I'm in for emergency stabilisation via iv since last night. Earliest possible release is Monday. Steroids for the rest of my life. But HC not prednisolone thank god.
It is mostly a huge relief. It at least part explains the way my asthma has flared over the last few months. And why I have felt so ill!
They'll still check out aspergillus and cf and a1ad and bronchietsthingy, and look into ige levels too. But you couldn't possibly expect to have well behaved asthma with untreated Addison's, so whatever the details I can expect it to be better.
In many ways the leap from type 2 brittle asthma to addisons plus t2b asthma is small in terms of what I need to deal with. I will have to track blood sugar and pressure and fluids in and out, plus peak flow. I'll have a strict meds routine. When I feel at all poorly I'll have to keep an eye out for early signs of a flare. There will be a set of dilemmas about when to see gp, go to a&e or dial 999. When it can wait and when it's an emergency. When to self medicate and when to ask for help. Plus the need to be mindful about what I do.
I already live with a condition that can kill if not respected.
Not that different except in one key area...
I am already experiencing the difference in attitude... as a non-wheezer it sucks to have to justify yourself. My cortisol levels are super low so I'm not borderline, and I have extra complications in other hormones also being naughty. Medics are taking it super seriously.
Thank you for so much support to my alter ego. Especially those who recommended St James's. They are amazing.
So sorry to hear you have Addisons to contend with too. It must've come as a shock to you. I appreciate that with Brittle Asthma as a primary diagnosis, it's just another thing to contend with, but it throws a whole lot of worries and depth into normal situations.
Do you know if its primary or secondary?? Is it caused by steroid use??
My daughter is Brittle Asthmatic and was diagnosed with Adrenal insufficiency/Addisons 18months ago. She's only 4 now!! It was an utter shock and a very scary time. All the 'what's ifs' surrounding medication threw me into a complete panic!! I worried when I needed to give emergency doses, when to call for help, and most of all, how on earth I would keep her out of mischief where she might get herself hurt. Such a worry!! We too were shown how to do blood sugar monitoring, IM injections, general sats etc. It all seemed so daunting at the time.
I have to say though, despite worrying daily as to her colour changes, her temperature, sugars, and chest, it has got easier. We do what we need to do with the meds/monitoring and then we get on with the day.
She had lost a lot of weight by the time of diagnosis but now, 18mths on, it's all back on. She also is able to tolerate the cold slightly better too.
I hope you too see a difference in your health now they have found this. Maddie still has her thyroid levels checked often as these are often all over the place but apart from that, touch wood, she is mostly stable.
Sending you my thoughts, it does get easier. Take care and let me know how it goes xx
Do you know if its primary or secondary?? Is it caused by steroid use??
Primary. On the synacten test after 30 and 60 minutes my adrenals had barely showed up - they said my post-stimulation test levels were low enough that they would have been the usual starting point for the test (pre stimulation).
But my pituitary is misbehaving too. And there is 'something unique' on my pit-MRI. My endo was taking that to see a neuro-radiologist friend of his yesterday and said that if he also hadn't seen it previously they would both send it out further until they found someone who recognised it.
My feeling and that of my consultant is that it's probably something that was waiting to happen or already present at a low level, precipitated by inhaled steroids - I've only had less than 10 bursts and one mid-length (5 week) course of steroids in my life. Main consultant said there is a theoretical possibility of recovering some adrenal function over years, but then the other consultant and the specialist pharmacist both said they'd never seen anyone with my numbers reduce their HC requirement below 15/day.
I've still to get a load of test results back to try to narrow it further, but other than perhaps adding in the mineral steroids they've told me it makes no difference to my treatment.
Cx
im glad you have an answer at least - even if its not an ideal one, and im glad you have finally got the attitude that all doctors should have towards all patients!
Will you take HC tablets, or injections (or tabs for everyday, injections for emergencies?) glad its not pred too! is HC a bit nicer, or just different?
Hopefully it'll make all the difference with your lungs, i know someone who got quite a bit better once their addisons was sorted!
