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Long-Term Thyroid Disease
I have been asked to post a poll regarding my lifetime of experience with thyroid disease, mostly undiagnosed or mis diagnosed, and why I place so much emphasis on sonograms/ultrasounds.
First off, for 4 years my doctor suspected thyroiditis and possibly Hashi's, but I returned in range results every time, including 2 days before I suffered a thyroidic storm that he treated. Anybody could have looked at my tumors if an ultrasound had been ordered, and noted they were old, actively growing, and the cyst at the isthmus was leaking. This is why I have low value in blood, and saliva testing. There's an old saying, "you can't get a good feeling what's wrong with the engine without opening the hood". The sonogram is the best way to do this in my opinion.
During my research for my book, I spoke with equipment design engineers, the ATA, and Endos across the country regarding the failure of my blood tests to equip my Doc for the proper diagnosis. I have learned a lot from those discussions, but few answers are consistent in this community. The equip mfg's blame the ATA and lack of research, the ATA blames lack of funds for studies, the Endo's blame both parties. I don't have a reason why a female MS would write a book about the failure of blood testing for thyroid disease, but one has, entitled: Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism
In addition, I have many ancillary problems due to the long term nature of my condition, including 21 years of unnecessary allergy shots when my hyperthyroidic condition has damaged my sinuses which will require a seperate surgery very soon. Thyroid disease from tumors has killed my Mother 6 years ago, (45 nodules & metasizing cancer), and my sister committed suicide while being treated when she was told she had inoperable colon cancer. The autopsy proved her thyroid had been dead for at least 2 years and Parkinson's was developing, but no cancer of any kind. In either case, simple songrams would have made a very important difference, the gland was about 10% of a normal size gland. It was dead for a long time.
I want all in this group to express themselves with their practical knowledge for the benefit of others, that's exactly why I suggest why and what I do. I've never stated this is the only useful method for diagnosis, but no Endo will argue that it is useful in any thyroid issue. Thanks for the opportunity to clear this up, I hope it helps.
Best
Clay Ballentine
First off, for 4 years my doctor suspected thyroiditis and possibly Hashi's, but I returned in range results every time, including 2 days before I suffered a thyroidic storm that he treated. Anybody could have looked at my tumors if an ultrasound had been ordered, and noted they were old, actively growing, and the cyst at the isthmus was leaking. This is why I have low value in blood, and saliva testing. There's an old saying, "you can't get a good feeling what's wrong with the engine without opening the hood". The sonogram is the best way to do this in my opinion.
During my research for my book, I spoke with equipment design engineers, the ATA, and Endos across the country regarding the failure of my blood tests to equip my Doc for the proper diagnosis. I have learned a lot from those discussions, but few answers are consistent in this community. The equip mfg's blame the ATA and lack of research, the ATA blames lack of funds for studies, the Endo's blame both parties. I don't have a reason why a female MS would write a book about the failure of blood testing for thyroid disease, but one has, entitled: Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism
In addition, I have many ancillary problems due to the long term nature of my condition, including 21 years of unnecessary allergy shots when my hyperthyroidic condition has damaged my sinuses which will require a seperate surgery very soon. Thyroid disease from tumors has killed my Mother 6 years ago, (45 nodules & metasizing cancer), and my sister committed suicide while being treated when she was told she had inoperable colon cancer. The autopsy proved her thyroid had been dead for at least 2 years and Parkinson's was developing, but no cancer of any kind. In either case, simple songrams would have made a very important difference, the gland was about 10% of a normal size gland. It was dead for a long time.
I want all in this group to express themselves with their practical knowledge for the benefit of others, that's exactly why I suggest why and what I do. I've never stated this is the only useful method for diagnosis, but no Endo will argue that it is useful in any thyroid issue. Thanks for the opportunity to clear this up, I hope it helps.
