hey healing!

nice to see you - on a different board, that is. addison's is many times not the singular problem that a person has. it may be one of many. she needs to see an endocrinologist, STAT, who will run a few easy tests and be able to diagnose her pretty quickly, if she has AD.

has she seen an endo? it doesn't look like it from your post. if a PCP has already put her on cortef *and* florinef, AND her levels are still low, then you are right to be worried, as something is wrong. if she does have AD (which it sounds like to me, but i'm not a doctor nor do i know all of the facts), it may just be a question of adjusting the dosages of her meds.

best of luck, and please let us know what happens. good for you for taking such good care of your mumma, especially with everything that you have going in your own life. you must be a god-send to her. =)

xoxo, misa

Bless your heart I knwo its hard to take care of a ill mother or anybody close to you. Well my question is How much Cortef does she take? How lomg has she been on it? Might take alittle while to work but her cortisol level is still low, Im thinking the copd is the reason for frequent pneumonia. Take her to a good endo. Hope you can find one. It is hard sometimes when you have more thaen one issue to try and figure out. One step at a time. Best wishes. Was she on lots of steroids in the past thats probably where the AD came from unfortunately. The anwer to your question is yes. I m being treated for Lymes and lots of symptoms are kinda the same so sometimes its hard to distguish the difference I gues it just takes time and patience. I hope all goes well. Darla

But to say all that if her cortisol level is that low she definately has adrenal issue. Was her bp low???

Healing,
Sorry to hear about your Mom. It sounds like she is complicated medically, and with the problems she has, it is a challenge to keep thing balanced and under control. Bless you for taking care of her and working to keep on top of it all.
Your Mom probably does not have primary Addison's disease, but adrenal failure due to the medications for her other medical problems - specifically taking steroids for her COPD, and RA. Regardless, if she has adrenal problems, she needs to be on steroids for the rest of her life. The trick is finding the dose that works for her. It sounds like they have thrown some large doses at her but you did not mention what her baseline dosing is. Decadron is not a good choice for addison's. It is too long lasting and does not mimic the usual daily cycle of steroid levels. Medrol dose packs are ok when she is sick - she needs to have a good increase in baseline dosing when she has any stress like illness or surgery. But, they taper off and are not a treatment for addison's either. They are prednisone, which is ok for addison's, but she needs a consistent daily dose - usually 2/3 of the dose in the AM and 1/3 in the afternoon. Then whenever she is stressed, her doses need to be doubled or tripled to see her through the illness, and then tapered back down to her baseline once well again. She should never be off steroids completely. As for the florinef - she may or may not need that, depending on her own production of aldosterone. If her adrenals were shut down due to taking steroids over the years, she probably still makes enough aldosterone of her own. They can check her aldosterone levels to find out. If she has trouble balancing her sodium potassium and blood pressure - she probably does need it. But they should first balance the hydrocortisone (cortisol) dosing.

And, yes, adrenal problems are frequently misdiagnosed as other medical problems, frequently mistreated badly. Your Mom's URI may well have caused adrenal crisis and landed her back in the hospital. She needs to be on steroids.

Normally, endocrinologists deal with addison's disease treatment. If you find a good one, they will take good care of her. There are many out there that don't seem to get it though. You really have to bone up on the disease and treatment yourself and advocate for your Mom because we find that we often have to educate our medical providers in how to treat us. They simply do not know. Even some endos. So be wary, push for answers to your questions, make them teach you until you understand. And if you think they are doing things wrong - call them on it, or find another doctor.

I hope some of that was useful for you. I wish you and your Mom the best, and I hope she is better and out of the hospital soon. Good luck.

Vanyel

Misababy, nice to see you here as well.

@everyone, thanks so much for taking the time to respond. I am a bit frustrated as the story gets worse. So she got a injection of solu cortif 500 mg which caused her to get flushed and her heartrate went really high and the next am her face was really puffy as well as her hands. The next day thursday, she got to go home. I asked the hospitalist to check her cortisol and sodium before i brought her home, he said he didnt see the point. In any case friday am she started getting really out of it again and peed every five minutes, so you guessed it, we went back to the er and her sodium had dropped to 132 and her belly was distended and she had a uti from the cath. The er sent her home on meds for uti and the predisone to take in addition to florinef. The also gave a script to check her sodium today.

This is all so frustrating as her face is puffy again and she said it hurts. I am taking her to see an endo on friday and i have alot of questions. She is getting really stressed as she feels she is never going to feel better. I have done alot of research about this condition and am confused with all the info. I am rambling again so thanks for still listening. The dr did say something like the florinef helps the b/p and kidney and predisone helps something else, any info?

also, what things should i be sure to ask the endo about this....do you all wear medical alert bracelets?
thanks for the help...hope everyone has a great night...

Jen, thanks for the website, it has alot of great info....

hey sweetie. I hate to add to your list of things to ask the doc, but here goes...
since she continues to have URIs and UTIs she may have an immune deficiency-I do. You can (hopefully) get your doc to check her immonoglobulin levels.
I also have addisons because of having to take high doses of steroids. the cause may be important, but most of us are on the same medication as a daily replacement which is cortef/hydrocortisone. some of us also take fludo. these replace different corticoids.