Thursday, June 25, 2009
So, I left work in February. When I left, I thought it would be only temporary--until I could figure out what was going on. Was it not enough thyroid hormone replacement? Was it too much Thyroid Hormone Replacement? Was it the combination of drugs that have been in my system? To this day, I have my theories, but no answers. My questions may never be answered by doctors. Sometimes, although I have been diagnosed with various illnesses, I sometimes collectively refer to my conditions as Environmental Illness, because I feel that various toxicities helped to contribute to the break down of my neurological system and my immune system.
In continuation, I was so desperate to get some answers that I consulted a doctor that I found on the Internet who had an office about 45 minutes away from me. The doctor was a Chiropractor who claimed to have extensive knowledge regarding the Thyroid and Thyroid issues. Yes, I was leery, because he was a Chiropractor, but he had listed many other certifications. When I called, I was in tears, because I felt so ill. The secretary assured me that he would be able to help. She was very kind.
On my first visit, the Doctor was very encouraging. He ordered numerous tests including a stool test, blood test, and a hair analysis. He agreed that the "traditional" doctors don't do much in terms of treatment for people with Thyroid issues. He also put me on a detox diet in which I could only eat fruit, vegetables, and some meat. Usually, there is no meat involved in the detox diet he prescribes, but my weight is so low already that I was allowed to eat meat. I was put on green food tablets, a protein shake, fish oil, and a few other things. I was on this diet for about a month or two. I remember not being able to eat my usual Easter Dinner because of the diet--that hurt. On this diet, I continued to suffer from constipation. I was told to take something called Turkey Rhubarb and to drink more water. Well, I was drinking a lot of water, and the Turkey Rhubarb made my stomach hurt.
On the next visit, his nurse went over the results of the tests. There was a lot covered. I will discuss some of the more important points. I was told that I suffered from Adrenal Exhaustion. I was told that I had food sensitivities to milk, soy, and eggs. My cholesterol was a bit high as usual (common in patients with Thyroid issues). I was also told that I had a high level of some metals such as lead and cadmium in my system. The tests showed that I had a very low amount of digestive enzymes, a high amount of bacteria in my stomach, various stomach infections such as toxoplasmosis and several others. Some of these results could explain my elimination issues and inability to gain weight.
I now know that this doctor was on the right path as far as some things. I believe the results of the blood tests and the stool tests, because the lab that processed the tests is a reputable lab. I'm leery about some of the results that were received through the hair analysis. Some items have been confirmed by other doctors and/or second opinions. For example, even more food
intolerances were eventually confirmed by a blood test ordered by my allergist. The stomach bacteria was confirmed by a test done by my gastroenterologist. And, I have a history of mineral and vitamin deficiencies. In terms of the metals, I had a blood test done by another doctor who specializes in Environmental Issues. This test showed that the level of metals were not elevated, but I have read several sources that say that Hair Analysis is the best way to measure metals in the body. So, perhaps the doctor's test were accurate for the most part.
However, some of the doctor's practices did not sit well with me. For example, his test showed that I had an intolerance to soy, eggs, and dairy. But, as part of my detox diet, the doctor had given me a protein shake to take three times a day that contained milk and soy and I had been eating eggs during my diet. The test that showed food intolerances did not come back until after I had finished the detox. So, I had been ingesting lots of soy, eggs, and dairy for two months. The test should have been done before telling me to take the protein shake. Ingesting a large amount of the soy, milk, and eggs could have potentially wreaked even more havoc on my intestines, and have caused me to be more ill.
The doctor did not seem interested in treating my Graves' Disease and Thyroid issues, although that was my major concern. It seemed like all he did was throw supplements at me (i.e. Chelation pills to remove heavy metals, cream for Adrenal Fatigue, enzymes, etc.).
The real disappointment was that he acted like he would address my thyroid issues. He even told me there was a medical doctor in his office who could prescribe Thyroid Hormone Replacement. That turned out to be a lie.
At the doctor's suggestion, I bought a bottle of supplements that he gave to his Parkinson's patients. Although, I still shake, at that time, I was shaking as if I could have had Parkinson's Diseases. I bought the expensive supplements. But, I decided not to take them--out of fear. After all, he hadn't done any test on me to justify me taking pills that he gives to Parkinson's patients.