Im sure you'll quickly get to grips with all the new medical stuff, i cant believe how much more i understand about asthma than i ever did a few months ago - i swear, i know more than some docs seem to!(obvs i could ONLY treat asthma - but still!)
which ward are you on? Its a shame, i assume you wont be on resp but there is such a lovely team on there at jimmies - esp on the resp HDU! Im at jimmies on tuesday! How weird
let us know how you get on - hopefully you'll be feeling much better soon!
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im glad you have an answer at least - even if its not an ideal one, and im glad you have finally got the attitude that all doctors should have towards all patients!
Will you take HC tablets, or injections (or tabs for everyday, injections for emergencies?) glad its not pred too! is HC a bit nicer, or just different?
Hopefully it'll make all the difference with your lungs, i know someone who got quite a bit better once their addisons was sorted!
Im sure you'll quickly get to grips with all the new medical stuff, i cant believe how much more i understand about asthma than i ever did a few months ago - i swear, i know more than some docs seem to!(obvs i could ONLY treat asthma - but still!)
which ward are you on? Its a shame, i assume you wont be on resp but there is such a lovely team on there at jimmies - esp on the resp HDU! Im at jimmies on tuesday! How weird
let us know how you get on - hopefully you'll be feeling much better soon!
Thanks soph! The acute med wards here are ace too thank goodness, given that I'm going to need them next time I have a pukey bug.
I'll take HC tabs but will have an injection kit too. I'm going to finally out for a saline and glucose iv kit too, for when we get cut off.
I think apart from the difficult access to medical care I'm not too daunted. If I hadn't come down on thurs to a&e I would have had to be choppered out on Friday as our road is totally blocked. Scary.
I'm hopeful for a Monday release but it wouldn't be a shock if it was Tuesday - ill let you know soph, and if you fancy a coffee, that'd be grand!
Emily, thanks - I have a friend with a child who was dxd at 3 or 4 and seen their struggles so I really feel for you.
Initially I thought I wasn't nearly ill enough but after my fifth dose of iv HC on day 2 and 5 liters of fluids I'm like a new person. Well, one last seen in 2011!
The part that I feel unsure about is knowing when to adjust and when to seek help. We are in a very remote area so will probably want iv fluids at home too. Our village is cut off regularly in winter and if I had a crisis just after dark we might need to manage it til day light.
I'm compiling a list of questions for my gp and cons. Like I get frequent migraines - assuming they still happen, how do I treat if I do / don't vomit.
Best of luck with Maddie. I'm a bright adult who used to be a science researcher and can build a custom app to help me manage it all and share that info with my gp and endo docs, and I still feel overwhelmed! I can hardly get my head around how you cope.
I am hopeful that when my fluid and sugar and electrolyte balance is better then my lungs will be less grumpy!
I'm with Soph - not good that you have Addisons but I would say if you are having problems it's always better to know why so you can get on top of it.
Very glad to hear that it's being taken seriously and that they're helping you work out a plan. Crossing fingers that controlling the Addisons does help control the lungs - I'm guessing it explains your issues with pred? Would you still be able to take pred if it's needed for the asthma eg short course?
Hi P, yup, the relief outweighs my concerns about three to one.
I believe pred has unmasked it, but my symptoms of mild addisons go right back to childhood and I've had mulitple hormone issues since birth.
As to if/when I use pred in future, its one of many qs on my list! Like asthma, Addison's seems to have individual variations which will take time to explore.
Lots to take in!
C
Sorry to hear yohu have addissons to contend with also but really great that you know what it is and are feeling so much better. Re hc versus pred. Have been told pted is a glucosteroid and hc is not so pred has more side effects especially re steroid induced diabetes. Hugs
Rose xx
yeah thatd be nice do you know which building you're in? If its the same building as the resp wards J9-12 i think then there is a coffee shop downstairs and theyre usually pretty good about letting you go down if you ask! Let me know monday what you're doing
how are you feeling now? are you finished with the IVs and stuff? onto oral HC already?
Can't believe the chances of this but I spent half my life in St James with Brittle asthma type 2 and Addison's.
Only just caught this post whilst nebing at home.
