Huge weight gain from steroid treatment. Revision needed?

Hi all,

Forgive the length of this post. My situation is complicated. I'll try to keep it brief and to the point.

Anyway, the past two years have been hell, and that's putting it mildly.

I had my WLS (RNY gastric bypass) in November of 2005. I weighed 250 pounds on a 5' 3" frame. I was 38 years old. After my surgery I lost 125 pounds. I loved it. I was wearing a size 8. I felt lighter, more flexible. I just loved it.

But...

I also began to have symptoms of adrenal insufficiency—my body wasn't putting out enough cortisol. At the time I was on a narcotic patch, and had been since 2004, to control my wicked, vicious migraines. The endocrinologist found that the patch was affecting my pituitary function, which was in turn affecting my adrenal function. Since I was on opiates, the endo said there was nothing to be done...so nothing was done.

Because I was so addicted to narcotics by this time, it was horrible trying to go off them. (I will never judge a heroin addict again!!) I went off the patch in the spring of 2007, but ended up going on Suboxone, which is a narcotic drug that contains a narcotic antagonist and that was developed to treat opiate addiction. This eased up the pituitary problem, but I was still dealing with adrenal insufficiency, just not as severe as before.

Side note here: I believe that the trauma of my WLS was too much for my adrenals to cope with, and that's why I developed adrenal insufficiency before my surgery, even though I'd been on the patch for more than a year previously. Also, some scans were done on my abdomen to look for adrenal tumors, and it was discovered that I had a very large and very strange-looking ovarian cyst. It was scary, my doctor was throwing around the word Cancer a little too much for my comfort. So my ovaries were removed nine months after my WLS (No cancer, thank God!). Here I was losing weight rapidly, struggling nutritionally, and suddenly I'm thrown into menopause (I was only 39 years old at the time.). None of this helped my low-cortisol problem.

In the spring of 2009, I was doing pretty well. Had lots of energy and enjoying being slim. Then one day I started to exhibit all the damn low-cortisol symptoms again! (Plus some other very weird symptoms which I've learned is actually B12 deficiency) I went to my doctor and this time he decided to try a steroid. I was back to my old self within 24 hours. I saw my doctor again, and we put together a plan to help me regain my health and to manage, and hopefully eliminate, my steroid treatment.

Three weeks later I got a call from his office saying my insurance had dropped him. They never told me why. But since he charges about $250 for a half-hour session, I had to find another doctor.

That's when the hell really began.

I had to doctor shop. A very expensive and tiring ordeal. You know, if all you have is the sniffles, it's easy to find a good doctor. But when you have problems like mine: Hypothyroidism, B12 deficiency, calcium and iron absorption issues, migraines, menopause requiring hormone replacement therapy, then adrenal insufficiency to top it all, that's when you find that many doctors are lazy, incompetent, and just plain don't care!

During that time, however, I stayed on the steroid. I was making a lot of my own medical decisions, and I know that I made some terrible decisions, and I feel really stupid about them, but I was doing what I thought I needed. What I mean by that is that I kept increasing my doses of the steroid, believing that some of the symptoms I was suffering from was because of too little cortisol. And the doctors were only too happy to write prescriptions of higher and higher doses. Basically they were telling me that they were sorry, they couldn't help me, but that they would write a prescription to get through the next 30 days until I could find a doctor who could help me.

At one point I was taking 70 mg of the Cortef I was on. I began to develop symptoms of Cushings...which of course includes weight gain. I mean, I had the moon face and everything. No hump on my back, thank heaven. 

In the past two years I've had constant infections, bacterial, fungal and viral, from my immune system being depressed. I've had $10,000 worth of dental work since the steroid interferes with calcium absorption. And I already can't absorb calcium. I'm almost constantly running a fever. I've become house-bound and bed-bound. I'm sick and exhausted and I can't do anything. I'm lucky if I have the strength to take a bath some days.

And I'm FAT again!! I'm almost right back to where I was before!

It turns out, the reason I suddenly got ill in the spring of 2009, was because there was a mixup on my thyroid dose. I was taking double the dose and it was really messing with my cortisol. In addition to all this, I was on Armour thyroid, the only thryroid med that's really worked for me, and it was no longer available. Thus followed a whole nightmare of Let's try this dose, that dose, this formula, that formula, on thyroid med, off thyroid med. This, of course, happened during that time that I had no primary physician. So the problem wasn't managed well and that has contributed to my exhaustion and my huge weight gain. It's only been the past month that my thyroid problem has started to improve. Armour is available again and all is right in my thyroid world! Finally!

Things are looking up. I'm back on Armour again, as I already mentioned, I have a fantastic doctor now, and I'm almost weaned off the steroid. I should be off by the first of April. The problem now is after two years of being on a steroid, my adrenals have sort of gone to sleep. I've read it takes a year for the adrenals to start working again after long-term steroid use. I don't suppose my energy level is going to return for a long time. But my hope is that once I'm off the steroids, my appetite will decrease, and with my thyroid normalized, maybe I'll have a little more energy and will be able to be active again. I'm hoping all that will help me shed the weight I've gained.

But if I can't get rid of this weight, what then?

My weight gain happened because I haven't been active and my appetite level went through the roof! I was constantly hungry and constantly eating. So yeah, it's my fault I've gained weight, but the steroid has messed with my appetite. I've noticed that my appetite has decreased since I've weaned down on the Cortef.  

I'm thinking maybe my pouch has stretched, or maybe the stoma is too large. I've read these problems can be fixed, but if my weight gain has happened because of my overeating, what then? Would I not qualify? And is it dangerous to fix a problem with the pouch or stoma? Will it kill me?

All I know is that I absolutely CANNOT tolerate being this fat. I didn't have my guts rearranged so I could be fat again. And I don't want to be fat and have to suffer nutritional issues like I'm doing now. Something has to be done about this. I have a life I want to live.

Thanks for listening,

Lynda Drake


 

I read your other post first, then came here.......
It sure cannot hurt to ask your doc.  Maybe a doctor supervised diet, where you go in monthly, check in with him about your weight issue, and be weighed, while you are there.  A food journal too?
That way, if you decide later, to really look into having a revision, and your insurance requires doctor supervised (some insurance companies do not require doctor supervised diets, and some do) weight loss, you have done some already, and are that much closer for the insurance requirements.


Just a suggestion
-Jamie