***Endocrinologist Appointment***
So, I saw my endocrinologist today about my adrenal insufficiency. I still have it and apparently I have hypopituitarism as well. He said, "go with the flow for now" regarding no periods since my RNY (almost 6 months ago). I don't want to get pregnant, so he wants to wait and see if that function comes back on its own. I can take hormone replacements to try and get fertile, but that's the last thing I'd ever consider! They will test my other pituitary hormones (like TSH, FH, LH, ADH, etc) to see if there is anything functioning normally with the gland. It looked structurally normal on MRI and the CT of my other glands looked unremarkable back in November. The pituitary just won't "wake up".
He did give me a mineralocorticoid replacement due to the low blood pressure. He said I could load up on sodium more, which I already feel like I eat too much of it-- taste wise. Or, he said I could take Florinef to help regulate my bp better. So, I'll try taking that this weekend.
So... I have a pituitary that doesn't want to function and we don't know if it will ever "come back". Having it malfunction for almost 6 months is a long time he said. He also did say, "You have adrenal insufficiency, no question. You must get a medical alert bracelet because if you get into an accident, the ER must know about this condition." So... gotta wear one of those bracelets now. Any good companies that you know of?
Well, I just wanted to update you guys. They do think this is due to RNY. I just haven't come across this problem in other RNY patients (in person or in research). If you find anything/anyone, will you let me know (PM me, post here, etc)?
He did give me a mineralocorticoid replacement due to the low blood pressure. He said I could load up on sodium more, which I already feel like I eat too much of it-- taste wise. Or, he said I could take Florinef to help regulate my bp better. So, I'll try taking that this weekend.
So... I have a pituitary that doesn't want to function and we don't know if it will ever "come back". Having it malfunction for almost 6 months is a long time he said. He also did say, "You have adrenal insufficiency, no question. You must get a medical alert bracelet because if you get into an accident, the ER must know about this condition." So... gotta wear one of those bracelets now. Any good companies that you know of?
Well, I just wanted to update you guys. They do think this is due to RNY. I just haven't come across this problem in other RNY patients (in person or in research). If you find anything/anyone, will you let me know (PM me, post here, etc)?
~Alyssa
Band to Bypass (Band May 2005 --RNY July 2008)
"Try not. Do, or do not. There is no try." ~Yoda
(What is Interstitial Cystitis)
Evolution of Dance :)
Meet my pouch... The Gremlin:
Alyssa,
Lauren's Hope makes great bracelets - www.laurenshope.com. I have one that I love. What is adrenal insufficiency and how does it manifest itself?
Lauren's Hope makes great bracelets - www.laurenshope.com. I have one that I love. What is adrenal insufficiency and how does it manifest itself?
Phyllis
It's the things that you do, that you don't have to do, that determine the difference when it is too late to do anything about it. Author Unknown
It's the things that you do, that you don't have to do, that determine the difference when it is too late to do anything about it. Author Unknown
I will check out those bracelets! Thanks!
Adrenal Insufficiency... basically your body needs a hormone called cortisol (created by the adrenal glands on the kidneys). For some people, their bodies attack the glands (Addison's Disease: like what JFK had). Others have tumors like Natalie mentioned. Then others, their bodies stop responding to ACTH (the hormone the pituitary makes to stimulate cortisol synthesis/release). Other bodies stop making ACTH but can produce cortisol when stimulated externally with ACTH. My adrenals didn't really respond to ACTH stimulation. My cortisol (at the highest point in the day) was a 1 when they wanted at least 15. With ACTH stimulation, my blood cortisol was only 5. My adrenals just don't want to respond but on top of that, my pituitary hormones are 'asleep'. They dont' know why other than the stress of surgery and the complications that I had post-RNY. I had several surgeries before and had no problems. I did have reactive hypoglycemia most of my adult life, but it is very mild most of the time.
Anyways... I hope this answered your questions!
Adrenal Insufficiency... basically your body needs a hormone called cortisol (created by the adrenal glands on the kidneys). For some people, their bodies attack the glands (Addison's Disease: like what JFK had). Others have tumors like Natalie mentioned. Then others, their bodies stop responding to ACTH (the hormone the pituitary makes to stimulate cortisol synthesis/release). Other bodies stop making ACTH but can produce cortisol when stimulated externally with ACTH. My adrenals didn't really respond to ACTH stimulation. My cortisol (at the highest point in the day) was a 1 when they wanted at least 15. With ACTH stimulation, my blood cortisol was only 5. My adrenals just don't want to respond but on top of that, my pituitary hormones are 'asleep'. They dont' know why other than the stress of surgery and the complications that I had post-RNY. I had several surgeries before and had no problems. I did have reactive hypoglycemia most of my adult life, but it is very mild most of the time.
Anyways... I hope this answered your questions!
~AlyssaBand to Bypass (Band May 2005 --RNY July 2008)
"Try not. Do, or do not. There is no try." ~Yoda
(What is Interstitial Cystitis)
Evolution of Dance :)
Meet my pouch... The Gremlin:
They do think this is due to RNY.
