Berkeley Parents Network >
Health & Medical >
Has anyone met an endocrinologist who understands the
connection between Fibromyalgia and hypothyroid? I'm looking
for an endocrinologists that will pay attention to and
understand the problems that surround high thyroid antibodies,
even if the TSH is considered ''within range''.
And as if that wasn't hard enough, I'd prefer that they take
Blue Cross HMO.
The book ''The Thyroid Solution,'' by Dr. Ridha Arem, is a fantastic
book about thyroid disorders. I am an internist myself, have had hyper-
and hypo-thyroidism, and became increasingly frustrated with the limited
knowledge of the *true* experience of thyroid disorders that most
top-notch endocrinologists have (there is an almost exclusive focus on
the numbers rather than symptomatology or a patient's experience. Dr.
Arem is an endocrinologist from Baylor Medical Center in Houston, and he
writes both about the clinical and the experiential aspects of thyroid
disorders. He also gives
specific advice on some dietary and lifestyle changes in
the book and on his website. I would highly recommend that as a place
I cannot believe it but I have gone from being Hypothyroid to
hyperthroid, due to a slight increase of my thyroid meds. I
started experiencing sweating,mood swings,inappropriate bouts of
crying, loss of appetite and weight,nervousness, muscular pain
in upper arms, decreased concentration and frequent bowel
movements. I thought my hypothroidism was getting worse and
visited my internist who agreed with me and incresed my meds .
Luckily, I insisted on getting my tsh tested and it showed that
I was at .03 which is low and indicative of hyperthyroid. I love
my internist, she is very caring, brilliant and attentive. I
should add that I was diagnosed 5 mos ago with hypothyroidism
and have been slowly increasing my meds( per doctor based on my
reported symptoms. The hyperthyroidism occurred after my med
went from 100mg to 113 !!!!
Is this a common scenario? I despair that I cannot predict how I
will feel emotionally, or whether my body will ache or if my
brain will be frozen.
I am desperate for support!
At 5 months after my diagnosis of hypothyroidism, we were still
on the medication roller coaster as well. As a patient, the
difficulty seems to be that the symptoms of being hyper and hypo,
especially when you are near normal, can be very similar. There
have been many times when I walked into a test expecting to find
out that I was over-medicated (with many of the symptoms you
described), only to discover that I was still under-medicated, or
vice versa. In my own case I seem to be especially sensitive to
being slightly over-medicated, and symptoms can be very
challenging to deal with in that range. It is also difficult to
live with the symptoms while you wait 4-6 weeks before you can
test again. (As a side note, I do encourage you to try waiting
the full 6 weeks if you can--often, after a dose change, my
symptoms will go really haywire at 3 weeks and settle back down
by 6. However frustrating, I always felt like I was getting a
better reading at 6 than I did at 4 weeks.)
I feel for you--those early months were tough. I can tell you
that it does get better. It took almost a year to get my levels
managed such that I was getting consistent, normal test results
and I was also feeling ''normal'' in the time in between. Try to be
patient (if you can!), and take care of yourself. Exercise and
healthy eating had a significant effect on me, even when my
numbers were off. Hang in there!
Best of Luck
I was diagnosed with hyperthroidism several years ago and it's
still a roller coaster ride as far as my medication. My
endrocrinologist said that even very slight changes in
medication can cause huge changes in your thryoid function. Are
you seeing an endrocrinologist besides your regular doctor? I
see mine every 3 to 4 months, depending on how stable things
were the last time, and I get blood work done before every
visit. TSH levels are only one way of measuring how your
thryoid's doing - can't remember the name of the other test I
have done off the top of my head. Thyroid stuff is pretty
tricky as far as getting everything balanced and the effects,
as you obviously know, of having things just a little off can
be huge. I'd suggest you get a referral to an endocrinologist
who can check things out thoroughly. Good luck!
I was diagnosed with hypothyroid 6 mo. after my 2nd was born at
age 33. I was initially put on 125 synthroid. This was fine
for a year. Then, I started having many of the symptoms you
described--weight loss, night sweats, insomnia. I went to the
dr. They didn't even check my tsh levels. No explanation--
they thought it was anxiety. A month or so later, still having
symptoms, I happened to read the product info that comes with
the meds and felt that all of my symptoms could be explained by
too much thyroid meds. I went to the dr. They tested my tsh.
