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07-01-2010, 02:32 PM   #1
Cat-a-Tonic
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Adrenal insufficiency / Addison's Disease?

So to catch everybody up on what's going on with me, I still have no diagnosis. I had a CT scan earlier this week, but all it showed was that I have a lesion (most likely a hemangioma, which is benign) on my liver. My guts looked fine from what could be seen on the CT. I'm getting really frustrated because my colonoscopy & biopsies were normal too, but obviously I don't feel normal!

So I saw my GI today and he seemed very concerned that another doctor had prescribed me prednisone (I was on 10 mg a day for 5 days just to see if it worked, and it did). He said he would never prescribe a steroid without a diagnosis. But when I explained to him that the pred worked for me and made me feel like a million bucks, that started the wheels turning in his head. He just called me and said that he had a thought, that I might have adrenal insufficiency. I looked it up and found this link:

http://en.wikipedia.org/wiki/Adrenal_insufficiency

The second paragraph about Addison's disease is particularly interesting to me, because I have most of those symptoms, and I have sodium loss too like they talk about in the first paragraph. And adrenal insufficiency responds to prednisone in low doses - at the bottom, it indicates 7.5 mg is the usual dose given, and I was on 10 mg of pred.

So now I'm wondering if this is what's been going on with my guts all this time! I'm having a blood test tomorrow ("random serum cortisol" test) to see what my adrenal glands are doing. In the meantime, I'm wondering if anybody else has adrenal insufficiency or Addison's disease? If so, did you get it diagnosed with via a blood test? Do you get "flare ups" of it like with IBD? Any other info you can give me?
07-05-2010, 07:12 AM   #2
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Gosh! Sorry I can't be of any help about this Cat though I did but a book on Amazon about Adrenal fatigue just before I became ill in January. I was sick of being tired all the time (little did I know what was round the corner...) and bought a couple of self-help books to see if they'd have the answer. I believe Addison's disease can be quite serious if untreated but it looks like they can use the blood test to find answers quickly.
I do hope you get answers soon. Let us know how you get on Cat
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07-05-2010, 11:56 AM   #3
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Thanks for your reply, Sam. I had a cortisol blood test on Friday and the results came back within the normal range. I'll have to call my GI's office tomorrow to see if there's another test they'd like to do or if Addison's has been ruled out from that one test. My GI seemed to think that Addison's was a real possibility so I suspect he'll want to do another test just to make sure.
07-05-2010, 12:21 PM   #4
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That's really interesting!
could account for many undiagnosed patients
is your skin darkening with creases in your hands Cat? and do you crave salt?
xxxx
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07-05-2010, 01:45 PM   #5
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I do crave salt and it seems to help with my blood pressure when it's low (I have naturally low blood pressure anyway and when it goes lower than normal, eating some potato chips or even a spoonful or two of soy sauce really helps bring it back up). I haven't noticed any darkening of my skin on my hands, although I do have a weird darkening on my bottom (between the cheeks in the crack) - not sure if it's a rash or if it could be Addison's related, can't really tell.
07-05-2010, 01:53 PM   #6
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Just a thought cat, since pred can be used to treat addison's, could pred have given a false result on your blood test?
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07-05-2010, 04:16 PM   #7
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Rebecca, my GI didn't seem to think so - I had been on pred but had ended it last week Saturday, and my blood test was Friday, so I had about 6 days for it to leave my system. I had only been on 10 mg a day for 5 days just to see if if affected me. I'm on it again since it did work; I started on it again this Saturday. I had talked to my GI on Thursday and he said don't start taking pred again until after my blood test for Addison's, so that makes me think that the short run of pred I had taken a week earlier was out of my system and wouldn't affect anything. I'll check with my GI tomorrow to be sure, though. There are a few different blood tests that can indicate Addison's so it's possible he'll want to do another one later on after I'm done with this run of pred.
07-08-2010, 09:55 AM   #8
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Update - so my GI's office called me today, and they do want me to do another test just to be sure this isn't Addison's (as I said earlier, my cortisol test came back normal, but my GI wants to be really sure). Of course, now I'm on pred again, so I'm guessing I'll have to wait until I've tapered down off of pred before I can do this next test. So for now I'm still in limbo - unless he pulls me off of pred sooner? I started taking 20 mg of pred on Saturday, so it's been about 5 or 6 days now. Could my GI stop me cold turkey on pred since it's been less than a week? I know there's a cut-off point of something like a week where you can stop pred without tapering and not do much/any damage to yourself. I had just talked with the receptionist, am waiting on a call back from my GI, so I'm not sure what he'll do. I'll keep everyone updated!
07-08-2010, 10:46 AM   #9
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Yes, please let us know how you get on.
At least your GI's office is being proactive and getting in touch with you!
Take care
07-08-2010, 04:25 PM   #10
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Thanks Sam. Just got off the phone with my GI, and he wants me to stop taking pred so I can have another Addison's test (some sort of endocrine test, I didn't get the details - I'm waiting for a call back from the testing place now - since GIs don't usually order this type of test, my GI's office wasn't able to answer my questions about this test). The bad news is, my GI told me to stop taking pred now (I have been on it for less than a week and at a low dosage, so he said it's okay to stop pred cold turkey without tapering if it's been less than a week). And I'm not sure how long I have to be off of the pred until I have this next test - my GI couldn't answer that one either - so I might be miserable again for awhile until I get this next test. My GI says he'll re-assess things after I get the results back from this endocrine test and then he'll decide whether to put me back on pred. Sigh! I just know my flare is going to come back in the meantime, this is going to suck. The pred was making me feel better so of course they yank it away from me just after I start it. Sorry for venting, I'm just upset that they keep changing their minds and still can't figure out what's wrong with me. Thanks for listening.
07-08-2010, 07:27 PM   #11
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Wow, Cat. I hope those tests find something so you don't have to be miserable for long. What is long term treatment for Addisons like? Would you take Pred indefinitely?
07-09-2010, 07:31 AM   #12
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Thanks May. I am not entirely sure what long-term Addison's treatment is like. I doubt I would take pred indefinitely, I think there are other meds that I could take besides pred. My GI wasn't able to answer a lot of my questions because he rarely deals with Addison's and apparently I would need to find an Endocrinologist if this does end up being Addison's and not IBD. Someone else on this forum sent me a PM with a really good link to an Addison's website, so I've been slowly reading through that and it's been helpful although I still have tons of questions. So for now I just have to wait and see what this test shows, and go from there with treatment & questions and all that. I'm going to call back my doc's office today to get the test scheduled, so I'll let everybody know when it's going to be and if I find anything else out.
07-09-2010, 12:39 PM   #13
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Can I borrow your thread a moment please Cat?