Why would they think it's due to the RNY? Have they explained their thinking?
Plus, how does someone get diagnosed with adrenal insufficiency without being placed on replacement doses of hydrocortisone or another glucocorticosteroid? (And for that matter, how does one get diagnosed with "hypopituitarism" BEFORE measuring all the other pituitary hormones like TSH, HGH, FH/LH, ADH, etc.?)
There are a number of women here with chronic postural hypotension post-WLS who have been treated empirically with low doses of Florinef, but in these cases, the drug is being used for its pharmacological effects on electrolytes and plasma volume, and not as replacement therapy as such.
/Steve
Why would they think it's due to the RNY? Have they explained their thinking?
Plus, how does someone get diagnosed with adrenal insufficiency without being placed on replacement doses of hydrocortisone or another glucocorticosteroid? (And for that matter, how does one get diagnosed with "hypopituitarism" BEFORE measuring all the other pituitary hormones like TSH, HGH, FH/LH, ADH, etc.?)
There are a number of women here with chronic postural hypotension post-WLS who have been treated empirically with low doses of Florinef, but in these cases, the drug is being used for its pharmacological effects on electrolytes and plasma volume, and not as replacement therapy as such.
/Steve
They think that RNY provoked the problem (whether it would have come up down the road or not, they thing RNY, the stress of the surgery and complications caused it). I had normal hormonal levels prior to surgery and I was able to have my period. I stopped my birth control prior to surgery and was able to get my period prior to surgery "naturally". I had surgery and never got it again.
They did test my hormones several times post-RNY. They are looking worse regarding gonadotrophins and my cortisol was absent in the bloodwork. TSH is also "questionable". I am to get another round of bloodwork next week to keep an eye on it.
They found that I had adrenal insufficiency a while ago and my levels are now normal with exogenous cortisol (Cortef). My adrenals are still there, they look fine, but they 1) don't respond to ACTH stimulation and 2) they are barely putting out any cortisol. So yes, I am on replacement doses of Cortef (have been for a while) and the endo didn't want to do replacement HGH, LH, FSH, or other hormones just yet. He wants to see if it will get better over the next 2 months (he said sometimes things "work themselves out" and since I don't care about fertility right now, he said to skip the hormone replacements at this time.
They will keep checking my levels and if they get too low, then we'll discuss replacement for those. For now, they are just impaired not absent (cortisol was extremely low back in October and considered necessary to replace).
My endo said that my aldosterone is not affected by the hypopituitary, but did notice that I had postural hypotension. He said I could add even more salt (gag) or I could try Florinef... so I am going to try Florinef to see if it helps regulate things better. He said my Renin-aldosterone cycle is not abnormal (blood level wise), but I do have hypotension. I have added so much salt to my diet and I still struggle with postural hypotension... so Florinef it is. It's a low dose, so we'll see how I do.
I hope I addressed all your questions. They have been following my hormones for a few months and after 5 1/2 months (will be 6 months on the 24th), they think I will be on Cortef long term or for life and the other hormones, my endo is hoping they improve on their own as I get healtheir. My nutrient panel shows some mild protein deficiency (low albumin) but other values are improving. I'll get the full list from my PCP (the endo only commented on a couple of things today).
They did test my hormones several times post-RNY. They are looking worse regarding gonadotrophins and my cortisol was absent in the bloodwork. TSH is also "questionable". I am to get another round of bloodwork next week to keep an eye on it.
They found that I had adrenal insufficiency a while ago and my levels are now normal with exogenous cortisol (Cortef). My adrenals are still there, they look fine, but they 1) don't respond to ACTH stimulation and 2) they are barely putting out any cortisol. So yes, I am on replacement doses of Cortef (have been for a while) and the endo didn't want to do replacement HGH, LH, FSH, or other hormones just yet. He wants to see if it will get better over the next 2 months (he said sometimes things "work themselves out" and since I don't care about fertility right now, he said to skip the hormone replacements at this time.
They will keep checking my levels and if they get too low, then we'll discuss replacement for those. For now, they are just impaired not absent (cortisol was extremely low back in October and considered necessary to replace).
My endo said that my aldosterone is not affected by the hypopituitary, but did notice that I had postural hypotension. He said I could add even more salt (gag) or I could try Florinef... so I am going to try Florinef to see if it helps regulate things better. He said my Renin-aldosterone cycle is not abnormal (blood level wise), but I do have hypotension. I have added so much salt to my diet and I still struggle with postural hypotension... so Florinef it is. It's a low dose, so we'll see how I do.
I hope I addressed all your questions. They have been following my hormones for a few months and after 5 1/2 months (will be 6 months on the 24th), they think I will be on Cortef long term or for life and the other hormones, my endo is hoping they improve on their own as I get healtheir. My nutrient panel shows some mild protein deficiency (low albumin) but other values are improving. I'll get the full list from my PCP (the endo only commented on a couple of things today).
~AlyssaBand to Bypass (Band May 2005 --RNY July 2008)
"Try not. Do, or do not. There is no try." ~Yoda
(What is Interstitial Cystitis)
Evolution of Dance :)
Meet my pouch... The Gremlin:
They think that RNY provoked the problem (whether it would have come up down the road or not, they thing RNY, the stress of the surgery and complications caused it).
