Synacthen test shows cortisol/adrenal deficiency

]Hi, our son is 12 and has always had quite bad asthma - we've just been to see a new consultant today as his medication was upped to Seretide 250 2 puffs twice a day along with his montelukast 5mg about 6 months ago. He had also had a synacthen test which showed his adrenal gland now isn't functioning as it should and so now we have to give oral hydrocortisone or an injection if he's poorly. Just wondering if anyone else has experience of this as just don't seem to have been told that much (she didn't have his notes today so we have to go back and see her again soon!), Thanks

[yaf_user681_15459]

Hi,

My daughter Maddie has Adrenal insufficiency too. Her cortisol level was just 7 on her last synachen.

Firstly, I'm really surprised that your consultant hadn't given you more information although I think a lot of my understanding of my daughters condition came from reading up about it. Have you been shown how to give the emergency hydro injection?? And what dose and when does your son take the hydro tabs??

There's a wonderful website and online support group for people with Addisons/Adrenal insufficiency - Google ADSHG.

Does your son exhibit many symptoms from having low cortisol?? When Maddie was diagnosed she was very weak, had lost an incredible amount of weight, drank loads, was cold all the time and very tired. We thought she was becoming diabetic due to her steroids!!

I'm still finding the whole Adrenal issues hard to manage and that's 3.5years after diagnosis. I'm finding that her symptoms change a lot but that's due to her growing, catching different viruses going around etc, as well as the pressures on her system from her Asthma. We find we have to tweak her hydro accordingly more than we imagined to begin with. It does always seem to make a difference though and she picks up.

Your head must be in a spin right now..take things a day at a time and maybe contact the consultant again and explain you've had time to digest things and have questions to ask.

Hope this helps,

Take care x

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Thanks - yes - definitely got my head spinning. Have read up lots of helpful info though. We did get shown how to give the emergency injection and she couldn't apologise enough that she didn't have his notes so was a little vague. She has written out a plan of all the things she will arrange so hopefully this all happens quickly.

I've just telephoned school though to let them know and they really don't get it! Got a meeting next wednesday with the first aid leader to go over things and do a risk assessment........don't know now whether i should hav phoned them or not! It's just so hard as I know very little and they're asking me lots too.

We mentioned to her yesterday that callums aways tired, always poorly in some way and just doesn't have much get up and go! He hasn't lost weigh as such but could certainly do with gaining some!

We're going to wriet down all the things we need to understand more about so we are ready when we see her again.

Thanks for your reply - it was really helpful

[yaf_user681_15459]

Just a little thought....

I downloaded the Great Ormond St Cortisol Deficiency info, we've kept a copy and then given the school a copy. It's a really useful guide on the do's and don't's and has an easy to follow guide as to when to double up on hydro etc.

gosh.nhs.uk/medical-informa...

It's really difficult with regards to school. We've found Maddies school to be fantastically supportive but at the same time they are understandably worried. It can have a lot of implications, especially with sickness bugs. I went along to a staff inset and spoke to the staff about adrenal insufficiency. Be sure they are clear about the importance of understanding the condition.

Hope that helps, any other questions just shout. But like I said earlier, I'm still struggling with it, every day throws something else up!!

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Thank you - I had just come accross that GOSH info before I read this and it's really useful. Have made up some little boxes with it in and the other bits we've been given as kits for the injections.

The school have phoned back and they've arranged a meeting on Wednesday with the school medical lead and senco; they have put him on the medical register already and will contact us straight away in the meantime. They've asked for more info on it as they want to do a risk assessment so I'm going to take in some of the letters from the addisons forum you mentioned too

Thanks again for the links they really have been helpful and make me feel a little more relaxed as I know more about it all - such a minefield isn't it

X

[yaf_user681_15459]

Yes making packs is a great thing to do.

The school have a pack in the classroom with Maddies name on and another in the school office.

We also have a little plastic box in our house with hydro and needles and another one in the car. In addition, Maddie has a cute little rucksack that she wears when out and about..in it is her inhaler and spacer, epipen (she has nut allergy) and then another little tub with needles, syringes and hydro). I've put a copy of the gosh guidelines in each tub, this way if we ever need to quickly refer to it, it's there.

It's great your sons school is being proactive, that's exactly how it should be. How often does he take hydro a day and does he need to take it at school?? Maddies school has to give it at lunchtime which has worked out fine.

I hope things become clearer for you..you sound like you're doing great!! I don't think I was as organised so early in Maddies diagnosis. It still scares me all the time but it's amazing home resilient these children are. Maddies just got over a virus with high temp, we tripled the hydro and it did the trick!!

Sending empathetic hugs as you start a new journey. Like I said, pop over to ADSHG if you need more specialist advice.....it's been a lifeline for me.

Take care

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Callum's at secondary school so my biggest worry is that it's going to happen around someone who has no idea as how on earth will everyone know and understand! The thought of that bit is what worries me at the minute - once i speak to them i'm sure i'll feel better about it! The ADSHG looks good - there's just so much to read!

