Problems w/ nutrition, adrenals, thyroid, kidneys, fatigue. Is WLS to blame?
Hi all,
I'll try to be brief but thorough. This may be a bit long, sorry if it is.
I had Roux-en-Y in November, 2005.
Before my surgery I'd been on a narcotic patch (Duragesic patch) for chronic migraines since 2004, and I was diagnosed with hypothyroidism in the spring of 2005 and put on Armour Thyroid.
Before all of that, I had four surgeries from 2001 to late 2003, all of them involving my reproductive organs and resulting surgical complications.
Not to mention tons of stress from a rebellious teenager and money problems.
Almost immediately after my WLS I began showing symptoms of adrenal insufficiency, or low cortisol. I was fatigued all the time, my blood pressure was low and would drop when I stood up, making me blackout. I felt empty and drained, like there was nothing for my body to draw upon for strength and energy.
I had an ACTH challenge test done, which showed a problem with my ACTH production–the hormone that the pituitary gland releases to stimulate the adrenals to produce cortisol–but the doctor said it was because of the narcotic patch and that there was nothing he could do.
He did order a scan of my adrenals, but what they found was a gigantic cyst on one of my ovaries. So all attention was then diverted to that, and in July of 2006, just 8 months after my WLS, I had my ovaries removed.
So, I was losing weight rapidly, struggling nutritionally, struggling to keep myself hydrated, having issues with cortisol, and suddenly I'm plunged into menopause.
Then, stupidly, and because my husband got laid off just 2 weeks before my ovaries were removed (which was actually a blessing in disguise since I couldn't get out of bed and SOMEONE needed to take care of the family), and we had no money or insurance, I stopped the narcotic patch cold-turkey
NOT a good idea.
I was so sick from withdrawals I thought I was going to die. That's not an exaggeration. I will never judge heroin addicts again.
I ended up going on Suboxone (a partial narcotic, developed to treat narcotic addiction) several months later. My adrenal insufficiency symptoms improved after stopping the patch, and so did my ACTH levels, but I still struggled with the low cortisol symptoms. I stayed on Suboxone until June of this year. I am now FINALLY narcotic free!! :D
In spring of 2009 I was finally beginning to feel better, when I began experiencing the same low cortisol symptoms as before. In addition, I began having sudden, and severe, blood sugar crashes, tingling in my tongue and feet, breathlessness, and extreme fatigue–these symptoms turned out to be B12 deficiency. I do B12 injections once a week now. I saw my doctor and he decided to try putting me on hydrocortisone for the low cortisol symptoms, as that had never been tried with me before. We discussed a plan to figure out what was wrong with me, a plan to get off the steroids, and I made a follow up appointment for a month later.
3 weeks after that visit, I got a call from his office saying that my insurance had dropped him. They never did tell me why. Well, he charges $250 for a half-hour visit, so I just couldn't see him anymore.
Then followed months and months, and a lot of money, of doctor shopping. I tell you, if all you have to deal with are occasional sniffles, it's easy to find a good doctor. But when you have multiple health issues, that's when you start to see the laziness, greed, and just plain incompetency of a lot of doctors! I finally found a good doctor a year ago.
During all this time I stayed on the steroids. That was a huge mistake, but in my defense, I didn't know if I needed them or not, and I had no one to help me manage my health and my medications. I was having to make my own medical decisions.
Well, the steroids began to wreak havoc on my teeth (they interfere with calcium absorption) and my immune system. I seem to get every cold that comes along. My teeth got to the point where I required $10,000 worth of repair!!. I don't have that kind of money, so some of my teeth are going to have to wait. I did, however, have eight root canals, two extractions, and three cavities filled.
I was constantly in pain, and constantly running a fever. I was taking a lot of Ibuprofin during this time, another mistake. Now, possibly because of all my Ibuprofin use, we just don't know at this point, my kidneys aren't functioning as they should, and I've developed iron anemia because of it (For those who don't know, the kidneys produce a hormone that stimulates the bone marrow to produce red blood cells.).
It turns out that the reason I got sick in the spring of 2009, was because there was a mixup on my thyroid dose, and I was taking double what I should have been. I didn't get that figured out until months later though. For some reason, the extra thyroid was straining my adrenals, that's why I was having the low cortisol symptoms.
