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Waiting to die...
Feb 12, 2008 11:06AM
- 2 comments
I have researched myself almost to death the last 3 years and seem to have more "Big Picture" knowledge than the hundreds of GPs and specialists who have evaluated me concerning Auto-Immunity (related diseases/syndromes, the effects of them, and how they relate to/are connected with each other).
I was Dx'd with Hashimoto's Thyroiditis (with confirmation of positive AntiNuclear Antibodies) 15 years ago. That diagnosis has not wavered in the interim, however, just in the last three years I seem to have acquired a whole new list of "confirmed" and "non-confirmed" diagnoses due to the fact that the doctors and/or specialists I have been to just in the last 3 years either are clueless about how to PROPERLY manage my Thyroiditis, are AFRAID to be involved in the management of my Thyroiditis, or have simply just been taught to "Pass the Buck" (me being the buck in this example), pawning me off to other incompetent doctors who usually confirm the diagnoses (but still do nothing about treatment of any of my illnesses) or contradict the diagnosis(es), which resulted in the non-treatment of my illnesses still yet.
March 2007 my TSH level was 137+. My GP wrote a prescription for Levoxyl .125 (I had been taking Levoxyl .112 for 14 years with desired results until three GPs ago refused to write a prescription at all, hence the high TSH level). The increased dosage was WAY too much for my body to withstand - over 14 years, I had become familiar with how my body reacts to the meds, and after about two weeks could not continue a daily intake of that caliber. I contacted my GP who INSISTED I continue with that dosage - so I was either forced to and endure the effects, or play around with the pills until I found a method of ingestion that agreed with my body. So I began taking one every other day - that wasn't an agreeable method. Then I began taking just half a pill every day - that wasn't an agreeable method, either and WAIT! playing with the pills to affect the proper dosage in the end would not accomplish what should be accomplished (finding the CORRECT daily dosage of thyroid medicine)...so I stopped taking the Levoxyl altogether.
Brief Familial Medical History: My research culminated in my determining that the diagnoses for my mother (62 yrs old), myself (39 yrs old), and one of my daughters (7 yrs old) DO have a connection - we are all confirmed ANA+, just are affected differently. A year ago I found out that I did not just inherit this from my mother's side of the family, but from my father's side as well, after learning my cousin died of amyloidosis (what a huge loss to our family and the patients SHE treated when she was alive).
I recently read Dr. Lupo's response to the question: "What would happen is(sic) you stop your thyroid medicine"?
"...you will eventually go into a coma (usually takes 2-4 months)."
Dr. Lupo???
Since reading your response, I have been doing more research to find out if anyone else has ever answered that question, for two reasons. I understand the response and its impact, however, I am wanting to understand what happens during the time meds are stopped and the lapsing into a coma, and also the timing (2-4 months).
Detailed Personal Medical History/symptoms: As mentioned, March 2007 my TSH was 137+, and I have not taken thyroid medicine since the disasterous 2 weeks that month on .125 dosage. It has been almost a year for me without thyroid hormone replacement. I am in horrible physical pain (all the classic symptoms of non-managed Hashimoto's thyroiditis), with the latest development of (now frequent - several times a day) periodic excrutiating pain in the center of my chest, accompanied with headaches and dizziness to the point of feeling as if I am going to pass out. The accumulation of the standard joint and muscle pain (dx - carpal tunnel syndrome, myalgia, RA), lower back/knee/feet/shoulder pain almost unbearable about 18 hours before it rains here (ex-husband calls me a human barometer), lower back injury resulted in 2 surgeries), chronic mucosal back-of-the-throat drip always giving me the urge to clear my throat, tingling, weakness and numbness in feet and hands, vision changes/dry eyes, confusion/inability to focus, fatigue/insomnia, HORRIBLE anxiety (dx - General Anxiety Disorder/Agoraphobia, Depression), digestion problems (excrutiating pain upon eating, followed by chronic diarrhea), blisters (for lack of a definitive term), memory issues (frustrating!), nerve pain/slurred speech/words difficult to pronounce (dx - peripheral neuropathy), decreased oxygen exchange and feeling "out of breath" (dx - asthma), decreased circulation to hands and feet (always cold, and usually show bluish/purple hue), frequent bruising, decrease in hearing, heart palpitations, the FEELING of increased heart rate (panicky, anxious feeling), low body temperature, frequent abdominal pain (dx - IBS), some mood swings (gee, THAT'S not a surprise given the immense stress I live with on a day to day basis, coupled with the frustration of doctors' apathy towards me), facial and sporadic body hyperpigmentation, sudden physical reaction to sun exposure, periodic nausea, life-long metabolism issues (never fat/obese, but always "heavy" for my height and stature), 9 years of abnormal urinalyses with subsequent barrage of tests that resulted in ... no surprise here - NO diagnosis or even a plausible explanation as to why, hemorrhage 3 weeks of every month (resulted in birth control usage for years, then thermal ablation, and ultimately an attempt at the removal of my uterus 2 yrs ago)...did I miss anything? ...probably
The past month or so my physical well-being has plummeted drastically, as well as my mental well-being. Yes, I have a list of tests that should be performed and also a list of "possible" diagnoses that can be matched up with the various symptoms I am subjected to, however, NOW I no longer have medical insurance - my ex husband was laid off from his job, we couldn't afford the COBRA premiums to continue coverage, and I have physically/mentally been unable to work since September of '06. I am now just tired...as one member quoted "sick and tired of being sick and tired". Because of the additional stress and frustration (as if I haven't enough already) of trying to obtain financial/medical/emotional assistance for both myself and my 7 yr. old daughter (who has Celiac Disease and Pancreatic Insufficiency) from a loooooong list of "supposed" resources out there such as Training Hospitals, local churches, Social Security Administration, support groups (just selecting which ONE to contact is incomprehensible; geez, I would be able to attend a different support group every night for two weeks). As of recently and today, I feel I do not even have the mental faculties to pursue assistance any longer. The thought of going through any more "processes" or procedures is daunting. I have always been independent, the caregiver of my 4 children, "doing" for everyone else but myself and the daily tasks of life get increasingly more difficult. Imagine my relief when, two weeks ago, I was told by someone with the capability of getting me/us back on the right track physically/financially/emotionally that that was actually going to happen! That was short-lived - a week ago, I received a letter informing me/us oops...we can't help you...
