Just diagnosed and have questions -- Steroid Warning Network

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Date Posted: 17:22:35 12/04/06 Mon
Author: Melissa
Subject: Just diagnosed and have questions

Hi all,

(Sorry in advance for the length of the post. I posted this on another forum as well, but have only had responses from people familar with other forms of Cushings. I just found this site and thought I'd try asking here as well.)

I'm a 31 year old female and received an official diagnoses on Wednesday of steroid induced Cushing�s. I've been on steroids (Entocort) for Crohn's for about a year now which is the root of the problem (Crohn's is an autoimmune disease causing inflammation of the intestinal tract). I started the steroid last November and noticed my first symptoms (increased facial hair/acne) in December. By February, the weight gain started. I started becoming increasingly cold sometime during the summer (I walk around in 2 long-sleeve shirts and 2 sweaters/sweatshirts still cold while others are in short-sleeve shirts.) My hair started falling out in August. Once I realized that all these seemingly unrelated symptoms might be related, I finally went to the Endocrinologist in the beginning of October.

Based on physical symptoms he immediately suspected Cushing's and ordered a few cortisol tests. At the start of that initial appointment I gave him a list of meds and specifically asked about the steroid, but at that time he said he didn't think it was the problem (as did my GI when I asked her -- Entocort acts in the intestine and has a lower risk of systemic effects than other steroids, like Prednisolone). My endo gave me back my list of meds and when he checked his notes from that visit, he only wrote down the first med among a list of about 12. My cortisol tests came back extremely low (as did my ACTH levels). In the meantime, my endo forgot that I was on steroids and based on the lab results started looking for things other than Cushing's. After ruling out a pituitary tumor, two more round of lab work and consulting with 2 other endocrinologists, my doctor was confused and had me come in with the intent of telling me he was referring me to another doctor. While there, he asked if by chance I was on a steroid and when I said yes, he then gave me the diagnosis of steroid induced Cushing�s.

I'll see my GI doc this Wed. and will discuss a strategy for getting off the steroid. However, when I've tried weaning off the steroid before, my Crohn's flares. I'm praying that there's a way to get me off steroids without a major setback in my Crohn's.

I asked my endo a bunch of questions, but I'm still confused about some and have more questions I've thought of since I since I saw him. (He can be hard to get a hold of, so I want to make sure I have all my questions together before calling him.). Here's my list of questions to date, if any one can provide any insight or knows of other things I should be asking, I'd appreciate it.

-- I'm still confused about how I can have Cushing's and secondary adrenal insufficiency. My doctor explained the difference between pharmacological and physiological cortisol, but since my physiological cortisol is next to nothing (varies between 0.3 and 0.4) and the pharmacological cortisol dose seems low (currently on 6 mg), I'm having trouble understanding why I have symptoms of excess cortisol.

-- He mentioned I need to get a medic alert bracelet indicating a need for stress dose cortisol. I've done so -- should I also be requesting a prescription for stress dose cortisol to self-administer if needed?

-- Since steroids are the cause of my problems, I didn't even think to ask if I should be taking replacement cortisol. Should I?

-- Is there anything that can be done about any of my symptoms while I'm trying to get off the steroids? From a health standpoint I'm concerned about possible high blood pressure (still don't know if it's a fluke, but a month ago my GI noticed high bp for the first time, usually I'm right around 120/80, but at my last GI visit I was 140/90). From a comfort standpoint I'd like to do something about constantly being cold (I can't seem to add enough layers). And, from both a health and self-esteem perspective I'd like to lose weight (I've gained about 50 pounds since Feb. and most days eat less than 1000 calories of no/low fat and low-carb food).

-- Once I'm off steroids, will the Cushing's go away and how long for the symptoms to disappear? My endo said it "should" go away and that since I've been on steroids for a year it could take "a while". His vagueness is making me feel a bit uneasy. If I wean off the steroids and my pituitary and adrenals don't kick in for "a while", then I have no cortisol in my system. Does this put me at higher risk for an adrenal crisis?

-- As I mentioned above, there's a chance I won't be able to come off steroids without aggravating my Crohn's. When I asked my endo what happens if I can't get off steroids, he said, I'm stuck with Cushing�s. But, given that the steroids are causing more health issues, it seems like the obvious choice is to deal with the Crohn's to get rid of the Cushing's (though that's easier said than done). If anyone else has a similar situation, how did you decide which condition to treat (Cushing�s or the underlying problem)?

Thanks in advance for your help!

Melissa

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Replies:

Re: Just diagnosed and have questions -- Ivy (Empathizing!), 04:08:56 12/05/06 Tue
Re: Just diagnosed and have questions -- Judy K, 05:55:44 12/05/06 Tue
- Re: Just diagnosed and have questions -- Melissa, 18:45:23 12/05/06 Tue