Courtney’s Addison’s Disease Journey - Hear the inspiring story of a young woman who experienced tremendous challenges after giving birth until finally diagnosed.
I too have it. It took my doctors months to figure it out. It took an adrenal crisis on the operating table. I was having a muscle biopsy. Because of all the problems and weakness I was having. Like you said it’s very rare. Very few doctors will ever see it in their careers.
I was diagnosed in 2004 and I understand what each one goes through. I’ve had several crises and have been hospitalized. I’m so glad I ran across this because it shows we’re not alone.
Even though I wouldn't wish this disease on anyone, I have more courage knowing I am not alone. I am sorry your doctor thought the same as mine did. I often wonder how many people out there who have been diagnosed with depression actually have Addison's Disease. Thank you for your words. Take care of you. I am also thankful for the NADF. They helped give me courage to talk about Addisons with my then doctor.
So much like my own story I have be diagnosed since 2009 I was sick for three years and got down to 79 lbs and was so close to death before diagnosis grateful for every day with my family
I tried anti-depressants and anti-anxiety meds for years, and had to drop out of college twice, before finally being diagnosed at 27. Now 36 and I was diagnosed with hashimoto's hypothyroidism last year too. Thank you for making this video. You're so lucky to have such a helpful support group!
@@weebee606 i take LDN. It adjusts my cortisol level. My prescription ran out and now I'm low again and can barely get out of bed. Ask your doctor to read the study to see if this therapy might fit. Never hurts to ask and try another therapy other than steroids. You might print some studied and take them in. My cardiologist prescribed. (I hate having to go out of the post and go back in to reply on the boards. I wish CZcams would fix this. 😵💫)
I got diagnosed with hashimoto this week. Going to get tested for addisons tomorrow. Pretty sure i have it. Can i connect with you to talk sometime please
Glad to hear you have not had a crisis yet and hopefully you will not! NADF has an entire brochure dedicated to being newly diagnosed: www.nadf.us/newly-diagnosed.html Reach out to nadfsupport@nadf.us if you have any questions.
Did you have the tan everyone talks about? I have Graves already but I also have every symptom of Addisons except tan skin. Whatever is wrong with me is ruining my life.
I am getting Immunotherapy for Stomach Cancer and started having some major fatigue and bad headaches and several other symptom's thankfully after I passed out during a routine blood draw before cancer treatment my oncologist had me tested and found out that I had addisons, I started on low dose prednisone and immediately started feeling better, I wa only misdiagnosed for a month, my heart goes out for people that suffer for years before they are correctly diagnosed,
I have been having extreme fatigue and muscle and joint pain for months now. Just has a ACTH test and that was high but am cortisol levels were normal. I'm hoping for further testing because I know something is wrong. I'm craving salt and losing my hair. I also am either not hungry or if I do eat a lot losing weight. I was on prednisone because they thought I had Crohn's disease but weaned off and that's when my problems really started. I hope I can get some answers because I'm not sure how much longer I can last being like this.
I jus got out of the hospital from having an addisonian crisis. It was scary n I have had both types of adrenal insufficiency all my life. This was the first time a crisis has ever happened.
I’ve been diagnosed with adrenal insufficiency years ago. When I started the hydrocortisone I had a massive dizzy spell so I stopped it. My calves hurt so bad after an average day at work. My joints, cartilage and muscles I wake up every day with pain. My worst problem is that I have these crashes that I call “alligator death roll” because it is just that disturbing. Had one during the day on Thursday, am still exhausted. It was followed by a bad migraine that lasted 24 hours. My siblings are diabetics. I feel like this is worse because there are no solutions.
Sounds like your potassium level is high. Mine got so high the ER staff had never seen one that high (7.8). Autoimmune diseases usually don't stop at one. I have 8 now ughh!
