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Thank you so much. You clarified a lot. So, did you get tremors before taking the pills? The endocrine doctor was baffled about why I get tremmors. Its too bad you have to go through this so young. I am 26 and brought this uppon myself by taking ecstasy. I made my bed and now I have to lay in it. Shame on me ruining my health while people suffer their whole lives and don't deserve it. Thanks again.
P.s. I was reading some stuff might want to double check with your doctor about the potassium pills. It can be bad if you are getting too much.

here is some of the paragraphs from [url][/url]

[CENTER]Adrenal Fatigue[/CENTER]
If you are suffering from moderately severe adrenal fatigue, you must be careful how you re-hydrate yourself. Drinking much water or liquid without adequate sodium replacement will make you feel worse because it will dilute the amount of sodium in your blood even further. Also, your cells need salt to absorb fluids because sufficient sodium must be inside the cell before water can be pulled back across the membrane into the cell.

When you are already low on body fluids and electrolytes, as you are in this situation, you should always add salt to your water. Do not drink soft drinks or electrolyte-rich sports drinks, like Gatorade, because they are high in potassium and low in sodium, the opposite of what someone with low coritsol levels who is dehydrated needs. Commercial electrolyte replacement drinks are designed for people who produce an excess of coritsol when exercising, not people who are low on coritsol and aldosterone. Instead, yo are much better off having a glass of water with ¼ - 1 teaspoon salt in it, or eating something salty with water to help replenish both sodium and fluid volume.

In a nation of people suffering from adrenal fatigue, the fast food restaurants come to the rescue. Such restaurants use an excessive amount of salt in their foods; a custom left-over from the old road houses where lots of salt was used in the food to stimulate appetites and whet the thirst (for alcohol, the biggest profit item). Although not a good solution, it supplies “emergency” rations daily to people living in marginal health. It averts the crisis and replenishes their supplies for another few hours.

When your aldosterone levels are low and you are dehydrated and sodium deficient, you may also crave potassium because your body is sending you the message that your cells are low on potassium as well as sodium and water. However, after consuming only a small amount of potassium containing foods or beverages (fruit, fruit juice, sodas and commercial electrolyte replacement drinks), you will probably feel worse because the potassium/sodium ration will be further disrupted.

What you really need in this situation is a combination of all three, water, salt and potassium in the right proportions. One of the easiest ways to accomplish this is to drink small repeated doses of water accompanied by a little food sprinkled with kelp powder. Kelp powder contains both potassium and sodium in an easily assimilated form. Depending upon taste and symptoms, extra salt can be added. Sea salt is a better choice than regular refined table salt, because it contains trace amounts of other minerals in addition to the sodium. Another choice is to drink a vegetable juice blend containing some celery and chard and diluted with purified water.

Usually, within 24-48 hours, your hydration and electrolyte balance will have stabilized enough that you can proceed to an adrenal-supporting diet. You must continue to be careful to drink salted water or vegetable juices 2-4 times during the day, varying the amount of salt according to your taste, and you should avoid potassium-containing foods in the morning when your coritsol and aldosterone levels are low. Never eat or drink electrolyte-depleting or diuretic foods and beverages such as alcohol and coffee, especially if you have been out in the sun or are otherwise dehydrated. One of the problems people with adrenal fatigue constantly deal with is a mild dehydration and sodium depletion.

When there is inadequate aldosterone, the kidney allows sodium, chlorides and water to spill into the urine, and maintains ionic balance by retaining, rather than excreting, potassium. Some of these low aldosterone persons present with symptoms of dehydration. The appearance of the tongue is one of the easily monitored indicators of dehydration. Normally, one should feel considerable slickness when running a finger down the protruded tongue of a person. It should slide easily across the tongue like a cube of ice across a wet piece of waxed paper. If the tongue is rough like sandpaper, or if you feel friction, with your finger catching or sticking to the tongue’s surface, it is an indication of inadequate tissue hydration. The person needs more water intake.

The person may report excessive urination, up to 15 or 20 times daily. Likewise, due to the effect of aldosterone on the sweat glands, the person may report excessive perspiration or perspiration with little or no physical activity. The common factor in all of these persons is a weakness of sartorius, gracilis, posterior tibialis, gastrocnemius, or soleus, and a background of some type of stress.

