E36 - Symptoms and Diagnosis of Addison's Disease - What you need to know!
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- Опубліковано 22 лис 2022
- If you are going through a possible diagnosis of Addison's Disease this short episode is for you.
I go over the general symptoms of Addison's Disease, how it is diagnosed and the MUST-HAVE BLOOD TEST added to your blood requisition.
I also share with you my personal symptoms that developed over 20 years before I was diagnosed and the symptoms my daughter is currently experiencing.
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DISCLAIMER: The information from THE PICKLE JAR represents the experiences of the host Jill Battle and the individual experiences of each guest. No information is intended to provide or replace the medical advice of a medical professional. The host or guests are not liable for any negative consequences from any treatment, action, application or preparation, to any person following the information from the podcast.
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I was just diagnosed with Addison's Disease. Only came home from hospital today. I'm 70 yrs old. I feel so much better being on my meds now. I had all the symptoms listed on the charts except no salt cravings. I think that's because my whole life I've been a heavy salter in my food. My family always fussed at me for using so much salt. My normal blood pressure is always low, it varies from 70/40, 80/50, sometimes it might even be 110/60. It's never the same. I freeze all the time. Have lost weight down to 95...normal used to be around 125-130. Hair is falling out. Brown pigmentation on my ankles and shins. Last Thurs my PCP asked if I'd been to a tanning bed. No, never been to one. She said my back and bottom was brown. All my blood work as been getting worse and worse. Before hosp admission last Thurs night, my potassium was 6.8. They told me at the hospital that was "widow maker territory". Scared me to death. They slapped EKGs and heart monitors on me too quick to talk about. Started pumping luquids of some sort in me thru IV. Had to drink a chalky drink twice that helps bring down potassium quickly. Once the hospitalist got my blood work back, he fully diagnosed me with Addison's disease. Started me on medications in the hospital. And sent me home today with Hydrocort and Fludrocort. Another symptom I've been having a lot was nausea/vomiting and loss of appetite. Lots of muscle weakness, low back aches, a dead sleep for 10-12 hours. There's times I've slept for 15 hrs. I'm a night owl so always contributed my long sleeping hours to that. Also I have occasional fainting spells. Since I've been getting my meds in the hospital, I feel better than I can't tell you how long. I have felt draggy and weak for years. Always figured it's because of my old age. I also have severe Hashimoto's thyroiditis that's near impossible to keep regulated. The hospitalist said that may be partly due to the Addison's as well. As far as I know, no one in my family has ever had this. My daddy died at 68 from a massive heart attack in his sleep. I remember he didn't have hair on his legs just like me. Thought mine was due to thyroid disease though. Maybe he had Addison's and just never diagnosed. Glad I found your channel! Thanks for your information on your journey with Addison's.
Oh friend...I am so sorry bu thankful you have your answers and are feeling better. Wow...maybe your dad did too! Thank you for the comment and for watching my videos...I hope they are helpful!
Thank you. This was very helpful information!
Glad to hear it was helpful...thank you for the comment and watching ❤
I also had/ have nausea ,no appetite. Blurred vision. Fluid retention. And all the same symptoms you mentioned.xx
Not diagnosed but had a low cortisol and found your video. Your story of your dad and my dad could have been twins. My dad was bronze like a penny. He had no leg hair. I remember him pouring salt on an apple. He died at 56 in an ER lobby waiting to be seen. He was never diagnosed, but I wonder now. My symptoms, and my recollection of the symptoms that he had sure do match up.
Oh I am sorry friend....that is heart breaking...I can't believe it...Please fight for your answers and if you need anything please reach out....we are all here for you.
Thank you thank you so much for this❤
Thank you for watching and the comment friend ❤
My ACTH was 14.8 reference range 0-46 and cortisol 225.65 reference range 240-618 but I have a lot symptoms that points to secondary adrenal insufficiency and my symptoms all started when I had a sever asthma attack six years ago and I was given six tablets of prednisone for six days without tapering and 250mg of hydrocortisone
@@estherekhator27 yes look into that. All the best. I hope you get answers and feel better friend
Unable to regulate heat body temperature. No body hair. Loosing head hair. Loosing wieght. Exhaustion. Low bp. I never had salt cravings. More sugar cravings. I had all the cardio issues too. Xx
cardio me too..still do...and yes sugar...I lived on marshmellows and chocolate frosting
please explain more on the hyperpigmentation and where it was? It sounds personal but I have something similar going on and I'm wondering if it's what you're talking about.
Hey there....hyperpigmentation occurs mainly with primary Addisons. ACTH from the brain increases very high trying to stimulate the adrenal glands to produce more cortisol. There abnormally high levels of ACTH bind in the cells in the skin that cause hyperpigmentation. Often this is first seen in scars, more sensitive areas of the body like gums, palms hands and eventually the entire body. If you suspect you have hyperpigmentation please consult a dr asap...hope this helps you on your journey.