Someone mentioned skin darkening as being a sign of adrenal insufficiency. Earlier I noticed some of my scars have gone quite dark, and I think the skin on my knuckles is darkening too. Should I worry about it, or is it just because it is very sunny here at the moment (although some of the scars are usually hidden under clothes). Or could it be because I have stopped taking Pred (though I did taper from 30mg over about 2 1/2 months which is slower than they originally told me).

Thanks, Rebecca.
07-09-2010, 01:05 PM   #14
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Of course, Rebecca. I remember reading somewhere that darkening of scars and the darkening of skin that doesn't usually see the light of day can both be warning signs of Addison's, so I would definitely get it checked out. Do you have any light-headedness or low blood pressure, and if so, does eating sodium seem to help alleviate those symptoms? Because that's what I've got going on lately. I have noticed a few areas of my skin that are darker than they should be, although not many and my scars don't seem to be darker, but I have had tons of light-headedness, dizziness, and low blood pressure. I found that eating a spoonful or two of soy sauce makes me feel a lot better. And if you just came off of pred, that might explain things too - if you do happen to have Addison's, it responds to pred, so it's possible you're noticing the darkening now because your'e off of pred now. I'm still learning about all this Addison's stuff and still not sure if I have it, so I'm sorry I'm not much help yet.

Someone else sent me this link and it's been informative. Hopefully this helps you somewhat too. You really should get yourself checked out just to be sure, there's a couple of simple blood tests that they do to see what your cortisol levels are and stuff like that.

http://www.addisons-help.com/
07-09-2010, 01:58 PM   #15
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Thanks for the link!

I do have some other symptoms- fatigue and muscle weakness, low blood pressure (although my blood pressure has always been low, I have been feeling dizzy upon standing which I haven't experienced for a few years. By the way, my lowest pressure ever recorded was 85 over 58, and I felt absolutely fine, so I dread to think how low it must be if I am feeling dizzy!). I had been putting these symptoms down to the Crohn's. I don't have any cravings for salt, but I will try eating something salty when I'm feeling fatigued and see what happens. And I guess I will be phoning the doctor's again on Monday to get myself checked out.