Now, the way things stand, I've been weaning off the steroids, and it's kicking my butt! And after the discovery of my too-high thyroid dose, for months it was off my thyroid med, on again, this dose, that dose...there is still a problem with my thyroid; my T4 levels keep coming back abnormally low, despite all the changes in my meds. My doctor is worried that the problem may be with my pituitary function. Well, I'm not on opiates anymore, so if there is a problem, it's a geniune problem, not drug related. My kidneys aren't functioning, I have iron anemia, my muscles twitch all the time, I've had weird–and painful–muscles spasms in my stomach muscles (like charlie horses), because of infections in my gums I've been on a lot of antibiotics, which has led to fungal infections in my mouth and outer ears, my heart is always beating around 120 beats per minute, and I'm so tired I can't get out of bed most of the time!
In short, I have nutritional issues, endocrine issues, kidney issues, and dental issues.
I don't know how much any of this is related to my gastric bypass. It's probably partially related, and the rest is other stuff, medicines and their side effects, and complications from everything. I don't know. It just seems like I didn't start getting really ill until right after my WLS.
Does anyone have any advice for me? Or experiences that might help me figure out what's the problem? I'm seeing a great endocrinologist on Tuesday, November 2nd, and I'm thinking about seeing a cardiologist as well, since my heart is always going too fast. That, however, might be because of iron anemia. And I need to find out if I have kidney disease; if I do, then I'll need the injections of the hormone the kidneys are supposed to produce.
Oh, and I've gained 70 pounds thanks to the steroids and my thyroid problem. That just ****** me off, excuse my language. I lost 125 pounds but gained 70. All my gorgeous size 8 clothes are useless now!
Sorry this is so long. I'm doing everything I can, and talking to everyone I can, to get control of my health.
Thanks, Lynda
I'll try to be brief but thorough. This may be a bit long, sorry if it is.
I had Roux-en-Y in November, 2005.
Before my surgery I'd been on a narcotic patch (Duragesic patch) for chronic migraines since 2004, and I was diagnosed with hypothyroidism in the spring of 2005 and put on Armour Thyroid.
Before all of that, I had four surgeries from 2001 to late 2003, all of them involving my reproductive organs and resulting surgical complications.
Not to mention tons of stress from a rebellious teenager and money problems.
Almost immediately after my WLS I began showing symptoms of adrenal insufficiency, or low cortisol. I was fatigued all the time, my blood pressure was low and would drop when I stood up, making me blackout. I felt empty and drained, like there was nothing for my body to draw upon for strength and energy.
I had an ACTH challenge test done, which showed a problem with my ACTH production–the hormone that the pituitary gland releases to stimulate the adrenals to produce cortisol–but the doctor said it was because of the narcotic patch and that there was nothing he could do.
He did order a scan of my adrenals, but what they found was a gigantic cyst on one of my ovaries. So all attention was then diverted to that, and in July of 2006, just 8 months after my WLS, I had my ovaries removed.
So, I was losing weight rapidly, struggling nutritionally, struggling to keep myself hydrated, having issues with cortisol, and suddenly I'm plunged into menopause.
Then, stupidly, and because my husband got laid off just 2 weeks before my ovaries were removed (which was actually a blessing in disguise since I couldn't get out of bed and SOMEONE needed to take care of the family), and we had no money or insurance, I stopped the narcotic patch cold-turkey
NOT a good idea.
I was so sick from withdrawals I thought I was going to die. That's not an exaggeration. I will never judge heroin addicts again.
I ended up going on Suboxone (a partial narcotic, developed to treat narcotic addiction) several months later. My adrenal insufficiency symptoms improved after stopping the patch, and so did my ACTH levels, but I still struggled with the low cortisol symptoms. I stayed on Suboxone until June of this year. I am now FINALLY narcotic free!! :D
In spring of 2009 I was finally beginning to feel better, when I began experiencing the same low cortisol symptoms as before. In addition, I began having sudden, and severe, blood sugar crashes, tingling in my tongue and feet, breathlessness, and extreme fatigue–these symptoms turned out to be B12 deficiency. I do B12 injections once a week now. I saw my doctor and he decided to try putting me on hydrocortisone for the low cortisol symptoms, as that had never been tried with me before. We discussed a plan to figure out what was wrong with me, a plan to get off the steroids, and I made a follow up appointment for a month later.
