Adrenal Insufficiency Support Group

I was referred to an endo primarily for galactorrhea last July. I had lots of other symptoms as well: fatigue, weakness, weight loss, loss of appetite, loss of libido, hypoglycaemia, acne, rashes, headaches/migraines, brain fog/memory loss, severe agitation, irritability and intolerance to stress, nausea, vomiting, diarrhea plus others.

I saw the endo in October 2010 and had some blood tests. All were normal with the exception of my blood glucose and cortisol. I was told cortisol was borderline low. I waited for more tests. Whilst waiting I became very ill, I had to come home from work because the level of agitation reached such a point I could've hurt someone and I lost my memory. After this, I suffered a collapse and couldn't get up for days. My blood pressure fluctuated as did my blood glucose. I had diarrhea, nausea and bad back pain. I rested for weeks and slowly recovered.

I had more tests and was told my cortisol was low. I had an ACTH test and have today received these results:

basal cortisol 261

30 minutes 647

60 minutes 845

Endo states "thus excluding cortisol deficiency". She goes on to say "This test was arranged as her previous 9am cortisol was low however the recent short synacthen test is normal".

I do not know if my ACTH level was tested.

Ok. I don't have Addisons or primary adrenal insufficiency but I have suffered with all the symptoms of low cortisol and been back and forth to my GP for months now with this, in fact now 2 years.

Can this be secondary AI or am I actually mad and there is nothing wrong with me???

Please help

To convert to America numbers, divide by 27.59. By that standard you peaked at about 30.

While it doesn't look like primary, it doesn't completely rule out secondary. Stim test is a Blunt instrument for secondary ; it only shows up after secondary has gone on

long enough to atrophy your adrenals.

Have you had your acth level checked?

My symptoms were so severe last November but I have slowly recovered since then and am better (good days and bad days). My cortisol level has declined as well since my first test.

I know the numbers aren't super low and could be considered within range in some countries, they were low enough for my endo to order the tests and it worries me that I have had such horrendous symptoms.

Where next? Push for ACTH level testing? Order hydrocortisone online and self medicate?

I will do anything to feel better and get back to work.

I think I might shed a little light on this for you. I am secondary adrenal insufficient, caused by a cyst on my pituitary gland. No one knows how long I have had this, but I first had symptoms after the birth of my first child in the late 70's and a couple of years later I accidentally discovered that I had what was termed back then as an "enlarged sella tursica" after a fall in a bathroom required a head x-ray. Docs then told me it was no different than being born with a large nose, but obviously something was going on even then. Still, I didn't think about it much. Symptoms came and left just as rapidly. I would have weeks where I'd be extremely fatigued, and I did find that I was hypoglycemic (which was also tested during that time period). Other than watching my sugar intake and trying to get enough protein, I lived a fairly normal life.

That changed for the worse after a bad delivery experience when I had my third child in mid-80's. I had multiple problems with that pregnancy that I now know shows the pituitary was deteriorating - heart arrythmias, outrageous fatigue for starters. But after delivery my bp went to nothing and they had to fight to get blood to my heart. I now believe this was somewhat similar to a Sheehan's response in me, but whatever the situation the outcome was that my pituitary/hormonal symptoms got much, much worse. Still, though I was having symptoms for many years (from the 80's through till two years ago) I chased a diagnosis that never seemed to come. I believe that is because when the pituitary loses its ability to regulate/put out hormones, it is not lost all at once. Someone on this site once described it as a dying star - it spits and sputters, fading and improving, over time. So test results are going to be sporadic in showing up a problem. So many of us "hypopit" patients are often told their results are "borderline low but normal." What is not normal is the symptoms all of us share - unrelenting fatigue; muscle aches/cramps; heart arrythmia and other cardiac irregularities like blood pressure; hypoglycemia with its weakness, dizziness, shaking; foggy thinking; visual disturbances; intolerance to cold/heat; and many others. Many of these symptoms are caused by adrenal insufficiency and many are the interplay of all the pit hormones from LH/FSH, ACTH, TSH, growth hormone, etc. Pituitary cysts and tumors can also be what is termed "functional," in that they can produce hormones in excess (your galactorrhea for ex.).