A person with lowered aldosterone may also demonstrate other symptoms. For a nervous system action potential to take place there must be an adequate supply of sodium on the outside of the cell membrane and an adequate supply of potassium inside the cell. They must be balanced. If this balance is undermined by a loss of sodium and retention of potassium, the nervous system will find it difficult to propagate normal action potentials and maintain itself at a good functional level. This may result in a wide variety of symptoms, including muscle twitches and even cardiac arrhythmias (heart palpitations).

With a chronic sodium-potassium imbalance, the person will show the sign of a paradoxical pupillary reflex. Normally, shining a light into a person’s eye will cause the pupil to constrict. This papillary constriction to light should be able to maintain itself for at least 30 seconds. In the hypoadrenic person (especially in the exhaustion stage of the GAS) you will find one of three things:

1. The pupil will fluctuate opened and closed in response to light.

2. The pupil will fluctuate opened and closed in response to light. (This is a deliberate opening and closing, not the minor flutter or twitch of the normally encountered hippus activity.)

3. The pupil will initially constrict to light, but it will dilate paradoxically with continued light stimulation of less than 30 seconds. This patient will frequently complain of eyes that are sensitive to light (such as when going from indoors to outside on a sunny day) or will be seen wearing sunglasses whenever outdoors or even indoors under bright light.

Another problem related to lowered mineralocorticoid levels in hypoadrenia is a paradoxical, non-pitting edema of the extremities. When the patient with hypoadrenia spills sodium and water into the urine and perspiration, and has a tendency to be dehydrated, we would hardly expect him to show signs of holding water, such as edema. But that is exactly what we do see in some hypoadrenic patients.

With the body spilling large amounts of extracellular sodium and likewise retaining intercellular potassium, we can see how an osmotic differential could develop in the patient’s tissues. If the osmotic difference (created by the increased potassium seeking its intercellular position and the lowered extracellular sodium levels) is severe enough, the body will most often attempt to correct this osmotic imbalance by allowing extracellular fluid to enter the cells. (It is also possible that the body could kick the potassium out of the cell and into the extracellular fluids, and although this occasionally occurs, we rarely see signs of this in the blood potassium levels.) The body is trying to dilute the potassium in the cell with water, to bring the system into osmotic equilibrium. The cells take on water, and the patient has swelling.

Often, these patients are placed on a diuretic by an unenlightened physician whose only basis for this prescription is the patient’s symptoms. The diuretic in these patients rarely helps the condition and often aggravates the tendency toward dehydration. Further, many diuretics act as adrenal (aldosterone) inhibitors, adding even more stress to the adrenals and tending to make the patient worse in the long run.

Please stop the potassium & have your level checked in 6 weeks or so. Taking potassium when you don't need it could be a problem. The Florinef we take is to keep the potassium "down" within the range as it tends to be high in addisonians.

ZJ, not taking steroid at bedtime is a huge myth. I'd say 1 in 5 that try it say it keeps them awake. That means 80% benefit. I couldn't sleep well until I took a bedtime dose. Taking at bedtime can help you sleep better and may give you energy when you wake.

I agree with Wanda, potassium is the enemy for an Addisonian

If you are getting bloated, then you are taking to much salt or drinking to much water or both. Your are the first person I've heard of bloating with salt intake. Part of being addisonian (actually 20 isn't low enough to be considered for Addison's, but for adrenal insufficiency, most people you'll find have numbers much lower than you. Addison's term is way over used, most people on these groups have adrenal insufficiency, not Addison's) is listening to your body. If you let yourself become bloated, then you aren't listening. Also, your blood pressure can get to high.

Also you should still take caffeine sparingly

I think we all appreciate how enthusiastic you are for learning about Addison's and adrenal insufficiency (most kids don't do the research), but remember there are a lot of people on this group and other Addison groups that have had the disease a long time and know a lot more than you. It would be wise to learn as much as you can from them.

If you haven't read these books, I recommend you get them

Adrenal Fatigue The 21st century Stress Syndrome James L. Wilson
Safe Uses of Cortisol by Wm. Max Jefferies

Both books you can get on the net, but Safe uses is hard to find (Don't pay more than $60 on auction and book selling sites) except from the publisher which I'm not sure I can give the name of here. Is cheapest buying direct from the publisher ($43).
I'm sorry If I offended you people. I was only trying to help someone who definitely needed it. I don't think any adult knows what its like for a kid to go through this. I can't even run around with my little brother. Your life has already been planned out, and you have a career, and maybe a family, and you own a house. I'm having a hard time getting through high school and will be lucky If I don't wind up working at a supermarket for the rest of my life. I'm sorry you all have this disease too, and I love to help people. I wouldn't wish this disease on the devil himself. Just because you have this disease doesn't mean you get to be mad at the world for the rest of your days. You have to go on living. And I know I am a strong person because I can do that. I can be happy, and I am. are you?