3 weeks after that visit, I got a call from his office saying that my insurance had dropped him. They never did tell me why. Well, he charges $250 for a half-hour visit, so I just couldn't see him anymore.
Then followed months and months, and a lot of money, of doctor shopping. I tell you, if all you have to deal with are occasional sniffles, it's easy to find a good doctor. But when you have multiple health issues, that's when you start to see the laziness, greed, and just plain incompetency of a lot of doctors! I finally found a good doctor a year ago.
During all this time I stayed on the steroids. That was a huge mistake, but in my defense, I didn't know if I needed them or not, and I had no one to help me manage my health and my medications. I was having to make my own medical decisions.
Well, the steroids began to wreak havoc on my teeth (they interfere with calcium absorption) and my immune system. I seem to get every cold that comes along. My teeth got to the point where I required $10,000 worth of repair!!. I don't have that kind of money, so some of my teeth are going to have to wait. I did, however, have eight root canals, two extractions, and three cavities filled.
I was constantly in pain, and constantly running a fever. I was taking a lot of Ibuprofin during this time, another mistake. Now, possibly because of all my Ibuprofin use, we just don't know at this point, my kidneys aren't functioning as they should, and I've developed iron anemia because of it (For those who don't know, the kidneys produce a hormone that stimulates the bone marrow to produce red blood cells.).
It turns out that the reason I got sick in the spring of 2009, was because there was a mixup on my thyroid dose, and I was taking double what I should have been. I didn't get that figured out until months later though. For some reason, the extra thyroid was straining my adrenals, that's why I was having the low cortisol symptoms.
Now, the way things stand, I've been weaning off the steroids, and it's kicking my butt! And after the discovery of my too-high thyroid dose, for months it was off my thyroid med, on again, this dose, that dose...there is still a problem with my thyroid; my T4 levels keep coming back abnormally low, despite all the changes in my meds. My doctor is worried that the problem may be with my pituitary function. Well, I'm not on opiates anymore, so if there is a problem, it's a geniune problem, not drug related. My kidneys aren't functioning, I have iron anemia, my muscles twitch all the time, I've had weird–and painful–muscles spasms in my stomach muscles (like charlie horses), because of infections in my gums I've been on a lot of antibiotics, which has led to fungal infections in my mouth and outer ears, my heart is always beating around 120 beats per minute, and I'm so tired I can't get out of bed most of the time!
In short, I have nutritional issues, endocrine issues, kidney issues, and dental issues.
I don't know how much any of this is related to my gastric bypass. It's probably partially related, and the rest is other stuff, medicines and their side effects, and complications from everything. I don't know. It just seems like I didn't start getting really ill until right after my WLS.
Does anyone have any advice for me? Or experiences that might help me figure out what's the problem? I'm seeing a great endocrinologist on Tuesday, November 2nd, and I'm thinking about seeing a cardiologist as well, since my heart is always going too fast. That, however, might be because of iron anemia. And I need to find out if I have kidney disease; if I do, then I'll need the injections of the hormone the kidneys are supposed to produce.
Oh, and I've gained 70 pounds thanks to the steroids and my thyroid problem. That just ****** me off, excuse my language. I lost 125 pounds but gained 70. All my gorgeous size 8 clothes are useless now!
Sorry this is so long. I'm doing everything I can, and talking to everyone I can, to get control of my health.
Thanks, Lynda
First Surgery Date: November 5, 2005
Surgery Type: RNY--Proximal
Height: 5' 3"
Beginning Weight: 250 lbs.
Lowest Weight: 125 lbs.
Current Weight: 230 lbs. Seeking Revision to DS
Here's how things stand, for those of you interested.
I saw a cardiologist and there's nothing wrong with my heart that they can find, it just beats too fast. My doctor thinks it's from the hydrocortisone (steroid) that I'm on.
I'm off the narcotic, so there shouldn't be a problem with my pituitary function anymore. And I'm successfully weaning off the hydrocortisone. It's slow going though, and difficult. The weaning process has left me very weak and exhausted most of the time. Once I'm off it, however, my adrenals will start working properly again and I should be fine. It might take a year for this to happen though.