Best
Clay Ballentine
For your first question, I would like to say I am BITTER, bitter to the core. I feel cheated, distrustful, resentful and down right hurt. Having to justify to a Family Law Court, that my behaviour and sleeping for 18 hours a day was not a drug habit, (even had the humiliation of peeing in front of 3 nurses to prove that point) that me seeing doctor's and insisting on thyroid testing was not a kind of Munchausen's disease. How do you ever justify to people who just make assumptions? Years later with 2 scars and the lack of being there for my children for over 8 years, still makes no difference to their way of thinking. It hurts.
Yes, it made me learn not to trust the medical profession implicitly. I learned they are like car mechanics, some don't bother to upgrade their learning to look at the newer models. I learned their own personalities get in the way of better medical care. Some have egos as big as a mountain and will never open their minds even when confronted with other colleagues information.
In Australia, you are lucky to get an appointment in the same week, let alone a house call. It used to be you could ask for one, they would come at the end of the day, it was allocated in their practises for that. Not any more. You want a house call, go to an ER and wait at least up to 7 hours (providing you aren't bleeding to death, if you are, then you will be seen, maybe, possibly immediately) I am sure there must be doctors who are 80+ years old who still somewhere in a country town do housecalls, but our health system actually makes sure our doctors see so many patients a day and at the standard 7.5 minutes each. The government takes a percentage of the bill for each patient. So there's no point in wasting time on home visits!
A lot of opinons people have today are from TV shows from the 80's/90's and even today that portray doctors (and lawyers too) as rousing advocates for saving lives. Do you feel this way after your delayed diagnosis experience?
In reply to your last question, I can give you an example of how good doctors who fight for their patients are swept under the carpet.
New lady doctor I had been seeing, was totally on the ball. Sent me for many tests, not just in regard to my thyroid issues. First time I was being 'heard' Her usual amount of time for seeing me (or anyone who visited her) average was 25 minutes. She used to be an ER doctor, so as she said, she needed to start in the worst case scenario and work backwards. How many doctors do that? I had a follow up visit to see her regarding my abnormal thyroid results, only to be told she had been moved on. Why? Well, gee I think it is obvious. Took to caring for her patients. Was solving problems too quickly. We don't want that now do we? Patients need to keep paying for drugs they don't need, tests that could be avoided, and in less than 7.5 minutes, can only give half the reason they are there in the first place. She cared and I am sure I would be better by now, if not for stupid politics and greed of the health system here in the Land of Oz!
I am enjoying your posts and hope that many people will respond and can see that thyroid disease is not just a battle internally but also externally as well!
Cheers!
Yes, it made me learn not to trust the medical profession implicitly. I learned they are like car mechanics, some don't bother to upgrade their learning to look at the newer models. I learned their own personalities get in the way of better medical care. Some have egos as big as a mountain and will never open their minds even when confronted with other colleagues information.
In Australia, you are lucky to get an appointment in the same week, let alone a house call. It used to be you could ask for one, they would come at the end of the day, it was allocated in their practises for that. Not any more. You want a house call, go to an ER and wait at least up to 7 hours (providing you aren't bleeding to death, if you are, then you will be seen, maybe, possibly immediately) I am sure there must be doctors who are 80+ years old who still somewhere in a country town do housecalls, but our health system actually makes sure our doctors see so many patients a day and at the standard 7.5 minutes each. The government takes a percentage of the bill for each patient. So there's no point in wasting time on home visits!
A lot of opinons people have today are from TV shows from the 80's/90's and even today that portray doctors (and lawyers too) as rousing advocates for saving lives. Do you feel this way after your delayed diagnosis experience?
In reply to your last question, I can give you an example of how good doctors who fight for their patients are swept under the carpet.
New lady doctor I had been seeing, was totally on the ball. Sent me for many tests, not just in regard to my thyroid issues. First time I was being 'heard' Her usual amount of time for seeing me (or anyone who visited her) average was 25 minutes. She used to be an ER doctor, so as she said, she needed to start in the worst case scenario and work backwards. How many doctors do that? I had a follow up visit to see her regarding my abnormal thyroid results, only to be told she had been moved on. Why? Well, gee I think it is obvious. Took to caring for her patients. Was solving problems too quickly. We don't want that now do we? Patients need to keep paying for drugs they don't need, tests that could be avoided, and in less than 7.5 minutes, can only give half the reason they are there in the first place. She cared and I am sure I would be better by now, if not for stupid politics and greed of the health system here in the Land of Oz!
