Re: Undiagnosed food metabolism condition (long)
Re: Undiagnosed food metabolism condition (long)
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Posted by joan
on January 05, 2000 at 09:59:47:
In Reply to: Re: Undiagnosed food metabolism condition (long) posted by Harry on December 27, 1999 at 10:18:19:
: : : Warning: this is a *very* long post. I'm desperate for some assistance, so I will be as specific as possible.
: : : Basically, I've been to several specialists already, but I'm looking for someone who specializes in difficult to diagnose/treat conditions.
: : : Before I begin, I'll give everyone a little background information: I'm 25 years old, married and have two children.
: : : In January 1998, I was hospitalized due to an atrial fibrillation and a tachycardia. It came on out of the blue. Prior to this incident I never had a problem with my metabolism or my heart. I was lying on my side and all of a sudden, my heart jumped out of rhythm. Well, needless to say, I was a little concerned. I went home and told my wife what had happened. We rechecked my heart rate, and it was 145 bpm. We then decided to go to the emergency room. While there my heart went completely a-fib and was taching at nearly 190 bpm. I was there for the next four days while they checked everything concerning my heart. In any case, they found nothing substantially wrong after several EKGs, an echocardigram and a stress test. They sent me home on metaprolol, a beta-blocker.
: : : Well, the next week was crazy. I felt *so* sick after taking the metaprolol--almost psychotic. It was unlike anything I'd ever felt before. I called my sister who has reactive hypoglycemia, and she advised me to try snacking on high quality protein snacks every couple of hours. However, after a few weeks I wasn't getting better.
: : : (Note: my sister's reactive hypoglycemia also came on after an initial tachycardic episode. She, however, improved on a diet not restricting carbohydrate intake, but simply adding protein-oriented snacks. She also doesn't deal with any mental symptoms like I do--just extreme fatigue and a tachycardic heartbeat.)
: : : I then went to an endocrinologist here in northern New Jersey. I took the GTT and was then diagnosed with reactive hypoglycemia. My numbers were as follows: F-83, 0.5-136, 1-158, 2-96, 3-51, 4-74, 5-73. I also had a high fasting cortisol at 29.7mcg/dl and an initial weird c-peptide reading of 3.62 (subsequent testing revealed that that level could have been an error, although I doubt it.)
: : : In any case the endocrinologist pretty much said, "Follow the diet from the hospital." That consisted of three moderately sized meals with three protein-oriented snacks. I followed the diet rigidly, but over time found myself more and more jittery, panicky and paranoid. Emotionally and physically, I was a completely different person. My mother then located _The Low Sugar Handbook_ by Ed and Pat Krimmel. I read through it and was so relieved that I wasn't the only one who felt like they were going out of their mind. I then heartily followed the regimen. However, again, after about six months of following the program strictly, I found myself just as bad off. I was completely unable to concentrate, crabby, spacey, every morning I woke up exhausted, unable to cope with things I used to have absolutely no problem with, an arrhythmia, et al.
: : : Well, in November of 1998, I finally went off a regular hyopglycemic diet and went back to three square meals a day. I also began eating fast acting carbs again. I actually started to feel slightly better. For about six months, I kept this up. I had more energy, although I was still dealing with incredibly sore eye sockets about forty-five minutes after I'd eat, some panic here and there and also irrational thoughts sometimes. I was able to cope to a degree though, so I stuck with it. Finally, in May of 1999 something happened. My luck ran out. One day I had lunch at about 12:30 pm and then, at about 3:00 pm I started to feel a dip. My heart was racing (which I was used to) and I was so panicky, I knew I had to eat. I then ate, but it didn't really fix the "sick" feeling this time. From that day on the adrenaline/panic has never ceased. Serious depression has also set in because there has been almost no relief or rhyme or reason to the condition. I have tried *every* conceivable thing dietwise and nutritionally to change the situation. I still eat a high protein, low carb diet, but unfortunately it has not solved the problem.
: : : In the past six months I have gone to several doctors (three local endocrionlogists, a university neuroendocrinologist and a nutritional MD) for various tests. Through the neuroendocrinologist, who is from Cornell Medical Center, we found some definite disregulation of cortisol as well as irregular cortisol synthesis: my OH-pregnenalone and OH-progesterone levels were way too high. Currently, the neuroendocrinologist has me on 0.5 mg of dexamethasone per day, and it has helped on certain days, but not *consistently*. He wants to shut my adrenals down to see if the overproduction of the other neurosteroids could be contributing to the problem. In any case he does feel my adrenals are part of the problem.
: : : The nutritritional MD I saw had me on every supplement imagineable, but they really haven't helped, and my body even seems to react negatively to taking too much of them.