I pickle jar, that juice sometimes is just what I need
Agree friend ❤️❤️
Oh yes terrible depression. Must have been so hard looking after twin girls Jill.❤❤❤
Yes a lot was going on...but my kids keep me motivated too...exhausted but motivated
always low or low normol sodium on blood tests low normal cortisol and slightly elevated acth. symptoms are weight loss, low blood pressure, weakness, fatugue, now low blood sugars ect. scared of acth stim test
Good luck friend...you need answers and to be safe. Keep us posted on your results...be safe.
I have all of these symptoms. Pretty sure I have it. Please recap all the tests I should ask for that would completely rule out Addison's? Im going to ask my Doctor to test me. I've had severe, severe salt and sugar cravings since I was little and absolutely everything you stated. Thanks for sharing your story. ❤
Hey there...common is blood cortisol, potassium and sodium...I would also recommend a blood ACTH test and then a ACTH stimulation test. the ACTH test in important....this is for primary addison's...secondary adrenal insufficiency may require other tests. Please be safe and keep looking for answers
@@chronicallyfit_withjill Yes definately ask your Dr for morning cortisol blood test. And all the tests Jill said.
I have no idea untill i see my Endo if had any abnormal pottasium or sodium blood tests. Or antibodies.?
The short synacthen test. Will show clearly if your adrenals are working or not. ? Drs dont very often pick the symptoms up of Adrenal insufficiancy?. Or realize they are all connected? As Addisons is rare.? So stand your ground with your Dr. Tell them your symptoms. And ask to be refferred urgently to an Endocrinologist. And have a early morning cortisol blood level test. While you are waiting. If you Adrenals are not working. Your early morning cortisol will be low. ( proof) At least you will find out one way or the other. Good luck.x
Thanks for this video! I am experiencing these symptoms and trying to figure out what’s going on. I don’t have hyperpigmentation though. Is there adrenal conditions that aren’t quite Addison’s or could this be early stages?
I hope you found the video helpful. If you haven't yet I would look into testing and discussing with a doctor. Personally, I had symptoms for years before I will 'sick' enough for a dx. I would educate yourself on how the disease progresses for symptoms and talk to your doctor about the possibility of testing. Anything else please message me
I had painfull and weak joints too. And unable to cope with stress.x
my joints mainly my ankles were so bad in the mornigs!
@@chronicallyfit_withjill yes i used to wake up feeling 100. With all my joints aching...Better now I am on hydrocortisone...But still having symptoms? ..How long did it take you Jill to get your HC pills dosage right? I know you have the pump now.xx I am ok in morning 10mg. 5 hours later 10 mg. Then i just conk out about 4- 5pm.!! Get blurred vision. Cant bear to watch TV. Too much noise orsound. So go to bed between 6- 7pm...!! Maybe i need another half tab to keep me going through the evening??? I dont mind going to bed early in the cold dark winter. But i want to have energy in the light warm summer evenings?
I will speak to my Endo. But i think its up to us to do whats best for our bodies wirh the meds? As we know how we feel. And when our bodies start to shut down...as run out of cortisol...? Its all a learning curve? Did you ever get your appetite back Jill? I never feel hungry. Just eat because i know i need too. ? I try and eat healthily. But those cravings. I just think. Oh let my body have what it wants.🤣🤣🤣. Then regret it...🤣🤣 one day all i eat is veg and fruit. The next choccy and bread.!!
Do you have a quick cheat sheet on normal levels of acth/sodium/potassium etc.
Sorry i dont. And depending on countries they may differ as well
How do you get on for people who have pre menopause and Addison
That im not sure. Need medical professionals help. Very individual i would think. ❤️
I have recently had blood work and a cortisol level done and it was all pretty normal but I still feel horrible low blood pressure,extreme fatigue, brain fogand many other symptoms. Could I have addisons and the cortisol blood test just not measured it. It was not acth or what ever it is called
My cortisol, sodium and potassium were all still normal on blood labs...did they test your blood ACTH...that is a good test to do...mine was very high. Then we did the ACTH stimulation test...don't rule it out if you feel it maybe Addisons!
@@chronicallyfit_withjill they did not test acth at all just cortisol
@@user-ut9zg4nr6i I would request the blood ACTH test to start...my cortisol, sodium, potassium was normal but my ACTH from my pituitary was 30 times to high! My body was fighting so hard. After this we did the main ACTH stimulation test
Have u checked ur iodine levels
Usually always being cold is a sign of iodine defiency
I may not have full blown Addison but believe I have adrenal insufficiency...doctor's won't listen to me. Do u have any suggestions?
