Aa
Needing advice and some response
Hi,
I am hoping for some answers, because I am having difficulty in functioning with hypothyroidism. I recently participated in a discussion on the board where it was mentioned that there were certain challenges associated with people also having fibromyalgia syndrome with hypothyroidism. I tried to search using those key words both on this site and elsewhere, but I want to find an article that my doctor will take seriously. If there are challenges that might be being missed in my routine screening of the thyroid, I want to address them. I am basically not functioning. The sweating has started again and also my movement is out of control. These things seem to be related to my thyroid replacement. I am so down that I haven't even called to have a copy of my records sent so I could post recent lab values. I did have a ferritin test and am awaiting the results. Here are some of the symptoms that are occurring:
1) Persistant low weight-95 pounds, 5'4".
2) Trouble with temperature regulation and then sweats/with chills.
3) Restlessness and insomnia
4) Waking with pounding heart although pulse appears normal. Walking a short distance will bring on this condtion. It takes a long time of lying down for this symptoms to subside.
5) Dry skin to the point of not being able to use soap when bathing or showering.
5) Lack of appetite
6) Lack of sex drive/sexual functioning.
7) Production of small amount of breast milk.
Please try to help me find some info that might improve the doc's visit. My doc is not very good and bases all choices on lab results only.
Thanks,
Cheryl
I am hoping for some answers, because I am having difficulty in functioning with hypothyroidism. I recently participated in a discussion on the board where it was mentioned that there were certain challenges associated with people also having fibromyalgia syndrome with hypothyroidism. I tried to search using those key words both on this site and elsewhere, but I want to find an article that my doctor will take seriously. If there are challenges that might be being missed in my routine screening of the thyroid, I want to address them. I am basically not functioning. The sweating has started again and also my movement is out of control. These things seem to be related to my thyroid replacement. I am so down that I haven't even called to have a copy of my records sent so I could post recent lab values. I did have a ferritin test and am awaiting the results. Here are some of the symptoms that are occurring:
1) Persistant low weight-95 pounds, 5'4".
2) Trouble with temperature regulation and then sweats/with chills.
3) Restlessness and insomnia
4) Waking with pounding heart although pulse appears normal. Walking a short distance will bring on this condtion. It takes a long time of lying down for this symptoms to subside.
5) Dry skin to the point of not being able to use soap when bathing or showering.
5) Lack of appetite
6) Lack of sex drive/sexual functioning.
7) Production of small amount of breast milk.
Please try to help me find some info that might improve the doc's visit. My doc is not very good and bases all choices on lab results only.
Thanks,
Cheryl
Hi, Cheryl--
My history in a nutshell: I do not meet the diagnostic criteria for fibromyalgia, but the muscle pain that I have (and have had since about seven years before making the menopausal transition) has many of the characteristics of fibromyalgia pain. So do the sleep disturbances that started soon after the muscle pain. Both of them crept in about twelve years ago. For a long stretch of time, hormone replacement therapy gave me excellent symptom relief. Then--it is obvious in hindsight--my increasingly struggling thyroid gland began to make its struggles known.
I have a LOT of experience with trying to find a physician with whom I could have a solid working relationship. My advice to you is to fire your physician, if it is at all possible, and try someone else. Every physician has a unique style of practicing medicine, in the same way that each of us sufferers has a unique style of being a patient. Nothing will change someone's style.
That goes double for giving a physician something to read. I am a social scientist, which gives me something in common with physicians. They depend on the medical research literature in their work; I depend on part of the social science research literature in mine. It is with real insight, in other words, that I say: If you give the test-results-obsessed doc something to read that he or she does not already agree with, he or she easily can find something in it to justify dismissing it, even if dismissing it is not fair.
I really feel for you, because I know that having hypothyroidism and fibromyalgia (or something resembling it) is a bit of a mess. Not that it cannot be straightened out; I am doing progressively better. It can be a challenge, though, when you have the symptoms that you describe, and I recognize several of them all too easily. Whatever you think is related to your thyroid replacement probably is, because I think that people's own inner sense of the cause-and-effect relations tends to be quite accurate. The majority of us are not hypochondriacs dreaming this stuff up; we know what our areas of malfunctioning are and what factors seem to be related to them.
You need an endocrinologist who believes this to be true and who will listen to you seriously and respectfully (AND who will listen to you rather than simply looking at lab results). What I have just said is especially true when you have the sort of "grab bag" of symptoms that both you and I have. It also is extra-true that we need someone who will know that he or she is only an endocrinologist, not a rheumatologist, and who will be happy to work collaboratively with us and with any other physicians we see.
I hope that you have a choice about continuing or not continuing to see Dr. "Show Me Numbers." During the lengthy process of assembling a team of physician-partners (a primary care doc, a gynecologist, a rheumatologist, and an endocrinologist), I have had a couple of experiences of hitting it off poorly with someone but going back several times, trying to build a reasonable relationship. I finally realized that finding a good patient/physician relationship (good for YOU) is like dating someone. Either it is going to work or it is not, and a physician whom someone else thinks the world of may be someone whom you cannot stand.
I do give someone two tries before I throw in the towel, which I think is a good idea. The first visit to a physician is a little like a first date, actually; it is not easy to tell what you will think of the person over time. What I have learned the hard way is that if someone's style of practicing medicine is not what I need, then going back for a third visit and beyond is simply futile.
Meanwhile, having an out-of-whack thyroid gland is enough to make you feel down all by itself. Then to have the sort of physician you describe is one more burden on your already overburdened morale. Good luck, and please send an update when you feel up to it.
Truly empathetically yours,
Jenny
My history in a nutshell: I do not meet the diagnostic criteria for fibromyalgia, but the muscle pain that I have (and have had since about seven years before making the menopausal transition) has many of the characteristics of fibromyalgia pain. So do the sleep disturbances that started soon after the muscle pain. Both of them crept in about twelve years ago. For a long stretch of time, hormone replacement therapy gave me excellent symptom relief. Then--it is obvious in hindsight--my increasingly struggling thyroid gland began to make its struggles known.
I have a LOT of experience with trying to find a physician with whom I could have a solid working relationship. My advice to you is to fire your physician, if it is at all possible, and try someone else. Every physician has a unique style of practicing medicine, in the same way that each of us sufferers has a unique style of being a patient. Nothing will change someone's style.
That goes double for giving a physician something to read. I am a social scientist, which gives me something in common with physicians. They depend on the medical research literature in their work; I depend on part of the social science research literature in mine. It is with real insight, in other words, that I say: If you give the test-results-obsessed doc something to read that he or she does not already agree with, he or she easily can find something in it to justify dismissing it, even if dismissing it is not fair.
I really feel for you, because I know that having hypothyroidism and fibromyalgia (or something resembling it) is a bit of a mess. Not that it cannot be straightened out; I am doing progressively better. It can be a challenge, though, when you have the symptoms that you describe, and I recognize several of them all too easily. Whatever you think is related to your thyroid replacement probably is, because I think that people's own inner sense of the cause-and-effect relations tends to be quite accurate. The majority of us are not hypochondriacs dreaming this stuff up; we know what our areas of malfunctioning are and what factors seem to be related to them.
You need an endocrinologist who believes this to be true and who will listen to you seriously and respectfully (AND who will listen to you rather than simply looking at lab results). What I have just said is especially true when you have the sort of "grab bag" of symptoms that both you and I have. It also is extra-true that we need someone who will know that he or she is only an endocrinologist, not a rheumatologist, and who will be happy to work collaboratively with us and with any other physicians we see.
I hope that you have a choice about continuing or not continuing to see Dr. "Show Me Numbers." During the lengthy process of assembling a team of physician-partners (a primary care doc, a gynecologist, a rheumatologist, and an endocrinologist), I have had a couple of experiences of hitting it off poorly with someone but going back several times, trying to build a reasonable relationship. I finally realized that finding a good patient/physician relationship (good for YOU) is like dating someone. Either it is going to work or it is not, and a physician whom someone else thinks the world of may be someone whom you cannot stand.
I do give someone two tries before I throw in the towel, which I think is a good idea. The first visit to a physician is a little like a first date, actually; it is not easy to tell what you will think of the person over time. What I have learned the hard way is that if someone's style of practicing medicine is not what I need, then going back for a third visit and beyond is simply futile.
Meanwhile, having an out-of-whack thyroid gland is enough to make you feel down all by itself. Then to have the sort of physician you describe is one more burden on your already overburdened morale. Good luck, and please send an update when you feel up to it.
Truly empathetically yours,
Jenny
It would be helpful to know your TSH and both FT levels with Labs reference range and the meds you are taking and dosage. You sound hyper to me. Whether med. inducted or you thyroid issue has progressed into an different thyroid condition, or other health conditions. Also you might benefit more if you are treated by an endo. who deals with a lot of thyroid patients per year - most deal more in diabetes.
Many other health conditions share a lot of thyroid symptoms, making it hard for doctor to make a correct diagnose and its a long tedious process of many test. But well worth in the end when a diagnose is finally made.
Below will get you started - hope the info will be helpful.
Adrenal fatigue/dysfunction symptoms are close to thyroid and are mistaken as such.
http://directory.obscureresearch.net/Thyroid_and_Adrenal
Signs and Symptoms: Adrenal Fatigue vs. Low Thyroid Function
http://www.drrind.com/scorecardmatrix.asp
Normal morning cortisol, followed by low levels throughout remainder of day indicate adrenal imbalance and low adrenal reserve. Overall, low adrenal cortisol production contributes to symptoms of fatigue, allergies, chemical sensitivity, and sugar craving. Low cortisol can also exacerbate symptoms of low thyroid.
http://www.chemicalbalance.com/adrenal_gland_test_results.htm
Increased levels of cortisol are found in Cushing's syndrome, excess thyroid (hyperthyroidism), obesity, ACTH-producing tumors, and high levels of stress.
Decreased levels of cortisol are found in Addison's disease, conditions of low thyroid, and hypopituitarism, in which pituitary activity is diminished.
http://findarticles.com/p/articles/mi_g2601/is_0003/ai_2601000373
CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome.The nonspecific nature of the name CFIDS is appropriate because while there are many symptoms, disabling fatigue and exhaustion are the most prominent and consistent. The rest have either headaches, muscle pain, joint pain, visual disturbances, emotional changes, memory loss, confusion, lymph node pain, or abdominal pain as the most severe symptom.
http://www.meactionuk.org.uk/Dr_David_Bells_Symptom_List.htm
Hormonal dysfunctionsuch as thyroid and adrenal disorders can cause CFS-like symptoms, as can several other known endocrine disorders.
http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Disease_associations
Fibromyalgia Symptoms short version of the "Risk Factors and Symptoms Checklist
http://thyroid.about.com/cs/fibromyalgiacfs/a/checklist.htm
The connection between mitral valve prolapse and thyroid conditions. Medical research has found that the prevalence of mitral valve prolapse is substantially greater in patients with autoimmune thyroid disorders such as Graves' Disease and Hashimoto's Thyroiditis.
Major Symptoms of MVP include:
http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&zu=http%3A%2F%2Fwww.thyroid-info.com%2Farticles%2Fmitral-valve-prolapse.htm
Good Luck!
