Re: My RE does not have a clue - frustrated! Amy / Terese
From: summer (anonymous@obgyn.net)
Sun Jun 29 21:12:45 2008
Sorry, it was Terese who had the problem with the RE! Got the names
mixed up
http://www.thyroid-info.com/
''Understanding the TRH Test
To understand how the TRH Stimulation Test works, it's first helpful to
quickly review how the various brain hormones interact with the thyroid.
Your hypothalamus is a gland in your brain that secretes thyrotropin
releasing hormone (TRH).
When TRH is released, it stimulates your pituitary gland -- also in the
brain -- to release thyroid stimulating hormone (TSH).
TSH stimulates the thyroid itself to make thyroid hormones.
Most practitioners consider the best test of thyroid function to be the
TSH test, which measures the circulating level of TSH in the bloodstream
at one point in time. The TSH test results are then interpreted; levels
higher or lower than a so-called normal range are considered evidence of
potential thyroid disease.
The TRH test is different. A baseline TSH test is done. Then you are
given an injection of TRH, which stimulates the pituitary to release
TSH. A second blood sample is drawn 20 to 30 minutes later, and the TSH
level is retested. TRH is known generically as protirelin (pronounced
proe-TYE-re-lin).
The TSH test is a picture in time of circulating levels of thyroid
hormone. But by challenging the thyroid, the TRH Stimulation Test
evaluates the thyroid's actual ability to function in real life.
How Does the TRH Test Differ from the TSH Test?
One way to look at it is to consider the difference between the TRH
Stimulation Test and the TSH test, much like a cardiac stress test is
compared to a cardiogram, or a glucose tolerance test is compared to
fasting glucose level. In a stimulation test, the challenge may reveal
an impairment in the thyroid.
Routine Blood Tests are Often Inaccurate
Routine Blood tests for thyroid function measure the amount of TSH, T4,
and T3 in the bloodstream. But thyroid hormones don’t operate within
the bloodstream; the action takes place in the cells themselves. Blood
tests are measuring how much thyroid hormone is swimming around in the
blood stream, but not what is in the cell. This is why the TRH test is
so important.
Traditional medical professionals know that thyroid blood tests are less
than perfect.
The Journal of Clinical Psychiatry has reported: Laboratory blood tests
for thyroid may be inaccurate for many who get tested for hypothyroid
disorder.
Compounding the problem of using standard blood tests to diagnose
hypothyroid is the inability of doctors to agree on the laboratory
parameters. According to the American Association of Clinical
Endocrinologists (AACE) guidelines, doctors have typically been basing
their diagnoses on the "normal" range for the TSH test. The typical
normal TSH levels at most laboratories, has fallen between the 0.5 to
5.0 range. Those with a TSH below .5 are considered to have too much
thyroid hormone (hyperthyroid). Those whose test results are above 5
are considered to have too little thyroid (hypothyroid). However, it’s
not uncommon to find doctors, including endocrinologists (thyroid
specialist), who withhold the diagnoses and treatment of hypothyroid
until a patient's TSH tests read considerably above 10. While some
doctors believe that anyone who has a TSH above 2 and complains of
hypothyroid symptoms (depression, fatigue, brain fog, etc.) should be
placed on thyroid hormone. While doctors often debate which parameters
or numbers are correct, millions of low thyroid patients are not
properly diagnosed and treated.
“You have all the symptoms of hypothyroid but your blood work looks
fine.”
Patients often relate that they, and sometimes their doctors, suspect a
thyroid problem only to have their blood work return normal.
Doctors are typically reluctant to prescribe thyroid replacement therapy
without a definitive test that reveals true hypothyroid. They’re afraid
that by doing so, they would jeopardize the health of the patient. And
true, excess thyroid can cause several unwanted health problems,
including elevated heart rate, rapid pulse, and accelerated bone loss.
However, millions suffer with symptoms far worse then these when
prescription therapy is withheld.
