I've suffered from migraines since I was twelve years old. As I've grown older, they got worse. Eventually, they became almost daily and they were debilitating. I was on preventatives, but I was still suffering. I finally went to a pain clinic in mid 2004 and they put me on a narcotic patch that I wore 24/7. It's called Duragesic patch and it's fentanyl, which is a powerful narcotic and hard to wean off of. Of course I didn't learn this fact until much later. My doctor was kind of flippant about weaning off. He told me they would just reduce my dose gradually and everything would be hunk dory. Uh huh.

Also, six months before my weight loss surgery I was diagnosed with hypothyroidism and put on Armour Thyroid. Armour works the best for me. But I'll write about that later.

On November 5, 2005 I had my RNY.

At first it was difficult. I'd just had surgery and felt like I'd been hit by a truck then dragged by a train. I had a real hard time getting my fluids in and taking calcium was a nightmare. I'd take one and be stuffed. I vomited a lot, things got stuck, I was tired and I wondered what the hell had I done to myself.

At the same time I was having trouble with low blood pressure, blacking out and even fainting at times when I stood up, fatigue and weakness. If I felt any stress, I got weak and nauseated.

I did a ton of research on the internet and concluded that the problem was low cortisol. In case you don't know, cortisol is the hormone that the adrenals (which sit right on top of your kidneys) pump out in response to stress. Any stress. From a car accident to spilled milk to constant stress overload from work and/or life in general. When the adrenals don't put out enough cortisol, the body reacts oddly to stress. You get weak and lightheaded, you vomit, and sometimes you can lose consciousness. In fact, not having enough cortisol can kill you. Naturally, I was concerned about myself.

I went to my doctor about this. They said my problem was low blood volume and to increase my salt intake. I did and it helped but I still had problems. I went back to my doctor again and insisted they do a cat scan on my abdomen to see if there was a problem with my adrenals. I had the scan done and what was found was a gigantic, nasty cyst on my left ovary that looked suspicious. All attention was then diverted to that. I feel it was a red herring. The cyst was funky looking, almost like it had walls within it, and the word cancer was being used in connection to it. My doctor insisted it had to come out and I agreed.

I went to my ob/gyn and was scheduled to have surgery in June of 2006, just nine months after my WLS. I was losing weight rapidly, struggling nutritionally and with hydration, having issues with my cortisol, and suddenly I was plunged into surgical menopause.

I got sick in earnest then. I couldn't sleep, had terrible headaches, weakness, fatigue, low blood pressure, blood pressure drops when I stood up, hot flashes, trouble thinking clearly...all kinds of fun stuff. My ob/gyn tried all different kinds of hormone replacement therapy, but I wasn't doing too well with them. He kept telling me it would take one to five years for my body to adjust. Five years??!! That’s actually about how long it’s taken.

Two weeks before my surgery to remove my ovaries my husband was laid off from his job. This was actually a good thing in a way because I was totally bedridden and someone needed to keep things going.

The following December, I went to an endocrinologist (there were only two in my town) and had an ACTH Challenge test done. ACTH is the hormone the pituitary gland puts out to stimulate the adrenals to pump out cortisol. The tests consists of taking a baseline blood sample, administering a synthetic ACTH, then checking the blood every fifteen minutes to see how the adrenals respond. The results were that my adrenals responded fine, but that my pituitary wasn't putting out enough ACTH. I was told it was because I was on a narcotic patch and that there was nothing that could be done. So nothing was done and I just tried to survive.

The following spring (2007) I went off the patch. Our insurance had run out at the first of the year, and my husband hadn't found a job yet. I had to quit the patch, it wasn't helping with my headaches anymore (probably due to hormone issues), it was messing with my pituitary function, and I just plain couldn't pay for them anymore. I went through horrible withdrawal. I swear to god that I will never judge a heroin addict again. When people say you're "kicking" the habit, it means just that...kicking. You lay in bed exhausted because you cannot sleep for days, but you can't lie still. You kick and kick and toss and turn. You just can't stop moving. So you get out of bed but then you're so fatigued you can't stay standing up. You have headaches, diarrhea, you're vomiting all the time — which is what you do with RNY anyway — and you lose any desire to eat or even drink water. I had lost a lot of weight and I just generally felt like there was nothing for my body to draw on to keep itself alive.