It was still within normal range, but we reduced my meds to
60. I'm now back up to 80 and have been for 4 years with no
recurrence of ''overmedication.'' My dr. explained that even
when the tsh is in normal range, the effectiveness of the meds
can vary and she also takes into account how the
patient ''feels.'' I think it'll take awhile to find the correct
dosage. As I understand it, hormonal changes also make a
difference--starting/stopping nursing, birth control, etc.
ups and downs
I too have hypothyroid problems (in my case caused by a disorder
called Hashimoto's Thyroiditis) and have a lot of experience with
The standards for normal TSH range have been changed, and what
was once classified as too low is now okay and good- for some
people- and that is probably where your internist is coming from.
But the best gauge for each person is how they feel, and there is
absolutely no reason for you to be on a dose of meds that is
causing the symptoms that you describe!
I personally do best at 1-1.5 TSH, and the dose of Levothroid
that keeps me in that range fluctuates, so I get my TSH tested
about every 3-4 months. I also periodically have a Free T4 test done.
If your internist is reluctant to change your dose, first insist,
and if that doesn't work then get a new doctor. If I were you, I
would lower my own dose right away (not without notifying my
doctor that I was doing so), but I have a lot of experience with
all sorts of meds and feel comfortable doing that. A tiny bit of
difference in thyroid med dose can make a very big difference in
TSH and mood, so if you do that be conservative. If a lower dose
is what you need you will feel the difference almost immediately.
Has anyone out there done a one-time radioactive iodine
treatment for an overactive thyroid gland? I am currently on
daily medication for this condition (the generic drug
methimazole), but my Dr. says there can be serious side effects
when taking this drug long term. Have you taken such drugs
long term, and what was the outcome? Or, have you opted for
the radioactive treatment to shut down the thyroid--did that
work? Are you now using thyroid replacement drugs
successfully? Any info that anyone can provide would be so
Overactive Thyroid Mama
I went through radioactive iodine treatment when I was 21 and
have been on synthroid since (I'm 38 now). No problems really to
speak of - everything is completely normal but I just have to
take a pill everyday. I've been on the same dose all those years
and it hasn't changed even through 2 pregnancies.
I didn't really question it at the time since I was young and
apparently my thyroid was so overactive that I didn't have any
choices. Having gone through it though there are two questions
you might want to ask.
1. What will be the protocols you will have to follow right
after treatment. I got this kind of crazy list that included not
going within so many feet of anyone for 3 days because of the
radiation. If that is the case, how do you do that if you are a mom?
2. I've now got a serious hormone deficit. My mom who had hypo
and went straight to taking synthroid takes 35 mcg but I have to
take 150 mcg and I really notice it if I forget to take it in the
morning - by afternoon I am wiped out. I don't know if this is
because they gave me too much radioactive iodine, i.e. didn't
gauge it well, but I would question how close they can get it so
you only have to take a minimal amount of synthroid.
Over all, it really hasn't been a big deal.
I was diagnosed with a hyperactive thyroid about 6 months ago.
Since I'm still nursing an infant, I've been taking PTU (and for
a while, propranolol). Fortunately for me, my body has responded
very well to the medication and my thyroid levels are almost back
to normal. I'm hoping this means I can eventually return to a
normal, med-free life. (we'll see)
From what I understand, doctors in America opt for radioactive
iodine as a first-line treatment, while doctors in other
countries (Europe, Asia) prefer starting with drugs. As much as I
dislike taking daily meds, the thought of immediately jumping to
a permanent, irreversible ''solution'' is unthinkable. If you start
with drugs, the basic protocol is to go for up to 2 years and see
how your body responds. (Remission rates during this time are
about 60% with meds.) After that, the likelihood of remission is
low, so radioactive iodine is reasonable (better to take
synthetic hormone vs. chemical that attacks your normal body
function). However, anecdotally I've heard that once your thyroid
function is destroyed, it's a constant struggle to achieve the
right balance/dosage and your body doesn't respond as well to the
synthetic form as the real deal.
My recommendation, if you can tolerate the drugs, is to wait and
see if your thyroid returns to normal. Ultimately you may not be
able to avoid the radioactive iodine treatment, but at least
you've explored other options and given your body a chance to
heal on its own (with a little nudge from the meds).