Certainly the dangers of thyroid replacement therapy should be a
concern. But, if you weigh the pros and cons of administering thyroid
replacement therapy to a patient with normal blood tests, yet all the
symptoms of hypothyroid, fatigue, anxiety, depression, achy diffuse
pain, weight gain, etc., it's easy to see that withholding therapy
should be considered malpractice. This is especially true in light of
the fact that many of these patients are taking numerous, potential
dangerous drugs, to cover-up the symptoms of hypothyroid; Provigil or
Aderall to increase energy, antibiotics for chronic sinus infections, a
laxative for constipation, NSAIDs for pain, SSRI medication for
depression, Neurontin for tingling in the hands and feet, and perhaps a
benzodiazepine like Ativan or Xanax for anxiety. All of these drugs may
cause side effects that may cause further symptoms (poor sleep, fatigue,
depression, etc.). It’s not uncommon for my patients to be able to
drastically reduce or eventually wean off these very medications once
their thyroid disorder is corrected.
New Developments
To complicate matters, the parameters for determining who has a thyroid
disorder, and who doesn’t, has recently been changed. The new
guidelines narrow the range for acceptable thyroid function; the AACE is
now encouraging doctors to consider thyroid treatment for patients who
test the target TSH level of 0.3 to 3.04, a far narrower range. The
AACE believes the new range will result in proper diagnosis for millions
of Americans who suffer from a mild thyroid disorder but have gone
untreated until now.''
http://patientsmedical.com/ThyroidTest.html?gclid=CMTfhKeMm5QCFQNfFQodkHdttA
At Sun, 29 Jun 2008, summer wrote:
>
>If an endocrinologist only goes by one or two numbers, they will not
>treat your thyroid in a way that might be helpful to someone who might
>have a thyroid problem that doesn't show up in those tests. You need to
>find someone open to new ways of looking at thyroid issues, instead of
>going by the old school book. Perhaps it's hard to understand because
>you're used to that older way of looking at things? A doctor who will
>look at your symptoms and not JUST the blood tests can be a huge help.
>So many doctors - men who went to med school years ago - just look at
>one or two thyroid numbers. The range of the thyroid tests is a
>compromised group of people, and one has to be aware enough to
>
>I didn't catch your name, but if you'd like to learn more, please see
>Mary Shomon's sites. She's amazing. You can have a thyroid problem,
>and if you feel tired and all the other thyroid symptoms, you need to
>keep going until you find someone to help you. I saw several
>''regular'' endocrinologists, and they were not able to help me. My
>thyroid problems got worse. Again, if you see Mary's list of doctors,
>you'll have more insight. Any endocrinologist can treat a blatant case
>of hypo- or hyper-thryoidism. if you're at the beginning of having
>problems, you might want to find someone who is more sensitive to what's
>going on with women in the way that Mary Shomon writes of. It's clear
>that Amy (I think that's her name) hasn't found someone who thinks
>people can have a thyroid issue if her number(s) is/ are within
>''normal'' range.
>
>When I went to the first RE, I thought they'd know things about
>progesterone, thyroid, any hormone. No, not really. Not speaking of
>all of them, but they know about chemical means of manipulating
>fertility, for the most part. And they know almost nothing about
>treating endo with excision surgery.
>
>At Sun, 29 Jun 2008, anonymous@obgyn.net wrote:
>>
>>Summer--by "new" things, do you mean alternative medicine? An
>>endocrinologist should be well qualified to diagnose and treat a thyroid
>>disorder. I'm a little unclear as to what you meant.
>>
>>At Sun, 29 Jun 2008, summer wrote:
>>>
>>>One of the problems with even a ''regular'' endocrinologist is that if
>>>they go by just one or two numbers, they won't treat the thyroid
>>>problem...You need someone who's a little open to trying new things.
