Adrenal insufficiency / Addison's Disease?

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Cat-a-Tonic

Cat-a-Tonic

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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?
 
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
Sam
 
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.
 
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
 
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.
 
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.
 
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!
 
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
 
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.
 
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?
 
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.
 
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.
 
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/
 
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?
 
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!
 
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.
 
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.
 
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!
 
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,
 
Cat-a-Tonic said:
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!
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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?
 
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 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
 
Cat-a-Tonic said:
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.
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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
 
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.
 
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
 
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! :)
 
Cat-a-Tonic said:
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! :)
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Same here! I learn so much from you!
<3
 
:) 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!
 
Cat-a-Tonic said:
:) 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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Good luck, Cat!!! I'll be crossing my fingers that they find out what is wrong!

xoxo
 
I'm glad to hear you've got your test date. At least you'll know one way or the other once you've had the test done and can move on with treatment. So you will have some answers at least!
How are you feeling at the moment as you've come off your medication?
Take care
Sam
 
Thanks for checking up on me, Sam. I've been okay for the most part, although I am really fatigued today (I managed to sleep for about 9 hours last night so the insomnia effects of the pred are gone, but the energy effects of the pred are also gone and the fatigue is back big-time). My d and nausea have also come back somewhat but the doctor said I can still take my Lomotil and Zofran (anti-diarrhea and anti-nausea meds) and that they won't affect the test the way that pred might, so at least I still have those.

So, I just have to make it through the next week, my test is one week from today! My goal is to buy myself a good book this weekend, as they said the test will take about 2 hours (they inject me with something called ACTH and then test my blood every half-hour for a couple of hours to see if I'm producing enough cortisol in response to the injection - if I produce extra cortisol, it means it's likely not Addison's, but if I don't produce more cortisol, then I've likely got Addison's).

I saw on your other thread that you're doing well on pred. Keep me updated with how you are doing and I'll update you next week after I've had the test! :)
 
Good luck, Cat! Really hope they figure something out from this test! *hug*

Let us know how it went! x
 
I will - the test is on Thursday, so a couple more days, and I'm not sure how long the results will take. (I got my results back the same day when I had my first cortisol test, so hopefully these test results will be back quickly too.)
 
Cat-a-Tonic said:
Thanks for checking up on me, Sam. I've been okay for the most part, although I am really fatigued today (I managed to sleep for about 9 hours last night so the insomnia effects of the pred are gone, but the energy effects of the pred are also gone and the fatigue is back big-time). My d and nausea have also come back somewhat but the doctor said I can still take my Lomotil and Zofran (anti-diarrhea and anti-nausea meds) and that they won't affect the test the way that pred might, so at least I still have those.

So, I just have to make it through the next week, my test is one week from today! My goal is to buy myself a good book this weekend, as they said the test will take about 2 hours (they inject me with something called ACTH and then test my blood every half-hour for a couple of hours to see if I'm producing enough cortisol in response to the injection - if I produce extra cortisol, it means it's likely not Addison's, but if I don't produce more cortisol, then I've likely got Addison's).

I saw on your other thread that you're doing well on pred. Keep me updated with how you are doing and I'll update you next week after I've had the test! :)
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Hm... I didn't see this post earlier... :)

Sounds like a good idea to get a book, that test seems to be thorough! :) What kinds of books do you like? Which one did you get, if you don't mind me asking? :)

I'm sorry to hear you are very tired. :( It seems like a common thing for us, but it is so frustrating. I hope it's a temporary thing for you, Cat.

Big hug,
 
I had realized that I've never gotten around to reading the "Lonesome Dove" series of books, so I got the first book in that series. I've heard those books are good so hopefully that'll keep me entertained during my test on Thursday.

I think I'm so tired lately because I'm off the pred, plus I've had some stressful personal stuff going on lately. My brother is being discharged from the military and he's coming to live with us for a little while, so we've been trying to get the guest room set up for him. In fact my husband is peeling off the wallpaper in that room as I type this. It's been exhausting getting the room ready and we still have to paint it and do a few other things. So hopefully I'll be less fatigued once the room is finished and my brother is here.
 
