secondary adrenal suppression/addisons

Kind of asthma related as I probably wouldn't be in this boat otherwise.. have an urgent endo appointment next week and had my bloods done Monday so that I could get results at appointment. Just found two missed calls from endocrinology doc on my phone asking me to ring them asap - never a good sign lol.

So my 9am cortisol was 11 (and should be 5-600). He was mighty relieved to discover Im already taking 5mg of pred in the morning and was really rather keen to impress the importance of me continuing to do so until appointment. He said after the appointment I will be seen by the specialist nurse to discuss plans, emergencies, and transition to hydrocortisone. I kind of expected them to diagnose SAS but quite shocked at how low my cortisol was, no wonder Ive felt so ill. Hopefully this will be the start of feeling better and getting some weight back on :)

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  • I hope this makes a difference to you! I certainly felt a load better when taking hydro than pred - much nicer form of steroid, and the sick day rules are good, i certainly notice if i dont sick day dose when i need to!!

    they did the exact same thing for me when i had my short synacthin! do you know if they plan on doing that for you? i guess endo will probs decide!

    as with everything make sure you ask loads of questions at endo. i often find doctors very lacking in their knowledge about SAS, and how to treat it, especially alongside asthma. you probably have it covered - but if you're unsure or havent had time to look into it much i can give you a few ideas of questions that im glad i can answer!! mainly: what does endo want you to do when lungs need pred, and in an emergency does she want you to clarify secondary AI, or can you liken it to addisons to the paramedics!)

    good luck with endo appt, and feel free to ask any Qs, let us know how it goes x

  • Sending huge hugs.

    It's such a shock to get a result like that. Maddies 8am cortisol was 16 and I was completely shocked. She had lost weight, was cold all the time and generally quite ill. She has been on pred ever since as that's treating her asthma. We haven't yet transferred to hydrocortisone although that is the plan as soon as her lungs agree to play ball.

    As for describing it, I say adrenal insufficiency and most medics know what it is. I've never said its addisons but often thought about it as then it would have a proper name and not need as much explaining!!

    I so hope you feel better soon. Take care and remember the sick day rules.

    Emily x

  • As for describing it, I say adrenal insufficiency and most medics know what it is. I've never said its addisons but often thought about it as then it would have a proper name and not need as much explaining!!

    I find docs tend to know what it is - but often paramedics dont, my endo told me that at a paramedic level the treatment was pretty much the same so if they didnt get 'adrenal insufficiency' say 'it does the same thing as addisons' and they've always got it from that! im glad i found out as frankly when i need steroids i feel far too rubbish to explain - i also got a letter to give to paramedics telling them what to do!

  • I find docs tend to know what it is - but often paramedics dont, my endo told me that at a paramedic level the treatment was pretty much the same so if they didnt get 'adrenal insufficiency' say 'it does the same thing as addisons' and they've always got it from that! im glad i found out as frankly when i need steroids i feel far too rubbish to explain - i also got a letter to give to paramedics telling them what to do!

    I can add that to my other letter LOL. Unbelievable that paramedics don't know what it is!? Eeek....

  • Thanks Soph. I had a short synacthen test a few months ago. At that time, my cortisol was low but way higher than it is now! My adrenals were also still having some response to the synacthen which is normal in the earlier stages of SAS. So all that really told me was that I didn't have Addison's. I wonder if they will do an insulin stress test to confirm that my pituitary isn't kicking out ACTH when needed. I think there is probably wider pituitary stuff going in as I have also lost all secondary body hair and no periods for the last year.

    There is a brilliant website called endobible which was written by the consultant I'm seeing, and aims to ensure all docs follow the same procedures etc when looking at endocrine issues, it's really interesting.