>>>
>>>At Sun, 29 Jun 2008, anonymous@obgyn.net wrote:
>>>>
>>>>Terese--After reading about the difficult and complicated referral
>>>>process to see a specialist in the UK I felt so relieved that our system
>>>>here in the US still, for the most part, allows us a lot of freedom in
>>>>making our OWN choices about our care. i think you have way more than
>>>>enough reasons to find a new doctor. Just being uncomfortable with his
>>>>treatment of you is enough, not to mention being treated rudely by his
>>>>staff, his not sharing test results with you, ignoring troubling
>>>>symptoms, etc. Please don't feel like you are doing anything wrong in
>>>>seeking out a Dr. with whom you can have a trusting relationship. Most
>>>>of the time, the new Dr's office will even handle the request to have
>>>>your records transferred to them. ( I do think you ought to go with the
>>>>recommendation to see the endocrinologist, though. I believe their
>>>>training and focus varies greatly from that of an RE. ) When I first
>>>>developed symptoms of endo I saw a new gyn who really left a bad
>>>>impression at my first appointment. She kept explaining all my endo
>>>>symptoms away as something else and made me feel like I was whining
>>>>about nothing. I ignored my first impression and let her treat me
>>>>anyway--very bad idea. I won't EVER make that mistake again. Good luck
>>>>to you in your journey!!!
>>>>
>>>>At Sun, 29 Jun 2008, Terese wrote:
>>>>>
>>>>>Okay, so I have had endo for quite some time now. I have severe pain
>>>>>and can't get pregnant. I have had 2 laps, both of which have not
>>>>>helped with pain. In addition to endo symptoms, I have had a number of
>>>>>other weird symptoms like 2-3 weeks straight of bleeding (like an
>>>>>extremly long period), my hair falls out like crazy, at one point my
>>>>>breasts shrunk down about 1/2 my size (that freaked me out), my
>>>>>progesterone is low, my testerone is slightly elevated, I'm cold all of
>>>>>the time and I have other odd symptoms as well. I explained all of this
>>>>>to my reproductive endocrinologist, but his only concern was putting me
>>>>>on clomid or doing in-vitro. He was not concerned at all with all of my
>>>>>symptoms.
>>>>>
>>>>>Before jumping into all of these costly and possibly unecessary
>>>>>fertility treatments, I asked him to do a thyroid panel. He refused to
>>>>>do a full thyroid panel, but did test my TSH. The TSH came back high
>>>>>and he didn't even say anything about it! I asked for a copy of my test
>>>>>results and found out on my own. During my last appointment, I brought
>>>>>my TSH level up and the nurse practitioner (since my lap, the the nurse
>>>>>has been seeing me instead) and she tried telling me it was "normal".
>>>>>Luckily, I had articles and books that specifically talk about TSH
>>>>>levels (what is high and low) and how it impacts infertility. I
>>>>>presented all of this information to her, she looked shocked and
>>>>>uncomfortable. She excused herself and when she came back she said that
>>>>>she was going to have refer me to an endocrinologist. I mentioned that
>>>>>the doctor was a reproductive endocrinologist and I thought that he
>>>>>would be able to help me. She said that the thyroid was not his area of
>>>>>practice! Hello, if he is a fertility expert wouldn't you think that he
>>>>>should know about other issues/symptoms that impact ferility?
>>>>>
>>>>>So anyway, I'm going to see another doctor about my thyroid as well as
>>>>>some of my other hormone levels that are not right. I have done a lot
>>>>>of reading on the thyroid and how women with endometriosis are at higher
>>>>>risk for thyroid problems. What it has come down to is ME doing all of
>>>>>the reading and finding things on my own! It seems as though I have not
>>>>>had any doctors care enough to look at the root of the problem.
>>>>>
>>>>>Have any of you ladies with endo had issues with your thyroid? If so,
>>>>>who has been able to help treat you? I am hoping that this new doctor
>>>>>that I see next week can have an answer to my problems. I'm just tired
>>>>>of wasting my time with useless doctors!
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