When I asked this doctor if it was possible that I had been given to much Thyroid Hormone Replacement (I was bouncing off of the walls), he performed some ridiculous kinesiology test that would test for weakness/intolerance. The doctor had me hold my pill in one hand. Then he had me hold my mother's hand. Then, he held her hand. After doing that, he said the medicine was okay for my system, because he didn't feel any weakness in my mother's hand. Now doesn't that sound ridiculous? It did to me. That was the straw that broke the camel's back. It was after that, I decided I would no longer be his patient. While some people believe in kinesiology, I do not believe in the method he used. I would eventually find out that I was taking too much Thyroid Hormone Supplement. So, his "measurement" technique was ridiculous in deed.
Even if he would have discussed why it was necessary to take all of the supplements in order to...But, it was just "take all of these." I asked questions, but got no clear plan of action as to where he was going with all of it. I spent a lot of money on the supplements and visits to his office and insurance did not cover this type of treatment. I was very disappointed about being so encouraged that he could help me and then realizing that he probably would not be the one to help me. But after prayer and discussing the situation with others, I am just grateful that I did decide to stop seeing this doctor.
Even though I feel duped by this doctor in many ways, I feel blessed that his tests opened my eyes up to some things. The test results led me to investigate my intestinal issues. The results led me to further investigate food intolerances. While I feel he was a snake oil salesman in a sense, it was a necessary part of my path. I am still searching for help and answers. This was to be a part of that puzzle.
My dream doctor: A doctor who is knowledgeable medical doctor with an equal amount of knowledge in Naturopathic Medicine. I'm still searching...
The next "My Story" will discuss how an internist sent me to a Neurologist.
Monday, June 22, 2009
Another common theme is that the doctors who treat patients with Autoimmune Diseases don't often mention the importance of food choices and antioxidants in the diet. The terms diet, exercise, antioxidants, stress, or anything that might remotely help, aside from medication, have NEVER been mentioned by any of my Endocrinologists over the last eight years. I have been reading that this is the case with many whom suffer from Autoimmune Diseases--the doctors test you and medicate you and send you on your merry way.
My questions is "Why is this the case with doctors?" Is it that they do not know? (That would be hard to believe, but you never know with some of them. I wonder how much of the medical school curriculum focuses on diet and exercise and stress reduction and inflammation--probably not much). Is it that they do not care? Is it about money? If you remain sick, they prescribe drugs, and...The pharmaceutical industry is a booming industry. There is money to be made. It truly makes you wonder.
A change in diet and lifestyle may not help to relieve symptoms in all patients who have Autoimmune Disorders. I believe it depends on many factors. Spiritually, I believe that God grants healing to some people. And, some people are not meant to be healed here on earth. However God does give us free will. So, I figure that it is worth a try to find out if something may help relieve some or all symptoms in relation to Autoimmune Disease and other illnesses. I have come across quite a few success stories.
I always love it when we are advised to consult with a doctor when trying vitamins and a change in diet. Well, I advise being careful with anything. It would be good to mention to your doctor that you may attempt a new diet and/or supplementation. But, unless you have an exceptional doctor, don't expect much in response. I've gotten responses like, "You can try it, but I've never heard a connection between food and..." I've even been tempted to take in books to show them evidence of these findings. I have mentioned articles and research I've done on the topic. But, I find that my doctors simply haven't been that interested. Although, I must note that my allergist has been more supportive than other doctors I've had. So, I am appreciative for that.
The following are discussions/articles regarding Autoimmune Disorders, and information on how diet can possibly help to improve symptoms:
A site for people who have Sarcoidosis
The Paleo Diet
Thursday, June 18, 2009
This post covers what happened between November 2007 and February of 2008).
The Endocrinologist that I had for a few years decided to reduce my Synthorid, and he added Cytomel (another type of synthetic, Thyroid Hormone) to my regimen. After taking this medicine, I still wasn't feeling any better. So, I decided to consult another Endocrinologist. He turned out to be rude and very arrogant. But, through blood work, I did find out that I had become extermely Hypothyroid while on the new combination of medications.
By January, I decided to visit the Endo who prescribed me Synthroid and Cytomel. I asked this doctor to put me on Armour Thyroid, a natural Thyroid replacement that comes from Pigs. I had found a site called Stop The Thyroid Madness. The site discussed many aspects of how Synthetic Thyroid Hormone Replacement is not good for some people. Well, I knew that it never worked for me.
