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Low blood pressure and fatigue these past few months...

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Posted 8/29/2012 10:49 PM (GMT 0)
I probably should have checked this out a while back but I've been exhibiting the following symptoms after getting off prednisone/entocort - fatigue, low blood pressure (100/60), lightheadedness and some pain in the adams apple region of the throat. It's worse during the day and tends to even out at night.

My guess is that it's a thyroid issue, and I should have my thyroid levels tested. Anyone have similar issues?

Post Edited (StealthGuardian) : 8/29/2012 4:53:11 PM (GMT-6)

Posted 8/29/2012 11:38 PM (GMT 0)
The majority of your symptoms are more than likely due to prednisone withdrawl. I hope you didn't just quit cold turkey without the doctors go ahead. That can be very bad. I don't think that would cause the low blood pressure though. Do you have bloody diarrhea? Bleeding can cause a drop in blood pressure.
Posted 8/30/2012 3:03 AM (GMT 0)
Hi StealthyG,

GaryL is probably right-on pointing to Pred withdrawal being a highly likely cause of pain, fatigue, low bp, ...

You might want to use the Search function on this UC forum on "Prednisone withdrawl", and "Adrenal Insufficiency". After prednisone taper, patients suffer while docs just aren't on the lookout for it.

So, if you pursue evaluation by blood draw - it might be helpful to request these additional tests:
▪ Cortisol & ACTH (adrenocorticotropic hormone)
▪ B12 & Folic Acid
▪ Blood Count & Comprehensive Chemistry

Below is copy & paste of previous postings about my experience with tapering off prednisone and a 2+ year recovery from Adrenal Insufficiency.

"Prescribers fail to explain the risk of developing Adrenal Insufficiency as a result of having taken corticosteroids, e.g., prednisone. Migraine headaches, bone pain, and extreme lethargy were the physical symptoms that had me down for two years. Chronic depression was also exacerbated."

"The disabling symptoms of adrenal insufficiency are not due to "withdrawal" from prednisone. Rather, it is the failure (insufficiency) of the adrenal glands to produce the all-essential cortisol. Prednisone is far more potent than it's natural analogue, cortisol. Symptoms of insufficiency can emerge during and after tapering off prednisone, and vary in severity. Taking prednisone overrides your natural production of cortisol. Developing adrenal insufficiency is more likely after taking high doses (~40 mg) for long periods (~several weeks). A rapid taper off of prednisone (of dose and schedule) hastens the emergence and severity of the symptoms."

Hope this helps. Wish you the best.
Ciao, DennnyRae
Posted 9/1/2012 4:47 PM (GMT 0)
StealthGuardian,

you should really get your hormone levels checked out, prednisone affects your body's hormones as mentioned by DennyRae; when I got mine checked my cortisol levels were extremely low, my dhea was also low, etc. You should find a hormone specialist and let them check all your hormone levels. In the meantime, try to get to bed by 10pm and avoid stress.

NBT
Posted 2/4/2013 11:37 PM (GMT 0)
Update: DennyRae hit the nail on the head. It was adrenal insufficiency and we're trying to do slow prednisone weans so that I can get my adrenals working again. Like Denny mentioned, the best test for this is an ACTH stimulation test which measures cortisol levels @ 0, 30, 60 minute intervals. My values were far below the normal. Basically, you'll know it's adrenal insufficiency when your body isn't able to handle any stressful situation. For me, it's getting anxiety attacks whenever I go out in public. My adrenals are just unable to generate adequate cortisol levels to handle it. Another thing to look out for is extra body fat or rolls underneath the stomach area -- a clear sign of adrenal insufficiency.

It's funny because I was never on more than 15 mg of prednisone last year and goes to show that even weaning from small doses can be a tricky endeavor. I want to mention that I was on entocort for a few months, so that might have collapsed my HPA axis.

I'm taking 2.5 mg @ the moment, and I'm not sure if the adrenal glands will start working optimally - I may just have to beg for hydrocortisone to improve quality of life.

I hope this helps anyone who has to deal with it in the future.

Post Edited (StealthGuardian) : 2/4/2013 4:43:09 PM (GMT-7)

Posted 2/5/2013 3:40 AM (GMT 0)
I had those same symptoms when I was anemic. Perhaps getting some bloodwork isn't a bad idea...
Posted 2/5/2013 4:07 AM (GMT 0)
What's the best way to learn about adrenal insufficiency and what to do about it? I doubt very much my doctor will even agree it's a valid issue.
Posted 2/5/2013 5:17 AM (GMT 0)
Adrenal Insufficiency is a very real diagnosis - it's such a scary situation to be in because your body requires cortisol and could go into adrenal shock without it. There are two users here who went through something similar but managed to recover - search Adrenal Insufficiency and Journey2Health or DennyRae.

GIs don't test for it because it's an endocrine issue and they aren't aware of the dangers weaning too quickly. Finding a good endocrinologist is key to this. The best way to get tested is to get something called an ACTH stimulation test where they inject synthetic ACTH hormone, which in turn stimulates the adrenals to produce cortisol (HPA axis mechanism). If the values show up low, then that means that the adrenal glands aren't producing enough cortisol.