    Http://www.endobible.com

    The biggest issue for me will be managing illness, and use of steroids for lungs. Do you carry an emergency injection in case of crisis? How often do you dose? Three or four times a day? The support group on Facebook which is mostly US folk, mainly dose four times a day to better replicate the body's natural cortisol curve. What time do you take the first dose? I am totally crap at waking in the morning... :/

    Need to start writing my questions down, I am a total goldfish, my memory and cognitive function have been appalling - am hoping that will improve too! x

  • Thanks Soph. I had a short synacthen test a few months ago. At that time, my cortisol was low but way higher than it is now! My adrenals were also still having some response to the synacthen which is normal in the earlier stages of SAS. So all that really told me was that I didn't have Addison's. I wonder if they will do an insulin stress test to confirm that my pituitary isn't kicking out ACTH when needed. I think there is probably wider pituitary stuff going in as I have also lost all secondary body hair and no periods for the last year.

    There is a brilliant website called endobible which was written by the consultant I'm seeing, and aims to ensure all docs follow the same procedures etc when looking at endocrine issues, it's really interesting.

    Http://www.endobible.com

    The biggest issue for me will be managing illness, and use of steroids for lungs. Do you carry an emergency injection in case of crisis? How often do you dose? Three or four times a day? The support group on Facebook which is mostly US folk, mainly dose four times a day to better replicate the body's natural cortisol curve. What time do you take the first dose? I am totally crap at waking in the morning... :/

    Need to start writing my questions down, I am a total goldfish, my memory and cognitive function have been appalling - am hoping that will improve too! x

    will have a look at that link, thanks!!

    I take 10mg, 5mg, 5mg on an average day. (can double or triple if needed, double for three days, triple for one and then i have to start telling people.) I found waking up gets easier once in a routine with the hydro (pred doesnt do mornings nearly as well - although mornings are always hard with stroppy lungs) i like to set an alarm about an hour before i need to get up to take my hydro, because then i can nap for another hour and its thoroughly kicked in by the time i need to be out of bed. hydro is absorbed reasonably in about 15mins, so allow yourself a bit of bed time to let it kick in. it lasts about 6hrs (oral, injected or IV - some docs get that one wrong) so thats useful for working out when you're going to need more - but once you've stopped feeling rubbish all the time you'll properly notice when steroids have run out!

    I do carry an emergency injection. i dont know about you, and it depends on how well your endo knows asthmatics. i would discuss having at least two injections. they often only give one out, and ive found times when i would have been well enough to stay home and inject, but the only way i could actually get hold of steroids was to go to A&E (GP wouldnt even admit me to get steroids - and they're hard to get hold of from pharmacies at short notice) two injections will cover you for 12hrs of being unable to take oral hydro. also worth noting that crisis feels like you're dying (sense of impending doom and all the joys of that) im usually pretty capable of injecting myself but the first proper crisis i had i had to ring 999 and get someone else to di it coz i was this shaking, snivveling mess on the floor by the time i realised i needed it and mum wasnt sure how to mix everything up. so make sure there are people around who know how to do it if needed - where possible at least!

    Clear instructions on when to inject are really helpful (if you are vomiting at 3am, you've lost your steroid cover for the night before - but its a weird time to take any steroids anyway, but you cant keep them down) as well as when to go to A&E/MAU etc. D&V bugs get a lot more compliacted with adrenal insufficiency issues, and nausea and vomiting are a thing that you often get in crisis so the tendency to get more ill than most people is a bit of a pain too!

    the other thing to note is, my endo specifically told me that under no circumstances do i give up ALL my steroids, no matter ho is trying to take them, as no-one is good at remembering to give you steroids, and my cons has had lots of patients become dangerously ill due to missed steroid doses! so i keep someon me, i say they have to get an endicrinologist to come tell me if they really want my steroids locked up (not a big deal - i am happy to sign for them, i am happy to only have two, and you cant actually OD on steroids)

    my endo policy is 'if in doubt more steroids' as long term steroids can cause issues but in short term there are no real probs!