Hi Cat,
Not been online for a couple of days. Sorry to hear you're still feeling so tired. Hopefully that will only be for a couple more days now and the test results will point the doctors in the right direction and you will get the medication that you need to help. I bet you can't wait?!
I'm still doing well, thanks. Am on 15mg now and noticed a little stomach pain but little else. I am trying to build my strength up slowly as although I have more energy I can't do much for long without being tired out.
I'll have my fingers crossed for you on Thursday. I hope it goes as well as it can
Take care
Sam
 
Hi Cat, good luck with your up coming test! Let us know the results and if you have to go for more testing such as Aldosterone, Electrolytes, and Renin.

Electrolytes (Sodium, Potassium, Chloride and Carbon dioxide) are measured to help detect and evaluate the severity of an existing electrolyte imbalance and to monitor the effectiveness of treatment. Electrolytes may be affected by many conditions; with Addison’s disease the sodium, chloride, and carbon dioxide levels are often low, while the potassium level may be very high.

Aldosterone. Blood or urine aldosterone levels are measured to help diagnose Addison’s disease - to determine whether the adrenal gland is producing aldosterone. If the levels are low, it is another indication that the patient may have a primary adrenal insufficiency.
 
Sam: You're right, I can't wait! I am getting impatient and just want this test to be over with so I can know the results. I've been sick for so long - it'll be a year in October - and I just want a diagnosis already! I'm sure you probably feel the same way too and understand the frustration. Glad to hear the pred is still working well for you. When is your endoscopy? I hope it goes well for you and I hope you finally have some answers soon too.

Crohn's Doll: Thanks, I'll definitely let everyone know the test results as soon as I get them. My test is at 8 AM on Thursday. I've been reading up on the ACTH test a little bit, and what I read said that it's best to have it done at about 8 AM (something about how cortisol and ACTH levels in the body change throughout the day so it's best to test them first thing in the morning). So I'm glad my test is going to be at the ideal time, makes me a little more hopeful that I might actually get a result.

I had a blood test back in December '09 during my 3rd flare, and at that time they said my sodium levels were low (everything else was normal - they tested for thyroid, IBD inflammation markers, celiac, you name it). They thought that my sodium was low because of all the diarrhea I had been having, and the doctor literally said "eat a bag of potato chips and you should be fine." I haven't had my sodium levels tested since then, but that immediately struck me when my GI recently started talking about the possibility of Addison's. I am sure my sodium levels are still low, because sometimes I'll have episodes of really low blood pressure (dizziness and light-headedness and just general awful feeling), and if I eat something salty then I immediately feel better and my blood pressure goes back up.

I haven't had my other electrolyte levels tested but I will definitely ask my docs about that. My potassium may be high because I try to eat a banana every day - it's the only raw fruit I can easily stomach. Not sure about the other two electrolytes, but I'll ask the doc if those should be tested.

Thanks for the information! I'll let you know how it goes and if they want me to have more tests.
 
Cat-a-Tonic said:
I had realized that I've never gotten around to reading the "Lonesome Dove" series of books, so I got the first book in that series. I've heard those books are good so hopefully that'll keep me entertained during my test on Thursday.

I think I'm so tired lately because I'm off the pred, plus I've had some stressful personal stuff going on lately. My brother is being discharged from the military and he's coming to live with us for a little while, so we've been trying to get the guest room set up for him. In fact my husband is peeling off the wallpaper in that room as I type this. It's been exhausting getting the room ready and we still have to paint it and do a few other things. So hopefully I'll be less fatigued once the room is finished and my brother is here.
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Never heard of that series, what is it about?

Ah, refurbishing can be so exhausting. You should indeed let your husband do a fair share, and you should just have the role as supervisor! ;) I certainly hope you feel better and more energetic soon. No greater feeling than having energy to do things! :)

I'm off to visit some friends over the weekend, so take care, and good luck on the tests tomorrow.
 
