I just spent 5 days in the hospital and secondary adrenal insufficiency is my suspected diagnosis. I was in a crisis. I live in the US & the doctors never thought of this. I found it as a possible solution while they were scratching their heads. They did the tests & were positive. I go next week to the endocrinologist for a repeat of those tests, just to be sure. But they already put me on the treatment & I'm feeling so much better!

@christinabellamoore

16 күн бұрын

well done for diagnosing yourself! Can I ask, what tests did they do to diagnose Adrenal Insufficiency please? xx

@MrsABC7997

3 күн бұрын

@@christinabellamoore it's a cortisol test.

@christinabellamoore

2 күн бұрын

@@MrsABC7997 thank you x

I have complex ptsd ánd secondary adrenal insufficiency which makes the situation extra complicated. So prone to anxiety from stimuli such as sound it will often create a shortage of cortisol. Too often to take extra hc every time. The endocrinologist fears my adrenal glands will stop working all together. So it is a constant juggle between taking a valium of some sorts or choosing more hydrocortison. The daily exhaustion could come from either of these diagnosis... it is not an easy thing to live with. Thank God I live very close to big hospital! 😁

@JustineCooksVegan

3 жыл бұрын

I hear this! I have adrenal insufficiency as a result of adrenalectomy from cushings syndrome and could not handle any extra stimuli for years, would have update! I started getting to the root cause of my health issues, went plant based etc and no I can tolerate soo much more. Drinking celery juice every day has helped me a lot :) Wish you all the best with yours!!

@aqpauraqahsoak7371

3 жыл бұрын

Can you please elaborate? I have PTSD since childhood.

@GewoonelsJustels

3 жыл бұрын

@@aqpauraqahsoak7371 Although not officially recognised bv Endocronologists people started to believe that due to long periods of stress the adrenal glands can get exhausted. My PTSD also stems from sexual abuse in my childhood. You can look up information about exhausted adrenal glands on the Internet.however, there is no cure and extra medication is needed when the diagnosis of adrenal gland insufficiency is made. I hope that answers your question.

@monaortiz4484

2 жыл бұрын

What caused your adrenal insufficiency?

@GewoonelsJustels

2 жыл бұрын

@@monaortiz4484 They are not sure. The Endochronologist says it is from medication such as asthma medication. But the lung specialist says I did not get enough of it to create this problem. So I think I have adrenal gland fatigue, so - the lung specialist. But it is not yet officially recognised. Not yet anyway.

You explained all this quite well! I have the same as you, linked to the same eye condition. I take almost the same amount of medication for this as you, but without the 5MG in the afternoon. It's kind of interesting, I took none regularly when I was very young, but as a teen they put me on 10MG then as an adult added the 5MG in the evening. I remember that shot ... and how much it hurts ... I think I only needed it like once, though. I tend to get stomach aches or, more recently, head aches. Funny, took me like 28 years to link those to stress and low levels. Anyway, it's nice to see things like this given some talking space.

Thank you so much for being helpful!🌹

Thank you for making this. This was extremely helpful and insightful

This was excellent information. Thank you for making it.

Hi Emily Great video x 😊

Fantastic explanation!

You have no idea what your video means to me! Thank you!!

A great explanation, we love the Harry Potter reference! Thank you for raising much needed awareness.

Thank you so much! This was so informative and helpful 😊

Very insightful video for a newbie to AI. Thank you

Happy Wednesday hun I love the Harry Potter analogy you should defo do more of those Have you thought about giving talks about this I can see you packing out a hall to guide others on how to manage better but that being said I suppose a KZread video like this one can reach more easyer I guess Have a wonderful day my sweet xoxo

Very helpful, thank you 😊

Ty so much. My son has ONH and was just diagnosed with secondary adrenal insufficiency and this really helped put my mind at ease!

This video taught me more about my own illness more than any other doctor. I really have to thank you. I did wonder what to do in a crisis when you dont have steroids? I was lost in the system by endo and now I'm in fear of crisis constantly which doesnt help my levels and no one will get me any answers unless I'm in crisis, but I also have had crisis once and thats when I was diagnosed.... so i'm a weird case. Heh.

Hi love!! Loved you're video, really informative but loved the HP reference :). I have adrenal insufficiency too and try to raise awareness, I have an IG page for it...its awesome to see more videos like this on here! Wish you all the best! You also inspired me to create more content on my channel soon, our disability can't stop us!! XO

Thank you and God bless!!

I absolutely love this video because I have hypopituitarism and I've never saw anyone else who has!!!!! I feel so happy!

@Anna-dl3ys

3 жыл бұрын

I have have it. Not fun and not easy to explain to anyone.

