Mother was misdiagnosed with Addison's 15yrs ago. Now what?
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She was diagnosed with Addison's Disease over 15yrs ago. Now her endocrine, a new one by the way, is hinting that she never had Addison's to begin with. He will not come right out and say it. Now that she is getting older I am having to step in and help when and where I can. Her has been in extremely poor health this whole time. And has been disabled. Her DR's do not seem to be much help and she is a difficult patient. Her mental function is not what it should be. And between the DR's incompetence and her trying to self diagnosis as well as self medicate, I don't know what to do! Question: If she does not have Addison's Disease is there any way to find out now? Her new endocrine said "doesn't matter if you had it or not, we still have to treat you as if you do". Also, she is showing all the signs of diabetes and kidney failure. But the DR's seem very unwilling to look at or treat these issues. We have tried the "get new DR's" routine with no luck. How much damage has 15yrs of improper medication caused. Thanks in advance for any advice, Dave
0 likes, 13 replies
1941john david28402
Posted
The most important thing is that your mother continues to take
her Hydrocortisone tablets until she gets a clearer diagnosis. I
would be most concerned about her self-diagnosing/medicating.
This is not a completely precise area of medicine and it is possible for her to develop Type 1 Diabetes as well as Addisons. I wouldsuggest sitting down with her GP and reviewing he whole history and facts/stats of her condition. If you are not happy with her
current Endo can he refer her to another one? If necessary insist on a change.
Good luck
david28402 1941john
Posted
Sorry it has taken so long to reply. I really appreciate the support. I'm just not sure where to turn next. I'm definitely getting concerned about the diabetes aspect. Her DR's have said she's not diabetic, but from all tha research I have done it sure seems like that's what might be happening. I'm also worried about her kidneys. She had test done and even the results (which i had to get copies of and teach, educate myself how to read) all pointed to diabetes and kidney failure. Even one of the DR's put in his conclusion acute kidney failure. But they are still not doing anything. Been up all night with her tonight. Finally got her to sleep, but i think a trip to ER is going to happen tomorrow. She has also fallen a few times. She has extremely fragile and thin skin. When she gets an open wound they take forever to heal. And this last one was starting to get infected. Luckily I was able to get it healed but it was close....Thanks again John
lea28569 david28402
Posted
Sorry I am not sure what happened wit the messaging. To cut a long story short I ended up having both my adrenal glands removed. My mother decided to see my consultant as she has been unwell with the addisons medication and wasn't sure what was happening to her. After several tests the consultant found that she was no longer addisonian. The tests showed she was not anymore. He slowly took her off the meds. It's been about a year since she has been Addison free and she is doing great.
I am not saying that it's the same issue here but just that you may need to consult other endocrinologists.
Good luck
david28402 lea28569
Posted
Thank you Lea. This is her 3rd endocrine. And he just doesn't seem to be doing anything. And we have so few of them in our state. I will look into possibilities of her coming off some of these meds if at all possible. I'm no Dr but my opinion, all these medications are one of the reasons her body is in the shape it's in. The long term side effects are as bad as the disease itself. Thanks again Lea. God bless
Rener lea28569
Posted
I'm so glad I read this. I believe I was misdiagnoed 2 years ago with Addison. My Primary said I had it but Endo I just saw said bob so hopefully I can get off steroids. I've been incredibly ill too
david28402 Rener
Posted
I haven't been on here in a while but not much has changed. My mother is 66 and has been on these meds for many years. So long that if she was misdiagnosed it really doesn't matter anymore. That being said, if you think you were misdiagnosed two years ago I can not stress to you enough the importance in finding out NOW! My advice (IM NOT A DOCTOR!) is to get a second opinion. Find an Addison's group in your area to help. Find out if your endo has other Addison patients. Unfortunately, some of these Dr's who are supposed to be experts spend 99% of their time treating diabetes. Just be vigilant when it comes to your treatment. Educate yourself. If you have the right Dr's you'll be fine. If not, find new ones! I'll pray for you. I don't wish what has happened to my mother on anyone. I ended up moving in with here last year. She's been in ICU a couple times and has fallen several more times. Good luck
Rener
Posted
I started tapering off My gabapentin and most My illnesses are going away! Including My Addison's I believe. Misdiagnosed and 2 years worth of steroids! Look at meds She is taking. Side effects and polypharmacy!
Rener david28402
Posted
ICU I can really relate. Not exaggerating I've been there at least 10x in last year and half. If not pnuemonia it's low sodium. Well all my meds just about say low sodium as side effect. No wonder. That is clearing up to as I'm cutting them off my current list. The new Gap I got a little over 2 years ago has destroyed My health. The last being an elective surgery that could've wait. He said it's ok to do now but after I got bacterial menegitis!! Thank God I didn't do the colonoscopy he wanted too! You know putting someone under is stressful especially for Addison's patients. Not recommended unless a must but He said why not? You will be ok. Imagine have much worse th BM WOUKDVE BEEN. I HAVE NEW GP lined up next week! Before he kills me. His advice has attacked every vital system in My body plus excruitiating pain. Unimaginable pain!
cool_catalan david28402
Posted
As I said, I am revising the Adrenal discussion group and I see replies from before I joined. Unfortunately after having second opinions and more (I have seen 7 endocrinologists since 2015) I am not further forward. I have been trying to wean of HC and I had to go back to 20 mg/day as I felt so sick when taking 14 mg/day a couple of weeks ago. I know I must not take more than 20 mg/dy. If one does, one shuts down one's adrenals. My hypothyroidism also suffering from all this weaning of. I really think that it does matter if you have Addison's or not. I have to have dental work... I have to be aware of the pneumonias, making sure I do not have another one... has your mum had pneumonias? How are things now? I also joined a Addison'sAssociation group. They recommended me a Professor to check my adrenals. Traveled by plane to another city, moved to that city to be near him... time, money and energy wasted. As somebody said, endocrinologists spend 99% of their time with diabetic patients which by the way in the country I live are not doing well. Have I been of some help?
cool_catalan Rener
Posted
They have done the same to me: diagnosed me in 2015, then , undiagnosed me so to speak, I tried to go off steroids but I CANNOT. I stick now to 20 mg/day HC. without it I'd die. I went as low as 14 mg/day very slowly, and I felt so sick then, only a few weeks ago.
sierra03643 david28402
Posted
Your doctor is correct. At this point it does not matter whether she has it or not she will have to be treated as if she does. The reason for this is that the long-term use of steroids will cause the adrenal glands to stop producing adrenal hormones. The chronic use of steroids will also cause osteoporosis. Your mother needs to be checked for that. Your mother cannot be checked to see if she has Addison's Disease unless she goes off the steroids, hydrocortisone and fludrocortisone. Because she has been on the drugs for so long she would need to be weaned off the drugs very slowly or it could kill her. You will never know what she had in the past. I believe that the steroids that she was on have caused her adrenal glands to be compromised but she could have an autoimmune disease that can cause it also. It is called Autoimmune PolyEndocrine Syndrome. Tell your mother to listen to what her body is telling her and do not let the stress of this situation effect you. You could burn out your adrenal glands if you allow yourself to be under chronic stress.
Rener sierra03643
Posted
Would excruciating pain daily also cause your adrenal glands to fail?! My Primary put Me on med that I realize now caused Me to have unreal pain everyday. Felt like running into burning building everyday! That's how much stress pain caused. My Addison's diagnosed 6 months after began new med dosage?!
cool_catalan david28402
Posted