It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Addison's Disease Message Board


Addison's Disease Board Index


Thanks for the positive outlook. As for your marathon friend on the internet or another board.. is her name Linda by chance?

If you don't mind me asking, when did you get diagnosed, and how long have you been dealing with it? Those symptoms of chills and sleeping 4-5 hours sounds about right for me if I'm lucky. I seem to have all the symptoms you do.. you are describing things I haven't really thought about (the chilled feeling..today especially I've been having the heater on wrapped up tight in a blanket)

Also, how do I get an absolute diagnosis of adrenal insufficiency? I took the ACTH stim test, he's been monitoring my cortisol, he told me I have adrenal insufficiency.. what else is there?

Chris,

The gal I am talking about is not Linda.

I was diagnosed in 1998 & took a low dose of prednisone for a year hoping my adrenals would wake up. No luck there. I did have antibodies so have NO clue why we went the low dose route. Was not easy either. Doctors!! I had been very ill for a month with what I believe was whooping cough, then given high dose prednisone a couple times for the cough that wouldn't go away. After that I got really sick & ended up in the ER 3 times. Had a young doc the 3rd time who did the ACTH test & gave me cortisol right away. The illness was just too much for my adrenals.

Just make sure your doc has written "adrenal sufficiency" in your file & that you need cortisol treatment for life. Once you have started taking a replacement the cortisol checks are worthless. You go by your symptoms & how you feel. I have never had a cortisol check since the ACTH test. No reason to.

You are in "danger" Chris as you are having crisis symptoms. Make a list of what is going on & get the doc to increase you to at least 20mg. You actually need a script for 30mg daily so you have extra in case you need to stress dose. Just "tell" the doc what you want.

Does your prescription bottle tell you to only take 12.5mg daily? I am amazed at this dose unless he thinks you don't have a life time problem.

Wanda
Thanks for the heads up, I did call him yesterday and he'll be in Tuesday the nurse said so I'll call again with my sypmtoms and everything I need to say. Basically this is what I'm going to tell her.

Before exercise I was feeling semi-normal with some sexual function.
I exercised 20 minutes jogging that night and the next morning the following

symptoms:

diarrhea & nausea

minor chills

bad cough (I have that too! When he took me completely off of cortef 4 months ago to see how if I needed it, I got sick and a throat infection, since then I've had this cough several times a day that almost makes me gag sometimes)

Muscle soreness for the next 4 days(so far) after exercising.

insomnia(got bad after I tried to exercise, before it was pretty decent.. which again points to a sign of low cortef I think).

Sexual function disappeared completely since the morning I woke up after trying to exercise.

-----------------

My doctor also said he wants to try in 6 months to get me off of it again, but I don't know if he's really listening to how I'm responding. Maybe he got the wrong impression when I said I felt pretty okay as long as I didn't have any physical excursion. But with physical activity I go to hell.. I think he ignored that part though. I'll try to be more persistent about raising the dose.

As for the name Linda, I just talked to another runner on another forum was why I thought it was her.. and as for the prednisone.. you were on a high dose of it but still had a crisis? A crisis because you went on a high dose?
Chris,

Have you had an ACTH stimulation test? Sorry if this has already been talked about. So your doc must think your adrenals could work again. If there is a chance your adrenals will function again you don't want to increase by much or for too long. This is very complicated & you really need the ACTH stimulation test. Since you have other autoimmune stuff going on adrenal insufficiency/addisons would not be surprising, but you need to know for sure.

I was tapered off the prednisone twice. After the second taper it was several days later that I got sick. I did blame the prednisone for a long time until the endo finally mentioned he had done an antibody check & it was positive. DUH!!! My father had diabetes & my mother had hypothyroid.

How did your doc take you off the cortef? Tapered or all at once?

Wanda
[QUOTE=WandaB]Chris,

Have you had an ACTH stimulation test? Sorry if this has already been talked about. So your doc must think your adrenals could work again. If there is a chance your adrenals will function again you don't want to increase by much or for too long. This is very complicated & you really need the ACTH stimulation test. Since you have other autoimmune stuff going on adrenal insufficiency/addisons would not be surprising, but you need to know for sure.

I was tapered off the prednisone twice. After the second taper it was several days later that I got sick. I did blame the prednisone for a long time until the endo finally mentioned he had done an antibody check & it was positive. DUH!!! My father had diabetes & my mother had hypothyroid.

How did your doc take you off the cortef? Tapered or all at once?

Wanda[/QUOTE]

Yes my Stim test result was 9 and bumped up to 15(from 11-25 on the 'average' chart).

He does think they could work again, but then again the last time he tried to take me off was when I was still feeling horrible. Once he saw how I responded even worse he said I definitely need it, so since then we have been very, very slowly increasing the dose, but he seems to not want to increase it too much.. even though I'm still in a very difficult position(no physical activity or I feel horrible, I know it's the cortef as every increase helps a lot).