Many other health conditions share a lot of thyroid symptoms, making it hard for doctor to make a correct diagnose and its a long tedious process of many test. But well worth in the end when a diagnose is finally made.
Below will get you started - hope the info will be helpful.
Adrenal fatigue/dysfunction symptoms are close to thyroid and are mistaken as such.
http://directory.obscureresearch.net/Thyroid_and_Adrenal
Signs and Symptoms: Adrenal Fatigue vs. Low Thyroid Function
http://www.drrind.com/scorecardmatrix.asp
Normal morning cortisol, followed by low levels throughout remainder of day indicate adrenal imbalance and low adrenal reserve. Overall, low adrenal cortisol production contributes to symptoms of fatigue, allergies, chemical sensitivity, and sugar craving. Low cortisol can also exacerbate symptoms of low thyroid.
http://www.chemicalbalance.com/adrenal_gland_test_results.htm
Increased levels of cortisol are found in Cushing's syndrome, excess thyroid (hyperthyroidism), obesity, ACTH-producing tumors, and high levels of stress.
Decreased levels of cortisol are found in Addison's disease, conditions of low thyroid, and hypopituitarism, in which pituitary activity is diminished.
http://findarticles.com/p/articles/mi_g2601/is_0003/ai_2601000373
CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome.The nonspecific nature of the name CFIDS is appropriate because while there are many symptoms, disabling fatigue and exhaustion are the most prominent and consistent. The rest have either headaches, muscle pain, joint pain, visual disturbances, emotional changes, memory loss, confusion, lymph node pain, or abdominal pain as the most severe symptom.
http://www.meactionuk.org.uk/Dr_David_Bells_Symptom_List.htm
Hormonal dysfunctionsuch as thyroid and adrenal disorders can cause CFS-like symptoms, as can several other known endocrine disorders.
http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Disease_associations
Fibromyalgia Symptoms short version of the "Risk Factors and Symptoms Checklist
http://thyroid.about.com/cs/fibromyalgiacfs/a/checklist.htm
The connection between mitral valve prolapse and thyroid conditions. Medical research has found that the prevalence of mitral valve prolapse is substantially greater in patients with autoimmune thyroid disorders such as Graves' Disease and Hashimoto's Thyroiditis.
Major Symptoms of MVP include:
http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&zu=http%3A%2F%2Fwww.thyroid-info.com%2Farticles%2Fmitral-valve-prolapse.htm
Good Luck!
GravesLady has raised a question about whether Cheryl's hypothyroidism may have progressed into another thyroid condition or other health condition. Another possibility: Cheryl's hypothyroidism is causing a mix of classic symptoms (such as dry skin) and paradoxical symptoms (such as restlessness and insomnia). When my endocrinologist diagnosed subclinical hypothyroidism (TSH level of 4.11 and free T4 in the normal range), the symptoms I was complaining about the most energetically were symptoms of hyperthyroidism. Despite my fear that levothyroxine would make parts of my difficult situation even worse, the medication has eased the paradoxical symptoms at the same pace at which it is easing the more usual symptoms of hypothyroidism.
The advice to be treated by an endo. who deals with a lot of thyroid patients is excellent. It will be good advice for Cheryl to put to use if she is able to fix what seems to be the major flaw in her medical care situation--that her current physician is not very good.
The advice to be treated by an endo. who deals with a lot of thyroid patients is excellent. It will be good advice for Cheryl to put to use if she is able to fix what seems to be the major flaw in her medical care situation--that her current physician is not very good.
P.S. Please pardon my cognitive fuzz. In a comment I just posted in which I reported the TSH level on which a diagnosis of subclinical hypothyroidism was made (in case anyone was curious), I failed to include the lab's reference range. The TSH value was 4.11 and the reference range was .32 - 5.0.
I am too ill to respond right now. But I greatly appreciate everyone's response. I will try later. I am sweating severely.
Thanks,
Cheryl
Thanks,
Cheryl
Cheryl, I am so sorry you are not feeling well. Don't rush to answer our post, feel better first. Then look through and study the info.
More info below.
Excessive sweating has many causes, including:
More info below.
Excessive sweating has many causes, including:
If I seem to be belaboring my point, I apologize. I just think it is important for Cheryl especially, but also for everyone who struggles with hormone-related symptoms, to know that it is possible to search high and low for a diagnosis that explains your symptoms and never find it. Why? Because a person can have symptoms that do not seem logically related to what is really wrong, and this not entirely logical pattern of symptoms is not in the medical literature (although it may be, someday).
In what Cheryl described, I see the same sort of "mixed bag" set of symptoms that I have had. What has helped me the most was finding a highly competent endocrinologist who likes to solve puzzles (rather than preferring to focus only on lab test results) and who listens to me very closely when I tell him what I am experiencing. He has been extremely careful to be sure he is not overlooking something in addition to hypothyroidism. Beyond that, he views my problem as an atypical case and then focuses on the "What can we do about it?" puzzle. That is the important puzzle, and do not think that it cannot be solved if your symptoms do not fit into a recognized diagnostic category.
I do not know whether it is a coincidence, Cheryl, that you have fibromyalgia and I have many of its symptoms, but I wonder if we share a tendency to have mixed bags of sometimes wack-o symptoms. If only I had a dollar for every time my rheumatologist has said, "I do not understand why this (fill in the blank with my symptom du jour) is happening to you." Now my endocrinologist has said the same thing more than once. What matters is that both of them, after they have shrugged their shoulders because they are baffled, put a shoulder to the wheel and push hard to figure out how to DO something to improve my well-being.
I want to echo GravesLady's thought: I am so sorry you are not feeling well. Take your time in responding to us...if you choose to respond at all. I know how difficult it can be just to hold daily life together without trying to do anything that is not absolutely necessary. I hope that you can draw some strength from our supportiveness and not feel any time pressure about sending a reply.
In what Cheryl described, I see the same sort of "mixed bag" set of symptoms that I have had. What has helped me the most was finding a highly competent endocrinologist who likes to solve puzzles (rather than preferring to focus only on lab test results) and who listens to me very closely when I tell him what I am experiencing. He has been extremely careful to be sure he is not overlooking something in addition to hypothyroidism. Beyond that, he views my problem as an atypical case and then focuses on the "What can we do about it?" puzzle. That is the important puzzle, and do not think that it cannot be solved if your symptoms do not fit into a recognized diagnostic category.
I do not know whether it is a coincidence, Cheryl, that you have fibromyalgia and I have many of its symptoms, but I wonder if we share a tendency to have mixed bags of sometimes wack-o symptoms. If only I had a dollar for every time my rheumatologist has said, "I do not understand why this (fill in the blank with my symptom du jour) is happening to you." Now my endocrinologist has said the same thing more than once. What matters is that both of them, after they have shrugged their shoulders because they are baffled, put a shoulder to the wheel and push hard to figure out how to DO something to improve my well-being.
I want to echo GravesLady's thought: I am so sorry you are not feeling well. Take your time in responding to us...if you choose to respond at all. I know how difficult it can be just to hold daily life together without trying to do anything that is not absolutely necessary. I hope that you can draw some strength from our supportiveness and not feel any time pressure about sending a reply.
Hi,
I have been meaning to respond, but things have been awful for me. I am going to respond briefly to everyone and try to cover all points.
I have gone through a few endos and because of incapatability, the one who is known in this area as good does not want to see me. She has access to all of my confidential records and I feel a bit violated by that. It is a system called the Providence Health Care System. I would like to write my whole story and have started to, but it is complex. I remember after I was diagnosed (54% uptake) with Graves', a "thyroidologist" at Oregon Health Science University told me that she didn't think I should do anything. I have been through about 4 endos at this point, and it would take a lot for me to explain why they didn't work out for me. I am afraid at this point that I don't know how to find one. Furthermore, I need a referral to get one, and getting my PCP to do that is so much fun. I did find a possibility of a GP that was recommended on another site as being open-minded and good for thyroid disease. Getting someone to take Medicare is a hurdle, but this one does.
My symptoms are confusing, but what I do know is that until I became severely ill with Graves', the FMS was in remission for four years. I know it might seem that I am hyper, because of my weight loss and lack of appetite and some other symptoms (palps). But when I first became hypo after RAI, I started losing my appetite and losing weight. I finally hit about 94 pounds. My endo didn't care and said I was lucky that I wouldn't have to lose weight. My GI doctor disagreed and prescribed Marinol. I never could tolerate it, but no other nausea med worked and Phenergan added to the movement, especially the doses they had me on (150 mg/daily). I settled on a small dose of Marinol (2.5 mg). I even have problem with that. It seems to be related to faster heart beat. I have been weaning off of it. I remember when I first went on it, and my GI doctor said if you can't afford it, do what you have to do. She told me that she couldn't say anymore, she told me at the time without risking her license. I became bothered by being on Marinol and finally tried a low dose of Remeron hoping it would help sleep and appetite. It did briefly, but now it is adding on to my RLS and its affects are gone. I am down to Marinol every other day, at least. Sometimes, I go two days without it, but I couldn't stand how I was feeling last night and decided to take it.
I am so down that there is no way for me to tell you how down I am. I feel like my life is over. I have been ill with this for so long and the docs keep telling me to "hang in there." I don't know how long I can anymore. I am housebound from my illness. I get breaks from time to time, and it is in this time that I try to make up for all the lost time. My kids are growing up and I am a mess. I went through so much to get pregnant, because my husband is a survivor of testicular cancer. I went through $20,000 worth of fertility procedures. They missed the thyroid problem.
I plan to post my labs, although they were within the "target" range, I believe. It doesn't explain why the symptomology is getting worse. I believe I am going hypo again. My breasts are tender and I am producing milk. This is my first sign.
I don't know if I answered everything. I have been a mess for the last few days. But last night was tormentuous. I was moving incessantly. I was sweating so badly and I couldn't dry off. It went on for about 3-4 hours. I didn't sleep until passed 3 AM and startled awake at 7:30 AM or so. I had to wear earplugs for several hours because of sensitivity to noise. It is bad enough that I have to do this at night, but to do it during the day, is hard to handle. I use a noisemaker in my room that is so loud that I can't believe I can hear anything through it.
I have had my ferritin checked and it was 49. I am taking Iron, because it is recommended under 50 when RLS presents. Plus, I have heard low ferritin can affect how thyroid meds work. As far as cortisol, no doctor including Endos believe it is possible. They have run tests on me and say I am fine. I think they should see a videotape of my life and it is far from fine.
I cannot remember who is the social scientist, but I agree my doc isn't likely to change the way she is. I guess I have given up on life to a certain degree. I have been able to convince her of certain things, but not without consequence to my health. I need to fire her, but I can't until I find a replacement willing to treat me and prescribe what I am on. This is challenging.
I am/was a sociology major until my illness took me down. I have to say that I am at one of the lowest points in my life. I am not sure that life is worth living any longer.
I do appreciate the time everyone took to respond to me and will try to post labs when I have them in hand.
Thanks,
Cheryl
I have been meaning to respond, but things have been awful for me. I am going to respond briefly to everyone and try to cover all points.