So, I went back to the Endo who had put me on Synthroid and Cytomel. Since it wasn't working, I asked to be put on Armour Thyroid. But, I let the doctor talk me into taking Levoxyl, another Synthetic Thyroid Hormone Replacement. Well, if I thought my body was jittery and out of control on the Synthroid, Levoxyl really upped the level of anxiety and nervousness. I remember being at work and just feeling terrible on this medication. I called my Mother from work in tears, because I felt so poorly. She called the Endo for me, and I soon had a prescription for Armour Thyroid.
The next day, I began taking the medication. I felt a little better off of the Levoxyl, but not much better. By, the middle of February, my body was giving me more signs that something was terribly wrong.
By the middle of February, I left my job as a teacher. My intentions were to take only a temporary leave of absence until something could be figured out in terms of what was going on with me. That day, I also stopped taking my antidepressant. I figured why take it since I felt worse than ever and was having the same symptoms as before and then some. I had even been noticing that my neck was moving involuntarily. I would later realize that this would be the final stages before the Dystonia would fully reveal itself.
Anyway, I told my Vice Principal that I didn't feel well and would need to leave work. I did this very abruptly, because I didn't really know what the heck was going on. So, many of my co-workers had no idea what was going on and many still don't know. How could I communicate to them what I was not understanding? I felt bad about leaving so suddenly, but there was nothing I could do about that at the time. I knew it was physical, but I truly felt like I was losing my mind. None of my doctors (Endocrinologists and Psychologist) were being of any help in helping me to try and figure out what was going on.
In a desperate attempt for help, I even went back to that arrogant Endocrinologist. He took a blood test to check the levels of my Thyroid Hormone, etc. Those tests came back normal. Since my tests were normal, he had nothing for me. I explained that I was uncontrollably hyped up and I felt like crap--fatigued and depressed and light headed at times. He told me that was something for my "shrink" to handle. Needless to say, he is no longer my physician. The nerve!
So, I ended up trying another Endocrinologist. I often joke that I will have tried every Endocrinologist in my city. I asked her to check my Adrenal Glands along with my Thyroid Hormone level. The blood test showed the Adrenal Glands were okay. I theorize that they were not okay, at this time, even though the test showed that my Adrenals were okay. Sometimes, these types of test do not tell the full story. She also told me to increase my Thyroid Hormone Replacement.
I wasn't totally comfortable with that suggestion--my palpitations were worse, the circles under my eyes were darker, and the list goes on and on. I looked and felt physically ill. So, I went back to the other endocrinologist (not the rude one). The blood test showed that I needed to be on more Thyroid Hormone Replacement.
While I was still weary of taking more Thyroid Hormone Replacement, I started to increase the amount since two doctors had told me to do so. For those thinking about trying Armour Thyroid or any other natural Thyroid Hormone Replacement, PLEASE make sure that your doctor has experience with this medicine.
I now see that my Endocrinologists did not know what they were doing. They are so used to prescribing Synthetic Thyroid Hormone that they probably do not have much experience with the others(natural Thyroid Hormone Replacements). In fact, I am finding out through my research and reading that many Endocrinologists will not prescribe natural Thyroid Hormone Replacement. These are strong medications that can and will harm weakened bodies if not administered correctly.
Even though my blood tests were normal, my symptoms were not normal. PLEASE be careful...I wish I would have known what I know now. But, I guess it was a process, and I would not know the outcome until it reared its ugly head.
In retrospect, I think that I should have been properly weaned off of Synthroid. And, my dosage of Armour Thyroid should have been slowly increased. I was given 60mg right off. Then I was told to increase to 90 mg of Armour Thyroid shortly after. This coupled with other issues (some known and some unknown) was obviously too much for my body to handle.
In the next "My Post," I will discuss what happened next: I ended up going to "An Alternative Doctor." Finding this "doctor" was a mixed blessing and a disaster rolled up into one...
Tuesday, June 16, 2009
This link is to the article about how the student discovered she had Chron's Disease.
This is a link that explains Chron's Disease.
Saturday, June 6, 2009
General Autoimmune Disease. This site discusses the possible causes, triggers, and ways to possibly reduce symptoms of Autoimmune Disease.