Later that spring my husband found a new job. We had to take about a twelve thousand dollar pay cut, and that hurt, but it was a job and we had insurance again.

I ended up going on Suboxone that summer, which is a partial narcotic designed to treat opiate addiction. And let's face it, I was addicted to narcotics. I struggled with that too. It wasn't easy to go off of. I tried several times but would get so sick and had such cravings I'd chicken out and go back on it. I was a bit gun-shy about the horrors of withdrawal by that time.

My adrenal insufficiency problem eased up with the Suboxone, but it was still a problem.

By 2009 I was doing pretty well. I was still on the Suboxone but wasn't having too many low cortisol symptoms. I had lost all my weight, had gotten into a good supplement schedule, I had good energy, and had found a good source and dose of estrogen. My headaches had eased up quite a bit as well. Without my ovaries and the constant up and down of my hormones, my migraines were few and far between and easy to treat. They still are.

Money was tight but I was working at my kid's elementary school and we were doing ok.

Until...

In the spring of 2009, I started having these weird episodes that would come on fast and left me weak, shaking, and sweating. I had a lot of confusion when these strange attacks hit. It was like I would look at something and wouldn't recognize what I was seeing. Like I was disconnected from reality. My tongue would tingle. I would feel faint. It was strange and frightening. No one had any idea what was happening. I did notice, however, that eating something helped.

Of course now I've learned about reactive hypoglycemia and I believe that's what those episodes were. I still have them and I can't figure out what triggers them. They seem so random.

I also began to feel a lot of fatigue and would literally black out when I stood up. My blood pressure began to be low again. To me, it felt as if the low cortisol issue was back. It felt familiar. I went to my PCP and he decided to put me on prednisone to see if it helped. It did. Tremendously.

My doctor was an osteopath and he was very familiar with bio-identical hormones and the treatment of adrenal insufficiency. He put me on Cortef, which is basically hydrocortisone, and we made a plan to help me fix what was wrong and get back off the steroid.

Three weeks later I got a call from my doctor’s office telling me that my insurance had dropped him. I don't know why. The people at his office wouldn't tell me and my insurance wouldn't either. My doctor had been my doctor for more than twelve years and losing him was devastating. It took months to find a doctor who was any good. You know, if all you have to deal with is the occasional sniffles, getting good health care isn't a problem. But when you're like me, and you have hypothyroidism, nutritional issues, hormone replacement therapy needs, chronic migraines, and problems with cortisol production, that's when you begin to see the laziness, greed, lack of caring, and just plain incompetence of some doctors.

I had no medical care to speak of. I was making my own medical decisions and I had no clue about what I was doing. I was going from doctor to doctor and was either being blown off or told that I had too many things for them to deal with, too many perplexing symptoms, and I needed to find someone else. I was asking for higher doses of hydrocortisone, believing that I needed it, and they were writing thirty day prescriptions to help me get through until I could find a doctor to take over my care. At one point I was taking seventy mgs of Cortef! To put this in perspective, my current endo told me the human body normally puts out the equivalent of fifteen to twenty mgs of Cortef each day. I was taking about four times that amount.

I know I was stupid. Please don't judge, ok? I seem to be one of those people who have to learn everything the hard way. Believe me. I learned a lot from all of this and I'm a better person for it.

As I said, I wasn't getting the help I needed. I had began shaking very violently, all the time and I made the decision one day to go to an urgent care facility. I discovered from that visit that there had been a misunderstanding in my thyroid med dosage, and I was taking double the dose I should have been. The thing that really ticks me off is that the doctor I was seeing at the time knew about this, but didn't bother to tell me. If I wasn't in the habit of getting copies of all my labs, I wouldn't have discovered this lapse of theirs. Honestly, this doctor has got to be the worst doctor alive.