I have gone through a few endos and because of incapatability, the one who is known in this area as good does not want to see me. She has access to all of my confidential records and I feel a bit violated by that. It is a system called the Providence Health Care System. I would like to write my whole story and have started to, but it is complex. I remember after I was diagnosed (54% uptake) with Graves', a "thyroidologist" at Oregon Health Science University told me that she didn't think I should do anything. I have been through about 4 endos at this point, and it would take a lot for me to explain why they didn't work out for me. I am afraid at this point that I don't know how to find one. Furthermore, I need a referral to get one, and getting my PCP to do that is so much fun. I did find a possibility of a GP that was recommended on another site as being open-minded and good for thyroid disease. Getting someone to take Medicare is a hurdle, but this one does.
My symptoms are confusing, but what I do know is that until I became severely ill with Graves', the FMS was in remission for four years. I know it might seem that I am hyper, because of my weight loss and lack of appetite and some other symptoms (palps). But when I first became hypo after RAI, I started losing my appetite and losing weight. I finally hit about 94 pounds. My endo didn't care and said I was lucky that I wouldn't have to lose weight. My GI doctor disagreed and prescribed Marinol. I never could tolerate it, but no other nausea med worked and Phenergan added to the movement, especially the doses they had me on (150 mg/daily). I settled on a small dose of Marinol (2.5 mg). I even have problem with that. It seems to be related to faster heart beat. I have been weaning off of it. I remember when I first went on it, and my GI doctor said if you can't afford it, do what you have to do. She told me that she couldn't say anymore, she told me at the time without risking her license. I became bothered by being on Marinol and finally tried a low dose of Remeron hoping it would help sleep and appetite. It did briefly, but now it is adding on to my RLS and its affects are gone. I am down to Marinol every other day, at least. Sometimes, I go two days without it, but I couldn't stand how I was feeling last night and decided to take it.
I am so down that there is no way for me to tell you how down I am. I feel like my life is over. I have been ill with this for so long and the docs keep telling me to "hang in there." I don't know how long I can anymore. I am housebound from my illness. I get breaks from time to time, and it is in this time that I try to make up for all the lost time. My kids are growing up and I am a mess. I went through so much to get pregnant, because my husband is a survivor of testicular cancer. I went through $20,000 worth of fertility procedures. They missed the thyroid problem.
I plan to post my labs, although they were within the "target" range, I believe. It doesn't explain why the symptomology is getting worse. I believe I am going hypo again. My breasts are tender and I am producing milk. This is my first sign.
I don't know if I answered everything. I have been a mess for the last few days. But last night was tormentuous. I was moving incessantly. I was sweating so badly and I couldn't dry off. It went on for about 3-4 hours. I didn't sleep until passed 3 AM and startled awake at 7:30 AM or so. I had to wear earplugs for several hours because of sensitivity to noise. It is bad enough that I have to do this at night, but to do it during the day, is hard to handle. I use a noisemaker in my room that is so loud that I can't believe I can hear anything through it.
I have had my ferritin checked and it was 49. I am taking Iron, because it is recommended under 50 when RLS presents. Plus, I have heard low ferritin can affect how thyroid meds work. As far as cortisol, no doctor including Endos believe it is possible. They have run tests on me and say I am fine. I think they should see a videotape of my life and it is far from fine.
I cannot remember who is the social scientist, but I agree my doc isn't likely to change the way she is. I guess I have given up on life to a certain degree. I have been able to convince her of certain things, but not without consequence to my health. I need to fire her, but I can't until I find a replacement willing to treat me and prescribe what I am on. This is challenging.
I am/was a sociology major until my illness took me down. I have to say that I am at one of the lowest points in my life. I am not sure that life is worth living any longer.
I do appreciate the time everyone took to respond to me and will try to post labs when I have them in hand.
Thanks,
Cheryl
I will examine the info on sweating. I never had this symptom until I became severely ill with thyroid disease. Usually, when my meds are off, it starts again. But my brain is a fog. It is so much to sift through and I fear I have lost much of my cognitive ability and emotional stability.
Until next,
Cheryl
Until next,
Cheryl
Don't ever give up Cheryl! I know at times it hard but there is an answer and treatment out there someplace. You just have to find it along with a competent doctor even if you have to travel to another state. I know of some who did that for the first diagnose then was treated by phone from home thereafter. You deserver the best, we all do. Not knowing your levels but you sound like you might need another RAI because of the hyper symptoms. The weight lose alone. That is what got me into doctors and treatment for Graves' was all the weight lose, like you I lost to under a 100 lbs and couldn't stop losing. But RAI stopped the weight loss and saved my life because I know I would be dead way before now.
Insist that your doctor recommend you to a competent doctor, scream, holler, have a tantrum, whatever it takes. Its your money, your body and your health.
Keep us posted, Good Luck and Feel Better Soon!
Insist that your doctor recommend you to a competent doctor, scream, holler, have a tantrum, whatever it takes. Its your money, your body and your health.
Keep us posted, Good Luck and Feel Better Soon!
Hi,
I was getting off the computer but thought I would check for a response. I was given a large dose of RAI, because my doctor didn't even give a dose. The aim was to destroy. It has been confirmed that I have no thyroid by many. I remember it took so long after RAI to hypo. When I did, my TSH was 140. I had the same symptoms then as I do now.
I have even gone hypo within the last year and had the same symptoms I am listing. I know it is strange, but my body has always been weird. My TSH was between 1 and 2 off memory last time. Free T4 was 1.13. Not sure about Free T3. In some ways, I wish it was that tissue was left behind, but I doubt it because I have gone too hypo even with meds.
Anyway, when I have concrete labs, I will let you know. I went to Mayo, because no one believed me in Oregon. $1,300 for travel/lodging for a $30 test. And then, they didn't believe the test. I came back here and even with a 54% uptake, the docs didn't take it seriously and one suggested doing nothing. I wish I could have let her feel how I have felt for almost 7 years now. I am trying to hang on, but my life seems so useless. I don't seem all that important in my kids' lives. I feel like a total failure and have become almost totally housebound. I don't have a lot of money. My spouse hasn't worked in over 3 years because of my inability to care for my own children. I feel so guilty and so broken down.
Thanks for caring though.
Cheryl
I was getting off the computer but thought I would check for a response. I was given a large dose of RAI, because my doctor didn't even give a dose. The aim was to destroy. It has been confirmed that I have no thyroid by many. I remember it took so long after RAI to hypo. When I did, my TSH was 140. I had the same symptoms then as I do now.
I have even gone hypo within the last year and had the same symptoms I am listing. I know it is strange, but my body has always been weird. My TSH was between 1 and 2 off memory last time. Free T4 was 1.13. Not sure about Free T3. In some ways, I wish it was that tissue was left behind, but I doubt it because I have gone too hypo even with meds.
Anyway, when I have concrete labs, I will let you know. I went to Mayo, because no one believed me in Oregon. $1,300 for travel/lodging for a $30 test. And then, they didn't believe the test. I came back here and even with a 54% uptake, the docs didn't take it seriously and one suggested doing nothing. I wish I could have let her feel how I have felt for almost 7 years now. I am trying to hang on, but my life seems so useless. I don't seem all that important in my kids' lives. I feel like a total failure and have become almost totally housebound. I don't have a lot of money. My spouse hasn't worked in over 3 years because of my inability to care for my own children. I feel so guilty and so broken down.
Thanks for caring though.
Cheryl
Dear Cheryl,
As I hope you can tell, you have several people sending you as much support as we can send electronically from a distance...not to mention sending you a LOT of caring. As often seems to be the case, GravesLady said it best when she said "Don't ever give up!" It is SO, so difficult, though, to need to fight hard on your own behalf at a time when you really do not have the physical or emotional strength to fight.
I hope that your husband not only knows how guilty you feel, I hope he is being very supportive of you. The person who is taking up the slack for someone who is struggling with a thyroid problem needs to know HOW bad we, the struggler, feel about the situation, and how much that guilt adds to our physical struggles, which are almost too much to cope with even without having something added to the load.
I have a lot in common with you, but I have only about one-tenth as much difficulty (in every area) as you do. I am the social scientist, by the way, and I work for a wee-tiny nonprofit research organization. My boss, who is also a wonderful colleague, and I are the only researchers. In terms of our workload, we cannot afford to have one of us be unwell to the extent that I have been. Although I have struggled to hold up my end of the load, I know that my boss has worked harder than I wanted her to, just to take care of the part of the load that I simply could not carry.
You can say "I am sorry" to the person who is taking up your slack, and the person can say, "It is all right; I understand," but still, the guilt is enormous. If you think it will help your husband to understand how important it is for him to be super-supportive of you right now, please show him my comments. Morale is a major problem, especially because I am certain that you are 100% right in saying that you have lost much of your cognitive ability and emotional stability. I am speaking as someone who never before knew what it was like to have her moods be affected by hormones, as someone who could keep her brain operating normally even when not feeling well, as someone who is easy-going and even-tempered and emotionally resilient and all such good stuff. I have been FLOORED to see the extent to which hypothyroidism (and my case is mild) can mess up both the emotional and cognitive parts of your mind in a variety of ways.
Let me pause here long enough to say to jenipeni that I do not think any of us should say "sorry" for commenting at length (as I am in the process of doing). If you have a lot to say that is important (and jenipeni certainly did), it takes a lot of words. If anyone does not want to read through a lengthy set of comments, then surely the person knows how to use the computer's "back" button or else can skim rather than reading word for word. I am sure that Cheryl is not complaining about our lengthy comments, or at least I hope not! I hope she is seeing every word as part of the life-line we are trying to throw to her as she flounders.
Some comments about physicians: Cheryl, the reason each of 4 endos did not work out for you does not matter at all, because I am sure it would make perfect sense to all of us who are caring about you from a distance. I am severely annoyed by the term "doctor shopping." Probably there are people in the world who are so picky that no physician is good enough for them, but I would bet that they are in the minority. For the rest of us, if we go from one physician's office to another, it is because objectively speaking, really good doctors (interpersonally as well as clinically, and I think that a physician has to be good in both areas in order to be competent) are in painfully short supply.
I am glad you have found the possibility of a GP who is open-minded and good for thyroid disease. It seems as if anyone would be an improvement over what you are putting up with now. If this particular GP has a style of practicing medicine that includes listening closely to the patient and believing the patient, then you would be gaining a lot. A physician who has enough humility to do that often is someone who will seek advice from colleagues if your problem exceeds his or her expertise.
I have a special degree of empathy because some of my more vexing symptoms over time have come from what probably is a mild case of FMS. Just because I do not meet the criteria for being given the diagnosis, I and my rheumatologist see enough similarities to think that FMS is exactly what I have. Certainly, I know just what it can be like to seek medical care when, as is true of you and me both, you have a body that is weird. When the mechanisms underlying FMS are being debated about and researched, but are not yet understood, it is an odd and thoroughly infuriating form of arrogance when a physician does NOT to take our accounts of what we are experiencing seriously.