Sophia: The Lonesome Dove series is about the Old West and the Texas Rangers (fiction, not actual history). So far it's pretty good, I'm about 50 pages into the first book. I think there's 4 or 5 books in the series so that should take care of my summer reading. :)

You're right, refurbishing is very exhausting! My husband is doing a lot more than I am (he scraped off all the wallpaper yesterday and he's going to buy the paint and hopefully start painting today). I have done a bunch of sewing - I made a curtain to cover the closet, since there's no closet door, and I mostly finished up a quilt I was working on (so that my brother will have a warm quilt to use in case he ends up staying through the winter), and tonight I'm going to sew curtains for the windows. Once we finish the painting and the curtains, we should be done!

Have fun visiting your friends! :)
 
Cat-a-Tonic said:
Sophia: The Lonesome Dove series is about the Old West and the Texas Rangers (fiction, not actual history). So far it's pretty good, I'm about 50 pages into the first book. I think there's 4 or 5 books in the series so that should take care of my summer reading. :)

You're right, refurbishing is very exhausting! My husband is doing a lot more than I am (he scraped off all the wallpaper yesterday and he's going to buy the paint and hopefully start painting today). I have done a bunch of sewing - I made a curtain to cover the closet, since there's no closet door, and I mostly finished up a quilt I was working on (so that my brother will have a warm quilt to use in case he ends up staying through the winter), and tonight I'm going to sew curtains for the windows. Once we finish the painting and the curtains, we should be done!

Have fun visiting your friends! :)
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Wow, that sounds lovely! I'm sure your brother will be so grateful to see everything you've done for him! :)

I'm reading "The Help" by Kathryn Stockett. I quite like it. :) Must remember to bring it on the flight.

Talk soon! x
 
I'm back from my test - all seemed to go well. I'm a little light-headed now, which is probably due to the amount of blood they took from me (about 8 or 9 vials, I lost count) and the fact that I wasn't allowed to eat or drink anything before the test and I dehydrate really easily. So I'm having some gatorade now and should be feeling better soon. The nurse said my results should be back pretty quickly, probably either tomorrow or Monday. So, fingers crossed!
 
Wow! That's a lot of blood you had taken, I hope that you are resting now?
Let us know when you can about the results and what happens next.
Take care Cat.
 
Well. I got my test results back, but I can't say I have any answers. I spoke with my GP, and he said the results are normal. But then I did some googling, and now I'm wondering how he interpreted the results. I'm going to get a second opinion from my GI on Monday.

My GP said that my baseline cortisol was 20, and one hour after the injection, it rose to 28. He said that's normal. But after googling around and finding this link:
http://en.wikipedia.org/wiki/ACTH_stimulation_test#Interpretation_of_results
I'm really starting to wonder. It says that in normal healthy individuals, the baseline cortisol is typically between 20 and 30, and it typically doubles or triples one hour after the injection. Well, I started at the normal baseline, but I definitely didn't double or triple - only 28, when it looks like it should have been between 50 and 75.

I also had a bad reaction to either the injection or to losing 9 vials of blood. As I said in my post above from yesterday morning, I had just started feeling bad then - it ended up getting a lot worse. I got a massive chill and just couldn't get warm even though I was wearing a warm sweater and drinking hot tea. I also got really pale in the face and a little light-headed, and very weak feeling. I was at work and had to go from the 2nd floor to the 3rd, and the thought of walking up the stairs was overwhelming because I was so weak. So I ended up going home sick and rested for the rest of the day, and then I finally started to feel better and today I'm mostly back to normal. I had called my GP's office when I was feeling really bad, and they said it was definitely not a normal reaction to the test. So I don't know what to make of that either!

