Hi just need someone to talk to. yesterday the endo called me and said i needed a stim test. so today went for it, but no one could cannulate me, i hadthree doctors tying it in over an hour (total of 12 times) so you can imagine how stressed i was by then. Anyway endo decided to leave it and just do a baseline cortisol not atch, aldosterone or anything else. and he remarked at least after all that i will be stressed enough to show a normal level to rule out addisons!
do you think that my veins were collapsing as a sign of addisons i am constantly getting dehydrated as my results show (also i have very slow ability to concentrate my urine so endo told me to cut down on my fluid intake)? About 6months ago iwas hard to get blood off but certainly not this bad- they actually said it is not possible to cannulate therefore what happens when i feel worse (today i felt relatively ok by that i mean i could walk from the car park to the room and not faint).
Anyway the stim test is abandoned and they wont do this now and are going to base the diagnosis on a cortisol that has been taken under extreem stress and say that it is normal. i dont know what to do im loosing faith rapidly with this lot, cant they see that not being able to start the test indicates something, if the stim test is the total test to diagnose addisons what do i do, im not getting any better? please post back, thanks.

My endo had trouble with the cannula too. She ended up giving my the cortosyn via IM (intramuscular). I was freaking out, since I did not know whether this could upset the results of the stim test. I later did a search on the web and found out that the IM is a perfectly acceptable method of cortosyn administation ----at least according to the standard med literature I read ---others here may know more from experience.

At the least, it seems your drs should have known this:confused: and been able to complete your test.

I can't answer your other concerns, but my impression is that drs of this sort are not interested in scientific validity of tests such as this, since they seem to feel often, that such tests are unneccesary and second to compaining patients who have a lot of somatic complaints and blame their endocrine function.

Was there anything specific which originally prompted your dr to order the stim test?

My test was less than valid, since the lab "forgot" to draw my ACTH in the morning when my AM cortisol was drawn. It was just ridiculous. The dr is like "oh, well, we don't really need that".:mad::confused:

Sorry you had such a bad experience...
Having bad veins is not diagnostic of addison's though... tons of those with cushing's (the polar opposite of addison's) have the exact same issue so... it happens.
It does help to hydrate well for a few days before the test so you have the best chance of getting a cannula in... that being said, if the stupid lab is not going to draw all the necessary tests, it is a bunk anyway.

Lots of times they can use smaller needles, warm packs etc...

The urine is a separate issue but should be looked at.

I have had to resort many times to looking up the protocol for tests before I go in, print it off and make sure it is followed. I tick them off but... I have had many tests goofed up and it contributed to the over decade length of time it took to get diagnosed with Cushing's as the ACTH kept coming back low due to lab error! It has to be chilled when drawn, spun immediately and frozen promptly or it is invalid.

my son cannot concentrate his urine, he has diabetes insipidus, due to damage to back part of his pituitary gland.Has your endo mentioned this at all? diabetes insipidus means that without meds, any fluid that goes in your body comes straight back out again. It doesnt stay in the body long enough to concentrate, my sons wee is clear and odorless.

I was also told by my sons paediatrician to reduce his fluid intake, this was before my sons diagnosis. Its something that you just cant do with someone if they have DI, because of dehydration.

I do hope you get some answers soon and start to feel better

Thank you all for replying. Well firstly i have just been to see the endo today for the results of the cortisol result- suprise it was normal according to him (result 20.5 after over an hour of stabbing me with needles) therefore there is no need to try a stim tests again, or do atch or any other hormones.
With regard to being unable to cannulate me they were using peadiatric cannulas and had my hands and feet warmed in hot water but they soon go cold again.
They said that a stim test would be done as a last resort to rule out addisons (symptoms weakness, faintness, hypoglycaemia, cant exercise otherwise i collapse, cold, nauseaus especially in the morning) and now they have got that one random cortisol they are saying that that is as usefull as the stim test to rule it out. Anyway endo has said to keep doing normal things and to try and put more weight on (i am on 3000 calories a day anyway and since december have lost 7lb)
With regard to my frequent urination thirst etc, the endo did a prolonged water dep test i finally managed to just about concentrate my urine after 20hours fasting, therefore when i drink i am constantly going to the loo. Endo therefore ruled out diabetes insipidus from that and said to reduce my fluid intake but since ive done that i feel dreadful (dry mouth and tongue is cracking/sore, lightheaded, and of course thirsty)
I just dont know where or what to do I guess all i can do is wait! What do you think? thanks