As for having a physician tell you that you are fine when your very reason for being there in the first place is that you are very far away from being anything remotely resembling fine--what could be any more crazy-making than that? Do physicians of that sort think that they can simply will you into whatever physical condition the test results say to them you should be in? The most mind-boggling story I have heard was from a woman who had a problem inside her eye. The ophthalmologists who treated her were not depending on her reports of symptoms, they were able to look straight at the problem. She had a visit with an eye doc who dilated her pupil, looked into her eye at the problem, and actually said, "This cannot be happening."
As you know all too well, you need a very different kind of physician. I can tell that money is a major problem for you, but as GravesLady pointed out, there can be some non-traditional arrangements that are financially manageable and provide the help that a person needs. There are physicians who know that FMS often behaves oddly (such as yours going into remission for four years), that FMS can interact with a thyroid problem in odd and challenging ways, and that test results sometimes do not explain as much as everyone wishes they would. In addition, there actually are physicians out there who are not money-grabbers and who want so much to help that they will make themselves affordable. How to FIND that person, however, is the frustrating question. I remember being reduced to tears more than once, simply by the search, and I had a little more financial freedom than you do.
One more comment about bodily weirdness before I forget: Do not ever let any physician tell you that a certain symptom cannot be hypothyroidism. I am still in the process of easing up to whatever the right dosage of levothyroxine turns out to be, but my last increase--to 62.5 mcg.--has moved me closer to being the person I used to be than any other increase has done. One of the improvements has been in sleep disturbances of the kind that are typical of hyperthyroidism, not hypo. While you were having a tormentuous night last night, I was enjoying the latest in several of the best nights I have had in a long, long while. I figured out soon after starting to take levothyroxine that there was no need to take it first thing in the morning, because it does not keep me awake at bedtime. I also realized that within an hour of taking levothyroxine, it soothes the jittery feeling that I eventually realized had something to do with my thyroid gland's struggles. In addition, the quality of my sleep is improved if I time my levothyroxine dose for 5:00 P.M.
Let me say clearly that I am NOT suggesting any help for your situation in what I have experienced. I am just giving you some concrete evidence that any physician who says "This cannot be happening," even if it is on the basis of your reports rather than on the basis of objective evidence, is a physician who does not understand how weird some people's bodies can be. If you think that the physician might be teachable, then you might show him or her the preceding paragraph of my post. It was a very scary decision to begin taking levothyroxine, because I was afraid it would make my sleeping difficulties even worse. I know it is not my imagination that hypothyroidism turned out to be having a paradoxical effect on me (my endocrinologist agrees).
The person who HAS suggested something possibly helpful about your situation is jenipeni. I would advise your taking her technical explanation with you when you see what we all hope will be a new physician. Ask if the explanation makes any sense at all, and be very hesitant to accept "No" for an answer. You are at a point at which a compassionate physician ought to be willing to look into any possibility no matter what.
Another piece of advice: Conceal the identity of the person who provided the idea, by which I mean that just to be on the safe side, you should not let a physician know that the idea came from a "mere" nursing student. Unfortunately, there is an inflated-ego problem all over the place in the medical field, and it is wise to avoid it rather than tripping over it.
The same problem is widespread among people with Ph.D.s, by the way; students are given all sorts of subtle encouragements during graduate training to think that they are in the process of becoming really big deals (rather than the reality, which is that they simply are going through trade school, and the very same thing can be said about medical school). In my training, an occasional encouragement to have an expanded ego was so non-subtle that it took my breath away. Even at that, people with Ph.D.s are a step below physicians in general arrogance. It is difficult for someone to avoid picking up at least a trace of ego swelling during the medical training process, so it is a problem to be aware of and try to avoid.
That is true ten times over when you are so down that there is no way for you to tell us how down you really are. You do not need even one more tiny little stressor, such as having a physician reject what might be an incredibly good insight, just because it did not come from another physician.
By the way, a major factor in my avoiding any ego swelling during my graduate training (in addition to maturity, since I was 40 when I started graduate school) was having once been a nurse's aide, which meant that I knew what working hard was REALLY like--not like the mamby-pamby supposedly hard work of academic endeavors. In my days as a nurse's aide on a general medical unit, I saw the way a major illness can be destructive in two directions at once--it damages the morale of the person who is ill and damages family relationships at the same time. My heart went out to you when I read your comment that you don't seem all that important in your kids' lives. Do you have access to family counseling on a sliding scale or free-of-charge basis in the area in which you live? It could be strengthening for all of you, if it is a possibility.
Furthermore, do you have access to individual counseling, again on an affordable basis? I know that psychologists (and counselors with other kinds of training) know how much a person can use professional support when she is going through the sort of medical-situation stress that you are going through--miserable symptoms, a mediocre physician, no answers, no relief for you or your family.... It is a huge load on your emotions, even if they are not messed up by your thyroid troubles, and I would bet that they are.
Please stay in touch with us, even if it is only with the most brief of updates. As GravesLady said, we are wishing you good luck, and as jenipeni said, we are thinking of you.
With caring and empathy,
Jenny
As I hope you can tell, you have several people sending you as much support as we can send electronically from a distance...not to mention sending you a LOT of caring. As often seems to be the case, GravesLady said it best when she said "Don't ever give up!" It is SO, so difficult, though, to need to fight hard on your own behalf at a time when you really do not have the physical or emotional strength to fight.
I hope that your husband not only knows how guilty you feel, I hope he is being very supportive of you. The person who is taking up the slack for someone who is struggling with a thyroid problem needs to know HOW bad we, the struggler, feel about the situation, and how much that guilt adds to our physical struggles, which are almost too much to cope with even without having something added to the load.
I have a lot in common with you, but I have only about one-tenth as much difficulty (in every area) as you do. I am the social scientist, by the way, and I work for a wee-tiny nonprofit research organization. My boss, who is also a wonderful colleague, and I are the only researchers. In terms of our workload, we cannot afford to have one of us be unwell to the extent that I have been. Although I have struggled to hold up my end of the load, I know that my boss has worked harder than I wanted her to, just to take care of the part of the load that I simply could not carry.
You can say "I am sorry" to the person who is taking up your slack, and the person can say, "It is all right; I understand," but still, the guilt is enormous. If you think it will help your husband to understand how important it is for him to be super-supportive of you right now, please show him my comments. Morale is a major problem, especially because I am certain that you are 100% right in saying that you have lost much of your cognitive ability and emotional stability. I am speaking as someone who never before knew what it was like to have her moods be affected by hormones, as someone who could keep her brain operating normally even when not feeling well, as someone who is easy-going and even-tempered and emotionally resilient and all such good stuff. I have been FLOORED to see the extent to which hypothyroidism (and my case is mild) can mess up both the emotional and cognitive parts of your mind in a variety of ways.
Let me pause here long enough to say to jenipeni that I do not think any of us should say "sorry" for commenting at length (as I am in the process of doing). If you have a lot to say that is important (and jenipeni certainly did), it takes a lot of words. If anyone does not want to read through a lengthy set of comments, then surely the person knows how to use the computer's "back" button or else can skim rather than reading word for word. I am sure that Cheryl is not complaining about our lengthy comments, or at least I hope not! I hope she is seeing every word as part of the life-line we are trying to throw to her as she flounders.
Some comments about physicians: Cheryl, the reason each of 4 endos did not work out for you does not matter at all, because I am sure it would make perfect sense to all of us who are caring about you from a distance. I am severely annoyed by the term "doctor shopping." Probably there are people in the world who are so picky that no physician is good enough for them, but I would bet that they are in the minority. For the rest of us, if we go from one physician's office to another, it is because objectively speaking, really good doctors (interpersonally as well as clinically, and I think that a physician has to be good in both areas in order to be competent) are in painfully short supply.
I am glad you have found the possibility of a GP who is open-minded and good for thyroid disease. It seems as if anyone would be an improvement over what you are putting up with now. If this particular GP has a style of practicing medicine that includes listening closely to the patient and believing the patient, then you would be gaining a lot. A physician who has enough humility to do that often is someone who will seek advice from colleagues if your problem exceeds his or her expertise.
I have a special degree of empathy because some of my more vexing symptoms over time have come from what probably is a mild case of FMS. Just because I do not meet the criteria for being given the diagnosis, I and my rheumatologist see enough similarities to think that FMS is exactly what I have. Certainly, I know just what it can be like to seek medical care when, as is true of you and me both, you have a body that is weird. When the mechanisms underlying FMS are being debated about and researched, but are not yet understood, it is an odd and thoroughly infuriating form of arrogance when a physician does NOT to take our accounts of what we are experiencing seriously.
As for having a physician tell you that you are fine when your very reason for being there in the first place is that you are very far away from being anything remotely resembling fine--what could be any more crazy-making than that? Do physicians of that sort think that they can simply will you into whatever physical condition the test results say to them you should be in? The most mind-boggling story I have heard was from a woman who had a problem inside her eye. The ophthalmologists who treated her were not depending on her reports of symptoms, they were able to look straight at the problem. She had a visit with an eye doc who dilated her pupil, looked into her eye at the problem, and actually said, "This cannot be happening."
As you know all too well, you need a very different kind of physician. I can tell that money is a major problem for you, but as GravesLady pointed out, there can be some non-traditional arrangements that are financially manageable and provide the help that a person needs. There are physicians who know that FMS often behaves oddly (such as yours going into remission for four years), that FMS can interact with a thyroid problem in odd and challenging ways, and that test results sometimes do not explain as much as everyone wishes they would. In addition, there actually are physicians out there who are not money-grabbers and who want so much to help that they will make themselves affordable. How to FIND that person, however, is the frustrating question. I remember being reduced to tears more than once, simply by the search, and I had a little more financial freedom than you do.
One more comment about bodily weirdness before I forget: Do not ever let any physician tell you that a certain symptom cannot be hypothyroidism. I am still in the process of easing up to whatever the right dosage of levothyroxine turns out to be, but my last increase--to 62.5 mcg.--has moved me closer to being the person I used to be than any other increase has done. One of the improvements has been in sleep disturbances of the kind that are typical of hyperthyroidism, not hypo. While you were having a tormentuous night last night, I was enjoying the latest in several of the best nights I have had in a long, long while. I figured out soon after starting to take levothyroxine that there was no need to take it first thing in the morning, because it does not keep me awake at bedtime. I also realized that within an hour of taking levothyroxine, it soothes the jittery feeling that I eventually realized had something to do with my thyroid gland's struggles. In addition, the quality of my sleep is improved if I time my levothyroxine dose for 5:00 P.M.
Let me say clearly that I am NOT suggesting any help for your situation in what I have experienced. I am just giving you some concrete evidence that any physician who says "This cannot be happening," even if it is on the basis of your reports rather than on the basis of objective evidence, is a physician who does not understand how weird some people's bodies can be. If you think that the physician might be teachable, then you might show him or her the preceding paragraph of my post. It was a very scary decision to begin taking levothyroxine, because I was afraid it would make my sleeping difficulties even worse. I know it is not my imagination that hypothyroidism turned out to be having a paradoxical effect on me (my endocrinologist agrees).
The person who HAS suggested something possibly helpful about your situation is jenipeni. I would advise your taking her technical explanation with you when you see what we all hope will be a new physician. Ask if the explanation makes any sense at all, and be very hesitant to accept "No" for an answer. You are at a point at which a compassionate physician ought to be willing to look into any possibility no matter what.