I have had Addison's for only a year and it does take a bit of getting used to but I have felt so much better. Like you I did not think I was that ill until they started the treatment.
I'm assuming your talking about meeting in the Costa coffee in the Gledhow wing of Jimmy's, on Monday. Due to pleurisy I'm on reduced hours at work so only working the morning tomo, if you want I can come over to Jimmy's and talk more about how I have dealt with it all and just generally chatter.
In box me if you want to meet or need more help.
Hope everyone in Jimmy's and other hospitals are feeling better.
Amanda X
Soph & Amanda you are both brilliant, I'll update here as soon as I know if I'm getting out it staying in. Still on 200 mg HC iv, they delayed the dose this morning and I got migraine, major shakes and couldn't stop crying. Bonkers.
On the HC my asthma is stable to all sorts of my triggers.
I just got attacked by another patient who has dementia and threw a liter of Orange juice at me. Normally even trace orange puts me in serious trouble. I did have a bad attack and hives but didn't even need a neb let alone Epipen.
Unfortunately I have likely broken my wrist in falling because another old dear pushed her trolley out and trapped my drip. But in the past broken bones have always made me spew. On the HC it just hurts. Win!
I want to stress that it was nobody's fault, just a perfect storm. Staff have been fab. I'm now on ward 24 but that was already planned. What a day!
Oh my goodness, sounds like you've had a horrid day!! How did you cope with breaking your wrist?!?! That's just awful!! Did u feel stress to the fracture?? We were told an injury like that would need us to administer emergency injection to Maddie, something that terrifies me just thinking about it!! You are coping brilliantly!!
Maddie is on Pred as opposed to HC. They were hoping to wean the pred and then transfer to HC but her Asthma hasn't been stable enough yet (in 2yrs!!) in order for that to happen!! We live in hope!!
Thinking of you and find it so uplifting to hear you so buoyant after a diagnosis that made me crumble to the ground. Well done you for being so courageous.
Oh my goodness, sounds like you've had a horrid day!! How did you cope with breaking your wrist?!?! That's just awful!! Did u feel stress to the fracture?? We were told an injury like that would need us to administer emergency injection to Maddie, something that terrifies me just thinking about it!! You are coping brilliantly!!
Maddie is on Pred as opposed to HC. They were hoping to wean the pred and then transfer to HC but her Asthma hasn't been stable enough yet (in 2yrs!!) in order for that to happen!! We live in hope!!
Thinking of you and find it so uplifting to hear you so buoyant after a diagnosis that made me crumble to the ground. Well done you for being so courageous.
Lots of love. Xx
Thanks Emily, yes, it was pretty awful! And it was my birthday!
I've broken my wrist a few times before so I knew it was busted as soon as I noticed it was injured - for the first 20 mins I was just dealing with asthma and the allergy side. To be honest I'm hopeful that it's *only* a scaphoid break as it is several times more swollen and distorted than ever in the past, and my experience is that a clean break is quicker to heal than ligaments and tendons.
Unfortunately the fracture folk are at Leeds General Infirmary, not St James's, so bizarrely I've not yet had it looked at properly - two general med Drs and my own GP all say it's broken but I've been transferred to fracture clinic at my nearer small hosp for follow up. A radiologist has confirmed that any fracture is not displaced, but that's all.
I am sure if I hadn't been on the IV I would have just passed out. They managed to screw up my HC AGAIN the next day when they decided to switch me from IV to oral, and stopped the drip but hadn't actually got any HC tablets on the ward. 18 hours later I was in total steroid withdrawal as well as having additional complications from super low potassium. Ridiculous, but the problem was that I'd been moved to a gynae-day-surgery unit that happened to have a bed, and none of the nurses knew anything about it.
I've now got printed out the various wonderful ""How not to kill this patient"" leaflets for Drs and Nurses. I feel quite confident that with those in hand all will be OK even in our local crappy A&E.
I think the reason I feel so buoyant is that life has been so chaotic anyway that at least this diagnosis gives a tool for reducing the chaos! Don't let me fool you, I have a long list of anxieties, most of which will only get addressed the first time those situations happen, but on the whole I do feel positive about it. I can't imagine I would feel positive if it was my child though! Crumbling would definitely be high on my to-do list.