    Erm....usually i have to tell resp cons what to do with pred. basically, ive been told that its not going to do any harm to take both (hydro gets me to 'normal' level and pred to get me to 'lung' level), but a lot of docs refuse to let me be on two steroids. if they do this then we go JUST to pred, NOT just hydro. ive been made really ill by docs trying to give me 50mg, 40mg, 40mg of hydro - by the next morning id gone from 40mg of hydro to nothing overnight and had to have IV hydro to get me up!

    worth knowing as well that if admitted and nil by mouth (although arent you always nil by mouth?? - how do you take steroids??) then the general procedure for dealing with SAS is IV hydro given slowly over half an hour or so in a little bag, and being generous with the fluids and monitoring bloods. i have had little baby docs ask me how they should treat me before!! bit scary.

    these are the main things i should think about - obviouisly check everything with endo - i think it is something cons feel strongly about, but these are what i was told.

    and yeah - i need a pituitary test, but i cant get off pred for long enough :-( my short synacthin was below 15 before and afterwards, i was surprised, but almost pleased to have a valid reason for feeling so shocking!!

  • Thanks Emily. I know what you mean, I was really shocked. It explains why I've barely been functioning! Does Maddie feel much better on the pred? x

  • Hi,

    Maddie started to regain weight when she had a settled pred routine. She also didn't shiver with cold in the height of the summer!! She also stayed awake more as she had been falling asleep lots.

    As for dosing, obviously on pred, she has it once a day in the morning, however we have a hydrocortisone schedule outlined for when she is well enough asthma wise to make the switch over from pred..this states she doses 3 times a day with the bigger dose bein first thing and then two smaller doses the other times.

    Yup, we also have an emergency kit to administer in emergencies.

    I'd deffo recommend write all your questions down and have them ready for your next app.

    Take care,

    Emily

  • Thanks Soph, that is SO helpful. Interesting that hydro only lasts six hours, which means for most people who get a decent nights sleep,their levels must drop fairly?

    I might be a nurse, and used to doing IM injections, but the thought of having to do it on myself makes me shudder. I can't even bring myself to do the heparin jab when I'm in hospital lol. At the moment I have had a real issue with d&v which I think is due to the adrenal stuff as it's not a problem when I'm taking pred. I am able to have small amounts of drink orally so take some of my tablets orally. The rest go down my tube as I've got dysphagia and bigger ones just sit in my oesophagus for hours.

    Yes, having a valid reason for feeling so shocking is somehow reassuring even if the reason is pants! x

  • Thanks Soph, that is SO helpful. Interesting that hydro only lasts six hours, which means for most people who get a decent nights sleep,their levels must drop fairly?

    I might be a nurse, and used to doing IM injections, but the thought of having to do it on myself makes me shudder. I can't even bring myself to do the heparin jab when I'm in hospital lol. At the moment I have had a real issue with d&v which I think is due to the adrenal stuff as it's not a problem when I'm taking pred. I am able to have small amounts of drink orally so take some of my tablets orally. The rest go down my tube as I've got dysphagia and bigger ones just sit in my oesophagus for hours.

    Yes, having a valid reason for feeling so shocking is somehow reassuring even if the reason is pants! x

    Yeah, self injecting is a whole different game! i cant watch myself push down the plunger!! i can look for the rest!

    Hydro levels do drop very low overnight. in fact, im sort of in my last hour or so where i will have any steroids in my system coz i wanted to get an early night, everyone gets a natural dip in cortisol over night, and then the levels start to peak before you wake up (hence morning cortisol levels are the highest) but obviously our levels start to rise after morning steroid dose. Its good though - gives your body a little bit of time to attempt to produce some steroids all on its own - if you might get some function back this time is key to that.

    Possibly worth asking what to do if up all night - when i am i do an extra 5mg at sort of midnight to get me through to 6am dose. (in theory you can have steroid cover doing 6, 12, 6,12) not that im ever planning on being up all night apart from if im in hospital in which case im on pred.

    if i think of anything else ill add it - and feel free to ask anything. Like i say - a lot of docs are quite poor at endo and that is the thing i have been asked my opinion on more than anything else, quite stressful when im feeling shocking having some baby doc coming up to ask what treatment i need and when!!

    hydro tablets are scored so they can be broken up really teeny tiny! but they taste EVIL if they get caught on your tonuge!!

    x

  • Good to hear about her weight gain Emily, I have lost almost a stone and my BMI is now 17 :( The sleep thing is one of my biggest problems, I can sleep 12-14 hrs a night and still feel exhausted. If those two things improve I will be so happy! :)

  • Hey NF - Soph has given you loads of good advice.

