Results from endo

[galliar]

Hello,

Today I finally had my endo appointment.  She said I have primary adrenal Insufficiency.  She offered to put me on 25mg HC / day, but wanted me to try the lowest dose possible, starting at 20mg, only if I was willing to.  She also prescribed .05mg Florinef.  I explained to her that many days by 4:00pm I am exhausted and not feeling real good.  She said to try a higher does at this time, and maybe somewhat less in the morning.  I was given Solucortef as a 100mg inject-able for times of crisis.  Her concern in diagnosing me was that I didn't have any original records from the past, and I had been on HC for 15 years.  Anyway, she seemed to be understanding.  She also ordered a bone density scan that my wife wanted me to have.  As for DHEA, and DHEAs testing, I didn't ask yet.  I figured that could be left for the future.  Strangely, she didn't think 4.3 for a renin level was high.  Most interpretations I have read top out at 3.8.  ACTH was 52, which did exceed the top of her ranges.  I had a test earlier in the year that nobody ever show me the results of:

Cortisol level <1
ACTH < 1

She said that this test was probably not a good test since it appeared I must have been overmedicated at the time.

I do have one question from anybody who uses the injections.  How long should the needle be, and where is the best place to inject it?  Is it painful (although during the times I would need it, the pain would be much less that what I experience)?

[Idaho Dusty]

Randy,

It's great you finally got a diagnosis!

I am wondering if you've had an MRI of your pituitary.  Your ACTH is quite high for someone who has been on steroids for 15 years.  You might want to ask for a full pituitary panel.  You really need to get DHEA-S tested and testosterone.  Both hormones are widely ignored but integral to feeling well with Addison's.  Especially important if you've been deficient for 15 or 20 years!  No amount of adjustment of HC will make a difference in how you feel if you're missing integral hormones.

How to give an emergency injection  Excellent instructions! I keep it with my injection form.  The shot didn't hurt when I did it.

Emergency Information Form

:)  Dusty

[Wanda]

Randy,

We should have 2/3 of our daily dose by noon or 1pm.  A 20mg dose would be split 10mg am, 5mg about 11am & 5 at 3 or 4pm.  Hope you can get yout testing done quickly so you can feel better.  

Take care,
Wanda

[Joel]

Randy,

I agree with what Dusty said.
If it was me I would start at 25mg and once I felt normal then try gradually reducing your dose.
Starting at 20mg is inviting fatigue and other symptoms, but its your decision.
Also the normal dose for florinef is 0.1mg so I would ask to have your sodium and potassium checked after a while and if your sodium is still low then you probably need 0.1mg.
Let us know how you feel after you have been on the new regimen for a while.

Joel

[galliar]

Hi Dusty,

I am planning on getting the tests you mentioned very soon.  I do remeber getting an MRI in the past, but like you say, it might be worth doing it again.

Thank you for all the great help.

[galliar]

Hi Joel,

I am using 25mg for at least a week or so.  The endo was not set on having me go down anyway.  She said 25mg would be fine, she would even prescribe more than 25mg for any extra that is needed when I am sick or under stress.

I hope this isn't some kind of placebo effect, but something is making me fell much better.  The only change is florinef.  Does it actully work this well?  It has only been two days, but I feel better than I have felt in a long time.  I am praying this lasts since it is such a short time.

Thank you for all your help.

[Amy]

Randy,
you will be amazed how when you have your drug timing/dosage right it makes an enormous difference.  I have found, too, that over my 15 plus years with this disease, you will have to readjust occasionally, and it takes several weeks to tell if the change you made really works.  You will start to fine tune your perceptions about what your body needs. Be thankful for the days you are feeling good.   I was instructed to give the shot in my thigh.  I think it hurts (big wimp), but I have recently acquired a "shot blocker" which is very cool and works wonders when I get the flu shot. An excellent pharmacist showed it to me...I swear, even when you get a shot, it does not hurt as much...I am needlephobic after all those blood tests when I was undiagnosed and dehydrated.  Ask a nurse for instruction in your doc's office to let you practice with saline, and it will be way less problematic.  Hopefully, you won't have to use the injection kit..here's to good health!
Amy

[galliar]

Hi Amy,

You are right, the dosages seem to make a difference.  The florinef, now on the third day still is making me feel excellent.  I also am taking Cortisone at morning - 10mg,Noon-5mg, and 5pm - 6pm 10mg and this seems to be a good mix.  Thanks for the help.