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    Old 12-29-2006, 09:16 PM   #16
    WandaB
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    Re: Desperate words of a desperate man

    Chris,

    Have you had an ACTH stimulation test? Sorry if this has already been talked about. So your doc must think your adrenals could work again. If there is a chance your adrenals will function again you don't want to increase by much or for too long. This is very complicated & you really need the ACTH stimulation test. Since you have other autoimmune stuff going on adrenal insufficiency/addisons would not be surprising, but you need to know for sure.

    I was tapered off the prednisone twice. After the second taper it was several days later that I got sick. I did blame the prednisone for a long time until the endo finally mentioned he had done an antibody check & it was positive. DUH!!! My father had diabetes & my mother had hypothyroid.

    How did your doc take you off the cortef? Tapered or all at once?

    Wanda

     
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    Old 12-29-2006, 09:32 PM   #17
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Chris,

    Have you had an ACTH stimulation test? Sorry if this has already been talked about. So your doc must think your adrenals could work again. If there is a chance your adrenals will function again you don't want to increase by much or for too long. This is very complicated & you really need the ACTH stimulation test. Since you have other autoimmune stuff going on adrenal insufficiency/addisons would not be surprising, but you need to know for sure.

    I was tapered off the prednisone twice. After the second taper it was several days later that I got sick. I did blame the prednisone for a long time until the endo finally mentioned he had done an antibody check & it was positive. DUH!!! My father had diabetes & my mother had hypothyroid.

    How did your doc take you off the cortef? Tapered or all at once?

    Wanda
    Yes my Stim test result was 9 and bumped up to 15(from 11-25 on the 'average' chart).

    He does think they could work again, but then again the last time he tried to take me off was when I was still feeling horrible. Once he saw how I responded even worse he said I definitely need it, so since then we have been very, very slowly increasing the dose, but he seems to not want to increase it too much.. even though I'm still in a very difficult position(no physical activity or I feel horrible, I know it's the cortef as every increase helps a lot).

    I did ask him the likelihood, and he said "50/50 chance" to get my adrenals to work again. Does that mean we shouldn't raise them up to 20mg? Does that mean I should stay on this low dose and feel horrible? That sounds like a really, really tough choice to make and take a chance on..especially if I want to get a house and actually start working again.. plus we are suppose to get married this summer... gahh.. what a nightmare time for all this to happen...

    How wonderful if I could have put this off until I was 40

     
    Old 12-30-2006, 09:41 AM   #18
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    Re: Desperate words of a desperate man

    I am still wondering about the answer to this question.
    How did your doc take you off the cortef? Tapered or all at once?

    Did your doc do an antibody test? Not sure if that works after starting replacement. Seems he would be looking hard at the fact that you have other autoimmune problems. Is there another endo you could see?

    Do you have any bouillon (salt) cubes in the house? Try dissolving one in a cup of hot water & drinking like tea to see if it makes you feel better. I drank 3 or 4 of these most days during the year we were trying to see if my adrenals would wake.

     
    Old 12-30-2006, 12:14 PM   #19
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    I am still wondering about the answer to this question.
    How did your doc take you off the cortef? Tapered or all at once?

    Did your doc do an antibody test? Not sure if that works after starting replacement. Seems he would be looking hard at the fact that you have other autoimmune problems. Is there another endo you could see?

    Do you have any bouillon (salt) cubes in the house? Try dissolving one in a cup of hot water & drinking like tea to see if it makes you feel better. I drank 3 or 4 of these most days during the year we were trying to see if my adrenals would wake.
    Oh sorry about that. He didn't really taper. At this time I was only taking 10mg, so he took 5 mg off one week and then 5 off the next week.

    He told me before we tried this that the first couple weeks may be hell but then after some time I should start feeling better. The better never came, and I just progressively got worse feeling. We went back on it and he's given it a little raise since then by how I respond.

    Also, I was thinking about what your friend did with the 2.5mg for that extra energy she was having.. and then thinking about what you said when you can't sleep. You said you take a little more cortef and that it helps. Well today I did that in between my morning(7.5) and evening(5), and I took 2.5 and I instantly got tired and woke up feeling a lot better. I knew somethin was up when I felt tired as if my body got what it needed and wanted to shut down and repair some damage.