Graves' Disease. This site offers a comprehensive insight into dealing with Graves' Disease. It offers information about antioxidants, diet, and a question/answer section.
Sarcoidosis. The classic feature of sarcoidosis is the formation of granulomas, microscopic clumps of inflammatory cells that group together (and look like granules, hence the name). When too many of these clumps form in an organ they can interfere with how that organ functions.
Facebook is a social networking site. You can connect with people and organizations who have similar interests and/or health concerns.
WEGO Health. This is a site that I was blessed to find. There are discussion groups for a wide range of issues ranging from Autism to Dystonia.
The Complete Encyclopedia of Natural Healing: A comprehensive A-Z listing of common and chronic illnesses and their proven natural treatments (2005) by Gary Null, Ph.D.
This "thick" book discusses natural approaches that may help with symptoms for a "wide" range of conditions including Lupus, Anemia, and Premenstrual Syndrome.
SuperHealth (2009) by Steven Pratt, M.D.
This book suggests ways to improve your health through diet, nutrition, and exercise. SuperFoodsRX by this author is also worth reading.
https://www.msactivesource.com/msasProject/msas.portal/_baseurl/threeColLayout/MSASRepository/en_US/msas/home/index.xml A site for people who have MS
Website of Courtney Smith, founder of Control Your Auto Productions. Courtney lives with Myasthenia Gravis, an Autoimmune Disease. She has made a documentary, Beauty Does Lie: The Untold Stories of Autoimmune Diseases.
Friday, June 5, 2009
I went through this same thing last summer when there was a back order for Armour Thyroid. I am not understanding why this keeps happening. I'm not trying to be dramatic, but I'm really not understanding how there is continuously a shortage of this medicine when it imperative that patients take the medicine. Yes, there are alternatives. But, some people, such as myself, cannot tolerate them.
Last year, my Endocrinologist's nurse told me to take Synthroid when I called the doctor's office in regards to the shortage of medicine and asked about the possibility of having my prescription filled out of the state through a compounding pharmacy that had some available. It's not as simple as switching medications. More importantly, his nurse shouldn't have been giving out that type of advice--not being the doctor. The Nerve!
It turned out that I didn't have to utilize the compounding pharmacy. Luckily, I was able to find a nearby pharmacy that had enough Armour Thyroid. But, the pharmacy that I usually go to as well as several other pharmacies could not get me any medication at that time due to the back order.
I am very concerned about this occurrence. I do not want to ever be on Synthroid or synthetic thyroid hormone ever again, because I believe it has done damage to my body. I am not slandering the product. I just know that my body does not react well to that medicine. I could tell you the horror stories (Actually, I have in other posts on my Blog).
So, I called Forest Pharmaceuticals, the manufacturer of Armour Thyroid. In response to a series of questions that I asked, I found out the following:*Many of the Armour Thyroid medications are on back order.
*Armour Thyroid was "Grandfathered" in regarding FDA approval.
*The representative could not answer whether or not Armour Thyroid would be discontinued. When I asked for an address and person to whom I could inquire about this concern, she said that no one would be able to answer that question at this point. "This sounds fishy to me." I will probably write to the company, anyway--just to see.
I am terrified that this medicine might be discontinued at some point. While I wish I didn't have to take any thyroid medicine (due to side affects) , Armour Thyroid "seems" to be the best alternative thus far.
For anyone who wants to get on the "contact" bandwagon, I have some information for you:
(If you know anyone who takes Armour Thyroid, please share this information with them).
Phone number for Forest Pharmaceuticals: 1-800-678-1605, extension 7301
Fax number to Forest Pharmaceuticals: 314-493-7457
Email to Forest Pharmaceuticals: email@example.com
Address to Forest Pharmaceuticals:
Professional Affairs Department
13600 Shoreline Drive
St. Louis, MO 63045
Thursday, June 4, 2009
As a 32 year old woman, she did not fit the profile of someone who would have ovarian cancer. Through her persistence to be tested for cancer, she was able to help save her life. Thank God that this woman didn't ignore her speculations!
Recently, I had a 48-year old cousin who passed away from colon cancer. In terms of age, he did not quite fit the profile either.
I have heard too many horror stories where doctors resist investigation of health issues, because someone doesn't fit the profile.
