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Seeing an endocrinologist tomorrow

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Posted 4/27/2010 10:35 PM (GMT 0)
I have had so many problems since surgery (which also coincides with stopping Prednisone, which I was on for a year), so finally my cortisol levels were tested and they are low. My surgeon told me to see an endocrinologist and I was put back on 10mg of Prednisone (at the suggestion of one my surgeon consulted with). I called all around and couldn't get in to any until July at the earliest, but luckily my surgeon talked to one and I have an appointment for tomorrow. Yay.
Anyway, when I looked up what low cortisol levels can cause, I found
"Early symptoms are generic and can be easily confused with other disorders, specifically, fatigue, headache, weakness, dizziness and orthostatic hypotension (low blood pressure upon standing). Nausea, vomiting, and diarrhea are often present as well as an inability to tolerate cold temperatures. Left untreated, the symptoms progress into muscle weakness, weight loss, dehydration, hypotension, irritability and depression. Ultimately, pain in the abdomen, back or legs, collapse of the peripheral blood vessels and extreme weakness would all indicate adrenal crisis"

These are all the symptoms I have been having, so I really hope this is the issue and I can get treated finally.
Posted 4/27/2010 10:41 PM (GMT 0)
Me too, Pam! I really hope this is what's going on, so you can get to feeling better. You've been through so much!
Posted 4/27/2010 10:42 PM (GMT 0)
Wow...it's good you researched it and found a possible culprit in your symptoms.

Let us know the outcome of the appointment.

quincy
Posted 4/27/2010 11:07 PM (GMT 0)
I hope the endocrinologist is helpful. I've been thinking I shoudl see one, I never feel 100%. Goodluck tomorrow!
Posted 4/27/2010 11:22 PM (GMT 0)
good luck! btw i was also on prednisone for almost a year when i had surgery, but was prescribed a pred taper by my surgeon after both of my procedures.

my taper (starting at 15 mg) lasted 6 weeks after my first surgery and 4 weeks after my 2nd op.
Posted 4/28/2010 12:58 AM (GMT 0)
     So glad that you have an appointment tomorrow Pam.  Waiting an extended period of time to see a specialist is the pits.  Is Addison's Disease a possibility?

     My GI doctor said something about having my adrenal glands checked out after I get off this dreaded prednisone....hoping in two weeks.

     You've been through soooo much.  Still praying for you...remember this too shall pass.  Keep  your chin up sweetheart!! smilewinkgrin

Posted 4/28/2010 12:44 PM (GMT 0)
Thanks! I hope they can figure something out. I did taper off the prednisone before and after surgery, but it was 5 mg a week, and for some people that might be too fast.
Posted 4/28/2010 2:07 PM (GMT 0)
Good luck Pam - It would really make sense and be so nice for you to have an answer (and a solution!!)
Posted 4/28/2010 8:22 PM (GMT 0)
     How did you make out at the Endocrinologist's office?
Posted 4/28/2010 8:48 PM (GMT 0)
Well, it was basically useless. They just weren't really listening to me and didn't really understand what was going on and said that low cortisol levels wouldn't cause those problems (even though online it said it does) and that my levels aren't really that low anyway. They said I really didn't need to be on 10mg of Prednisone because that is in excess of what the body produces. They are having me wean to 7.5 for a couple of days, then 5 for 3 weeks, then go in for another test.
The doctor was just weird...she was asking me questions about whether my back is straight and whether I have stretch marks but didn't seem too concerned about my actual symptoms. She also didn't bother to read the stack of notes my surgeon sent over explaining my surgeries and all the problems I have had.
She also said I should not have been prescribed the Florinef, because it is used to treat low blood pressure when your cortisol is low (I did have low blood pressure--today it was 110/70, so it's not like it's getting too high). That's not how the drug was explained to me, but oh well.
I just looked up what a normal cortisol level is and 6-23 in the morning is normal. Mine was 5.8, so it IS low but not low enough to matter, I guess
Posted 4/28/2010 11:48 PM (GMT 0)
interesting. How did she end the appointment?

Did she at least do other blood tests as to the suspect of what might be happening with your symptoms?

Maybe the stretch mark question was to be related to the pred use.