Hey there...so you have not been diagnosed then...I would suggest if not done yet blood ACTH test and possibly ACTH stimulation test and to consider primary and secondary adrenal insufficiency testing. Monitor through symptoms and blood work (acth, cortisol, sodium and potassium) at least with your health care team. MRI are often helpful on the adrenals and the pituitary. Hope that helps a bit...keep fighting and trust your instincts!
@chronicallyfit_withjill Well I have like twenty plus other diagnosis so it's more complicated than that. I've been looking for a unified diagnosis for many years. I think I might have something called auto.Immune polygland dealer syndrome type two. Adrenal insufficiency is part of that syndrome. I will look into the AC.T.H stimulating test. Thank you for your reply. I have felt like adrenal insufficiency problems for years but doctors don't care...I've even shown them where at the mist stressful time in my life....my cortisol had spiked and then went down to hardly anything at all....still...they won't even consider further testing....is there an inexpensive panel I could order on my own?? I have been unable to work for years...and also unable to collect ssdi for years...mainly bc I am under age 50....also what is the best way to test cortisol? Serum? Urine? Saliva? Combo? And besides cortisol and acth and now acth stim and na and k what else should I have? I regularly have cmps and have intermittent hyponatremia and have had low phosphorous too...many of my hormones are affected by whatever...testosterone...shbg....lh....fsh...tsh...etc...
When the adrenal insufficiency is so severe and cortisol levels so low, how would an individual get out of bed early in the morning and drive 45 minutes to the hospital to undergo the testing? It would be an impossible task for me. I cannot get out of bed until around noon. Any thoughts?
Hi there..I personal have gone to hospital and my blood work (when taken) indicate no cortisol detected. Sorry to hear you are struggling...I would suggest asking for dosage changes from your medical time, trying different steroids or trying a different timing of your meds if you haven't already. Best of luck friend...keep trying! You will get there.
@@chronicallyfit_withjill Thank you for your response. I am not sure I understand what you are suggesting. Would it be possible for you to clarify? I am most interest to find out if the ACTH test can be done later than 8:00. Why does the test have to be done exactly at that time? Thank you for clarifying.
@@SoBelle100 hey there...I think I just meant I agree it so very hard on low to zero cortisol to move...I did it once drove to the hospital and I think it was a miracle I got there...I had extremely low potassium and they said I should have had a heart attack..scary but sometimes the body does amazing things.
As for ACTH test...I think you mean the blood test I think it need to be done no later than 8 am since they correlate it with morning cortisol levels that peak around 8 am. BUT is you have primary adrenal insufficiency an ACTH (in my opinion) could be taken to see what the adrenals are doing through out the day. the ACTH will be always high!
@@chronicallyfit_withjill Thank you so much for this clarification. I will talk to my doctor to see if doing the ACTH could possibly be done around noon. I live in a city where I do no know anyone and I do not have family so I cannot take the chance of trying to get up at 7:00 am for a 8:00 blood draw. I have already been in an adrenal crash since the end of April and being alone is definitely hindering my healing. But life is what it is so I just focus on one day at a time. Thank you, again, and I hope you continue to make positive progress on your health journey.
I went and got my yearly physical. My cortisol came back a smidge below normal for 8 AM when it was taken. My sodium a potassium were fine. In the last couple months, I’ve been dealing with nausea and loss of appetite. My face has hyperpigmentation as well as the outlines of my lips. I’ve always loved salt. As a kid, I would pour it into my hand and lick it. I’m getting follow up blood work in the next few months because I was breastfeeding at the time. I’m curious to see what mg labs will say.
You sound just like me ❤️. How are you doing? Keep fighting for answers ❤️
@@chronicallyfit_withjill I just got my acth back. 118 with a reference range of 7-63. I’m still waiting on the rest of my labs.
My cortisol, Na, and K came back normal.
I still dont feel well on hydrocortisone Jill? Tabs? Not sure if dose is correct yet? Do you ever feel well with Addisons? Jill.xx
Ups and downs..but look into getting your meds adjusted...the pump is a BIG difference for me. I find dealing with stress levels a HUGE help. Keep fighting friend.
@@chronicallyfit_withjill Thanks Jill. Yes i wish we had the pump in the UK. I am very good at not getting stressed. I had years of training with cfs/ ME. Of calming my nervous system down... I cant se the point of worrying or stressing. Total waste of time and energy. Nothing is more important than our mental or physical health is it? Xxx
@@sandrawheeler1521 Hey there...the pump was actually developed in the UK to been used for solu-cortef. Definitely an option for you!
@@chronicallyfit_withjill i can ask. Its not being used in the the UK? Just trialed in one area of the UK???
Greenstone brand Big Difference