Adrenal Insufficiency Support Group

Becky & Debs, do you have any papers? Might be handy to article or sticky them as its a common "complaint" nowadays.

Interestingly my PCP/GP is quite happy to go down the endocrine path. I see him more often than my endo and he's always a voracious learner. He also lectures medicine at the local uni! I am surprised at the toe stepping remark. The more opinions and data the more accurate the results!

Bob

Now, this is NOT the same ITT that you do when you are pregnant. In this test, they give you insulin and drop your glucose to a very low level to stress your body. In a healthy, normal body, the ACTH rises and causes the cortisol levels and growth hormone levels to rise in response to the stress and to cause the liver to make and release glucose. They measure the cortisol levels during this, not ACTH (they fluctuate too fast) but the rise in cortisol, or lack there of, shows if ACTH is being released and stimulating the adrenals to release cortisol. (Note, that the adrenals have there own level that they will just make and contribute to the blood levels. Obviously a different # for everyone. However, they are unable to increase this amount without the help of ACTH in any stressful situation. )

So - the ACTH stim test, tests the adrenals ability to respond to ACTH. The ITT tests the pituitary's ability to respond to stress and to release ACTH and GH so the adrenals and liver and do their thing. You may have gas in the car, but if you don't have a battery and alternator, you aren't going to get far! Does this all make sense or is it clear as mud?

I am really new to this web site and to hypopituitaryism. I have been reading everyone's stories to learn more about my condition. I felt really compelled to reply to your situation because it has hit home with me.

I complained of fatigue for years with my family doctor, I had all the signs of thyroid dysfunction (no eyebrows, cold, low body temp in morning, dry skin and hair, etc.) my blood test all came out in the normal range. Last year during my physical he noticed an elevated prolactin level. It was not that high, it was 5 point above normal. He referred me to an endo who in turn ordered a MRI and more blood test. The blood test all showed normal except for prolactin. My MRI showed a very large mass in my pituitary. In accordance with their charts with my prolactin levels, my tumor should have been a micro tumor. I was referred to Stanford University Hospital, neuro center and met with their team of doctors. The first thing the endo said to me was that my tumor was throwing false readings in my blood test. He immediately started me on HC and thyroid meds.

Long story short, your husband is right you can show normal results and be sick. Don't give up. I don't know your location or your insurance situation, but if it is at all possible, you should try to get to a medical university or research facility where they are willing to look outside and inside the box. They usually have more experience with and treat more patients with your conditions.

I wish you the best of luck,

Sonya

It's been a while since I've posted. Some of you may remember that I have a recurring pituitary macroadenoma, now back for the third time. Although I have been on cortisol and sex hormone replacement in the past, I am currently only on DDAVP (vasopressin)- replacement ADH for Diabetes Insipidus.

I have had chronic sleep fracture since the onset of my pituitary disease, so I wake several times a night. I also lost my libido, have low energy, exercise intolerance, and temperature disregulation.

In the past few years I have become increasingly more fatigued and I no longer work or volunteer in my community, although I used to be quite active. Heck, I used to give presentations and performances in front of hundreds of people. But I started to be pretty foggy brained and I lose words or thoughts sometimes -- it was starting to get embarassing so I dropped of the volunteer boards I served on and stopped doing presentations and quit performing for fun.

I find it takes so much energy to be out in the world that I no longer go out much at all. When I do much physical activity I require so much recovery time it just doesn't seem worth it.

The endo I am currently seeing does not believe that I need replacement therapies for hypopituitarism. I sought help from my gyn/woman's health clinic who suggested thyroid replacement, sex hormone replacement, and over the counter adrenal support since they do not prescribe hydrocortisone.

I also went to my PCP who advocated for me with the endocrinologist and got him to agree to me going back on adrenal support (Cortef), but when I went to see him in person he had changed his mind and reneged on the Cortef prescription. He advised me not to begin ANY hormone replacement and referred me to a colleague doing research with testosterone replacement in pituitary patients.

Well, when they scheduled me in it ended up being an appointment not with that doc but with an intern in the clinic. I didn't feel that was really the way to go, so I waited until I could get in to see a more experienced doctor.

I will be going to the neuro-endo clinic at Mass General next week for a consultation. I'm not really expecting much as I have seen MANY endocrinologist over the course of my disease and very FEW who have truly been able to help those with hypopituitarism regain vitality and quality of life.

I have read some of the research out of this clinic and suspect that my lab values will not spark much interest in treatment, so I am not getting my hopes up too much. To be honest, I was fairly devastated over my experience with my primary endocrinologist over the past couple of years and it's made me pretty pessimistic about my situation overall.

My last pituitary surgery was done at Mass General and it was so superior to my first pituitary surgery, I will (happily) go back there to get the tumor removed again. That part of the Neuroendocrine Clinic there I have no reservations about. It's the ongoing care, the replacement and balancing that I've never been able to get worked out all these years.

Anyway, sorry this turned out to be so long-winded. I am trying to psych myself up for this appointment next week. It's just REALLY hard to keep going to these doctors who leave you feeling like you're nuts, you know?

I welcome any suggestions folks might have in preparing for the appointment... anything from how to present myself and my history to questions I should ask to any supporting research I could present that might help.

Thanks in advance,

Alessandra

I try to type up 2 sets of questions I want answers for. One set for the doctor and one set for me because when I get in with a new doctor i'm often stressed and can't remember all the questions I want to know. I ask the doctor to go through the questions one by one and sometimes I jot down answers on my sheet of paper.

I know how frustrating doctors can be.....bad experience yesterday....just remember that they are people too and often don't know the answers.

Good luck with your appointment.

~hug~

Post edited by: CanadianCat41, at: 05/08/2012 09:58 AM

I recently came across some notes I made for an endo appointment 12 years ago... same issues back then: fractured sleep, no libido, temperature dysregulation, low mood. I wasn't reporting such debilitating fatigue then though, or inability to do physical exercise without crashing. But then, I was on Cortef back then.

I think I would feel better if I could do some yoga, qi gong, resistance work, but I had to give all that up about a year ago. It was just wiping me out.

Thanks again for you response.

~A

I haven't been on group for a long time and am now seeing your post. Your case is really interesting. Elevated prolactin has always been part of my constellation of pituitary dysfunction and seems to be a fair predictor of how large the tumor is getting. My old endo tracked this with interest, new endo not so much interested.

I told my husband what you said regarding the tumor throwing false lab readings... very interesting. If we were on the west coast we would definitely be heading to Stanford for a consult.

I hope that you are having success getting your replacement hormones balanced.

Thanks for reaching out to me,

~Alessandra