As for the hydro - the wierd thing is that he had the test in early December and we just received a letter saying 'The test showed that Callum's adrenal gland isn't working as it should and we've asked your GP to prescribe some medicines to use to help him when he's poorly (including an injection for times he may be unable to take tablets). i have asked your GP/practice nurse to show you how to do this.' We were due to see her beginning of Jan so she said she'd explain more then and to be honest I didn't really think about it to much as it was quite vague. I tried to get this prescription twice from the GP but kept sat=ying there's a problem with the dose and will be in touch. Callum then got really bad flu over xmas which thankfully didn't throw is asthma off but he really got quite poorly and was white as a ghost. I telephoned the GP again and said I really think this is when he needs the hydro (I had looked into it a little by then). He eventually prescribed it but said he wasn't very up to speed with it so was following the consultants advice. It made a massive difference and he was up and about within 24hours.

Back to now and our normal consultant arranged for us to see a paed resp specialist instead of her and when we got to the appt she didn't have his notes She was thorough but we had to explain to her about the synacthen test and she went away to find results - she just came back and said it's a bit more involved than first thought and she needs to look into it more and will get in touch asap with more info about doses and training for the school etc. She also took more blood and more lung funcition tests. She even mentioned about an alternative asthma treatment in the form of an injection but she needs to see if he meets the criteria!? She has also put him on the open admissions list for direct access to the childrens unit if we need it.

So all in all i'm a bit confused and waiting to find out if he has to take this daily as it seems to me that's what should be happening?

The Dr's and Consultants aren't 100% in the know about these things are they - is it quite unusual then???

[yaf_user681_15459]

Wow what a runaround you've had

When Maddie was first diagnosed it was by chance. We all thought she was diabetic so she went to the hospital aged 2.5yrs for blood tests. I happened to mention cortisol and asked the nurse to test for that too. She said she hadn't been asked to but couldn't see any harm!! We were told to go home and they would call us in approx 4 days with the results.

10pm that eve the phone rang and it was the consultant asking us to come straight in as Maddie was v poorly!! When we arrived they explained about Adrenal insufficiency etc. her cortisol was 16. She was on maintenance pred at the time so they didn't start hydro to begin with asthe pred would do the same job. However as time has gone by she's needed it too. She's since had two synachens and they've shown a lower cortisol each time. The last time was 7. Morning cortisol should be several hundred I believe.

Maybe it would be worth calling the consultant tomorrow and chasing it up. If Callum's cortisol was only mildly suppressed it may mean he only needs hydro when poorly etc, however if its hugely suppressed thn I'd assume he needs it daily. Your gp should be able to help you find that out too. Explain that you are concerned. Also explain you have a meeting Wednesday and need to give solid advice.

Hope it goes well, let me know how it goes.

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Hi Emily

Haven't replied sooner as time has flown and still don't feel i know much! Probably more confused now than ever!

Haven't been able to find out what his level was but have asked if they will re-do the test at some point to check if he needs it daily as a community nurse has been in touch with us about school training etc and she seemed to think he should be on it daily. He's already had 2 courses of the hydro for 48 hours and he has a filling next week so think he needs to take it again?!

We have been referred for allergy testing and more lung function tests and then she will review us in April. He has had one result back that shows he is vitamin D Deficient so he's now on calcichew longterm too.

One of his letters mentions an ige level being high at 1243 but doesn't really explain much more than that. It does say he isn't a candidate for xolair?

Other than that the communtiy nurse has been helpful and the school have already had 3 members of staff have training - so now it's just a case of waiting to see them again and hopefully find out a bit more.

Hope you are keeping well - thanks again for all your early info, it really did help lots!

Fiona

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[kell73]

Hi

My Daughter is 9 and was diagnosed with secondary Adrenal Suppression June 2018, this was put down to long term steroid use due to having dufficult to control asthma.

She had the Synacthen Test again in Dec 2018 and the result showed she still had it, her level was 6.

She is on 2.5 mg hydrocortisone tablets 3 times a day. We have not been given a great deal of information about it and I have had to do lots of research online...

I had read the gosh leaflet too and have asked my Daughter's consultant if she should have the emergency injection kit, alerts with the ambulance service, medical angle etc and he has been very laid back about it all and said there is no need. I have spoken with my daughter's go and they do not seem to know much about the condition and feel I should place my trust in the consultant.

I am so glad I have managed to find some other parents to speak with.

My Daughter gets extremely tired, emotional and also doesn't have much get up and go. I think the hydrocortisone has really impacted on her mood.

How often do your children have a check up with the consultant at the hospital? Do they check anything else other then height/weight?

I live on the south coast, and although I feel my daughter is completely supported by her respiratory team I do not feel I can say the same about the Endocrinologist ..

Thanks for listening and would be good to keep in touch.