Cortisol Test(s)

Does anyone have information that regarding cortisol testing, that the midnight serum cortisol blood test is the best??

[rumpled]

Some of my friends swear by that test and say it is the best... but it never was good for me. So the answer is - you need to test several ways - blood, urine and saliva, and find out what works for you, and test more. There are also different ways and times to test all the other forms - so you just have to figure out what works for you.

My body liked 10 hour urine tests (10pm to 8am) and late night saliva tests. I did not do too many late serums - but the ones I did were not high, dang it.

Good luck!

[lbedford]

I've had the 24 hour and the salivary (several times.. normal, if you call .10 to .14 normal??).. I've heard that they have to be done under a controlled enviornment.. I asked my new endo because I heard the best test was the midnight serum cortisol (one reason I suppose, it is taken at the hospital). He said if I watched a scary movie or something it could mess it up. I stopped my old endo last spring after many, many tests. My GP just sent me to a new endo (I think this one is very knowledgeable). He' doing every blood test under the sun and of course the 24 hour urine. I've always been told 7 or 8 am to 7 or 8 am (24 hrs on the urinary)...so you did 10 hrs?? My GP demanded that I see the endo because my sugar is getting too high (7.9). My GP and the new endo went to medical school together.. so the right hand will know what the left hand is doing. My old endo is the one that said I didn't have a pit tumor even after it was confirmed I have an 8 mm (from an MRI last October). My new endo is going to order another 3T pituitary MRI with dynamic contrast. (News Flash..He can read MRI's). He reviewed my old MRI (I had it with me on my computer). Also, I'm presently on Sotalol for atrial fib (which just started in Jan), xanax for anxiety.. I've got just about every symptom that was ever mentioned.. ie loss of hair, loss of eyebrows, long hairs around my mouth and chin, can't smell, can't taste, gained 50 lbs around tummy, back and face, memory problems, one coma, 2 blackouts, peripeheral problems (which cleared up about a year ago???), infections (bladder, sinus), boils and on and on. I finally got my bladder pain cleared up with a urethral dilation, but I have a urethral discharge at times (which is one of the reasons I wanted a midnight serum test. I have chest pains at times, leg pains, spider veins (face and legs). I just got some tests back that I sent for when I paid to have a neurosurgeon look at my MRI to prove I had an 8 mm pit tumor... he did a blood work up. I read a lot about secondary hypothroid. My TSH was a little high (over 2.0) and my FT4 was .92 (it's suppose to be .93 to 1.1). The endo is looking into my thyroid problems as being caused by the pit tumor (that's what secondary hypothyroid is caused from). I can't swallow pills, my throat will hurt, so dry it feels like it's cracking, my voice will get real raspy), I choke easily. The thing is now my heart and my sugar are  causing problems, so this makes my diagnosis a bit more urgent. My spinchter muscle will go into spasms and feels like a boil, sometimes with constipation. I get confused rather easily, brain fog... like I said, on and on. Hopefully, this endo will be my answer for years of suffering (15 to be exact). Keep me in your prayers.. I so want this pit tumor surgery.. thankfully there is one right here that invented some special laser light for this procedure AND I'm impressed because my new endo has "Diplomate" in front of his name... I'll  try and remain calm .. I see him again on the 21st of Oct. Thanks for letting me bend your ear.. ;-))) Have you been feeling any better, I know this dang thing caused a disability for you.. I will continue to pray for you :)

[rumpled]

It is good that you are going to have a dynamic MRI.

Diplomate just means that the doctor is board certified - he took an extra test. Some docs have that and just have the thing on the wall, some just put board certified. Diplomate is actually an old way of saying it - so I would kinda wonder now if he is up to date.

I wonder what you mean by laser light procedure? There are several established forms of radiation used for pituitary tumors - three forms are currently used, but you should do research as they take 6 months to 5 years to take effect on a pituitary and while it is not open surgery, you can lose pituitary function. Usually therefore, radiation is reserved as a last form of treatment or used on inoperable parts - not as a first surgery. I keep up on treatments, and I have not heard of the laser used yet as a pituitary treatment - the pituitary is very close to the carotid arteries and the optic nerve - and there is not a lot of room to manipulate since you are tight in the sella, and the tumor would make it tighter - I am not sure how a laser would fit in there and to come in from the outside would impact all the tissues it hits.

Thyroid issues can cause dryness but so can other auto-immune diseases - are they testing you from soup to nuts? Your symptoms are consistent with endocrine disease - I hope you get a lot of testing and some treatment.

Thanks for the prayers! Hope you get better soon too!

[lbedford]

It was some special invention that he came up with (???) (the neurosurgeon). Here is his website page:   http://methodisthealth.or-live.com/vbtb/faculty/michael.cfm  

No, I don't want meds or radiation as a cure, either.. I want the dang thing removed.. period!!!

