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03/18/2010 07:43 PM

adrenal insufficiency

abby1972
Posts: 16
New Member

Hi my name is abby and i'm am new to all of this. I just recently started seeing a new Dr.and he done some blood work , and i just got the results yesterday. All it says is i have adrenal insufficiency and a list of of vitamins that i need to be taking.A lot of vitamins !Shocked Anyway i'm not sure what this means, is it for life , is it a big deal. I have been feeling bad for about the last four years and nobody could find out what was wrong.So i'm so glad to know what is wrong , but i'm not sure what to think about it. My Dr. has me on 32 different vitamins a day.My levels were (cortisol 2) and (dhea 42.7). Is that really bad ?

Thanks in advance to anyone who can help me !

Abby

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03/19/2010 01:26 AM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Abby

Yep 2 is not real good. Should be between about 5 and 20. One of the reasons it is hard to diagnose is that the level varies naturally very widely. What kind of doctor? Were any other tests apart from straight cortisol level done? Most of us on this group take cortisol replacement steroids. Even with that, the energy absorbtion issues mean that some of us take some vitamins too.

Need more info to say whether it is for life. If you actually have adrenal gland failure (primary) it will probably get worse. If the problem is pituitary based (secondary) then it isnt likely to get better by itself unless it was steroid (like from athletic injury treatment) or stress induced (emotional etc). How bad it gets is a function of your understanding your body signs and drug dosing accordingly. Many of us here have also found that Dr specialist knowledge and management of our condition is far below an acceptable level and that we can do better ourselves!

Not much info at this stage. Please share what you know and lots of people will give you feedback.

Bob


03/19/2010 01:28 AM
gwebb
gwebbPosts: 400
Member

Hi Abby and welcome. I ditto what Bob has said, he's given you some good advice. Please ask or post anything as the people on here are great and are all to willing to share their experiences.

Very supportive group here

Gail


03/20/2010 06:38 AM
abby1972
Posts: 16
New Member

Thanks so much for your reply ! And answer your questions , i'm seeing a dr. in integrated medicine. I didn't know what that was when i went to him or i probalby wouldn't have went. But i was so desperate to find out what was wrong with me , and the dr. that sent me to him said he would keep trying until he found out. So when i went he ordered a blood chemisty test and also checked my cortisol , dhea and testoterone - all were low. So he just sent me a letter and said i had adrenal insuffincey and gave me a whole list of vitamins that i need to take. Which is 32 pills a day. I feel so confused and like nobody understands . I think my husband thinks its all in head. I get up in the morning and it is all i can do to make it to the kitchen table , where i sit and look at everything i need to do (i have 4 teenage boys so there is alot to do )and i sit and sit and the more i sit the worse i feel. Please anything you guys that have been dealing with this can tell me , i would be soooo grateful . thanks so much !

03/20/2010 12:22 PM
kgo
kgo  
Posts: 603
Member

Abby, seems like your fatigue is typical. Endocrine is not easy to balance when your not making enough of one or another hormones. My 13 yr old daughter has AI as part of her Hypopituitarism caused by a brain tumor.

As for your husband...well it is in your head! but not in the way he thinks!!!!!

AI is http://en.wikipedia.org/wiki/Adrenal_insufficiency

This is a good place to look. I assume it is in your head b/c your cortisol was low and not nonexistant.

Get those teenage boys to read up on your condition and maybe you will get some sympathy from them and they can start doing the dishes Smile

I understand in part what you are going through. It isn't me who is sick so I cannot completely get it, but when a child has this it is obvious these symptoms are a very real part of the condition. She wants nothing more than to go hang with friends and live her life and she is stopped often by fatigue. You just cant make that up.

Keep heart and know that we are all here and beleive you!!!!

Educate those boys (husband included)

Google AI and research alot and print information on the symptoms so they can understand why you feel crummy all the time.

Has your doctor started you on Hydrocortisone?