Right. The stress of the surgery and your long, xtra stressful post-op course. Which is only a _little_ more informative than using a term like 'idiopathic'! Thanks for the info; it was simply a matter of what you hadn't shared (not that anyone needs to enter their med records first.) It just sounded strange to me that you weren't being treated more specifically for the AI, and it turns out that you were all along.
/Steve
Right. The stress of the surgery and your long, xtra stressful post-op course. Which is only a _little_ more informative than using a term like 'idiopathic'! Thanks for the info; it was simply a matter of what you hadn't shared (not that anyone needs to enter their med records first.) It just sounded strange to me that you weren't being treated more specifically for the AI, and it turns out that you were all along.
/Steve
Yeah, nothing frustrates a patient more than the term "idiopathic"! Would I have gotten these problems if I never got RNY? Who knows. There were specific problems that arose from the surgery (and malnutrition), so who knows what would have happened had I not gotten the surgery. A car accident or something stressful could have provoked these problems too.
I did mention (a while back) about the AI and hormone replacement... and since it was kind of a long story, I chose to just jump ahead without sharing enough info for someone that knows a thing or two about this stuff. I've been on Cortef twice a day since early October.
I did mention (a while back) about the AI and hormone replacement... and since it was kind of a long story, I chose to just jump ahead without sharing enough info for someone that knows a thing or two about this stuff. I've been on Cortef twice a day since early October.
~AlyssaBand to Bypass (Band May 2005 --RNY July 2008)
"Try not. Do, or do not. There is no try." ~Yoda
(What is Interstitial Cystitis)
Evolution of Dance :)
Meet my pouch... The Gremlin:
Hey there !
My name is Natalie. I am 4 years post op. I too have AI . However, I have no adrenal glands. I had tumors and lost them both.
I can tell you that my Endo has done research with NIH ( National Institutes of Health ) and I can promise you , that your AI was not caused by your RNY. AI is brought on from diseases such as Addisons, or Cushings or the loss of the adrenals or their function.
AI is a condition that I have lived with for 2 years. I have had many complications, to many to list here, but I can tell you that trying to manage my diet and this condition can be tricky.
I would love to talk to you more if you want .
Take care,
Nat
My name is Natalie. I am 4 years post op. I too have AI . However, I have no adrenal glands. I had tumors and lost them both.
I can tell you that my Endo has done research with NIH ( National Institutes of Health ) and I can promise you , that your AI was not caused by your RNY. AI is brought on from diseases such as Addisons, or Cushings or the loss of the adrenals or their function.
AI is a condition that I have lived with for 2 years. I have had many complications, to many to list here, but I can tell you that trying to manage my diet and this condition can be tricky.
I would love to talk to you more if you want .
Take care,
Nat
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Hey Natalie! Nice to meet someone that has AI too. For some reason, my adrenals just won't put out cortisol (blood value was 1 when it should have been in the teens). They did the ACTH stimulation test and my value went up to 5 (I think... I'd have to get the blood results from the hospital). They said it didn't respond and to make things worse, ACTH was low. Now other pituitary hormones are low and they want to monitor them before replacing them because sometimes they bounce back. They felt that RNY did cause these problems... not the surgery components itself... but the stress of it on my body, the complications that I dealt with, etc are what they think caused my endocrine problems. This is just speculation on the endo's part because he can't point out what is causing the problems and after a few months and me doing better RNY wise, my hormones are not improving. He was pretty certain that I'd need cortef for life, but is hoping the pituitary hormones "wake up".
I have to deal with these endo problems, my bladder disease, and RNY... I'm starting to think there are no "safe foods" out there anymore! What works for my bladder is not RNY or weight friendly. I'd be curious to talk some more about AI with you as that is the "worst" of my endocrine problems. I am not under a lot of stress right now, but they anticipate when I start school back up, my cortef levels may need to go up. You can shoot me a PM when you have a chance? I'd really appreciate it!
I have to deal with these endo problems, my bladder disease, and RNY... I'm starting to think there are no "safe foods" out there anymore! What works for my bladder is not RNY or weight friendly. I'd be curious to talk some more about AI with you as that is the "worst" of my endocrine problems. I am not under a lot of stress right now, but they anticipate when I start school back up, my cortef levels may need to go up. You can shoot me a PM when you have a chance? I'd really appreciate it!
~AlyssaBand to Bypass (Band May 2005 --RNY July 2008)
"Try not. Do, or do not. There is no try." ~Yoda
(What is Interstitial Cystitis)
Evolution of Dance :)
Meet my pouch... The Gremlin:
Why do the doctors think the adrenal insufficiency and hypopituitarism is due to your RNY? I haven't seen anything in the literature about general surgery (as opposed to surgery on the pituitary or adrenal glands) being associated with these conditions. Unless you had massive blood loss or infection, or an inflammatory disease that was triggered by the stress of surgery?
Total weight loss: 100 lbs.
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