Please continue to push for testing - you should also have an MRI of your pituitary to rule out a cyst or tumor. It is not unusual that members on this board have reported having to go through multiple endocrinologists/doctors to finally find one who makes a correct diagnosis. The condition is rare and listed as an orphan disease (sorry Waytoohandsome, I know you don't like it when I say this) and so many doctors may not even see one case in their lifetime. You will have to educate yourself about the condition and may have to be armed with information in the way of medical studies, etc., in order to make a case for yourself.

The good news - is that if your tumor is not growing (mine is not) you have time to get this diagnosis because it is rare for a secondary adrenal insufficient patient to go into crisis from the adrenals, though it sometimes happens if the adrenals completely atrophy. Mine have not, and I still continue to put out aldosterone and adrenalin from my adrenals. If you have any questions, we are here for you. Good luck!

Deb

Thanks for your reply.

I have had an octreotide scan which, although I am not clear on this, was looking for tumours and came back negative. There was no areas of unusual uptake is how my endo put it.

I still have galactorrhea and all the symptoms of AI. I have also suffered hairloss/thinning, particularly at the front of my head.

Could this be a hypothalmus problem?

I just need to get back to work!! I am so desperate to get back to work.

Deb

Post edited by: ITeach91, at: 01/12/2011 09:10 AM

My symptoms really started when I had my son, 4 almost 5 years ago. I too had an horrendous pregnancy with many illnesses and scares throughout and this ended with him being born 2 months prematurely by caesarean section.

Can I ask what your blood results were when you were seeking a diagnosis?

All I have so far is this and my cortisol levels from the ACTH test:

glucose borderline raised at 6.6, previous glucose normal at 5.5 on 23 June 2009, FBC normal, U&Es normal, LFTs normal, corrected calcium normal, eGFR >90 (bilirubin 24), haematinics normal, TFTs normal, prolactin normal, LH 8.6, FSH 4.8, oestradiol 992, androgens normal, IgF1 normal

My cortisol was at first borderline low and has decreased since October and is now considered low.

I don't know if my other hormone tests are normal such as LH and FSH or oestradiol or whether they have anything to do with anything at all.

Got your PM. It seems you got just about all the info that you can use!

The cosyntropen test has ruled out primary. It hasnt ruled out secondary. In fact yours is the first test where I have seen what they call "sluggish". ie the 30 and 60 minute figures being markedly different. I dont actually have handle of how to read that into the numbers but that is actually a trait of secondary. They also use the initial number (261) like a AM cortisol test. Of course this is subject to a needle stress reaction so it being in range isnt such a surprise.

ACTH testing might be usable if you get it concurrent with another cortisol. (there is no point getting it by itself) Indications of secondary are of both low but if your doctor is a "normal" believer it may not sway things.

Self medicating? This is a reasonably big step. Once you start taking it you cant stop. There is no latitude for error. You WILL cause a much greater crisis than what you are currently getting if you fail to dose. You have to ensure your supply is good. You also have to consider the effects on the rest of your endocrine system. Taking HC WILL reduce ACTH so you may get into water balance and androgen (sex hormones) territory. It will be hard to make self medicating decisions about progesterone etc as well.

I think you have to apply "inescapable logic" to situations where you have gross symptoms. You say to the doc "okay its in normal range, what medical problems can be the cause of my symptoms?" If you are really feeling horrible you can ask if your docs body will work well with cortisol anywhere within normal range. Diagnosis in this case is not finite but an odds thing. ie it is "likely" or "unlikely" . You have to be able to quote hard facts like "unable to work" and "can only walk/stand for 2 hours s day" as well. ie be quantitative.

But this is all theorizing and what is your next step? I get the impression that your endo hasnt completely washed her hands of you yet. Are you going back to discuss secondary issues?

Bob

My endo says I am not in range, my cortisol was "borderline low" in October and this has now come down quite considerably and is low. Here in the UK I think by "excluding cortisol deficiency" she means ruling out Addisons.

Have you ever heard of galactorrhea with low cortisol? This, along with the profuse sweating, acne, loss of appetite etc, was one of my first symptoms and also the one that forced a referral from my GP. I still have galactorrhea and a number of other symptoms.