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Tapering off inhaled steroids due to steroid induced adrenal insufficiency

Tapering off inhaled steroids

Seretide has completely suppressed my adrenals. I mean completely. It's been going on for years, but doctors don't 'see' it. An endo saw my low cortisol years ago but didn't act. Now it's gone... ccan my adrenals ever come back? Hospital can't predict.

Hospital want me off steroids, so I have started tapering off the inhaler.

Anyone else done this after decades on an ICS?

Started Montelukast. Resp. Consultant mentioned Biologics, but no concrete news yet.

Reduced for 3 months now, half the original dose atm, and breathing affected.

has anyone been through this nightmare?

--> How did it go?

--> What was the timeline?

--> What alternatives were you offered for your asthma?

--> did your pituitary and adrenals start up again? If so, at what point?

--> did you take hydrocortisone?

any other info.

96 Replies

Hi I was diagnosed with adrenal insufficiency in December after a random blood test showed very low levels of cortisol. I am on long term prednisolone and have been told by my cons to try and taper down to 5mg very slowly but not to go lower then 5mg.

If you have been diagnosed with adrenal insufficiency u should be on replacement cortisol eg prednisolone or hydrocortisone. if not this could lead to an adrenal crisis

It sounds like you need to speak to your consultant and see what they recommend, there are also different tests then can do to check for adrenal insufficiency.

it might also be a good idea to make a Gp appointment to check your cortisol levels.

I had no idea that steroid inhalers could cause this. I have been on a very high dose of fostair for years. I'm sorry that I can't help with any answers other than to say that I believe you should be taking hydrocortisone. I wish you well.

runcyclexcski profile image
runcyclexcski in reply to CDPO16

>>>I had no idea that steroid inhalers could cause this.

My docs (in the USA) told me I should rinse my mouth every time I take Seretide. I never bothered. Probably should have. But I am now on pred anyway (5 mg a day).

CDPO16 profile image
CDPO16 in reply to runcyclexcski

Nor I. I do rinse my mouth but doubt that would make any difference in this regard.

in reply to CDPO16

No, it didn’t make any difference to me: I was very conscientious about rinsing my mouth with water after each inhalation.

Doctors don’t seem to know either although there’s plenty of literature on it once you start looking for it. Especially Fluticasone- the main culprit by miles (not the only one though).

in reply to runcyclexcski

Don’t worry- I don’t think it’d have made much (or any) difference. I think the problem also lies further into the body. Fluticasone is just a high risk drug for HPA axis suppression 😕

Longterm high doses of prednisolone has left me with severe adrenal suppression. You need to take replacement steroids (hydrocortisone) it’s very important or risk adrenal crisis with can be life threatening.

There are important guidelines that you also need to follow if you require some medical procedures or are unwell ie increase oral steroid dose or have a 100mg hydrocortisone injection or be on a drip.

Even having a tooth out necessitates an injection.

Your endocrinologist should advise you and arrange an injection kit for emergencies.

Lysistrata profile image
LysistrataAdministrator

I had adrenal insufficiency for about 4 years after multiple long courses of oral steroids - it is, as you've found, also possible, though less common, on inhaled steroids. I've recovered now so it does happen - and I'm still on high dose Fostair. I don't tend to get oral steroids now though as I don't really respond to them, even though my asthma isn't yet controlled.

Is it endocrinology who want you off all steroids or respiratory? Either way that seems dangerous and as far as I know NOT how it should be approached. If you have adrenal insufficiency you have to treat it - with steroids. It is extremely unsafe not to have them or not to increase as needed to supplement the cortisol you can't produce under stress and you cannot just force your adrenals to work immediately by removing steroids.

As I've mentioned it is possible to recover, and I tapered down the hydrocortisone I took for AI until I found I didn't need it (via regular tests). During that time I had an adrenal crisis when my asthma was triggered by a virus. Asthma itself is a physiological stress which is likely to increase your steroid need just for the adrenal insufficiency. I get that it's a little different if you got AI from inhaled steroids, but endocrinology never went near my asthma meds.

It also flatly isn't recommended for literally anyone with asthma to take no inhaled steroids at all. It may be possible to reduce the dose for some people, and certainly to have other non-steroid medications, but not to come off them entirely - and you're already struggling it seems. I'm concerned they're suggesting this. Are you under endocrinology still? The biologics could take a while even if you are eligible, and I feel that they really need to stop pushing this and look at the whole picture - which includes both your asthma and your current need for steroids to support your adrenals.

This post I wrote may be helpful: healthunlocked.com/asthmauk...

It may also be worth calling the Asthma UK nurses to chat about your options - they have more time than your consultant and a lot of experience.

AUK helpline - 0300 222 5800 M-F 9-5

AUK WhatsApp - 07378 606728.

hilary39 profile image
hilary39 in reply to Lysistrata

I second all of this!

in reply to hilary39

But if you don’t taper off then how can you tell whether your adrenals can recover and start working again? It’s the steroid inhaler suppressing them.

hilary39 profile image
hilary39 in reply to

Am I understanding you right that your cortisol has been tested 5 times in the past few months and it was 10-50 depending on the day? What is the range of normal cortisol for 8 am in the test you took?

If you have been diagnosed with adrenal insufficiency, it is critical to take hydrocortisone every day or you could have an adrenal crisis because your body doesn't have enough cortisol for your organs to function. Crises can be fatal.

Hydrocortisone burns up quickly in your system which is why many of us on here who have AI divide our doses into 3x per day--it helps mimic the rhythm of natural cortisol production.

This means that an 8 am test will accurately show how much cortisol your body is making on its own since the HC will have burned off overnight, if that makes sense. That way you can see if your adrenals are recovering.

