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Addison's Disease Message Board


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Hi. I'm new to this board

So, I'm dealing with some issues similar to yours and those of the 25-year old police officer, Dial. (You're in my thoughts, Dial, and I hope your plight improves. It's appalling how you've been treated by your employer and colleagues.)

I will begin with a brief history; feel free to jump to the end for the data.

I've been struggling for two years now with extreme and chronic fatigue, diffuse body pain, headaches, loss of libido and terribly disrupted sleep. My psychiartrist, who is also a neurologist, said that I was suffering from an exacerbated treatment major resistant depression, with a delayed-sleep phase syndrome and anorexia (because of excessive weight loss, not body image issues); he never suggested that I should pursue other avenues, and my internist was inept, to be candid. The only anti-depressant that helped at all was an MAOi, which gave me a little energy. I also took sleep meds (I've tried them all, including off label), with mixed results -- none of them provided me with refreshed sleep.

About a year ago, I began suffering from labile blood pressure. My pulse would drop to 40, and my blood pressure to 190/100, along with screaming headaches. Conversely, sometimes I would stand up, and drop to the floor, nearly blacking out, with a blood pressure of 95/60. At the time, I was taking a MAO-i, and my psychatrist assumed that I was suffering from the side effects of the medication (even though I had been taking it for nearly a year), which include orthostatic hypotension and near hypertensive crisis (when combined with tyramine). In that year, I lost 20 pounds (all muscle, as I was very fit), and had to discontinue working out and most activity because I lacked eneryg and motivation. Since that time, I have lost another 5 pounds, for a total of 25 pounds, representing about 15% of my body weight.

During one of my near hypertensive crises last year, I raced to a local internist for an EKG and blood work. EKG was normal. Blood work was relatively normal, with exception of impaired white blood cell count and elevated fasting glucose. Dr. said don't sweat it.

I continued to feel crappy, and barely left the house. When I did, I would over do it, and then be bedridden for days. Because of the continued fatigue, I visited a sleep medicine doctor. The sleep study revealed that I have apnea, severely fragmented sleep, and a near-absence of REM and delta (deep, restorative) sleep. (Note, fragmented sleep is typical for people with elevated midnight cortisol.) Because the apnea was relatively mild, the doc wanted to start with some different sleep meds. At the same time, I discontinued the anti-depressants, which didn't seem to be doing much and may have been contributing to some of the sleep fragmentation. I continued to suffer.

Five months ago, my body started to fall apart. I visited the internist, who ordered some tests, and sent me to other specialists regarding my pain. (According to my blood work, my glucose was again elevated.) It ends up, I developed a cervical radiculopathy and ulnar nerve neuropathy, believed to have been caused by several concussive blows to my head from sports-related accidents. I started taking a number of pain meds, one of which has really helped -- Lyrica, which is the first med approved for fibromyalgia. I also received two neck epidurals, and cortisone shots in both of my shoulders for bilateral shoulder impingement syndrome.

Given that my symptoms seemed to mirror those of fibromyalgia, I visited a rheuamotologist, who diagnosed me with fibromyalgia. But he did me no good, other than offering me more pain medicine, along with the dianosis.

After falling ill with bronchitus for the second time in 3 months, and an acute sinusitus for the second time in seven months, collectively causing me to be be bedridden for three weeks, I decided I needed to find a more open minded doctor who would leave no stone unturned. To that end, I sought out and found a preventative/integrative medicine doctor, who is well published, with a specialties in CFS, fibro, nutrition and immunology. I also sought out a second sleep study, and was diagnosed with fairly severe apnea and fragmented sleep, and am now using a CPAP machine, which is a work in process as I acclimate to it.

Recent Medical Data:

The first round of my blood work revealed elevated fasting glucose (but normal HbA1C), low total and free testosterone, and some elevated antibodies reflecting recent infection. Based on this, and my medical history, the doctor opined that he thought I may have CFS, which, for him, is not a diagnosis of exclusion. In turn, he ordered a saliva adrenal stress test, 24 hour urine test, some more blood work, and a stool analysis (which we have not yet received).

Adrenal Stress Test:

Early Morning Cortisol 5 (depressed)
Mid-day Cortisol 6 (low normal)
Afternoon Cortisol 6 (low normal)
Midnight Corisol 8 (highly elevated)

DHEA 6 (normal)

Fasting insulin 4 (low normal)
Post-prandial <3 (extremely depressed)

17-OH Progesterone <15 (depressed)

Total Salivary SIgA 15 (extremely depressed)

Urinalysis/Catecholamines

Volume 3.5 l (excessive)
Creatnine Urine 2.82 (elevated, suggesting kidney impairment)
Norepinephrine 115 (elevated)
Epinephrine 11 (normal)
--Total 126 (elevated)
Dopamine 327 (normal

Blood Work

DHEA-S 146 (low normal)
Fructosamine -- measures glucose for preceding 2-3 weeks -- 299 (elevated)
Prolactin 6.1 (normal)
LH 4.1 (normal)
FSH 1.7 (low normal)

Now, obviously there is something going on with my HPA. The extremely elevated morning cortisol, and low morning cortisol, explains my fragmented sleep and consequential fatigue. And many of the other data bears out my inability to heal.

I am assuming the doctor will want to treat the cortisol and testosterone issue. I don't know what to think about the glucose issue (it seems I may be pre diabetic), other than its being caused by HPA issues, as my diet could not be much better -- high protein, and modest complex carbs and fat, with very little sugar or refined product.

