Low ATCH amd Corrisol

[Missi23]

I will try and be as brief as possible, but that will be hard,
I have felt like poo for over 7 years now and every doctor i see just tells me i need an anti depressant, which i have always refused. My symptoms are debilitating fatigue, muscle aches especially my legs, joint stiffness, insomnia then sleeping a lot, hair loss, memory problems, concentration problems, stress causes me to crash meaning i cant get off the couch for days, etc etc etc.

Finally i go to the ER one day with severe abdominal pain. They do a CT and tell me im fine and send me home all hopped up on that awful morphine.

I follow up with my regular doctor, who i just found about 6 months ago and really like, and he tells me i have a cyst on my adrenal gland, but it looks benign and orders some blood tests. The blood tests he ordered were for Lupus markers, RA markers, inflammation, parasites, EBV and CMV.

Everything came back normal except the EBV and the CMV. They were very elevated, but not an active infection or a reactivated infection. He suggested i go to a rheumatologist and that he thought i had chronic fatigue and fibromyalgia. I declined and asked for an endocronolgist. The closest appointment was 4 months out, so i decided to go the Mayo.

I met with the mayo endo and the first thing they did was a fasting blood workup. She said she wanted to check me for Cushings by doing a suppression test. Not sure why cushings as i have no symptoms of that except an 8 pound weight gain in the past 9 months. So, i go do a thyroid ultrasound which showed an 1/3 inch nodule on the left side. I go pick up my kit for 24 hour urine test. I also picked up the prescription for the suppression test to be done on Tuesday night after i finish the urine analysis.

As soon as i got back to my hotel they were calling me telling me do not fill the prescription for the suppression test and to be there at 10 am Tuesday.

I go in on tuesday and they explain that she wants to switch it to a stimulation test and has set up an appointment with a surgeon.

The numbers on the fasting blood draw were

ACTH <5 Normal range 10-60

Cortisol. 4.0. Normal range 7-25

So, i go on Wednesday (not fasting by the way) and do the ACTH stim test.

I pass the acth stim test with a non fasting corrisol baseline of 9.8, went to 20 in 30 minites and 24 in 60

The urine comes back and the ACTH is still low at 8.5. There was no test for cortisol on the urine test, although im not sure why....

I meet with the surgeon who says surgery is not needed because cyct is benign and not over or under secreting.

I meet with the endo a few minutes later and all she says is she wants to retest the ACTH in 3 weeks. Then she starts talking to me about menopause, antidepressants, fibromyalgia, etc etc. at that point my heart sank because here is another doctor, with PROOF this time, that something is amiss and she only wants to dismiss me.

So, i came back home and got my doc to do a pituitary MRI which was "unremarkable". Good news there.

So, heres my question, whats my next step? MRI of the hypothalamus? Or is that a waste of time? Because in my mind this is secondary adrenal insuffiency, or even tertiary, who knows.

But how can a doctor let me walk around with such low cortisol and act like its no big deal? Is it no big deal?

Im thinking of going back to the mayo to do the repeat ACTH test and asking for more tests, perhaps a CRH test or an ITT test? And also meeting with an infectious disease doctor about the EBV and CMV. Perhaps CFS could be causeing the HPA axis disruption? Maybe i have Lymes disease?

There are just so many possibilities, i dont know which way to go with it.

Any help at all would be appreciated

Missy

Edit.... I forgot to mention that over the past 8 months, i am having allergic reactions to many things. Seversl antibiotics i have used in the past now cause me to have severe hives, and i ran a low grade fever for 6 weeks back in July and August, now it is intermittant with the fever.

[Cagedraven]

Endos and MD's have a very bad reputation for those of us with adrenal and thyroid issues. The best thing I did for myself was find a highly rated Naturopathic Dr in my area.

[rumpled]

I get pituitary MRIs done all the time - and while they look at the pituitary and do a special technique call dynamic (where the contrast is injected while you are in the machine and the uptake is recorded), all mine have covered the entire brain as well. I have not had one so focused just on a tiny area - even when I had a special 1mm slice one. I would ask for the CD. And the report. I always look at mine even when I don't have a clue LOL.

BTW smaller lesions (that is just a generic term for any type of doohickey that can show up there) can fall between the 3mm slices, as well as even good radiologists can miss them. Hopefully the surgeon looked even though you did not have surgery.

Your pit can still act funky without a lesion. But it is not typical. There can be other issues going on.  

The hormones all work in loops - the hypothalamus signals the pit who signals the gland and then the pit senses the levels, adjusts and so does the hypothalamus. It is extremely rare to have issues in the hypothalamus - but about 20% of the population have pituitary issues.

So why are they not saying you have secondary AI - and treating you with replacements?

AI is a big deal. I don't have adrenals (removed to treat the Cushing's) and low cortisol is potentially deadly if you get ill. I carry a pharmacy with me just to keep me prepared and adjust as needed. I got a flu shot and my BP has tanked out - so I am having to stress dose now.

[Missi23]

This was back around the first of september at the Mayo.  I was in the lab and watched them do the centrifuge, freezing, etc. etc.  So i know the test was done correctly. This was done at about 8 am.

We did not do a suppression test as my levels were so low, why supress them further

The MRI was focused on the pituitary, but the tech did say that it wwould have to be a rather big adenoma on the hypathalamus to show on this particular MRI, since it was focusing on the pituitary.  

Yes, the 24hour  was for cortisol, Corticotropin, and a lot of other things, but for some reason i got no result back for the cortisol, just the acth and other things.  Not sure why.

So, question is, i guess, even if there is no adenoma, lesion, tumor, whatever you want to call it, on the pit or the hypothalamus, that doesnt necessarily mean they are working properly, does it?  Can other things afect their function, or lack thereof.  

How about long term chronic stress, can that disrupt the axis?

Thanks so much for replying to me.  I really need answers!