Another piece of advice: Conceal the identity of the person who provided the idea, by which I mean that just to be on the safe side, you should not let a physician know that the idea came from a "mere" nursing student. Unfortunately, there is an inflated-ego problem all over the place in the medical field, and it is wise to avoid it rather than tripping over it.
The same problem is widespread among people with Ph.D.s, by the way; students are given all sorts of subtle encouragements during graduate training to think that they are in the process of becoming really big deals (rather than the reality, which is that they simply are going through trade school, and the very same thing can be said about medical school). In my training, an occasional encouragement to have an expanded ego was so non-subtle that it took my breath away. Even at that, people with Ph.D.s are a step below physicians in general arrogance. It is difficult for someone to avoid picking up at least a trace of ego swelling during the medical training process, so it is a problem to be aware of and try to avoid.
That is true ten times over when you are so down that there is no way for you to tell us how down you really are. You do not need even one more tiny little stressor, such as having a physician reject what might be an incredibly good insight, just because it did not come from another physician.
By the way, a major factor in my avoiding any ego swelling during my graduate training (in addition to maturity, since I was 40 when I started graduate school) was having once been a nurse's aide, which meant that I knew what working hard was REALLY like--not like the mamby-pamby supposedly hard work of academic endeavors. In my days as a nurse's aide on a general medical unit, I saw the way a major illness can be destructive in two directions at once--it damages the morale of the person who is ill and damages family relationships at the same time. My heart went out to you when I read your comment that you don't seem all that important in your kids' lives. Do you have access to family counseling on a sliding scale or free-of-charge basis in the area in which you live? It could be strengthening for all of you, if it is a possibility.
Furthermore, do you have access to individual counseling, again on an affordable basis? I know that psychologists (and counselors with other kinds of training) know how much a person can use professional support when she is going through the sort of medical-situation stress that you are going through--miserable symptoms, a mediocre physician, no answers, no relief for you or your family.... It is a huge load on your emotions, even if they are not messed up by your thyroid troubles, and I would bet that they are.
Please stay in touch with us, even if it is only with the most brief of updates. As GravesLady said, we are wishing you good luck, and as jenipeni said, we are thinking of you.
With caring and empathy,
Jenny
Hi,
I am taking in the information and am going to respond shortly. I found it informative and was also crying when I read some of it, because it is touching that others care not because of what I read. I am not bothered by the length of writing. I am actually writing a history that will be quite lengthy and I hope it will be alright to post it. I think it is necessary for others to know what has happened to be able to offer help or moral support. I can tell you guys care though and for that, I am grateful and also emotional.
Thanks,
Cheryl
I am taking in the information and am going to respond shortly. I found it informative and was also crying when I read some of it, because it is touching that others care not because of what I read. I am not bothered by the length of writing. I am actually writing a history that will be quite lengthy and I hope it will be alright to post it. I think it is necessary for others to know what has happened to be able to offer help or moral support. I can tell you guys care though and for that, I am grateful and also emotional.
Thanks,
Cheryl
Jenny, I just wanted to say that that was one of the most insightful posts I have ever read. I certainly hope that not only Cheryl, but everyone will take the time to read every word and not just skim over the content. Kathy
Kathy, thank you SO much for your comments! Although I am feeling substantially better than I was for quite a long time, my morale is still vulnerable enough to welcome a boost of the sort that your comments gave me. There are people in the world (and I have crossed paths with them every so often) who have a "Can't you say it in fewer words?" attitude. Sometimes the answer is "No." When it is my intent only to be helpful, caring, and supportive, it means a lot to me to know that I succeeded.
Cheryl, of COURSE it will be alright for you to post a lengthy history! I am sure I can speak for your other allies when I say that I look forward to it. Sometimes there is a detail that helps other people to be helpful, but if nothing else, it can help hold your sanity together to get it all off your chest and know that people care enough about you to want to read it all. You are right, too; moral support can be provided more effectively, often, if all relevant details are known.
Apart from my medical condition, my work takes me into the area of people who vocationally provide help and support to other people. I am fascinated by the almost magical morale-boosting power there can be in telling someone what you are experiencing and getting a response that says, essentially, "What you are experiencing is entirely reasonable."
Although everyone who is going through something intensely stressful is someone who needs that sort of feedback, I think that when you are facing 1) the craziness with which some physicians practice medicine, 2) the enormous difficulty of finding a physician who practices in a rational way, 3) the added challenge of getting what you need when your last name is not Rockefeller, AND you feel thoroughly crummy and unable to function at the same time, then being told that "Yup, everything you say makes perfect sense" is especially important. I have been the grateful beneficiary of that sort of feedback many. I am glad that I now can provide it to you, Cheryl.
I am logging off for the evening, but I look forward to seeing what you have written tomorrow...or whenever it is manageable. How well I know that your sorts of problems can dictate to you whether you can or cannot follow through with whatever your plans had been for the day. So if you do not get back to us as soon as you had planned to, know that we still will be "out here" thinking about you and sending caring thoughts your way.
Cheryl, of COURSE it will be alright for you to post a lengthy history! I am sure I can speak for your other allies when I say that I look forward to it. Sometimes there is a detail that helps other people to be helpful, but if nothing else, it can help hold your sanity together to get it all off your chest and know that people care enough about you to want to read it all. You are right, too; moral support can be provided more effectively, often, if all relevant details are known.
Apart from my medical condition, my work takes me into the area of people who vocationally provide help and support to other people. I am fascinated by the almost magical morale-boosting power there can be in telling someone what you are experiencing and getting a response that says, essentially, "What you are experiencing is entirely reasonable."
Although everyone who is going through something intensely stressful is someone who needs that sort of feedback, I think that when you are facing 1) the craziness with which some physicians practice medicine, 2) the enormous difficulty of finding a physician who practices in a rational way, 3) the added challenge of getting what you need when your last name is not Rockefeller, AND you feel thoroughly crummy and unable to function at the same time, then being told that "Yup, everything you say makes perfect sense" is especially important. I have been the grateful beneficiary of that sort of feedback many. I am glad that I now can provide it to you, Cheryl.
I am logging off for the evening, but I look forward to seeing what you have written tomorrow...or whenever it is manageable. How well I know that your sorts of problems can dictate to you whether you can or cannot follow through with whatever your plans had been for the day. So if you do not get back to us as soon as you had planned to, know that we still will be "out here" thinking about you and sending caring thoughts your way.
I am in the works of a full history, but the stress and sweats have placed me in a vulnerable condition. However, I want to respond the thoughtful posts and informative posts that have been sent my way. It is so hard when people tell me stuff that invalidates my feelings and you guys have been very validating. I have had some other boards treat me as though I was "being a victim" or have told me to just "take my power back." Essentially, they have neglected to look at my history of abuse primarily in the formative years that has led to a lack of self-esteem and the illnesses that has been persisting for years. So, I want to thank all of you for being so caring.
I was fascinated by the information abou galactorrhoea, and I do have a limited comprehension of the endocrine system. Early on, I asked for a prolactin level to be run after noticing the discharge and lumps in the breast in an self-exam in the bath one night. The tests were run and I was told that my prolactin levels were normal. The also ran some tests to check the pituitary gland and adrenal function (24 hour urine test), but nothing came back out of the "normal" range. However, I typed in galactorrhoea to research a bit. I was fascinated that I am experiencing many of the symptoms associated with this disorder. A long time ago, I expressed the possibility to my last endo that I might have a pituitary tumor because of the breast leakage. He said that it was possible that the gland was enlarged or had a tumor on it, but that with adequate thyroid replacement, the leakage would stop. To some extent, this has been true. After I was no longer "hypo" according to the numbers, the leaking stopped. Incidently, I only noticed the leaking after doing the last part of the exam to check for discharge. It looked like it did when I was breast-feeding and felt the same (breast tender).
I have increased my thyroxine dose slightly, because these symtoms are usually associated with hypo for me despite the TSH being between 1 and 2. I am bothered that an MRI of the brain has not been run and I have asked for one before. I was told that it is normal for a lot of women to have breast discharge and mentions of "wet nurses" were made. But what bothers me is that the breast leakage is not without symptomology. If I felt fine and there was no blood or abnormality on mammograms/ultrasounds, that would be one thing. But I do not feel well and so I do not fall into the category of a little discharge is okay. And it is just a little. After I first time I saw discharge, I called my OB's office after hours. I was freaked out because of the lumps. The OB on call was as concerned and in fact, had the office call me to set up an appt. to be seen immediately. Then, a mammogram was ordered. Because my mom had breast cancer, things progressed rapidly and I was scared. The place I get my X-rays, etc. is well known for being good. They ran a mammogram with 6 views--digital mammography. Nothing was noted but the radiologist coded it as "suspicious" so an ultrasound would be paid for by Medicare. By the way, I am 36, although I refused to celebrate unless there were only 35 candles on the cake last year, claiming that I wanted some years back for what I have lost. My request was granted. The ultrasound revealed something in one of the ducts. I was immediately sent for a surgical consult, with a doctor that I do have confidence in. He is very humble, and that is rare to find especially when the doctor was trained at John's Hopkins University. I found out about him through other people in the medical field. He turned down a high position at John's Hopkins University, because he wanted to work with patients. He could have made a lot more money there than in private practice. So, let's just say that I respect him and he is so nice to me. He never passes judgment. Again, I went into see him because of the discharge. He was concerned and immediately ordered an US and mammogram. He also wanted to do three tests to check for the presence of blood in the milk. I did the tests and took them back to the office. I am awaiting the results, because I only took the tests in on Friday. Previous results were negative for blood.
But I am going to ask him if he will order an MRI of the brain to look for pituitary tumors. I wondered if the adrenal glands can also be examined in such a way. I will ask about the ACTH. I had this 24 hour urine test done to check for many different hormones, including but not limited to the adrenal hormones. Everything was "normal." But this is what I think for what it is worth. I think the point brought up about galactorrhoea is very valid and perhaps the tests are not showing it. Perhaps, the docs need to look deeper. I know that hypothyroidism can also lead to breast leakage. The endocrine system is all link in a very interesting way. I wish my brain could take stuff in like it used to. But I am afraid that my childhood lead to a lack of confidence and mixed with the illness, it has made me unable and afraid to look at complex information. It is as though I become panicked when looking at a science book like Biology, Anatomy and Physiology, etc. I can read Sociology, but my self-esteem is absent. That said, I braved it and looked into the info that was pointed out about galactorrhoea, because I need to know if something else could be being overlooked. And, believe me, I appreciate the information and I do not feel like it was too long. No info is too long if it can help or is intended to support someone in any way as far as I am concerned. You need not apologize as you can see how long my post has become.
I guess what I am saying is I am going to approach a new doc, my current doc about this information. But I have had tests done to check for adrenal function, pituitary function, and about everything I can think of to have tested. It is so hard with the bad treatment.
I have had a lot of counseling, but my current condition has prevented me from leaving the house most of the time. When I do get out, I have to make up for lost time doing errands. I have twins. But I do wish I could go back, because my insurance will pay and I have a good couple of counselors. I cannot begin to describe the debilitation that my illness has caused.
