Adrenal Insufficiency Support Group

Tuesday I will be going to see my Dr...sort of (hes on vacation but new person there). It will be my first visit in 6 months (wont see me more often) unless you count the 3 minutes in my hospital room several months ago. Im tired of not getting any answers from him so Im going in with a plan!

I want to find out the results of the test he did almost 3 yrs ago when he said I have A.I. I want to know why hes choosen Cortisone for me to take and this is all. It causes a ton of problems with my diabetes (type 1) which doesnt concern him at all.

What Id like people to weigh in on and help me with is this: What questions should I ask? (BTW asking to many can get you thrown out) I dont know if this guy has a clue and Im missing it or if I need to look elsewhere and the answers I get will determine that.

So what questions will be most helpful, in your opinion, for me to get answers to?

(OH I hope someone has ideas!!!!)

I'm newly diagnosed and out of control so I will leave expert advice to others, esp. Bob.

HOWEVER, I always ask for copies of my lab work and imaging studies and keep them in a folder with medical records. Always good to refer to or hand-carry to other doctors or ER.

Good luck.

I agree with DragginLady, the tests belong to you and you have a right to a copy of the results. When you have this condition, keeping a medical log is crucial. With diabetes complication, even moreso, you should be keeping a record of your sugar levels and correlate that with your symptoms.

It is essential to learn to read your body when you have AI. You need to understand what happens when you are low-cortisol, and what happens when you have too much. This is tricky and will take some time but begin paying attention NOW> I'd say it took me close to a year before I felt like I really knew what was going on. I'm very comfortable with that now and can even tell the difference between those symptoms that (very frustratingly) are somewhat the same when you are high and low - both conditions make you fatigued, but I can tell the difference in the fatigue. The high fatigue is more of a burnt-out feeling, the low just a plain exhaustion.

If you are on an optimal dose of the cortisol replacement (not too little and not too much) you should not notice a difference in your diabetes. Of course, I'm not speaking from experience here but what I've been told is that if you match the dosage correctly to what your body needs it is no different than if your adrenal system was working naturally. Of course I do know that anyone under stress shows a difference in diabetic symptoms...how has your blood pressure been? Do you have any bloating? Any other symptoms? If you are at the right dose, you may find you need to spread it out over the day and not give yourself a big wallop all at once. This will help stabilize.

AI affects the way the body responds to glucose. It is actually common to have hypoglycemia with the condition, which is my problem.

Deb

I have asked for my labs and the papers show my A1C, cholesterol and blood pressure. Sometimes it shows my vitamin D level. nothing more.

I can tell when Im about to get sick now but really havent been able to figure out how to stop it from happening...at least not completely. But when I go down my blood sugars drop into the low 30's if Im not sick its a struggle to keep it below 200.

My blood pressure has been great (unless Im down lol) but bloating.....I went up 65 lbs in 6 weeks and no matter what I do or eat it just keepss going up. I also have that beautiful round moon face now.

I just feel like the dr. may not care or know what to do because he is always telling me to go on a diet or "I dont know"

I'm not a medical doctor, but your symptoms (especially the rapid weight gain and round moon face) are those of Cushings - overload of cortisol. It is essential that you find a doctor who is willing to look at this, because Cushings is as dangerous as adrenal insufficiency, two opposites of the same spectrum but both very dangerous. If you are not satisfied or this doctor will not listen to you, please try to get a second opinion. Many of us have had to go to three or four doctors to find one who is willing and able to listen and respond to us. Someone on here once said "50% of all doctors were in the bottom half of their class."

this is your life - become your own fierce warrior and don't settle for less than respect, intelligent treatment and concern.

Deb

By the way, what is your dosage of cortisol at present?

deb

Try this for a description of things. Some of it I am sure about and some is logical speculation. I invite argument.

There are two main mechanisms that keep blood glucose "up", Cortisol is actually more the "stress" one but there is a quiescent level that seems important enough that if it is missing you crash badly. Keep in mind the diurnal cortisol curve shape.

Insulin clamps blood glucose to maximum level or if you like, "down". The idea is to have an as level or flat "curve" as you can get. Insulin takes extra glucose and converts it to storage.

Logically it then follows that as cortisol falls so does secretion of (or need of) insulin. If you find yourself in an adrenal crash for example it probably isnt wise to take insulin as you are already BG low.

I would also suggest that if your cortisol dosage levels are within a reasonable optimum, insulin has a far more potent effect in regulating BG. I also speculate that since our cortisol, curves are not "natural", BG in the face of manual insulin control needs more frequent measurement. I think that establishing a dynamic baseline idea of what your body does is important if you have both AI and diabetes. You also need to do a much better job of regulating your cortisol curve than those of us that dont have diabetes. No that isnt easy.

I would think that Pred is better for a diabetic than HC simply because the curve isnt as peaky. I have no data on that, it just looks logically right to me. You would of course have to check/control your water balance if the change was made.

Too much cortisol will of course negate insulin (resistance). I've been there! Excess stress dosing using a short term steroid like HC invites some high BG values.. In a way too much cortisol is the "same" as too little insulin. We are of course only talking BG here. Other systems also need to be considered. What do you do when stress dosing HC as a diabetic? You actually want the BG to rise slightly because that is a normal thing. How much is enough? Time to do some research!

Of course this isnt the whole picture.

My suggestion is to walk in there with a researched knowledge of how the BG system works as far as cortisol and insulin input is concerned. Make a flowchart outlining your "gaps" of knowledge (lie about what you dont know!) and then ask the doctor to explain the flows to you. If he can do that and show levels and response, hang on to that doc for life, if he cant, get rid of him/her.

Bob

I take 25 mg cortisone in the am and half a tablet at night. A while ago the dr did do a 24 hr urine test and said it was too much and wanted me to take only half a tablet in the am but after one day I was sick and everytime I tried to cut back I crashed. He also told me that a person naturally needs less at night but I have NEVER gotten sick before 8pm.

So you are now on 12.5/12.5? And your doctor recommended that? Ouch! Thats a huge one time drop. No wonder you felt bad.

Cortisone has the same basic halflife etc of HC but you need about 20% more in terms of equivalence. The 37.5 you were taking was probably excessive in the strict weight/dose calc. Care to tell me your weight and height?

Do you want to break into 3 doses. ie do you care what your doc says?

UM

If you are going to visit a NG how about this as a suggestion to him/her after you've told him symptoms.

Start at 35mg total and drop by 5mg every 5 days

Break into 3 doses/day. before breaky or in bed, with/after lunch and with 5PM food (supper if you have it then)

Proportions of dose close to 1/2, 1/3 and 1/6 total (Obviously pill size will make for some latitude)

Just before every 5 day drop, take stock of your body. If it is super fatigued DONT drop for another 5 days. If it never gets better go up 2.5mg. Thats your dose.

You may need to do some further timing/size tunings. It took me about 3 months to get it right.

Bob

I agree with Bob, you need to figure out your dosings and you have to be very patient in that process. It is crucial to get off the higher dosages, this can cause everything from high bp to high blood sugar to weak bones to vision impairment...but as Bob said, you can't do this too quickly - you must gently back yourself down. The doc's suggestion to cut it in half in the am was a bad one - too severe a drop and you also need your largest dose to be in the am as Bob said.

Three times a day works well for those on HC, in the proportions Bob recommends. I am on prednisone, so I take twice a day 2/3 in the am (it lasts 12 hours) and 1/3 in pm.

Deb