Could someone tell me if 'cushingoid' is having temporary symptoms similar to cushing's syndrome. My 14 year old daughter had a large dose of dexamethasone/decadron (10mg a day for 7 days) for croup/breathing difficulties. We now realise she has a lot of the symptoms of cushings and want to pursue this, but if she is suffering from this would like to know if this might be a long term condition or something she can get over in time. I have read quite a bit about Cushing's and being cushingoid but can't gather if they are the same or not. Sorry if this is a stupid question, but would be very grateful for an answer to this.
First of all, I am very sorry to hear that your daughter is suffering. I had Cushing's disease (cyclical pituitary type) and it took over 12 years to get help. In this time, I met a lot of people with Cushing's from different sources.
Dexamethasone is a long acting steroid. It stays in the body for quite a long time. She was also given quite a hefty dose. Was she weaned off at all? THIS IS VERY IMPORTANT. Coming off a large dose of steroids can be quite dangerous. A competent doctor would tell you do taper the doses so that at the end, you would be taking a small dose at the end. This is because the adrenal glands shut down whenever large doses of steroids are taken. They need to be coaxed into waking up. If they do not wake up, she may have an adrenal crisis. If she starts to sweat, vomit, get confused, feel nauseous, or get a really bad headache, take her to the emergency room and tell them that she was on high doses of steroids without a taper. This will save her life.
As for cushings/cushingoid - well, the symptoms can pass in some people but for some, the symptoms last. Some people seem to be much more sensitive to steroids and react differently to them, but again, your daughter was given a HUGE dose. Let me elaborate : 10mg of dexamethasone is equavalent to 266.67mg of hydrocortisone. I have no adrenals at all, and my daily replacement dose is 22.5mg. Do you see why I say that is huge? That is why she developed Cushing's. I do not have very high regard for your doctor. He could have helped her with a less dangerous dose.
Thankyou for your reply and information.
I should've mentioned that my daughter had these steroids a year ago, but although her symptoms have improved somewhat they still remain, and she is still quite unwell. She was not weaned off them, and I realised that she had a high dose but you have highlighted just how high it really was. She had a pre-existing weakness, that was caused by iron defficiency, and possibly other things, that we are still pushing to get investigated. (ie thyroid)
My daughter had 2 cortisol blood tests done last year, a few months after the steroids. She had one at 9am and another at 4pm. Our doctor told us that the morning cortisol was normal but he omitted to tell us the pm level, so i am requesting this level as it may be relevant. We only started considering cushings when we realised a blood test result (cortisol) was missing and how her situation had similarities with cushings. Thanks again for your words of support.
She may have developed steroid myopathy. After high doses of steroids, it makes the muscles weak. That is why people with Cushing's have weak muscles as well - from steroid exposure. I really don't think doctors are very careful when they give steroids unfortunately.
I know some of my friends that developed Cushing's after steroid shots for pain. Some people just are sensitive. It is hard to tell who is predisposed, until it is too late.
For the past six months or so we have thought she has had steroid myopathy. The doctors denied this, saying that this could only happen if the steroids were taken long term. (We didn't believe this!) When we realised she had a lot of cushings symptoms, we wondered if she had this as well/instead.
Ah yes, the good ol' denial. When I ask my doc about the side effects of steroids, they will say a "temporary rise in blood sugar" and I want to rip their eyes out.
If she sadly happened to be predisposed to an issue, then the steroids once can cause Cushing's to be aggravated. In any event, the docs should not scoff but test. Persist and get testing.
I am now testing for a potential muscle disease - I had my local neuro at first try to just give me large doses of prednisone! I about ripped his head off (early 'roid rage LOL). Here I am, post-Cushing's where I doubled my body weight and just managed to drop some of my weight, my muscles are destroyed and my bones are damaged and he wanted to give me a medication to make all that worse... gee, thanks. No. I got another opinion and that neuro is saying no matter what, no steroids. So hopefully you can find another doctor to help you.
Sorry I missed this before.
Can you post the ranges with the tests - absent the ranges, it is hard to tell. But just looking, it looks normal as she dropped.
But I had a lot of normal tests (most of mine) and I had Cushing's as I was cyclical and my tests were high only at night. So 11pm or 12pm saliva tests were best for me.
Has she done any 24 hour urine tests?
4pm reading 70 nmol/L
Range for this not given on test result just states "Difficult to interpret as sample taken mid afternoon. If adrenal insufficiency suspected suggest refer for Synacthen Test."
However having looked at websites it seems that ranges are
Cortisol at 4.30pm 110 - 390 nmol/L
So we think the morning one is in normal range - on low side - but the afternoon one is definitely lower than normal range. I have read the afternoon reading should be approx half of the morning reading.
Has not done any 24 hour urine tests.
Any ideas would be appreciated.
Last edited by Joodles62; 02-18-2008 at 03:25 AM.
Reason: forgot a sentence
For your daughter having so many symptoms, they should be doing more of a work up on her - most if not all of the guidance says to keep testing if clinical suspician is high.
I know of others when they are cyclical where they go very high to very low - and they look very cushingoid but the tests "bely" them so the docs tend to be dismissive. You really need to find a specialist who has treated cases of Cushing's before and explain her history. She needs more testing even though, granted, it is not fun. She is not alone - there is a show called mystery diagnosis where a baby had cyclical cushing's and the doctors accused the mom of overfeeding the baby and all sorts of things but it ended up now two of her daughters have a rare form of adrenal cushing's that is hereditary. She had to battle for both kids but the show was about the youngest. She went to the National Institutes of Health in the US , in Maryland, to get help. Kids can get this. My mom pretty much thinks in retrospect I had this much younger than when the tumor was found but the symptoms are so general and non-specific, it is hard to pin it down and well, obesity is plainly blamed on the patient or the parents.
Thanks. We thought that these results may have ruled cushings out, but it's interesting that you think she still could. We thought that the low cortisol would be more indicative of adrenal insufficiency (addisons). She has symptoms like dizziness and low bp but we put this down to other things. But she has weight gain, stretchmarks etc. We definitely need to push for more tests either way! thanks again