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01/11/2010 05:57 PM

Saw the Endo - kind of iffy on it....

LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

Ok - first, he did not give me more prednisone. He said there is too much concern with osteoporosis and such, and although I could split my dose in half, after I mentioned I read it was only 10-12 hr pill, it really wasn't necessary. He also doesn't like doing HC. HOWEVER, he is extremely concerned about the fatigue. So...

* He is running the thyroid tests again - very concerned about hypothryroid.

* He is scheduling an MRI of my pituitary

* He is putting me on wellbutrin, for depression (who wouldn't be by now?) and hopefully an energy boost - also, he agrees with me that the Bipolar II diagnosis was incorrect

* He is running another blood test for Celiac

* He is testing for possible prolactin (sp?) problems, since I am having headaches lately (due to Mirena IUD, he can't tell much since he can't judge my cycle)

* He agreed to give me B-12 shots, so I can practice injecting myself, and maybe they will help with the fatigue. I'll have one a week, & since they didn't have any at the office, my friend's mom, a nurse, is going to teach me how to do it - this way my husband can practice too.

* He is weaning me off the beta-blockers, which I expected

* He is writing the letter I asked him to

* I had a flash of brilliance, and he agreed it was probably true: if my anxiety has been caused by Addison's, and it is now being treated, then the Valium I take for anxiety could now be making me tired (instead of just leveling me out). If I feel comfortable, he wants me to try to wean down on those.

* If I can handle it, try just a few minutes a day or every other day of cardio - I may try walking in place at home first, then join my husband's gym a little later down the road.

I plan to wait and see what all the tests say, then how I feel. I have an appointment in four weeks unless a test result comes back off, in which case I see him immediately. If I don't have any relief of the symptoms by then, or any new developments, I'll be armed and dangerous with research about other meds.

Any thoughts are appreciated!

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01/11/2010 06:03 PM
gwebb
gwebbPosts: 400
Member

I don't have much experience, as I'm yet to see an Endo, but it does sound like your endo is trying.

How do you feel about it all now? Do you think you're hypothyroid?

Hope you at least are feeling a bit better.

Gail


01/11/2010 06:15 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

I don't know what to think. I thought he would up the prednisone dose with no problem, but that's not going to happen. That was my major disappointment. I've lost a pound in two weeks, and that includes barely functioning, so I'm not burning any calories. He said I could still be hypo, with my GI problems/nausea/loss of appetite preventing the typical weight gain. I thought he tested for this a month ago, but he said things could change.

He wants to check for a pit tumor. I'm trying not to think about that. He said not to worry, if there is something, they can take care of it. Okay, dude, my brain we're talking about! But he's got such a great bedside manner, and that's how he said it. (Not dismissively.)

Who knows? I'm willing to try all this other stuff first. But the GI problems are NOT making me happy. I had a month off, and now I'm dealing with it again. Five freaking years...and he knows I've had Celiac tests and biopsies two years ago that were negative, but again, he said things can change.

I get the distinct impression that AI patients are walking time bombs for 18 other auto-immune disorders. Lovely.


01/11/2010 06:17 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

Oh, and osteoporosis runs in my family, and my size/race/sex make me high-risk anyway...I am starting calcium + vit D now.

01/11/2010 06:21 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Hi Cynthia

One note before I reread and maybe make more..

Insufficient cortisol will make you hypothyroid. The "system" sees the lack of cortisol and ramps down thyroid action to avoid crisis. To investigate this problem you need far more than the "gold standard" of a TSH test. TSH is only valid if the fault is primary or in the thyroid gland itself. You also need FT4 and FT3 measured as the "problem" will be control system related (pituitary and hypothalamus). (I am hypothyroid but my TSH is more or less okay. When you examine T4 and T3 though it was moire evident I had a problem)

Thryoid and adrenals are very inter-related.

Bob


01/11/2010 06:49 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Okay some more..

My Rheumy put me on Actonel. I tolerate it okay. My original endo didnt like the idea since I am only just osteopenic. With all the other drugs though I wouldnt blame you for not wanting to start another!

Flashes of brilliance means at least your mind is mostly okay! Well, when you had the flash that is! (ie your cortisol level was optimal or excessive when the flash happened! <grin>Wink

If you are on a celiac diet and successful at it the test will be negative. I hear too that false positives happen.

I remember your original DX wasnt really clear as to whether it was primary or secondary. Good that a look of the pit hormones is happening. Prolactin is US spelling, Prolactyn for Oz and UK. We know what you mean though! I wonder if it is worth doing the other main hormones as well (eg FSH/LH/GH) My LH has fallen through the floor. (That has implications for me being a male!)

I was pretty anxious before my DX! <grin> It also didnt help when my cardio said I'd need a pacemaker in a few weeks or else.... (I choose to be pragmatic and tell doctors that. My cardio problems have no relationship with my AI problems except that they co-habit the same body!)

My first exercising (since leaving FT work) will be raking leaves in the front yard, so I am close to bed if I need to fall into it!

Not much useful, sorry!

Bob


01/11/2010 06:52 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

Does that mean he probably ran the regular test last month, but is running the detailed tests now?

And does that mean if I were on a higher dose of prednisone, this could be avoided, or does that mean my insufficient cortisol over who-knows-how-many-years would have caused the hypothyroid?

Charlie Brown needs chapter 3. Smile


01/11/2010 06:57 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

My cardio problems almost have to be related. Otherwise, I have unexplained tachycardia...and with low bp. That problem does not run in my family. High bp and heart-attacks do. And I'm only 30, dangit! I have probably had the problem for some time, but it was diagnosed (because it was inescapably horrid) when I was pregnant, at 25.

The tachycardia is interesting, at least. Keeps things from getting too boring!


01/11/2010 07:43 PM
cathd
cathdPosts: 60
Member

so we seem to have quite a bit in common... I was being treated for a Panic Disorder for about 20 years, even though it didn't fit the "typical" presentation. The psychiatrist I found since I've been diagnosed with secondary AI said he strongly suspects that the panic attacks were rooted in the adrenal issues from early on. Still has me on an antidepressant until we work our way through the endocrine maze, but it has been SUCH a relief. I just kept telling people that the only thing I was anxious about was the attacks themselves! But you do what you have to to live your life.

I know it seems bleak right now, but after being on my couch for three months last summer and barely functioning for another 3, I a seeing glimmers of energy, and can CHOOSE to change my meds in response to my needs. I feel like a giant chemical experiment, but am beginning to feel hopeful again.

Your turn next?


01/11/2010 09:37 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1817
Group Leader

I hope so! My only issue is not being able to adjust my meds, unless it is something drastic - and I have to go through my endo to do it. I am still pretty upset he wouldn't give me a higher dose. Either my hopes were just too pinned on that, or maybe he knows something I don't?

I'm hoping to be off the couch soon. All the other things we are doing should help, I hope. I just don't know what else there is, outside of adjusting the prednisone dose. But I have to set that aside for now and go with what I have. I do think, deep down, that if all these tests come back okay, and none of these other options work, my endo will reconsider, just because he seems so determined to "fix me". That's the impression I have of him, anyway.

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