The worst part of all of this is either my real or perceived impression from my family members that I can't POSSIBLY feel all of these symptoms or be diagnosed with what I've been diagnosed with (with diagnoses yet to come, if I live that long). I feel like they are "appeasing" or "coddling" me. I now downplay everything to them because of that, however, that results in either my real or perceived impression from my family members that I'm lazy or don't want to do anything.
Sorry about the length of this, basically I just wanted to get this off my chest/mind, and have this information documented/compiled in one location...it took a very long time to form the content of this journal entry...focusing is difficult.
I was Dx'd with Hashimoto's Thyroiditis (with confirmation of positive AntiNuclear Antibodies) 15 years ago. That diagnosis has not wavered in the interim, however, just in the last three years I seem to have acquired a whole new list of "confirmed" and "non-confirmed" diagnoses due to the fact that the doctors and/or specialists I have been to just in the last 3 years either are clueless about how to PROPERLY manage my Thyroiditis, are AFRAID to be involved in the management of my Thyroiditis, or have simply just been taught to "Pass the Buck" (me being the buck in this example), pawning me off to other incompetent doctors who usually confirm the diagnoses (but still do nothing about treatment of any of my illnesses) or contradict the diagnosis(es), which resulted in the non-treatment of my illnesses still yet.
March 2007 my TSH level was 137+. My GP wrote a prescription for Levoxyl .125 (I had been taking Levoxyl .112 for 14 years with desired results until three GPs ago refused to write a prescription at all, hence the high TSH level). The increased dosage was WAY too much for my body to withstand - over 14 years, I had become familiar with how my body reacts to the meds, and after about two weeks could not continue a daily intake of that caliber. I contacted my GP who INSISTED I continue with that dosage - so I was either forced to and endure the effects, or play around with the pills until I found a method of ingestion that agreed with my body. So I began taking one every other day - that wasn't an agreeable method. Then I began taking just half a pill every day - that wasn't an agreeable method, either and WAIT! playing with the pills to affect the proper dosage in the end would not accomplish what should be accomplished (finding the CORRECT daily dosage of thyroid medicine)...so I stopped taking the Levoxyl altogether.
Brief Familial Medical History: My research culminated in my determining that the diagnoses for my mother (62 yrs old), myself (39 yrs old), and one of my daughters (7 yrs old) DO have a connection - we are all confirmed ANA+, just are affected differently. A year ago I found out that I did not just inherit this from my mother's side of the family, but from my father's side as well, after learning my cousin died of amyloidosis (what a huge loss to our family and the patients SHE treated when she was alive).
I recently read Dr. Lupo's response to the question: "What would happen is(sic) you stop your thyroid medicine"?
"...you will eventually go into a coma (usually takes 2-4 months)."
Dr. Lupo???
Since reading your response, I have been doing more research to find out if anyone else has ever answered that question, for two reasons. I understand the response and its impact, however, I am wanting to understand what happens during the time meds are stopped and the lapsing into a coma, and also the timing (2-4 months).