    You should start to feel a lot better once on treatment, though as Soph says, it's all a bit fragile (but then you're used to that).

    If you're up all night you should use the shift-worker rules, which are to take an extra 2.5 (or a quarter of your normal morning dose) every 4-6 hours.

    The body hair falling out and lack of periods sounds like hypothyroid, doesn't it? If that's the case, it's very important that they correct your cortisol before your hypothyroid, as doing it the other way around can cause a crisis. There is a lot of overlap between Addison's and Hypothyroid so they'll probably run antibody tests - though these are negative even in some people with definite Addison's disease. It's easy to assume steroid suppression, but Addison's is an auto-immune disease and so is asthma so... etc.

    They rarely do the insulin challenge these days as if you do have adrenal insufficiency it will put you into crisis. I am now on hypoglycaemic agents for my T3c diabetes, and I have to be very careful of hypos as the time from going low to collapsing is potentially very brief, and the consequences pretty horrible.

    The jabs, taste of tablets etc I'm sure you'll get used to quite quickly.

    The ADSHG is an amazing support organisation with fantastic info leaflets (for Drs and Nurses as well as patients).

    The key thing for your survival - as Soph said - is to never, ever let anyone take your steroids away from you. Delays in drug rounds and so on, or people not understanding the need to up the dose at the first sign of trouble, and you'll find yourself in crisis in hospital. I now self-medicate my steroids always. I can't remember if you have a port? IM is just as good as IV unless your circulation is really shut down - I've had that happen a couple of times and had to go IV instead.

    The other important thing is to take a clear mental snapshot of your symptoms right before they get it treated. If you feel that way again, assume you're steroid deficient and take extra.

    If you have malabsorption issues generally then you should talk to your endos about that as well.

    Good luck!

    Cx

  • Hello, havent seen you about for a while, how are you?

    They did a ton of bloods, including thyroid antibodies etc and I will get the results of those Tuesday. The doc didn't have all the results on hand when he rung me, it was just that the lab had contacted him straight away about the low cortisol. Ive also been diagnosed with thrombocytopaenia, Im not sure if thats related to adrenal suppression but will mention it at the appointment. Interesting that the only time it resolves is when Im on steroids!

    ADSHG... Addisons disease self help group? will look it up, thank you :)

    Ive had nurses in general hospitals stuff up my meds so many times (including forgetting to give me steroids and insisting Im not on them, when Im written up for 30mg!) that trust me, I will be holding on to them tightly! Thankfully I self medicate in Papworth and thats where I usually end up. I havent got a port yet, my veins are still holding out, helped by the use of long lines rather than cannulas. Long may it last..!

    I've actually just increased my steroids - this is a learning curve. I've had two days in bed with severe pain (due to other chronic issues) but have been feeling progressively worse and finally cottoned on yesterday that the fact I had a splitting headache, dizziness, terrible brain fog, and nausea/dodgy guts wasn't related to my pain. Took another 5mg of pred (currently on 5mg in the mornings until appointment) and an hour later felt like a completely different person. Doh. He told me to stress dose if unwell, I hadn't really given things like severe pain a thought, I guess from a physiological perspective that is additional stress.

    Do you wear a medic alert? I already have one, but I guess I should have this added? What does yours say, if you do have one?

    Hope you're doing okay

    Lynda x

  • Thanks Lynda (and for your reply on my CF thread),

    I'm doing pretty well, now that the diabetes is under more control. I was horribly ill in Sept/Oct - was in a few days, out a week and then in for 13 days. Gah. But things are much better now I'm not spiking crazy blood sugar levels, peeing 4-8 litres a day and scraping along at 5 stone 12! My asthma doesn't like the blood sugar rollercoaster either, so it's behaving better too.

    I believe there is a link between adrenal insufficiency and thrombocytopaenia - and I have a feeling that the TCP can trigger the AI, but I'm not really sure what the mechanism is.

