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Low ACTh and high Cortisol, 4 years of corticosteriod creanm used

By Anonymous April 21, 2010 - 12:18am
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Hi I have been using Corticosteriod- Cloblesatol propionate cream for abt 4 years 6 to 8 times a week or sometimes higher doses of abt 15 times a week and sometimes even low doasages of 4 times. In November 2009, I learnt abt Cushing Syndrome and I stopped the cream. In Feb 2010 I leant that I needed to stop it gradually so I started applying it high dosages intially and then gradually tapered off by 31 march reducing it to 1 dose in 5 days. I have stooped it completly. My weight has gradually decreased. The Double chin and facial mass has reduced. I feel a bit weaker and lighter and aslo experience small pain in my legs and hand. whyen tested for cortisol and ACTh the cortisol levels where high 120 (40- 80 being normal) and ACTH levels being 1.5 (10- 100 being normal). I had applied a some steriod cream in nornal dose in the morning a day before the test. Could it be due to that cortisol levels were high and ACTH low? The Dr has advised for another test in a months time and no intake of any steriod to reactivate HPA axis.

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Hi Again Smcsrr

It is extremely common to feel weakness during steroid withdrawal. Weakness, sometimes low grade fever, even nausea. It can take a while for your body to try and kick those hormones out again. All hormone levels vary throughout the day, cortisol in particular. That's why if you just take one daily dose they have you take it in the morning to mimic the body's natural production. So morning and night testing would give different results.

As far as functioning normally, that varies so much from person to person. Some people have difficulty weaning of steroids after a short period of time, others do fine after long periods. So it is hard to say in your case when you will be back to normal. The most important thing is to be sure and follow the endocrinologist's instructions so this test is accurate.

There are worse things than having to take steroids long term, but it is great if you can avoid it. I personally have been on prednisone for about 5 or 6 years. I've tried to wean off several times, and my body is very unhappy each time. So I know what you are going through. Unfortunately, you are just going to have to wait and see what that test shows.

In the meantime, eat a very healthy diet and force yourself to be somewhat active even if you feel exhausted. Just 10 minutes walking will help your energy levels even if the thought of it seems impossible. Do what you can to get your body going again.

Good luck.

April 23, 2010 - 8:43am
EmpowHER Guest
Anonymous (reply to Cary Cook BSN RN)

Thanks Cary. Wish you good luck and happy life

April 29, 2010 - 11:46pm

Hi Anonymous-

I'm a little confused by parts of your questions. First, why were you using the Clobetasol? Was it prescribed and if so, for what condition? Were you taking it as prescribed? It sounds like you were using quite a lot.

Cushing's is an issue any time you are on steroids long term. Sometimes there is just no getting around it if you have to be on the steroids; it depends on the situation, what your diagnosis is and whether there are other ways to treat it. With my RA I have to take prednisone and have for a long time, and I have a bit of Cushing's going but at this point there isn't a lot we can do about it.

What instructions were you given before the test? Usually they will tell you how long you have to be off of the steroids prior to testing. That could have affected the results. We have a page on Cushings: https://www.empowher.com/media/reference/cushings-syndrome

If you would like to write again with a little more detail such as what you are being treated for and that sort of thing we can discuss it further. Thank you and good luck.

April 22, 2010 - 5:47am
(reply to Cary Cook BSN RN)

Thanks for ur reply. I had rashes due to heavy sweating due to which I was using Clobestol. It was prescribed. The condition no longer prevails but I do experience a bit of Weakness is it a Steriod withdrawal syndrome or Arenal deficiency? How long will it take for HPA axis to function normally? I m due for another test of cortisol in a months time as per the endocrinologist view. Lets see if there is any recovery. Does there is any effect on cortisol and ACTH levels if blood samples are taken in the night?

April 23, 2010 - 12:45am
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