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Addison's Disease Message Board


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I am hypothyroid and have been on Adrenals glandular supplements for 3 years to help with what my naturopath diagnosed as adrenal fatigue.

The glandular supplements don,t seem to be sufficient and feel i should be on cortef, but can't get my doc to understand.:(

So i ordered this saliva test from the net and these are the results:

Cortisol 8 am [B]0.55 [/B](0.27 to 1.18)
Cortisol 12 am (midnight) [B]0.03 [/B](0.03 to 0.14)
DHEA 8 am [B]57[/B] (71 to 640)

The DHEA is outside the range and the cortisol at night was right on the very edge.

I've also got primary ovarian failure which is often a pre-cursor for Addison's.

Any input from you folks would be greatly appreciated! I haven't had much of a life for the last 8 years or so as stress practically immobilizes me and i think right now i'm probably undertreated for my thyroid too which makes things worse.
I am so sorry! I probably can't offer much help, but I wanted to at least reply and hoping that someone with more knowledge will reply!
I have Lyme and babesia-(WA-1) from a tick bite for 18yrs now, but wasn't diagnosed 'til almost 3 years ago! So--I KNOW YOUR FRUSTRATION! I see a wonderful LLMD that took years to find, and now have many abnormal hormone results that he suspects Addisons; still going through testing.
I was a nurse, but have been totally disabled for 15 years so I've forgotten a lot. But, I agree that you may be undertreated for your hypothyroidism! Also it was you that order the salivia test and did it yourself, not you Dr.???? Although I also see a alternitive medicine Dr. and I think they are very important; I think it's time for you to get a second opinion!!!! You may have a lot more going on than you think. I would see a good (ask around!!!) internal med. Dr. and an Endocrinologist. You certainly have nothing to lose and maybe much to gain.
I know how it feels to want your life back. It's so very hard!!!! I'm right there with you. Please seriously think about seeing more Dr.'s!!!!
Think about it----You have thyroid problems, problems with estrogen and progesterone? (if I remember right?), adrenal fatigue, low DHEA---all endocrine system!!! You need further testing, blood and 24hr urine!!!!

Prayers to you to feel better and regain your life!!!
Thanks you so much jk for your comforting message. So sorry to hear about what you've been through. Your words give me hope that there are doctors out there who can help. I do really appreciate your prayers very much. My faith is what has gotten me through this long-lasting trial. I have been to several doctors, endos, one osteopath, gynocologists, and 2 naturopaths over the years with not much help in regards to the adrenals (except one naturopath who completely recognizes my adrenal issues and yet is limited in what she can do as she's not an MD. her help is what has made it possible for me to at least be able to care for my basic needs by using vitamins, amending my diet, and taking adrenal supplements) and our severe doctor shortage in my city has left me with a nurse practitioner who hasn't been much help. I basically just call her now for refills of my meds until i find another doctor.

I did this saliva test on my own as my nurse pract. doesn't acknowledge my adrenal problem and won't refer me to anyone anymore. She seems to think it's all in my head and is frustrated with me for not taking the statins for my high cholesterol (i can't take the side effects).

I just wanted further confirmation that there is indeed a problem in the adrenal department as i continue to look for a good doc.

Thanks again for your gracious words! They mean a lot to me!
Hi,
I'm so sorry for not repling sooner; I just saw this. I am REALLY sorry that you're going through all of this!!! It is a long-lasting trial that feels like a life time, huh! Your faith WILL continue to get you through this! I know how hard it is as even though I know this, I always have to remind myself; try to give it to God and trust that He will lead you to the right Dr., recieve the correct diagnosis and treatment!
I don't like being sick and I really want my life back just like I know you do too! I know there is a reason why we go through these trials--James 1. If I hadn't gone through all of this then I don't know if I would TRUELY would understand how others feel.
When did you see the Endo.?? Do you remember what tests he/she ordered???? OH BEFORE I FORGET, DO NOT LET ANYONE TELL YOU "IT'S ALL IN YOUR HEAD"!!!!!!! That makes me soooooo mad! So many are told that for years before they are finally correctly diagnosed. I was told that off and on many times. When I was working as a Nurse, many of the Dr.'s would say that about patients and most of the time, a few years later they where diagnosed with something that the Dr.'s had missed!!!!! So, NEVER except it, believe it and never stop fighting!!!
Do you have to have a referral to see a differant Dr. due to your insurance? If not---you go girl; find an endo, infections disease maybe, etc..... I'm sorry that you may have to go out of town; can you drive?

If you don't mind, what are all of your symptoms and when did they start? Do you remember anything, such as flu like sx or anything else right before or when this started?

Hang in there my friend and good for you for persuing this!!!!! Please write back and take care of you; hold on to your faith!!!
I also see a Naturopath but in my case the doc also has an MD so he can prescribe appropriate meds.

I agree with JK44, if your docs are not helping you then it is time to find one who can. To me I would even pay out of pocket or drive to the states if that is what it took to find my health back.

Do you have your thyroid labs? You can post your numbers on the thyroid board and ask for opinions as there are some very educated people on that board.

