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So anyone still dealing with Pituitary or Adrenal issues after discontinuing steroids post-surgery.

 

My wife has suspected pituitary insufficiency.  She has been unable to get below 6mg of prednisone (30mg of hydrocortisone).  Once below, she has extreme malaise, daily fevers and general feeling of crap.

 

Adrenals seem to be functioning when stimulated, but morning Cortisol levels have been very worrisome.  Last test showed a morning cortisol of 0.7 (normally 6-15 I believe).  Anyway,  it is suspected that this was all caused by years of steroids.  She was in complete adrenal crisis three days after surgery and ended up in Intermediate care unit with a bp of 80/40 and temp of 103F.

 

Anyone else have or heard of these types of long term issues??   

 

There is a test to evaluate the Pituitary, but it can be fairly dangerous, so we'll wait and try to wean roids one or two times more over the next year if nothing changes.  

 

Dan

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Secondary adrenal insufficiency is not too uncommon. This is a primary reason that steroids should not be considered as maintenance treatment for UC.

 

Anyway, it is pretty rare for this to be permanent. But, the longer you have taken steroids, suppressing the pituitary, the greater the risk it may be permanent. That said, some people have taken many months and extremely slow tapers before the adrenals would finally "wake up." They say it can be a 1:1 recovery rate ratio. If you were on steroids for six months, it can take six months to recover.

 

http://www.nadf.us/adrenal-dis...renal-insufficiency/

 

Hopefully, things turn around soon for her!

 

Jan

       I want to know what other kinds of problems prednisone could potentially cause with the adrenal glands. I first got sick with UC when I was 13 and was placed on the highest possible dose of it at the time, for many months. I had just about every known side effect. I was able to taper off easily and all the side effects cleared up - except for one. I'm now 29 and ever since then, I've had an abnormally high heart rate and no one knows why. I'm convinced that something happened to me at 13 caused it, but doctors I've talked to don't seem to think so, or think that it's a big deal.

 

      Whenever I try to discuss this with doctors, they always misunderstand me. They think I'm talking about palpitations or an irregular rhythm. That's not what this is. My rhythm is normal. It's just unusually fast. I think something hormonal is causing it.  

 

      I did get a cardiology work up at 14, but they didn't find anything. All they did was a 24 hour monitoring test. When I got my J pouch at 26, my surgeon did notice my high heart rate and was concerned about it. The cardiologist he sent me to, had me try a beta blocker medication for my surgery, which did nothing. He was the first doctor, who I felt really listened to me and agreed that something could have happened when I was a kid. He told me I should see an endocrinologist. He also said he'd run a lot of test on me while I was in the hospital to finally find out the cause of this problem, but he never did. I'd like to go back to him, but he doesn't take the insurance I have now.

   

Last edited by melissa111

I had high dose prednisone when I was a teenager. My whole life I had an abnormally high heart rate, but no cardiac abnormalities, other than what was determined to be "inappropriate sinus tachycardia." Basically, this means a fast heart rate for no particular reason. Fast forward some years, and I began having palpitations for real, 200+ beats per minute lasting up to an hour. I go to the doctor and I have another cardiology work up and screening for an adrenal tumor (pheochromocytoma).  Both come up positive, with the cardiac event monitor showing supraventricular tachycardia and 24hour urine positive for an adrenal tumor. Apparently, earlier abdominal CTs showed a mass on my left adrenal too. 

 

I was having these attacks at least daily. The story was that I had a defect in my cardiac conduction system that was there since birth. It just took 50 years before it went completely haywire. That was fixed with ablation therapy. A few weeks later I had a left adrenalectomy. Strange thing was that follow up urine tests still showed mild elevations indicative of the adrenal tumor. Further imagine showed the tumor still there, even though the adrenal was gone. Turns out, it was outside of the adrenal gland, so I still tend to run a faster than normal heart rate. I take a beta blocker for it and it works for me.

 

Long story short, it was not due to prednisone, but something I had all my life. Granted, taking prednisone might have triggered something at one point or another. Who knows?

 

The main thing is to be alert for things changing as time goes on. Just because there is nothing showing up now, it does not mean it will not later on.

