Crohns and Addisons disease!!

[lizbeth]

I attended my diabetic clinic today for an urgent appointment as I'm having trouble controlling my blood sugars. A short while into the appointment my Dr asked if I had ever had my adrenal function tested....answer no, next thing I know I'm being whisked round to the nurses station to have a "synacthen blood test"!! So now I'm feeling a lot overwhelmed, the test is being done to rule out addisons disease and while I'm trying very hard to think positive that I don't have it, it is quite possible I do (based on symptoms and dad having it) .

I just wondered if anyone else is living with crohns and Addisons and if so, how do you manage?

 

[Cat-a-Tonic]

Hi Lizbeth, I don't have Addison's, but like you I also went through testing for it. I had the ACTH stimulation test - I'm not sure if that's similar to the blood test you mentioned having. My GI decided to test me for Addison's, because he said that sometimes Addison's can mimic Crohn's-like symptoms (diarrhea, nausea, weight loss, etc) and it also responds really well to pred. Apparently the ideal dose of pred for an Addison's patient is 7.5 mg per day, and I had a really good response to a trial run of 10 mg/day, which is why my GI suspected Addison's. It was ruled out for me though - I hope it's ruled out for you as well.

Do you respond really well to a low dose of pred? Do you have any skin discoloration/darkening? I know that's a common sign of primary Addison's (secondary Addison's doesn't cause skin darkening). Hopefully you don't have Addison's - I know it's quite rare, about 1 in 100,000 people have it from what I've read. Most doctors don't know much of anything about it, so that's promising that your doctor is testing you for it - best case scenario, you can rule it out and not worry about it anymore. Good luck with the bloodwork, I hope the results come back quickly and are normal.

But if you do have Addison's, you should still be able to do okay. A low dose of pred usually keeps it in check quite well from my understanding - and I think 7.5 mg is low enough that you wouldn't get moon face or many side effects. Anyway, please keep me posted on the bloodwork results, and best of luck - I hope it's not Addison's!

 

[lizbeth]

Thank you for your reply. I think the test is the same or similar to yours. I had no idea the cross over in symptoms so was quite surprised when I did a little research. I don't have the darkened skin...I think? My Dr did seem quite concerned especially when he heard my dad has Addisons, but I am trying really hard not to be too worried for now. I've only had pred once once and had a good response (well my joints felt amazing) but unfortunately it caused a lot of trouble with my diabetes. Dad is treated with hydrocortisone and fludrocortisone (when he takes them). I'm going to try not to diagnose myself and wait for the bloods to come back and I'm really hoping the Dr is just trying to rule it out too, couple of weeks to wait and then I'll know. Thanks again.

 

[xmdmom]

Addison's is very treatable. If you end up getting diagnosed with addisons, you would need to take a daily replacement of prednisone (or hydrocortisone) and florinef which should not cause any adverse effects, but you'd also need to take stress doses when you were ill with Crohn's or other sickness or if you had severe stress such as surgery. (The replacement steroid dose should not have a bad effect on blood sugars; the stress dose would raise blood sugars but an endocrinologist could help make a med regimen for times that a person is on stress doses.) I have never heard of someone waiting a couple of weeks for the results of the synacthen test. The cortisol part of the test should be back the next day.

Was your trouble a lot of low blood sugars? (Addisons makes people with diabetes extremely sensitive to insulin.)

Other than the low blood sugars, are you feeling ok?

You said you took prednisone one time -- was it recently? Prednisone can affect the synacthen test some depending on the amount of prednisone you were on and how long you were on it. ACTH levels are high in addisons but low in people whose adrenals are not working because of previous prednisone therapy.

Best wishes and Hugs! Hope you get your results soon, and they are normal.

 

[lizbeth]

Hello Xmdmom. Yes I am having hypos nearly everyday and overall not feeling great, aches and pains from head to toe, never mind the crohns fun . I'm really tired but not sleeping good at night so there are lots of reasons for the tiredness.

I had a 4 week course of pred 6 months ago which really helped the aches and pains but made a mess of the diabetes, that was expected hence just the short course and I haven't been able to drop the weight that the pred and double insulin caused. Doesn't help the knees too much lol.

I'm tryin to remain optimistic that I don't have Addisons,don't think I could cope with that as well. So I will keep my fingers crossed that it comes back clear. Possibly takes so long cos of the NHS over here, I'm still waiting for pill cam results from 5 weeks ago!!

Thank you so much both for your kind words.

 

[Cat-a-Tonic]

5 weeks honestly isn't too too bad for pill cam results. Here in the US, I was quoted a month for pill cam results, although my GI was a bit speedier and it was "only" about 3 weeks for me to get them back. The Addison's bloodwork should hopefully come back much more quickly than that though. Please keep us posted! I hope it gets ruled out and you don't have to worry about it any more.

 

[leloupaccroupi]

Hi! I realize this is a relatively old thread but I'm a long term Addison's Disease patient who's just now been diagnosed with Crohn's as well and I tell ya, I was going to ask you the same question...

How do YOU do it?!

Also did you ever get answers about your potential Addison's?

I just came off a bout with Imuran induced acute pancreatitis several weeks ago and I think I may have tapered of my stress doses too quick and I'm feeling a little shaky at points the last couple days. I can't seem to find a pattern with it.

Anyways, I hope all is well with everyone!!

Keenan

 

[Cat-a-Tonic]

Hi Keenan, I don't think Lizbeth is active on the forum anymore and I wasn't diagnosed with Addison's, so I'm afraid I can't be very helpful. I hope you can get things calmed down again soon. It's always such a delicate balancing act when you're dealing with multiple chronic conditions, I really feel for you. Wish I could give you some answers.

 

[leloupaccroupi]

Not a problem Cat! I really appreciate the response, I can usually balance them pretty well but the recent hospital stay threw me for a little rocker with said balancing act Thankfully with the Addison's side being pretty treatable, I can find ways to supplement with medications accordingly and I know my limitations with both.

Thank you for the thought and I hope all is well with you!