I am enjoying your posts and hope that many people will respond and can see that thyroid disease is not just a battle internally but also externally as well!
Cheers!
COMMUNITY LEADER
It seems that most of us have our "horror stories" of how we have been treated by doctors, including myself and my experience with pcp who insisted on dosing my med according to TSH (he tested FT4, but paid no attention to the result); I'm one of those whose TSH stays extremely low, so of course as soon as my TSH dropped from its original level of 55+, he began decreasing my med, in spite of the fact that I still had hypo symptoms; his reasoning, of course, was that I was hyper simply because my TSH was lower than normal.
If not for a series of events that got me sent to an ENT (not by the pcp) by whom I'd been treated previously for other things, I would still be struggling.
For the most part, I find that the majority of doctors are very arrogant and many of them resent having their authority questioned. This makes them resentful of the internet because we can get so much information to help ourselves. Had it not been for this very website, I would not have known to get FT3 testing; even at that, when I asked for it, my pcp refused to test it, saying that it's used "only for research purposes" --- say what???? Because of a couple of doctors I've had over the past 15 yrs, my respect for, and trust in, the medical profession has declined indescribably.
I don't think this is an issue just in the US - I have been in contact with people in other countries that have socialized medicine - many of them, too, only test for certain things (mainly TSH, although some will do FT4). I don't see socialized medicine as being any better than our system because many of the doctors still have the same attitude.
I think the whole issue has to do with several factors, including, but not limited to doctor arrogance, limited thyroid training in med school, unwillingness to change protocol even when new tests or techniques are proven reliable and effective, unwillingness to take the patient seriously causing the tendency to put the symptoms down to depression, along with the cost of lab work, and the fact that it's pretty much dictated by either a NHS or insurance companies.
Until doctors understand/acknowledge that we know our bodies better than they do, people are going to continue to suffer needlessly with thyroid issues, unless they are one of the lucky few to find a doctor who is conscious of the latest treatment techniques, will test properly, and treat the patient with compassion and respect, putting the most emphasis on symptoms and how the patient feels than focusing on only one or 2 tests.
I consider myself SO lucky that things took the turn they did for me; I wish everyone could get the care/treatment they need.
If not for a series of events that got me sent to an ENT (not by the pcp) by whom I'd been treated previously for other things, I would still be struggling.
For the most part, I find that the majority of doctors are very arrogant and many of them resent having their authority questioned. This makes them resentful of the internet because we can get so much information to help ourselves. Had it not been for this very website, I would not have known to get FT3 testing; even at that, when I asked for it, my pcp refused to test it, saying that it's used "only for research purposes" --- say what???? Because of a couple of doctors I've had over the past 15 yrs, my respect for, and trust in, the medical profession has declined indescribably.
I don't think this is an issue just in the US - I have been in contact with people in other countries that have socialized medicine - many of them, too, only test for certain things (mainly TSH, although some will do FT4). I don't see socialized medicine as being any better than our system because many of the doctors still have the same attitude.
I think the whole issue has to do with several factors, including, but not limited to doctor arrogance, limited thyroid training in med school, unwillingness to change protocol even when new tests or techniques are proven reliable and effective, unwillingness to take the patient seriously causing the tendency to put the symptoms down to depression, along with the cost of lab work, and the fact that it's pretty much dictated by either a NHS or insurance companies.
Until doctors understand/acknowledge that we know our bodies better than they do, people are going to continue to suffer needlessly with thyroid issues, unless they are one of the lucky few to find a doctor who is conscious of the latest treatment techniques, will test properly, and treat the patient with compassion and respect, putting the most emphasis on symptoms and how the patient feels than focusing on only one or 2 tests.