    Don't let them fob you off with it being 'just secondary' btw - beta-agonists will mask most of the signs of aldosterone deficiency - which is handy as you don't require fludrocortisone but can make the diagnosis unclear. In my case they've basically said ""we don't know... "" - which I'm happy with. I don't need aldosterone replacement clinically, as my K, Na and BP are (just) within range on a normal day. My advice is that if any Dr treating you generally ever asks how come you've got adrenal insufficiency you just say ""we don't know"". Some will make stupid assumptions that they can 'cure' you by weaning you off your steroids, or that they don't need to take it as seriously as 'proper' Addison's disease.

    In theory you can recover adrenal sufficiency, and in young people this does seem to happen, but cases of proper recovery are so rare that the ADSHG board members can count on their fingers the number of members who have left due to recovery. In any case, unless your circumstances have changed, even if the condition is 'doctor generated', you would simply be ending up back in the same position repeatedly, and chaotically.

    Do you know what sort of response you had on your short synacthen test? (If you've not had it yet then they'll switch you to dex for a bit before it as that lets them still do the test).

    It is indeed a learning curve - for various reasons that I'm sure are just due to having met so many medics who make you feel like you've got bloody munchausen's, I often feel that I need a 'proper reason' to use the sick-day rules. The reality is that a normal immune system fights off many more bugs than it succumbs to, and ups its game for stress of all kinds. The sick day rules are there as 'positives' - fever of 37.5, infected looking cut etc, antibiotics - all need sick day dosing for definite, but they're not an exhaustive list. Lots of people have to up their dose for migraine, period pain, allergies, asthma attacks or just a big day out. If you feel dodgy don't hesitate - if you feel transformed by the time the dose kicks in then it's a good clue!

    The most important thing I've learned is that it does not matter why you need more cortisol - if you need it you need it. And you can do the detective work later. I had 2 full crises this summer due to infected insect bites. One of the early physiological changes with low cortisol is that you stop producing digestive enzymes - my digestion just shuts down, and then I stop absorbing my steroids that I'm taking orally - cue the 'death spiral'. So I need to switch to injected HC early - though not necessarily big doses, often I'll only go on to normal sick-day dosing but I'll do all my HC by injection rather than tablets.

    I do wear a medic alert - mine says Adrenal Insufficiency (and Asthma and Anaphylaxis - need to have it updated to add Diabetes). The good news of course is that in a severe asthma attack the chances are that you'll be given 100mg of HC by IV anyway!

    I have 3 injection kits - one in my bag, one by the bed and one under the driver's seat in the car. The injectable HC is actually cheaper than the tablets so don't be shy about demanding them. Once mixed up, the solu-cortef will keep for 5 days at room temp and 81 days in the fridge (in the container or in the syringe), so I now also mix it up as soon as I start to think ""uh-oh"" - I've always managed to self-inject when needed, but trying to do the needle changes and all that when you're mid-crisis is tricky and I gave myself a really good needle stick!

    Yup - the ADSHG is there - small fee to join but it's worth it. They have a reputation as the best source of information and good practice on CAI (chronic adrenal insufficiency - whether by Addison's disease or any other cause) in the world.

    Chances are that you will feel a lot better still once they get you on to HC instead of pred. HC also has some mineralocorticoid cover which you'll also be deficient in.

    Fingers crossed for you - for me it was incredible how much difference it made to my asthma, even though technically the dose I'm on now is only equivalent to about 2.5mg of pred.

    Cx

  • I'm doing pretty well, now that the diabetes is under more control. I was horribly ill in Sept/Oct - was in a few days, out a week and then in for 13 days. Gah. But things are much better now I'm not spiking crazy blood sugar levels, peeing 4-8 litres a day and scraping along at 5 stone 12! My asthma doesn't like the blood sugar rollercoaster either, so it's behaving better too.

    Ugh, that sounds terrible! Poor you.

    I believe there is a link between adrenal insufficiency and thrombocytopaenia - and I have a feeling that the TCP can trigger the AI, but I'm not really sure what the mechanism is.