I had my husband read your posts and he tries to understand. He is seeing the distress, but it is hard because my personality and illness have had such an impact. Also, there is a lot of history that I don't want to go into because it is too painful to go into right now. Perhaps another time.
Well, I have to go and eat. Believe it or not, my history is much longer than this post. I hope that I will get through this and be able to finish my social science (sociology degree). I had so many dreams and have watched them come and go. I look back and see a lot of failure. I know I should probably look at it differently, but my family history of the importance of being educated has caused me to feel badly. According to my raising, I should have graduated college by 22 at the latest, by 24-25 a master's degree, and 28-30 for a PhD. And then, of course, I really should be an M.D. as well. I hope this gives a glimpse into why I feel badly about myself. I am the only one who has taken this long. And my brother and sister both have graduate degrees.
I was fascinated by the information abou galactorrhoea, and I do have a limited comprehension of the endocrine system. Early on, I asked for a prolactin level to be run after noticing the discharge and lumps in the breast in an self-exam in the bath one night. The tests were run and I was told that my prolactin levels were normal. The also ran some tests to check the pituitary gland and adrenal function (24 hour urine test), but nothing came back out of the "normal" range. However, I typed in galactorrhoea to research a bit. I was fascinated that I am experiencing many of the symptoms associated with this disorder. A long time ago, I expressed the possibility to my last endo that I might have a pituitary tumor because of the breast leakage. He said that it was possible that the gland was enlarged or had a tumor on it, but that with adequate thyroid replacement, the leakage would stop. To some extent, this has been true. After I was no longer "hypo" according to the numbers, the leaking stopped. Incidently, I only noticed the leaking after doing the last part of the exam to check for discharge. It looked like it did when I was breast-feeding and felt the same (breast tender).
I have increased my thyroxine dose slightly, because these symtoms are usually associated with hypo for me despite the TSH being between 1 and 2. I am bothered that an MRI of the brain has not been run and I have asked for one before. I was told that it is normal for a lot of women to have breast discharge and mentions of "wet nurses" were made. But what bothers me is that the breast leakage is not without symptomology. If I felt fine and there was no blood or abnormality on mammograms/ultrasounds, that would be one thing. But I do not feel well and so I do not fall into the category of a little discharge is okay. And it is just a little. After I first time I saw discharge, I called my OB's office after hours. I was freaked out because of the lumps. The OB on call was as concerned and in fact, had the office call me to set up an appt. to be seen immediately. Then, a mammogram was ordered. Because my mom had breast cancer, things progressed rapidly and I was scared. The place I get my X-rays, etc. is well known for being good. They ran a mammogram with 6 views--digital mammography. Nothing was noted but the radiologist coded it as "suspicious" so an ultrasound would be paid for by Medicare. By the way, I am 36, although I refused to celebrate unless there were only 35 candles on the cake last year, claiming that I wanted some years back for what I have lost. My request was granted. The ultrasound revealed something in one of the ducts. I was immediately sent for a surgical consult, with a doctor that I do have confidence in. He is very humble, and that is rare to find especially when the doctor was trained at John's Hopkins University. I found out about him through other people in the medical field. He turned down a high position at John's Hopkins University, because he wanted to work with patients. He could have made a lot more money there than in private practice. So, let's just say that I respect him and he is so nice to me. He never passes judgment. Again, I went into see him because of the discharge. He was concerned and immediately ordered an US and mammogram. He also wanted to do three tests to check for the presence of blood in the milk. I did the tests and took them back to the office. I am awaiting the results, because I only took the tests in on Friday. Previous results were negative for blood.
But I am going to ask him if he will order an MRI of the brain to look for pituitary tumors. I wondered if the adrenal glands can also be examined in such a way. I will ask about the ACTH. I had this 24 hour urine test done to check for many different hormones, including but not limited to the adrenal hormones. Everything was "normal." But this is what I think for what it is worth. I think the point brought up about galactorrhoea is very valid and perhaps the tests are not showing it. Perhaps, the docs need to look deeper. I know that hypothyroidism can also lead to breast leakage. The endocrine system is all link in a very interesting way. I wish my brain could take stuff in like it used to. But I am afraid that my childhood lead to a lack of confidence and mixed with the illness, it has made me unable and afraid to look at complex information. It is as though I become panicked when looking at a science book like Biology, Anatomy and Physiology, etc. I can read Sociology, but my self-esteem is absent. That said, I braved it and looked into the info that was pointed out about galactorrhoea, because I need to know if something else could be being overlooked. And, believe me, I appreciate the information and I do not feel like it was too long. No info is too long if it can help or is intended to support someone in any way as far as I am concerned. You need not apologize as you can see how long my post has become.
I guess what I am saying is I am going to approach a new doc, my current doc about this information. But I have had tests done to check for adrenal function, pituitary function, and about everything I can think of to have tested. It is so hard with the bad treatment.
I have had a lot of counseling, but my current condition has prevented me from leaving the house most of the time. When I do get out, I have to make up for lost time doing errands. I have twins. But I do wish I could go back, because my insurance will pay and I have a good couple of counselors. I cannot begin to describe the debilitation that my illness has caused.
I had my husband read your posts and he tries to understand. He is seeing the distress, but it is hard because my personality and illness have had such an impact. Also, there is a lot of history that I don't want to go into because it is too painful to go into right now. Perhaps another time.
Well, I have to go and eat. Believe it or not, my history is much longer than this post. I hope that I will get through this and be able to finish my social science (sociology degree). I had so many dreams and have watched them come and go. I look back and see a lot of failure. I know I should probably look at it differently, but my family history of the importance of being educated has caused me to feel badly. According to my raising, I should have graduated college by 22 at the latest, by 24-25 a master's degree, and 28-30 for a PhD. And then, of course, I really should be an M.D. as well. I hope this gives a glimpse into why I feel badly about myself. I am the only one who has taken this long. And my brother and sister both have graduate degrees.
I noticed the links posted regarding tests to determine problems with the pituitary.
I wanted to add that I believe a couple of the tests were run, but it has been awhile.
1. Blood test to look for Cortisol. I think this is limiting, because hormones vary.
2. 24-hour free cortisol urine collection--I think it was more extensive, but I am sure that it was looking for hormones associated with the adrenal gland.
3. 24 hour (UFC) is a salivary cortisol screening test. This was done before I was diagnosed with Graves'. It indicated that my cortisol was slightly low. I went to an endo, and I hope I didn't already mention this, but he did a test where CRH was used, I believe. My memory of this is not good. After the test, I asked the endo if anything else could be wrong in the endo system. He said, "No." He then told me to go to my OB-GYN, because I was probably perimenopausal. I was 32. My OB ran tests and repeated them. She told me that I was not going into menopause and suggested that thyroid disease was the likely cause. She gave me an order to check TSH. But this always came back normal as it did on this occasion. No further study was done until I went to Mayo. Even there, that is another story. The endo that saw me was very dismissive of salivary tests and concluded things were fine because of this one test he ran. He was a jerk, I hate to say.
I wonder if there is a possibility that there is varying Cortisol levels. I have heard of adrenal fatigue or burnout from chronic illness, but everyone I have seen dismisses this. Any thoughts on this one? I think I need a good doctor to fully examine me and be willing to look at the "mixed bag" of symptoms. It really does require someone who is willing to try to solve a difficult puzzle. Nicely put Jenny.
Thanks,
Cheryl
I wanted to add that I believe a couple of the tests were run, but it has been awhile.
1. Blood test to look for Cortisol. I think this is limiting, because hormones vary.
2. 24-hour free cortisol urine collection--I think it was more extensive, but I am sure that it was looking for hormones associated with the adrenal gland.
3. 24 hour (UFC) is a salivary cortisol screening test. This was done before I was diagnosed with Graves'. It indicated that my cortisol was slightly low. I went to an endo, and I hope I didn't already mention this, but he did a test where CRH was used, I believe. My memory of this is not good. After the test, I asked the endo if anything else could be wrong in the endo system. He said, "No." He then told me to go to my OB-GYN, because I was probably perimenopausal. I was 32. My OB ran tests and repeated them. She told me that I was not going into menopause and suggested that thyroid disease was the likely cause. She gave me an order to check TSH. But this always came back normal as it did on this occasion. No further study was done until I went to Mayo. Even there, that is another story. The endo that saw me was very dismissive of salivary tests and concluded things were fine because of this one test he ran. He was a jerk, I hate to say.
I wonder if there is a possibility that there is varying Cortisol levels. I have heard of adrenal fatigue or burnout from chronic illness, but everyone I have seen dismisses this. Any thoughts on this one? I think I need a good doctor to fully examine me and be willing to look at the "mixed bag" of symptoms. It really does require someone who is willing to try to solve a difficult puzzle. Nicely put Jenny.
Thanks,
Cheryl
Dear Cheryl,
After I read your latest comments, I called my answering machine at home (my internet access is at my office only) to remind myself to find and bring into work a wise comment that is relevant to what you said in your first paragraph. My time in the office today was already earmarked for certain activities when I came in, and for the rest of this week, workaday activities will make it difficult to focus (still a problem at this stage of getting my hypothyroidism under control). Next weekend, however, when my time is entirely my own, I plan to write what I hope will be an well-organized and compressed mini-essay inspired by the comments in your first paragraph (including the aforementioned wise comment, which I plan to quote). Boy-oh-BOY, do I have some comments to make, and I hope that they will further strengthen your morale.
For now, I want to say that I am very glad to hear you have a couple of good counselors, and your insurance will pay. I am sure it feels like a minor comfort at the moment. When I think back a few months to the time when I felt my worst, and I remember what my everyday functioning was like, I can sort of imagine what you mean about your debilitation if I multiply my former debilitation by ten (and I was not trying to keep up with twins, who probably are still quite young...am I right?). Medically, my problems are much less complicated or severe than yours, which is why I multiply what I remember by ten as I try to imagine what you are going through. I remember feeling that it was like climbing one mountain after another to keep everyday life running at all. The unpredictability of whether each night and/or each day would be good or bad made it all the more difficult.
Being debilitated makes it more challenging to resolve relationship strains than I can begin to describe, and I am sure that you agree. When it became obvious last month that a major strain had developed in the usually very close relationship between my boss and me, I only wished it were practical to ask her if we could open our calendars and pencil-in the repair of our relationship for sometime this spring, when I hoped to feel closer to a fully functional person. Then in the meantime, could she just be super-supportive and nice to me? This is what I really longed to say!
The source of the strain, by the way, was the impact of my thyroid problem. Not that my boss said so or would have dreamed of saying such a thing, but it was obvious as we tried to tussle our problem to a point of resolution that my illness, and what it has done to our relationship, was at fault.
A lot of the destructive power of the illness (but again, it has been only a tenth as difficult as what you are going through) has been the way it has gone on and on. For now, I am omitting a bunch of details about my medical situation and just saying that there was a two-month lag between my beginning to be impaired and my starting to take levothyroxine. Then as we all know all too well, getting established on the right dose of levothyroxine is NOTHING like taking a ten-day course of an antibiotic and you are back to normal.