I consider myself SO lucky that things took the turn they did for me; I wish everyone could get the care/treatment they need.
Unfortunately, I think gimel is right...we are all so close to thyroid that we understand how pitiful the standard of care is for it in this country. However, I fear that a low standard of care is much more pervasive than we think. We just don't (can't) study all the different diseses, so don't really appreciate that we (thyroidians) are not the only ones being poorly treated.
In the last fifty years or so, tremendous strides have been made in the science of medicine, especially in the realm of diagnostics. However, between the reliance on more sophisticated diagnostic and treatment tools and the litigious nature of our society, we have lost something extremely valuable...the art of healing. Few doctors still understand how to talk to their patients. It's much easier to simply look at "hard" evidence (tests) and see if they fall into reference range. If they do, the doctor is "covered", and the patient is pronounced "well". The art of healing involves the interpretation of tests (beyond just verifying that they are within range), considering scientific results along with patient symptoms and reaching a treatment plan tailor-made for each individual.
Not a lot of money in that. It takes time. It gets onto shaky ground (no more science to cover your backside in court).
Competition is sadly lacking. I live in a rural area where about half the state is covered by the four hospitals in the four city center. ALL are owned by the same parent company. And, the parent company is now in the process of buying doctor's out of their private practices and making them employees. Is it any wonder that the local news recently reported that angioplasty costs four times more here than on the other (more populated) side of the state? Doctors who no longer work for themselves are often pushed to see more patients in order to increase their salaries and/or to "code" more.
It's a sad state of affairs to have medical costs spiraling out of control while at the same time having quality of care in a tailspin.
That having been said, I am also extremely lucky to have found an endo who talks to me and who I find very competent (good doctors are out there, but it can take time, effort and money to find the right one). We're considering a move in the next several years, and I can only hope that I will be as lucky the next time around.
In the last fifty years or so, tremendous strides have been made in the science of medicine, especially in the realm of diagnostics. However, between the reliance on more sophisticated diagnostic and treatment tools and the litigious nature of our society, we have lost something extremely valuable...the art of healing. Few doctors still understand how to talk to their patients. It's much easier to simply look at "hard" evidence (tests) and see if they fall into reference range. If they do, the doctor is "covered", and the patient is pronounced "well". The art of healing involves the interpretation of tests (beyond just verifying that they are within range), considering scientific results along with patient symptoms and reaching a treatment plan tailor-made for each individual.
Not a lot of money in that. It takes time. It gets onto shaky ground (no more science to cover your backside in court).
Competition is sadly lacking. I live in a rural area where about half the state is covered by the four hospitals in the four city center. ALL are owned by the same parent company. And, the parent company is now in the process of buying doctor's out of their private practices and making them employees. Is it any wonder that the local news recently reported that angioplasty costs four times more here than on the other (more populated) side of the state? Doctors who no longer work for themselves are often pushed to see more patients in order to increase their salaries and/or to "code" more.
It's a sad state of affairs to have medical costs spiraling out of control while at the same time having quality of care in a tailspin.
That having been said, I am also extremely lucky to have found an endo who talks to me and who I find very competent (good doctors are out there, but it can take time, effort and money to find the right one). We're considering a move in the next several years, and I can only hope that I will be as lucky the next time around.
I am so very fortunate to have an MD that will listen and discuss thyroid problems with me and be very flexible on medication and dosage. I think partly because she is hypo as well. Unfortunately this doctor is not taking any new patients, so I've had to resort to calling all around the city area where I live, trying to find good thyroid doctors for friends who need help. Some of these friends have had unbelievable experiences with their doctors. One doctor refuses to give copies of blood test results when everything is supposedly "normal". Another friend's doctor refused to test for T3 at all, much less FT3. Another that said a friend was fine, did not need thyroid testing. Another that allowed a friend to become morbidly obese, with attendant leg edema that got so bad it eventually became cellulitis, because her TSH was "normal", but she was never even told what the TSH level was.