Wishing you and Maddie well - I hope she gets some stability soon, even on the triple dose (I'm on second level sick-day-rules as I have phlebitis from a canula that had gone bad and wasn't removed for several hours after I had pointed it out) I feel less toxic than on pred, so I hope that happens for you guys asap.
Cx
Lots of hugs for you. Like others have said you're doing amazingly well. xx
Im being noisy but what symptoms did you rock up to ED with?
Apologies for delay responding. Yesterday was awful! Still here. Home late weds or early Thursday. Would love to meet either of you. Tied to waiting for docs. J24 is a gynae ward that has spare beds. In bed 21. x
Hi sorry your still in hospital put its good to get right before you leave and its still snowing outside so getting about is hard at the moment.
I'm heading away for a short break over Easter but would love to meet up with you when I get back. Not sure where everyone is based but I drive so can come your way or meet in Leeds.
Have you been given an endro Dr yet I'm under Dr.Ward?
One bit of advice I would give you is to see your GP and get them to learn about Addison's and the difficulties it can cause when under stress. I did this and have a wonderful GP that helps me decide when I need an injection or double the meds. They are great as like you and most of Yorkshire getting to hospital can sometimes be hard but getting the GP to come to the house is easier.
Keep strong your doing very well, its a hard diagnoses to start with but hopefully you will start to feel so much better. I found getting used to the new meds three times a day without fail was easy to get used too, and you soon learn how your body feels and when you might need extra.
I hope you and Soph are getting better and would love to meet both of you some time soon.
All the best and happy Easter to everyone.
Amanda
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Hi sorry your still in hospital put its good to get right before you leave and its still snowing outside so getting about is hard at the moment.
I'm heading away for a short break over Easter but would love to meet up with you when I get back. Not sure where everyone is based but I drive so can come your way or meet in Leeds.
Have you been given an endro Dr yet I'm under Dr.Ward?
One bit of advice I would give you is to see your GP and get them to learn about Addison's and the difficulties it can cause when under stress. I did this and have a wonderful GP that helps me decide when I need an injection or double the meds. They are great as like you and most of Yorkshire getting to hospital can sometimes be hard but getting the GP to come to the house is easier.
Keep strong your doing very well, its a hard diagnoses to start with but hopefully you will start to feel so much better. I found getting used to the new meds three times a day without fail was easy to get used too, and you soon learn how your body feels and when you might need extra.
I hope you and Soph are getting better and would love to meet both of you some time soon.
All the best and happy Easter to everyone.
Amanda
Thanks Amanda, I'm definitely up for meeting up in future! I busted myself out last night.
Soph and I put the world to rights. Her Asthma Doc had just been talking to her about adrenal suppression and changed her meds - my endo is Dr Murray and I think it's a topic they're generally interested in looking at right now.
My GP is amazing. She's newly qualified and really, really good. She'd already read up loads about it because of me developing DI, which is what got the initial urgent referral in to St James's. I think she suspected Addisons already, and by the time I saw her today she'd done loads of extra research. She is also just one of the nicest doctors I've come across! And she's into the holistic approach - what's going on mentally as well as physically, and all your physical symptoms - rather than 'bring one complaint per appointment' stuff.
I'm going to see her weekly for a while as there are so many things to sort out, and have my K, Na, Ca etc monitored.
I've got loads of Qs that I'd love to ask you - about when you add in more HC and stuff. I got a glucose meter and BP monitor for my birthday as I have aspergers too and one of my main deficits is that I don't notice when I'm cold/hungry/tired/thirsty/ill etc until it's really extreme.
Mostly I now feel sane! Luckily my partner and my GP have never once even hinted that they didn't believe I was ill, but the hospital have made me feel like I have munchausens at times. My cortisol was 43 at 9am both times it was measured last week (Weds and Fri morning). If I'd become ill or injured myself over the weekend the doc says I would have been in a coma at best. Scary. Especially relying on the Air Ambulance for rapid response.