Attached is a link to the article: http://blogs.blackvoices.com/2009/05/29/black-gyrl-cancer-slayer-says-be-your-best-advocate/
Wednesday, June 3, 2009
Book Recommendation: Recapture Your Health: A Step-By-Step Program to Reverse Chronic Symptoms and Create Lasting Wellness
Dystonia has caused me great physical pain; I experience tightened muscles that spasm in my neck and back and pain that shoots down in my arm. So, of course, I began to research alternative methods for treating this disorder. Disappointingly, aside from possible invasive brain surgery called Deep Brain Stimulation, for which not all Dystonia sufferers are even eligible, there are not many other options besides the surgery, Botox, and meds.
While the Botox has helped and I am grateful that this is an option, it has not cured my symptoms. Through research, I did find cases where physical therapy helped some patients who have Dystonia. So, I spent much of last summer going back and forth to physical therapy sessions. Up until the physical therapy, I was not able to turn my head to the left. My neck was locked in a painful, spasming state. So, I do credit Botox and Physical Therapy with helping my condition.
Currently, my neck is more straight or centered. However, I still suffer from painful spasms and pain that cannot necessarily be seen; but I sure feel it. Some days it is still hard to hold my head up due to the spasms and weakness in my neck. So, I continue in my quest for more relief from my symptoms.
I continue to read/research remotely similar conditions. I try to implement things that I feel might help. I remain very prayerful about anything I choose to try. (i.e. supplements, etc.). More importantly, I am in consistent prayer that the Lord will continue to place Favor upon me and lead me to powerful resources. Most importantly, I pray for healing.
I am blessed by the support of several family members and friends. On occasion, I have been asked quite a few questions and have received some interesting comments from family, friends, and/or acquaintances regarding my illness. I will discuss a few of them.
Someone was concerned that I was not accepting my illness, because of the consistent research that I do in terms of searching for ways to make myself healthier.
While my approach may not work for everyone, if I do not continue to search for ways that will help me to feel better and function better, then I feel that my existence would be very bleak and depressing. When I stop looking for other options or ways to improve my health, I will have given up hope. Don't get me wrong, some days I do get a bit down and/or upset, because I may be in pain and I become frustrated because I want my progress to move more quickly. However, I pray for patience at that point.
My doctors told me that my illness (Dystonia) will never go away. I am thankful that we have doctors to help guide us in our journey. However, no doctor has all of the answers. In fact, none of my doctors have shown much interest or knowledge about all of my individual issues or illnesses(i.e. the Endocrinologists knows nothing about Dystonia; the Integrative doctor doesn't mention anything about Autoimmune Disease). In my personal experiences with many doctors, they solely focus on "medicating" or "treating" me for the issue that they are specifically trained to deal with versus trying to figure out ways to help me become healthier so that my body will develop a more strengthened immune system.
I understand that a doctor can only treat you based on their area of specialization or expertise. However, it would be nice if a doctor even attempted to try and make some connections. Heck, if I were a doctor, which I'm not, I'd be hypothesizing ,"It's possible that a contributing factor of your developing Dysonia is..." When I pose these types of questions and/or research to the doctors, some of them get offended, some of them listen but don't really give it a second thought, some simply don't have enough interest to care, and some simply are not knowledgeable enough about various aspects of health to think outside of the box. I know that doctors are up under various guidelines by the AMA, but I'm sure that they could do more than to simply recite technical jargon that comes from a textbook. It's ridiculous!
For example, I have Graves' Disease which is an autoimmune disease. Not one of my endocrinologists have ever mentioned the importance of a healthy, anti inflammatory diet. I was never even told that I was at risk for osteoporosis; I had to find that out the hard way. Research has proven that the anti inflammatory type diets have helped many patients with Autoimmune diseases to improve their symptoms. I only wish that I would have known the importance of this type of diet and the importance of taking antioxidants earlier. But, better late than never. Yet, my endocrinologists simply read my results from the blood tests and determine whether or not the dosage of my medication is correct--nothing more, nothing less.
The body works synergistically. So, wouldn't it make sense to treat the nature of illness in that manner as well? I have consulted with an Integrative Doctor through a reputable hospital. However, while I am blessed to have located this doctor for guidance, this doctor does not make any attempt to connect the Graves' Disease and the Dystonia and the Leaky Gut Syndrome, or any other issues. I would venture to say that all of my illnesses are connected in some way.
