New here, help with adrenal insuffici... - Asthma UK communi...

Asthma UK community forum

18,261 members22,536 posts

New here, help with adrenal insufficiency

Asthmagenie profile image

Hi, I’ve been reading posts on here for a good while and can see what a great resource it is. My 10 year old son has had a very bad 2.5 years with asthma. He is an allergic kid (bad genes) IgE levels sky high and allergies diagnosed by blood tests to dust, various pollens, moulds. Also food allergies-nuts, prawns, wheat, legumes though unsure if all of these actually cause symptoms but they are excluded from diet. Consultant have thrown loads of medicines at him without much luck until started Xolair in December which is going really well. We’d be more grateful if his adrenal glands hadn’t been messed up in the process (diagnosed adrenal insufficiency and on hydrocortisone) after Seretide at increasing unlicensed doses, numerous courses of prednisolone, two injections of triamcinolone steroid one of which has caused a 3cm indentation in his skin! Too much to say in one post but I am looking for help and advice with adrenal symptoms. He apparently doesn’t fit usual profile as stomach ache is main one and Consultant said this is not a symptom and must be some other cause. But Gastroenterology not interested and discharged him with vague and useless IBS diagnosis no investigations only ruling out colitis and coeliac from poo. He also gets headache, dizziness, feeling cold and exhaustion at its worst. Is it unusual to get adrenal insufficiency...he’s only a child 😢? Are his symptoms that unusual? How and when Will it get better. Feel we need second opinion but not sure who/where. Also having seen the way the steroid ‘dissolved’ fat in his skin worried about what else it’s done to him...eyes, bones, etc. Steroids are no longer our friend!!!

15 Replies
Lysistrata profile image
LysistrataCommunity Ambassador

Hi Asthmagenie,

Not an expert at all but i am an adult with severe asthma who now has adrenal insufficiency.

I would say you should ask for an endocrinology referral. Asthma consultants might know the basics of AI but I am at a severe asthma centre and they referred me to endocrinology admitting it wasn't their main thing and they preferred endocrinology to handle it. I think AI can have a lot of different symptoms! I also found the Pituitary Foundation website and nurse advice helpful before that. There is another useful website I think which I will look up and post where you can order information. Your son should really have a medical alert bracelet and emergency hydrocortisone if possible - lots of useful advice on the websites but also think referral useful even if to specialist nurse rather than consultant.

Hope this is useful!

Hi my son is 11 and also has adrenal insufficiency is your child on hydrocortisone tablets or injection and are they on prednisolone every day

Has your child been seen by endrocrinology

Thanks very much for your informative replies and sympathy that you’re in the same boat.

Yes my son has been referred to Endocrinology. However from diagnosis to next appointment is 6 months -in May -and I don’t feel that is nearly enough when you’ve been diagnosed with another life threatening condition???

He has hydrocortisone tablets 3X a day and has an injection kit for emergencies. By the way that wasn’t easy to get hold of as company has a manufacturing issue not expecting to fix until next autumn!!! Very dubious as they’ve had it before and allows them to charge NHS higher ‘emergency prices’. I was scrabbling around at different pharmacies and got last two bottles in Boots. Suggest you check dates on your supplies if use the premade solution. The needles and glass vial to break open is scarey when compared with an Epipen. I can’t imagine actually giving that injection. I have looked at videos on Utube of people giving it. Have you done it?

What is your experience of adrenal crisis? Would I recognise when injection was needed. I understand the sick day rules and have double dosed tablets. My son hasn't ‘collapsed’ but he has been very sick and ended up on 75% school attendance last term before and after AI diagnosis . He is much better now but I think that may be as much due to starting Xolair and big improvement in asthma and less stress on his body?. He hasn’t needed any prednisolone or even reliever. Just a few extra puffs of Symbicort occasionally. It’s a four month trial so hope it continues. Ironically his IgE was too high for it initially but triamcinolone injection got it down into range. I recommend it if you fit criteria. I feel he had to go through a lot to get it, not least AI.

One more question do you get worse symptoms after exercise? Abdominal pain and nausea seem to come on during football matches which is heart breaking as he loves to play. Thanks

Dear Asthma genie You might look up Buteyko Clinic. Buteyko teaches another kind of controlled breathing to help control asthma. It has helped me enormously. Does a lot for childhood asthma. Patrick McKeown is marvelous and himself asthmatic but now controlled. All the meds do little and Prednisone hard on children and adults. I hope this helps.

Lysistrata profile image
LysistrataCommunity Ambassador

6 months?! That seems longer than I thought was allowed. Could you ask if he could see a specialist nurse sooner? I had to spend ages on the phone getting my test arranged and then there was a huge amount of faffing while they worked out where to.send me, despite the registrar clearly stating I needed to see a specialist nurse - they initially tried to refer me to a random cons with a really long wait. The endo service at my hospital is good medically but the admin aghh! I wonder if you might get your son seen sooner if you ask for the nurse, as they decided I didn't need to see a cons in the end. Or at least ask if he could see nurse meanwhile?

