This is a long shot but im desperate. Im a 37 year old male who suffered from acute asthma as a young child. For approx 2 years (ages 4-6) i was injected with weekly doses of 'Synacthen' and then inhaled steriods there after. My growth was suppressed and am still small now. However my main concern is my mental health and just never felt right in myself. Ive been reading about secondary adrenal insufficiancy which would make sence. However my morning cortisol level came back within tolerance. Was anyone else misdiagnosed because of this? I paid out for private saliva test (4 tests at different times of the day). This came back suggesting adrenal deficiency however my GP or Endocrinologist wernt interested with my american produced private results. I find it ironic that the very drug i was given all those years ago which could of caused my long term health issues is the same drug they use to do a 'one off' acth test. Is there anyone else ever been medicated long term with synacthen? Ive not found one so far and starting to feel very unique and isolated. Id be grateful for any feedback or support, especially something i could show a medical professional. My deppression is now severe on top of feeling irritable, brain fog, unable to relax, cognitive/learning/memory issues, constant back stiffness and pain, drained/fatigued, and just dont feel present or living. Im sure theres other symptoms too. Any responce would be appriciated. Thankyou.
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kernowboy
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Addisons is common as secondary adrenal insufficiency from corticosteroid use. Unfortunately even though the Addisons society in the UK do am amazing job of educating the NHS staff, it is still poorly understood and rarely diagnosed in time. You sound symptomatic but unless you crash or test almost at zero you will be hrs pushed to get a diagnosis.
The London Clinic has some very knowledgeable endo’s who might be able to help.
I’m sorry to hear about this. I developed SAI from taking too many courses of prednisone for severe asthma. I was diagnosed after I had an adrenal crisis and my cortisol levels are very low so it was pretty easy for me to see an endo, get medicated etc.
it is not an easy disease. I feel awful a lot of the time (exhausted, nauseous, dizzy, out of it) and I have to take 25 mg of hydrocortisone throughout the day to feel even somewhat normal. All that HC has made me gain 5 kg and the whole thing is just generally really frustrating. I can’t believe doctors don’t tell us it’s a common side effect of taking steroid bursts to treat asthma. I’m not sure if my adrenals will ever start working again. Right now they’re producing <5 in the morning (when 40 would be on the low end and 220 on the high).
Keep on advocating for yourself! You know your body. Get more bloodwork. Try an 8 am cortisol one if you haven’t already + panel of electrolytes, sodium, potassium and so on.
Dr. Peter Hindmarsh at Ormond Street is a celebrated SAI specialist in the UK. Perhaps he could give you a recommendation for a better endo near you.
I also have SAI but my 9am cortisol is around 230 which isn't too bad. Luckily I have a good endo team who I was referred to by the asthma team - tbh they seem more on the ball about everything than the asthma lot!
They did a short synacthen test (well I have had one every year now for 3 years) which showed that though I do still produce some cortisol, I don't respond as I should when adrenals are stimulated and I need to take hydrocortisone and increase when unwell. I managed to have my first crisis at Christmas because I had a virus which set off asthma and I'm still trying to reduce back to my normal dose..I am.a bit odd in that despite severe asthma I don't now take pred (that was how I developed this) because I"m apparently resistant to it.
This is all just to say that you shouldn't give up because they told you a random morning cortisol test was normal. Like awilso said the NHS can be quite variable with handling this and while I have got lucky I know a lot of people struggle to be heard. There is a group called the Adrenal Disease Support Group on Facebook which you can ask to join if you are a Facebook member - they have some helpful information and members who might point you towards someone you can see (it is closed so no one outside can see posts).
I think the Pituitary Society also has a nurse helpline one or two days a week which I found helpful in the early stages.
Hope this helps you get further forward - it does feel crap, it was like my brain was gone and I was still on 5mg pred while waiting for diagnosis! But it didn't seem to last like I had been told.
I had a recent morning cortisol level of 4, long term prednisolone caused this.
Initially the Brompton referred me to an endocrinologist when I was weaning off of long term high dose prednisolone as my cortisol levels were low.
The endocrinologist performed a synacthen test as below which confirmed adrenal suppression......
Synacthen is a drug with the partial structure of ACTH that has the actions of ACTH , the natural hormone produced by the pituitary gland. Synacthen is given by injection to see if this stimulates the adrenal glands to produce cortisol. A blood sample is taken from the forearm to measure the unstimulated (before the synacthen is given) cortisol concentration and sometimes aldosterone and plasma renin activity. Synacthen is then given by injection. After 30 minutes another blood sample is taken to see if cortisol and aldosterone levels have increased. A further sample at 60 minutes may sometimes also taken (usually in children). The timing and numbers of samples varies between hospitals. In Addison’s disease cortisol and aldosterone levels do not increase following the administration of synacthen.
Have you had the above test ?
If not and your GP refuses to refer you then I would get the test done privately as adrenal suppression can be life threatening.
I have been prescribed an emergency injection kit and guidelines to follow for surgical procedures. Next week for example I am having a colonoscopy and the adrenal issue has complicated the procedure in that I am being admitted to Hosp the day before to be put on a drip and monitored due to the laxatives.
Quite often other complications go hand in hand including thyroid, low testosterone, steroid induced diabetes and high blood pressure, I have the full house now but it’s all easily managed.
I take hydrocortisone 15,mg am, 7.5 mg, 10mg
Hope you manage to get a diagnosis or the test results put your mind at ease.
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