Is your back straight...why...does she suspect osteo?

Will she be sending you for a possible bone scan?

Worse when appointments one waits forever result in a waste of freaking time.

I guess your surgeon won't be too pleased.

Maybe your GP can do more digging?

What a let-down Pam.
quincy
Posted 4/29/2010 12:04 AM (GMT 0)
Unfortunately my primary care doctor is at a county clinic and SUCKS. I only go to him for medical clearance for surgery. I really need to switch

They did no blood work now. She kept asking if I was taking the prednisone to treat UC now after I repeatedly told her I do not have UC, as I have no colon and that I was on prednisone because an endocrinologist told my surgeon to put me back on it. She could not seem to understand that I was NOT on it when my levels were tested last week. She had another doctor come in and they decided I would come in a month from now after tapering to 5 mg and have blood work done. I have no idea why she was asking about my back, as she didn't say anything about a bone scan or anything. She just did not seem interested in me or my symptoms at all and did not seem to think anything was very serious. She was shocked I am on TPN, even though I have lost 65 pounds since December. She said my lab work from last week was ok--just low chloride, calcium, and something else. She was kind of snotty about it and said "your kidney function is just fine." I had to explain that my levels are now getting better since I have been in the hospital so much and on the TPN and that my kidney function gets very bad when I get dehydrated and then bounces right back. She had no suggestions for any other testing at all. My doctor explained everything in his notes and wrote very detailed things for them to read about everything I have gone through--she just couldn't be bothered to read them. I think he will be very disappointed, since he was really hoping they would be able to help me. He worries about me and has spent countless hours trying to figure things out for me and feels really bad about it.
Posted 4/29/2010 12:28 AM (GMT 0)
Pam, I've been following your updates all along, and feel so sorry that you've had way more than your share of complications. My intuition says that you'll eventually feel well again; it will just take time for you to recover your health through rest and good nutrition. The massive weight loss itself could be causing your body readjustment problems-- such as blood pressure on the low side. But 110/70 is not bad; it's the low side of normal! Terrible that the endocrinologist seemed indifferent; hard to say what caused her attitude. (It may not even have been your issues!) I think that if you can get the j-pouch working w/o further infections, you'll get off Flagyl which is a debilitating drug, and that will enable you to regain strength gradually. Give yourself time! Also, ask for pouch advice from member veterans & j-pouch Website posters; I recall forum members writing in past yrs about probiotics that helped them overcome repeat infections. All best wishes being sent your way; definitely keep us posted. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/29/2010 12:38 AM (GMT 0)
Thanks! I do need to look into probiotics more. I just got confused because there were so many and didn't know what to try.
Yeah, my blood pressure now is fine (especially since that drug raises it). It's just when I get dehydrated that it drops to 80/50, 90/50 and then my heart rate jumps to 130-140

I'm hoping things will be ok with time. It's just odd that after starting the prednisone, I am feeling so much better. Today was the best day I've had in a while. I was able to go to a playdate with my son, to the doctors', to lunch, and for a walk with the baby in his carrier. I haven't even been able to walk through a store without being too tired and sick lately, so a few blocks is amazing. I ate 2 meals today and didn't feel sick. My nurse suggested I take the Lortab I was prescribed for pain to help with the diarrhea and it is working, so my doctor prescribed me a couple more days worth. I went 3.5 hours this morning without going to the bathroom! That is unheard of for me--I have been going every hour. Last night I slept 3 hours straight. I haven't been able to in so long. It just sucks that it takes the pain meds to do that because I can't be on them for very long and nothing else seems to work
Posted 4/29/2010 1:17 AM (GMT 0)
That sounds very frustrating. I had low blood pressure when I was anemic and I had a very high heart rate.

Perhaps you should look for a different endo, the one you went to doesn't sound very effective.

Have you seen a rheumatologist? Maybe you have an underlying issue that causes the fatigue, like Fibromalsia? I always think I have that but my doctor says I don't. I hope you can get to the bottom of the problems you're having. It sounds like you are starting to see some improvement. 3.5 hours is pretty good, if only you could go 5 or 6 hours and get a decent nights sleep.

Sorry you're feeling bad.