Hang in there!
Heckofagal,
I just wanted to commend you and thank you for responding to Cossette! So many don't respond and she seems so down! I think I can safely say thay we know exactly how she feels; it's so hard to be so sick and not be able to find help!

Cossette2,

Where are you??????? I don't see anything from you and was just a little worried about you. Please let us know how you are, okay??!!

Also I wanted to let you know something. I have always been told and through Nursing, 24hr urine for your horomone levels and Salyvia are MUCH more reliable. However, I'm now finding out that the Endo. I am seeing does not except and gives no merit to my 24hr urine which is SO ABNORMAL it's not even funny and doesn't use or believe in Salyvia testing!!!!! She only does and takes blood/serum results seriously. BUT, I DISAGREE 100%, and now am finding myself in am uncomfortable situation with results and treatment!! She ordering more testing, so I'll find out more during my apt. on 11/17.

I wanted to add that because although I felt she was/is good, I don't agree with her. If she doesn't treat me correctly then I will find another one!! So-----I pray that you have found a good Dr., or have an apt. with one soon!!!

Please let us know and God bless!!!
Thanks for replying jk!! and thank you ever so much for your prayers!!!! Good news. I live on the Michigan border and have an appointment to see an osteopathic doc in 2 weeks in our twin city across the border! Until recently they were not taking patients, but they called on Wed. and are taking me.I found a friend who can drive me as i can't drive anymore....too dozzy and poor reflexes, panic attacks, etc. God is good. His grace is sufficient thru this trial for sure! 2 cor 12:7-10. It's been a looooong hard walk, but He is faithful even tho we don't always see it. and if this don't work out i will still trust Him....tho He slay me....Job.

Your words have been a sweet breath of fresh air to me. Thank you so much.

My symptoms are many....here, where did i put that list...poor memory is one of them...low stamina, low energy, long recovery after activity, feeling cold, cold feet, high cholesterol, constipation, dry skin, inablitiy to concentrate for long period of time,foggy thingking,slow reflexes,nausea(when under stress),achy bones, muscles,inability to stand for long peiods,irritable,anxiety,poor digestion especially with dairy and wheat,low body temp,dizzy,hypoglycemia,salt craving,jerky with noises,trouble sleeping.....really tired in the mornings especially which i understand is evidence of weak adrenals.

haha, ill have to figure out a way to cut and paste these symptoms at some point as its tirying typing them all out each time.....gotta laugh..good medicine...it beats crying and i feel worse after i cry.

thanks again.....will let you know how i make out on nov. 26 with the osteopath.

oooooh, i just saw your post from yesterday nov 13. i really apologize for not checking for more responses sooner!!! im so glad the Lord reminded me to check this morning! sorry!!! ill check more often from now on.
i would appreciate your prayers for nov. 26 as my poor memory, concentration makes it hard at doc appointments. im bringing a file full of stuff including my saliva test results so i dont have to rely too much on my memory.
(ive edited this message about 4 times...sorry if its confusing).
hugs,rachel (cossete is my pen name)
[QUOTE=Heckofagal;3788769]I also see a Naturopath but in my case the doc also has an MD so he can prescribe appropriate meds.

I agree with JK44, if your docs are not helping you then it is time to find one who can. To me I would even pay out of pocket or drive to the states if that is what it took to find my health back.

Do you have your thyroid labs? You can post your numbers on the thyroid board and ask for opinions as there are some very educated people on that board.

Hang in there![/QUOTE]

Thank you for your reply!! I really appreciate it! It's so nice to have people to share this struggle with on this board. People that understand. As for my thyroid labs, my nurse pract. only does tsh test which is probably why i am undertreated. ive tried to get her to see that free t3 and free t4 is the way to go, but she refuses. im hoping this new osteopath (see my last post) in michigan will do the right labs and recognize what my naturopath saw so clearly. youre blessed to have a naturopathic doc who can prescribe!!!
thanks again. God bless you!!:)
Hi Rachel!!

I'm so sorry for all that you're going through!! It is just miserable to feel that way all the time; I know as I'm right there with you!!!
It's interesting that you have almost every symptom that I have, but I have Lyme disease with 2 coinfections. If I was your Dr., I would also be testing you for lyme!!!

Actually that's why I asked you if you remember anything right before all of this started, ie: flu symptoms, etc.... I'm not saying that you have Lyme disease, but it is odd that we share the exact same sx., however I have a few more just because I went 15yrs before being diagnosed! Lyme can really damage your endocrine systom, especially the Adrenals and Thyroid.

I know how you feel with having trouble with memory and concentrating; it's soooo frusterating!!! I have been to the Dr. and just totally went blank. I had an apt. today with my Endo. and I couldn't comperhend ANYTHING that she said!!! This is one reason I'm glad my husband is always there as I can't drive either, but I count on him to tell me what the Dr. said later----pretty sad!

