How was the ACTH done? Was it in a chilled tube? Did the tech take it and run it to a centrifuge, or was it put into a bin? If the bin, it can be low simply due to lab handling. ACTH degrades quickly so unless done properly, the lab can mess it up.
With empty sella - labs are primo. Your test could be interpreted as normal as it was 2x the baseline - but the doctor also may have another range he is looking for as well.
Are they checking all the pituitary hormones - in case you are hypopit or panhypopit?
Thanks for your reply rumpled. The tube was chilled and they took it immediately to the hospitals lab, so as far as i know it was done correctly. My doctor did call me and told me my cortisol was normal but at that time we were still waiting for the ACTH test to come back.
My question really is, now that the plasma ACTH test has come back, how can you have a normal cortisol response but low ACTH? What does that show, if anything? Some people are telling me that's indicative of a pituitary problem and not an adrenal problem. I was told "It appears you have secondary adrenal insufficiency, meaning your pituitary gland is not producing enough ACTH to tell your adrenal glands to produce cortisol. However, your adrenal glands appear to be functioning properly WHEN they get artificial ACTH." Do you think that is true in your experience? I have chronic daily headaches and after my ACTH stim test, within 15 minutes I had no headache for the first time in months, I felt almost normal again.
My doctor also tested my TSH, Free T4, FSH, LH, and IGF-1, all of which he said were within normal ranges.
Yes, it indicates secondary in this case - so the adrenals work but not the pituitary.
The pituitary signals the adrenals to work via ACTH and the adrenals get the signal and release cortisol, then the pituitary senses the cortisol and adjusts ACTH.
If the issue is the adrenals not working, the pituitary pumps out tons of ACTH trying to make the adrenals release cortisol - and most times people get tan.
If the issue is the pituitary, then the adrenals just never get the signal and so just sit there waiting for the signal.
Eh on the thyroid tests... IMHO that is a lousy panel that does nothing to say what the thyroid is really doing. No other hormones or even vitamin D?
Thank you rumpled that makes a lot of sense actually. Hopefully my doctor is as smart as you! What other type of thyroid panels are there? Every time I've had my thyroid tested they always test those same things. He did feel my thyroid, he said it felt normally sized but hard which I thought was weird. It would be so nice to finally figure out what is wrong. I've lost 40 pounds in a year unintentionally despite eating a ton of food, I throw up every morning, have severe headaches daily, so many other things too.
He didn't test any other hormones the what I listed. My rheumatologist does test my vitamin d levels every 6 months though because I always have low vitamin d. When I first started getting really sick I was referred to him and after about a year he diagnosed me with undifferentiated connective tissue disease and put me on this daily medicine which has made me feel better in some ways but I am still ill in other ways every single day so I feel like there has got to be something else going on also. It's like some impossible puzzle that sits on my coffee table and never gets finished.
It is not a panel - but free T4 would show thyroid storage and free T3 shows the active form of the thyroid hormone being used. Plus you should have antibodies at least once. In your case Graves (especially since you have another auto-immune disease!). And and ultrasound at least once - you cannot really feel much - mine felt normal there was all sorts of stuff hiding in there LOL.
You have low D (lot of us do!) what about iron? Other vitamins and minerals okay?
The whole medical mystery thing is no fun...
Well the endocrinologist called. He said that there is nothing wrong with me. He did agree that my ACTH was low but he said my cortisol tripled after the stim test so that indicates everything is working fine. Looks like I am back to square one. I showed my GP my lab results and he thinks I need a second opinion so I guess that's my next step. I will ask for those thyroid tests at my next doctor, if I can find one. I hate starting over.
I have low Folic acid, low potassium, low sodium, but I've never had any other vitamins or minerals tested. They just recently put me on 50,000/weekly vitamin d so hopefully that will get my levels up.
And your absolutely right, being a medical mystery is not fun at all. Meanwhile I feel like my life is wasting away before my eyes.
The endo should have looked into your renin and aldosterone with the low K and Na and the normal stim test.