So, long story short, I'm still in limbo. I plan to call my GI first thing on Monday and ask him about these results and about my weird reaction. If he also claims the results are normal, then I'm going to ask if I can go back on pred, because at least that'll give me some relief until my endoscopy next month. If he says the results might not be normal, I'm going to see what other Addison's-related tests can be done to clarify these results.

On a weird related note, I just found out that a relative of mine has Addison's. He's not a particularly close relative (my mother's cousin's son), but now I know there is a case of it in the family. I don't know if it has a genetic component or not, but I plan to ask about that too.
 
Cat-a-Tonic said:
...I also had a bad reaction to either the injection or to losing 9 vials of blood. As I said in my post above from yesterday morning, I had just started feeling bad then - it ended up getting a lot worse. I got a massive chill and just couldn't get warm even though I was wearing a warm sweater and drinking hot tea. I also got really pale in the face and a little light-headed, and very weak feeling. I was at work and had to go from the 2nd floor to the 3rd, and the thought of walking up the stairs was overwhelming because I was so weak. So I ended up going home sick and rested for the rest of the day, and then I finally started to feel better and today I'm mostly back to normal. I had called my GP's office when I was feeling really bad, and they said it was definitely not a normal reaction to the test. So I don't know what to make of that either!....
Click to expand...

Well I am not a doctor...but you already have problems with dizziness and such, and after saying that salt (in general) makes you feel better, I would suspect it was the 9 vials of blood they took that caused this... but like I say...this is just a guess.....

However, I am sorry to hear that you still have no answers....it's frustrating as hell....not knowing what is going on....but maybe (to maybe put a bright spot on it :redface: ) you can start ruling out what it's NOT anyway....

I can understand why he wouldn't want to put you on the prednisone...as that IS going to help whatever is going on, but will make it harder to identify exactly what the problem is.... but maybe sometimes...relief is just a bit more important than the actual diagnosis....

Sending you warm thoughts and hoping they find something soon....
 
Thanks Silver. My GI didn't want me on pred at all, actually - he said he'd never prescribe something like that without first having a diagnosis. One day during a really awful flare, after finding out that both my GI and GP were fully booked up, I managed to get an appointment with a different GP in the same office as my GP. This GP took one look at me and said that I probably have IBS and that I "look depressed and anxious" and he tried to push anti-depressants on me. Well, of course I'm depressed, but I'd rather treat the root cause - this mystery illness - than just fill myself up with anti-depressants. I'll be far less depressed when I get a diagnosis and some proper treatment! So this GP said he wanted me to try some IBS meds, and I said I wanted to try pred. He agreed to prescribe both, and the pred worked (the IBS meds didn't work). My GI was angry when he found out that I had been prescribed pred, but he was intrigued when I told him that the pred works for me and makes me feel great and makes my symptoms pretty much go away. But then my GI took me off pred so I could have the ACTH test. So now that I've had the test, I'm hoping to either have another test right away or to go back on pred.

As for ruling things out, my GI said it's not cancer (I wasn't worried about that anyway but I guess he had to say it because a lot of people do worry about that). The biopsies rule out celiac disease (that was a concern early on because there's a lot of that in my family, but pasta and bread are two of my "safe" foods in a flare, so I didn't really think it was celiac either). My GI said it's probably not UC since I haven't had any bleeding, so that rules out a lot of the big ones. He has been looking for Crohn's but hasn't found anything whatsoever in all my tests - they all have come back normal - which is why he switched gears and is now looking for Addison's. I don't think that means Crohn's is ruled out, just on the back burner for now.
 
Catatonic - I am sorry to hear of your problems.

I was diagnosed with Secondary Addisons Disease in February (due to me taking pred for 8 years straight). I had a Synachthen test (which I think is what you had). My baseline cortisol was 102 nmol/L - I am the UK and that is the measuring system we use here, so I am not sure which measuring unit your score of 20 was measured in?

I did have a response to the injection, but it was no way enough. You are correct, your cortisol should have doubled/tripled.

Are you not under the care of an endocrinologist? It is their duty to look after patients with suspected addisons disease, not a GP. These are specialised tests, and a GP would not really have the required expertise. If you can get yourself referred asap, that would be the best way forward.