--one who doesn't believe in starting with a hammer to every problem
Sorry to hear you're going through this. I did RAI almost 18
years ago (for Graves) after 2 years of trying alternative
treatments (homeopathy, diet, acupuncture). Then it took another
year to get my thyroxine levels regulated w/Levoxyl. I've since
had 2 children (was worried about the RAI passing through the
ovaries though supposedly it's 'safe'). My thryroid hormone
levels still fluctuate slightly (the RAI didn't kill off the
whole gland) so I have blood work done annually to check it. Good
luck. I'm glad I did it.
I had an overactive thyroid about 13 years ago. I was never
really given a choice about the iodine bacause I was so sick
from the thyroid. I did the iodine once and was super sick for
the weekend (though I dont think it was from the treatment,
just the overactive thyroid). It helped, but not enough, so I
had to go back for a second dose. Worked that time so well
that now I have an underactive thyroid (very common) and am on
medication for life. But I feel better. I will say that if
you go this route and become hypothyroid, it can take quite a
while to get your medication dosage correct, and it can change
as you age or if there are any major changes in your body (like
pregnancy). Overall, the readioactive iodine does work and is
not a big deal. Good luck!
I'm no expert, but my mom just went through this a couple years
ago. She is otherwise totally healthy, 62 yrs old. Most docs
recommended she go straight for the radioactive iodine treatment,
because the risk of trying to treat it with meds is higher for
older folks because of the potential for it to have adverse
effects on the heart. But she is so healthy and fit, with what
seemed to be a very healthy heart, so she opted to try the meds
for one year, then reevaluate. In her thinking, which seemed
very wise to us, since there was something like a 50% chance of
spontaneous remission within a year anyway, why not wait it out
for at least that long. She didn't like the idea of doing the
radioactive iodine to basically kill the thyroid, then needing to
take thyroid med for the rest of her life . Her thyroid levels
were extremely high. Within three months on the thyroid lowering
med, though, the level dropped dramatically. The docs slowly
lowered the med level over the course of a few more months, until
they decided to try her off them completely. Lo and behold, she
was totally fine, and has been ever since. It seems like she
went into remission, so to speak, very quickly. It's been about
a year and a half since, and no problems at all. Also, btw, she
did investigate some holistic approaches, and ended up altering
her diet slightly (though she was already eating very healthily)
and working hard at reducing her stress level. In retrospect,
she realized that she was actually going through a very stressful
period of her life. HTH!
I am currently on my third round of methimazole since being
diagnosed with Graves Disease (hyperthyroid/diffuse toxic goiter)
five years ago. I first took it for a year, was in remission for
18 months, then took it for 18 months, was in remission for only
a few months, and now I've been two months on this third round.
At this point I am seriously leaning toward Radioactive Iodine
(RAI) in order to get off this merry-go-round.
That said, the clinical consensus seems to be that you can in
fact stay on methimazole indefinitely. Yes, there are potential
side effects, but the risks are small, and the scariest (and
rare) side effect of agranulocytosis is most likely in the first
few months. You do need frequent blood work to monitor CBC and
liver for the side effects, for at least the first months, and
keep checking your thyroid levels frequently as well as the dose
I've been feeling better about the ''nuclear'' option since finding
out that a friend of mine had RAI several years ago and is doing
fine, and since reading some good articles in peer-reviewed
journals such as one in the Journal of Clinical Endocrinology
which found that there was NOT an increased risk of morbidity
(illness) or mortality (death) for patients who had RAI for
Graves Disease. Beware, by the way, of some of the internet
patient groups such as the graves_support Yahoo group and people
like the self-appointed thyroid expert, Mary Shomon, who have a
pretty strong bias against RAI, not much of it based on science.
You should know, though, that in Europe the anti-thyroid drugs &
surgery are first line treatments before RAI.
Here are some good sources of information for you:
And there is a yahoo support group called gravesandrai which you
might find helpful. If you want to commiserate with someone else
doing the hyperthyroid tango, feel free to contact me.
I had the procedure about eight years ago. I wasn't a parent at
the time, but I suspect that the quarantine would be very
difficult as a parent. I had little choice in whether or not to
get the procedure, as the pills stopped working for me. What I
found is that, after having the procedure done, health
maintenance has been much, much easier. You get a dose, take it
every day, and don't need to think about it other than periodic
visits to the endocrinologist. If you have Graves' disease and
are treating it medically, though, you have to put a lot more
effort into monitoring, because the thyroid hormones can
fluctuate. If you don't have thyroid hormones, there is no
In summary, it would be a short term pain for a long term gain.
