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Diagnosed with Addison's 2 days ago...feeling poorly
I was put in the hospital last Sunday and after nearly three years of battling symptoms finally diagnosed with Addison's. I've started the treatment but I'm still nauseous, I have no energy, my whole body hurts, I'm not hungry and at times I can't hold my meds down. When I look up Addisonian signs of crisis and when to call the doctor I don't have any of that other than dizziness upon standing. It's Sunday and I really don't want to have to go back to the hospital, until now they thought I was a drug seeking hypochondriac, very frustrating because I knew something was wrong. I'm 30 and I can't even get off the couch to spend the day with my four daughters, is there anything I can do at home or is it something that needs to be looked at? Oh and my temperature has been 96.7 at the highest...weird honestly.
Are you sure it's full blown Addisons. If it's "just" postural hypotension it could be an SAI in which case you are probably on too much medication and if it is - or it could just be time you need the hypotension does seem to take a while to calm down. If your family is medically inclined they might want to check out Secondary Adrenal Insufficiency - and definitely as AddisonMom says - try and get an experienced endo, but keep your eyes open most have no idea about this condition choosing to specialise in the more lucrative areas of infertility and diabetes.
I'm sorry that you are struggling. Take a deep breath. This disease can be controlled and you can live a normal life. It is going to take your body a little while to adjust. You should have been on quite a bit of steroid (cortisone) at first and then slowly gone down. I'm not sure if your doc told you that. Also, I would highly recommend that you find an Endocronologist. Your general doc might feel comfortable managing your Addison's but you shouldn't. Nothing against your doc it's just that endo's know the disease more intamently. It looks like you are getting a lot of good advice here. I agree with what was said about you knowing the sick day rules and also you need to have a shot of Solucortef on hand. That is liquid cortisol for emergencies. It is also imperative that you wear a medic alert bracelet in case you are in some kind of accident. I have a shot in my purse and also in my medicine cabinet and I always wear my bracelet. You can do this. You are going to find out that you are stronger than you realized. I have had this disease for 23 years now. I have had four children and still controlled my disease. I know you can do this. Please find an endocrinologist. I travel three hours to get to mine but it's so important. Don't give up. You will get your life back. As you have questions just ask. And if you just need to vent I will listen. Take care.
You also have dark me know if your skin?
May i ask "how you were diagnosed"? My best friend's mother growing up past away from Addison's and while in nursing school and with her, I'm semi familiar. I'm not buying your diagnosis but I think I could help. When did this start for you and what were your symptoms? Also, how did they diagnose you and Bob who diagnosed you for Addison's?
ALSO... You mention your family being medically inclined, yet no endocrinologist in your area?
ALSO... You mention your family being medically inclined, yet no endocrinologist in your area?
1 Comments
Yes even some fairly large cities don't seem to have some "effective" endocrinologists! We have a teaching hospital with 2 endos and neither one was at all helpful to me -- basically dismissed me saying that I was NORMAL.
I also saw an internal medicine doctor who was training as an endo and when he was testing the achilles tendon reflex and not get much of a response (he and the bp specialist) were BOTH telling me to RELAX my foot!! I have Sheehan's so the pituitary is damaged and doesn't signal the thyroid or the adrenals to make hormones.
I am working with a functional medical doctor and even he is "cautious" since the local medical association scrutinizes them closely!
I also saw an internal medicine doctor who was training as an endo and when he was testing the achilles tendon reflex and not get much of a response (he and the bp specialist) were BOTH telling me to RELAX my foot!! I have Sheehan's so the pituitary is damaged and doesn't signal the thyroid or the adrenals to make hormones.
I am working with a functional medical doctor and even he is "cautious" since the local medical association scrutinizes them closely!
With low K, go out and stock up on tomato juice or v-8 (generic is fine). I tend to water it down a tiny bit, add some extra sea salt and a splash of lemon, and viola, I get a hit of sodium and potassium. I keep big bottles around at all times. Even gatorade or the like will work - but you have to worry about the sugar (unless you get low sugar).
You can even make home made electrolyte drinks too - but the gist of it is to get enough sodium and K in you to get you to function better.
If your BP is that low, your doctor should be adding in, perhaps, florinef (fludrocortisone) which helps you hold sodium. Sodium and potassium work in tandem. Your doc may not want to as she may be concerned about the K - but not know that it is ok. I drop K too, and I take a lot of florinef and salt to keep both levels up and my BP normal-ish. Not everyone spikes. A few of us tank in both. I tank.
When do you take your cortef? Second dose should not be night, but afternoon. You want to mimic a normal body and the normal is to decrease throughout the day and so it is not normal to have cortisol at night - it makes for more side effects as well as can interfere with sleep. There is the amount of dose and how you take it that can create issues. Those of us that take long acting (eek) tend to have more side effects for the loss of the normal rhythm and the body does not rest and recover.
There are links under adrenal insufficiency to help (links here are all thyroid). So check those out and see if that helps too.
You can even make home made electrolyte drinks too - but the gist of it is to get enough sodium and K in you to get you to function better.
If your BP is that low, your doctor should be adding in, perhaps, florinef (fludrocortisone) which helps you hold sodium. Sodium and potassium work in tandem. Your doc may not want to as she may be concerned about the K - but not know that it is ok. I drop K too, and I take a lot of florinef and salt to keep both levels up and my BP normal-ish. Not everyone spikes. A few of us tank in both. I tank.
When do you take your cortef? Second dose should not be night, but afternoon. You want to mimic a normal body and the normal is to decrease throughout the day and so it is not normal to have cortisol at night - it makes for more side effects as well as can interfere with sleep. There is the amount of dose and how you take it that can create issues. Those of us that take long acting (eek) tend to have more side effects for the loss of the normal rhythm and the body does not rest and recover.
