Adrenal Insufficiency Support Group

Since we do not have a diagnosis and I am trying to figure this all out, I was thinking, my son has some decent days (he still cannot play his saxophone, run, play or use alot of energy) and he has horrible days and he has everything in between - is that typical of prior to diagnosis?

I just wanted to know if it is an all or nothing scenario (if you have it you are in horrible condition all the time or you don't have it).

Today, for example, is a decent day - he still has dark, thick lines coming from the corners of his eyes but he is not just laying there or suffering from unexplained hypoglycemia and terrible, horrible back pain. He always has back pain but it is far worse on certain days.

Yes

Think in terms of supply, demand and resource levels. There will be an optimum point that he is well below and a minimum point he is undulating around. ie above and below. There is also some inertia between cortisol levels and symptoms. ie you can be low cortisol and not be symptomatic for (pick a time) x hours later. When he has any life physical or emotional stress it draws down on resources so some time later he is symptomatic. When he rests, his degraded system still produces a tiny bit more than is needed so he feels better again, till next time!

This is all normal. You also get these undulations when under treatment although not usually as bad.

Left untreated of course eventually you stay below the line as the system fails more. You then end up resting sleeping all the time.

Dark pigment lines are probably not going to change that quickly.

Unfortunately even with treatment there are good days and bad, but they usually are not as extreme. Also, dosing adjustments can help.

I was pretty much bed-ridden by the time they started treatment, but I could go do something (like see my daughter's Christmas play) - as long as I planned on three days in bed before and three days after.

The other tough thing is most of the time we don't "look" sick. When I went to her play, for example, other than looking tired, I appeared normal. It is very difficult for others to grasp the seriousness of the illness because of that.

I do hope you find out something soon.

Cynthia

thanks bob and cynthia - I really appreciate the info....

still hoping someone (when you get a chance) can help me with a response the the nurse practitioner - he said that if my son responded with cortisol to needle anxiety, he will have more than enough cortisol if a severe stressor should occur. He said he is not in adrenal crisis and an appointment at CMH is over one month out.

Do you feel that is acceptable? Also, how would you respond about that statement?

I honestly don't know. I think it would depend on how much he responds! If his baseline is 1 and it "jumps" to 2, that isn't remotely enough! So, that's a pretty broad statement to make.

Also, adrenal crisis can be a sudden thing, like with an injury or severe illness, or it can be something you can go into slowly...I spent three weeks getting to that point when I was switched from prednisone to HC. The main things to watch for are mental cognition (what is your name, where are you, who is the president, etc.) and basic functionality. If at any point he loses that, go to the ER. Screw the nurse practitioner.

Hopefully Bob can give you a better, more insightful, intelligent answer!

Cynthia

Nup no more intelligence from me today!

Judging by the comments made I think the NP is a total loss and should be removed from the communication loop. I realise that doesn't help much, but anyone in a service industry that doesn't respond to pain and suffering isnt worth dealing with.

Thank you Little Miss Mary and Bob. I am up late (3:30a.m.) trying to wrap my brain around how to proceed. I guess I can see, now, if there is any pediatric endo willing to listen to me. I am certain that from the onset, they will have alot of doubt about what causes me to go away from CMH... pretty much the most highly regarded pediatric medical institution in the Chicago area.

Thanks all... any advise about how to approach a prospective endo's office (once I find one) would be appreciated.

HJW, from my research on pituitary problems (if this is pituitary related), during the un-treated time, there are variances all over. A few good days to basically sick in bed all day. That is sort of the nature of hypo-pituitary imbalance....

Is it possible for you to find a really good internist? The one I have now also sees children, and I know she would run the tests in a heartbeat if she suspected a problem. In fact, once my daughter is older, I plan for her to see this doc as well. My husband's family has endocrine problems as well, so I figure it's only a matter of time. I want this extremely smart doc looking out for my kid (not that her pediatrician isn't a smart guy, but...)

Some people never get to an endo, although I don't necessarily recommend that. But an internist would be much easier to get in to see.

Thanks Radio and LMMS -

We now have an endo that has eagerly agreed to see my son. He has requested the records. I filled out the forms and am not sure how long to allow to get the records (how long does that usually take?).

He has come highly recommended and I am thrilled....