I had the above test last Thursday as already discussed on here.Have not heard anything,but on my records online posted by hospital as follows
Diagnosis
No ranking
5thDecember
Adrenal Insufficiency:Confirmed
Coded entry
Adrenal insufficiency NEC (X40Mc) New episode.
Can anyone who knows help me interpret what this is saying,from your experience? Any light shed would be very gratefully received,as feel so in the dark.They send you for urgent test next day,and then no one contacts you for a week with outcome.xx
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Doodlereggie
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I was diagnosed with adrenal insufficiency earlier this year and was switched over to hydrocortisone which is normally taken 3 times a day 10mg am, 5mg a bit later, 5 mg v early evening. I kept forgetting timings so now do 10mg am and 10mg at 5.30pm. I was also given sick day rules which you can find online and 2 x emergency 100mg hydrocortisone injections. If unwell or taking antibiotics you tend to double the dose. It just adds another layer of complexity when we need to take high doses of prednisolone and taper down slowly before switching back to hydrocortisone but your endocrinologist will advise you. 20mg hydrocortisone is like 5mg prednisolone. I am on it for life, as I have severe asthma also and so chances of me going 1.5 years without needing any steroids would be impossible to achieve. To be honest it does not change things dramatically, you just need to be conscious of it and wear a medical alert bracelet. Good luck.
Thank for your reply.just got back from seeing rheumatologist and he had my results online from short synacthen test.they were good at 380 first blood test,520 at 30 mins and600 ar 60 mins.so no adrenal insufficiency,he thinks,although not his field.He said I can go back on 5 mg enteric coated for the rest of my life,instead of the 1 mg I am on now,as I felt better on that dosage.very happy with that!xxx
I’m afraid it tells very little information, other than adrenal insufficiency is confirmed. You should have 3 separate readings, for baseline, 30 mins then 60mins. You could always phone the secretary to ask for the numbers.
Your already on prednisolone around 5mg aren’t you. Which will cover you for adrenal insufficiency. Replacement dose is 3-5mgs, although they may suggest to switching to hydrocortisone with an equivalent dose of 20mg. It is almost identical to our bodies own cortisol. I did switch for 8 months, but switched back when it was confirmed it was for life.
Thanks for prompt reply.i thought it meant it was confirmed.i am on 1 mg preds and have been for last 6to 8weeks.have upped it to 3 mg for last 2 days just in case.i am just by luck due to see my rheumatologist for my annual appointment tomorrow,and,although he did not know about this with the endocrinologist last week they are in same hospital and are colleagues so he may be able to find out how to proceed.i can only see phone number for endocrinologist secretary on her private work website.is it o.k. to use it for nhs work.thanks x
Unfortunately they don’t always use the same secretary for private as nhs, and she won’t have access to nhs results. You could phone switchboard and ask to be put through to the endocrinologists secretary. You ideally need advice asap, re if you need to increase. Are you getting low symptoms on the 3mg dose. I’ll attach a graph which shows low cortisol and crisis symptoms, don’t be alarmed, crisis symptoms can usually be avoided by taking extra steroids when your low. Prednisolone is to slow though for when your nauseous, lightheaded etc, so most on prednisolone also stock Hydrocortisone, which improves symptoms in 20 mins as opposed to an hour. Any queries I’m happy to answer, as it’s quite daunting when first diagnosed.
I was diagnosed with Adrenal Insufficiency about 8 years ago. I didn’t have the synacthen test because the endocrinologist decided that because I had been on steroids for about 14 years and can’t get my steroids down to less than 7.5mg I must have adrenal insufficiency. Not sure if this is right.
Thanks so much for reply.did you have any symptoms of adrenal insufficiency and does your dose of 7.5 keep you well.i have been on preds for 23 years with 5 mg being my holding dose for last 10 years or so.only had
I’m fine with 7.5mg but when I went down to 5mg I felt really unwell. I also have rheumatoid arthritis and two lung diseases, bronchiecstasis and interstitial lung disease. The pred helps to keep my hands mobile, and it also helps my breathing.
Before I was diagnosed, I had severe fatigue, but this is also an RA symptom, I lost about a stone in weight, and muscle and joint pain, which also a symptom of RA.
Thanks for reply.just got back from seeing rheumatologist ,put me back on 5 mg for rest of life,as felt much better on that dosage.very happy with that decisionxx
I had the test twice in the last 5 months , they now conclude I have very poor adrenal function , on pred 10 years next may, currently on 4.5mg and pretty stable , been referred to endocrinology got an appointment on 23rd dec , likely hood is be on pred for life but keep my fingers crossed I can get lower , I also take 12.5mg MTX for SAPHO and RA . Good luck 🤞 we can beat this and get those adrenals to wake up .
Got results today from rheumatologist ,although he had to look up results to interpret.results on short synacthen test were 380,520ish after 30 mins and 600 after one hour,so all good,it seems.put me back on 5 mg now as my holding dose as felt better on that.very happy and relieved !x
Thankyou so much.thinking of you on 23rd.let us know how you get on.good luck.isnt this forum wonderful.p.s. You don’t have to answer that.have a good night x
I had my appointment with the endocrinologist, not a lot to report really he agreed with the Rheumatologist that I would be on prednisolone for life for life, I had a few blood tests with my GP to sort out once they are and if the GP agrees I plan to try a low dose of the herb Silajit , I explained my plan to the endocrinologist. He did say a couple of his are taking that herb and then it may be six months time. I’ll reduction again and see if the herb can get my working a little more effectively, I will monitor the herb and see if anything changes but I have nothing to lose. I will put it on the forum if I do see any big improvements in my health in general 👍🤞🙏
I would phoning anybody and everyone in your situation! It is unacceptable and negligent to diagnose adrenal insufficiency and not to follow up with advice as to the level of steroid hormone you should be taking as a minimum. My reading suggests you should be on at least 3mg prednisone. And higher doses for any stress such as an infection. Best of luck with getting some professional advice ASAP.
Hi,I cant remember the details but I know that I failed two sst tests over a year period but my numbers were getting better until finally my adrenals kicked in again so don't despair they still might work again, it's good that you're seeing your consultant hopefully they'll explain everything for you, all the best Jeremy
Thanks for reply.good results today.380 then 520after 30 mins,600 after one hour so all good it seems no adrenal insufficiency ,but he has put me back on my 5 mg holding dose of prednisolone as I felt better on that,with no problems over last 20 years or so .xx
I have the same and basically you'll need steroids now for ever. Probably 5 mg. If you are ever sick and can't take your steroids you have to get an injection....at least I was told this via letter and then one day I asked the GP and he knew nothing about it. Even though the letter said they could give the injection.
Other than that it really hasn't affected me. I'm currently on 20mg pred, still stuff and sore so chances of ever reducing near 5 are minimal..
You were so right.although results of sst test were ok put me back on my old dose of 5mg.happy with that,although hospital pharmacy did not have any enteric coated will have to get from g.p.tomorrow,no probs x
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