Hope this helps.

Take care
 
Hi Oregon, thanks for your reply. From the link I had posted earlier, it looks like cortisol would be measured as ug/dl. So I started with 20 ug/dl and ended up with 28 ug/dl. I have no idea what that stands for though!

I haven't been referred to an endocrinologist but I will ask about that. My GP had referred me to my GI awhile ago because my symptoms seemed to be IBD - diarrhea, nausea, abdominal pain, weight loss, etc. After looking for IBD and not finding anything, my GI had the thought that this might be Addison's, as that can apparently have those symptoms as well, and it also responds to pred. So that's where I'm at now. And I can't really do anything until Monday anyway since the doctors are all closed on the weekends.

I was only on pred for 5 days, then off of it for a while, then back on for only 6 days, then off again. So if this is Addison's, I'm sure it wasn't caused by pred! How do they determine whether Addison's is primary or secondary? Is there a specific test for that, or is it something that the doctor determines based on what meds you've been on and stuff like that?
 
Hi Cat

Yes, you would have a CRH stimulation test that would determine whether it is primary or secondary addisons. I did not have this test, as it was clearly secondary in my case. You only had to glance at my medical notes and see the horrendous amount of steroids I have taken. Also, I did not have any darker areas of skin.

You would only have this test if an endocrinolgist found your original test to indicate low cortisol production (which you have). You have only been on pred for a short time, so secondary addisons would seem unlikely. But, you have something going on, so you would need to be tested.

Best wishes
 
I'm sorry to hear that you still do not have any answers Cat. Hopefully on Monday you will find out one way or another. I hope that you are resting well and trying not to worry too much.
I totally know how you feel about not having a diagnosis. It is so frustrating and upseting. Sometimes I wonder if others think I'm just making it up as all the tests come back negative...
I saw my GP yesterday and he is so pleased that the pred is working for me but says that that still doesn't confirm any diagnosis.
I have my endoscopy on Monday afternoon so maybe we might both have some answers on Monday. Heres hoping!
 
Hi Cat,

Yeah, don't let them prescribe anti-depressants! I hope you get a second opinion on the test results. If they were to double, then your doctor isn't very in good in math! :)

Bushydougie: Good luck on your endoscopy today! I'm crossing my fingers for you!
 
Hi Cat, I hope you are going well. I totally agree with Oregon that you get a referral to see and endocrinologist. My friend lives in Wisconsin (Milwaukee) and has seen a lot of different endos. I could ask her for some names if you'd like? Also check out the "helpful doctors" on the site.
 
Thanks everyone for your replies. I got nowhere so far with trying to get a second opinion - tried calling the doc on Friday and said that I'd get a call back on Monday. So by lunchtime today, still no call from the doc, so I called his office again. I left a message with the receptionist who passed it along to the nurse, who called me to say that the doctor already left for the day (of course) but she'd have him call me... sometime. Argh! So I'm just going to call his office every hour tomorrow until I get somewhere! If I get nowhere tomorrow again with the GI, then I'm calling my GP and asking if he can refer me to an endocrinologist. I guess that's all I can do at this point!

Oregon, I don't seem to have any skin darkening either. It's a little bit hard to tell because I tan easily and it's summer and I enjoy sitting outside on my lunch break, so I have been getting kind of tan anyway.

Sophia, how was your trip? I definitely didn't let that doctor push anti-depressants on me. I do actually take a very mild anti-depressant (trazodone) but I use it as a sleep aid (it works for both). I only take it when I am not able to fall asleep easily, so usually only once or twice a week. My doctor said it's good to use as a sleep aid because it has a low risk of dependency and it doesn't cause weird side effects like some sleep aids can (like with Ambien, how it can cause you to drive, cook, etc when you are asleep).

