Thyroid Disorders Community
Long-Term Thyroid Disease
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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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
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9 Members voted
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28 Comments Post a Comment
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649848_tn?1357751184
You said "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"

That book was not written by a female (not that the gender matters in the least); it was written by Dr Datis Kharrazain, who is a chiropractor.  

You also said: "few answers are consistent in this community".  This is not true. Our answers almost always suggest that patients get first, a basic thyroid panel (TSH, FT3 and FT4); but almost all of us acknowledge that those blood tests may not show the entire picture regarding thyroid issues.  We know it's very common for the usual thyroid blood panel results to come back normal and while symptoms of being hypothyroid (or in some cases, hyperthyroid) persist.  That's when it's important to go on and do the testing for antibodies for both Hashi's (TPOab and TGab) and Graves (TSI).  There are some people who have both.  However, when the basic panel comes back normal, this is generally when the doctor says "there's nothing wrong with you".  

In addition to the blood work, I'm sure that none of us, either, would argue the point over whether or not an ultra sound is useful.  We often recommend that most patients get an ultra sound to check for inflammation, swelling, nodules or other visible signs of trouble. This is in addition to the blood work.  Most of us are very aware that it's  possible for a person to have nodules that might leak, causing the person to swing between hyper and hypo, cancer or other issues that can't be detected via blood work.

While patients can certainly become hyper with Hashi's, due to leaking nodules or other issues, Hashi's is most often related to being hypo, while Graves Disease is most often related to being hyper.  Both usually lead to hypo and the need for thyroid supplementation, eventually.  

It seems as if you have had some issues with your thyroid that would be a bit more complex than a lot of us have; in addition, your family history of thyroid problems should have been a clue for your doctor to leave no stone unturned.  I'm still trying to figure out why it took 4 yrs for your doctor to diagnose Hashi's, since antibody testing and an u/s can make this a pretty quick diagnosis.

Many patients who ask questions on this forum, find that their doctors are not willing to test for anything besides TSH and maybe FT4; when it comes to even FT3 or antibody testing, many of them (doctors) flat out refuse.  This is what happened to me when I was first diagnosed; my pcp refused FT3 or antibody testing, as well as an u/s; plus he dosed my med based only on TSH, so he kept me very ill for quite a few months until I got sent to an ENT for supposedly unrelated issues.  The ENT was the one who saw what was happening and did the antibody testing and u/s, which provided the dx of Hashi's.  He then referred me to an endo, from whom I'm getting good care.  While I suffered needlessly for months, my story is not unique because the manner of treatment that I was getting from my pcp (former) is more prevalent than I care to think about.  

In my opinion, I believe that a patient who suspects thyroid issues should make every effort to get as much testing done as possible; this process usually begins with the basic blood work, but should by no means ever stop there........... diagnosis should utilize every possibility that medical science has to offer, including BOTH blood work and ultra sound, biopsy or whatever it takes.  

After all, the patient's well being is the most important factor.



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1425146_tn?1282765484
First off, when I said many members of this community, it referred to members of the clinical community, in context with what I said, but easily misunderstood.

I have bloodwork every month, sometimes more, my doctor trusts my judgement that if I feel i need another bloodworkup, he will do it at will. This has been very important as I have swung from hyper to hypo thyroidism this last year. Dosage has been an issue to as I no longer need beta blockers, and virtually no xanax, but have not gone to a synthetic substitute yet.

My family problems were just diagnosed upon my Mothers death, I had normal labs for years, including last months labs which were in normal range, in September I was out of range. It has made it very difficult to finally diagnose. One of the issues with my current Doc is I did not acknowledge my Mothers cause of death, my thyroid storm happened immediately after my Sisters death, and there was no reason to believe we had a family history prior to that time.

There is a typo in the first sentence that I did not finish, but it was meant to say why would such a book be written, if the circumstances around it were not happening every day.

I don't want to argue with others about anything in medical testing. What I found, that finally worked for me is not a snub at blood testing, saliva testing, toleration testing, or fine needle biopsy of which I've had 2 and am scheduled in Dec for another as my sonogram Monday shows 14 cm of growth this month and both tumors have grown as well. A new one appeared that is small in size (about 3cm by  4 by 3). I just want to present my personal experiences if they can benefit others who have fears of the unknown. That's my goal, to help others get diagnosed and feel better.