: : : I've also tried psychotropic medication: Serzone, Zoloft, Elavil, Effexor, Celexa. Serzone was the only one I could tolerate enough to actually complete a trial for, and it too aggravated the condition and actually worsened the depression. I'm not looking forward to trying any other psychotropic medications considering how the other ones affected me. Besides, if I'm dealing with an endocrine disorder related so intrinsically to food metabolism, I'm not sure antidepressants are going to do the trick anyway.
: : : I'm sorry to be so long-winded, but I wanted to relate the whole story. I'm wondering if anyone out there has experienced a similar thing, or if anyone has heard of a situation like this where no matter what one tries dietwise, it doesn't fix the endocrinological problem. And, the reason I'm so desperate is because I've felt so sick for the past two years--I just feel so physically and mentally exhausted.
: : : My wife and I *know* something is chemically/hormonally wrong, and we just need some clear direction. Does anyone know of any endocrinologists/other specialists who are really expert at dealing with *incredibly* difficult endocrinological cases? Does anyone have any treatment or medication suggestions?
: : : Thanks to all for reading.
: : HI J.D.Williams,
: : I read your posting and found it very interesting.You have figured out by now that there are things that can not be diagnosed even by very good doctors.You are probably frustrated, angry, depressed, disappointed and as you said physically and mentally exhausted. Let me give you some suggestions.You may not ever find any better MD's than you have been to unless you go to Doctors at a Medical School.
: : You need to accept some responsibility for your own health.You probably don't eat right but who does.No illness comes out of the blue. Illnesses have causes we just don't know them YET. SO, lets treat your sypmtoms.Hypoglycemia --as you know your pancreas is not functioning properly and normal metabolism(carbo's) is next to impossible.YOU have to find out what you do metabolise.Get a Blood Tester for Glucose testing and find out.Get some books and find out the nutrients that are important and you need.I have found out that you can't subcontract this out to an MD.I have found a good book that may change your life is,"EAT RIGHT for YOUR TYPE" by Dr Peter D'Adamo. It outlines the way to eat for your blood type.It's not only hard to read,its more difficult to apply.You also need to find out supplements you need to stabilize blood sugar, essential for optimal insulin activity, proper digestion, improve energy and circulation.There are also some herbs you will need to support and nourish your adrenal glands, liver and pancreas.ELiminate alcohol,processed foods,soft drinks,sugar and the list goes ON.EAT a rotation diet--food allergies are common with hypoglycemia -making the sypmtoms more pronounced. All this is not easy but difficult and some of us have been there---done that. OH, by the way you should see a heart DR. that specilzes in conduction problems. An excellent Homeopatic remedy that helps tachycardia is Aconite 30X or 30C.It usually take about 15 to20 mins. to react.Talk to the person that you get the remedy from about proper handling. God Bless---Harry Huxford
: Dear J.D.Williams,I read yours posting and my reply this morning and I want to say I'm sorry for sounding so harsh and uncearing---barking out directions.I should have been more concerned about your feelings.
: As you may know there are many disorders that come without warning and you may be totally unawear until you have it.Some are related to your genes, life style or for any number of reasons including unknown!!!You know we do not live in a perfect world but one with pollution, adulterated food and illnesses that were unheard of just 50 years ago.All that compromises our immune systems resulting in probems.And,doctors are not infalliable.There are many things we just don't know. We don't even know how electricity flows in a copper wire.There are only theories but we use electricity daily without a second thought.The point I wanted to make is that we don't have to know everything about something to use it effectively. Doctors have to give disorders names in order to treat. Your body usually tells you there is something wrong so treat it with what's available.You may have disorders that are never ID'd. Your only defense is to become very knowledgeable and do what you can. Good Luck---Harry
dear jd, I have the same problem you have and no diagnosis. 8 yrs. i have been going throught these things i call attacks. It's like stroke like symptoms. I've handled this by eating every 2 hours even through the night. It did slow down the accurance of the bad attacks but i must keep a very balanced diet. A doctor gave me a med. called rezulin which has helped alot. It's for diabetics but it keeps my blood sugar level in the morning when i have the worst symptoms. every day is hard living like this. i cannot work and it has affected my whole famliy,they hate to see me go through this. Even my gp feels sorry for me. I have a pitiutary cyst,a kidney cyst in one kidney and a growth in the other, enlarged thyroid,etc. I believe there is a harmonal thing going on that is not your every day disorder. At this point I feel i must be patient because i have no anwsers right now. I feel what ever is wrong might reveal itself in time. Emotionally i have run the gamet of feeling from crying and saying its no fair to be tortured like this with no help, to not doubting my sanity and to completly put my trust in God no matter what. the doctors say it all in your head but i don't buy that nad i will keep searching until i find a answer. If i never do which is a possiblity, I will just make the most out of the life and never lose my will to live. may God bless you and give you his peace. firstname.lastname@example.org