Yes, I did radio active iodine, after a brief Rx of PTU (liver
got inflamed from that). This was about 15 years ago. It took
about a year for my metabolism to really stabilize (lost weight
then gained, then got down to what it should be). Since then,
I've take synthroid daily, no problems.
I was hyperthyroid for ~5 years. During that time, I saw three
different endocrinologists, all of whom mentioned at some point
the possibility of radioactive iodine treatment. I resisted
because most people I talked to said they usually kill off too
much of the thyroid gland and you wind up on thyroid supplement
for the rest of your life. Instead, I tried 2 18-month courses
of Tapazole; between the courses, I went into 'remission' for
about a year but then became hyperthyroid again after about a
year. After 5 years of this, I was about to relent and finally
do the radioactive iodine treatment...but then my thryoid
bounced back to normal, on its own. Since then, I have
generally been OK. My thyroid went a bit wacky during both
pregnancies but returned to normal after birth. I use NON-
IODIZED salt (available at most groceries) - and I think it's
best to avoid too much shellfish. Anyway: sometimes your body
can bring itself back into line, so it might be worth waiting
if you want to avoid the possible consequences of the
Any parents of children with Congenital Hypothyroidism out
there? I am the mother of a 2-year with this (very rare)
condition, and although she's very happy and healthy, I'd like
to discuss treatment and other thoughts/concerns as they arise
in follow-up to your questions about c.h., one early sign of
hypothyroidism you may see at the end of a wean of medications is
constipation, otherwise you might not notice anything.
follow your doctor's advice. and try not to worry, most kids with this
who are diagnosed an treated early turn out just fine. cat
Our daughter was diagnosed with Congenital Hypothyroidism at
birth. She's now 5 months old, and thanks to medication, she's
doing great. We have yet to cross paths with anyone who has
dealt with this condition, and we would be very comforted to
find others who have walked in our shoes -- to gain support and
Good for you for getting this discovered and treated! I have not dealt
with the congenital issues, but have with hypothyroidism in adulthood.
Make sure you've checked out the Thyroid Foundation
(www.tsh.org) for general support and new research about thyroid issues.
Also I'd recommend you periodically test her levels. I'm sure you've
been told to anyway, but personal experience is that the body's
requirements seem to change periodically and at times the dosage needs
adjustment. Also, though many times doctors will be comfortable having a
primary care doc monitor these levels, I and ALL of my other hypothyroid
pals (and you'd be surprised how many of us there are) have had much
better results staying in the care of an endocrinologist.
Best of luck
Here is a referral of a support network for you, hope that it helps.
Title: Congenital Hypothyroidism Support Network
Description: Network and exchange of information for parents of children
with congenital hypothyroidism, a thyroid deficiency.
Information and referrals, phone support, pen pals, conferences,
literature. Newsletter ($25/year). Scope: National network of MAGIC
Founded: 1989 Address: c/o MAGIC Foundation 1327 N. Harlem Oak Park,
Illinois, 60303 United States Telephone:
1-800-3-MAGIC-3 or (708)383-0808 Fax: (708)383-0899 Email:
email@example.com Web Address:
Take Care, Rebecca Elwood Assistive
Technology Specialist Center for Independent Living, Berkeley
with permission from the Bay Area Disability Network
Editor, BAD Network
I was just diagnosed with a Hyper-parathyroid tumor (not to be
confused with Thyroid problems...the parathyroid is apparently
unrelated). This isn't very common and there's nothing on the
site - anyone out there with this condition, willing to share
recommendations for endocrine surgeons, treatment options,
experiences? I've been referred to Dr. Orlo Clark at UCSF for
surgery and would love thoughts on him.
My endocrinologist (recommended on BPN) has given me very
little info about the condition so everything I know, I learned
on the web.
Thanks in advance
-- nervous patient
i saw your posting and thought i would mention a little something
to you. hyperparathyroidism is also a condition in animals. we
see it in dogs. if you want to understand the disease more, you
may be able to find some info in veterinary literature. i know
this doesn't help you find a surgeon for humans, but at least you
may get some info on the disease. the presentation of many
diseases are similar in any mammalian species. -
I recently had hyperparathyroid surgery. I have no idea if my experience was typical, but it
was not a big deal. I felt pretty much back to normal within a week, and have barely any
scar. I had absolutely no post-op pain beyond some difficulty swallowing the first day.