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Avatar_m_tn
Thanks for your input.  I think I'd have to say that at this point I consider the sonogram/ultrasound test as a useful supplement to other indicators used in diagnosis, rather than a substitute.   I do have very little trust in the outcome of blood testing, as it is currently being practiced by most doctors.  I have very little regard for the TSH test, especially when as it is frequently used with an obsolete range.  I have yet to find any statistical evidence that it even correlates adequately with the biologically active thyroid hormone FT3, or even FT4, much less with patient symptoms.  Yet TSH continues as the "Gold Standard" of thyroid testing and contributes greatly to the widespread misdiagnosis and mistreatment of thyroid patients.  This a link to a very good article, written by a doctor. that was posted just recently.  The doctor relates a very useful history of thyroid testing and why TSH became so predominant.  He also clearly relates his disdain for TSH testing and promotes a return to symptoms- based diagnosis and treatment.

http://www.thyroid-info.com/articles/david-derry.htm

In addition, I'm convinced that even when other blood testing is done, it is often the wrong tests and the wrong reference ranges.  I fail to understand why the doctors are so reluctant to test beyond TSH, TT4 and TT3.  Why not use the far more important FT3 and FT4?  Doing this would go a long way to increasing the utility of blood testing.   Also, studies have shown that FT3 correlates best with hypo symptoms, while FT4 and TSH did not correlate at all.  If FT3 and FT4 testing were adopted as the primary tests, I think the biggest remaining obstacle to having reliable blood testing would be the current reference ranges for FT3 and FT4.  

These ranges have never been corrected as was done for TSH over 8 years ago.  The AACE revised the ranges after deciding that there were many more hypo patients than their TSH range predicted, and accordingly there were included in their data base many patients that were suspect hypo.  When they purged the data base of such patient data and recalculated the range, it was greatly reduced.  

Having some background in statistical analysis, I would estimate that if the data bases for FT3 and FT4 were similarly purged, that the recalculated ranges would be approximately the upper half of the current ranges.  I firmly believe that this is the other big reason that blood testing has the reputation you mention.  Many doctors don't want to treat patients clinically, they just look at the blood test results and if they are in the "normal" range, they pronounce that nothing further is required.  I think that is why we hear from so many thyroid patients with test results in the lower end of the ranges for FT3 and FT4, and have been told they are normal, yet they continue to suffer with hypo symptoms.

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1425146_tn?1282765484
Thanks gimel, you have always had very interesting articles to read in my opinion, and great research you've done on your own. Our conversations before have related to the inability, at times, for blood work to be highly accurate. I have asked both the ATA and 2 mfgs of test equipment for comment on this and both defer, except in private conversation.

When someone is sick, my belief is to use EVERY available tool for diagnosis. Just like in trading stocks, there is no "holy grail" of success in any test for thyroid disease today.

I would also highly agree with your note that so many doctors just want to look at a blood report "in range", so they can tick that off quickly on the suspicions list. That almost cost me my life. Prior to diagnosis, I had had over 20 "in range" blood tests, including 1 that was 2 days prior to a thyroid storm. We need multiple test protocol for thyroid disease is the one point I would really like to make to those in the "clinical' community.

Best
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Avatar_f_tn
I was mis diagnosed for 6 months with depression....It took my dad to notice my neck had swollen to look a football lineman's neck. It was very noticeable to him considering I was down in weight to 88lbs. I actully went in to the dr. after hours and it took another dr. 30 seconds to diagnos hyperthyroidism. I was in a full blow thyroid storm by then, so needless to say I was hospitalized for two weeks the first time.

I was young and naive back then (23yr), so I believed my PCP, who by the way NOT ONCE in the 6 months she was treating me did ANY KIND of blood work....It was all due to depression....it makes me angry now when I think about it, but I survived & live my life like nothing every happened. I am 40yr now.
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Avatar_m_tn
I agree with the need for multiple test protocol for thyroid disease.  I also know that we need to improve the blood testing aspect.  You might be interested to know that I've been communicating with the AACE, asking questions about their assumption that TSH should be primary in testing and diagnosis and also asking why the reference ranges for FT3 and FT4 have not been corrected as was done for TSH.   To try and stimulate some reassessment, I provided some links to studies that show that FT3 correlates best with hypo symptoms, while FT4 and TSH did not correlate.   I also questioned whether TSH even correlates with the actual thyroid hormone levels, because of my inability to find statistically valid evidence of that.  At present I am still waiting on their response.
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1425146_tn?1282765484
It's been my experience, you may wait a long time. A very long time, but best of luck in this as it has validity. The clinical community sometimes reacts very strongly about suggestions/corrections/questions of their dominant stature. Hopefully that won't be the case here.

