Debra's Update for 2000

"Welcome To My Update for 2000"

Hi, I'm Debra Harlander. I thought it was important to update my story on my webpage. In September I returned to NIH for a PET scan of my adrenal. The scan did show a questionable area of highlight at the top of my right kidney at the midline. What this means, if anything, is not certain at this date. I will be returning to NIH on 2/6/00, and will be admitted for observation. They are going to try to catch an episode and draw blood at that time.

In November (11/14/99), I drastically changed my diet. My weight has been gradually increasing since I have been sick, and had gone to its highest ever. So, I decided that if no one can really find out what my problem is, then I am at least going to try a change in diet to see if it makes a difference. I completely stopped ingesting any sugar or products containing sugar. I also stopped eating white bread, pasta, etc. In fact, with the exception of cheese, I eat nothing white. I don't drink milk either. Within a week my episodes had calmed down tremendously. And in 8 weeks, I have had only 5-7 episodes, compared to 3-4 times a week. It has not completely eradicated the problem, but I think I have removed a large stimulator in removing the sugar and refined carbohydrates. What do I eat you ask? I eat protein foods such as chicken, fish, beef, pork, eggs, cheese, and I eat plenty of low carb veggies. I will have an occasional fruit, but I find that I have to eat it alone an hour before meals or two to three hours after a meal. I have also lost 17 lbs in 8 weeks.

I am not certain as to why this is working for me. I have more energy, I never feel hungry, I drink lots of water, and overall I feel healthier. When I spoke to my endocrinologist (who is now retired) he told me that one of the possibilities is that I have an over stimulated adrenal, possibly from medullary adrenal hyperplasia. Here is the theory......When I consume carbohydrates in their refined form, such as sugar, bread, pasta, potatoes, etc, my pancreas goes to work producing insulin, and because refined carbs take a lot of insulin to digest, the insulin stimulates my adrenal. Thus, the reason why athletes supposedly get fast energy from carbs. But unlike an athlete who is burning the carbs during physical activity and not raising their blood sugar by the insulin, my body was seeing the major insulin production as a stimulant to my adrenal. And because it is theorized that my adrenal hypersecretes all by itself, it would produce the symptoms. This of course is ALL THEORY and has not been substantiated, but I would not be surprised if the sugar and refined carbs is part of the stimulating factor for me.

However, because my episodes have not been totally eradicated with the diet, my doctors want to find out what is happening to me. I will be admitted to NIH 2/6/2000 for observation. They are going to put an IV line in me and monitor my bp. Should a spike occur they will be able to draw blood exactly at that time to try to figure out exactly what hormone(s) is being oversecreted at that time. They do NOT believe I have a pheochromocytoma, but I do have a nodule in my right adrenal gland. This nodule has not grown in the year since it was discovered, which is very good news, and further substantiates the idea that I do not have pheo. However, it is possible that either the nodule, or something in my sympathetic nervous system is causing my body to produce a hormone or hormones that cause these unexplained episodes of unprovoked rises in my pressure. Another possible theory is that I have a hyper response to the secretion of the "stress" hormones, even at normal levels. My case remains a mystery at this point.

There is an illness called dysautonomia, which means a dysfunction of the autonomic nervous system. Dysaoutonomia can be caused by many illness, including pheo. The autonomic nervous system controls the body functions which we have no control over, such as blood pressure, heart rate, sweating, etc. If something is not right in the autonomic nervous system, it can produce these symptoms as well. I would also encourage you to check out their website  About NDRF. You may be able to find some useful information.

For me, and I am sure others with "unsolved illness", it would be so much easier if it were a pheo, have it removed, then get on with our lives. It is only through my work with NIH and our Pheo Information Group that I am finding out how extremely rare diagnosed pheo really is. So many illnesses from Dysautonomia to Panic/Anxiety disorder can mimic the symptoms of pheo. But it is EXTREMELY important that pheo be completely ruled out in any patient with unexplained hypertension, tachycardia, sweating, headache, etc. I believe that the Plasma Metanephine and Catecholamine test offered by Mayo Clinic has given patients with suspected pheo a great line of defense in determining if a pheo is present. If this test is done correctly and proves to be negative, then there is over a 90% chance that you do not have pheochromocytoma. These results are proving to be more reliable than urine tests currently being used as baseline determinations.

I will try not to take so long in updating my continued saga. Take care everyone.

Love, Debra

 NEWEST UPDATE 2/20/2000

I have just returned from NIH in Bethesda for testing to rule out pheochromocytoma. I would like to add at this point that I was admitted for testing due to the fact that I had a pheochromocytoma in the past as well as the fact that I have confirmed nodules in my remaining adrenal. These two facts as well as the hypertensive episodes prompted the extensive testing.

Unfortunately, what they were expecting to find was not present. My levels of norepinephrine and epinephrine did not rise during the documented episode. I have been almost 100% ruled out for pheochromocytoma at this point, which is good news. Now I have to find a specialist who deals in hypertension which is not pheochromocytoma. My doctors at NIH were outstanding in their effort, however, because their specialty is pheochromocytoma, they will no longer be able to do any further testing at this point.

So the question remains as to what is causing my hypertensive episodes. I have contacted a physician in Baltimore and he has recommended a doctor at the Cleveland Clinic. At this point I think I am going to take a break from all the testing and doctors for a time. The doctor in Baltimore recommended I try an alpha-blocker called Hytrin. I will discuss it with my doctor here in Syracuse and go from there. I will keep you posted as I continue on my journey.

Thanks to everyone who has kept me in their thoughts and prayers. God bless you all.

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