I had an endo who also thought my controller inhaler (Symbicort) had suppressed my adrenals.

You're right that it's adrenal suppression is poorly understood and very few endos and pulmonologists know much about it. I have learned almost everything I know about AI from an AI support group I'm in + papers I've read online.

in reply to hilary39

That was always the 8am cortisol blood test, but while on my steroid inhaler full dose. I am now down to 50% (gradually reducing).

I was diagnosed AI based on the blood cortisol level and short synacthen.

But they only said don’t take steroids on the morning before the synacthen test, so I took 2 puffs the night before.

I have gained 8kg and my skin is transparent and thin, lots of bruises etc so all match too high cortisone (from the inhaler)

I was prescribed hydrocortisone and have it ready. The respiratory consultant knows I’m not taking it (yet). The endocrinologist prescribed it but he didn’t know inhalers could cause suppression.

It’s unknown territory isn’t it, but if I take hydrocortisone now, how can I know if my adrenals can start up? It can take 1-2 years I read. Someone said longer.

runcyclexcski profile image
runcyclexcski in reply to

>>>I have gained 8kg

same here -- up 10 kg after a year of pred. I could not exercise for a year to keep it off (high-rate breathing causes airway constriction, even with the drugs). Abt a month ago I finally got a breathing machine built which allows me to get the exercise I need w/o the fear of attacks. Been able to spin for 30 min a day, hoping to control the weight that way.

in reply to runcyclexcski

Great news you found a way to exercise again!!!

What’s the breathing machine?

I used to dance, do combat fit, Pilates etc and had a gymnast figure. Now I feel fat and lazy. All my clothes hurt to wear because of the flab and any more weight and I’ll be officially overweight. I was fat years ago too actually, which I now realise was from the Seretide too.

It’s awful when medication makes people fat or whatever. I know there are other things too, not just steroids for asthma.

Good luck with your spinning and weight loss!!!

runcyclexcski profile image
runcyclexcski in reply to

Mechanically, the machine is a CPAP machine with a water-based humidifier which I made blow the air 4x stronger (CPAPs blow at 100 lpm, mine at 400 lpm). The air is HEPA-purified, charcoal-filtered, warmed to 32C, and humidified to 70%. The air needs to be 37 and 90%, ideally, I need to double the capacity of the humidifier. It's placed next to the spinning bike, and I breathe through CPAP tubes and a mask. The air is quite warm and humid, but since it's only in the face (not the whole body), it's tolerable/ It would also work with a running treadmill. Dancing and pilates would be hard with it b.c. the tubes can only reach as far. :)

in reply to runcyclexcski

If I could like your post 1 billion times I would.

That method is nothing less than GENIUS 🤩🚲🏅

runcyclexcski profile image
runcyclexcski in reply to

Thanks for the kind words! It's merely what exercise-induced asthma research papers say -- they had asthmatic subjects workout in humid, warm chambers, and found that the airway construction was much reduced. So I merely built what they did, on a smaller scale. I may post the schematics here, and a youtube vid link. I want to put the machine in a backpack, or on a cart, for exercising outdoors, but that would be a real engineering challenge (it's a 2kW piece of kit).

in reply to runcyclexcski

Totally amazing you can do that! Great it means you can do sports again; I hope it works out for outside too at some point. What’s the climate where you live? I suppose a tropical rainforest would be good!

Could I maybe go off on a bit of a tangent?

Fight or flight response: mine stopped a few years ago. What do you know about that as a consequence of exogenous steroids over the years & HPA axis suppression? Possible / unlikely link? Should I ask my endocrinologist to test adrenaline, noradrenaline etc?

He’s retesting my cortisol and ACTH again soon after 3 months on lower doses of Fluticasone. I hope he can maybe check this out too.

So annoyed with myself for not thinking to mention it before!

runcyclexcski profile image
runcyclexcski in reply to

I am here in the UK. Tropical climates are also good for growth of mould, spores, plants, pollen etc., so one can never win by moving. The worst places tend to be polluted, cold, dry cities (e.g. Salt Lake City, Utah in Feb). Everything else I can live with.

I honestly do not know much about pharmacology and hormones! I wish my fight or flight response was non-existent -- I am just the opposite at all times (regardless if I take steroids or not :) ). I think it's a good idea to keep asking your specialist questions, and ask for a 2nd opinion if you are not convinced. As you mentioned, private consultants seem to be more open to explaining and suggesting things.

in reply to runcyclexcski

Ah ok, I hadn't realised you were here in the UK. The seaside is healthy isn't it, I think. Lovely sea air. How do you find the climate where you are now? I'm in the SE of England.

I used to have fight or flight, possibly like you in that it was too much. I think I'm too sensitive and react a lot to everything.

I do link my lack of it to the Fluticasone and HPA axis suppression. I read that ACTH is important early in the chain of reactions leading to eg adrenaline. Then the adrenals are responsible for making some of the body's adrenaline.

My endocrinologist phoned yesterday (NHS) and is going to retest my cortisol and ACTH after Easter. I'd already bought a test from Forth, but my Forth one is also for thyroid and ferritin which I like to keep an eye on. I also increased my levothyroxine recently and would like to check it out. Forth don't offer ACTH, but that's a critical one for me because it was undetectably low when last done earlier this year.

I have now emailed him to say about the fight or flight and whether he can maybe add in the relevant tests when I do the cortisol and ACTH ones. Let's see what he says - hope he sees the email.

I haven't seen any private consultants in the UK - the Forth one responds to blood tests you do with them. She was certainly very helpful when she picked up on my cortisol. I don't have private insurance and seeing as I was sacked recently from one of my two part-time jobs, I need to watch it with money.