I was experiencing thyroid toxicity and I believe that the extra thyroid medication was putting a strain on my adrenals. I had had my ACTH levels looked at again around the time all this started and my levels were still very low. Low normal but right on the bottom. The Suboxone, being an opiate, was still suppressing my ACTH production, just not as severely as the Duragesic patch had been.

As usual, I had no real medical care, so I had to make my own decisions regarding my thyroid medication. I found that if I took even a small dose of my thyroid, I began to shake violently and just get very ill. I really don't know why this was the case, but I decided to go off the thyroid for awhile.

Then, not long after (this was summer of 2009) Armour thyroid wasn't available anymore. Don't know why. I went back to the original endo who diagnosed my pituitary problem and she put me on Synthroid. Well, Synthroid doesn't work well for me. For a long time my dosages were getting tweaked. Every time my dose was changed, we had to wait four to six weeks to see if it helped. My labs just kept coming back abnormal. When I finally found my fabulous current doctor, Dr. David Voss, I switched to a T3/T4 med that was made at a compounding pharmacy, but that didn't work well either. For a long, long time it was this formula, that formula, this dose, that dose, off meds, back on meds. It was nuts.

Also, around summer/fall of 2009 I began to have a lot of trouble with calcium. Apparently, hydrocortisone interferes with vitamin D absorption, which in turn interferes with calcium absorption. With my steroid dose being as high as it was, I had basically developed Cushings and was ravenously hungry all the time. Especially for sugar. I was constantly eating and I was eating a lot of sweets. My teeth began to rot quickly and severely. It took months and thousands of dollars to get this problem under control. I had ten root canals at about the same time. I was in tremendous pain and, because hydrocortisone lowers the immune system, I had infection all throughout my gums. My dentist kept prescribing antibiotic after antibiotic, then I’d always develop a fungal infection afterward.

I was in pain all the time, as I said. The Suboxone only helped so much and I began taking a lot of ibuprofin to deal with it. Which worries me a little. Sometimes I have pain in my stomach after I eat and I worry about ulcers since hydrocortisone thins the skin. I need to get that checked out.

Every time I had a root canal done, my dentist gave me pain medication. Well, the doctor prescribing my Suboxone wasn’t thrilled with this and forced me off the Suboxone. I’m actually quite thankful for that. I’d been trying to go off it for almost a year but, at the first sign of withdrawal, I’d get scared and go back on it. This time, I had no choice and really, the withdrawal wasn’t as bad as I thought it would be and I’ve been opiate-free since June of 2010!

I had to do the hard work of weaning myself off the hydrocortisone and it hasn’t been easy, to put it mildly. Every time I drop a dose I go through the whole gamut of low-cortisol symptoms. And I have to wean slowly or else I get extremely ill. Now that I’m below twenty mgs, It’s been even harder and I’ve had to wean more slowly. I’ve been working on weaning now for about nine months.

As I stated earlier, I was eating all the time when my hydrocortisone dose was so high. I never felt hungry. Not ever. I’d get so hungry that my stomach would ache. And the sugar cravings! Out of control! Combine this with the fact that malabsorption of the RNY slows down at about the two year mark, and the fact that I didn’t have my hypothyroidism under control, and the fact that I was too sick and fatigued to be physically active, and you can see how I gained back all my lost weight.

At of this writing, February 28^th, 2011, I’m taking 2.5 mgs of hydrocortisone and my dental problems have slowed dramatically. I’ve increased my Vitamin D and calcium and it’s helped quite a bit. I still have cavities in every single tooth left, but I can deal with that. My thinning skin is thicker now, my weight gain has stabilized, and I no longer have a moon face. Armour is available again and I’m back on it so my low thyroid is under control. I still have trouble with infections, and I imagine I will continue to do so until I’m entirely off hydrocortisone, which I hope I will be by April 1^st. I’m fatigued all the time but I’m hoping that will ease up once my “sleeping” adrenals begin to work on their own again. Being on hydrocortisone causes the adrenals to shut down.

Once my adrenals start to function again, my next step is to get this weight back off again. I don’t really believe that my RNY is going to do it for me. That’s why I’ve decided to revise to a DS. Another reason I want the DS is to stop this reactive hypoglycemia.