    Thanks for that - I was wondering whether to mention it at the appointment, now I will ;)

    Don't let them fob you off with it being 'just secondary' btw - beta-agonists will mask most of the signs of aldosterone deficiency - which is handy as you don't require fludrocortisone but can make the diagnosis unclear. In my case they've basically said ""we don't know... "" - which I'm happy with. I don't need aldosterone replacement clinically, as my K, Na and BP are (just) within range on a normal day. My advice is that if any Dr treating you generally ever asks how come you've got adrenal insufficiency you just say ""we don't know"". Some will make stupid assumptions that they can 'cure' you by weaning you off your steroids, or that they don't need to take it as seriously as 'proper' Addison's disease.

    What did they do, to try and find out if anything? I thought they could test ACTH levels, which would be high in primary (because the pituitary is desperately trying to stimulate the adrenals) and low in secondary (cos pituitary no longer kicks out enough ACTH). It didn't occur to me that they wouldn't be able to figure out why... Having suffered/survived 8 months with no steroids, trust me I aint letting no one tell me they can cure me that way! Its been a terrible eight months that I have no desire to repeat. I think I will just stick with 'adrenal insufficiency' and leave it at that then.

    Do you know what sort of response you had on your short synacthen test? (If you've not had it yet then they'll switch you to dex for a bit before it as that lets them still do the test).

    I can't remember the numbers, but they said I did respond sufficiently to it when I had it a few months ago. Thats not unusual with secondary AI in the earlier stages as the adrenals still have some function if stimulated. I wonder if they will repeat it..

    It is indeed a learning curve - for various reasons that I'm sure are just due to having met so many medics who make you feel like you've got bloody munchausen's, I often feel that I need a 'proper reason' to use the sick-day rules. The reality is that a normal immune system fights off many more bugs than it succumbs to, and ups its game for stress of all kinds. The sick day rules are there as 'positives' - fever of 37.5, infected looking cut etc, antibiotics - all need sick day dosing for definite, but they're not an exhaustive list. Lots of people have to up their dose for migraine, period pain, allergies, asthma attacks or just a big day out. If you feel dodgy don't hesitate - if you feel transformed by the time the dose kicks in then it's a good clue!

    Its been a learning curve already. Cant remember if I said it here (my brain is not functioning that well atm) but spent two days earlier in week with severe neck pain in bed due to other chronic issues. Was feeling worse and worse, not better, ended up with blinding headache, giddy, brain fog, nausea and diarrhoea before I finally cottoned on that this wasnt what usually happens and took some pred. 45mins later was feeling hugely better!! The other difficulty Im having is taking 5mg in the morning means that when I first wake, I feel terrible - nauseous, diarrhoea, cold and generally crap. Im going to try taking a ¼ of a tablet (1.25mg) tonight to see if that helps. Its creating problems as I cannot tolerate my feed.

    The most important thing I've learned is that it does not matter why you need more cortisol - if you need it you need it. And you can do the detective work later. I had 2 full crises this summer due to infected insect bites. One of the early physiological changes with low cortisol is that you stop producing digestive enzymes - my digestion just shuts down, and then I stop absorbing my steroids that I'm taking orally - cue the 'death spiral'. So I need to switch to injected HC early - though not necessarily big doses, often I'll only go on to normal sick-day dosing but I'll do all my HC by injection rather than tablets.

    blimey... insect bits did that!? :/ I can't believe what you've just said about digestive enzymes! For MONTHS I have had problems tolerating my feed and digesting it, I haven't been able to figure it out. In desperation (I was losing weight hand over fist) I bought some digestive enzymes, and things have been loads better since then. I had no idea...

    I do wear a medic alert - mine says Adrenal Insufficiency (and Asthma and Anaphylaxis - need to have it updated to add Diabetes). The good news of course is that in a severe asthma attack the chances are that you'll be given 100mg of HC by IV anyway!

