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    Old 01-10-2006, 04:11 PM   #1
    john77
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    question on symptoms

    Hi, I have aquestion on what symptoms are associated with low cortisol levels. A few months ago one of my blood tests showed a low cortisol level. but all the tests came out fine, including the pituitary tests. I was given hydrocortisone but have been real stubborn about taking it. I was hoping it was just a temporary and I heard hydrocortisone is dangerous. I get really tired when I take the pils and it is hard for me to work. Is it possible to take the pills long enough for your body to heal? or do you have to take it for life once you start? I really dont feel that bad when im not on them. My only symptoms are tremors at night when Im going to sleep, a little shakiness sometimes, and foamy urine. My kidney tests came out fine and the urine tests also. Last night I took half a pill and noticed that there was no foam in my urine when I woke up. Not sure yet if it was a coincidence till I try again tomorrow. What is the foam? is it sodium or potassium? I read it might be protien. but that would show on my urine tests right? I think the tremors are because of a mineral imballance. I can't figure out what I need more or less of. Ive heard low cortisol can cause too much potassium but the pills cause too much sodium. I guess I have to really dedicate myself to the pills to know which one to go by. I just hate that they make me tired all the time and I feel horrible if I miss a pill. Sometimes its hard to eat everytime I take them. I guess you can see im really scatterbrained right now. Any help is appreciated. Thanks
    P.S. my blood pressure hovers around 135/70. Shouldn't it be low if my cortisol levels are low?

    Last edited by john77; 01-10-2006 at 04:16 PM.

     
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    Old 01-11-2006, 09:44 AM   #2
    Hormoneman
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    Re: question on symptoms

    We can help you better if you could post all your tests.

     
    Old 01-12-2006, 08:38 AM   #3
    WandaB
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    Re: question on symptoms

    ZJ,

    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.

    Wanda

     
    Old 01-12-2006, 11:19 AM   #4
    Hormoneman
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    Re: question on symptoms

    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).

    Last edited by Hormoneman; 01-12-2006 at 04:19 PM.

     
    Old 01-12-2006, 08:28 PM   #5
    zoejane
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    Re: question on symptoms

    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)

     
    Old 01-12-2006, 09:58 PM   #6
    Hormoneman
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    Re: question on symptoms

    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?

    Last edited by Hormoneman; 01-13-2006 at 12:59 PM.

     
    Old 01-13-2006, 10:58 AM   #7
    john77
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    Re: question on symptoms

    Yeah im still here. I am still not sure what my tremors are from. I tried increasing my sodium intake and I still get them. I might have to up my dosage of hydrocortisone. I usually onlt take 5mg at a time(half a pill) 3 times a day. Last night I got the tremors before going to sleep while laying in bed. I checked my blood sugar a few times last night. it was at 76 before I ate, then still 76 an hour and a half after eating beef stew(1200mg sodium) and taking 5mg of hydrocortisone. so I ate some candy to try to raise my blood sugar and the tremors almost instantly went away. I checked my blood sugar again and it was at 161 and 2 minutes later 120. I woke up after 5 hours of sleep with the tremors and checked my blood sugar again and it was at 83. It seems pretty normal right? Im just confused why it went away when my blood sugar spiked. I shouldn't be having shakes if its related to hypoglycemia right? Im just trying to rule this out to figure out what the real problem is.
    P.S. I usually get muscle twitches at the same time of the tremors. After eating, the tremors go away but not the twitches. Plus I only get muscle twitches when sitting or laying still. Im not sure if you can get them otherwise.

    Last edited by john77; 01-13-2006 at 11:37 AM.

     
    Old 01-13-2006, 11:54 AM   #8
    Hormoneman
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    Re: question on symptoms

    If symptoms of hypoglycemia are resolved by ingesting sugar, that is a pretty good indicator you were going through a hypoglycemic event. 70 and below is usually considered hypoglycemia. That you level read at 76 could mean your bodys cutoff is higher or your meter is inaccurate.

    Since cortisol causes glucose to be produced and in my opinion you are taking a less than helpful amount of cortisol (this amount I've not seen to help anyone with AI), you and your doctor should consider you need a higher dose of the hydrocortisone.

    When I got to my worst before treatment, when I would lay down in bed to go to sleep, very shortly after, my muscles would twitch like you wouldn't believe. My arms and legs and sometimes my torso flying every where. Still not sure why this would happen then, but not the rest of the day.

    Last edited by Hormoneman; 01-13-2006 at 03:32 PM.

     
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