I want to wish you the best of luck with the AACE and please continue to send me the articles like you have done. We are posting them on the Foundation's website.
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1425146_tn?1282765484
Glad you have overcome, you can be a positive voice on this Board. Please help others with your experiences. over the years, and before you were diagnosed as well. Welcome.
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Avatar_f_tn
I agree wholeheartedly that the current ranges used for FT3 and FT4 testing require far too much subjective interpretation.  Many in the medical community do not understand how to interpret the concept of "range" and do not allow for individual or "personal" ranges within the population range.

The population range merely defines the "playing field".  It attempts to define the upper and lower limits within which most people will be relatively "safe".  However, it totally ignores individual difference.  Unfortunately, but also unavoidably, we each must find our own personal "comfort range" within the population range (and in some case, outside of it).  Within a population range of 0.8-1.8, for example, I might be comfortable from 1.0-1.2, and your personal range might be 1.4-1.6.  There is no way to adjust population ranges to take this personal range into consideration.  I'm afraid the only answer is in educating the medical community about the limitations of testing and the importance of symptoms.

In addition to thyroid disorders/diseases, there are a number of metabolic dysfunctions that cause fundtional hypothyroidism at the cellular level even though lab values are "in range".  I think we'd all agree that slow conversion is the biggest culprit here, but there are a number of other more esoteric conditions (RT3 dominance, resistance syndromes, etc.) that make the standard thyroid tests unreliable.

Antibody testing, if adequate, is an excellent diagnostic of Hashi's.  TPOab and TGab are both necessary.  Although a positive TPOab is considered sufficient for diagnosis, some of us with Hashi's are only TGab positive, so a negative TPOab is not sufficient to rule it out.  In addition, TSI for Graves' should be run if there is any question whatsoever of a differential diagnosis.

My feeling is that antibody testing is accurate and the acid test for autoimmune thyroid disease.  I agree with both Barb and gimel that we always recommend U/S once anyone has a diagnosis of any kind of thyroid dysfunction.  Your family story is tragic, but it reeks of incompetance.  A thyroid 10% of normal size or one that has 45 nodules should not even require U/S to diagnose..thyroid palpation should be sufficient (followed by U/S, of course).  

Unfortunately, I believe that education of the medical establishment is the only answer.  This is a very slow process as incompetant doctors continue to educate medical students, perpetuating the cycle of abuse (yes, abuse).

I believe the answer to "Why do I still have thyroid symptoms when my lab tests are normal?" is a simple one, but will take generations of doctor training to remedy:  because ranges are flawed and testing is often incomplete.  






  
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1425146_tn?1282765484
I believe your last 2 paragraphs say it all, and very well at that. Re-education of the clinical community is imperative, and some of the treatment both myself, and my family members have received is abusive.

Wonderful post.
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798555_tn?1292791151
I just had a follow up with a supposedly 'well respected' although 'old school' endo. Total waist of time for me, and a waist of money.

Another TSH worshiper that thought I should decrease med even though I have slight hypo symptoms. Used outdated lab ranges and tests. Will post a new thread on this.
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219241_tn?1413541365
In my experience, of bashing my head against a brick wall, for over 15 years, losing my kids to their father (who assumed I was a drug addict), having severe depression, trying to convince doctors I DID have something wrong, just proves a point of what I just read by yourself, Thyroidhunter.
  I begged them to do something, apart from the stupid blood tests. Of course I was always in range! (grrrrrr stupid Australian ranges are not the same as US ranges) 15 long suffering years later, and a large goitre strangling me, an Ultrasound was requested. Woohoo! FINALLY, 10 nodules on one side and who knows how many on the other. Got opened up, and ta-da! a diagnosis of severe Hashimoto's. Pity I wasn't awake at the time, else I would have done a big, Told ya so!
Few months later they discovered a lovely reason for taking out the other side. Hurthle cells.
  Now we move forward 3 years later, and I still am having huge issues. Recently an ultrasound was ordered to see if any there is any remaining tissue.  Did not show anything. My endocrinologist argued for checking remaining tissue after a TT, an ultrasound is useless. It needs to be a radioactive iodine supported CT. So as you have said, one specialist/doctor will believe one thing and another something else entirely.
   There doesn't seem to be any agreement on treatment or diagnosing patients with any type of thyroid illness. My endo growled at me for lowering my dose, and wasting time yet I was ordered by my GP to do so as I was dangerously hyper. A patient can be made to feel stupid and many often just do give up ( I refer to other diseases as well as thyroid) If there is no collaboration between the medical professions, how is a patient supposed to fight and/or know what to do?
   Education of both the public who know very little about their illness and the professionals is the very main thing in my opinion on getting this rotten disease under control
  Breast, bowel, prostate cancers, heart and diabetes diseases are very much well advertised and pounded down our throats to get checked. But thyroid disease? Pffft! No wonder doctors and the public know so little and yet is more common than any other disease!