    Need to get my medic alert tag updated anyhow, when I renewed and changed all the information they didn't actually bother to amend it.... think I may have to get a large tag now :(

    I have 3 injection kits - one in my bag, one by the bed and one under the driver's seat in the car. The injectable HC is actually cheaper than the tablets so don't be shy about demanding them. Once mixed up, the solu-cortef will keep for 5 days at room temp and 81 days in the fridge (in the container or in the syringe), so I now also mix it up as soon as I start to think ""uh-oh"" - I've always managed to self-inject when needed, but trying to do the needle changes and all that when you're mid-crisis is tricky and I gave myself a really good needle stick!

    thanks for that - I will be persistent. Given that Im prone to unpredictable asthma attacks, and I drive long distances I think its reasonable for me to have one. It might be that they give me one as a matter of course, but I will be prepared to press for it. If not, my GP likely will.

    Yup - the ADSHG is there - small fee to join but it's worth it. They have a reputation as the best source of information and good practice on CAI (chronic adrenal insufficiency - whether by Addison's disease or any other cause) in the world.

    Yup, its a good website, have had a read of loads of it, though the A&E/paramedic horror stories fill me with dread!

    Chances are that you will feel a lot better still once they get you on to HC instead of pred. HC also has some mineralocorticoid cover which you'll also be deficient in.

    Oh I do hope so :)

    thanks x

  • Hey NF - yikes - sorry you've struggled with the no-digetive-enzymes issue for so long - it's grim.

    You're right-ish about the ACTH, but a fairly large number of people with primary Addison's disease also have asthma, or other pituitary conditions, and they end up not producing ACTH. Only around 80% of people with Addison's have the characteristic 'tan' that comes from high ACTH. There's absolutely no reason why a person shouldn't have both failed adrenals and failed ACTH production.

    If your first SST response was adequate then that means that at that stage only your ACTH was failed and your adrenals did still work when poked. That's good news, but it sounds like since then the situation might have changed?

    In terms of insect bites and cortisol requirements, basically our immune system works really hard (invisibly) to maintain the barrier between our organs and the nasty world via our skin. Anything that puts germs into your skin requires a rapid, strong immune response to quickly get rid of it. So a dirty scratch or graze, or a yukky insect bite (this was from a kind of tiny tick that we have here called a berry bug - in the US they call them chiggers) needs a much stronger immune response than a head cold. So any cortisol you've got on board quickly gets used up and then you're deficient.

    The sick day rules my endo dept use are that for any inflamed or infected looking skin injury requires you to double-dose (or more) for 3 days. I had to do it last week because a fingernail got infected.

    One of the things that happened to me before Dx, which I now know was a crisis, is that we drove to Spain for our holidays, and the day before we went I cleaned the car, and scraped my knuckle on a sharp, oily bit of metal under the driver's seat. I cleaned it up but at that stage every little cut I got was being a problem, and it got all icky on the course of the 3 day drive, but not so bad that I was thinking it needed a doctor. Just as we arrived in the village where our house is - about an hour before dark - I suddenly felt really unwell and knew I was going to have bad D&V. I thought it was food poisoning. We arrived at the house to find the electric cut off because over the winter they'd sent a letter asking for a safety certificate, and we'd not got the letter. Because there was no electric there was also no water. Oh well... so I had awful gastric upset in the dark with no running water. Nice. Fortunately my asthma was also playing up - so I doubled up on my fluticasone, which probably saved my life - there are cases of people with Addison's who can't take tablets, for example due to gastric bypass, who are treated entirely with inhaled fluticasone.

    Anyway... one happy outcome was that every time I've had D&V since then I've smiled to myself about the luxury of electric light and flushing toilets!

    And the moral of the tale is always, always double up for icky cuts, insect bites etc. In the summer I did double up (I actually triple my oral because part of my steroid cover is provided by Seretide) but we didn't realise how bad my malabsorption was at that point. Now I know to go straight to injections when my absorption is dodgy. The advantage of being so skinny - which I'm sure you'll have too - is that I can do a fairly deep IM injection with a 12mm insulin syringe - which allows me to be more precise as well as being easier.

    Good luck!

    Cx

  • ]Hey NF - yikes - sorry you've struggled with the no-digetive-enzymes issue for so long - it's grim.

    Yup! and when feed is being pumped into you 24/7 its no fun at all.

    You're right-ish about the ACTH, but a fairly large number of people with primary Addison's disease also have asthma, or other pituitary conditions, and they end up not producing ACTH. Only around 80% of people with Addison's have the characteristic 'tan' that comes from high ACTH. There's absolutely no reason why a person shouldn't have both failed adrenals and failed ACTH production.