As a result, my boss has been through six difficult months with me. I know she is thinking positive, compassionate thoughts, but I sometimes wonder what is going on at the unconscious level. Does she understand that I have not developed sloppy habits of thinking or that I really could not do better about seeing certain angles in our research work (which I used to see) if only I tried harder? I hate the way a struggling thyroid gland can thoroughly mess up a person
After I read your latest comments, I called my answering machine at home (my internet access is at my office only) to remind myself to find and bring into work a wise comment that is relevant to what you said in your first paragraph. My time in the office today was already earmarked for certain activities when I came in, and for the rest of this week, workaday activities will make it difficult to focus (still a problem at this stage of getting my hypothyroidism under control). Next weekend, however, when my time is entirely my own, I plan to write what I hope will be an well-organized and compressed mini-essay inspired by the comments in your first paragraph (including the aforementioned wise comment, which I plan to quote). Boy-oh-BOY, do I have some comments to make, and I hope that they will further strengthen your morale.
For now, I want to say that I am very glad to hear you have a couple of good counselors, and your insurance will pay. I am sure it feels like a minor comfort at the moment. When I think back a few months to the time when I felt my worst, and I remember what my everyday functioning was like, I can sort of imagine what you mean about your debilitation if I multiply my former debilitation by ten (and I was not trying to keep up with twins, who probably are still quite young...am I right?). Medically, my problems are much less complicated or severe than yours, which is why I multiply what I remember by ten as I try to imagine what you are going through. I remember feeling that it was like climbing one mountain after another to keep everyday life running at all. The unpredictability of whether each night and/or each day would be good or bad made it all the more difficult.
Being debilitated makes it more challenging to resolve relationship strains than I can begin to describe, and I am sure that you agree. When it became obvious last month that a major strain had developed in the usually very close relationship between my boss and me, I only wished it were practical to ask her if we could open our calendars and pencil-in the repair of our relationship for sometime this spring, when I hoped to feel closer to a fully functional person. Then in the meantime, could she just be super-supportive and nice to me? This is what I really longed to say!
The source of the strain, by the way, was the impact of my thyroid problem. Not that my boss said so or would have dreamed of saying such a thing, but it was obvious as we tried to tussle our problem to a point of resolution that my illness, and what it has done to our relationship, was at fault.
A lot of the destructive power of the illness (but again, it has been only a tenth as difficult as what you are going through) has been the way it has gone on and on. For now, I am omitting a bunch of details about my medical situation and just saying that there was a two-month lag between my beginning to be impaired and my starting to take levothyroxine. Then as we all know all too well, getting established on the right dose of levothyroxine is NOTHING like taking a ten-day course of an antibiotic and you are back to normal.
As a result, my boss has been through six difficult months with me. I know she is thinking positive, compassionate thoughts, but I sometimes wonder what is going on at the unconscious level. Does she understand that I have not developed sloppy habits of thinking or that I really could not do better about seeing certain angles in our research work (which I used to see) if only I tried harder? I hate the way a struggling thyroid gland can thoroughly mess up a person
Hi,
I wanted to respond to the post from Jenny. It was a rough day, but I agree with a lot of what your post had to say and look forward to hearing anything that will improve my moral. I am sorry that you have experienced the same sorts of issues in your relationship with your boss. It is hard no matter how it affects us. There is so much I want to say, but I am tired. I found an endo willing to see me on February 14th. I woke up feeling a bit more positive today and called the GP I had mentioned. Their office asked me if I had any back injuries and I said yes, because I do and I have fms. Then, they told me they needed records before an appt. could be considered. I was quite upset. Because of having to switch doctors so much and because of the way so many docs are, there are a lot of things in my records I don't want other docs to see. It prejudices them and they get into the whole "doctor shopping thing you mentioned. I called back and got a different receptionist. This time I said I had fms, but I made it clear that I wasn't looking for pain meds. I told her that I wanted to see someone because of endocrine issues. I asked her to relay this to the doc. She said it would probably be a day or two. I don't have a good feeling, but I am not going to think about it, because it is out of my hands.
I have most of my records and I am appalled at some of the innaccurate and judgmental comments that are present in them. I have the right to ask that my records be amended or corrected, but right now, I don't have the health for it I hate to say this but for the most part, I do not like doctors. The endo I found is not associated with any hospital system which is good, takes Medicare, and has been practicing for 15 years for the thyroid, pituitary, and one other thing. So, let's hope for a good visit and possibly another cancellation. I am definitely going to ask for the MRI and am going to try to write as much history down as possible, but I am going to omit things that could prejudice the doctor like psychiatric. They should be open-minded, but it affects them on some level usually. After reading my records, I am going to be very careful about what comes out of my mouth other than clincial symptoms.
I wanted to mention something. You have mentioned that you have not met the criteria for fms. I am certain that Dr. Bennett, a well-known specialist for fms would agree that not everyone does. Clinical signs matter. I believe that there is a connection between fibro and thyroid in many cases. The diagnosis is basically made by exclusion though. He believes that I had fms long before I met diagnostic criteria. And I believe that you likely have fms. I wish they would study the thyroid, because I think it is one underlying cause of fms. I have found websites that talk about the connection and my pain meds have been reduced since the treatment of my thyroid meds. I think if adequately treated, there would be a possibility of me not needing to take meds. Out of curiousity, what are your clinical signs, Jenny?
I will write more later.
Thanks,
Cheryl
I wanted to respond to the post from Jenny. It was a rough day, but I agree with a lot of what your post had to say and look forward to hearing anything that will improve my moral. I am sorry that you have experienced the same sorts of issues in your relationship with your boss. It is hard no matter how it affects us. There is so much I want to say, but I am tired. I found an endo willing to see me on February 14th. I woke up feeling a bit more positive today and called the GP I had mentioned. Their office asked me if I had any back injuries and I said yes, because I do and I have fms. Then, they told me they needed records before an appt. could be considered. I was quite upset. Because of having to switch doctors so much and because of the way so many docs are, there are a lot of things in my records I don't want other docs to see. It prejudices them and they get into the whole "doctor shopping thing you mentioned. I called back and got a different receptionist. This time I said I had fms, but I made it clear that I wasn't looking for pain meds. I told her that I wanted to see someone because of endocrine issues. I asked her to relay this to the doc. She said it would probably be a day or two. I don't have a good feeling, but I am not going to think about it, because it is out of my hands.
I have most of my records and I am appalled at some of the innaccurate and judgmental comments that are present in them. I have the right to ask that my records be amended or corrected, but right now, I don't have the health for it I hate to say this but for the most part, I do not like doctors. The endo I found is not associated with any hospital system which is good, takes Medicare, and has been practicing for 15 years for the thyroid, pituitary, and one other thing. So, let's hope for a good visit and possibly another cancellation. I am definitely going to ask for the MRI and am going to try to write as much history down as possible, but I am going to omit things that could prejudice the doctor like psychiatric. They should be open-minded, but it affects them on some level usually. After reading my records, I am going to be very careful about what comes out of my mouth other than clincial symptoms.
I wanted to mention something. You have mentioned that you have not met the criteria for fms. I am certain that Dr. Bennett, a well-known specialist for fms would agree that not everyone does. Clinical signs matter. I believe that there is a connection between fibro and thyroid in many cases. The diagnosis is basically made by exclusion though. He believes that I had fms long before I met diagnostic criteria. And I believe that you likely have fms. I wish they would study the thyroid, because I think it is one underlying cause of fms. I have found websites that talk about the connection and my pain meds have been reduced since the treatment of my thyroid meds. I think if adequately treated, there would be a possibility of me not needing to take meds. Out of curiousity, what are your clinical signs, Jenny?
I will write more later.
Thanks,
Cheryl
Hi, Cheryl--
I am very sorry to hear that after you started your day feeling a little more positive, you called the GP's office and ran into a brick wall. I call it a brick wall because I share your viewpoint about medical records exactly. There are several good reasons NOT to want to hand over a lot of records to a physician you have not ever seen, especially when you have anything that can be viewed as a psychiatric history, as you and I have. In fact, it occurred to me last night that when I had advised you to put together an on-paper overview of your medical history, I should have tossed in a suggestion that you carefully conceal everything related to your history of abuse and your having sought therapy for it. I should have known that you did not need to be warned!
To anyone who wonders whether Cheryl and I are being paranoid or wise, I can assure you that we are wise to be guarded. Having worked in medical settings (including a teaching hospital), I have gained a lot of insight into medical education, and I also have been an eavesdropper, many times, as a physician's thought process was unfolding. What I learned is that most physicians get a small dab of psychiatry as part of their medical education. It is just enough to make them dangerous, sometimes. All they know is that some sets of physical symptoms can have an emotional basis. They do not know enough more about psychiatry to do anything but apply the insight much too broadly.
There also is the factor of having comments in your records that are inaccurate (or judgmental) and therefore misleading. Then there is something you mentioned in an earlier post. I very easily feel as if my privacy is being outrageously violated if a physician I do not know at all is able to cruise freely through medical information about me. I feel this way about information that contains nothing startling at all; it is just the principle of the thing. Even my own on-paper accounts... I have learned that before I feel okay about handing over a lot of details, I need the first few minutes of an initial visit to be sure I feel comfortable with the person.
I am not an overly private person by nature, either, but being a medical patient means being naked symbolically as well as literally, whether we want to be or not. When you have a medical problem that goes on and on and on (as you and I have had), it is inevitable, at least for some of us, to become just a little bit touchy about feeling intruded upon. Finally, not only do former records show that you have seen quite a few physicians, which is one more way in which a new physician could be prejudiced against you, there is no possible way for anyone to pull as coherent an overview out of your records as you can pull together and provide.
The outlook for the GP does not sound good, and I am very sorry about that. Just in case a strategy that I once found helpful turns out to be useful for you, I want to tell you about it. In the course of my long medical saga, I once learned of a physician who was focused on my sort of problem. No sooner did I decide to see her than she decided to shift her attention to a slightly different sub-specialty. She no longer was seeing patients with problems like mine. I wanted to convey a message to her, asking if she knew of a physician who practiced in what had become her former sub-specialty, but her office staff gave me a cold shoulder and no cooperation.
I was so down and out at that point, I thought my morale would snap in two. More out of frustration than hope, I wrote the physician a letter, explaining my situation and my need for a recommendation, and I wrote "personal note" in the left-hand bottom corner of the front of the envelope. I was sure that the staff would not dare to fail to give her the letter unopened. All the same, I assumed cynically that she would be as unsympathetic as her staff had been, but it turned out not to be true at all. The experience made me realize that sometimes an end run around the office staff
I am very sorry to hear that after you started your day feeling a little more positive, you called the GP's office and ran into a brick wall. I call it a brick wall because I share your viewpoint about medical records exactly. There are several good reasons NOT to want to hand over a lot of records to a physician you have not ever seen, especially when you have anything that can be viewed as a psychiatric history, as you and I have. In fact, it occurred to me last night that when I had advised you to put together an on-paper overview of your medical history, I should have tossed in a suggestion that you carefully conceal everything related to your history of abuse and your having sought therapy for it. I should have known that you did not need to be warned!