Man, your endo is BLIND. He is going by the numbers and not looking at you which means he has his head up his um yeah.
That being said, you may be bad enough to have symptoms but not quite bad enough to reach the outer limits of a lab range.
I had a friend that was borderline DI and it was miserable... she did about 4 water deprivation tests and the lab messed them up as well as them being torture. All her tests came out "normal" but she still has issues. 20 hours is not normal.
Can you get to a more competent doctor? One who is not looking at the world through his belly button?

Thanks for replying rumpled. Well after moaning to the endo about my not improving symptoms he huffed and said i could see the other endo next door to whichi did. Anyway he seems to be going along the same lines as the other one- basically saying that the water dep test was normal as i concentrated after 20 hours and to reduce my fluid intake (labs for the test showed a high plasma osmolarity, and low urine osmolarity after fasting but i wasnt given the injection) and also says that the random cortisol of 20.5 after extreem stress is equivelant to having the stim test thus i produced an adequate responce plus atch is nothing to do with my symptoms. So im at a loss - like they keep saying the tests are 'normal' so i start doubting myself by thinking maybe it is in my head, but then i try and walk into town not far and feel like im going to collapse and that makes me see relity. The endos dont see me when im at my worst which also makes it hard. It seems like most have trouble being diagnosed.

Well, as he sees it, under stress, you were able to produce cortisol and so that is that even if the test was imperfect.
However, what is not shown is how it rose, how fast and how you reacted under controlled circumstances as well as your ACTH.

I have to say though... those with DI cannot reduce their water intake or it can be dangerous. The body is telling you to do it for a reason.

And having had a cyclical form of Cushing's that took 12 years to diagnose (I was certainly sick far longer but my tumor was found 12 years before I was treated finally), doctors certainly do not believe symptoms and issues come and go and tests can be normal and abnormal and yet you can be very sick.

Don't go to an endo next door - do some research with some associations that specialize with addison's and find someone who will test you properly.

Thanks for replying, I have done some research and found that low cortisol can cause urine to concentrate hense taking 20 hours to concentrate, thus could still be diabetes insipidus masked my low cortisol. Thing is would asking gp for low dose vasopressin to see if that fixed DI symptoms make it harder to pinpoint ? cortisol?
I am concerned about asking for them to repeat random cortisol as they have been 'normal' apartform the last one which i have doubs about ist accuracy (if it doubled then it would have been alot lower than my others-at 281, or within range eg 500's maybe and not have doubled either way we dont know). And endo has said that we physically cant do the stim test as they cant cannulate or able to get the bloods off me-dehydration. What would you do as he is saying that this last cortisol constitutes a stim test? I just dont want to push them too hard as its taken 4 years to get this far and i have tried to sort of direct him but that just puts his back up and holds things up. Thanks.

Why are you staying with this endo? The way I see it, stay and stay with how you are. Move on with copies of your tests, and try to get another doc to see if he/she sees the tests an differently.
You are right, no doctor likes to be directed. But if that leaves you in poor condition - what are your choices now?
It is such a shame that you have such difficulties with your veins...

Thanks, this is my second opinion, mind you i only got offered him because the first endo said i could see him as he'really doesnt have a clue'-his own words. But it was awkward because the second opinion is next door to this one and the first one keeps comming in and butting in whilst this second one is looking at my results-thus the second one comes out with more or less what the first one says. There have been so many mistakes with labs and accuracy of the tests that i have no faith in their meaning now. How would i go about looking for another endo (these two that ive seen arnt specialist in addisons/hypopit etc but are only specialists in diabetes)? Wouldnt it look bad (like im making a fuss) that ive already seen 2 that have virtually said they cant see anything come back in 3 years! please post back, thanks

I would look for a neuro-endocrine specialist. Find a university center and/or look at the organizations around that support addison's and get some names (some will not give names but how to get them) and or centers that do treat this more effectively - or at least difficult cases more effectively. While it is not your everyday disease, it is not so rare that there are not others out there with it so search them out. The restrictions on the board make it so that you cannot really list other sources but they are there.