    Hadn't thought about that ;)

    If your first SST response was adequate then that means that at that stage only your ACTH was failed and your adrenals did still work when poked. That's good news, but it sounds like since then the situation might have changed?

    It seems things have changed radically - I dug out the numbers. My 9am cortisol a few months ago was 300 - low enough to likely be SAI, and my response to the SST was adequate, the last blood being just over 600, which in early SAI isn't uncommon as the adrenals havent yet shrivelled. A few months later and my 9am cortisol is 11, so things were clearly going down the pan! I had my endo appointment yesterday, the consultant was fantastic (and very funny to boot). Very long appointment, with lots of history taking and thorough physical exam. I seem to have made a marvellous patient as he had two students in with him, so he could teach them about all my different issues including two rare syndromes lol. He's happy (if thats the word!) that it is adrenal insufficiency secondary to long term steroid use, and given both my cortisol level, and the 8 months I was steroid free is also saying that things won't ever to normal, so I will now be on hydro ad infinitum. He said with a cortisol that low its fairly pointless doing another SST as there is no way there would be a sufficient enough response and won't change treatment. Has done a raft more bloods, and is also going to take over my osteoporosis care as this was concerning him. Unfortunately the IV infusion I have for my bones is only licensed for three years, not great news when you're only 40!

    One of the things that happened to me before Dx, which I now know was a crisis, is that we drove to Spain for our holidays, and the day before we went I cleaned the car, and scraped my knuckle on a sharp, oily bit of metal under the driver's seat. I cleaned it up but at that stage every little cut I got was being a problem, and it got all icky on the course of the 3 day drive, but not so bad that I was thinking it needed a doctor. Just as we arrived in the village where our house is - about an hour before dark - I suddenly felt really unwell and knew I was going to have bad D&V. I thought it was food poisoning. We arrived at the house to find the electric cut off because over the winter they'd sent a letter asking for a safety certificate, and we'd not got the letter. Because there was no electric there was also no water. Oh well... so I had awful gastric upset in the dark with no running water. Nice. Fortunately my asthma was also playing up - so I doubled up on my fluticasone, which probably saved my life - there are cases of people with Addison's who can't take tablets, for example due to gastric bypass, who are treated entirely with inhaled fluticasone.

    I had a similar experience (i.e. a crisis, but I didn't know it at the time) when I came off steroids - I was talking to the consultant about it yesterday and he said I had definitely described a crisis, and was rather lucky it didn't end badly! I had reduced them soooo slowly too - by 2.5mg every two weeks, right down to 1.25mg before stopping. I spent three days in bed with horrific loin pain, d+v, temperature, dizziness and freezing cold. I thought it was some weird stomach bug at the time, I just didn't join the dots up. I don't fancy that happening with no electric and no water though, must have been dreadful!

    Anyway... one happy outcome was that every time I've had D&V since then I've smiled to myself about the luxury of electric light and flushing toilets!

    hahaha :)

    And the moral of the tale is always, always double up for icky cuts, insect bites etc. In the summer I did double up (I actually triple my oral because part of my steroid cover is provided by Seretide) but we didn't realise how bad my malabsorption was at that point. Now I know to go straight to injections when my absorption is dodgy. The advantage of being so skinny - which I'm sure you'll have too - is that I can do a fairly deep IM injection with a 12mm insulin syringe - which allows me to be more precise as well as being easier.

    Part of my fear about the whole IM thing is my skinniness. Think I will get smaller needles too... I saw the specialist endo nurse too yesterday and have several booklets about sick day rules and what to do if you puke your dose up. One is now on the fridge, one in my handbag and one in the car. I am super at losing things and forgetting things lol. She also recommended having injection kits in the car so will sort that out with my GP so I have one in both cars and one at home, plus spare hydro tablets. Did you find your cognitive function and memory improved with treatment?

    Good luck!

    thanks :) and thanks for your thoughts, they have been really helpful. I have just joined the ADSHG too.

    Lynda x

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