My kidneys are fine. The doctor thinks they were having trouble because I was taking so much ibuprofin due to dental pain and fevers.
As I'm weaning off the steroid, my dental decay has slowed dramatically.
I can deal with the nutritional issues and all the weird twitches and abdominal charley-horses. I guess that's just part of the fun of WLS. I just have to stay on top of my nutritional needs, which can be a pain in the butt. I feel like all I do is swallow vitamins some days. :/
But my biggest issue is that I've gained back almost all of my lost weight. That angers me. I know it's because of the steroid and not having my low thyroid problem under control. Which, by the way, is finally under control. I'm hoping that once I'm off the steroid I'll be able to lose some of this weight that I've gained. I'm not sure of this though, so I'm going to see my surgeon. Maybe I may have to have a revision. I don't know.
Lynda
I saw a cardiologist and there's nothing wrong with my heart that they can find, it just beats too fast. My doctor thinks it's from the hydrocortisone (steroid) that I'm on.
I'm off the narcotic, so there shouldn't be a problem with my pituitary function anymore. And I'm successfully weaning off the hydrocortisone. It's slow going though, and difficult. The weaning process has left me very weak and exhausted most of the time. Once I'm off it, however, my adrenals will start working properly again and I should be fine. It might take a year for this to happen though.
My kidneys are fine. The doctor thinks they were having trouble because I was taking so much ibuprofin due to dental pain and fevers.
As I'm weaning off the steroid, my dental decay has slowed dramatically.
I can deal with the nutritional issues and all the weird twitches and abdominal charley-horses. I guess that's just part of the fun of WLS. I just have to stay on top of my nutritional needs, which can be a pain in the butt. I feel like all I do is swallow vitamins some days. :/
But my biggest issue is that I've gained back almost all of my lost weight. That angers me. I know it's because of the steroid and not having my low thyroid problem under control. Which, by the way, is finally under control. I'm hoping that once I'm off the steroid I'll be able to lose some of this weight that I've gained. I'm not sure of this though, so I'm going to see my surgeon. Maybe I may have to have a revision. I don't know.
Lynda
First Surgery Date: November 5, 2005
Surgery Type: RNY--Proximal
Height: 5' 3"
Beginning Weight: 250 lbs.
Lowest Weight: 125 lbs.
Current Weight: 230 lbs. Seeking Revision to DS
Also, as of today, I'm seriously thinking of doing a revision to DS. It doesn't sound like I can get my old RNY to do for me what it did in the past anymore. Will keep everyone posted. If you want me to.
Lynda
Lynda
First Surgery Date: November 5, 2005
Surgery Type: RNY--Proximal
Height: 5' 3"
Beginning Weight: 250 lbs.
Lowest Weight: 125 lbs.
Current Weight: 230 lbs. Seeking Revision to DS
I am just reading your posts for the first time. I am glad that you are seeing a good Endocrinologist. I will tell you that I wear the Duragesic patch and have for years and it has never affected me. I am hypothyroid, hypopituitary but I had these before I went on the patch. Many years ago I had trouble with my adrenals and they thought I had Addisons but out of the blue, then my cortisol went high and then it normalized and has been normal since. I still get it checked every 6 months to make sure it is okay.
Keeping our thyroid levels maintained post op is a very tough thing to do. You need to get your levels checked every 3 months - TSH, T3 and T4 levels. Has your Endocrinologist checked you for Hypopituitary? You would need to have your growth hormone, IGF-1, prolactin, FSH, LH and a couple of other hormones that I can't remember right now. If you are in fact hypopituitary, it makes monitoring and treating your thyroid that much more difficult since someone with hypopituitary has difficulty making TSH, so your levels will be much lower than the average person - this isn't the case with T3 or T4, so these numbers are very important to checked too. It is okay for your TSH to be on the low side in this case but you don't want it even close to the top of the range,
Being on the steroids all that time did in fact help your adrenals for that period when you needed it - when your cortisol was so low and the cortrosyn stimulation test was positive. This could also be the reason for the kidney problems. Thankfully that has improved but I have to say, I have never heard of duragesic patches causes that.