@franchesqua-levi

3 жыл бұрын

@@Anna-dl3ys exactly...it's horrible if you forget to take your hydrocortisone in the morning

@aleksandralazareska4575

Жыл бұрын

İ have it you are not alone

I also have adrenal deficiency, I have the emergency injection and Medic alert bracelet, what I did not know is the app, thanks for this video, I now have the app on my iPhone , thank you

Thank you for all the info. I have secondary adrenal insufficiency. I just got my shot with 50mg hydrocortisone. And ordered medical bracelet. I take 20 mg when i wake up and 10.5 around 2pm and 5mg around 6pm. So it's not close to bedtime to where it doesn't keepe up at night. Bless this video.

10 years diagnosed, also hypothyroidism.

I did find benefits. Im having all kinds of symtoms of adrenal fatique. Tyfs

We revived the news I had adrenal insufficiency and during the appointment we left with so many unanswered questions they didn't give us much info and finding uploads like this make understanding this horrible illness so much easier

@hollydaugherty2620

3 жыл бұрын

There is likely to be a support group in your country and that is where you’ll want to look for accurate information!

Wow I take 10 mg in the AM and 5 mg at night. I triple my dose too when I’m sick, surgery, under extreme stress

@Lookfortruth7

3 ай бұрын

same

I have secondary and got my med bracelet at road id

Hello Emily.

What a wonderful, informative and easily understood video. Thank you so much for making this. I’m in the process of being tested more after having two low cortisol level tests. My endocrinologist thinks I most likely have secondary AI. I’m going to share your video with friends and family to help explain what’s going on with this new diagnosis. Thank you again. Stay safe at out there. 🥰

I appreciate yhe harry potter ref....

I too have SAI. What you say is all spot on except I do crave salt especially if I’ve been sweeting a lot. Lipping some sea salt as I type this. Love your video though. Very well made Emily. Thank you!

I would think that if one were wearing a bracelet that looks like jewelry it could be easily overlooked by medical personal in an emergency. The one you show just looks like a fashion bracelet with a charm.

@hollydaugherty2620

3 жыл бұрын

Exactly. You never want a medical bracelet to be confused for a normal bracelet. It’s happened to me. Needless to say, I got rid of that one ASAP.

My android also has a Medical ID section in contacts. It shows up even when phone locked as well. If I remember correctly from your previous videos adrenal crisis is actually life threatening as well if not treated quickly?

@fashioneyesta

4 жыл бұрын

Thanks for letting people know! And yes it can be, but I try not to think about that too much x

I had just had the ACTH and AM Cortisol test. Both are low. Is night sweats caused by it? I've also been having some pain where my kidneys are. Have a appointment with my doctor next week to discuss

@med_el

3 ай бұрын

How are doing now ..which treatment did you start

Can i ask you if you produce any of your own cortisol? Or are you undetectable in your cortisol tests.

@fashioneyesta

3 жыл бұрын

I’m not actually sure to be entirely honest, I think I produce some but not enough.

@myssakay

3 жыл бұрын

I’m SAI as well and my tests indicate that I produce very small amounts consistently. It is a flat line whereas a normal curve is high in the morning and lower throughout the rest of the day.

Do you have orthostatic hypotension?

@fashioneyesta

3 жыл бұрын

I’m not entirely sure to be honest, my consultants haven’t ever mentioned it to me

Hello beautiful! I also have SOD. And suffering from most of the symptoms and I am having a hard time finding the proper health team. Would you ever be interested in zoom calling me I’d love to meet another woman who also has SOD.

@grettagrids

Жыл бұрын

Brandi...i.have sod...acc..ehlers danlos. And a bunch of other diagnosis.

I have this. Miserable miserable way to live.

I have adrenal insufficiency, my face gets so swollen , every part of my body . Sometimes I feel my face is going to explote. I also have rheumatoid artritis. I have a 10 month old that doesn’t sleep I sleep 4-5 hrs every day I am do tired all the time.

@hollydaugherty2620

3 жыл бұрын

If your face is swollen your steroid dosing is off. Proper cortisol dosing doesn’t cause Cushing’s symptoms.