I really want to go into my appointment next week, with an understanding of the implications of these data so that I can ask the necessary questions. Thanks in advance for any guidance you can provide.

Best Regards,
~J
[QUOTE=jinxie1;3266098]
About a year ago, I began suffering from labile blood pressure. My pulse would drop to 40, and my blood pressure to 190/100, along with screaming headaches. Conversely, sometimes I would stand up, and drop to the floor, nearly blacking out, with a blood pressure of 95/60. At the time, I was taking a MAO-i, and my psychatrist assumed that I was suffering from the side effects of the medication (even though I had been taking it for nearly a year), which include orthostatic hypotension and near hypertensive crisis (when combined with tyramine). In that year, I lost 20 pounds (all muscle, as I was very fit), and had to discontinue working out and most activity because I lacked eneryg and motivation. Since that time, I have lost another 5 pounds, for a total of 25 pounds, representing about 15% of my body weight.[/quote]

Have you still had those episodes after you stopped taking the MAOI? Did you have those episodes before taking the MAOI? It sounds very much like pheochromocytoma, an adrenal tumor. BUT MAOI with tyramine can seem very much like that tumor, as your doctor noted. So if you are off the MAOI and still have those symptoms you should be worked up for pheochromocytoma.


Low insulin, elevated glucose, excessive urine volume, elevated creatinine, and especially the elevated norepinephrine all point towards pheochromocytoma. Your doctor must look further into this.
This could also affect your cortisol levels since catecholamines (norepinephrine + epinephrine) are one thing that cause a release of cortisol. If your catecholamines are elevated so will be your cortisol, at some points, and then you might have lowered cortisol at other times.

Interesting is also the depressed 17-OH Progesterone which is a precursor of cortisol. This could be due to a defect in the enzymes that convert the different precursors to cortisol. Another thing that could cause your symptoms. The best person to determine if you have an enzyme problem would be an endocrinologist.

There are a number of other things that could lead to your symptoms and those blood values. But the best thing to do is to work up one thing at a time and use the new data to refine the differential diagnosis.

Personally, I don't understand why a doctor would say CFS is not a diagnosis of exclusion for him. If there are things that we understand and can treat, why would he want to diagnose somebody with CFS for which there is really not much we can do. Anything that can be treated really should be ruled out before diagnosing somebody with CFS since once they have that diagnosis, it's way too easy to blame that for anything, leaving the true cause undiscovered.
[QUOTE]Have you still had those episodes after you stopped taking the MAOI? Did you have those episodes before taking the MAOI? It sounds very much like pheochromocytoma, an adrenal tumor. BUT MAOI with tyramine can seem very much like that tumor, as your doctor noted. So if you are off the MAOI and still have those symptoms you should be worked up for pheochromocytoma.[/QUOTE]

After I dropped the MAOi to a minimal dose (I am off it entirely now), the blood pressure spikes discontinues, and the orthostatic hypotension events became less frequent and severe. Sorry I did not note this before -- I hope your post was predicated on the other symptoms/data as well, as it sounds like it was. Also, I failed to mention profound cognition issues, including short term memory impairment, and difficulty comprehending spoken and written word.

[QUOTE]Low insulin, elevated glucose, excessive urine volume, elevated creatinine, and especially the elevated norepinephrine all point towards pheochromocytoma. Your doctor must look further into this.
This could also affect your cortisol levels since catecholamines (norepinephrine + epinephrine) are one thing that cause a release of cortisol. If your catecholamines are elevated so will be your cortisol, at some points, and then you might have lowered cortisol at other times.[/QUOTE]

As you can see, my free cortisol levels do not vary much (according to the data) and it apprears that the high is sometime in the late evening/early morning. Even assuming that the high is greater than my midnight level, it still probably would not fall within the range expected at early morning. Thus, it's not merely a circadian rhythm issue -- there's certainly some adrenal impairment. Given the elevated norepinephrine, and the DHEA levels, I am surprised the overal cortisol level is not higher. Perhaps my adrenals have been revved for too long. On the positive side, so I extrapolate from some things that I've read, the moderate DHEA levels, combined with the total free corisol, suggest that my adrenals still have some boogie left in them. I hope that is the case.

[QUOTE]Interesting is also the depressed 17-OH Progesterone which is a precursor of cortisol. This could be due to a defect in the enzymes that convert the different precursors to cortisol. Another thing that could cause your symptoms. The best person to determine if you have an enzyme problem would be an endocrinologist.[/QUOTE]

I am seeing a doctor that specializes in these issues, though he is not board certified as an endo.

[QUOTE]Personally, I don't understand why a doctor would say CFS is not a diagnosis of exclusion for him. If there are things that we understand and can treat, why would he want to diagnose somebody with CFS for which there is really not much we can do. Anything that can be treated really should be ruled out before diagnosing somebody with CFS since once they have that diagnosis, it's way too easy to blame that for anything, leaving the true cause undiscovered.[/QUOTE]

I misspoke. I intended to communicate that he does not diagnose CFS by saying, it's not a, b, or c, so it must be CFS. Rather, he evaluates data from blood, urine, saliva, and stool sample, in concert with symptoms and a physical examination, before ever diagnosing CFS, unlike many doctors. Certainly, he will consider other conditions that bear similar symptoms and data values. I've always been somewhat skeptical about CFS, but the symptoms certainly fit in many respects, and this doctor's methodology has more objective medical backing.

Thanks a lot for taking the time to respond.

Best,
~J





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