I am so happy that you found another Dr.!!!! I WILL CERTAINLY KEEP YOU IN MY PRAYERS!!! Just a thought as like I was saying, my memory is absolutely horrible. Sometimes, (when I remember to do it!) I keep a pad and pen by my bed and when I experience a symptom or remember one, I write it down. Then I can take it with me and just hand to them or sometimes it's better to tell them and then hand it to them!!! There have been times that I've handed a Dr. a list of my symptoms, and they baraly scan over it!! One other thing that I've started doing that seems to help is to get the fax # for the Dr. , and send all of your labs and notes to them along with the date of your apt. so hopefully they will take the time to review it all prior to your apt.

I know that you probably already mentioned this, but how long have you been sick like this????? OOOOHHHH I pray that this Dr. will really look into to everything, give you a diagnosis, treatment so that you can have your life back!!!! We just have to continue to hold on to our faith and know the He will lead us down the path of recovery!!!

Many, many prayers your way as I know the Lord with bless you greatly!!!

Keep us updated, okay

Janet
Thank you so much Janet. Again, your words are a great comfort to me. A week from today i see this new doctor/osteopath. i've got a file full of stuff for her and i'm praying she'll be able to zero in on what needs to be done first. i know for sure that my synthroid is too low. my nurse pract. decreased it back in june and ive felt worse ever since. also please forgive me for using mostly lower case letters, but it takes less energy as im really tired. right now i take the road of least resistance just to function and get thru. im certainly blessed to have a good church family who have helped me during this time.
as for when this started, its been quite gradual since my mid to late twenties with panic attacks, poor memory, major depression, etc.
because of my primary ovarian failure my endo back in the 80's had predicted that my thyroid and adrenals might fail. i saw him in toronto once a year back then for my ovarian failure, but stopped seeing him eventually as it was too hard to travel alone all that way as my health was beginning to worsen at that time. isnt it ironic that just when i needed a good endo the most i was unable to get to one? ah well, romans 8 28....it all works out for good. and the only endo in my city is not very good. moving to a place where the docs are more competent is out of the quetion right now as i couldnt handle the stress.
all in all, it could be worse. i can still do my own cooking and cleaning with lots of rest breaks. cant stand for too long or do any physical activity for too long without getting real tired, especially in the morning. i was doing pilates exercises and light aerobics until about 2 months ago and now i cant even get thru that 20 to 30 mins....so i do bits of stretching daily instead. things got worse when she decreased the synthroid in june and worse still when i went off the glandular adrenal in august for almost 2 weeks to do my saliva test. since then, even tho im back on the supplement...and doubled it too...i cant even go for 15 to 30 minute walks anymore. most days i can barely get thru 5 mins. walk.
so, ill let you know how things go next week...im trying not to get my hopes up too high to be dashed again.
i know exactly what you mean by writing notes too!!!! sometimes my desk is litered with them....from grocery lists, to do lists, phone numbers, etc.
thanks again Janet!!! I'll be praying for you too!!
today's the day i see the new osteopathic doc. hoping and praying there'll be a breakthrough with her finally!!!
I saw my new osteopathic doc today and she's ordered lots of blood work. ACTH, DHEA, TSH, Free T3, Free T4, etc. I see her for results in 2 weeks. She wants to check out my pituitary and adrenals and pancreas, cholesterol, etc.

She doesn't seem to have a lot of faith in saliva tests as she hasn't seen any concrete info on its efficacy. That's a bit of a concern to me, but now that ive started, i'll go thru it and see what she finds.

The blood work will be pretty expensive expensive, but i'm hoping my brother will help me pay as my Canadian insurance will not cover elective service out of the province.

rachel.
Cossette~
Your new dr. sounds like she is wanting to get to the bottom of your problem. That must be a relief, let us know when you get your results.
This new osteopathic doc doesn't put a lot of faith in my saliva test.

I saw her today for the follow-up and all the blood tests came back normal :(

Back to square one.

I've increased my glandular adrenal from 2/day to 3/day with 2 at breakfast and 1 at lunch.

Talk about frustration!!!!!

I'm at a loss for words right now as i'm fighting discouragmenet.
Cossette2
I know this is kind of anold thread so not sure if you will see it, but i keep reading in these forums and everytime i look up at the name because this person sounds like ME I see your name. We have so many things in common. I am just starting the supplements and found out my t3 is low so will be starting cytomel next week after seeing the naturopathic dr. I ordered isocort online and feel a little funny about taking it but i think i need it. I took prednisone last year for "Lupus" and it made me feel like my old self again. something i have not felt in eons! I hope cytomel makes even a smiggen of a difference. I am freezing!
I just want to caution you that from what i've learned, adding t3 while your adrenals are not well is not a good idea. In order for that T3 to be properly absorbed into your cells, you need to have healthy adrenals. A lot of doctors don't realise that. What happens when you add T3 is your blood work will come back with high T3 and you will still feel like crap. The T3 will be pooling in your blood. And then, after doing this, you add some form of cortisol WHAMO...you get a major T3 dump into your cells which can be VERY uncomfortable....panic attacks and other really bad symptoms.

So, ideally, you need to straighten out the whole adrenal thing first and foremost. Once that's done you can gradually add T3 by taking Cytomel or switching from synthroid altoghter and going to Armour....or some have added small amounts of armour to synthroid.

I hope you find the help you need.





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