--sure, I have my ups and downs, days when I would love to be able to go to public school, and have friends, be the star on the track team like I was back in the day. It makes me sad that I don't have those things. But its not anyones fault. I get through it, painting a picture, writing a song, teaching myself how to play a new instrument. I don't do drugs, drink or other things I shouldn’t be doing, and I'm not so quick to judge like MOST people are. I think I accomplish more than some random healthy person. My parents are reall proud of me.

horomoneman- I am lucky enough to see a cutting edge endocrinologist/researcher at cedars sinai in los angeles-(no I'm not rich, my parents are just not going to give up until we have more to work with) and while I may not have dealt with the disease as long as you have, I feel that my doctor has more knowledge and compassion than you have demonstrated in your reply to me. He is finding new things out everday.-if some of the therapies that are working for me have not worked for you, I'm truly sorry-as far as I know the road to new treatment and a cure for addisons is wide open-none of us has all if any, of the answers, the very least we can do here in this forum is maintain an atmosphere of openness and kindness. One knowledge we all share, regardless of our length of time dealing with addisons' is the ignorance and intolerance surrounding it. You might consider re-directing your anger, it can't possibly serve any purpose coming the way of a 15 yr old. I was elated to find this forum, perhaps, like the rest I have discovered, it is just another source of stress. And the whole potassium thing... thats up to the specialist.

taken from article *What you really need in this situation is a combination of all three, water, salt and potassium in the right proportions.*

and to john77--thanks for being nice. That doesn't come around to me to often. take care.

no one knows the right answer, or the cure. And until they do, I'm gonna go about my buisiness.

Zoe Jane (like the song)
You've haven't offended us. I'm not going to be angry with someone that is starting out trying to find answers, especially a child. I'm sorry you took my advice as anger, nor was it an attack, it was meant purely to be helpful.

I'm sure I can speak for everyone, I was impressed with how much you have learned so far, I should have said that before. I've never seen a kid research this like you have, good job! It is always good to listen when other people tell you something that is out of the box, ie. what you've learned from your doc or websites. If you keep on these groups, you will learn more from peoples experiance and knowledge than you could ever learn from reading medical sites.

Dr. Friedman is a very well known doc in this field and I've seen a lot of people report how he has helped them, so you should be in good hands, but never put all your trust into any doc even Dr. Friedman, research like you're doing and I recommend keep us informed as to what is going on, post updated tests, so we can give you an opinion of your treatment.

We all assume if you are taking Florinef and salt you don't need potassium. Without seeing your electrolyte tests, we can't say for sure, but you would be the first I've heard of that needed potassium and salt with florinef. If your potssium was at the bottom of the range or below it after being on the florinef salt for a while then you might need potassium. If he hasn't tested your potssium a while after treatment on florinef and he is having you take potassium, I have to question his wisdom on that. I've never seen what I thought (report from people about how their doc was treating them) was the perfect doctor in treating adrenal insufficiency or Addison's. You can consider someone with a cortisol of 8 or less (opinions vary on the precise value) to have Addison's.

Can you tell us what kind of glucocorticoid are you on and how much (many docs don't give enough, many try to get away with giving a lessor amount) If you haven't had opinions on any of your hormone tests, I recommend you post them here. Did you have the acth stim test? How about ACTH serum? DHEA-S? How much Florinef are you taking? Have you had thyroid testing? The adrenals and thyroid are connected so if you haven't had thyroid testing, ask the doc to do it, very important. If your thyroid is low, this can really hold you back even though you're on cortisol replacement. The thyroid tests to ask for are TSH, Free T3, Free T3 and thyroid antibody tests. Make sure he orders the free tests, not total. I recommend you post these here and the thyroid board here on Healthboards. If you have other hormone deficiencies, these all have to be found and treated if you wish to be as good as you can get.

When I started on Hormone replacement, was started first on cortef, a month later put on Methylprednisolone since I felt absolutely nothing on the cortef. A month after that I was put on Armour thyroid and that really lifted me, I'd say twice as much at least as the methylprednisolone (Medrol). Everytime another hormone was added, lifted me a little more (I'm hypopituitary), but the treatment with the Armour really stands out for me.

Has Dr. Friedman explained you that you have to increase your steroid when under extra stress or sick?

This thread was started by John and we really got off track. Are you there John?

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