Will probably turn out to be nothing but better safe than sorry eh?
07-09-2010, 02:45 PM   #16
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Definitely better safe than sorry. I had put down all my symptoms to probable Crohn's too since that's what my GI had thought all along, but they've never found any inflammation or other indicators of IBD in my tests - I have been so confused as to how I could have chronic d, abdominal pain, nausea, fatigue, etc AND respond to pred, but still show no hard evidence of IBD - Addison's would explain all of that. So I'm really hoping that this test sheds some light on this and gets me a diagnosis, because nothing else seems to make sense at this point!

And my salt cravings are pretty subtle, it's not usually like I "have" to have something salty. I just tend to reach for a bag of potato chips as a snack because it's easy and I thought my body was craving high-calorie foods - I crave chocolate also so who knows!
07-09-2010, 02:54 PM   #17
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Well I know I have Crohn's because they found ulcers in my ileum. I am just a little concerned about the scars because although I am fairly dark skinned, my scars are usually pink or white. All my latest scars (from the past couple of months) have been darker than my normal skin colour. But what are the odds of coming down with two chronic diseases at roughly the same time? Unless of course they are related in some way, or a side effect of medications.
07-09-2010, 03:13 PM   #18
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I honestly have no idea what the odds are (Addison's is fairly rare), but I know it's possible to have both at the same time. Both have an autoimmune component so it could be that one somehow caused the other or at least made it more likely for the other to happen. Like how a lot of people with IBD will also get fibromyalgia or arthritis or other things like that - it seems like if you have one autoimmune disease, you're at a higher risk to get others.
07-09-2010, 03:39 PM   #19
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I see! By the way, I tried salt and it seems to have made a big difference so thanks for that!
07-09-2010, 03:54 PM   #20
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I saw you had mentioned that in the other thread (the one about light-headedness). I'm so glad it worked for you! It took me a little while to figure out the sodium thing myself, so I'm happy to pass it on to others. I know how miserable it can be to feel like that and I'm glad I found a relatively easy fix!
07-09-2010, 05:28 PM   #21
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Hi people,

I'm really tired right now, but I just saw this post and found it very interesting - have to reply quickly!

This is what I've read about adrenal fatigue/Addisons etc:

You can get adrenal fatigue after being on cortisone - which I'm sure you are all aware of.

The adrenal fatigue doesn't have to be determined as Addison's (this is a very serious adrenal fatigue) for you to notice the symptoms. Many doctors however seem to only be interested in/able to determine Addison's and Cushing's which are at opposite ends of the scale. Apparently without acknowledging that people may suffer from adrenal fatigue and have lots of symptoms and problems even without falling within the category of Addison's. (Just a little note, I learnt this today: Apparently there is a link between adrenal fatigue and low metabolism too, so if you are told you have a low metabolism and the meds don't work - chances are that there is something wrong with your adrenal glands...)

In order for the adrenal glands to produce cortisone, they need to be stimulated by the ACTH hormone which is released from the hypothalamus (I hope I remember correctly), so the doctor should do tests firstly to find your natural cortisone level (this has to be done at a certain time of day, as cortisone levels decrease during the course of the day). Then if these are found to be low, you have to figure out if they are low because of lack of ACTH hormone (ie there would be a problem in the hypothalamus releasing too little to produce enough cortisone), or if the adrenal glands are unable to produce cortisone even with sufficient levels of acth in the blood.

Did that make sense? I'll try to clarify this post in the morning, I feel like I'm rambling here, and all of a sudden my English vocab is totally missing, and I can't think of the right words to use!

I really hope they figure out what it is that is wrong, and I'm very interested to hear how it goes with you. All fingers crossed! I actually have a sneaking suspicion that I'm not producing enough cortisone myself, maybe due to adrenal fatigue from a heavy prednisone treatment... So I would love to hear how you are doing, and I'm going to read this post thoroughly in the morning - I am afraid I've missed some good advice from all you others, cause I didn't have time to read all the comments properly!

Good night all!

xxx

Lots of love,
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07-09-2010, 05:30 PM   #22
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Could my GI stop me cold turkey on pred since it's been less than a week? I know there's a cut-off point of something like a week where you can stop pred without tapering and not do much/any damage to yourself. I had just talked with the receptionist, am waiting on a call back from my GI, so I'm not sure what he'll do. I'll keep everyone updated!
Yeah, I think if you are on it for a week or less, you don't have to taper? Do you find that 20 mg gives you any side effects, by the way?
07-09-2010, 08:59 PM   #23
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Hi Sophia, your post made sense to me and your English is really good.