I feel anxious about my asthma as well as cortisol now I'm reducing the Fluticasone. Three doctors are following my cortisol and hydrocortisone now (!) I'm not taking it yet. Then the asthma alternative medication is what is still unclear. In the appt it sounded like Biologics, and she ordered RAST tests. I suppose I need to be patient and wait....

runcyclexcski profile image
runcyclexcski in reply to

>>>Lovely sea air

Meh -- the sea can get quite stinky, I am not good with any kind of odors. I do not have private insurance, either, but sometimes it's the choice of paying £200 (1/5 of an iPhone) and get on the treatment, or waiting for a year for the NHS!

in reply to runcyclexcski

Is private insurance only £200 a month, including existing conditions?

I thought it'd be more. I didn't think they'd cover things I've already got (?)

I used to live abroad (different countries) where everyone had insurance, all existing conditions covered by law, and health care was significantly more luxurious than the NHS e.g. no waiting list. I have to say that my NHS doctors are maybe better though, if you're still alive by the time you get an appointment.

runcyclexcski profile image
runcyclexcski in reply to

Nope, it's just a one-off visit to a consultant that is £200. +70£ for a spirometry test. +£170 for a blood test.

>>> if you're still alive by the time you get an appointment.

ROFL. My thoughts exactly.

in reply to runcyclexcski

I LOVE the seaside and it's a dream of mine to live on the coast.

Funny thing about heat for me is that when I was younger, I loved the heat. Ethnically, I am half Scottish (West coast) and half Mediterranean (much hotter country than the UK). Parent from each. As I get older, I think my body is becoming more Scottish

😂 I used to tan immediately, now my skin is translucent (steroids); I loved the heat and sun, now I like cool weather.

runcyclexcski profile image
runcyclexcski in reply to

(much hotter country than the UK).

"they" say living in a warm dry climate is best for lung disease. E.g. Arizona, Spain, or high mountains. I do feel better when I travel there, but one never knows. They still have trees that bloom. I feel the best in Death Valley, but there are no jobs there. And they still have dust storms from time to time. Of the kind that strip the paint from your car -- crazy stuff.

Lysistrata profile image
LysistrataAdministrator in reply to runcyclexcski

Glad this helps you, but I have to wonder if this would work for everyone with asthma even if they were able to make one. What were the inclusion criteria for participants in those trials?

I appreciate it's just on the face but I find warm, humid environments worse for my asthma, even more so than cold these days. I know that isn't the case for everyone (at least one friend with severe asthma is fine in steam rooms, which I find very hard).

But it does seem to be another example of what works for one may not for another. Asthma is so variable between and even at times within people (my triggers, including the environments I find easiest/can tolerate, have changed over time to some extent.)

Hi Lysistrata

Always great to hear your comments. :)

I have put three links below, but there are many more more if you put smth like "exercise asthma dry humid air". One can also put these papers I mentioned in google scholar, and see which studies cited them, if you want a recent review.

sciencedirect.com/science/a...

erj.ersjournals.com/content...

thorax.bmj.com/content/thor...

Many studies seem to be from Norway where they do a lot of sports in the cold climate. E.g. they found that almost half of elite XC skiers have asthma.

N seems low in all of them (never seen more than 100 per study). Perhaps, it's hard to shove more than 10 people at a time into their chamber? They mostly define participants as "asthmatics" (prob a confirmed fall in FEV1?) Some studies focused on humidity only, some on temp only, some focus on both the temp and humidity. Among my consultants, the notion that "cold dry air is a known trigger" seems to be a known fact. I first mentioned the idea of building the machine to Prof Bouchet who runs the pulmonary dept at UCSF, and then to Dr Martin, my consultant here -- both said that it should work, Both agreed that creating a steady flow for humid, clean, warm air at 400 lpm would be too much of an engineering challenge for most people. I.e. it's easier for most people to just take a shot/pill/inhaler :) In my case, the pills and the inhalers help, but I still feel uncomfortable after intense exercise -- which makes it dreadful. It could be that in my case "exercise" always means all-out marathon pain fests.

I found that there is a difference between a "tropical forest" environment (where the air feels stuffy -- prob b.c. of mould, spores, pollen etc) and a flow of pure warm humid odor-free air. I do have a negative reaction to the former, and none to the latter. It turned out to be quite non-trivial (and costly) to find materials that have no odour. My machine is made almost entirely of stainless steel and Teflon.

in reply to runcyclexcski

runcyclexcski

I don't think you realise how much of a genius you are. I really mean that.

Are you going to patent it?

runcyclexcski profile image
runcyclexcski in reply to

>>>Are you going to patent it?

I am an open-source proponent, so I will die poor :) But I also realize that unless one charges money for something they won't believe that it works.

in reply to runcyclexcski

And it could maybe be adjusted to suit each individual so eg Lysistrata who wouldn’t want hot or humid air.

Lysistrata profile image
LysistrataAdministrator in reply to runcyclexcski

Thanks for the links - will look shortly. I'm definitely not disputing that cold dry air can be a trigger - I'm aware it's a common one in asthma and I struggle with it at times, just currently less than hot, humid environments. However, stress and cat allergies (for example) are also known common triggers in asthma, but they aren't triggers (or allergies) for everyone! The same friend with severe asthma I mentioned who is fine in steam rooms is also fine with lavender pillow spray and mango - I struggle several feet away from small amounts of either.

My specialist respiratory physio at the asthma clinic mentioned the unusually high number of elite athletes with asthma, but felt it was more of an induced response to training and the training environment than full-on asthma. I'm aware that's one professional opinion and not research, but will see what the links say (and how many participants were elite athletes vs average people with asthma). (I'm not sure how I got onto this topic with her, as I have zero interest in elite athletics besides watching it on TV sometimes!)

