Hi Vanyel;

I'm fairly new to all of this, being diagnosed only within the past few months with hypothyroidism and Addison's, but I want to say that I feel for you and empathize with your situation. I'm sorry that you are stuck in the darkness as of right now and hope that there is a breakthrough in your diagnosis. I know that it is at times exhausting to be in the midst of pain and confusion but I'm sure you will pull through and be better for it.

Good luck, Vanyel!

hi vanyel-

first of all, welcome to the board! i'm sorry that such crappy reasons bring you here, but i've found that if you have to go through these things, it's much easier to go through them with the support and advice/experience of others.

this particular board has been a little slow lately, but there have been a few new members, also, so if it takes some people awhile to respond to your posts, please don't be discouraged and give up; it's just taking a little while to build the momentum up again, but we're getting there. also, if you have more questions, post away - the more posts we have, the busier this board will be, and the more help you'll get! (duh - i don't mean to sound like an idiot, sorry. i'm not an idiot, i promise!)

ok, now onto your questions: i can only answer the ones i know about, as i have addison's, but am not hypothyroid. i do have an appt. on wednesday with my endo to go over recent test scores however, so who knows - maybe i will be!

from what test/tests are you told that your baseline AM cortisol is 0.9? also, have you had only *one* ACTH test - and which of the three draws came up to a 4.5, do you know? if you could tell me those things, i might be able to help you a little.

is your endo very helpful? one thing i have learned is that if he/she is not, then you need to walk, not run, to another one. also, the fact that you were not given steroids for surgery is AWFUL! good for you for knowing enough to medicate yourself, but still - that is malpractice!

another thing i'm curious about is that your doctor thinks you have excessive adrenalin due to low cortisol? i don't see how this could EVER be the place, unless i am *totally* missing something that has to do w/the thyroid, maybe?

i don't know how vast a knowledge she has of thyroid issues, but sharon hanson is *extremely* helpful when it comes to questions about adrenal deficiency - you might want to message her and see if she can help you.

you are also more than welcome to message me at anytime! i'd love to be able to help you out, but at the very least i'd love to learn what helps.

welcome again, and best of luck!
*misa*

Hi Vanyel, I'm sorry you are so sick. I see you are an outdoors person. Have been checked for Lyme disease?

I'm hypothyroid and have secondary adrenal insufficiency. My cortisol when up on my stim test as well. It only means that your adrenal insufficiency is secondary (related to the pituitary or hypothalamus). Secondary Adrenal Insufficiency is what I have and it is my hypothalamus that send the message to my adrenals to produce cortisol that is messed up.

I know what caused my problems. I was exposed to mold first from a medical procedure and then from a sick building but other biotoxins can and do mess up our endocrine system. As a matter of fact I experienced exactly what Shoemaker calls it the biotoxin pathway. Not only do I have low thyroid and adrenal insufficiency I have low a-MSH. Shoemaker calls this the hormone that regulates our whole endocrine system.

The funny thing for me was when I first started to get real sick I developed a Cushings like syndrome that hasn't gone away. I have a buffalo hump and swelling around my neck as well as frontal obsity. These are signs of cortisol excess and it is exactly what Shoemaker says happens when someone is exposed to a biotoxin. Here's his website. www.biotoxin.info.

Welcome and thanks misababy for your kind words. When I became ill all I did was research because I knew something was making me sick and I wouldn't give up. We all have that quality because we are here on DS trying to figure things out. I'm glad you are all here as well.

Thanks for the replies. It seems hard to get good information. Even the doctors don't seem to know much.

Today was a lousy day, feeling weak and tired, sweating like a maniac over nothing. Tried to eat dinner and just sweat like a dang pig. I hate it. I 'm so tired of it. I want to scream.

To answer someone's question, my ACTH test was the high dose, and they did the labs before and one hour after. 0.9 and 4.5. Not much of a response. Way below what it should have been.

And, the adrenalin overdrive the doc says is due to the lack of cortisol. He says my body kicks out adrenalin instead cause it can and that is what makes me tremulous and sweat. I don't know. Why would eating cause it? I'm confused.

Anyway, thanks for the replies.