What about pain? My wife anguished in pain daily. Muscle and joint pain, doctor won't give her anything except a neurological medication for pain that doest work
Hello I have maximum all the symptoms, skin tanning, lost approx 9 kgs of weight, extreme fatigue and pain in body, heart pounding,and irritability I had my am cortisol test but that turn out to be normal, could it still be Addison? or its ruled out? Plz guide so that I can ask my endo for further testing
Did you find any relief? My sister is having anxiety with Addison's right now. Care to discuss? I think all the stress of covid has gotten to her and that is where here acute symptoms are coming from.
I had Cushings and had the pituitary surgery to cure it. In turn I got Addisons but also diabetes insipidus. I have crazy anxiety right now mostly at night. That’s the time I take my DI nasal spray meds. That’s when my anxiety peaks. It might be the meds but is anxiety common with addisons?
@@piyush6103 Thank You So Much 🙏🏽 MY Dad is Recovering very well is just that we still find some difficulty in some other area but Prayers indeed has been very helpful. Please if you'll pray for us too we'd Appreciate it More Prayer More Advantage Thank You Again🙂🙏🏽
Hi I have just had a coristol test and came back low, doctors rung and said they expect Addison's but I have no sickness or tanning ect......could it still be Addison's
Yes, it could still be adrenal insufficiency. Be sure to continue the testing as soon as possible and use the NADF website for resources and documents, including the 'Facts you Need to Know'. You can also contact NADF if you have any questions using the contact form.
Similar to many conditions, Addison's disease can present itself a little differently in each individual. Depending upon how far along the adrenal glands are damaged could reflect upon symptoms. What has your Doctor done as a follow up since the initial testing?
@@nadf_adrenal they tested for Addison's and it wasn't so......even though my cortisol is below 3.....nothing now, in England that's it, they just leave u to it
@@nadf_adrenal they rung me today and said my cortisol was even lower this time before the storm test, but it's not my kidneys They now need to test my brain
@@Themozartthug the same thing has happened to me a few months back my cortisol levels were very low too. But when they did the baseline test they went up though they were still not high enough they still went up. I also don’t have that much skin changes but I do deal with a lot of the other symptoms, just letting you know you aren’t alone and I hope u find some certainty ! :)
Please know you are not alone and that there is a very large community of individuals living with Adrenal Disease here to support you. Feel free to reach out to nadfsupport@nadf.us at any time
The pharmacist was correct about the dangers of long term steroid use, but unfortunately with addison's it has now become necessary. And big pharma rejoices!
People with adrenal insufficiency need the replacement dosage, for what their body is not producing. www.nadf.us/uploads/1/3/0/1/130191972/adrenal_hormone_replacement_protocol_and_quick_guide_9-30-21.pdf www.nadf.us/primary-adrenal-insufficiency-addisonrsquos-disease.html
Never ever advocate for yourself all that gets she was a script for an antidepressant in a psych diagnosis in your chart. Always have an advocate on the phone or with you never speak for yourself always have someone else speak for you. It’s OK to speak a little bit but you’re not gonna get taken serious if you self advocate. As you say in your story, you’re stupid doctor just gave her antidepressant. Didn’t give a crap about what you were saying. nobody should ever be taking psych pills until all physical illnesses are tested and ruled out.
I too have it. It took my doctors months to figure it out. It took an adrenal crisis on the operating table. I was having a muscle biopsy. Because of all the problems and weakness I was having. Like you said it’s very rare. Very few doctors will ever see it in their careers.
Muscle biopsy for mitochondrial disease?
Tanned skin is what got your dad to remember, but in some cases of addisons the hyperpigmentation does not occur. Scary thought
I was born with Addisons Disease in 1970 52 years on steroids its been tough.
Great video good luck
My new born son was diagnosed with the same. Can I contact you for a chat, if you don't mind.
So you have been taking steriods all that time and feeling good
I was diagnosed in 2004 and I understand what each one goes through. I’ve had several crises and have been hospitalized. I’m so glad I ran across this because it shows we’re not alone.