In my desperation, trying to find a good thyroid doctor for these friends, I have used the Top Thyroid doctor list for this area. I even resorted to calling and asking if the doctor was wiling to test and adjust FT3 and FT4 with meds as necessary to relieve symptoms, without being constrained by resultant TSH levels. I also asked if the doctor was willing to prescribe meds other than T4 types. So far I only found one good prospect, very far away and he is no longer taking new patients.
I even resorted to checking out the only Endo in the nearby area. My experience with him was very brief. He looked at my TSH result, which was .05 and said that I needed to reduce my Synthroid right away, that I was hyperthyroid. I told him that I was not, that I actually had lingering hypo symptoms, and that my TSH had been that way for 25 years. I wanted to talk about testing for FT3, and FT4, along with TSH. He didn't feel that was necessary, that TSH told all about the thyroid status, and that his target for TSH was 1.0 - 1.5. Needless to say, that was my only trip there.
I did think that it was revealing that in the middle of the day, in his busy waiting room filled with his regular patients, that about half of them had dozed off while waiting and were snoring out loud. Not too hard to figure out why. LOL
I know and have gone to many good doctors and also many mediocre doctors. Some are very caring and reasonable and will listen and discuss things with you, without having an all knowing attitude. But some are so arrogant, they have no need to listen or discuss anything with you, they only want to look at lab report and physical exam results. I experience the worst of this with thyroid problems, yet I know it exists in other areas as well. A lot of it is just human nature, unfortunately, and a lot of it is not wanting to take extra time , because more patients mean more money. It does seem that we have more than our share of mediocre doctors when it comes to thyroid problems. A doctor friend of mine said that during medical school, thyroid is only a small part of the time allotted to the study of Endocrinology. I can understand that as a start, but I totally don't understand the later resistance to adopt newer information, such as the 8 year old recommendation for a revised range for TSH. I also don't understand the apparent lack of advancement in the field of thyroid diagnosis and treatment.
I sometimes think that we don't have enough doctors available in order to create competition for patients, by first being a good doctor, by having predictable appointment times, and good followup with patients. I think all of this is adversely affected by artificially restricting the number of graduates from our medical schools. I think it is also adversely affected by the number of medical malpractice suits the doctors face. JMHO
In my desperation, trying to find a good thyroid doctor for these friends, I have used the Top Thyroid doctor list for this area. I even resorted to calling and asking if the doctor was wiling to test and adjust FT3 and FT4 with meds as necessary to relieve symptoms, without being constrained by resultant TSH levels. I also asked if the doctor was willing to prescribe meds other than T4 types. So far I only found one good prospect, very far away and he is no longer taking new patients.
I even resorted to checking out the only Endo in the nearby area. My experience with him was very brief. He looked at my TSH result, which was .05 and said that I needed to reduce my Synthroid right away, that I was hyperthyroid. I told him that I was not, that I actually had lingering hypo symptoms, and that my TSH had been that way for 25 years. I wanted to talk about testing for FT3, and FT4, along with TSH. He didn't feel that was necessary, that TSH told all about the thyroid status, and that his target for TSH was 1.0 - 1.5. Needless to say, that was my only trip there.
I did think that it was revealing that in the middle of the day, in his busy waiting room filled with his regular patients, that about half of them had dozed off while waiting and were snoring out loud. Not too hard to figure out why. LOL
I know and have gone to many good doctors and also many mediocre doctors. Some are very caring and reasonable and will listen and discuss things with you, without having an all knowing attitude. But some are so arrogant, they have no need to listen or discuss anything with you, they only want to look at lab report and physical exam results. I experience the worst of this with thyroid problems, yet I know it exists in other areas as well. A lot of it is just human nature, unfortunately, and a lot of it is not wanting to take extra time , because more patients mean more money. It does seem that we have more than our share of mediocre doctors when it comes to thyroid problems. A doctor friend of mine said that during medical school, thyroid is only a small part of the time allotted to the study of Endocrinology. I can understand that as a start, but I totally don't understand the later resistance to adopt newer information, such as the 8 year old recommendation for a revised range for TSH. I also don't understand the apparent lack of advancement in the field of thyroid diagnosis and treatment.