    I don't know if I want to bring this up to my doctor or not that I did this to make him angry, but I may if he doesn't do what I want him to just to show proof. Thanks for the awesome advice and you are a real credit to people suffering from this by being here and just exchanging thoughts and giving experience that could save them months to years to dealing with doctors who care for 10 minutes and are on to their next victim

     
    Old 12-30-2006, 03:32 PM   #20
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    Re: Desperate words of a desperate man

    Your doctor is a menace to your health. He should know & warn you of the things that can happen quickly & what you should do if you had problems when you tapered. You can't just sit around with crisis symptoms & hope for the best.

    Do you have a dry mouth, especially at night? Are you drinking at least 8 glasses of water a day & adding salt to most everything. Very important.

    Note (Feeling extremely cold) below.


    This was copied from elsewhere.........

    The causes of an Addisonian crisis

    Severe physical shock, e.g. a car accident

    Severe infection, e.g. flu with a high temperature

    Severe dehydration, e.g. stomach bug with vomiting

    The symptoms of an Addisonian crisis

    Extreme weakness

    Mental confusion

    Extreme drowsiness, in advanced cases slipping towards a coma

    Pronounced dizziness

    Nausea and/or vomiting/diarrhea

    Severe headache

    Abnormal heart rate either too fast or too slow

    Abnormally low blood pressure

    Feeling extremely cold

    fever

    abdominal tenderness

    Don't know why they don't have insomnia on that list. Happy to hear you had a good nap. Think how good you would feel if on the correct dose. Tell your doc to diagnose you. Look at the ACTH test results again & make a decision. He should be able to work with you & not get angry. Getting angry means they are defensive & don't know what the answers are.

    My endo has readily accepted me having a big say in how my addisons will be treated. I am the first women he has written a script for testosterone gel replacement. There are women on other forums using the testosterone replacement. I also requested scripts for both hydrocortisone & prednisone. I was questioned, but got it. I told him it was my desire to be able to treat myself quickly without asking permission. If I get a bad cold I stress dose with the prednisone which has more anti-inflammatory benefits. Has been two or three years since this has happened.

    I do wish others here would pop in with what they know. Everything discussed is helpful to someone. I was so "on the wrong track" before finding an addisons forum & getting information from others. Anyway that is why I know how important it is to talk to people who are looking for information or are being treated/dosed wrong by a doc who doesn't have a clue. Thanks for your kind words.

     
    Old 01-02-2007, 06:30 AM   #21
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Your doctor is a menace to your health. He should know & warn you of the things that can happen quickly & what you should do if you had problems when you tapered. You can't just sit around with crisis symptoms & hope for the best.

    Do you have a dry mouth, especially at night? Are you drinking at least 8 glasses of water a day & adding salt to most everything. Very important.

    Note (Feeling extremely cold) below.


    This was copied from elsewhere.........

    The causes of an Addisonian crisis

    Severe physical shock, e.g. a car accident

    Severe infection, e.g. flu with a high temperature

    Severe dehydration, e.g. stomach bug with vomiting

    The symptoms of an Addisonian crisis

    Extreme weakness

    Mental confusion

    Extreme drowsiness, in advanced cases slipping towards a coma

    Pronounced dizziness

    Nausea and/or vomiting/diarrhea

    Severe headache

    Abnormal heart rate – either too fast or too slow

    Abnormally low blood pressure

    Feeling extremely cold

    fever

    abdominal tenderness

    Don't know why they don't have insomnia on that list. Happy to hear you had a good nap. Think how good you would feel if on the correct dose. Tell your doc to diagnose you. Look at the ACTH test results again & make a decision. He should be able to work with you & not get angry. Getting angry means they are defensive & don't know what the answers are.

    My endo has readily accepted me having a big say in how my addisons will be treated. I am the first women he has written a script for testosterone gel replacement. There are women on other forums using the testosterone replacement. I also requested scripts for both hydrocortisone & prednisone. I was questioned, but got it. I told him it was my desire to be able to treat myself quickly without asking permission. If I get a bad cold I stress dose with the prednisone which has more anti-inflammatory benefits. Has been two or three years since this has happened.