Sam, how'd your endoscopy go? I really hope you get some answers from this! I've got my fingers crossed for you - good luck! Were you knocked out for it? I've got mine scheduled for Aug 16th so not too much longer for mine (unless I can get some answers from an endocrinologist sooner, then I may cancel the endoscopy).

Crohn's Doll, I am in Madison, so Milwaukee is about a 90 minute drive from here. I'm sure there's some good endocrinologists here, I'll have a look on that website to find out. (I work full-time Mon-Fri so it's hard enough to get to the doctors around here with my work schedule, so it would be pretty much impossible to get to Milwaukee and back during a work day.)
 
Oh Cat! I am sorry you are having a frustrating time of it. I hope that you get in touch with them today and get some answers. I am also trying to get hold of my Gi's secretary today but haven't been succesful yet (my GP thinks I should be on pred a bit longer but needs GI to prescribe it). I have written about my gastroscopy in my post about it. I just went for the throat spray in the end. It was Ok but not pleasant! What option are you planning on doing for yours?
Let us know any news. I'm thinking of you...
 
Hey Sam, I'm glad I don't have to have the throat spray. My doctor has already advised me to make sure I have someone to drive me to and from my endoscopy, because I'll be sedated (the same stuff they gave me for the colonoscopy, which worked really well - I don't remember a thing and I didn't feel any pain, at least not until the next day). Glad to hear it went okay even though you just had the throat spray. Let us know when you get the results back!

It's noon here and I haven't yet heard from my GI. I'm at work and I've been busy so I haven't yet had a chance to call his office again, but I'm going to lunch soon so I will call then. If I can't get ahold of him today, I'm calling my GP tomorrow to get a referral to an endocrinologist. Of course, it'll probably take 3 months to get an appointment with one, but I don't know what else to do.
 
Any news yet cat?
Thinking of you often.
I've been for my hair cutting and colouring just now. It's made me feel much better. Hope you're taking care of yourself
 
I finally got an answer from my GI just this morning - he also thinks the results of the latest Addison's test were normal. I asked about a referral to an endocrinologist and I was told that would have to be done through my GP. So I'll be calling my GP's office today to ask about that (I hate doing that - they always put me on hold and they have the worst hold music - it's literally one song repeating over and over and over, drives me crazy!). So that's where I'm at, still fighting with the medical system to get some form of answers - in other words, just another typical day for me.

I need to get my hair colored soon too. I'm only 30 but I've started to go gray - not sure if it's another side effect of being ill, as my parents didn't go gray until their late 40s/early 50s. Of course my parents are both healthy too, so who knows.

Have you gotten your endoscopy results back yet? Less than 3 weeks now until my endoscopy. I'm sure it won't find anything, but at least that will completely rule out celiac and I will be able to check that one off the list of possibles. I'll let you know what I find out from my GP about getting a referral. Hope you are well and that the pred continues to work for you. :)
 
I'm sorry you're no further forward Cat. How very frustrating. Do you still feel it could be Addisons then?
I don't have my results yet. Should be middle of next week. Also got an earlier appointment with my GI the week after. He wanted to see me in 3 months (I was v disappointed it was going to be so long) but when I phoned up about the pred he brought my appointment forward. I'm guessing he wants to check how the pred is working and why it's working.
I think you should try and get a hair appointment asap. It will be good for you to get a bit of pampering!
 
Hi Cat

I know the feeling. I went through months of being called a hyperchondriac before I finally got my Addisons diagnosis (including my GP - who I eventually filed a complaint against).

I did many months of research during my battle to get diagnosed, and I came across something called "Unstable Pupil Reflex". It is a little test you can do at home in front of the mirror in a dark room, with a torch. You must be in complete darkness for at least 2 minutes, before switching on the torch, in front of the mirror, to see what happens to your pupil.

My pupils reacted exactly as they did in this youtube video - which can indicate something wrong with your adrenals. I have spoken to people in the medical profession, and they say this test has no scientific basis. But, there is no harm in trying. My pupils behaved like the one in the video, and I have Addisons.