There are a lot of pre-op tests which can be inconvenient, and it does involve an overnight
at the hospital. But really there is nothing to be anxious about. I had mine done at John
Muir by Dr. Asbun (he's in Pleasant Hill), and would see him again if I had to do it over.
-- former patient
I have had hyperparathyroidism due to a parathyroid adenoma. I
have had the surgery twice, once unsuccessful and once successful.
Dr Orlo Clark is one the top docs on the West coast and is
supposed to be excellent. My excellent doctor was one of his
colleagues Dr Duh also at UCSF. There are a bunch of pre
surgerical tests that they will probably do and they take some
time but not tramatic. If you have any further questions please
email me, I will be happy to answer.
I didn't see the original post, but I had the surgery in March at
Kaiser San Rafael- completely smooth sailing. Only one of my
glands needed to be removed.
My calcium levels restabilized right away, no problems there. My
scar is healing very nicely (they use plastic surgery
techniques), and is already only noticeable if you look closely.
If by any chance you have Kaiser, I could not have been happier
with my surgeon, as either a doctor or as a person (Brian
Delafonte in ENT). The anaesthethiologist was great, and the
nurses were great (only the food was terrible!).
As the other poster said, feel free to contact me if I can be of
I am convinced I have a problem with my thyroid under producing. I just haven't
felt myself in my late 20's (now in my early 30's), I wasn't sure what was going on- I
am fatigued doing the same things I always have, I carry about 30 pounds more
weight that I should (I pay particular attention to diet and exercise and did cardio
3-4 times a week for 30-45 minutes without any weight loss until I got so
discouraged after a year that I quit doing cardio and just ride bikes or walk 30
minutes a day), my hair falls out, I'm constantly cold, my skin looks dull and worn
out after taking meds, getting regular peels, drinking lots of water, etc, my periods
are LONGER than before I had my son 2 years ago and much more painful- the list
goes on. Plus, I found out that a hypothyroid runs in my family- but that didn't
seem to matter to both docs.
I'm tired of people blaming my weight on me being lazy or just ''baby weight''. I
work very hard at fitness and health and nothing seems to work! The weight part is
tough, but really, I just want to feel good- not superhuman- just good. I have seen
2 doctors who both insist I'm just tired from being a mom, etc. One reluctantly gave
me a thyroid lab test, which I have been told- and I feel- was very superficial.
What can I do? I am going to start a Gaia thyroid supplement today, but I want to
get this taken care of. Is there a more detailed test I can ask for ? Has acupunture
helped anyone? Any other therapies? I'm tired of being made to feel like a
complainer or a hypochondriac when I know my body and just want to be well! has
anyone else dealt with this?
If your insurance will cover it (or even if it won't!) try seeing Dr. Rachelle Halpern
in Lafayette. She is an endocrinologist who is also a bit alternative and will help
you diagnose your problem to see if it is thyroid related and also help you find the
right solution happy former patient
There's a book you may want to read called ''The Diet Cure''. The author's last name
is Ross. I have been using it to control my insatiable craving for sweets. There's a
chapter in the book about thyroid dysfunction and the supplements you can take to help
alleviate the problem. Elephant Pharmacy has the book and the supplements. I'm sure
you've considered changing docs but maybe a homeopath or acupunturist might be an
alternative to consider. Best of luck.
I have a thyroid condition and had to change doctors when I was
16 to get the proper diagnosis and test. I lived in Pennsylvania then.
There is a web-site below that has in-depth advice about thyroid tests and symptoms --
and it sounds as if you have ALL
Mary Shomon has many ideas and much information to help you.
Don't give up -- swich doctors till you get the test.
I don't know about the thyroid part, but I think you should make an appointment w/ a
gynecologist and ask to be tested for uterine fibroids. Long, painful periods and a
tummy bulge are both symptoms of fibroid growth (which consists of muscle tissue, not
fat - so stop blaming yourself). If the gynecologist also suspects fibroids, s/he
should have you take the following tests: ultrasound, saline hysterogram, and/or MRI.
80% of women have fibroids, but most don't know they have them - not unless those
fibroids grow enough that they put pressure on adjacent organs and cause symptoms that
adversely affect your lifestyle. In most cases, it's OK to leave them where they are
as they usually shrink in menopause EXCEPT when they're detrimental to your quality of
It really does sound like hypo-thyroidism. Ask for a referral to an endocrinologist.