Hi Vanyel, - Your journal entry is most interesting. We both have the same diagnoses, as well as taking the same medications, i.e., the corisol (Cortef) and Armour Thyroid...but I am suspicious that your doctor has misinformed you about cortisol deficiency. Unless I am sorely mistaken, you would NOT have an increase in Adrenalin...With Addison's, your adrenal glands are not producing any cortisol, any adrenalin, no "fight or flight" hormones at all. That's why you have to take the cortisol medication. I currently take Cortef and Florinef, both of which my adrenal glands are NOT producing. Any stress, whether it is physical or emotional, and my energy tanks. I too have rivers of sweat, for ANY activity...sometimes even when NOT active....I just sweat like an olympic runner in the rain forest. My body just floods. I THINK it is mainly from the hypothyroidism, but of course, I am not certain. I am surely no doctor!...but it sounds like you need to switch to another endocrinologist for SURE, AND a visit to a neurologist might be a really good idea too. I have made an appointment, as I too have shakiness occasionally, but I have numbness in both hands that comes and goes, as well as electrical jolts from my elbow to my wrist, and at the same time, I feel deep aching on the inside of my upper arms. I mean it REALLY hurts type-of-aching. In the middle of the night I will awaken and one or both of my hands feel like they are on fire. They are completely numb, and burning like raging fire. Last night I got up and plunged my hand into ice water. It eased the burning feeling, but I could still not feel a thing. I have also had profound weakness with the inability to support my own weight, and have fallen down. It is just exactly like a car running completely out of gas. I just go down to the ground, WHAM! Very embarrassing...but also very concerning. So...I am due to see a neurologist in the middle of January. Took three months to get in to see him. Geeeeezzzzz!!! But I think it might be a good idea to discuss all symptoms and reasons for medications and what to expect...but with somebody who specializes in endocrine diseases. If you are going to a GP, there is a good chance he doesn't know much about it. But there are some really good endocrinologists who are very well educated and practicing specialized medicine regarding Addison's disease. Hypothyroidism really complicates it all, so ya just gotta have somebody who is routinely familiar with all the hormonal functions, malfunctions, and medications for Addison's and hypothyroidism.

Well, it's Christmas eve, and I see it's after 11p.m. I've got to get to bed. I don't want to be a rummydunce on Christmas day. God bless you Vanyel. Sending you wishes for a warm and safe Christmas & New year, as well as prayers for better health in your future. Don't get discouraged. Ultimately, it will get clearer...just don't let the doctor get away with not going into great detail and care regarding both the Addison's and hypothyroid.
To quote my father-in-law - "Hang in there!"
:) meadowinthewoods

Mi Meadow,
thanks for the post. The whole adrenal issue is so complicated and difficult to understand, but I think my doctor has a good handle on it. He is not misinformed about the function of the adrenals or their hormones, he is correct. The cortisol and other glucocorticoids come from the cortex of the adrenal gland. THe adrenalin comes from the adrenal medulla. Totally different pathways of production. Addison's, both primary and secondary effect the cortex of the adrenal gland, unless you have a hemorrhage or something that destroys the gland completely. Then you might have adrenalin issues too. So, normally in adrenal insufficiency, you lose the cortex hormones - the cortisol, dhea, progesterone etc. The adrenal production remains intact. You also lose the aldosterone - which is the florinef you and I both take. So, when your body doesn't have the cortisol to respond to stressors, it produces adrenalin instead which produces the excessive sweating and rapid heart rate and tremors - so the theory goes. It makes sense to my physiologically. But it does seem to be a bit different than the standard crap the docs try to tell us. I also take a beta blocker to blunt some of the adrenal effects as it seems to be affecting my heart - my heart skips around all the time and was running way too fast. Cardiac workup showed no problem with the heart itself. So, what next.. . . ..
I do need to see a neurosurgeon. I know I have some issues in my neck with serious arthritis that is impinging on several nerves and on the spinal cord. I just keep putting it off because I don't want to deal with the idea of surgery on my neck. You sound like you have some definite neuro problems as well and I'll be interested to see what comes of your appt. I have not made any appts yet to see neuro people, and I"m so sick of doctors and their crap that I don't know how soon I will. You go see these specialists and all they look at is their tiny window of the picture. I would like a doc that could look at the whole, see all of me, and all of what is going on, and really think about it and figure it out. Where do you find one of those? My doc is the closest I have come, and though he doesn't know everything, he knows enough to say so and we work together to try to figure stuff out. I don't think this world of sub specialists is good for patients. Problems don't happen in isolation. Something else is going on.
I appreciate all your help and advice. It is nice to share with other people that have the same problems. This sweating thing drives me absolutely insane. Have you found anything that helps it? Does taking extra cortisol help? That's what my doc wants me to do. I had to back off the armour thyroid some cause that does seem to calm it down a little. What have you tried? How much armour and cortisol do you take? I seem to not respond well to cortisol and need a lot of it. Makes me worry about side effects. Its dangerous stuff. Sigh. But, thanks for posting and keep me informed how things are going for you. We do sound very similar in a lot of ways so I'm interested in how you do.

Joel

Hi Vanyel-

I hope your doctor is an endocrinologist. And a reputable one one.
Addison's is so rare, a typical doctor may not know the complexity of the glandular system. we did not find answers until we found an expert. Get a referral and keep asking questions!