    I do wish others here would pop in with what they know. Everything discussed is helpful to someone. I was so "on the wrong track" before finding an addisons forum & getting information from others. Anyway that is why I know how important it is to talk to people who are looking for information or are being treated/dosed wrong by a doc who doesn't have a clue. Thanks for your kind words.

    Hey there, didn't see this here, and been just laying around new years.. nothing to celebrate at the moment.

    Anyways, I don't think I have much of a dry mouth, and I do try to drink plenty of fluids, but I also noticed after Wednesday trying to exercise that now I am still having problems and I am even starting to urinate a lot again and not hold my water. Does that sound familiar? When you are undertreated do you urinate a lot and have problems holding your water?

    I don't think I am in trouble of having a crisis or anything right now, but I still haven't quite recovered and now I think partially that is to do with having to urinate a lot again and getting dehydrated because of it.

    I see that excessive urination is a symptom fo adrenal insufficiency.. any more info on that? What's your experience with that?

    By the way hope you had good holidays

    Last edited by chrisS81; 01-02-2007 at 06:33 AM.

     
    Old 01-02-2007, 09:47 AM   #22
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    Re: Desperate words of a desperate man

    Chris,

    Good that you were resting on New Years. We had a quiet New Year's eve at home. Much safer to be off the roads out here in the country.

    Your frequent urination could be adrenal related. With primary addisons I have to take 1/2 tab of Florinef to help me retain water, keep the salt level up & the potassium where it should be. Many take a whole tablet or more.

    I think I remember you have diabetes already (can also cause frequent urination)? When was your last electrolyte check done? Are you being checked often? Are you eating salt?

     
    Old 01-02-2007, 08:50 PM   #23
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Chris,

    Good that you were resting on New Years. We had a quiet New Year's eve at home. Much safer to be off the roads out here in the country.

    Your frequent urination could be adrenal related. With primary addisons I have to take 1/2 tab of Florinef to help me retain water, keep the salt level up & the potassium where it should be. Many take a whole tablet or more.

    I think I remember you have diabetes already (can also cause frequent urination)? When was your last electrolyte check done? Are you being checked often? Are you eating salt?

    Everytime we have had electrolytes done they have been fine, (salt one or two points below but pretty normal everything). I do have diabetes insipidus so that is why I take the desmopressin.. but oddly enough I think the cortef and DI are related.. as when I bumped up my cortef awhile back I went from 6 sprays a day(which is extreme for DI) to 3. As if the cortef helped cure or heal me somewhat... or just having more cortisol helped take care of that, so they are connected I noticed.. just don't know how they relate exactly.

    I'm not craving salt anymore, I try to eat healthy but I eat whatever I want, never have to worry about gaining weight.

    I hope I can have a quiet new years with my fiance some day. She's always into doing family parties, going to parties, being social all the time for holidays. Oh well.. what can ya do

     
    Old 01-03-2007, 08:20 AM   #24
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    Re: Desperate words of a desperate man

    Chris,
    There is a addisons diabetes forum. You will find it if you do a search using those words. You would probably get some good info there.

     
    Old 01-07-2007, 05:26 PM   #25
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Chris,
    There is a addisons diabetes forum. You will find it if you do a search using those words. You would probably get some good info there.

    Addison's diabetes? Where at? And is it sugar diabetes or water diabetes or both? Also I had a question.. what happens when you take your medication the same time every day, but wake up and go to bed at different times?

    For instance, usually I take my cortef at 7am and 4pm. Today I went to bed at 3am(had trouble getting to bed) and woke up at 7 to eat and take my cortef, and was still tired so I went back to bed and then woke up again at 1pm. stayed awake and took my meds at 4pm.

    Is this a bad idea? Anything negative happen to you if you do that?

     
    Old 01-07-2007, 06:20 PM   #26
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by chrisS81
    Addison's diabetes? Where at? And is it sugar diabetes or water diabetes or both? Also I had a question.. what happens when you take your medication the same time every day, but wake up and go to bed at different times?

    For instance, usually I take my cortef at 7am and 4pm. Today I went to bed at 3am(had trouble getting to bed) and woke up at 7 to eat and take my cortef, and was still tired so I went back to bed and then woke up again at 1pm. stayed awake and took my meds at 4pm.