If your docs are reluctant, ask them - What harm would a referral do? get them to
answer you or give the referral, don't let them shrug you off. They may be overworked
and not listening or they may simply not know much about it and not know what to do
for you. take the issue out of their hands if they are unwilling or unable to deal
What do you mean when you say you were given a ''superficial''
thyroid test? Were you given a ''TSH'' test? The TSH blood test measures your
''thyroid stimulating hormone''. Folks are diagnosed with hypothyroid when their TSH
is high. This is because other hormonal bodily devices work harder to compensate for
low thyroid hormone. It is the standard diagnostic test for low thyroid conditions,
and it is the test one takes to monitor an existing condition. It is the test you must
ask for if you are concerned about your thyroid. In addition, you may want to seek out
an endocronologist if you believe that your doctor is not able to recognize any
hormonal conditions you might have.
Your doc probably tested your thyroid stimulating hormone (TSH) level which only tells
part of the story. It's secreted by the pituitary gland and high levels suggest that
your thyroid is not kicking out enough throid hormones, but it's a complex system and
any number of things could be askew thyroidwise. You should
*insist* that A) you see an endocrinologist and B) You get your
T3 and T4 levels tested. It's a more expensive test, but it is way more accurate. And
your symptoms sound very thyroid-related to me.
Keep looking for a doctor who will help you find your answers.
It IS possible to test normal and STILL be hypothyroid for your body. Make sure you're
seeing an endocrinologist and not a GP/family practice doc. The GPs just don't have
time to keep up on the subtleties of thyroid issues. I was hypo for about 4 or
5 years before finding a doc who was helpful. And it took many months after that to
become myself once again. I recommend checking out the Endocrine Metabolic Medical
Center in Redwood City. They're worth the drive.
I looked into lots of thyroid treatments that were 'nontraditional' and was surprised
to find most (ayurvedic, acupuncture, etc.) recommended turning to allopathic
(western) medicine for thyroid issues. I also learned that most medical students spend
very little time on the thyroid unless they're studying to be endocrinologists, that's
suspected to be why they don't always 'get' thyroid issues very well. The symptoms you
list certainly sound like hypothyroid symptoms. Don't give up. There are docs with
listening skills out there. Sympathetic
I saw Dr. Stephen Langer (3031 Telegraph Ave. 548-7384), an endocrinologist, for
hypothyroid testing. He's a bit of a character and he doesn't accept insurance, but
he's thorough, holistic, and is open to trying medicine for ''sub-clinical''
thyroid problems - when you're tests come back in the low end of the range but not
necessarily low enough for other doctors to prescribe.
There are a few comments about him on this website under
You have listed many symptoms of Hypothyroidism.
Others....constipation, hoarse voice, dry skin, ''enlarged tongue''...(words come out
I suggest you try a different doctor. A thyroid supplement may help but you really
need thyroid hormone. You can take Armour thyroid, a natural thyroid hormone from pig
(it's what I take very successfully) or you can take a synthetic hormone. Also fine to
take...no side effects.
The complete tests are TSH, t-3, t-4, thyroid antibody, and free t-3. You should at
least have TSH, t-3, and t-4. THe TSH alone is not always an accurate measure. THey
often come back normal when in fact the thyroid level is very low.
I went thru similar feelings when my first son was 6 mos. old.
A blood test of the above showed my thyroid was VERY low.
Good luck. Be insistant
I am hypothyroid, and I had all your symptoms and more. Go to reputable
endocrinologist immediately. A simple blood test will tell you proof positive. A
prescription for LEVOXYL or SYNTHROID daily is what you need to feel like your old
self again, in a matter of a few months. Go now. Your condition, if hypothyroidism, is
treatable, but you can die if you don't take a synthetic hormone! I see KENNETH WOEBER
at UCSF in San Francisco.
Kenneth Woeber, MD,UCSF Medical Center at Mount Zion Box 1640, UCSF, San Francisco CA
94143-1640, Phone: 415 885-7574 taking a pill every day
I had many of the same symptoms and similar problems with my previous doctor, until I
saw Dr. Nathan Becker, endocrinologist, at UCSF Medical Center. He did a complete
throid test panel and adjusted my medication, added some new medication, and within
2-3 weeks I felt like a different person. I can't recommend him enough, it really
changed my life Beth
I've been hypothyroid since my late twenties; I'm now 45. I had similar symptoms after
my first pregnancy. I was working out but gaining weight instead of losing. This
phenomena is called ''unexplained weight gain.'' It's common among those with
hypothroidism. I highly recommend the book Living Well With Hypothyroidism by Mary
Shomon. It will steer you to find the right docs. The following tests are explained
more fully in the
book: 1) TSH Test-most commonly run test to check hormone production, 2) Cholesterol
test-to help detect if hypothyroid,
2) Antithyroid Test-done to detect if patient is building up antibodies to own
thyroid, 3) TRH test-to help detect underlying cause, 4) Reverse T3 test - to see if
T4 is converting to RT3 which affects T3 uptake at cellular level.