Even though I wouldn't wish this disease on anyone, I have more courage knowing I am not alone. I am sorry your doctor thought the same as mine did. I often wonder how many people out there who have been diagnosed with depression actually have Addison's Disease. Thank you for your words. Take care of you. I am also thankful for the NADF. They helped give me courage to talk about Addisons with my then doctor.
So much like my own story I have be diagnosed since 2009 I was sick for three years and got down to 79 lbs and was so close to death before diagnosis grateful for every day with my family
I tried anti-depressants and anti-anxiety meds for years, and had to drop out of college twice, before finally being diagnosed at 27. Now 36 and I was diagnosed with hashimoto's hypothyroidism last year too. Thank you for making this video. You're so lucky to have such a helpful support group!
hashimoto is not that bad, hyperthyroidism is way worse @@NabilAkki77324
Have you tried Low Dose Naltrexone therapy?
@@StankyCoyote i have not. Talk to your endochrinologist if you're thinking of switching medications
@@weebee606 i take LDN. It adjusts my cortisol level. My prescription ran out and now I'm low again and can barely get out of bed. Ask your doctor to read the study to see if this therapy might fit. Never hurts to ask and try another therapy other than steroids.
You might print some studied and take them in. My cardiologist prescribed.
(I hate having to go out of the post and go back in to reply on the boards. I wish CZcams would fix this. 😵💫)
I got diagnosed with hashimoto this week. Going to get tested for addisons tomorrow. Pretty sure i have it. Can i connect with you to talk sometime please
thank you for sharing your story.
Wow thank you for sharing….
Thank you for this ♥️♥️😭😭😭♥️♥️♥️
Thank you for this
Thanks for sharing.
Diagnosed this past year. This is a new to me. Haven't had a crisis yet and hope not to. Been taking my meds regularly. Thanks for sharing.
Glad to hear you have not had a crisis yet and hopefully you will not! NADF has an entire brochure dedicated to being newly diagnosed: www.nadf.us/newly-diagnosed.html
Reach out to nadfsupport@nadf.us if you have any questions.
Did you have the tan everyone talks about? I have Graves already but I also have every symptom of Addisons except tan skin. Whatever is wrong with me is ruining my life.
Thank u ☺️
I am getting Immunotherapy for Stomach Cancer and started having some major fatigue and bad headaches and several other symptom's thankfully after I passed out during a routine blood draw before cancer treatment my oncologist had me tested and found out that I had addisons, I started on low dose prednisone and immediately started feeling better, I wa only misdiagnosed for a month, my heart goes out for people that suffer for years before they are correctly diagnosed,
❤ thank you for sharing your story. I’ve been trying to figure out what is going on for years but this sounds Exactly like what I’m going through.
Same!! To a T!!
I have been having extreme fatigue and muscle and joint pain for months now. Just has a ACTH test and that was high but am cortisol levels were normal. I'm hoping for further testing because I know something is wrong. I'm craving salt and losing my hair. I also am either not hungry or if I do eat a lot losing weight. I was on prednisone because they thought I had Crohn's disease but weaned off and that's when my problems really started. I hope I can get some answers because I'm not sure how much longer I can last being like this.
Check for hypothyroidism maybe? I hope you find some answers
May be look for an adrenal adenoma. Ct scan of the abdomen perhaps.
i have it too and i almost died at 12 and im 13 now❤❤❤❤
I jus got out of the hospital from having an addisonian crisis. It was scary n I have had both types of adrenal insufficiency all my life. This was the first time a crisis has ever happened.
What were your cortisol levels atvthe time you got diagnosed?
I’ve been diagnosed with adrenal insufficiency years ago. When I started the hydrocortisone I had a massive dizzy spell so I stopped it. My calves hurt so bad after an average day at work. My joints, cartilage and muscles I wake up every day with pain. My worst problem is that I have these crashes that I call “alligator death roll” because it is just that disturbing. Had one during the day on Thursday, am still exhausted. It was followed by a bad migraine that lasted 24 hours. My siblings are diabetics. I feel like this is worse because there are no solutions.
