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07-13-2010, 05:51 AM   #31
Sophia
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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!
Good luck, Cat!!! I'll be crossing my fingers that they find out what is wrong!

xoxo
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07-15-2010, 10:36 AM   #32
bushydougie
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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
07-15-2010, 12:26 PM   #33
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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!
07-20-2010, 02:45 AM   #34
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Good luck, Cat! Really hope they figure something out from this test! *hug*

Let us know how it went! x
07-20-2010, 05:57 AM   #35
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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.)
07-20-2010, 07:33 AM   #36
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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!

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,
07-20-2010, 09:58 AM   #37
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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.
07-20-2010, 01:22 PM   #38
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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
07-20-2010, 02:53 PM   #39
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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.
07-20-2010, 03:40 PM   #40
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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.
07-21-2010, 07:43 AM   #41
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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.
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.
07-21-2010, 11:38 AM   #42
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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!
07-21-2010, 12:24 PM   #43
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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!
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
07-22-2010, 10:35 AM   #44
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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!
07-22-2010, 01:49 PM   #45
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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.
07-22-2010, 05:29 PM   #46
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I hope you get some answers, Cat! Yeah, ditto that, let us know.
07-23-2010, 04:25 PM   #47
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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_st...ion_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.
07-23-2010, 04:34 PM   #48
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...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!....
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 ) 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....
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07-23-2010, 04:58 PM   #49
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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.
07-24-2010, 03:56 AM   #50
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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
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07-24-2010, 06:57 AM   #51
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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?
07-24-2010, 08:05 AM   #52
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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
07-24-2010, 04:06 PM   #53
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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!
07-26-2010, 04:04 AM   #54
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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!
07-26-2010, 06:17 AM   #55
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Thanks Sophia! Only 2 hours to wait now...
Hope today goes well for you Cat. Thinking of you
07-26-2010, 02:24 PM   #56
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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.
07-26-2010, 05:23 PM   #57
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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.)
07-27-2010, 08:30 AM   #58
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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...
07-27-2010, 12:08 PM   #59
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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.
07-29-2010, 08:39 AM   #60
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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
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