Or has he seen a nurse already to get the injections? I was supposed to have another appt to get my kit and be taught how to but as I didn't have time and energy for yet more endless calls, it hasn't happened. I don't think I would feel confident without training! I have luckily never had a crisis but was given a lot of useful information by the nurse and was very clearly told when to go to.A and E. I am not sure how to tell in another person, will leave that to Sarah0291 as a parent. For myself I feel dizzy and faint and incredibly slow and sluggish if I have low.cortisol. I will.dig out my info and see where it comes from.

I don't get the nausea as a symptom luckily but do find my symptoms come if I push myself too much physically so it could be related. I wonder if it's worth getting in touch with the Pituitary Foundation helpline while you wait aa that was so helpful for me.

Glad your son's asthma is better at least. Sounds like he is doing well on it so hopefully will continue. I'm not eligible due to having non-allergic asthma but have friends eho have found it amazing.

My son had an immediate referral and was seen the next day, I have been trained on how to do the injection as my son isn’t able to take the tablets as they would make no difference to him as he is on a daily maintenance dose of prednisolone and he has been in adrenal crisis before, he couldn’t keep water down, couldn’t speak, couldn’t move or even lift his head off a pillow all he was constantly sick

Also xolaor made no different to my son who has got a diagnosis of severe allergic persistent allergic asthma, adrenal insufficiency, hyper mobility and Harrison sulcus due to the amount of attacks he has he has been in hospital for 3 weeks and within the last week he has had 3 attacks all with no signs of going to happen

Has ur consultant also put an alert on the ambulance service because as soon as I administer the injection I have to dial 999 straight away but my sons adrenal insufficiency is severe and it won’t get any better with the amount of prednisolone he on daily, there is a chance that ur child might improve if not needing regular prednisolone, and also if u have not had the training on how and where to administer the injection from a trained endocrine nurse then I wouldn’t be injections this, I would contact ur local go to administer it and then get your child straight to hospital for immediate emergency treatment, my sons asthma is so severe he has been unconscious 4 times in 6 months and needed severe treatment

Has your consultant also mentioned a bone density scan?

Oh Sarah, you and your son have really been through it. Do his asthma attacks in anyway seem to bring on adrenal crisis? Before my son’s adrenal insufficiency was diagnosed, we often saw that asthma came first and then the stomachache, headache, tiredness, dizziness, feeling cold, nausea and sometimes vomiting. Though oddly not all of it improved with prednisolone. In fact, it seemed overtime, that prednisolone was working less and less. I wondered if it was possible to become ‘resistant’ to prednisolone?

Yes, the body becomes dependent. I kept cycling with it and ultimately my asthma never got better just had momentary relief.

Sorry I didn’t write clearly son did get an appointment with Consultant a couple of weeks after the Adrenal test. I was shown the injection but I don’t feel trained up enough to do it. There was a lot to take in and an appointment six months later seemed too long. Didn’t get told about ambulance service alert or medic alert bracelet. Where best to get that? Don’t want a heavy metal one.

The hydrocortisone tablets didn’t seem to have a much of an effect but they were also keeping the dose low to try and force the glands to work more. (By the way initially given ones mean for ulcers until a friend said they don’t work for AI and go through body undigested!! Didn’t give me much confidence). I have had conflicting information though. The consultant seemed to think he would recover if kept off prednisolone (like you said Sarah) but nurse has said it’s unlikely. She also said they wouldn’t do test again to see if it was getting better! However she did also say that she had seen very few children with adrenal insufficiency secondary to steroid use .Respiratory clinic made it sound more common. I also asked about other side effects of steroids and where that would be looked bone density etc but she didn’t really know???. Like Sarah’s son, my son has has effects on rib cage from asthma. Seems to me to be a mix of pigeon chest and flared out ribs and asymmetric too. Respiratory clinic said he could decide to have surgery after 18. Sarah has your son had the injected steroid triamcinolone? My son has had 2. I feel very ambivalent towards steroids but I have to say the first one he had worked brilliantly for 4 weeks. The second one did not work at all. The great big dent in his skin/fat on his bottom makes me think it didn’t go properly into the muscle. Sarah, has consultant talked about the newer antibody treatments for your son. If he is nearly 12 I think one of them may be approved???Apologies if you’ve been through all these thoughts and routes before. I can only offer empathy. Being stuck in hospital last summer for tests was rubbish and my son wasn’t even sick most of the time!

PS this week I tried a new way of getting help from Endocrinology dept. Just turn up in clinic! We have to get Xolair injections every 2 weeks at hospital so ‘popped in’. I left a message on their answerphone saying we were coming first. If they had called me back, I wouldn’t have. It seems quite a quiet clinic with friendly nurses, and it was the end of the day. I’d do it again.

They have tried everything with my son he has also been started on omeprazole and getting a ph study done which is a tube with a camera on end which goes up ur nostril down into ur throat and into ur stomach as my son constantly clears his throat also and has trouble maintaining his weight

You may also like...