There aren't enough endogrinologists to go around with all the autoimmune disorders
these days. Keep looking until you feel better. It's important to take the meds
consistently (same time every day) if you do end up hypothyroid. Good luck anon
On my Internet radio program, Full Power Living, (worldtalkradio), I had as guests
Drs. Richard and Karilee Shames as they presented their book entitled ''Feeling Fat,
Frazzled or Fuzzy?'' in which they discuss all manner of endocrine imbalances that
most doctors don't want to investigate completely, including thyroid. They tell you
about home tests you can obtain and what to look for. He specializes in working with
issues of the thyroid. Dr. Richard Shames is a Harvard-educated doctor with a practice
in Marin County. Dr.
Karilee Shames is a nurse. I suggest you get a copy of their book and/or call for an
appointment. Best wishes!
There is a urine test that you can take that tests fOR t3 and t4.
It is not covered by insurance but only costs about 30$.My doctor feels that this is
much more conclusive than blood tests. I had the same problem except I was losing a
lot of weight. My dr. (Dr GARy ross, San Francisco) takes a very holistic approach to
thyroidism. He explained to me that most doctors only give patients t4 medication but
a lot of times it is t3 that patients need as well. He also told me that a lot of the
medications are synthetic and that sometimes the best thyroid medication comes from
pig thyroid (which is controversial to some) Nonetheless, I reccommend that you seek
out a doctor with a more holistic approach. I found mine through an accupuncturist
referral. email me if you have more questions Tonya
Ask you doctor for a referral to an endocrynologist. The endo will do a detailed exam
of thyroid and other glands to make sure everything is firing correctly. If your
doctor refuses, then (a) get another doctor immediately, and (b) call your insurance
company and see if you can go to an endo without a GP's referral.
Just to commmiserate: I spent years complaining to my doctors about the SAME
symptoms, and I was told that it was due to hitting my mid-30s and the exhaustion of
mothering. The first doctor referred me to therapy, after I was seen for all sorts of
symptoms including shortness of breath. He said these were panic attacks. So, I went
to a new doctor. After gaining 20 pounds in three years, my new doctor told me that I
was in great shape and did I have any concerns. I said, ''I'm concerned that you're
not concerned about the fact that I've gained 20 pounds in three years!'' He also
begrudgling ran thyroid test. He even said, ''Every woman wants it to be the
thryroid, but it almost never is!'' Three days later he called in a state of alarm.
My thyroid had ground to a near-halt. (A normal TSH level is somewhere between
1 and 5, and I've read that the optimal is between 1 and 2; mine was over 20!).
Note: when I started medication, I thought the weight would just fall off. Sorry to
say, that doesn't happen. As my doctor explained, the medicine will now allow all my
efforts - such as the efforts you described - to have an effect. Keep eating right
and working out, if it's the thyroid, you will get back in shape with medicine helping
I would persist and ask for a complete thyroid panel.
You can always switch doctors or ask for a second opinion, or in this case a third
opinion. I am going through the same thing and had a superficial thyroid test given
by my ob.
Tomorrow I'll be having a thyroid panel, and this is what you should ask for too. I
found a doctor who said it sounds perfectly reasonable given my fatigue and family
history. I spoke to my La Leche League Leaders who said that they've seen mothers
looking so tired after a year and as a reality check that most mothers adjust, feel
better and sleep better by the end of the first year. People who are doing worse
generally have one of two problems either a thyroid imbalance or low iron. There are
two iron tests just like there are two thyroid tests, so get checked for both your
iron level and for your iron storage. Some people show a normal iron level but have
low stores of iron and are operating on a daily basis by using their stores.
Feel free to write again. I'm happy to let you know more about the tests and anything
else I find out.