I can't say I'm able to engineer my environment to the degree you've mentioned and nor could most people as you say - as you've already mentioned, it's a massive challenge and not very portable or practical. I get the appeal of a drug-free approach but it needs to work practically on a large scale (as do drugs - penicillin wasn't much use until it could be manufactured and distributed), as well as providing the relevant clinical improvements. The challenges of personal environmental control at this level seem pretty huge, and the personal drawbacks of it are not insignificant. I'd rather take meds and travel/go to a restaurant etc without having to wear something on my face constantly (not an opening for a COVID mask debate for anyone reading btw, I mask up when needed but will be happy when I don't need to).

in reply to Lysistrata

So true: someone who’s successfully settled on a steady treatment with no issues isn’t going to need a forum to discuss it.

>>> (as do drugs - penicillin wasn't much use until it could be manufactured and distributed)

Very good point! Mass-production always makes things cheaper. Which, in turn, requires a large corporation becoming interested. Which, in turn, requires a patent (a 10-20K value) etc etc. I think the papers I cited were more about them wanting to know the mechanism of EIA, rather than helping people avoid it. The exercise rooms they used cost many 100s of Ks -- even less feasible than my air blower.

They do sell "humidifying" and "warming" masks, but I did not find them effective for high-intensity exercise.

Lysistrata profile image
LysistrataAdministrator in reply to runcyclexcski

Many factors besides just cost though, for both drugs and devices. It needs to be scalable in the first place, then have feasibility as a device people are willing to use regularly; it has to be fairly easy to use and not intrusive or difficult to manage, as with drugs where complex regimes are shown to reduce adherence.

People whose disease already limits them majorly will be more willing to try something to help (a drug or device) even if it's not ideal, but this is a minority of people even with severe asthma - I'd balk at a system requiring me to wear a mask everywhere, all the time.

There's already a push to trial drugs in a more real world setting instead of the highly artificial world of the clinical trial, which also tends to exclude patients with anything 'messy' like comorbidities. I know very little about medical device trials or approval, but it's probably even more complex.

Lysistrata -- I agree with all of your points -- scalability etc. I never planned to make any £££ from the machine, and I made it for my own sake (to be able to exercise). I guess for me it's quite important to be able to stay active. I am also quite used to wearing a mask everywhere (did it way before covid).

Lysistrata profile image
LysistrataAdministrator in reply to

I agree with Hilary on this. The way to tell if your adrenals are recovering is regular testing. I stayed on my ICS, took hydro but tapered that down, had pred if I got admitted, and they kept testing. I don't really respond to pred for asthma but they often tend to give it in hospital and the attitude was very much that if they felt I needed it for asthma they would give it, and if I needed hydro for asthma/adrenals (eg extra for sickness) I should take it.

It isn't safe to stop everything (beyond a temporary hold for tests). You did also mention you have been on some courses of pred in the past which may have contributed.

Do you mean below that you can't access the post about adrenal insufficiency? This works for me, try again? healthunlocked.com/asthmalu...

in reply to Lysistrata

Very short pred for lung infections eg 5 days once a year. I always take antibiotics for lung infections not always pred.

Thanks I’ll try the link again

in reply to

Link works for me now! Thanks 👍

in reply to Lysistrata

I haven’t stopped anything, I’m tapering off the inhaler. 8 weeks on each reduction.

Lysistrata profile image
LysistrataAdministrator in reply to

I know you haven't stopped anything yet, but I meant longer term. And if you need steroids then you need them - that is a more immediate need than working out your adrenal function. As I mentioned (even acknowledging people are different), I was able to have tests for my adrenal function while taking hydrocortisone (I just stopped 24 hours before the test), and I was able to taper the dose of hydro down.

in reply to Lysistrata

I wish they’d told me to stop the inhaler 24 or 48 hours before the synacthen test but they only said don’t take them on the morning.

The lung function test said no inhaler for 48 hours

I’m not on pred or hydrocortisone. Last pred 2019.

But hydrocortisone was prescribed following my cortisol levels. The thing is they didn’t take the steroid inhaler into account.

Such a mess isn’t it with the asthma medication and HPA axis 😧

It’s so kind of you and the others to respond to my questions so thoughtfully and I’m learning so much 💜

in reply to Lysistrata

I’ve ordered a private test for cortisol and will do it this week.

runcyclexcski profile image
runcyclexcski in reply to

>>>I’ve ordered a private test for cortisol and will do it this week.

Good move. May take months through the NHS :(. See if you can get a doc who has a double affiliation with the NHS so that she can transfer the result records.

in reply to runcyclexcski

Great tip thanks!! 🙏

The hospital tested my 8am cortisol in December and in January then twice in the short synacthen, but all before I started tapering off Seretide.

Mine ranged 10-48 nmol/L where the normal range was about 190-600 nmol/L or something (can’t remember exactly).

The hospital levels were consistent with the Forth results from November and my GP views Forth as trustworthy (endocrinologist didn’t initially).

I will definitely forward the results to my GP and endocrinologist and probably the respiratory one too because they’re tracking my Fluticasone tapering.

Forth lab tests are checked by an experienced endocrinologist who was the first Dr to find my adrenal problem!

I’ll let you know too. I can’t wait to see if it’s increased at all. I’d test the ACTH ideally but Forth don’t offer it. Hospital said mine was undetectable both times (January and synacthen)

Do you know your levels of HPA axis function, Runcyclexski?

runcyclexcski profile image
runcyclexcski in reply to

>>>Mine ranged 10-48 nmol/L where the normal range was about 190-600 nmol/L or something (can’t remember exactly). The hospital levels were consistent with the Forth results from November and my GP views Forth as trustworthy (endocrinologist didn’t initially).