Yes, I knew that Diplomate meant that he studied under more renowned doctors in his field and passed more agressive tests than perhaps others in his field. He is not that old and he certainly knew what he was talking about when my husband and I were there for our consultation. That website address is the neurosurgeon that he uses. The endo listened and 'answered' ALL of my questions even when I presented him with the data from the other blood tests and questioned him on what I found... so, from what I've been through so far with docs (this will be my 3rd endo), I'm very confident because of what my GP told me about him and the fact that I have my GP behind me. This GP has sent me to some wonderful professionals so far, i.e. Gastroenterologist (had my bowels moving where others couldn't), Urologist (that found what was making my bladder pain where others couldn't), Dermotologist (removed my skin tags), and my GP even calls me at home after work and actually LISTENS to what I am telling him in his office. He is one of the few that is CONCERNED about what I'm going through. This new endo has the same traits as my GP, a good LISTENER and will answer ALL your questions. Yes, he is retesting me from soup to nuts... he said he's leaving nothing out. The blood test page had almost everything checked.. I've just got to be on the right track this time. Like you say, I've had enough endodummies to last a lifetime. He even got to the point of discussing surgery, because I told him, if I get on my knees and promise to be soooooo good, will you just send me for pit tumor surgery.. he smiled and said we have a few tests first, but then told me who he uses for a neurosurgeon. That made my day, but I understand he has to know the hormone that is being affected before he gives the go-ahead. I can't wait for that day.. I doubt if they get too many patients actually begging for surgery lol

[rumpled]

Per the site, they do gamma (the oldest type of radiation) and endoscopic surgery - which is the newest, so that is good. Just FYI - there are three types, and each has pros and cons about benefits, radiation leakage and side effects.

It is good they listen and act! I hope all goes well for you. Get a copy of the tests.

Hopefully you will get to surgery soon!

[lbedford]

Thanks for the uplift.. I can't wait to get some relief from this idiotic disease.

Yes, perhaps I'll get the best Christmas present EVER...surgery!!! (imagine, other folks wouldn't understand this)

Thanks, rumpled..   Hope your life is going better!!!

Do you still have to go through treatments or is it totally meds now??

[testdeprived]

surgery would be a nice christmas present!! good luck

[rumpled]

I am panhypopit - I will be on meds forever.
Occasionally I get silly comments from well meaning people who tell me that I would "feel better if only you could get off all that medicine" not understanding that I am replacing hormonal function for the most part and without at least a couple of the meds, I would die... it is frustrating as I will never be 100%. I still need some treatment.

[lbedford]

Yeah, as I recall you were one of the initial guinea pigs... why has it taken so long to get to the point of where we are with this disease.. it seems to be the most misunderstood sickness that ever came down the pike!!! These blogs show how and what people are suffering and dying from and yet... endos take their time, drs are not even schooled most times or even have a clue about this "pea size problem"... it's amazing, really!!! It's downright sad and disgusting at the same time. It ruins people's lives and yet hardly any medical professional is aware of what it can do, or why it's doing it...and their se la vie attitudes would stagger a billygoat...(their usual answer), take a couple tests..nope...sorry... all 'normal'... when a five year old could see the person is sick.. honestly... then after all the suffering we have to go and 'seek' and if we're lucky, after several hundred tries we 'find' a tiny bit of hope, all the while.. worrrying, wondering, suffering and checking our OWN test results to make sure that everything we know and have learned along the way doesn't get overlooked.. and on and on it goes.. for a very few they hit the 'jackpot', for others they struggle and suffer for years and years.. searching and suffering... it's certainly not fair that the whole world is not educated in this day and age on this sickness!!! Their answer..treat the symptom, dont worry about the source. My heart and prayers go out to you... it is one tough row to hoe. You are to be congratulated for hanging in there when so many others would have just given up... thanks for sharing and God Bless. I'm sure there's a miracle somehow in your future that even you are not aware of yet... The Lord is merciful, just don't ever give up!!

[testdeprived]

one doctor told me a 2mm microadenoma is like a pimple on my ***.

[lbedford]

I've heard that no matter how small one of these tumors are... they can cause problems.

TRY and get a dang doctor to go along with that. I have an 8mm (the MRI was taken last October), and I've been suffering for YEARS.. so we know it's been causing problems since it began... as you say a 'pimple' or even from a 1mm!!!

One neurosurgeon sat there, (after I put a litany of symptoms attached to the form you fill out) and say "Asymtomatic"... Asymtomatic.. I would hate to know what his version of Symtomatic was!!!  Hang in there, because it's like finding the oyster shell with the pearl in it... they're few and far between... Just don't give up. Did you have the 3T MRI done and only for the pituitary tumor, not just the brain one?? Also, it has to be done with the contrast and don't get a cat scan, that doesn't show anything.