I say to anyone, talk about this disease to all and sundry. Bring it up in conversation. I have a lovely scar and in the summer time notice people looking at it, I then will say No I didn't try to do myself in, I had my thyroid taken out. Invariably it leads to a great conversation and many of the people I have spoken to have had symptoms and gone to their doctor to find they too, have thyroid disease. I always have a grin on my face when they thank me for convincing them it wasn't menopause/dieting/stress/insert what other excuse has been given.

Ok that's my soapbox for today!
Cheers!
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1425146_tn?1282765484
Even with a less than stellar start, we've gotten some good dialogue going that has got to be useful, most especially for those yet undiagnosed. LazyMoose makes such a good point about what is essentially a huge waste of time and money going to old school total TSH endos and getting nothing for your money, forget the time. This is so typical of what' happening all across the globe - Today.

RedHeadedAussie, you are my girl! What a post. We've been down some of the same roads together and I could not have said your points better. In addition, your sharing of your experiences with others is golden. Thanks for the SoapBox All!

Keep it going if you have a point, even if it's similar.
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393685_tn?1325870933
just bumping this up. Hope to have some time this weekend to post.
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Avatar_m_tn
Totie, this was my exact experience also. At 22 I was diagnosed with depression. I moved back in with my parents' and switched to my family's GP who treated me with anti depressants for an alarmingly long time with the notion of "Just stick it out and the medication will help you" it was my mother who in fact suggested I might have hyperthyroidism as she was reading up on it at the time due to my sister's goitre. My mother literally had to ask my GP for a blood test to check my thyroid function and she felt so pushy. Looking back now, my symptoms were totally classic thyroid. It is such a shame as it set me back 6 months of my life where I couldn't move on with anything.
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1425146_tn?1282765484
What are your thoughts, if the situation is such, about losing time in your lives to undiagnosed disease?

Has it changed your view of the Medical Community in general? How about your opinion's of the "practice of medicine?" We all know it's still practice, so many still can't get it right.

Are you more likely now or now to "question" the dominant authority our physicians in this Country are so likely to have? It is a problem peculiar to this Country, as socialized medicine throughout Europe has taken away the "mystique" of the power of the doctor there. I got a house call last month at my home in France for 34 euro, and 4 prescriptions for food poisinong. He came less than 3 hours after being called.

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?

I darn sure don't.
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734073_tn?1278899925
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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1323747_tn?1364810482
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
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Avatar_m_tn
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
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Avatar_f_tn
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.
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649848_tn?1357751184
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.
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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!
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I am from the UK and all my medical treatment (I am able to get a same-day appointment with my GP but must wait for up to 2 hours first thing in the morning) has been free.

I get very upset when I think about the time I lost out on whilst waiting to be diagnosed - my early 20s were so crucial, I graduated from university and then just got really ill and fell off the radar.

When I was fist diagnosed I really tried to fight against my doctors, I was angry and frustrated, emotional and paranoid. Now I just feel thankful for my health and to know what is wrong/how to deal with and explain it to other people. I see my GP and an endocrinologist, I am interested to learn about my condition and they don't patronise me; I know how my body feels and they will always offer me a blood test or change in medication should I feel something is not right.

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I'm really sorry to hear about your case. Before I was first diagnosed (hyper not hypo) I faced a lot of criticism about my weight. Whilst I was eating really well I just kept loosing it to the point where people assumed I was anorexic and would stop my mum in the street when she was with me to comment. It was a really difficult time for my family.

I really hope that people can be educated about thyroid disorders, before I was diagnosed I had never heard of it but once I started telling people they would usually know someone who suffered from it. It is such a hard illness to go through - it can be so debilitating, and I think it is really good to talk about it.
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The medical world today scares me in so many ways...I have been misdiagnosed in the last 3yrs for conditions that required surgery.

Yes the first was 16yrs ago for graves/hyper/toxic goiter (labeled depression) suffered for 6 months & hospitalized twice due to not being treated in time. Had a 4.5cm complex cyst on my ovary that without testing diagnosed as constipated...it was 2cm but had grown in 2 months to 4.5cm. I had an infected submandibular gland with a cyst & some lymph nodes that where infected as well. (This was diagnosed as heartburn). I had a fallen bladder (explained my constant urination), they told me I was just drinking to much liquids. Finally they did a ct scan and discovered my bladder had fallen....They discovered a tumor underneath my aorta behind my abdominal wall. Since I had been misdiagnosed so many times in the past they decided not to risk missing cancer, so they had to remove it. The last one was my shoulder, they kept telling me they don't know why my shoulder hurts. Finally after 2 yrs they did an MRI...I had inflammation/fluid & a cyst, so of course surgery was needed....