There are links under adrenal insufficiency to help (links here are all thyroid). So check those out and see if that helps too.
I do not have an endo yet and where I live there's not one around but I have been calling. My GP said she feels comfortable managing it but with so many misdiagnoses (is that a word lol) I don't feel comfortable at this point.
Salt makes so much sense, I find myself feeling compelled to eat salty things or put salt on my food, which I never do.
I don't have a kit, only Cortef morning and night, still getting used to that but then again it's been a matter of days. I do keep nausea stuff on hand and actually just got some to rub into my wrist for the bad days, we'll see how that goes.
My family and I are still in the very infantile stages of learning and knowing what to do and when but it feels good to have an answer after so long. So many hospitalizations and meds and missing out on life, so looking forward to getting back on track.
My BP has always run low, like 90/60, when I'm sick it goes lower but I've only passed out from it once and that was enough so I will look into a good BP cuff. My family are all medical oriented in some way form or fashion so I'm betting I can get a good one through them.
Potassium drops like crazy, I'm always getting K infusions and pills. I read that in Addison's it usually spikes but I have never had a high reading that I know of. Even upon diagnosis I was getting K through my IV so I'm a little confused on that.
Sorry to be so all over the place but I wanted to make sure I touched on everything. And, to be honest, I feel a little all over the place, very overwhelmed and relieved and frustrated and hopeful and I think I'm running the gamut of emotions and feelings at the moment. However, it is sooo awesome to know that I was right when I kept refusing to take anti-depressants because I knew I was only depressed by the way my health was going not my life in general, if that distinction makes sense.
Thank you so much for your input!
Salt makes so much sense, I find myself feeling compelled to eat salty things or put salt on my food, which I never do.
I don't have a kit, only Cortef morning and night, still getting used to that but then again it's been a matter of days. I do keep nausea stuff on hand and actually just got some to rub into my wrist for the bad days, we'll see how that goes.
My family and I are still in the very infantile stages of learning and knowing what to do and when but it feels good to have an answer after so long. So many hospitalizations and meds and missing out on life, so looking forward to getting back on track.
My BP has always run low, like 90/60, when I'm sick it goes lower but I've only passed out from it once and that was enough so I will look into a good BP cuff. My family are all medical oriented in some way form or fashion so I'm betting I can get a good one through them.
Potassium drops like crazy, I'm always getting K infusions and pills. I read that in Addison's it usually spikes but I have never had a high reading that I know of. Even upon diagnosis I was getting K through my IV so I'm a little confused on that.
Sorry to be so all over the place but I wanted to make sure I touched on everything. And, to be honest, I feel a little all over the place, very overwhelmed and relieved and frustrated and hopeful and I think I'm running the gamut of emotions and feelings at the moment. However, it is sooo awesome to know that I was right when I kept refusing to take anti-depressants because I knew I was only depressed by the way my health was going not my life in general, if that distinction makes sense.
Thank you so much for your input!
1 Comments
Yeah -- I was given antidepressants too and what I really needed was thyroid meds (the T3 ones since I wasn't converting well BECAUSE of the LOW cortisol levels). Since my T3 levels went over the range my doctor discontinued them and prescribed hydrocortisone -- not enough to help conversion of T4 to T3 though. So some friends of mine put me onto a natural thyroid med that can be purchased over the counter SO I am alternating with Synthroid and the natural one and feeling better.
I REALY HATE "self medicating" but when the docs don't help you --- what else can you do?? One of my friend orders some natural adrenal support , but I tested the capsules and they only contain 2 mg. so not much help at all.
ONE of my other friends whose thyroid gland was killed off as a teen always tells me that we should tell the doctors that "we KNOW our bodies" and to be able to get the meds that work for us!
I REALY HATE "self medicating" but when the docs don't help you --- what else can you do?? One of my friend orders some natural adrenal support , but I tested the capsules and they only contain 2 mg. so not much help at all.
ONE of my other friends whose thyroid gland was killed off as a teen always tells me that we should tell the doctors that "we KNOW our bodies" and to be able to get the meds that work for us!
Salt. I know it seems weird, but Addison's is a salt wasting disease. You probably need more sodium. So eat something salt, drink something salty. Go get some bouillon cubes, chips, pretzels, olives, pickles or whatever, and get some salt in you.
Do you have a good endo?
You also need an emergency kit - (injectible cortef, needle and whatever add ons in there), most like anti-nausea meds around, salt tablets, a medic alert bracelet. Extra meds. Did you doc advise you on dosing -as in day to day and the stress dosing when you are ill?
You also need to train your kids to recognize when you are ill so they can, if they are old enough help you get your kit or help.
I would also get copies of your tests to see if you spike or drop in potassium. This is good information to know so you don't take K when you are sick, or know if you need to take more if you need it.
It would also help to get a BP cuff. Your BP is likely low, so check out a few. They all will not work with low BPs.
Do you have a good endo?
You also need an emergency kit - (injectible cortef, needle and whatever add ons in there), most like anti-nausea meds around, salt tablets, a medic alert bracelet. Extra meds. Did you doc advise you on dosing -as in day to day and the stress dosing when you are ill?
You also need to train your kids to recognize when you are ill so they can, if they are old enough help you get your kit or help.
I would also get copies of your tests to see if you spike or drop in potassium. This is good information to know so you don't take K when you are sick, or know if you need to take more if you need it.
It would also help to get a BP cuff. Your BP is likely low, so check out a few. They all will not work with low BPs.
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