Love the numbers and the critical checks! I did not realize that the normal hormone levels were in the sub-uM range (good to know).

in reply to runcyclexcski

You'll never guess what - my endo just phoned and is testing my cortisol and ACTH again after Easter.

He was sort of puzzled why I felt bad on hydrocortisone (with cortisol levels that mean you'd normally be dead or thereabouts) and so had stopped taking it after 2 days. he wanted to know how I felt on it. Anyway, he accepted I'm not taking it and have it on standby 👍😀 Respiratory knew, I told them in the appt.

Quote runcyclexcski : Love the numbers and the critical checks! I did not realize that the normal hormone levels were in the sub-uM range (good to know).

Oh I do love to understand why, how, what, when, if, whether etc. 😂

Endo couldn't believe I was able to talk with 10nmol/L cortisol when he rang in January 🤣 I was working, walking the 🐕 , etc

in reply to

not quite sure what sub-uM is...? 🧐

Only did chemistry aged 12-13 stopped end of y8 . 😟

runcyclexcski profile image
runcyclexcski in reply to

uM = 1 micromol per L, i.e. 190-600 nmol/L == 190-600nM == 0.19-0.6uM

in reply to runcyclexcski

Now I get it!!! I hadn't thought of µm 🤯

If you're in the US, is cortisol measured in mcg/dl?

Found this on UCLA Health:

Normal values at 8 a.m.are 6 to 23 mcg/dl. Normal value ranges may vary slightly among different laboratories.

Note: mcg/dl = micrograms per deciliter

runcyclexcski profile image
runcyclexcski in reply to

Not in the US anymore. Decilitre == 0.1L ... what a wacky unit! :)

Let's see. Google says the molecular weight of cortisol is 362.46 g/mol,

23 mcg per 100 ml == 0.23 mcg per ml;

0.23/0.362 = 0.6uM -- which is your upper range (600 nM);

So, both countries agree despite the wacky units!

in reply to runcyclexcski

Absolutely LOVE how you're so great at maths 🤩 I'm going to try to learn this! ... corrections extremely welcome:

My cortisol varied between 10-48 nmol/L

Taking the lowest of those, 10nmol/L is therefore 0.01 uM.

The US minimum of the normal range is 0.06mcg per ml

0.06/0.362 = 0.166 uM --> 166 nmol/L

My hospital minimum was 190 nmol/L

So

1) The lower limit of the normal range at UCLA 166 nmol/L is lower than at my hospital - it was 190 nmol/L I think.

2) My cortisol was 0.01 uM but should have been at least 0.166 nM according to the UCLA range.

Tried to correct own maths mistake.

😂 so much fun.

Are you a maths or physics lecturer or something, runcyclexcski ?

in reply to

Something is wrong with my maths, maybe a decimal?

0.01 to 0.166 sounds more likely

🤯😀

runcyclexcski profile image
runcyclexcski in reply to

>>>0.01 to 0.166 sounds more likely

Yes, this sounds correct. I am a biochemist; I would have no clue about proper math (calculus etc...) that physicists and math people do!

in reply to Lysistrata

I tried a few times but couldn’t read the page you were linking to.

Thanks for all your replies, I really appreciate it!!!

I will answer your questions:

I went to endocrinologist and said I think it's the asthma inhaler. He didn't believe my cortisol was low. He retested it twice and did short synacthen, then diagnosed hypoadrenal. Prescribed hydrocortisone:

8am serum cortisol was tested 5 times since the autumn. Highest just under 50nmol/L lowest 10nmol/L.

Short synacthen test (ACTH Stim) 34 starting point, 140 nmol/L peak.

_________________________________________________________

Angelgoth Thanks for your reply.

I did go to an NHS hospital endo. But he's clueless. I know more from doing a bit of research myself. Honestly, it's scary. At least he did give me hydrocortisone, but I felt terrible on it. My asthma inhaler is flooding my body with cortisone. I will need it as I taper off though.

____________________________________________________

CDPO16 Thanks for your good wishes.

Yes, steroid inhalers can, in certain people, suppress the pituitary output of adrenocortico hormone or whatever it's called (ACTH) which in turn doesn't get the adrenals to make any cortisol. In fact, I don't have any DHEA either. Doctors don't seem to know the first thing about it 😢

Fostair's beclomethasone can cause AI but is less likely to than Fluticasone. Also, there are certain genes that make someone more likely to get it. Many people are ok on Fostair, but it could be worth checking your 8-9am cortisol to see considering you've been on a high dose for a long time. I hope you remain well on it, most people do.

___________________________________________________

MikeWhite Thanks for your reply and advice.

My endo doesn't know anything about inhalers and AI; in fact he doesn't even seem to realise not all AI is Addison's. He didn't believe my cortisol was low because (1) no darkened skin (2) blood pressure not low - two symptoms of PRIMARY adrenal insufficiency. 😰

My endo has not mentioned much about hydrocortisone. Just prescribed tablets.

I expect I will need to start taking them as my inhaler dose decreases and I hit the point where the dose of inhaler steroid goes under my physiological requirement or whatever medical people call that. So far, my inhaler is providing more than my body needs. My symptoms are more like Cushings than hypoadrenal despite my serum cortisol levels.

No mention by anyone of injections of hydrocortisone. I'm not expecting my endocrinologist (who I suspect only knows about diabetes which I don't have) to know about that.

I got more sense out of my GP than the endo when intially discussing my extremely low cortisol.

__________________________________________________

Lysistrata Thanks for your reply to my post.

Yes, less common on inhaled than oral, but I wonder how many cases are undiscovered because nobody is checking cortisol in people on inhalers? Fluticasone sounds like the worst and my bad luck that's the one I've been taking.

Great you've recovered, that's so good! Not good your asthma isn't controlled though. Have you been offered Biologics? Do you have an opinion on biologics at all? I've been offered them.