To anyone who wonders whether Cheryl and I are being paranoid or wise, I can assure you that we are wise to be guarded. Having worked in medical settings (including a teaching hospital), I have gained a lot of insight into medical education, and I also have been an eavesdropper, many times, as a physician's thought process was unfolding. What I learned is that most physicians get a small dab of psychiatry as part of their medical education. It is just enough to make them dangerous, sometimes. All they know is that some sets of physical symptoms can have an emotional basis. They do not know enough more about psychiatry to do anything but apply the insight much too broadly.
There also is the factor of having comments in your records that are inaccurate (or judgmental) and therefore misleading. Then there is something you mentioned in an earlier post. I very easily feel as if my privacy is being outrageously violated if a physician I do not know at all is able to cruise freely through medical information about me. I feel this way about information that contains nothing startling at all; it is just the principle of the thing. Even my own on-paper accounts... I have learned that before I feel okay about handing over a lot of details, I need the first few minutes of an initial visit to be sure I feel comfortable with the person.
I am not an overly private person by nature, either, but being a medical patient means being naked symbolically as well as literally, whether we want to be or not. When you have a medical problem that goes on and on and on (as you and I have had), it is inevitable, at least for some of us, to become just a little bit touchy about feeling intruded upon. Finally, not only do former records show that you have seen quite a few physicians, which is one more way in which a new physician could be prejudiced against you, there is no possible way for anyone to pull as coherent an overview out of your records as you can pull together and provide.
The outlook for the GP does not sound good, and I am very sorry about that. Just in case a strategy that I once found helpful turns out to be useful for you, I want to tell you about it. In the course of my long medical saga, I once learned of a physician who was focused on my sort of problem. No sooner did I decide to see her than she decided to shift her attention to a slightly different sub-specialty. She no longer was seeing patients with problems like mine. I wanted to convey a message to her, asking if she knew of a physician who practiced in what had become her former sub-specialty, but her office staff gave me a cold shoulder and no cooperation.
I was so down and out at that point, I thought my morale would snap in two. More out of frustration than hope, I wrote the physician a letter, explaining my situation and my need for a recommendation, and I wrote "personal note" in the left-hand bottom corner of the front of the envelope. I was sure that the staff would not dare to fail to give her the letter unopened. All the same, I assumed cynically that she would be as unsympathetic as her staff had been, but it turned out not to be true at all. The experience made me realize that sometimes an end run around the office staff
Just wanted to refer you to an article you should find very interesting, 'Pituitary Disease in Adults' - especially the section subtitled 'Hyperprolactinaemia and prolactinoma'
Box 1 lists the hormones that should be measured initially to detect pituitary hypo- or hyperfunction
http://www.mja.com.au/public/issues/180_08_190404/hur10511_fm.html
It is from the Medical Journal of Australia (a reputable/respectable resource) so you could show your doctor if you think it is appropriate.
Thinking of you and wishing you wellness
jenipeni
Box 1 lists the hormones that should be measured initially to detect pituitary hypo- or hyperfunction
http://www.mja.com.au/public/issues/180_08_190404/hur10511_fm.html
It is from the Medical Journal of Australia (a reputable/respectable resource) so you could show your doctor if you think it is appropriate.
Thinking of you and wishing you wellness
jenipeni
You are priceless, jenipeni! It is wonderful that you are batting on Cheryl's team. You are so right about the source. Even though I am not in the medical field, my vocational areas overlaps with some of the areas of medicine. I can assure Cheryl that you are right-on in saying that the Medical Journal of Australia will be viewed as a reputable/respectable resource by any physician.
My jaw sagged when I followed the link you provided and found that even the pdf version of the article (much nicer for printing) is available free of charge. Quite a contrast to the policies of virtually every American professional journal. It probably says something about the cultural differences between America and other parts of the world in the areas of materialism and greed.
Cheryl, you asked yesterday about my clinical signs of FMS. At least one aspect of my sleep disturbances is characteristic of FMS, I think (although you are much more knowledgable in this area than I am, so please tell me if I am right or if I am mistaken). The aspect I am thinking of is a subjective sense of inadequate depth when I sleep.
Mostly, I have thought of my sleeping problems as estrogen-related, partly because my typical pattern of disturbed sleep seems to be a classic pattern for many perimenopausal (and some pregnant) women. My other reason for relating estrogen to my sleeping problems is the way HRT, once I started taking it, was something like a miracle cure.
HRT was a miracle cure for my muscles, too, but just before I began to take it, my vulnerability to muscle pain had worsened to the point of making me functionally disabled in some ways. Over and over, I would have what felt like an overuse injury after so little overuse that it was ridiculous.
In addition, although I never have had a time of ongoing sore places, I do have something that seems quite bizarre to me and that especially says "FMS" to my rheumatologist. Once an area of a muscle feels insulted, it "remembers" the insult for months and months afterward. Often, a place in my musculature that put me through many days of soreness while it "healed" from its "injury" (in each of these instances, the stress on the muscle was so slight that an actual injury seems unlikely) will suddenly feel sore again, for no apparent reason, as long as three years after the original insult!
My rheumatologist has said that among the people he sees who have FMS, many women report symptomatology ups and downs according to where they are in a menstrual cycle, but he has not known anyone but me for whom the link between muscle pain and estrogen is so strong. My clinical picture is not a simple one, though, and I agree wholeheartedly that it would be good if the FMS experts looked harder at the thyroid gland. I am still early in the process of getting established on levothyroxine (so it is too soon to know where the dust will settle ultimately in regard to whether I shall continue to need other hormones) but I am seeing interrelations among sleep, muscle pain, levothyroxine, estradiol, and progesterone (I take 17-beta estradiol and micronized progesterone). The interactions do not always seem to me like what I am sure the medical textbooks would say they should be.
More than one physician has agreed with me that what is true in my area of social science is true in medical areas, too. Looking back in time, and then looking at everything we would like to know, it is obvious that research is still in its infancy, and we have only about 2% of a complete picture of most things we are trying to understand. This is why I have found it positively maddening when I found myself talking to a physician whose attitude seemed to be that if my report of what was happening inside of me did not match up with something in the medical literature, then my report was not credible. It is an odd form of arrogance, as I commented in this forum a few days ago.
My jaw sagged when I followed the link you provided and found that even the pdf version of the article (much nicer for printing) is available free of charge. Quite a contrast to the policies of virtually every American professional journal. It probably says something about the cultural differences between America and other parts of the world in the areas of materialism and greed.
Cheryl, you asked yesterday about my clinical signs of FMS. At least one aspect of my sleep disturbances is characteristic of FMS, I think (although you are much more knowledgable in this area than I am, so please tell me if I am right or if I am mistaken). The aspect I am thinking of is a subjective sense of inadequate depth when I sleep.
Mostly, I have thought of my sleeping problems as estrogen-related, partly because my typical pattern of disturbed sleep seems to be a classic pattern for many perimenopausal (and some pregnant) women. My other reason for relating estrogen to my sleeping problems is the way HRT, once I started taking it, was something like a miracle cure.
HRT was a miracle cure for my muscles, too, but just before I began to take it, my vulnerability to muscle pain had worsened to the point of making me functionally disabled in some ways. Over and over, I would have what felt like an overuse injury after so little overuse that it was ridiculous.
In addition, although I never have had a time of ongoing sore places, I do have something that seems quite bizarre to me and that especially says "FMS" to my rheumatologist. Once an area of a muscle feels insulted, it "remembers" the insult for months and months afterward. Often, a place in my musculature that put me through many days of soreness while it "healed" from its "injury" (in each of these instances, the stress on the muscle was so slight that an actual injury seems unlikely) will suddenly feel sore again, for no apparent reason, as long as three years after the original insult!
My rheumatologist has said that among the people he sees who have FMS, many women report symptomatology ups and downs according to where they are in a menstrual cycle, but he has not known anyone but me for whom the link between muscle pain and estrogen is so strong. My clinical picture is not a simple one, though, and I agree wholeheartedly that it would be good if the FMS experts looked harder at the thyroid gland. I am still early in the process of getting established on levothyroxine (so it is too soon to know where the dust will settle ultimately in regard to whether I shall continue to need other hormones) but I am seeing interrelations among sleep, muscle pain, levothyroxine, estradiol, and progesterone (I take 17-beta estradiol and micronized progesterone). The interactions do not always seem to me like what I am sure the medical textbooks would say they should be.
More than one physician has agreed with me that what is true in my area of social science is true in medical areas, too. Looking back in time, and then looking at everything we would like to know, it is obvious that research is still in its infancy, and we have only about 2% of a complete picture of most things we are trying to understand. This is why I have found it positively maddening when I found myself talking to a physician whose attitude seemed to be that if my report of what was happening inside of me did not match up with something in the medical literature, then my report was not credible. It is an odd form of arrogance, as I commented in this forum a few days ago.
Hi again
Some more websites related to the tests listed in the last page I refered you to. These new ones are from a UK site but it is a .org so should be reliable and only slightly different if at all to the US.
I recommend that you print off each of the links and read them at your leisure with a highlighter pen in hand. Use the pen everytime something pops out to you as interesting or appropriate. Don't try and take it all in at once.
Prolactin test
http://labtestsonline.org/understanding/analytes/prolactin/test.html
Luteinising hormone (LH)
http://www.labtestsonline.org/understanding/analytes/lh/test.html
follicle-stimulating hormone (FSH)
http://www.labtestsonline.org/understanding/analytes/fsh/test.html
Testosterone
http://www.labtestsonline.org/understanding/analytes/testosterone/test.html
Estrogen
http://www.labtestsonline.org/understanding/analytes/estrogen/glance.html
Adrenocorticotropic hormone (ACTH)
http://www.labtestsonline.org/understanding/analytes/acth/test.html
Cortisol
http://www.labtestsonline.org/understanding/analytes/cortisol/test.html
Hope you don't feel bombarded!!!
Isn't Jenny a lovely supportive person? Wow! We are blessed to be connected this way to others who can understand our suffering.
Best wishes and wellness
jenipeni
Some more websites related to the tests listed in the last page I refered you to. These new ones are from a UK site but it is a .org so should be reliable and only slightly different if at all to the US.
I recommend that you print off each of the links and read them at your leisure with a highlighter pen in hand. Use the pen everytime something pops out to you as interesting or appropriate. Don't try and take it all in at once.
Prolactin test
http://labtestsonline.org/understanding/analytes/prolactin/test.html
Luteinising hormone (LH)
http://www.labtestsonline.org/understanding/analytes/lh/test.html
follicle-stimulating hormone (FSH)
http://www.labtestsonline.org/understanding/analytes/fsh/test.html
Testosterone
http://www.labtestsonline.org/understanding/analytes/testosterone/test.html
Estrogen
http://www.labtestsonline.org/understanding/analytes/estrogen/glance.html
Adrenocorticotropic hormone (ACTH)
http://www.labtestsonline.org/understanding/analytes/acth/test.html
Cortisol
http://www.labtestsonline.org/understanding/analytes/cortisol/test.html
Hope you don't feel bombarded!!!
Isn't Jenny a lovely supportive person? Wow! We are blessed to be connected this way to others who can understand our suffering.
Best wishes and wellness
jenipeni
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