It could be that you are just on the verge (but if you did really well, then cortisol can be off the table) or it can be the renin/aldosterone issue - which can also make you feel like uttter poo - and be fixed with fludrocortisone. So the endo missed a whole hormonal loop??? I often wonder why the endos don't know how to see the clues and test.
Have you tried increasing salt? Do you feel better after a chug of tomato juice?
Actually I was just reading about aldosterone last night and its correlation to low ACTH, sodium, and potassium and how being deficient in it can cause low blood pressure. Definitely worth looking into I think because I really do feel like utter poo and it would explain the normal cortisol reading and the low ACTH. I actually do eat a ton of salt and crave salty things, but despite way over salting my food, my sodium levels are always on the last point of the normal range. I thought they would have been sky high. After talking with you and others, I know realize that my endo did not do very thorough testing. Its unfortunate that I had to drive almost two hours away to have him just blow me off. The general consensus I'm getting from people is that unless you have diabetes or a thyroid problem, endos are pretty worthless. I seen my GP the other day for an infection and asked him what he thought of my test results and he seemed to think the low acth could be a problem so referred me to this guy in town who does hormone testing, both saliva and blood. So he made me an appointment for next Wednesday. He's not an endo, he primarily does sports medicine and family practice, which I thought was weird, but has a side practice also in which he handles all types of hormone issues. I'm really hoping I will get some answers out of this. I am trying to make a list of the tests I think I need to take with me to my appointment, but its a lot of information to take in and understand. I'm just hoping this one will really listen.
Did the endummy even ask about your salt intake?
You are not the first or the last to get a lousy endo... they just don't seem to do the testing. Even my local endo who is supposed to be primo still wants to judge me on some testing that is invalid (TSH - post op pituitary I have central hypothyroidism and my TSH is always .0004 or lower) and never at the same time - while my good doc always tests me the same way - same time, always off meds, always fasting etc. so he knows there is consistency in how my tests look. Sadly the ACTH is pretty much always botched in handling though.
I hope the other doctor takes an interest and you get some testing under your belt - if you have more on paper you can get into a pituitary center.
Actually with the empty sella, you should shop that MRI around to the pituitary centers and see if you can get in and get testing!
Endummy lol. No he didn't ask about the salt intake, but I mentioned it. I hope he takes an interest also, it would be nice to find someone who will actually listen. I have heard he tries to push supplements as he sells a line of them at his office. But I figure if I can a least get the testing then I can take that with my MRI and maybe get into a pituitary center, I'm not getting my hopes to high. The bad part is the saliva testing has to be paid for out of pocket with the possibility that my insurance may reimburse, insurance is a whole other sore subject of mine.
Unless the saliva testing comes from certain labs and ordered by the doc, it won't be covered. Now the major labs, as well as the lab that developed it are covered (at least by most plans).
I always tend to shy away from the supplements now having tried and spent tons of $$$ for .... no results.
Empty sella means something for sure is going on up there. Your pit can be squished. Salt intake should be asked! It is critical.
I seen the new doc today. He was nice and he listened (at least for now) and ordered blood tests for ACTH, Aldosterone, Renin, Free T3, TPO, TSH, Reverse T3, DHEA-S and Prolactin and saliva testing for Diurnal Cortisol, Progesterone, Testosterone and Estradiol. Do you think those are good tests? He did ask about my salt intake and he also said that you can't always treat by the lab ranges because low normal for one person can be fine but low normal for someone else might be unhealthy and you have to actually consider the symptoms that person is having. He actually wasn't pushy with the supplements but did recommend Vitamin D and Iodine but I told him I wanted to wait until the testing was finished before I added anything new. I wont have a follow up for 5 weeks though, I hate waiting. But I hope this will finally give me a more complete picture as to what's going on.
Vitamin D is probably a good idea. You can get a good D3 supplement at any drug store - just make sure it is D3, a decent quality brand and a few thousand i.u. I take it myself as I am low.
I am not familiar with iodine at all. Sorry.
That seems like a decent set of tests to start - he covered more androgens and at least one more pit hormone.