I wonder if your Fostair is providing systemic cortisone? Especially as you say you're on high doses.

It is respiratory who want me off steroids because of the AI, which they believe is from the inhaler (I actually completely agree that's the reason). It's a gradual process, tapering off slowly. But yes, very scary and I feel a bit abandoned to my fate now after 3 weeks and no letter following the very helpful respiratory appt.

They added Montelukast 3 weeks ago, and so far it is helping my rhinitis and lung mucus. they offered Biologics, but since the appt I haven't heard anything - maybe they're waiting for the RAST test results? I know I have multiple allergies.

I'm happy to hear you say it is possible to recover and that you tapered down till you didn't need it. 👍

The endocrinologist refused to believe inhalers can cause it. I suppose his respiratory colleagues might have corrected him, along with seeing my undetectable ACTH.

I didn't know it wasn't recommended for anyone with asthma to take no inhaled steroids at all. I think the respiratory team were planning alternatives: Biologics (Xolair?) + Montelukast. I haven't heard more yet though and am currently on 50% of my inhaler dose and Montelukast (tapering the inhaler was 8 weeks on 75% and now week 4 on 50%). I need Ventolin most days now, and of course the hayfever season is approaching.

Why don't doctors know about this? Their gap in knowledge is enormous. 😥

Lysistrata profile image
LysistrataAdministrator in reply to

I mean I suppose it may be possible to individualise treatment without ICS - I'm not a doctor. I do know the research says that ICS in general is needed for asthma, even non-eosinophilic and/or non-allergic asthma, whereas for COPD it is only useful above certain blood eosinophil levels.

If you are at the level of considering biologics then this seems like a very surprising decision. I don't really understand why they are in such a hurry - with me they definitely thought they would be able to potentially restore adrenal function, but they didn't compromise my asthma treatment to do it. And frankly my asthma team is fairly useless and downplays everything despite being tertiary specialist care so I was almost expecting them to tell me I didn't need my treatments! I did get lucky with endo though - but my friend under the same asthma team had them trying to manage her AI themselves and they were awful - they have now thankfully referred her to endo.).

Ideally yes you will be able to try lowering the dose of steroids you need for AI, but trying to get you off ICS totally seems like they're prioritising AI at the expense of asthma when they should be weighing up both. And your levels are really pretty low, which I find concerning when you aren't getting good advice about what to do in physiological stress situations. Mine were never that low! I had low-middling baseline levels (low 200s) but they didn't respond much to stimulation in the short synacthen test until my last one when they were in the 400s and then shot up as they should. But you seem to have really looked into AI and know the score which is helpful - as you've found, many doctors are scarily short on AI knowledge, and I had to educate myself and often had to advocate for myself on hospital wards when they wanted to do ridiculous things.

My Fostair probably does 'leak' a bit into being systemic but it doesn't seem to cause problems for me like oral steroids did. You must be pretty sensitive to it which is unlucky, but I do also agree that it should be much better known that inhalers can cause AI and that clinicians shouldn't ignore that.

I'm not eligible for biologics as I don't have the right kind of asthma (not eosinophilic or allergic). Annoying but it isn't too bad at the moment - the pandemic and not working in central London/not catching things have helped as I haven't had an admission in 18 months now which is amazing! (I used to have them fairly often; it's still definitely there but I can handle it now). If you are eligible then they can be really helpful so I would definitely go for it - but they need to be careful until then and not try to force the steroid reduction too fast.

Same here with no lung infections during the pandemic- we did self imposed shielding. First time in my life I didn’t have a lung infection in the winter!!!

I think my respiratory team are at least better than my endocrinologist. Not difficult I admit.

The only way for me to see if my ACTH and adrenals can start up again is to reduce my inhaler. If I don’t then they’ll remain suppressed for ever.

I did ask about Alvesco but the consultant said they wanted me off steroids. Fair enough.

Part of my asthma is allergic I don’t know to what extent. No idea about eosinophils never been tested or mentioned.

Exactly, doctors are scarily short on knowledge of AI. Especially my endocrinologist. Was considering asking to go up to Tooting or central London but the local hospital is more convenient. Really crap bunch of endocrinologists though, goodness they’re thick 😰 hard to imagine they managed to qualify.

Respiratory team seem to at least have knowledge of inhalers causing AI. I was relieved in that appointment after the endocrinologist saying he didn’t believe my cortisol was low and inhalers can’t suppress it. He must have had a shock when weeks later he finally looked at my blood results from his lab and cortisol was 16. He then admitted he hadn’t requested anything else so I had to go back to do ACTH etc 🥺

I read Biologics can cause cancer and all sorts. No stats for long term use because they’re new. (?)

Lysistrata profile image
LysistrataAdministrator in reply to

I was on Fostair high dose throughout and hydrocortisone tablets, plus some short courses of steroids with admissions, and mine recovered ok - but could be difficult if the AI was caused by ICS. Would switching to a different ICS be an option to help? The Pituitary Foundation has an endocrinology nurse helpline which may be useful if your team is not helpful.

If you're at the local hospital I'm wondering how experienced they are with asthma and if they are able to actually get you on the biologics themselves or would need to refer you - if they haven't tested eosinophils and IgE they don't really know if biologics are an option or not for you currently, as they are targeted treatments (hence why I can't have them).

Tertiary care teams are not perfect by any means, but they should be able to assess you more fully and look at your options in more depth. I'm honestly still sticking on this no ICS thing, and the lack of testing for eosinophils. I feel that you need a better understanding of your asthma, and local teams can be hit and miss with that.

My work has involved reading the scientific evidence about asthma biologics and I haven't seen anything about increased risk of cancer (nor can I currently think how that would work with their mechanism of action). The term biologics covers a wide range of drugs for different diseases so statements about their side effects as 'biologics' isn't generally helpful without more specifics.