@janethzamora2897

3 жыл бұрын

@@hollydaugherty2620 I have purple stretch marks buffalo hump big stomach all cushing’s symptoms , but when they check my cortisol It’s not detectable . I am not producing any

@hannahspanna5557

Жыл бұрын

I have adrenal insufficiency along with many other health problems neurologically and endocrine etc unfortunatly. Im very tired all the time as have poorly controlled epilepsy and im on alot of medications for a number of health problems i have a pitruitry tumor but i have had since age 14 im 28 now and has come back 3 times. I have spinal fluid leaks and had blood patch procedures done unfortunstly my last didnt go quite to plan and been left with severe pain they think i have arachondinitos i was left on opiods the only thing in which helps my pain but i was left on this for a long time still am this can also be a cause of adrenal insufficiency over time long term opiod use in my case i was having issues with this prior but was stuck on opiods during covid and kind of left and still pushing for help as i dont want to be on them but its the only thing that gets me out of agony for parts of the day and night without it id not cope... my neurologist has done some mri and awaiting to hear back because the last scan he felt he could see things eith the thecal sac but the radiologist he wanted to speak to with this hasnt been in for ages then my scans got the all clear my full brain and spine ones which he said he knoes isnt right because of my brain scan at the other hospital im under for endocrine... the results from that... so having a hard time right now with getting help because our nhs is falling apart lately... But i have had low cortisol for a long time but was like borderline they stopped monitoring it a while back but then randomly did when i was unwell often the nurses didnt do the bloods at the correct time so although loe they said have to be at 8am... well we finally started getting then done as i been really unwell and we had a dr call out of hours and my levels had been coming back dangerously low she said and she told me previous levels in which were never reported back to us and i should have been started on medication a while back... Ive since started and been on them i had infection and we had to double up. I dont know why but since being on the medicagion when i double up to higher doses im getting nose bleeds... im very tired and weak headaches and dizzy.. I had my levels rechecked recently because the hospotal i go to sent blood rewuests down locally so we got them done. But then found out by consultant afterwards she sent them by mistakes she said my levels will always come back low now whislt on steroids and having cortisol levels checked whilst on steroids will not be a correct result. She said because the steroids replacement is alresdy there so even though its low im getting it from the hydrocrotsione tablets but she said we dont test levels again once on steroids... I dont understand it too much as have so much going on so much medication i have many health problems but my carer helps me because medication wise i cant cope anymore theres just so much stuff and different times and so much going on.... But yeah i dont know medically much on it im die to see my consultant in 2 months. But yeah with testing your levels if your already on steroids replacement for it ive been told levels will be low still but thats normal and ok as on replacement tablets for it but the steroids will effect the bloods results anyway... where as me and my mum thought great now im on it surely my levels will go up and we will know what my levels are and all is ok and working fine... but apparently thats not how it works... I have a few questions to ask them because of cushings too. Ive started to gain weight in areas but although in my face i think in general weight gain can happen on steroids? I was underweight so im not overweight im actually finally a healthy weight in general but i have gained weight since the medication especially since having to increase the dose to. But i have constant headache and nausea dizzy i feel so weak and tired... i had hoped some of this would improve as some i had prior or atleast felt similar and was hoping it would improve but im not sure maybe its nothing more than just side effects of the medications and not anything bad as in cushings or that the dose is off but i dont know its hard because i have a lot going on and alot that causes alot of stress in many ways to my body too. Im having a hard time with my other health problems to at moment and alot of stress too so i just dont know but i feel awful lately. Does anyone know if theres a way to check to make sure doses are ok or anything if cortisol blood tests whilst on steroids mean they come back low when on steroid use anyway? Still learning so not sure have a few questions for my consultant when i next see him/her but just so much going on its hard as when have more than one health problem and when have more than one that can effect eachother too it just gets so complicated and confusing. Thank you in advance for any help And hope you are all well/ as well as you can be as i know how hard things can get ❤ x