If not, ask for it! That was the first thing that my daughter used to bring her appitite back and gave her energy.

Hope you get more answers. I know knowledge is power! You can take control of this when you know what your facing.

I know one other person (personally, not here) who has a similar problem. SHe has addisons disease which is similar but diffrent. So not many understand.

~~~~HUGS!!!~~~~~

Kim


03/20/2010 04:41 PM
tamika65
Posts: 277
Member

I second that Kim ... educated those BOYS! My daughter has not formally diagnosed according to her ped. dr. but she is taking cortef. I do agree that it is in your head but not made up...it is really. It is hard for those how are not suffering with it to understand but with education they should be able to grasp it. I too have found that my daughter regained her appetite and energy once on cortef. Please know you always have a shoulder to lean on. Some of us have AI and some of us have people we love dearly who have it and strive to understand and support them.

Take Care of yourself.

Sue


03/21/2010 04:31 PM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Abby,

From what you wrote (maybe I'm wrong) it sounds like the integrative doc only gave you a list of vitamins and did not start you on hormone replacement. Here is what I know is true about AI: You absolutely have to determine whether it is primary (adrenal gland malfunction) or secondary (pituitary or other cause). You need what is called an ACTH stim test, where they inject you with ACTH to see if your adrenals respond by outputting cortisol. If they do respond, then they know the "broken loop" is in the pituitary (secondary). If they don't, they know it is primary.

This is a critical thing I'm telling you here -- it is very, very important to get proper treatment for this condition. It can be life-threatening if you get into a crisis situation. What symptoms have you been having? Elsewhere in these posts we have come up with extensive lists of symptoms but typical is cramping/pain all over but especially in large muscles like thighs, brain fog, exhaustion, sometimes vision disturbances, nausea, feeling cold, etc. Crisis situations could cause you to get dizzy, confused, or even pass out. Cortisol is needed by every system of your body, from regulating your heart and blood pressure to stabilizing blood sugar, etc.

Please call an endocrinologist and get a consult on the ACTH test. Some integrative docs are great but may not understand the need for immediate hormone replacement - I know the one I consulted tried to talk me into trying some glandular compounds and licorice - no way! I'm not going to play with my health that way, the compounds are not dosage refined and no one even really knows what the licorice does.

Deb


03/21/2010 04:41 PM
tamika65
Posts: 277
Member

I agree with Deb's advice..you need to get proper testing and proper medical care. You have come to the right place to get good information. Stuff that drs out there don't tell you or only bits and pieces.

Sue


03/21/2010 05:30 PM
lorajoy
lorajoy  
Posts: 338
Member

Abby, welcome to our board. After looking over the posts, I totally agree that you need to get proper dosing. Adrenal Insufficiency is very serious and needs to be treated properly. We are here to support you and help you through this time....it can be difficult. You need to see an endocrinologist to be officially diagnosed and then treated with proper medication.

Please keep us informed! Again, we are glad you are here!!!

Lora-Joy

PS> I am a mom of a 9 year old with Primary Adrenal Insufficiency


03/21/2010 08:34 PM
abby1972
Posts: 16
New Member

Oh my , i'm sitting here with tears in my eyes....it is so nice to have opinions from someone who knows something about this. And to have people who understand what i'm feeling ! I went to this Dr. because i knew something was wrong with me and someone told me that he would keep trying until he found out what was wrong sooo.....i went to him and he started me on all these vitamins by just what i told him and also ordered blood work. I haven't talked to him since , he just sent me a copy of my blood work and another list of vitamins to take. So all i know at this point is he wrote adrenal insufficiency on my report. I don't go back to see him until the end of April. So in the mean time i having been reading everything i can find on this. My symptoms are just hurting all over and so very tired all the time. I really do want to thank all of you who wrote me back , it just made my day to see that there is someone i can talk to about this who has experience with it.

Thanks so much,

Abby

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