Of course asthma biologics, like pretty much all drugs for anything, have side effects, and some people can't tolerate those, but generally they can be managed or they can try a different one. Biologics for other diseases may in some instances cause serious side effects which have to be weighed against the effects of the disease, but that is generally dependent on how the drugs work and what they are treating.

Omalizumab (Xolair) has actually been around for a while too, so we do have an idea of its longer term side effects.

in reply to Lysistrata

Lysistrata

Thanks for your amazing post!!! Just seen it and will reply soon. Need to walk the dog now 🐕

Apparently my local hospital respiratory team are on the AsthmaUK good list 😀

It sounded like they would deal with Xolair.

Lysistrata profile image
LysistrataAdministrator in reply to

AUK good list of resp teams? I actually wasn't aware of that, unless I think of it under a different name (though cynically wondering if mine are - I'm not mentioning who they are on here. Can be quite individual though). I still think someone needs to actually do a bit more testing so they know what your options are!

in reply to Lysistrata

Yes AsthmaUK told me it was on the good list. I think the Head of Respiratory is greatly respected.

They did lots of RAST tests, lung function, short synacthen, don’t remember eosinophils though - how do they test that?

I’ve got loads of allergies. A great selection 😡 like raw fruit and vegetables, legumes, honey, dust mites, various pollens, animals, cleaning products, body lotions, latex, smoke and so on.

Lysistrata profile image
LysistrataAdministrator in reply to

Oh, perhaps they just never told you - would make more sense than not doing it but you never know! It's a blood test for eosinophils and also one for total IgE, not hard, but if they're mentioning bios it suggests something was in the range for them. They could have done more to communicate this, but that isn't a strong point of most respiratory doctors I've met.

My cynicism around respiratory clinics and their heads is fairly high by now, but it does sound like they're doing some of the tests that tertiary would do. With a lot of allergies, Xolair may be what they have in mind.

in reply to Lysistrata

The RAST tests are IgE for each thing aren’t they? I’ve had RAST tests before and a long list of allergies, but done abroad so the NHS didn’t know. I tried to get it added to my medical record but they didn’t- maybe too old or not a trusted lab being in a different country

That was ages ago but I think they’re still the same, although my allergies were suppressed quite a bit by Seretide eg hay fever.

Just found eosinophils tested by GP last year in a full blood test. It says normal at 0.4. I’ve attached a screenshot. What do you think?

Eosinophils
Lysistrata profile image
LysistrataAdministrator in reply to

Yes I think so but I think you also need a raised total IgE (over 30) for Xolair. That eosinophil count would be enough for the biologics targeting eosinophils, if it's within the last 12 months, but you would also need to have had at least 3-4 exacerbations requiring oral steroids or A&E trip/admission to hospital in the past 12 months for those. I can't remember the exacerbation requirements for Xolair off the top of my head.

in reply to Lysistrata

I don’t think they did a total IgE but I’ll check tomorrow.

The 0.4 eosinophils was April 2021. So you mean it’s high?

I usually have about 2 lung infections a year then antibiotics and pred. Never hospitalised. Seretide was fantastic for my asthma control except when I caught a cold.

Lysistrata profile image
LysistrataAdministrator in reply to

For asthma, yes, you need 0.3 or more for those biologics so that counts as raised (it wouldn't if you were a non-asthmatic getting a full blood count).

in reply to Lysistrata

That’s very interesting. I’m still waiting to hear about my RAST tests and the hospital letter.

Montelukast is pretty good I’m finding so far.

I’m in the middle of tapering down my fluticasone to try and reduce the effects of steroids on my body. My resp team say I can’t come off prednisolone as my asthma would spiral out of control so they are switching it to ciclesonide to see what impact it has on my cortisol level as it’s very low. I haven’t been offered the option to see an endocrinologist and don’t know if/when I should push for this. I’m not eligible for biologics either and it feels like there’s no hope sometimes.

Hi Tigerlils

Tigerlils

Sorry to hear you feel so disillusioned as well. Join the club :-(

What’s your 8am cortisol level ?

I was referred to the endocrinologist due to critically low cortisol. The respiratory appointment came later.

To be honest my endocrinologist was no help at all, the respiratory team are more knowledgeable by far.

I think ciclesonide is a good ICS because apparently it’s far far less likely to get out of the lungs and affect bones, hormones etc. I asked about that.

Why aren’t you eligible for Biologics?

Tigerlils profile image
Tigerlils in reply to

I’ve been at the severe asthma service for over two years now and the recent switch to ciclesonide is the first change in my treatment that’s been suggested. So, yes, feeling pretty disillusioned! I’ll be glad to get off the fluticasone as I’m on a pretty big dose.

I’m not eligible for biologics as my IgE levels aren’t in the right range although I’ve been on pred the whole time so it’s not necessarily been an accurate assessment.

in reply to Tigerlils

I heard ciclosenide is much safer than Fluticasone at least for the adrenals

Someone on this forum mentioned eosinophils- have you maybe got a high enough level of those for Biologics?

Are you keen to go on Biologics?

Tigerlils profile image
Tigerlils in reply to

I’d try biologics if I was offered the chance but they’ve said I won’t be. It’s been a rather frustrating two years with no progress and I had had high hopes for a specialist service!

in reply to Tigerlils

Did you have RAST tests or a total IgE test?

Tigerlils profile image
Tigerlils in reply to

Both

in reply to Tigerlils

I just read the total IgE can’t detect food allergies

four4 profile image
four4 in reply to Tigerlils

According to some literature fluticasone is 2 times as potent as ciclesonide. The advantage of ciclesonide in AI is that its systemic absorption is minimal due to its small particle size. If a trial of switching fluticasone to ciclesonide is needed, the dose of ciclesonide is needed to be doubled, i.e. 1mcg of fluticasone to 2mcg of ciclesonide.