[testdeprived]

i had a brain mri done ona  1.5 tesla 1.5 years ago. it showed a probable 2mm i just had a follup mri 2 weeks ago. i had it done on a 3t machine with dynamic contrast. probsbly the exact same machine rumpleds been on. the doctor i went to ordered a pituitary tumor mri for me, so that id get small slices, but they did the brain too at saint barnabas where i went. this time around they said a small miroadenoma can not be ruled out..what ever that means.

they prob didnt see one, but couldnt rule it out cause  i have a history of one.

[testdeprived]

im having the 24 hour urine,make sure to refridgerate it and that lab doe too

[lbedford]

Has anyone ever heard of the doc's office just taking volume from the 24 hour urine?? I was under the impression that 24 hours means just that, what the body releases in cortisol, not how much you pee in that amount of time?? The nurse told me it didn't matter if it all went to the lab because they spin it, etc., but wouldn't you have to have the 24 hour output to detect what amount of cortisol there was in the "spin"??  I'm confused

lbedford

[testdeprived]

i think it all mixes together. a trusted member on this board told me they dont really use all of it

[rumpled]

A 24 urine is processed by the lab tech taking the total volume. If there are more than one jugs, they should mix them, and take a sample in a small jar, and usually a smaller one too, and then they discard the rest of the sample. They run the cortisol and usually creatinine to check for oversampling (to make sure you did not test for more than 24 hours).

Lab techs often do not mix multiple jugs and just take a sample from one, thus invalidating the test,

[testdeprived]

yeah i got he creatinine blood test also...i barely filled one jug though..didnt even get half way lol

[lbedford]

Great info.. rumpled, you stated exactly what I thought the way the procedure was 'suppose' to be done. You should have heard me trying to explain this to the nurse when I knew she was explaining it wrong.. I finally told her that there are 2 highs and a trough during this time and if she discards any part of it, the spin will be incorrect... so my explanation may have been out there in left field, but it was the best I could do. I  have to drink so much with two of my meds that I think the doctor thinks I cheated. I saw the doc yesterday and he said my volume was 3.5!!! the norm is 1.5, he was talking about the creatinine being high, but he also had to admit my cortisol was high. He is now giving me 3 salivary night testings and a 1 mg dexamethasone for one night with blood drawn the next morning. I did hear him say the first time that "the 24 hour is the golden standard", but yesterday he said "I'm not doing the 24 hour this time because it's not reliable".. I really don't think he trusted my output.  

[testdeprived]

i dont even think i did a quarter of the container they gave me...i hope mine was alright???

[lbedford]

Don't worry... my husband said he would do about 3/4 of a cup (he doesn't drink that much.. although he knows he should).. mine was just 'way over the top" as usual.

You did fine.. I think they like it when you don't come in with 3 jugs lol

[rumpled]

I usually do not finish more than one - but it can vary. I used to have really high creatnine -and one doc said he expected it as I was a *really big girl* [cortisol rage there wanted to do damage for that comment].

The doc should test you for ADH, SIADH, that gravity thing etc. and figure stuff out - but no, they just blame the patient.

Do the spit tests when you feel great!

[testdeprived]

3/4 of a cup is only 6 ounces are u sure ur husband doesnt do more? i literally only did like a quarter of the container..i just hope its enough...although i doubt  i have a cortisol issue, i think mine is thyroid...either that or i am a mystery like rumpled is...cause it seems all my freaking tests are normal...if this is what normal is  irequest a horrid sickness lol.

[lbedford]

My husband has never had to "measure" because it's just me with the problems..I think he's pulling my leg.

I get so dang disgusted, I'm worried about my sugar and my heart.. I've been seeing docs since April 2009.. My sugar and my heart were fine last October. I had a neurosurgeon that told me at the time, that everything that was going on with me would be reversed after surgery but that was back then, but endos are like inch worms, slow as can be with normal after normal. Since Januray I'be been hospitalized twice with my heart and now my sugar is getting way up there. I'm worried about these, because I've heard that sugar, if it is let go too long, can't be reversed. Dang it all to blazes, my peripheral vision was acting up over a year ago, but then I got really sick and it dissipated. It has shown up again a couple weeks ago, I wish it would get to be the way it was, because the ENT told me that if it is giving me problems, then I would have no problem getting in right away for the pit tumor surgery. For the first time, a week ago,  I've just had a high cortisol (!!!) and I am so ecstatic over that, but now I have to do a 3 night salivary and a 1mg dex test... I just want this tumor out... I'm so tired of being sick with all the symptoms I have and my sugar and heart scare me.. why do we have to WAIT so dang long... when all it takes is is signature from an endo!! I suggested just do a biopsy on the tumor after they take it out... don't wait for me to die while they play the hormone game. My bowel pain and bladder pain are getting worse.. just another day in the life of a pit tumor. I'm so sick of it!!!

Why do you think it's thyroid?? What are you're symptoms??