    Is this a bad idea? Anything negative happen to you if you do that?
    I was wondering the same thing,my schedule is different everyday and I never get up at the same time.

     
    Old 01-07-2007, 07:20 PM   #27
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    Re: Desperate words of a desperate man

    Chris,

    You will have to do a search using addisons diabetes. I can't give you the link.

    There is no negative effect from going back to bed after meds. Many of us wake in the early hours & can't get back to sleep. The body is saying "I need some cortisol". Some can't get to sleep so take 2.5mg or so just before getting into bed.

    I take my thyroid med about 5am, first 5mg Hydrocortisone around 6am & go back to sleep. Another 5mg when I get up, 5mg at noon & 5mg at 5pm. Have just reduced my dose to 20mg from 22.5mg since I am less active in the winter. Most of my HC is taken without food.

    What I am getting at is....there are allot of hours between your doses. I know many people do it that way. I just don't think it is the best way to replace cortisol. Just my opinion.

     
    Old 01-07-2007, 08:14 PM   #28
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Chris,

    You will have to do a search using addisons diabetes. I can't give you the link.

    There is no negative effect from going back to bed after meds. Many of us wake in the early hours & can't get back to sleep. The body is saying "I need some cortisol". Some can't get to sleep so take 2.5mg or so just before getting into bed.

    I take my thyroid med about 5am, first 5mg Hydrocortisone around 6am & go back to sleep. Another 5mg when I get up, 5mg at noon & 5mg at 5pm. Have just reduced my dose to 20mg from 22.5mg since I am less active in the winter. Most of my HC is taken without food.

    What I am getting at is....there are allot of hours between your doses. I know many people do it that way. I just don't think it is the best way to replace cortisol. Just my opinion.
    Hmm, I see.. I was feeling really tired today, I was wondering if it was because I took my morning cortef and just fell asleep for 6-7 hours after. Since cortef is suppose to be taken in the morning I thought that might be a problem.

    Isn't cortisol suppose to be for the morning? How do you feel if you take cortef before bed? Have you ever tried taking 5-10mg before bedtime or slept 6+ hours after taking that much cortef? And how did you respond? Normal?

    Just trying to find out what's going on and why I'm so drowsy today(could be the 30 minute walk on friday.. who knows)

     
    Old 01-07-2007, 09:49 PM   #29
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    Re: Desperate words of a desperate man

    First dose of Cortef is for morning. Some people have trouble getting to sleep so they take a bit at bedtime. This is not the dose you would take in the morning & it shouldn't be done unless there is a constant problem getting to sleep. Sometimes it is caused from taking the last dose of the day too late or too big a dose.

    Only time I have taken 5mg at bedtime is when I forgot to take my last dose for the day. No problem getting to sleep.

    I do take 5mg every morning while still in bed & go back to sleep.

    How long have you been taking Cortef? Are you taking 30mg daily? Are you normally tired? Are you drinking enough water & adding salt to your food?

     
    Old 01-07-2007, 10:31 PM   #30
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    First dose of Cortef is for morning. Some people have trouble getting to sleep so they take a bit at bedtime. This is not the dose you would take in the morning & it shouldn't be done unless there is a constant problem getting to sleep. Sometimes it is caused from taking the last dose of the day too late or too big a dose.

    Only time I have taken 5mg at bedtime is when I forgot to take my last dose for the day. No problem getting to sleep.

    I do take 5mg every morning while still in bed & go back to sleep.

    How long have you been taking Cortef? Are you taking 30mg daily? Are you normally tired? Are you drinking enough water & adding salt to your food?
    No I'm taking 20mg right now. Although I do have problems getting to sleep some nights so what you said may ring true about taking too big of a dose too late.

    My dose is broken down like 10 at 7am, and then 10mg at 4-5pm usually. I'm thinking maybe I should try 10 at 7, 5 at 12, and 5 at 3 and see what happens there. Maybe I'll get to sleep better then. I'm not adding salt to my food, but what if I start drinking some gatorade in the morning and then some in the evening? There is good electrolytes and sodium in that.

    I notice I did feel better this evening after I had some gatorade, or it could have been just me being awake long enough.

     
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