Due to AI issues, I have tried this switch and it is successful. At 1st the dose of ciclesonide exceeded its maximum dose. But later on it could be tappered down slowly according to my asthma symptoms.

My condition after the switch is that my asthma could be under controlled and adrenals remain low but do not deteriate for years. Oral steroids is unnecessary. I am now on ciclesonide 640mcg per day (max dose). And beclomethasone nasal spray two puff daily.

But I am not sure if this is possible in your case or not. As your asthma control is different from mine.

You may suggest this alternative to your doctor to seek his advice. I hope my experience could give you useful reference.

in reply to four4

Hi four4

That’s really helpful and interesting.

I actually asked my consultant about switching to Alvesco but she said they want me off steroids.

How about the LABA? I’m on Seretide which is Fluticasone + Salmeterol

Do you need hydrocortisone for your adrenals?

Great news it’s working for your asthma!

four4 profile image
four4 in reply to

I am not on hydrocortisone. I am not on LABA as well, as LABA made my breathing issues worse. This may be due to the fact that I hv concurrent anxiety issues.

If I can take LABA, a lower dose of ciclesonide could be adequate to manage my asthma.

Tigerlils profile image
Tigerlils in reply to four4

Thank you. I’m on 320mcg per day at the moment and moving to 640mcg when I come off the remaining fluticasone in about three weeks time. I hadn’t realised fluticasone had such an effect so I’m hopefully things will improve for me.

four4 profile image
four4 in reply to Tigerlils

Good. Ciclesonide is a preferred ICH in adrenal issues.

in reply to four4

That is what I have learned too. It's great you're on that and not Fluticasone!

It's also really good you are doing ok on the ciclesonide alone. LABA can't be good for our hearts.

four4 profile image
four4 in reply to Tigerlils

Surely after you completely taken off fluticasone, ur adrenals will no longer be suppressed and things will improve. Although ciclesonide will still suppress ur adrenals, but in a much less extent, condition will become much better.

in reply to Tigerlils

I hope your adrenals are still fine.

I have taken Seretide for too long I think, although I’m trying to gradually reduce

Fluticasone is a pile of shit and should be prescribed with a massive warning of adrenal insufficiency as a not uncommon side effect

No other ICS is anywhere near as bad

Tigerlils what was your Seretide dose? Mine was 500mcg a day

Tigerlils profile image
Tigerlils in reply to

I can’t take seretide so fluticasone has been one of my few options. I was on 2000 mcg a day.

in reply to Tigerlils

Do you mean Fluticasone on its own?

Seretide contains Fluticasone and Salmeterol so it’s presumably the LABA part you can’t take?

2000mcg a day is extremely high isn’t it. 😕

Tigerlils profile image
Tigerlils in reply to

Yes on its own as I can’t tolerate LABAs. And yes it’s a very high dose and even that plus pred doesn’t control my symptoms sadly.

in reply to Tigerlils

Then I don’t get why they said no to Biologics (?) at least to try them?

Fluticasone without the LABA wouldn’t have worked for me either.

Tigerlils profile image
Tigerlils in reply to

I take tiotropium as a way of adding in a LABA like component. All they’ve ever said about biologics is that I don’t qualify.

in reply to Tigerlils

My Mum has tiotrpium in her nebuliser with sodium chloride 7% and salbutamol

I’m still waiting for my hospital letter so maybe they’ll change their minds about the Biologic depending on my RAST results (?)

my 8am cortisol was 14 nmol doc didn't even bother with anymore tests just diagnosed adrenal insufficiency, then my cons gave me advice about sick day rules and taking pred at thr right time etc

in reply to Angelgoth

My level is similar and the endocrinologist wasn’t going to do the synacthen test but then decided to go ahead. I haven’t heard anything about sick day rules but am early in this process.

I love your forum name. Are you a goth? I had a wonderful friend abroad who’s a goth, and I know another amazing person in London who’s also a goth but only looks like one when not at work. My friend abroad told me a bit about goth culture, so interesting.

Yes I'm a Goth have been for many years. I'm also a DJ aka DJ Angelgoth

in reply to Angelgoth

Wow 🤩

I sent my blood to Forth today. I’d requested cortisol, thyroid and ferritin.

I’ll let you know when I get the cortisol result. Fingers crossed it’s increased after 3 months now of tapering off Fluticasone. If not …. 😬 Although I’m still on Seretide and will hopefully manage to reduce further.

Next week my endocrinologist is testing cortisol and ACTH again. I hadn’t known that when I bought the Forth kit.

Where am I on this? At the pointy end of the pale blue I think, heading towards the physiological dose presumably. Source of slide: Prof Emma Baker

Taper of steroid

Hey Lysistrata Hey runcyclexcski

hey anyone else who's interested 😀

Fantastic news about my cortisol

My cortisol tested on 11 April 2022 is now 235 nmol/L (166-507) up from 19 nmol/L in November and 10 nmol/L also in November. 🥳

Still on Seretide, but 1/3 of the dose I used to be on, and with the plan to continue tapering off and then NEVER take it ever again. Hopefully!!

I assume this means I can say for certain the hypoadrenal blood levels were caused by exogenous steroids suppressing my HPA Axis (?)

No hypoadrenal symptoms at all (yet).

My Cushing type symptoms are getting less and less, although still gaining weight. that will be the excess testosterone and prolactin from the testosterone HRT following undetectable levels of T in November. Am now stopping the testosterone completely as it seems my body has started making DHEA again (guesswork - DHEA was not retested this time)

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