I am a bit freaked out about the idea of the first time I have to go to hosp / inject myself, but having all the 'don't kill this patient, idiot A&E doctor, thanks' bits of paper is a big reassurance! I'm almost looking forward to meeting with my local A&E about my complaint from the last 2 times they've treated me. On both occasions they denied me HC and diagnosed what I now know was cortisol crisis as a panic attack / anxiety. Idiots.
I'm going to build some software (that's what I do) to help me monitor and data-mine all this stuff. If you'd like to give it a whirl I'd love some extra ideas. I need to monitor my fluid balance (I have DI as well), glucose, BP, temp, peak flow, mood etc as well as some other girly bits (bleeding, PMS, pain etc) as my entire endocrine system is also naughty. And take meds. And remember to eat. And track what I've eaten, and particularly how much potassium I've taken in and which PRN meds I've used etc. So - let me know what you need to track!
SO glad to have others to talk to about it. Have a good weekend!
Cx
What a horrible birthday! I hope you celebrate on another day to make up. Belated happy birthday though.
Really glad to hear you have such a great GP - I've found it definitely helps. And that you feel sane - I know that however much you 'know' they're wrong about something being 'just panic' it is easy to start second-guessing. Here's hoping your complaint has an effect and they treat you properly next time you have to go in (hopefully not soon).
What a scary few days you have had.
Sorry about the diagnosis but now you are aware and are treated accordingly hopefully you will feel better generally, even if your lungs are still stroppy!!
I have been following this thread but didn't want to bother you whilst you were poorly in hospital. I hope you don't mind me bombarding you with a few questions.
I have been on continious pred for 20 years now varying from 40mg after attacks to 10mg maintenance dose. Have to increase pred to 30mg for flare up and to 20mg for any other illness. Also on high inhaler steroid dose too.
Everytime I get a stomach bug I end up in hospital to have IV hydrocortisone-is this the drug you take now?
I have often wondered about adrenal supression and did ask a consultant once about it (not the fab one I'm with now)and he said of course my adrenal glands wouldn't be working of there own accord and I would be on pred for life!!
This was a few years ago now and not thought too much about it again until recently and with you posting this its made me want to sort it out.
How do you test for adrenal problems? Do you have to temporarily stop pred/lower inhaler dose?
If my adrenal are shot what symptoms would I get?
Also, could you point me in the direction of seretide use in children as both my girls are on this and didn't know about the link-what sort of dose is causing this?
Really sorry this has turned into an essay but its so nice to find someone who 'gets it'!!
Hope you have a good Easter x
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What a scary few days you have had.
Thanks - still reeling occasionally, though the strong painkillers for the broken wrist are helping!
Sorry about the diagnosis but now you are aware and are treated accordingly hopefully you will feel better generally, even if your lungs are still stroppy!!
Lung stroppiness MASSIVELY improved. PF at 90% of best, which is great! I'm still on triple my maintenance dose of steroids but still, my chest is much less twitchy and I've been able to recover the minor attacks I've had in the last few days with only 2-4 puffs of ventolin. WIN!
I have been following this thread but didn't want to bother you whilst you were poorly in hospital. I hope you don't mind me bombarding you with a few questions.
Not at all - bombard away.. though I can't say I have much expertise -only my own experience.
I have been on continious pred for 20 years now varying from 40mg after attacks to 10mg maintenance dose. Have to increase pred to 30mg for flare up and to 20mg for any other illness. Also on high inhaler steroid dose too.
Everytime I get a stomach bug I end up in hospital to have IV hydrocortisone-is this the drug you take now?
Yes - but I'd be interested to know why they give you the IV HC. Does your asthma kick off? Or is it for broader symptoms.
I have often wondered about adrenal supression and did ask a consultant once about it (not the fab one I'm with now)and he said of course my adrenal glands wouldn't be working of there own accord and I would be on pred for life!!
This was a few years ago now and not thought too much about it again until recently and with you posting this its made me want to sort it out.
Wow. Even if you need life long steroids, pred isn't the only option. Definitely chase it up!
How do you test for adrenal problems? Do you have to temporarily stop pred/lower inhaler dose?
