Addison Disease Support Group

My Wife has just been diagnoses with having Addisons 2 days ago , she has started ón 30mg HC a Day . When should she start to feel better? She has constant stomache and back pain and has no energy.

What are your experinces with this ?

Thanks for your help .Jonathan

Post edited by: Jonty, at: 06/13/2012 01:37 PM

Hi Jonathan

In my experience, within hours. There are of course some body systems that will take longer (maybe months to a year) and dose tuning (timing and size) will also be needed. Other parts of the adrenal system will also need examining after the gluco-corticoid side is established. She may need to start taking florinef and maybe DHEA/Estrogen as well. This will all take a while to refine.

Cheers Bob (Australia)

Thanks Bob ,

We Will have to give it a little time and see what happens, we just could not understand why it hadnt helped yet .

Cheers Jonathan (Denmark )

When I first started HC the dose was too large and I felt extrememly weak and nauseous. Maybe she needs to start off on a lower dose and see how it goes - but she shouldn't drop down quickly as that can cause a crisis - it's somthing she should discuss with her endo though.

Thank you for your reply. we were actually wondering if the dose was too low........? Did read somewhere that when starting taking HC the lilltle function thats left of the adrenal gland will stop to work, so that in the beginning one might need more, and then eventually you can decrease the dose. But we are very confused, - my wife actually feels weak and nauseous. We will try to get in contact with the hospital.

My wifes synachten test started at 91nmol/l and after 30 mins it was 372nmol/l . Is this a clear sign of addisons or just border Line ?

What were your results ?

Thanks for your help

Jonathan

Hi Jonathan

It implies secondary (pituitary) based as the adrenal gland response was adequate. The definition of "Addisons" varies, but more often is used to describe primary (adrenal gland) based. We also don't know what kind of stim test it was. Low vs high dose has different interpretations.

It gets confusing. On MDJ here we usually use the terms PAI, SAI and TAI. (ie primary, secondary or tertiary adrenocortical insufficieny)

Mine was around 35 to 580nmol/L back in 2005.

I wonder, did your wife have a child in the last 12 months? Women can get AI type states from births that don't go well.

Bob

Hi Bob , thanks for your answer .

In the mean time my Wifes symptoms have not changed after having a week ón cortisol , she has been to the hospital this weekend and had a higher dosis iv given . This did not help But they want her to carry ón with 30mg a Day until they have some other blood test results.

A second doctor at the hospital was not sure that the test results indicated AI so they are also going to repeat the stim test , how long long before the stim test should she stop taking cortisol , so it does not effect the results ?

We were also wondering if 30mg is to High for her , she weighs 67kg and is 175cm tall . Do you think this is the right dose ?

She has not given birth the last 6 years.

Thanks for being so helpful , we really apreciate it, since we feel a little lost.

Jonathan

Hi Jonathan

The direct effect of HC on the stim test (ie adding to the circulating cortisol) can probably be ignored or at least allowed for at 12-15 hours after previous dose. You are talking 5-10% of the dose remaining. The larger problem is that if you are on HC for long enough there is very little natural adrenal gland action left from "lack of use" and there is no easy formula to figure all that out. It can also be just plain dangerous to withhold HC for too long, just for testing purposes. There are some tricks to getting around that though. Substituting Dex (a more complex gluco-corticoid) for a few weeks is one of these.

Since however your wife has only been on HC a few days I'd expect the 15 hr withholding will be adequate for the next stim.

Well 67kg at 175cm from my University of Sheffield doc states 15mg/day taken as 7.5/5/2.5. That double size dose could be the cause of stomach etc issues, but you also have to allow for the system repairing time. If your wife was on double dose for any longer than 2-3 weeks I'd be concerned. Be wary of changing the dose suddenly though!

Because HC is fast acting too you can make some judgments about dose size etc. Like if she doesn't feel tired and sick before the first days dose, but is afterward, then you have a possible cause and thus proof that a lower dose is needed.

Bob

Thank you for your reply. I'm the wife of jonathan and the reason for his questions above. I thought I would give an update on my contact with various endos.

After approx 10 days on HC a different endo at the hospital told me that if I didn't feel better yet on the HC (20 +10 mg) then I did not have AI and that they would redo the stimtest. I had the results of the second test today on the phone. The nurse told me the stimtest was normal. The values were: 154nmol/l , and after 30 min: 374 nmol/l. I think the test is pretty much like the first test, and I cannot see how she can say the test is normal?

I feel very tired, exhausted and definitely not like the person I used to be!!! My body aches and I feel like I have been run over by a truck.

I am currently waiting for the results of a bloodtest for aldosteron (the first one was 38nmol/l which is too low, but they want to repeat it) and renin.

I am wondering what my next step should be? In your experience does it take time before the HC work and you feel like yourself again, or should I just accept the endos opinion that if it does not work after 10 days then it is not AI?

Any advice or thoughts would be greatly appreciated. .

Thank you

Charlotte