I sometimes think that we don't have enough doctors available in order to create competition for patients, by first being a good doctor, by having predictable appointment times, and good followup with patients. I think all of this is adversely affected by artificially restricting the number of graduates from our medical schools. I think it is also adversely affected by the number of medical malpractice suits the doctors face. JMHO
For sure finding a way to get tested when we know something is wrong is very important.
I was diagnosed forty years ago with low thyroid and put on a synthetic t4. Decades past with my still having thyroid symptoms. About 20 years ago I asked a doctor why all the women in my family had low thyroid and he tested for antibodies. He told me I had Hashimoto's but that it didn't really mean much and not to worry about it. Decades later, I am having low thyroid symptoms and I ask my doctor if all the levels can be tested. That showed I also have low free T3 and I was put on a combination drug. For some time I had been also having swallowing problems and now also have a diagnoes of autonomic dysfunction. When I first told my family doctor I had swallowing problemsI was told I have globus implying It may be all in my head. No further testing was done. I can tell I am swallowing wrong and having difficulty with sleeping as well. I ask for a thyroid ultrasound and am refused by my regular doctor. I seek out a GI doctor who isn't interested in my swallowing problem and who only does one expensive test. Then I go to a very good ENT who scopes me and sees swollen laryngeal area with evidence of reflux and she orders both a thyroid ultrasound and a modified barium swallow. Finally!
This is 43 years after my original diagnoses. I don't even know if I had free T3 tested originally. I haven't had the swallow test yet as it is scheduled for next week. I don't have my ultrasound test back as yet but the tech asked me if I had abellation therapy as she had trouble "finding" my thyroid. I guess that tells a lot. She said only a small triangle remains. I have been having racing heart and SOB this week so another doctor redid the thyroid panel and told me to drop my thyroid med dose in half until we get the results back. Better testing and better follow up are needed for us for sure. We also need to be persistent when we know something is wrong. I think not adjusting thyroid can lead to even more problems. Marie
I was diagnosed forty years ago with low thyroid and put on a synthetic t4. Decades past with my still having thyroid symptoms. About 20 years ago I asked a doctor why all the women in my family had low thyroid and he tested for antibodies. He told me I had Hashimoto's but that it didn't really mean much and not to worry about it. Decades later, I am having low thyroid symptoms and I ask my doctor if all the levels can be tested. That showed I also have low free T3 and I was put on a combination drug. For some time I had been also having swallowing problems and now also have a diagnoes of autonomic dysfunction. When I first told my family doctor I had swallowing problemsI was told I have globus implying It may be all in my head. No further testing was done. I can tell I am swallowing wrong and having difficulty with sleeping as well. I ask for a thyroid ultrasound and am refused by my regular doctor. I seek out a GI doctor who isn't interested in my swallowing problem and who only does one expensive test. Then I go to a very good ENT who scopes me and sees swollen laryngeal area with evidence of reflux and she orders both a thyroid ultrasound and a modified barium swallow. Finally!
This is 43 years after my original diagnoses. I don't even know if I had free T3 tested originally. I haven't had the swallow test yet as it is scheduled for next week. I don't have my ultrasound test back as yet but the tech asked me if I had abellation therapy as she had trouble "finding" my thyroid. I guess that tells a lot. She said only a small triangle remains. I have been having racing heart and SOB this week so another doctor redid the thyroid panel and told me to drop my thyroid med dose in half until we get the results back. Better testing and better follow up are needed for us for sure. We also need to be persistent when we know something is wrong. I think not adjusting thyroid can lead to even more problems. Marie
Doctors that commonly blame symptoms on everything else! So ready to prescribe unnecessary, dangerous and addictive medications, before doing a simple blood test. The bad habit of giving labels like fibro. or depression or high cholesterol to a patient instead of treating the real underlying root of the problem-hypothyroidism- makes me CRAZY! It does make one think twice about the profession and their common "practices."
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