Sounds like your potassium level is high. Mine got so high the ER staff had never seen one that high (7.8). Autoimmune diseases usually don't stop at one. I have 8 now ughh!
but there is a solution-taking cortisone. You cannot live without it.
What about pain? My wife anguished in pain daily. Muscle and joint pain, doctor won't give her anything except a neurological medication for pain that doest work
Hello
I have maximum all the symptoms, skin tanning, lost approx 9 kgs of weight, extreme fatigue and pain in body, heart pounding,and irritability
I had my am cortisol test but that turn out to be normal, could it still be Addison? or its ruled out?
Plz guide so that I can ask my endo for further testing
How u feeling now
Any recommendations for the anxiety and stress ?? Is been a month I had all this :( is part of the adisson? 😥
Did you find any relief? My sister is having anxiety with Addison's right now. Care to discuss? I think all the stress of covid has gotten to her and that is where here acute symptoms are coming from.
I had Cushings and had the pituitary surgery to cure it. In turn I got Addisons but also diabetes insipidus. I have crazy anxiety right now mostly at night. That’s the time I take my DI nasal spray meds. That’s when my anxiety peaks. It might be the meds but is anxiety common with addisons?
Both myself and my daughter suffer from addisons. Quite usual so I believe
My sister has addison's. She is afraid and she needs a positive support group. Any ideas?
try omnacortil 5 mg(half morning and half at night) and floricot 100 mg (at night half only)
My Dad was diagnosed with Addison case and it's difficult to find the medication here in Nigeria.
We need Help!!!❤
Just pray to God bro and take care of your dad
@@piyush6103 Thank You So Much 🙏🏽 MY Dad is Recovering very well is just that we still find some difficulty in some other area but Prayers indeed has been very helpful. Please if you'll pray for us too we'd Appreciate it More Prayer More Advantage Thank You Again🙂🙏🏽
Hi I have just had a coristol test and came back low, doctors rung and said they expect Addison's but I have no sickness or tanning ect......could it still be Addison's
Yes, it could still be adrenal insufficiency. Be sure to continue the testing as soon as possible and use the NADF website for resources and documents, including the 'Facts you Need to Know'. You can also contact NADF if you have any questions using the contact form.
Similar to many conditions, Addison's disease can present itself a little differently in each individual. Depending upon how far along the adrenal glands are damaged could reflect upon symptoms. What has your Doctor done as a follow up since the initial testing?
@@nadf_adrenal they tested for Addison's and it wasn't so......even though my cortisol is below 3.....nothing now, in England that's it, they just leave u to it
@@nadf_adrenal they rung me today and said my cortisol was even lower this time before the storm test, but it's not my kidneys
They now need to test my brain
@@Themozartthug the same thing has happened to me a few months back my cortisol levels were very low too. But when they did the baseline test they went up though they were still not high enough they still went up. I also don’t have that much skin changes but I do deal with a lot of the other symptoms, just letting you know you aren’t alone and I hope u find some certainty ! :)
Omg I'm scary and this new body I have😭😭😭
Please know you are not alone and that there is a very large community of individuals living with Adrenal Disease here to support you. Feel free to reach out to nadfsupport@nadf.us at any time
The pharmacist was correct about the dangers of long term steroid use, but unfortunately with addison's it has now become necessary. And big pharma rejoices!
People with adrenal insufficiency need the replacement dosage, for what their body is not producing. www.nadf.us/uploads/1/3/0/1/130191972/adrenal_hormone_replacement_protocol_and_quick_guide_9-30-21.pdf
www.nadf.us/primary-adrenal-insufficiency-addisonrsquos-disease.html
Never ever advocate for yourself all that gets she was a script for an antidepressant in a psych diagnosis in your chart. Always have an advocate on the phone or with you never speak for yourself always have someone else speak for you. It’s OK to speak a little bit but you’re not gonna get taken serious if you self advocate. As you say in your story, you’re stupid doctor just gave her antidepressant. Didn’t give a crap about what you were saying. nobody should ever be taking psych pills until all physical illnesses are tested and ruled out.