It would be very beneficial if it was the normal practice of all physicians to take the time to develop hypotheses and theories for cases/conditions that aren't so straightforward. After all, fundamentally, aren't those the principles that science is based on? But, it's more like wham, bam, thank you ma'am and you're rushed out of the office. We also must give our insurance companies credit for putting a cap on the time that we are "allowed" to spend with our doctors.
Unfortunately, in this day and age, one doctor or medical professional may not be the only answer when you are suffering from chronic, degenerative illnesses. But, a combination of approaches might be necessary to see improvements and hopefully eventual healing.
Hopefully, in the future, more doctors will be trained to take a "whole body" approach when it comes to the practicing of medicine. Doctors need to understand that one out of whack system can affect another system. This type of training would have to be undertaken very carefully and not all doctors would be able to handle it. But, I believe their are some medical professionals who may be brilliant enough to handle this type of challenge.
The "dream" doctor would need to have the following qualities: they must be highly intelligent, the doctor must be able to think critically, the doctor would need to have an insatiable curiosity about their patients' unique issues (because we know that not all patients are created equal; what works for one may not work for all), they would need to be motivated to keep up with ongoing research, and an extreme amount of compassion would be nice. And finally, the doctor should be able to think outside of the box. I would love to be in the care of a doctor like that (which insurance would cover)!
I am fully aware that illness and death are a part of life. Some will get better and some will not. However, God gives us free will. And, it is my philosophy that I must do what I can to help myself. So, I pray that the Lord will continue to give me strength to remain open to positive possibilities.
Be Careful about what you read, ingest, etc.
I have been given this advice on several occasions. This is good advice. As mentioned in prior posts, I take a variety of supplements, I am on a restricted diet, and I have tried some alternative treatments such as acupuncture. Some things seem to help and some don't.
To anyone trying alternative treatments, I would advise you to be careful. To anyone trying "traditional treatment" through a doctor, I advise you to be careful, too; I have had a host of problems associated with supposedly "good" doctors who don't seem to know much about the medicines they are prescribing or conditions that they are supposed to be treating. A part of a doctor's oath is "Do No Harm." Unfortunately, unintentional harm (due to neglect, dismissal of patients' concerns, unwillingness to do research in an effort to help, etc.) happens everyday--I can attest to that.
I have read that it takes 10-12 years for the powers-that-be in traditional medicine to buy into certain treatment protocols and illnesses. I believe this is why illnesses such as Leaky Gut Syndrome are not more widely understood or treated. I believe that once, hopefully in the near future, this type of illness is correctly treated and understood, there might be less suffering in the way of degenerative illnesses such as cancer and Autoimmune illnesses.
I guess that I've become somewhat of an experimenter in the sense that I am willing to try nontraditional approaches(i.e. vitamins, acupuncture, yoga etc.) in an attempt to help some of my medical issues/symptoms. I pray on everything before I choose to embark on it, and I pray while I'm "in the midst of it all." I feel that the Lord has blessed me with a certain amount of intelligence that allows me to read and understand the articles and books that I have encountered. Now, if it's something that looks too technical and hard to understand, I know to leave it alone-LOL.
While I do get weary and very frustrated, I try to remain faithful. Everyone will not understand why I do what I do or why I think the way that I do. That can be frustrating. But, in the end, I don't understand everybody either. So, this is okay and completely understandable.
Some might believe that I should release everything unto the Lord; I agree. I do believe that I have no control over my situation, and the Lord will determine my plight. However, we have all been given Free Will. I choose to use my Free Will to try and figure out some ways to make my life more physically comfortable. I simply pray for His guidance. I don't think the Lord would have a problem with that. As long as I'm not constantly complaining or have a woe-is-me attitude, I think He is okay with me.
God Bless and thanks for reading my Blog
Monday, June 1, 2009
Today, I came across Dr. Hyman on YouTube. He has done a series of interesting short videos, in promotion of his book, that discuss the above topics and other health realted issues.
As inflammation is common in pretty much all Autoimmune diseases and many other illnesses, this is a good site for those suffering with these types of issues to visit. If you do not have Autoimmune issues, this site is still a beneficial resource for information on nutrition and other general health topics.
If you are interested in hearing Dr. Hyman, please click on the above title, Dr. Mark Hyman on You Tube and you will be connected to the site.