The link to it is here: youtube.com/watch?v=OAkftY6BZS0

Let me know how you get on.

Best wishes
 
Sam: I do feel like Addison's is definitely still possible, because of the fact that I have low sodium and get low blood pressure attacks frequently, and because pred works, and because I do feel like my test results are confusing and not "textbook" normal results. I know that the pred could be IBD or it could be Addison's or it could be something else (not sure what though!). I just wish things were clearer. I've got to talk to an endocrinologist and maybe that will provide some answers. I didn't call my GP yet to get a referral because I had a bad day at work - found out one of my co-workers (the second co-worker this month) has cancer. So I was sort of depressed and stressed about that and didn't want to deal with the stress of calling the doctor. I'll call tomorrow for the referral.

Glad to hear you got your GI appointment bumped up! I hate waiting months just to see the doctor. They tried to pull that stunt on me when I was scheduling my colonoscopy - I called them in March, and they said, "Oh, we can get you an appointment in June." I was so frustrated but thought that I would just have to wait. But after a few weeks of waiting and being in a lot of pain and having a lot of d, I called them back in tears and said I just couldn't wait that long. They had said at first that they had no cancellations and no openings, but after they heard me crying and pleading, they "suddenly" had an opening the following week. So that was great, even though the colonoscopy didn't find anything. I was just glad to get it over with and didn't have to wait any longer!

Oregon: Thanks for the link - I'm at work right now and youtube is blocked from here, but I'll definitely check it out when I get home tonight. I'll let you know how it goes! Thanks again. :)
 
Well if that's what you think then keep pushing for answers Cat. It can be so draining though can't it. I am not surprised that you didn't want to do it yesterday. What sad news for you. Why do these things always seem to happen together? I hope that your collegues get the treatment that they need. I am still hopeful that the red bumps they found during my gastroscopy "mean" something at last. I was just pleased that they eventually found something not quite right (I know that sounds crazy but I also know that you'll know what I mean!)
Well if you can get an appointment with an endocrinologist and get the gastroscopy done then at least you'll have both posibilities covered! Lets hope that there are answers coming your way very soon.
I hope that you are not too stressed and unhappy today
 
Hi Cat, hope you find answers soon!!

Oregon, my pupils do the same thing, I actually know the person who made that video and she is a gem, she knows her stuff.
 
Cat: Thanks, my trip was lovely! I had a great time with old friends. I brought my special crispbread, so I wouldn't starve when the others had pizza. ;) And I had a glass of wine, and I was fine the day after! ;) Curious to hear your news, as soon as you get them. Has your brother arrived yet?

Bushy: Isn't it great to have a haircut, and feel beautiful after? :) I just recently did the same, and it made me feel tons better. My hairdresser curled my hair after the haircut, and I felt so pretty! ;) What's your colour?
 
Oregon: Last night I tried the thing in the youtube video - sat in total darkness for 5 minutes (I know you said 2 minutes but I wanted to be sure I had been in the dark long enough), and then shined a flashlight into my eyes and looked in the mirror to see what happened. Well, my pupils didn't waver and change like in the video, they were unmoving. So I'm still just as confused as ever about what's wrong with me!

Sam: Yes, it is incredibly draining trying to get answers. I can't even count the number of times I've called my GI and GP - it's dozens and possibly hundreds at this point. I didn't call for a referral yesterday either because I was just so tired of dealing with this stuff. And now my eyes don't do the pupil thing, which is making me second-guess things... I might just wait until after the endoscopy and then if that's normal maybe I'll see an endocrinologist. Things are further complicated because it's getting expensive to keep seeing doctors and having tests! It's such a problem because I need to keep working to pay my bills and to continue my health insurance (I get my insurance through my work), but I need to keep going to doctors so I can figure out how to be healthy enough to keep working so I can pay my doctor bills...