I definitely don't have low metabolism, I think I have too high metabolism as I can't put on any weight and I keep losing weight. Before I got sick, I was at 136 pounds, and now I'm at about 119. When I'm feeling okay, I try to eat as many calories as I can, but I still don't put on weight - I just maintain whatever weight I'm at. And when I'm feeling bad, I have no appetite and I end up losing a few more pounds each time I flare.

And yes, I was told that as long as I was on the pred for a week or less, that it's okay to stop it without tapering. I didn't really have any side effects at 20 mg except for some insomnia, but I sometimes have insomnia anyway. I was prescribed Trazodone to help me sleep and that's been working pretty well (it's actually an anti-depressant but it also works as a relatively mild sleep aid, and it doesn't have a high risk of dependence or tolerance).

I'll let you know when I have the test and what I find out! My doctors are closed on the weekends so I have to wait until Monday to get the test scheduled.
07-10-2010, 03:12 PM   #24
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You have a lot of different things to think about and learn at the moment Cat. It must be hard going from one suspected diagnosis to another. I hope that you are doing ok. I am sure you will get some answers soon and then will get the treatment that you need.
Let us know what is happening

Sam
07-11-2010, 04:14 AM   #25
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Hi Sophia, your post made sense to me and your English is really good.

I definitely don't have low metabolism, I think I have too high metabolism as I can't put on any weight and I keep losing weight. Before I got sick, I was at 136 pounds, and now I'm at about 119. When I'm feeling okay, I try to eat as many calories as I can, but I still don't put on weight - I just maintain whatever weight I'm at. And when I'm feeling bad, I have no appetite and I end up losing a few more pounds each time I flare.

And yes, I was told that as long as I was on the pred for a week or less, that it's okay to stop it without tapering. I didn't really have any side effects at 20 mg except for some insomnia, but I sometimes have insomnia anyway. I was prescribed Trazodone to help me sleep and that's been working pretty well (it's actually an anti-depressant but it also works as a relatively mild sleep aid, and it doesn't have a high risk of dependence or tolerance).

I'll let you know when I have the test and what I find out! My doctors are closed on the weekends so I have to wait until Monday to get the test scheduled.
You are right, that does not sound like low metabolism at all... I'm sorry you are struggling to put on weight. I've heard it's very common to be in the situation you are in, I presume your inflammation is located in your small intestine? What do the doctor's say about putting on weight?

I had the insomnia too, I remember. I was so exhausted, but I felt so alert when I went to bed... Very strange feeling.

Best of luck on the tests, dear. I really hope they figure things out for you! *fingerscrossed*

xoxo
07-12-2010, 07:06 AM   #26
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Sam, thanks! I will keep you updated. I'm supposed to get a call back today regarding scheduling this next test. I am hoping they can get me in really soon!

Sophia, they haven't found any inflammation yet - that's why my doctors are now looking for Addison's disease. They thought all along that this was crohn's, because of my symptoms and because I responded to pred, but after a colonoscopy and CT scan and blood tests and various other tests, they've still found no actual evidence of IBD. If this is Addison's, it would explain my symptoms, it would explain why I responded to pred, and it would explain why they've found no inflammation or any other evidence of IBD. So I'm hopeful that I will get a diagnosis soon, but so far I'm still undiagnosed. And because of that, my doctors haven't been able to give me a lot of advice as far as diet or how to put on weight or anything else like that. I'm just winging it for now until I get more answers.
07-12-2010, 07:39 AM   #27
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Ohh, I'm sorry I missed that part, Cat!

I really hope your doctors figure this one out! It is so frustrating living without a diagnosis, not knowing what is wrong!

Good luck, dear!

xoxo
07-12-2010, 12:11 PM   #28
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Thanks Sophia. It really is very frustrating to be so long without a diagnosis - it's been almost a year! This forum has provided me with more answers and information than my doctors have, so I'm really thankful for this place - don't know what I'd do without you guys!
07-12-2010, 03:58 PM   #29
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Thanks Sophia. It really is very frustrating to be so long without a diagnosis - it's been almost a year! This forum has provided me with more answers and information than my doctors have, so I'm really thankful for this place - don't know what I'd do without you guys!
Same here! I learn so much from you!
<3
07-12-2010, 04:46 PM   #30
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So, I finally heard back from my GP's nurse, who was able to get everything sorted out, and she scheduled me for the ACTH test (to see if I have Addison's or not). I'm having it done on the 22nd, so wish me luck! Maybe I'll finally have some answers - I really hope so!
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