@hannahspanna5557

Жыл бұрын

I also have many of the symptoms you have said in your video. I told the consultant who called to put me on medication... but i said about the sweating and basically all the symptoms you have said she told me that sweating isnt one of them.but said i should just be feeling tired and weak which i do but with alot more than that like last few days been bad ive just gone down on the steroids as we doubled as i have been on antibiotics and had infection..but my headaches im so tired dizzy nausea sweating i just feel awful... but they seem to seperate my symptoms up and just say mostly get tired and weak and faint with it is the main symptoms but ignore the rest or they say it could be my epilepsy etc... ive had insulin resistance in the past which came when i got my first pitruitry tumor but ive had random blood sugar problems along the way things can be so random.. i get alot of infections too so its sometimes working everything out. The last few years have been the worst i know ive been struggling with this for a while and looking back at results we now have explains why i likely was so unwell during certain infections too. But no.one checked my cortisol but my levels were checked under another hospital and werent on the other hospital locally under their system... but i had surgery and got a bowel infection soon after which reoccurs on antibiotics use now so i have to basically try not to have antibitoics but ive recently just finished a course i didnt want to have them but my dr said now we have to outweigh other risks as my infection was turning nasty im getting worse and he said we need to treat the infection with antibiotics so we have done and its helped but i now have to hope i dont have bowel infection happen the last time it did was after the same antibiotics and during lockdown i ended up getting sepsis too because it reactivated/triggered the bowel infection so all over tooth infection i had to have antibiotics i didnt want to but had to and then unfortunatly it happened and i got it about 2 months after having antibiotics so im worried it will happen again as have had it happen 4 times now but will be having a procedure done if happens again to try and reduce the risks of it keep happening.. the dr couldnt promise.it not happening again as did last time but said have to treat this infection currently. And with how unwell i was getting i didnt have much of choice i was vomiting too and we didnt have the injections still dont gp trying to sort out training for it he said but consultant has emailed him saying i should still have inhection at home even without training of hoe to do injection they should be at home with me so i should be getting it where i atleast should have it on me as consultant said its important to have the inhection with me... i was unaware that vomiting within 30mins of the medication etc and vomiting in general meant really i should likely have the injection... we are learning though and know now whats needed in regards to that and when to get help but it took again for me to get quite unwell to find that out as not really gotten any support was just a phone call in evening and to my carer she actually said she hopes i make it through the weekend ok as cant get the meds to me as not local so would have to write to go and we get them monday but to call 999 if the following happens.... and say i need the steroid injection.... but ive had a phone call since and then a couple emails and the rest been with gp who basically printed out a page of facts and sick day rules which we alresdy now know off but they said about the injection again but my carer said to him again but she still doesnt have the injection. So im hoping we get that soon my consultant has emailed him saying he can do the prescription for it already so we have it as said its important we have it at home in emeregency... my carer is going to push again the gp we just keep getting theres not many drs on but she said thats ok its just the prescriptiom we need right now... Its hard as have to fight for everything i have got quite unlucky with some recent drs i have unfortunatly but i do think in general the health care is falling apart alot the things i hear and from my district nurses who give me injections monthly for other health problems and the ones who come out when im to unwell to go to the gp etc... alot are saying things unfortunatly i know its hard for drs and its been hard since covid but im hearing alot from nurses that certain gps are just becoming quite lazy. Our gp has a number to the endocrine team for calls to consultants directly for questions that was given when i was told.i need to be on the steroids and what i had... since my nosebleeds and specific symptoms and things happening my carer contacted my gp to ask and he didnt know the answers but felt its to do with either the steroids or the adrenal insufficiency but said dont know my carer asked if he could contact them.but he said might be easier for u to so my carer did and with everything he said and about the injection and reason i dont have it is because of no training thats when consultsnt wrote a note to him saying its important i have the injections and should already have them by now and he is still ablento write a prescription so this is at home with me so he wrote out the prescription order for him to order.... but just feel like have to fight for the basic help of things it is hard... I think where got so much going on right now to with my health its all just quite alot like since covid too things got cancelled i lost consultants that were really good My surgery was put on hold then i lost my whole team and now have a new team who have chucked me.on more medication instead and just dont really seem.to have a clue about my case and whats been going on nor about my previous surgery i already had... and i just feel like im back at square one where we know what was needed and everything eas going to happen and things being sorted then everything came crashing down on us when covid happened... but i know im not the only one as heard so many people when ive been in hospital.in simislr boat especially those with long term and multiple health problems like just be pushed aside and life come to a stop and no support help nothing but back to alot of suffering again... and its sad to see as im going through it personally myself to but many others too. Even my neurology team at another hospital the team arent coping and out right have said it i was in tears on the phone to him i broke down after 9 months just awaiting for scan results and he told me he would have them this time and i said u keep saying this but then found out mdt meetings werent even happening at one point and certain radiologists werent in then fill ins were there from other places thats when a scan got cleared yet he knew it wasnt clear so was meant to see the guy he was wanting to see and tell me my results finally and then he called snd i was in agony when he called so wasnt great timing but i said please tell me you have my results and when he said he hadnt seen him yet i just broke... Im shocked at times with the nhs but im getting use to it and sadly hearing it from many others too. But it certainly.doesnt help my life get any better and the stress etc.... and the stress is really not helping to as going through so much to have to deal with if it wasnt for my mum my carer id honestly struggling to keep going how it is already but if i didnt have her id not cope at all and my medications everything 😔 x

Adrenal insufficiency isn’t it just called cah

@hollydaugherty2620

3 жыл бұрын

No, it’s not. CAH is a specific condition. Adrenal insufficiency can be caused by different diseases or conditions. I do not have CAH. I have Addison’s disease which causes adrenal insufficiency

Why do your eyes move so much? Are you reading a script?