Sophia: My brother flew home last night, and he's with our mom today taking care of some errands with her, and he'll get here to my house tomorrow afternoon. It took longer than we thought for him to get back because he banged up his knee and it got infected, and he wanted to make sure it got drained & healed before he left the military. (He had his health care 100% covered by the military while he was there, but once he left he now has no health insurance, so it was important to get that done while he had coverage.) So he'll be here tomorrow. I'm excited, I haven't seen him in almost 2 months. :)
 
Morning Cat!! I see your catch 22 is ongoing. Good luck with the docs and the bro!!!
 
Thanks Mark! Yep, still no answers. I'm having an endoscopy on the 16th, and I'm not expecting it to show anything, but at least if that comes back normal it'll rule out celiac 100% and that's one thing I can cross off my list of possibles (and my mom, who is 100% convinced I've got celiac, can finally stop harassing me about my gluten consumption). After the endoscopy I think my GI wants to try a contrast x-ray (he also wants to do an MRI but that's mostly to check my liver, so I'll hold off on that one for now).
 
Hello Cat just a though I was having. Where do you work and what do you do for work. Seeing how 2 of you co workers have come down with cancer and now you being as sick as you are have you considered something work related making you feel this way? Or maybe something environmental? Just a thought I wish you well.
 
Hi TheEnd, I don't think it's my workplace or environmental factors that are causing all the illness. I work in an office, I've got a desk job. So we're not working with chemicals or anything weird like that. My one co-worker has throat cancer, which is most likely because he's a long-time smoker. My other co-worker has prostate cancer (obviously I'm not worried about that myself since I'm a female). I think it's just a coincidence and maybe our conditions are aggravated a little by workplace stress or something like that.
 
Hi Cat I hope you get a diagnosis soon, it's horrible when it gets dragged out like this! Fingers crossed that you get a definitive answer soon :hug:
 
Ya I understand Cat. It just stinks being sick. I am sick 90% of my days also but at least they know what's wrong with me. I pray they figure it out for you soon. Cancer is out of control we have lost 3 family members and 2 others have be told they also have cancer. I am starting to believe we are all going to get it.
 
I'm sure you must be very excited about your brother coming today! :) Enjoy your time together! :)

xoxo
 
Thanks Silver, TheEnd, Dusty, and Sophia. No new news to report - I'm holding off on trying to get an endocrinologist referral until after my endoscopy (2 weeks from today). I am just exhausted and need a break from calling my doctors. I'm just going to take things easy and try to relax. Assuming the endoscopy doesn't find anything, I'll see about pursuing an endocrinologist referral then.

Sophia, my brother moved in yesterday and so far so good! He's also taking a couple of weeks to rest and recover from his military experience, and then he'll start looking for a job, and then when he's got a little money he'll look for an apartment of his own. I can tell the military has done some good for him, as he used to sleep until noon, but today he was up at 6 AM and he went for a 2 mile run. I can tell he's glad to be home, he was happy to be able to watch TV and use a cell phone again. :)
 
I'm glad to hear that you are at least trying to relax a bit Cat. I know how hard that is when you don't have a diagnosis! Hopefully having your brother around will keep your mind off things a little bit.
I do hope that youre endoscopy finds something to point the doctors in the right direction. I'm still waiting for my results and see my GI next week.
 
I have Addison disease. I took the short test, and my levels looked normal and I was told I was a ok. But when i took the long test where they gave me shots of adrenalin every few hours, and i still slept through them, Addison disease showed up.
Make sure you take the long drawn out test. The short one can lead to misdiagnosis and you have had plenty of that.
I have secondary Addison. Plus, my potassium levels were not like they should be. I was low on K instead of high. Turns out i have a kind of birth defect where a tube leading from my kidneys is too big, and K molecules were escaping through it.
Now, lately I've experience a shedding of the mucus membrane of the large intestine, and bloody stools. this sounded like Crohns. I see my endocrinologist next Monday and am anxious to find a resolution to this. I have always heard that Crohns and Addison were related and can follow each other in diagnoses or progression of said disease.
Good luck to you, and to me.
maidensolo
 

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