Posted 4/29/2010 2:19 AM (GMT 0)
Pam,
This is very disappointing! However, I am relieved to read that you are showing minor signs of improvement. That's what recovery is all about; seeing very small signs of upward improvement stretched out over a year.

Sue
Posted 4/29/2010 3:03 AM (GMT 0)
I wonder if the narcotic is slowing things down - I went every hour on the hour before I started the codeine and metamucil. Huge difference now!

Re the Endo - bummer. Sometimes things get so bad that the docs don't get it, can't admit it, and you have to figure it all out for yourself. Good nutrition - thinking about the drugs you are on and which might be harming you and what might work - experimenting - and doing alot of your own research will prob. help more than most of the docs. Great the the prednisone and narcotics are helping - they might help you settle enough to start slowing improving.

Re probiotics - the most researched one I think for JPouches are VSL#3 and this was recommended by my surgeon to prevent pouchitis. You can order it directly from the maker or from your pharmacy.

Try try not to lose hope! Keep your chin up, don't give up and do every little thing you can to help get yourself as well as you can.
Posted 4/29/2010 11:39 AM (GMT 0)
I can completely relate to what you are going through. After finishing a course of prednisone last year, I began to feel terrible. I was exhausted (could barely get through the day), my hair fell out, my whole body ached, my hands and legs shook, and I had unbelievable pain in my joints.. It seemed like a struggle to do the simplest things, and I felt far worse than I had with the flare.

I was sent from doctor to doctor--my regular doctor, rheumatologist, endocrinologist, etc. They all told me it wasn't related to the prednisone. Finally, after four months, I saw a different endocrinologist who specialized in adrenal problems. She did the proper tests of my cortisol levels. By that point, she said that my levels were lower than normal, but not low enough to have start back on prednisone (she assumed that they were even lower when I was seeing the other doctors). She told me that all of my symptoms were probably caused by a sluggish reawakening of my adrenal glands. It felt so good to have someone take my issues seriously. Basically, she told me it could take up to six months for the adrenal system to recover from high dose prednisone. I had to wait to see if the adrenal glands would go back to producing normal levels. She said she would retest in a month if I wasn't feeling better. Slowly but surely, I started to feel better. My hair stopped failing out, the joint pain stopped, and I was less exhausted. It took nearly six months to feel back to normal, but it did happen.
Also, what cortisol test did you take? I believe the prednisone has to be out of your system for at least two weeks for the test to be accurate. Also, from my reading it seemed like the test that you take in which they inject you with something (I can't remember what) and test your adrenal gland reaction is supposed to be the most accurate. Apparently, the simple blood tests aren't always so accurate and they have to be taken at a specific time of day (my first endocronolist had me take the test at the wrong time of the day, and the second endo said the results were useless).
I hope you feel better soon.
Posted 4/29/2010 2:25 PM (GMT 0)
It was just a blood test. I think the test I am having in a month might be the kind where I will be injected with something. Thank you all for the responses. I will definitely look into that probiotic. I am feeling pretty well again today, so I hope I am finally on the uphill part of this all. I think it is the Lortab that's helping a lot because when it has been about 5 hours after I took it, that's when I start having to go a lot again. That's kind of disappointing, though, because my doctor will probably not keep prescribing it, but it is helping me so much. Every hour compared to every 3 hours is a huge difference.
Posted 4/29/2010 2:35 PM (GMT 0)
Could some of your problems be from anxiety? Or does Lortab constipate you? I find that I have to go whenever I think about it, it's always at the most inconvienent times. I know it is anxiety related but I don't want to be on any more medication on a daily basis.
Posted 4/29/2010 2:38 PM (GMT 0)
I think it's the narcotic constipating me because I'm not really anxious about it, and it wakes me up from sleep every hour if I don't take it. I agree...I don't want medications every day, and I especially don't want to keep taking a narcotic, so I hope it starts slowing down on its own more. I can't wait to me healthy and med free
Posted 4/29/2010 2:54 PM (GMT 0)
Pam,

You've had a tough journey but remember you are very early in recovery. Expect improvements in 6 week increments. Keep a food journal so you can measure transit time and stick to foods that move more slowly. It will get better!

Sue
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