Thyroid Conditions
July 2004
I would love to hear from anyone who has had success getting
treatment for hypothyroid at Kaiser. I was diagnosed with a THS
test in April and have since had my medication increased three
times after subsequent THS tests, and if anything I have more
symptoms than at the start(hair loss, muscle spasams, memory
impairment...etc.,etc.). Some initial research indicates that
more tests and other medications might help, but my doctor is
convinced that the THS test and continuing to increase the
Levothroid is the best course of action (hasn't referred me to
endochronology and won't run T3 or T4 tests). In the meantime,
my plans and life are on hold. I would love to start planning
for my second baby, but have had 2 miscarriages and really want
my thyroid levels stabilized before I can even think about being
pregnant again. I am eager to hear from someone who has had a
similar challenge and find out how they navigated their way
through Kaiser (I'm at Oakland but willing to travel).
Becoming desperate
Greetings - Your post immediately raises several red flags for
me. I too have been a Kaiser patient for many many years and
in general have been most happy with my treatment there. In
fact, we had both our kids at the Oakland Kaiser and have found
the pediatric care to be first rate for over ten years.
However, upon learning and beginning to treat my Papillary
Thyroid cancer and hypothyrodism, I've had for the first time
to go outside the Kaiser system. Firstly, it is imperative to
be treated by an endocrinologist. Secondly, it is critical to
be a fully informed consumer and your own best advocate (this
means knowing what drugs you are being given, insisting on a
full battery of tests (on a regular basis once stabilized
medically) and having your symptoms better regulated. I was in
the care of the local Kaiser Oakland endocrinologist initially,
but found he was too much of a biochemist for me and not at all
in synch with my need to better understand my condition or
manage it in a way I could relate to. Thus, for the first
time, I am in the care of a private physician, Dr. Nathan
Becker. Dr. Becker is a total expert on thyroid disease with
an office on Parnassus in San Francisco where he is affiliated
with UCSF. These bi-annual visits are worth every penny for
his counsel and care. As an example, he recently pointed out
to me that Kaiser has switched its synthroid provider to a
generic, and feels this medicine does not have the same
pharmecutical purity as the name brands, and has recommended
that I stick to the non-generic. And since I totally trust
him, I am following his advice. If you can't go outside the
Kaiser system, it's worth traveling to other Kaiser facilities
until you find a great endocronologist. I've been dealing with
this issue now for four years, and recall hearing that the
Walnut Creek facility had a good doc, but I found Dr. Becker
and never pursued that avenue. So, in a nutshell, I think
Kaiser is outstanding for many things, but again, on occaison,
it is necessary to put your health in the best possible hands
and that may mean going outside the system. For me, it has
been worth the extra expense to have the peace of mine and
sense of well-being that being in Dr. Becker's expert care
brings. I hope you get lots of good recommendations and start
to get the care you need. Best of luck.
Fellow patient
There's an excellent endocrinologist at Kaiser in Vallejo who is
very knowledgeable about thyroid issues: Susan Stevens. Feel
free to email me for more information.
Julia
I had postpartum thyroiditis and was referred by my personal
physician to Dr. Basian, one of the endochrinologists there.
She was fantastic! Switch primary MDs if you can't get a
referral to the specialist until you can.
Euthyroid now
Wow, I can identify with your struggle with Kaiser and
concern over fertility. A few years ago I began having severe
fatigue, hair loss, night sweats and altered periods. I can't
remember if I had picked a primary md yet but I saw 4
doctors over a 9 month period. My thyoid levels were tested
and I had signs of mild hypothyroidism. I was placed on a
small dose of synthroid which did nothing for my symtoms.
One practicioner just off hand suggested I might be going
into menopause. This really upset me. I was not at the
time trying to get pregnant but I was 36 and wanted the
option to. I insisted on seeing an endocrinologist. A nurse
friend of mine suggested I see an OBGYN that specialized
in endocrinology and fertility. I found Janie Hirata. She is
an excellent Kaiser doctor. She took a thorough set of lab
tests and explained to me, in simple terms, the delicate
balence between the hormones in the endocrine/
reproductive system and how they can affect one another.