I had to come off of oral steroids, but inhalers were fine. I believe that they can increase your result but not lower it, and if it's borderline they would repeat the test. Initially they just take a 9am (or 8am) blood sample. Normal folks have a huge peak in cortisol in order to wake them in the morning. Numbers like 700 are normal, with up to 1000 if you were in any way fighting an infection - even a splinter. My cortisol was less than 50. Anything less than 200 is seen as interesting.
So - if you have a number less than 200, the next step is to directly provoke your adrenal glands to do their best. They take blood, then give you an injection, then take more blood after 30 and 60 minutes. Your cortisol level should leap. Mine kind of quivered and still didn't get close to 200. (Again numbers like 750-1000 are expected here). 5 minutes after the administered the stimulant I was so unwell that they called the specialist to ask whether it was even safe to continue. I got a lot of monitoring until the 60 minutes were up, and then straight on to HC and IV fluids to try to stabilise me.
I was quite shocked at how worried they were - I had been regularly feeling that unwell!
If my adrenal are shot what symptoms would I get?
As long as you are on pred, you might not get any symptoms. The symptoms people do get are massively varied, but the key stuff is about losing the auto-pilot controls for your glucose/fluids/electrolytes etc. It seems like in the majority of people these measures tend to be off in one direction, but in others they go the opposite way.
Probably the most visible symptoms I've had recently (over a few months) were increasing loss of motor control, problems with coordination, extreme shakes, loss of peripheral vision, extreme headaches (I've had migraine for 20 years so I didn't really worry too much about those) and the inability to retain fluids. And fainting/near fainting (cortisol controls blood pressure). Plus my asthma has been crap but if everything else is out of whack then it really would be!
The main thing is that I really have looked like I had been dug up!
Also, could you point me in the direction of seretide use in children as both my girls are on this and didn't know about the link-what sort of dose is causing this?
There were many links showed up when I searched for adrenal insufficiency and formeterol. Probably worth reading quite a few. I should stress that the percentage of cases is very low. My endo said that he expects it to be an uncommon problem but more common than on the old brown inhalers - simply because seretide is so much more effective. His perspective was that asthma is always the priority. Not breathing is more of an emergency and has a shorter window in which to fix it than adrenal issues!
Really sorry this has turned into an essay but its so nice to find someone who 'gets it'!!
Hope you have a good Easter x
No problem! You too. I have to say that I really can look back and see that I was extremely unwell on multiple occasions over the last few years. I can link back the start of a major change in my health to a bad head injury I had, but that could be coincidence. Fingers crossed that you're still functioning!
hth,
C
What my consultant has done to test my adrenal function is to switch me from pred to 20./ of oral HC (equiv to 5mg of pred) and wait a week and then I skip my morning HC and have the test. He felt I could manage on the equivalent of 5mg of pred for a week, but I'm back in hosp, could be a coincidence but I'm not sure. Anyway, they made me take 40mg of pred today, hoping thgis won't make the test on thurs impossible
With seretide, I was on seretide 250 and fluitcasone 250, so a really high dose of the fluticasone, which when combined with pred makes a really dodgey combination. I'm sure your daughters will be ok, as obvs lots of people take seretide, but if you're worried I'm sure your doc could try them on a dsifferent one and see how they do!
I suspect curiouser will be better placed to talk symptoms, but my cons was esp concerned about the fact that I could happily sleep 17hrs a day (waking up for meals and stuff) and muscle weakness!
Maddie was on Seretide but then moved onto nebulised budesonide 1mg!! So a ridiculously high dose. She then started maintenance Pred daily.
We'd noticed her weight decreasing to the point of her looking skeletal and her skin was literally hanging off her :-(( She became lethargic and constantly shivered and complained she was cold. (This was during the summer!!) She was drinking 4L a day but still thirsty. She also kept getting pins and needles in her legs.
We had taken her in to hospital outpatients app to have an early morning glucose blood test done. While she was there the nurse said she would test her adrenals. The cons hadnt even asked for this, it was purely by chance. We were told the results would be back withing 3 days. That very evening, about 10pm, the phone rang. It was the consultant telling us to go straight to hospital!! Apparently an early morning cortisol level should show cortisol levels of about up to 700, Maddies were just 16!!!!!!