I did ask him the likelihood, and he said "50/50 chance" to get my adrenals to work again. Does that mean we shouldn't raise them up to 20mg? Does that mean I should stay on this low dose and feel horrible? That sounds like a really, really tough choice to make and take a chance on..especially if I want to get a house and actually start working again.. plus we are suppose to get married this summer... gahh.. what a nightmare time for all this to happen...

How wonderful if I could have put this off until I was 40
Your doctor is a menace to your health. He should know & warn you of the things that can happen quickly & what you should do if you had problems when you tapered. You can't just sit around with crisis symptoms & hope for the best.

Do you have a dry mouth, especially at night? Are you drinking at least 8 glasses of water a day & adding salt to most everything. Very important.

Note (Feeling extremely cold) below.


This was copied from elsewhere.........

The causes of an Addisonian crisis

Severe physical shock, e.g. a car accident

Severe infection, e.g. flu with a high temperature

Severe dehydration, e.g. stomach bug with vomiting

The symptoms of an Addisonian crisis

Extreme weakness

Mental confusion

Extreme drowsiness, in advanced cases slipping towards a coma

Pronounced dizziness

Nausea and/or vomiting/diarrhea

Severe headache

Abnormal heart rate either too fast or too slow

Abnormally low blood pressure

Feeling extremely cold

fever

abdominal tenderness

Don't know why they don't have insomnia on that list. Happy to hear you had a good nap. Think how good you would feel if on the correct dose. Tell your doc to diagnose you. Look at the ACTH test results again & make a decision. He should be able to work with you & not get angry. Getting angry means they are defensive & don't know what the answers are.

My endo has readily accepted me having a big say in how my addisons will be treated. I am the first women he has written a script for testosterone gel replacement. There are women on other forums using the testosterone replacement. I also requested scripts for both hydrocortisone & prednisone. I was questioned, but got it. I told him it was my desire to be able to treat myself quickly without asking permission. If I get a bad cold I stress dose with the prednisone which has more anti-inflammatory benefits. Has been two or three years since this has happened.

I do wish others here would pop in with what they know. Everything discussed is helpful to someone. I was so "on the wrong track" before finding an addisons forum & getting information from others. Anyway that is why I know how important it is to talk to people who are looking for information or are being treated/dosed wrong by a doc who doesn't have a clue. Thanks for your kind words.
[QUOTE=WandaB]Your doctor is a menace to your health. He should know & warn you of the things that can happen quickly & what you should do if you had problems when you tapered. You can't just sit around with crisis symptoms & hope for the best.

Do you have a dry mouth, especially at night? Are you drinking at least 8 glasses of water a day & adding salt to most everything. Very important.

Note (Feeling extremely cold) below.


This was copied from elsewhere.........

The causes of an Addisonian crisis

Severe physical shock, e.g. a car accident

Severe infection, e.g. flu with a high temperature

Severe dehydration, e.g. stomach bug with vomiting

The symptoms of an Addisonian crisis

Extreme weakness

Mental confusion

Extreme drowsiness, in advanced cases slipping towards a coma

Pronounced dizziness

Nausea and/or vomiting/diarrhea

Severe headache

Abnormal heart rate – either too fast or too slow

Abnormally low blood pressure

Feeling extremely cold

fever

abdominal tenderness

Don't know why they don't have insomnia on that list. Happy to hear you had a good nap. Think how good you would feel if on the correct dose. Tell your doc to diagnose you. Look at the ACTH test results again & make a decision. He should be able to work with you & not get angry. Getting angry means they are defensive & don't know what the answers are.

My endo has readily accepted me having a big say in how my addisons will be treated. I am the first women he has written a script for testosterone gel replacement. There are women on other forums using the testosterone replacement. I also requested scripts for both hydrocortisone & prednisone. I was questioned, but got it. I told him it was my desire to be able to treat myself quickly without asking permission. If I get a bad cold I stress dose with the prednisone which has more anti-inflammatory benefits. Has been two or three years since this has happened.

I do wish others here would pop in with what they know. Everything discussed is helpful to someone. I was so "on the wrong track" before finding an addisons forum & getting information from others. Anyway that is why I know how important it is to talk to people who are looking for information or are being treated/dosed wrong by a doc who doesn't have a clue. Thanks for your kind words.[/QUOTE]


Hey there, didn't see this here, and been just laying around new years.. nothing to celebrate at the moment.

Anyways, I don't think I have much of a dry mouth, and I do try to drink plenty of fluids, but I also noticed after Wednesday trying to exercise that now I am still having problems and I am even starting to urinate a lot again and not hold my water. Does that sound familiar? When you are undertreated do you urinate a lot and have problems holding your water?

I don't think I am in trouble of having a crisis or anything right now, but I still haven't quite recovered and now I think partially that is to do with having to urinate a lot again and getting dehydrated because of it.

I see that excessive urination is a symptom fo adrenal insufficiency.. any more info on that? What's your experience with that?

By the way hope you had good holidays :)





All times are GMT -7. The time now is 12:32 PM.





© 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!