I have no confidence in the medical world. I will go to the doctor only when it really is an emergency. Like maybe only if I am hit by a car or something..
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I spent years, being fatigued to the point of "no return" and was always diagnosed as being "depressed"; one doctor even accused me of being an alcoholic because my red blood cells were larger than normal; he said alcoholism is the *only* thing that causes that - turns out, I have pernicious anemia, which also causes it.  

During those years of fatigue, my weight was also going up and down - once down to 75 lbs when I was 46 yrs old - no doctor ever even suggested checking my thyroid and at that time, I had no inkling there could be an issue there.  

I think it's a total shame that so many of us have/had to argue, beg and plead with doctors to get the treatment we need.  I currently have a very good friend going through a similar situation with her doctor - normal TSH, VERY low normal FT's (FT3 is as low as it can go and still be in range), and the doctor won't treat because her levels are "normal".  This friend went through the same thing last year and I had a really hard time convincing her to go back to the doctor again; now, here she is - still hypo as heck (a lot of the symptoms) and still hitting a brick wall....Now she's afraid of being pegged a hypochondriac -- so she will stay sick for another year or longer, until her TSH actually shows hypo before she will get treatment.............. such a shame!!

I can't help wondering what it's going to take to get doctors to change their way of thinking, so they pay more attention to the patients.  I would like to find a different pcp, but am so afraid that if I change, the new one will be even worse than the one I have........
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Thank you for your terrific thoughts on this thread. Can we talk about your comments and something we may can do for those in the future? I fear that time lost cannot be recovered and the only thing that matters is to effect change.

From: Magpieannie,
"Doctors that commonly blame symptoms on everything else!" "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!"

From:Barb135
"It seems that most of us have our "horror stories" of how we have been treated by doctors, including myself "

From:RedheadAussie:
"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." "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. "

These comments, and so many others in my opinion, tell us a couple of things, Med Schools are not teaching a multi protocol attack on the disease, and far, far too many people, especially women, have been told - "It's all in your head." This is not an acceptable performance in the practice of medicine. It is very much the norm or so few would be quickly diagnosed and out of fear/depression and pain much quicker. We are not smarter than a 5th grader in our research of thyroid disease and dysfunction. It's our job now to let the medical and clinical research commitees know we are "NOT PLEASED"

Gimel has been fortunate, myself as well, to find a "Healer", a whole body student of the practice that looks to all parts of the body for solutions and keeps up somewhat on current medical changes and knowledge growth. It appears so few have this? Is it a matter, like goolara says that competition is lacking and fears of malpractice have physicians huddled in fear to go out on the limb past a simple blood panel? I think a combination of the two is an issue, but not the reason those of us with thyroid disease have many times suffered long and very hard for the lack of proactive, multi pronged, protocol of diagnosis.

I am also lucky to be close to my Doc, and a golfing friend. I get some hours a month about the "business" of medicine, and it's not that hot. The economy has hurt many doctors and the rush to use MA's (medical assistants), instead of RN's, LVN's, and PA's (Physician's Assistants) to shed costs in their offices is contributing to an ongoing problem of diagnosis. But that alone, also, in my opinion, is not the root cause. The med schools and medical protocols must be addresed.

Maybe like a Boston Tea Party, but it's past due.
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I am so new to all of this but find it very interesting.  I am 48, have 7 kids and work in the OR at a local hosp.  I started complaining to my Dr about 18 years ago.  Never felt good.   He has tested me yearly for thyroid, always just TSH and it has always been WNR.  So he would say to me ...".you have lots of kids".....".you need to drop some weight"....".stress will make you sick".....then the real whopper....."you keep blaming your thyroid for everything, its like taking your car to the shop and saying it wont run right check the tires and the tires are fine"!!!!  So 6 years ago a DO sent me for a scan, several nodules, recommended FNA, my regular doc said not to worry about it my blood work was fine.  sigh

So 3 months ago I felt desperate for help and went to my GYN and asked her if she would run another scan , she said lets do blood work first.....called me to let me know its fine come back in a year.  I finally asked an ENT at work 2 weeks ago to look at the old scan and he immediately sent me for a new one......its not looking real great at the moment.  He has scheduled me for a thyroidectomy Nov 4.  The gland is enlarged, multiple nodules that have grown, microcalcifications and a few other things.  Said it was beyond FNA .  Also told me how upset he is that Drs rely on blood work when it never tells the true story.  

I am very thankful that he has taken such a progressive stand.  I am very worried and scared but so thankful for a good Dr. After years of feeling like a hypochondriac I hope this will be the year of recovery.  
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