Also how stress and nutrition can influence the balence.
For me the thyroid was not the problem. I was able to make
some lifesyle changes and the symptoms resolved. It took
a long time and lots of phone calls and waiting on hold to
finally get the care I needed. My advice is to insist on a
specialist and be persistant. Good luck to you. Email if you
want to talk further.
molly
I was diagnosed with Hypothyroidism(at Kaiser) about 13 years
ago when my first son was 6 mos. old.
Actually, Kaiser didn't diagnose me....they had no clue as to
what my symptoms were about...they were going to send me to a
neurologist because my speech was slightly distorted....in the
list of hypothyroid symptoms this is called ''enlarged
tongue''...they sent me for a CT scan. While I was waiting for my
CT scan I went to the Kaiser library and looked in a book of
symptoms. I had almost every symptom listed under
Hypothyroidism....even then the Dr. said ''nah, you don't have
it''....3 days later he called me with my blood test results and
said ''you have hypothyroidism''....I already knew.
That said.....I'd like to recommend a great book called ''Living
Well With Hypothyroidism''...I forget who it's by. You can get it
at Amazon, and I think The Vitamin Express in Bkly, and probably
Whole Foods, etc. The woman who wrote it explains her ordeals
wit h the medical profession and how she came to do her own
research.
The symptoms of hypothyroid can be misleading...anxiety,
constipation, coldness, hoarse voice, speech wierdness etc.
I think ALL Dr.s will tell you that the TSH test is the only
test you need. NOT TRUE!!! There are at least 2 adn maybe more
different thyroid hormones and they serve different functions in
the body. TSH mostly tests T-3 (not positive about that...it's
been a while since I've read about it), so if T-3 is sufficient,
but another hormone, is not, the TSH is not going to show
that....
You have to insist on the entire test. Then don't wait for them
to contact you....call a few days later and get your results.
Ask them what is the range of normal..low end of normal, and
high end of normal, and where you are in that range.
I've hear stories from so many people that their TSH is normal
and they're still having symptoms.
There are some supplements you can take that will enhance
thyroid function, but if your thyroid is not working at all you
s till have to take the synthetic hormone.
There is also Armour Thyroid which is a natural form of the
hormone. It's made from pigs (to sound more polite they call it
bovine thyroid). Kaiser won't even consider prescribing that.
You might want to go outside Kaiser and see a more wholistic
minded Dr.
I take Synthroid, or Levathroid...different brand names and have
since the beginning. I don't have a problem with that, although
I am actually very ''drug'' opposed. This made sense to me and as
far as my own research went didn't have any adverse long term
side affects.
It's been 13 years now. I get blood tests about twice a year to
check. Other then when I was pregnant, my test levels stay the
same.
Good luck getting more help and info. You'll have to be your own
researcher and go to Kaiser with information and stick to your
guns in getting what you want.
June
January 2003
A routine blood test came back with my TSH is abysmally low, and
my Kaiser MD has ordered a thyroid scan. I checked the website,
but there are no Kaiser Endocrinologists mentioned - I'd very much
appreciate any recommendations, as I don't think I want to simply
rely on my primary care doctor - my clinical picture may be
complicated due to a history of hyperparathyroidism from a benign
tumor years ago.
=asymptomatic excerpt for nervousness!
Hi,
I saw Dr. Amar Budayr at Kaiser Oakland last October. I saw him
only once but I thought he was caring and very competent. He took
some cell samples from my thyroid to be analyzed, and took all
the time necessary to do that and to answer all my questions. A
few days later he personally called me to let me know of the
results of the biopsy, which were negative, and said he had
written down in his calendar to call me again in 6 mo. for the
next check-up. I felt I was in good hands with respect to my not
so worrisome thyroid problem.
Irene
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