Keeping our thyroid levels maintained post op is a very tough thing to do. You need to get your levels checked every 3 months - TSH, T3 and T4 levels. Has your Endocrinologist checked you for Hypopituitary? You would need to have your growth hormone, IGF-1, prolactin, FSH, LH and a couple of other hormones that I can't remember right now. If you are in fact hypopituitary, it makes monitoring and treating your thyroid that much more difficult since someone with hypopituitary has difficulty making TSH, so your levels will be much lower than the average person - this isn't the case with T3 or T4, so these numbers are very important to checked too. It is okay for your TSH to be on the low side in this case but you don't want it even close to the top of the range,
Being on the steroids all that time did in fact help your adrenals for that period when you needed it - when your cortisol was so low and the cortrosyn stimulation test was positive. This could also be the reason for the kidney problems. Thankfully that has improved but I have to say, I have never heard of duragesic patches causes that.
OMG!!!! This sounds just like ME!!!!! I cannot believe it! I have seen and endocrinologist, a pulmonologist and a cardiologist. No one can figure me out. I get short of breath (on doc said asthma, my pulmonologist said no), my heart beats fast and the cardiologist said I have mitral valve regurgitation which is normal for my age and shouldn't be causing my issues. I saw an endocrinologist and she ran all sorts of tests which didn't show anything abnormal except my blood sugar was extremely low which it has been doing for a long long time! I have reactive hypogycemia and once it dropped to 25. I have asked my doctor why I am so fatiued all the time and he ran a adrenal function test on me which was again normal. I am frustrated. I have put back on 50 pounds myself. Every joint hurts and they say I have fibromyalgia. If I don't get a nap in during my day its awful. I take Tramadol since RNY patients should not take ibuprofin at all. Its an anti-imflammatory which is safer to take and its not narcotic. I swear by this stuff. In fact when I first take it, it boosts my energy allowing me to do stuff around the house. Anyway, I don't have thyroid issues that I know of. They ran a TSH and it was normal. I think sometimes I hope it doesn't come out normal so I will get an answer. OH and this endo, I told her about my surgery and she still made me do a glucose tolerance test!!!! I will NEVER do that again! WTH? I swear I was so sick, I wanted to die! Thank God I won't see her again!!! She left the practice but now they have some 70yr old guy in her place. I haven't gone to him. Unless he is up and up on RNY's forget it! Warning don't ever do that. Stupid!!!!
Let me know if you get a revision! I wish to God I could have had the DS instead. I heard it was a better solution to those with PCOS like I have.
Paula
Let me know if you get a revision! I wish to God I could have had the DS instead. I heard it was a better solution to those with PCOS like I have.
Paula
I had many of the same problems you speak of. I had my rny REVERSED 3.5 years after the surgery. its been 2.5 years since my reversal and its the BEST thing I could have done.
I still suffer with some residual peripheral neuropathy and dental issues but for the most part I am MUCH better since the takedown. Granted I had to fly from colorado where I live to new york to get the reversal but it was WELL worth it
Grace
I still suffer with some residual peripheral neuropathy and dental issues but for the most part I am MUCH better since the takedown. Granted I had to fly from colorado where I live to new york to get the reversal but it was WELL worth it
Grace
Yea it's a constant battle after wls previous issues or not..I'm going through a mess of things and to top it all off I had heart attack # 2 ,3 weeks ago. I thought how could this happen after 110 weight loss I eat 90 % healthy, and I have maintained my weight loss. Now i have 8 stents and open heart surgery and wls. Doctors discovered thyroid and lung tumors now. guess some of us just have never ending health issues..Also going through menopause myself too.
I told my surgeons nurse i wanted a reversal Rny, she said it just causes even more issues with scar tissues. and the rearranging of your insides..I was having problems with the scar tissue from all the stents i had put in me. causing me to limp....I would work with what you have and go back to the beginning of your wls..Use it..I do...Hugs to you stay strong..PeaceV Wendy
7stents (2003)...Heart Attack(2004)...Open Heart (2004)....Wls (2007)...Heart attack 2012...1 stent (2012)...Heart Attack (2013)...Heart Attack (2013)...1 stent(2013)
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