 

Jan

       Did your high heart rate start before or after you took the prednisone, and what kind of tumor did you have? Everything you've described is exactly what I think I have. I discussed the possibility of an adrenal tumor with the cardiologist I saw before my J pouch surgery. We discussed the 24 hour urine test and he told me I have a lot of good reasons to see an endocrinologist.

 

My problem is, I usually have such a hard time describing this situation to doctors and getting them to take it seriously. I've had various abdominal imaging test because of my surgery and no one ever said anything about my adrenals. But I think it's very possible that there could be something there, that was missed because they weren't looking specifically for adrenal issues. I once had a HUGE kidney stone that caused a lot of pain and was repeatedly missed for years, despite several x rays and even an MRI, so I know that  can happen.

 

The cardiologist I saw before my surgery, is in New York, at Mount Sinai, where I had my J pouch. I'd love to go back to him or anyone else he recommends at Mount Sinai, but they don't take my insurance and I'm not able to get to the city now, anyway. So I'm stuck with doctors in central NJ area who accept Medicaid.

 

 

    

Hard to say about the heart rate. I was 15 and I probably always ran high for my resting heart rate, but not crazy fast. I know I always had trouble with endurance exercise. Of course, when I would see a doctor or was in the hospital, I was sick, so there was a reason for tachycardia. Otherwise, I just ran 90-110 as my resting rate. It was not until I had the overlapping SVT that they paid attention. I did not see an endocrinologist, but he was brought in to consult and reviewed my records. The 24 hour urine catecholemines only showed a mild elevation, but the CT finding was enough to get everyone on board with the adrenalectomy. The ganglioneuroma I still have was always there and it can secrete hormones randomly. It is not dangerous, so I am OK with leaving it alone.

 

Ask about seeing an endocrinologist, or you can get the screening tests for pheochromocytoma from your primary to help narrow the scope. But, if you have an intermittently secreting tumor, it can be a challenge.

 

Jan

Last edited by Jan Dollar

Thank you! This helps me a lot. Your situation sounds almost EXACTLY like mine, except I'm pretty sure my heart rate was normal before age 13. I think if I do have the tumor, it is intermittently secreting because I only have symptoms at certain times and the triggers are hard to explain to doctors. I'm afraid any test I do won't be accurate for that reason.

 

My resting heart rate is always higher than average, even when I'm calm and relaxed. But on days when I'm stressed I can really feel it and I'll have other symptoms, as well. It's like my body is "running hot," so to speak. It's a very distinctive feeling, that's hard to describe. I don't mean a fever, but just a general sense that everything in my body has been sped up. A few times after this has happened, I did actually have a low grade fever the next day, though. I also tend to have a lot of foot cramps when this happens. 

 

As long as I get an excessive amount of sleep and avoid all (and I really do mean ALL stress), I'm ok. On days when I have to get up extra early and do anything the slightest bit physically or emotionally draining, my resting heart rate goes through the roof and I'm an emotional wreck. This makes it hard for me to work and function. It's a purely a physical problem, not psychological. I had my thyroid tested when I got my surgery, the levels were normal.

 

I realize this probably sounds stupid, but I wonder if I do a 24 hour urine test, if I should purposely not sleep a lot the day before, in order to trigger my symptoms.  .    

So, what is your resting heart rate when you are not under stress? I ask because THAT is what is what you should be looking at. Stress and anxiety are normal triggers for adrenaline. When I had my 24 hour cardiac monitor, I had runs of tachcardia while sleeping or reading the newspaper. 

 

So, no, I do not recommend that you increase your stress during the test, but just go about your normal day. 

 

Read here for more info on inappropriate sinus tacycardia:

http://content.onlinejacc.org/...px?articleid=1486711

 

There are a LOT of  normal triggers for tachycardia. If you have a pheochromocytoma, it secretes all the time or randomly, not in response to stress.

 

Jan

Last edited by Jan Dollar

I have Addison's Disease (secondary) caused by the treatment of my UC in my teens.  The dosage was (the medics have acknowledged in retrospect) too high and for too long, and I was diagnosed with the Addison's and Hypothyroidism about five years later.

 

I'm on Steroid replacement therapy for life, most probably.  It's generally very manageable, and after the UC doesn't seem like such a big deal, but energy and tiredness is an issue.

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