So how to avoid this dangerous predicament? Very slow weans of steroids when trying to taper. I'd say 5 or 10 mg weans are wayy to much and don't allow the adrenals to recover fully. I'd do weekly 2.5 mg tapers in the future to allow adequate time for the glands to recover and start producing cortisol.

Right now my adrenals haven't completely recovered and I'm still experiencing bouts of fatigue and low blood pressure, so it's a long and grueling process to get the adrenals to wake up again. It could take months to years for the glands to return to normal. Sometimes, it never does so people have to be on permanent replacement therapy of cortisol. I'm crossing my fingers and hoping that it's not a permanent thing for me.
Posted 2/6/2013 3:47 AM (GMT 0)
Thanks so much for the explanation.

You know, what I was thinking you were talking about is adrenal fatigue. Is that a valid diagnosis?
Posted 2/6/2013 4:09 AM (GMT 0)
Hi Lodi-

Honestly, there's no such thing as adrenal fatigue; either the cortisol tests (AM, PM cortisol, ACTH stim test) show diminished function of the adrenal glands or the doctors will throw it out. If the tests show reduced cortisol function, then the official diagnosis is adrenal insufficiency and most endocrinologists will begin replacement therapy. From my understanding, adrenal fatigue isn't recognized in medical literature.
Posted 2/6/2013 8:58 PM (GMT 0)
It floors me that a GI wouldn't look at this problem particularly when prednisone tapering is a problem.

I started feeling not as good last week when I was still at 25 mg of prednisone. I chalked it up to a possible cold because I got a sore throat and a big cold sore again. I've tapered to 20 mg pred now and it feels like my muscles aren't getting any energy, my blood pressure is low (105/54) and I'm nauseated and feel shaky. Still hungry though.

Since it's Wednesday and my GI is in, I put in a call to see if I should up my pred dose and wean slower. It sounds like I should call my GP and ask to be tested for adrenal insufficiency too? So you either have it or you don't, right?

My focus for the prednisone taper was just around the number and quality of BMs (which is improving but still high at 7-9 /day, still blood with every BM but lessening, starting to get some form with some BMs).
Posted 2/6/2013 11:07 PM (GMT 0)
Hi Lodi -

It could be the result of the wean. Everyone seems to experience some sort of AI symptoms from weaning. If the symptoms you have linger for too long, then it's worth getting looked at. But of course you should confirm with your GI to see what he says.

The only way you'll know that your body isn't producing enough cortisol is when you are completely off the prednisone. So at your current stage, since you are already on more than what the body normally produces (~7.5 mg), it's impossible to tell. You'd have to wait to completely be off the pred to get the ACTH test done.

I do think it's very unlikely you have AI, as it isn't too common and it usually the result of super fast tapers or going cold turkey.
Posted 2/7/2013 12:44 AM (GMT 0)
OK, Good to know.

I'm understandably worried I think because I was unsuccessful tapering off of prednisone in December and I ended up in the hospital for 8 days. Now I'm starting to experience the same symptoms with this taper.

I had all sorts of symptoms back in December, which also included low blood pressure, extreme fatigue, horrible nausea. I don't know if I had that blood test done when I was admitted to the hospital or not.

So, if pred weaning causes AI symptoms, it seems that it would be prudent to at the very least taper more slowly.

GI doc didnt call back today, I'm not surprised.
Posted 2/7/2013 1:26 AM (GMT 0)
Were you in the hospital for UC issues? Those symptoms could be UC related. Are you feeling lightheaded when waking / standing up?

Yeah. Slow tapers are the key here. I think DennyRae suggested .5 mg tapers, which is kind of crazy but understandable.

Even 2.5 mg tapers leave me feeling symptomatic for a few days. I've come to learn that pred is a stronger drug than I anticipated - taking as little as 1 mg will throw the body out of alignment for a few days.
Posted 2/7/2013 3:28 AM (GMT 0)
Yes, I was in the hospital because of UC issues. I was having 25+ bloody D's a day, my body broke out in a blistery rash, I started to get sores in my mouth etc, etc. I might have gone in a few days earlier but it was Christmas and I was trying just to stay hydrated until after the holidays when I could call my doctor. I ended up with a blood transfusion, antibiotics and IV prednisone.

I always tend to be a little lightheaded when I stand up, so I automatically stand up slowly. At night when I wake up and have to rush to the bathroom, I've felt woozy. The bathroom isn't too many steps away thank goodness. I'll mention that at my next appointment. The muscle weakness bothers me most, then the nausea.

My GI ended up calling just after I posted earlier. He's not concerned with the muscle weakness and stuff but he is concerned that I'm still having 7-9 BMs a day. He wants me to stay on the 20 mg dose for two weeks and then go down to 15 and call him to let him know how I am doing.

Thanks for making me aware of and explaining this AI issue though, it's good to know about. (along with the thousand other things that seem like they can go wrong shocked
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