She had a scan of her Adrenals but sadly they weren't evident on the scan....they could even see them!!
I was mortified. BUT they told me not to worry and sometimes this can happen in children. Maddie was 2.
The thing is, I'm not sure!! I've not heard anything to suggest that if Adrenals actually shrink to nothing, that they can recover?!?!
Does anyone know this????
I took a baby for a scan of his kidneys recently and his adrenals were visible....he was 2 days old!! So where were Maddies at 2yrs?!?!
She is now 4 and no closer to coming off Pred. We have no idea if it is Primary or Secondary as she is not able to do the Synachen test. The cons said that at present it would show no function. All I want to know is if its Primary or Secondary!! I know the treatment is no different, it's just 'knowing'!!
Sorry to hijack your thread. It's so lovely to have a place for 'Adrenal' problems.
Take care. I hope things improve soon xx
Thank you soooo much for such a detailed reply. It has been really useful.
I am going to make an appointment to discuss it wuth my fantastically supportive GP and she what she thinks before mentioning it at my next cons appt.
I don't really know if I have any symptoms or not. That might sound stupid but all the silly little niggles etc I have I just put down to all the medication I take and the toll my asthma takes on me and my body-but I guess it could be due to adrenal suppresion too.
Don't like the sound of coming off pred to be tested though!! I know I don't want to be on it but my ashtma is just pants without it ans would be so scared of ending up in ITU.
How did you respond to being off it-do they put you on something similar to keep your chest well?
Hope you are doing ok over the bank holiday. Had OOH visit with my eldest-now on anti- b's for a severe chest infection! x
i think you only HAVE to be off it for 24 hrs (pathology.leedsth.nhs.uk/dn... But if they suspect it then they might move you over to oral hydrocortisone (personally i was put on 20mg which i believe is about 5mg of pred) which you would take the day before the short synatcin test, and then have with you at the hosp to take after you've had the test (obvs you cant take it on the morning of the test)
personally i've noticed quite significant symptoms of fatigue - im sleeping about 12 hr bursts and then napping (asmuch as my breathing will allow - on a good day thats what i'll do) and i've found things like dressing my niece takes ages as my arms are too weak to hold up to her shoulders for long enough to do up two buttons - silly little things like that. But given that i'm already being vaguely treated for adrenal suppresion the symptoms could easily be masked (and if you are on long term pred then it'll be similar for you)
I know this is an old post, but I've been away for a while. Just wanted to say I'm so glad that you finally found an explanation for all the problems you've had. Hope things are going better for you, now that you and your doctors have a better idea of what is going on.
Beth
You just need you verify about the diseases Before starting treatment, A doctor needs to make sure a person has Addison's disease. In its early stages or not its very important thing. My grandmother has also this disease. since 2005 or 2006 but my we didn't noteced but now he looks like a so dangerous diseas. she has a daily blood tests check for sodium, potassium and white blood cell levels. and have a daily dos according to doctor's instruction.
Some really handy information here.
I've now been dealing with brittle asthma and adrenal insufficiency for a few years and have made a couple of interesting (well, I think so!) observations.
With untreated additions, potassium levels end up very high. With the treatments required for brittle asthma - high dose nebulisers, aminophylline etc etc - potassium tends to plummet.
You can therefore indirectly measure my adrenal control by watching my potassium levels: when on IV hydrocortisone (so, more than sufficient to control the adrenal problems), I tend to require almost continuous potassium replacement. Once this is changed to oral pred, where my absorption is less guaranteed, my potassium levels start holding up on their own. Good news, but does actually mean that the adrenals are Working quite hard to maintain sufficient working cortisol levels.
When I was tested, my initial pre-dose level was 36, rising to 189 at it's maximum. Like others above, I have been told that it is unlikely adrenals will recover sufficiently ever to come off replacement altogether.
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So diagnosis and plan... I think...😂🤣🤞🏽🦄
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