Detailed Personal Medical History/symptoms: As mentioned, March 2007 my TSH was 137+, and I have not taken thyroid medicine since the disasterous 2 weeks that month on .125 dosage. It has been almost a year for me without thyroid hormone replacement. I am in horrible physical pain (all the classic symptoms of non-managed Hashimoto's thyroiditis), with the latest development of (now frequent - several times a day) periodic excrutiating pain in the center of my chest, accompanied with headaches and dizziness to the point of feeling as if I am going to pass out. The accumulation of the standard joint and muscle pain (dx - carpal tunnel syndrome, myalgia, RA), lower back/knee/feet/shoulder pain almost unbearable about 18 hours before it rains here (ex-husband calls me a human barometer), lower back injury resulted in 2 surgeries), chronic mucosal back-of-the-throat drip always giving me the urge to clear my throat, tingling, weakness and numbness in feet and hands, vision changes/dry eyes, confusion/inability to focus, fatigue/insomnia, HORRIBLE anxiety (dx - General Anxiety Disorder/Agoraphobia, Depression), digestion problems (excrutiating pain upon eating, followed by chronic diarrhea), blisters (for lack of a definitive term), memory issues (frustrating!), nerve pain/slurred speech/words difficult to pronounce (dx - peripheral neuropathy), decreased oxygen exchange and feeling "out of breath" (dx - asthma), decreased circulation to hands and feet (always cold, and usually show bluish/purple hue), frequent bruising, decrease in hearing, heart palpitations, the FEELING of increased heart rate (panicky, anxious feeling), low body temperature, frequent abdominal pain (dx - IBS), some mood swings (gee, THAT'S not a surprise given the immense stress I live with on a day to day basis, coupled with the frustration of doctors' apathy towards me), facial and sporadic body hyperpigmentation, sudden physical reaction to sun exposure, periodic nausea, life-long metabolism issues (never fat/obese, but always "heavy" for my height and stature), 9 years of abnormal urinalyses with subsequent barrage of tests that resulted in ... no surprise here - NO diagnosis or even a plausible explanation as to why, hemorrhage 3 weeks of every month (resulted in birth control usage for years, then thermal ablation, and ultimately an attempt at the removal of my uterus 2 yrs ago)...did I miss anything? ...probably
The past month or so my physical well-being has plummeted drastically, as well as my mental well-being. Yes, I have a list of tests that should be performed and also a list of "possible" diagnoses that can be matched up with the various symptoms I am subjected to, however, NOW I no longer have medical insurance - my ex husband was laid off from his job, we couldn't afford the COBRA premiums to continue coverage, and I have physically/mentally been unable to work since September of '06. I am now just tired...as one member quoted "sick and tired of being sick and tired". Because of the additional stress and frustration (as if I haven't enough already) of trying to obtain financial/medical/emotional assistance for both myself and my 7 yr. old daughter (who has Celiac Disease and Pancreatic Insufficiency) from a loooooong list of "supposed" resources out there such as Training Hospitals, local churches, Social Security Administration, support groups (just selecting which ONE to contact is incomprehensible; geez, I would be able to attend a different support group every night for two weeks). As of recently and today, I feel I do not even have the mental faculties to pursue assistance any longer. The thought of going through any more "processes" or procedures is daunting. I have always been independent, the caregiver of my 4 children, "doing" for everyone else but myself and the daily tasks of life get increasingly more difficult. Imagine my relief when, two weeks ago, I was told by someone with the capability of getting me/us back on the right track physically/financially/emotionally that that was actually going to happen! That was short-lived - a week ago, I received a letter informing me/us oops...we can't help you...
The worst part of all of this is either my real or perceived impression from my family members that I can't POSSIBLY feel all of these symptoms or be diagnosed with what I've been diagnosed with (with diagnoses yet to come, if I live that long). I feel like they are "appeasing" or "coddling" me. I now downplay everything to them because of that, however, that results in either my real or perceived impression from my family members that I'm lazy or don't want to do anything.
Sorry about the length of this, basically I just wanted to get this off my chest/mind, and have this information documented/compiled in one location...it took a very long time to form the content of this journal entry...focusing is difficult.
I am your age, I have the SAME kind of life with the same illness and symptoms. I also hate the minimizing and the judgements by family so I have to ignore them, self preservation ya know? Remove the negs from my life is what I try do now. It does help. I try to believe in myself it is the only defense. Anyhow, I am in the same boat as you- your not alone even though you probably feel that way. I can only validate everything you are experiencing, & I promise your no hypochondriac. I know you must be angry- doctors and regular people tend to trivialize the disease. I am not exactly your most postive reader since I am just so trapped and run down from 10 years of this. But I have good days to, and I hope you find strength to keep after your dreams anyway. I have had a bad week, and feel quite vulnerable.........I was almost about ready to throw in the towel until I found your letter here. Thanks for sharing, I don't feel quite as crappy now, just a little teary. Even though my mental capacity has dulled so much, I am still somewhat intelligent, yet emotionally unstable now. Ya know, sometimes sad with a measure of snappiness because of feeling really lousy as the grind of life demands participation. My new ADD problem is a pain in the *** to, so I try to accomplish important things that require mental energy right away upon waking since I loose that ability by the later part of the day. If I don't sleep enough because of insomnia I am screwed for productivity for that entire day. I have half finished tasks all over so I better get going and start a new one. Good luck to you, and I will pray for your recovery. Love, Fossilflower
Wow... there are people like me, with all the same problems, the worst is the family... so sad they think Im lazy too. I have been going through my illness since 1999. I will explain later... actually I did on my thingy. I better go to bed for now. I will be thinking about both of you.
dene
dene
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