my body is in crisis with the whole thyroid mess....but she's not too comfortable with wait and see and wants me to seek treatment now (thru a biochemist who has a ph.d. in nutrion and physiology). I trust her - I'm glad I found her.
The Following User Says Thank You to birchtree For This Useful Post: mom3mie (08-09-2011)
Glad you're feeling a little better. It did sound like you took quite a trip on the t3. Fun ain't it?
The hair loss could be temporary. After a nice trip like that, there's often a shed. It can be quite spectacular but it does stop as soon as the hair shafts that were damaged finish dropping their load.
Now, a one shot urine test performed at the cortisol peak in the morning that still falls in the normal range is not diagnostic. Before you worry about it, I'd really have further testing done.
I had the pleasure of being on prednisone for 2 years about 25 years back. It has the same effects as cushing's (high cortisol). One of the first things I noticed was a water buildup that quickly came in check when I went salt free but it was replaced by a fat buildup in some really strange places with the lower arms and legs going skinnier. Oh, and facial hair, moon face, high blood pressure, emotional disturbances, etc., etc.
Cushing's is usually caused by an adenoma on the adrenals or pituitary if it is not being caused by taking prednisone or other cortisone drugs. Treatment is removal of the adenoma. On rare occassion, they remove the adrenals but that's a pretty drastic measure.
If I were in your shoes, I'd have a few more tests done on the cortisol before you start looking into treatment and get those low levels of the other stuff worked on.
I agee with Helen, you really need more testing on adrenals before considering any treatment. The 24 hr saliva is the best, that way it is checked four different times throughout the day so you have a complete picture of how they are doing.
I know in the process of the adrenals becoming exhausted in an effort to keep up they will start producing large amounts of cortisol which will give high cortisol test scores and then they become exhausted and then your labs with show the low cortisol readings. There are differents stages to the exhaustion process according to lab readings. By the time I finally got tested mine were completely shot so my cortisol reading was very very low.
Not sure how your surgery may have played into all of it. It and trying to get adusted on meds certainly would have been stressing to your adrenals, but not sure if it would be a tempory thing that would settle down on it's own or not. Proper testing would be the way to find out for sure.
Never known anyone to see a biochemist before, if you do wish you would post back your experience.
I agree with Helen. I've never even heard of a person having a "one-shot" urine to check cortisol. I have heard of having a random blood draw to check cortisol, though. I would ask to do the 24-hour urine, not once, but twice, maybe a few weeks apart, to see what a true picture is or your cortisol output.
And definitely get the low things up where they should be. That could make all the difference!
I agree that a 24 hour saliva test will give you a better picture of what kind of shape your adrenals are in. I have tested low and my doc has started me on some supplements to bring it up. I know if they are bad enough that treatment is hydrocortisone - whether they are high or low.
Hi I just wanted to let you know that there aren't any 24 hour saliva tests. There is however a 24 hour urinr test which is most useful for diagnosing cushing's along with 8 a.m. sharp ACTH SERUM and a midnight salivary test.
I am recovering from cushing's and if you'd like more info pm me! Good luck!
By the way, with the ACTH serum blood draw at 8 a.m. sharp (there's a very good reason for this) the vial should immediately be put into a cu[ of ice as the lab tech draws! Extremely important!!!!!!!!!
It's also important to get a 4 p.m. serum draw. The reason is for checking the diurnal variations.
A one time urine collection means nothing whatsoever. Even a one time blood test is often inconclusive, because just being nervous about the test can temporarily raise cortisol.
You don't often hear about this, but another point in favor ot the saliva test is that it is less prone to artificially raising cortisol, because you do it in the comfort of your own home.
I too had high cortisol at one time (24 hr. urine test), but that wasn't just near the top of the normal range. It was 2 times the top of range. But then I was in the hospital, so that alone could have raised it.
Any tests I've had since then (but a good year or so later), showed it lower that normal during at least two points in the day.
I would CERTAINLY not opt for any adrenal related treatment just from that one worthless test.
Where is your Free T3 level at?
What "treatment" is this practitioner wanting to start?
My opinions only, not medical advice. Always follow advice of your Doctor, not what I say here.
Hi I just wanted to let you know that there aren't any 24 hour saliva tests. QUOTE]
Could you elaborate on that some? There are people that do them all the time. Am I missing something?
24 Hour Urine Cortisol-you collect all of your urine output for 24 hours and keep it refrigerated. Most times it is best to obtain several of these as some people with cushing's are cyclic patients. (I was cyclic)
Salivary Cortisol-It's a long cotton swab that you run along the inside of your mouth. They then obtain the levels of cortisol. Most beneficial is the midnite sample. But also good to obatin an 8 a.m. and 4 p.m. swab as this will show a dr. any loss of diurnal variations.
It's critical that testing be done over a good period of time as many patients can be observed with normal or high normal results and have cushing's. (I was one of those) After much testing it was found that I did have loss of diurnal variations, and high cortisols at midnite as well as high acth at the same time.
ACL labs in Milwaukee Wisconsin is the absolute best for doing salivary samples as Dr. H. Raff developed the test and uses the best guidelines and is an expert. (I used them)
P.S. Please let me know what else you want to know!