Good luck! tabs
I would ask your doctor what the TSH result was. I have ''hashimoto's disease'' which
is the main cause of hypothyroidism. Since being diagnosed about 4 years ago, I've
learned that the optimum range for TSH is 0.2 to 2. (I don't know the units). The
traditional thought is that it's Ok for the TSH level to be up to 5. But this is
old-school and some doctors are not really up to speed with this. So if your results
were 2 to 5 you may indeed be ''hypo.'' Other tests you could request are: (1)
thyroid antibodies test - this would indicate whether you have hashimoto's or not. I
don't know what the ''acceptable'' range would be, if any. You could request T3 and
T4 levels... there are optimal ranges for these, plus I think there is an optimal
ratio. They are both important. These are the hormones that the thyroid makes. You
could also request a prolactin test. -- there is a connection between prolactin and
the T3 and T4 ratios or TSH or something but I don't know anything about it. Lastly,
you are entitled to see a specialist, aren't you? I see endocrinologist Dr. Clinton
Young on webster in SF. He is a thyroid specialist and is very smart. Good luck!
I was diagnosed with very mild Hypothyroidism a few months ago and have been
taking 30mg Armour thyroid per day for several weeks.I am going to have my TSH
retested this coming week to see where my levels are and if they've stablilized. My
question is-- how often should I get my levels checked? I'm not really sure what the
protocol is on this. I've heard that TSH can be hard to stabilize and must be checked
often and medication adjused appropriately. Anyone care to share their experience?
Curious and Hopeful
I think, to some extent, you need to go by how you feel. Last summer, I
was having an extremely high pulse rate, anxiety, insomnia, weight loss,
due to taking too much Levothyroxin, though my levels tested normal. I
was taking the same dose I had for 2 years, and then, all of a sudden,
these symptoms. We cut my dose in half, the symptoms disappeared, my
levels were still within normal range. My dr. said that it is important
to do blood tests, but that she also really pays attention to how each
patient with hypothyroid feels--energy level, weight, etc.
We have now settled on a dose that seems to work--more during the week
of my period. I do blood tests every 6 months and closely watch my
I've had hypothyroidism for over 15 years, since my oldest son was born.
The blood test they generally give tests the ''Thyroid Stimulating
Hormone''. Some Drs. feel this is the only test necessary. Others feel
it's not quite accurate.
My experience is that if you have hypothyroid symptoms and your TSH
shows normal, you shoujld have further testing.
If the blood test shows low TSH (which means you need more thyroid
hormone) then it's accurate for you.
All that said, if you are just starting to take a low dose of Armour
thyroid you shoujld probably be tested every 6-8 weeks for a few months
till your level stabelizes. After that a blood test about every 6 months
is probably adequate.
Once your thyroid level is stable it typically stays there unless you
have a drastic change in your life, ie: drastic dietary change (when I
gave up sugar and white flour I needed less hormone), pregnancy. Then
the level could change and you should be tested again.
I used to take Synthroid...a synthetic thyroid hormone. It seemed fine.
Last summer I changed to Armour, a natural form of the hormone. I don't
know that I feel any better/worse but I like knowing that I'm taking a
natural form. Good luck! hypothyroid for 15 yrs at least
I've been on Levoxyl for hypothyroidism for past 6yrs! If your doctor
adjusts a dose, then you need to re-check your TSH level within next 3
weeks. Once a right dose is set-up, you can go for a blood test every 6
Consult an endocrinologist who can pin-point your TSH levels.
Hope this helps
I was treated for Graves Disease 8 years ago and have had ups and downs
with thyroid levels ever since -- especially at first, and especially
during and after my two pregnancies.
When your thyroid medication levels are changed, you wait a few weeks to
check blood and see how the level is. I now get tested when I feel
''high'' or ''low'', and otherwise once a year.
Knowing when your level is high or low takes experience. Try getting
your resting heart rate when you know your level is right (just after a
test), then checking it periodically to see if it's, say, 7
beats-per-minute higher or lower than that baseline. If so, you might
want a blood test. When my level is high I talk fast, and friends know
to point this out to me.
I notice low levels fairly easily, because being tired and gaining
weight catch MY attention quickly! Oddly when I'm low, the first sign
is sore joints. I tend to exercise too hard because my sluggish heart
never signals me to slow down. Good luck. I feel blessed that thyroid
trouble is so treatable.
I've just recently gotten back my thyroid biopsy with abnormal
results. My doctor has already suggested surgery to remove my
entire thyroid followed by radioactive iodine. Of course, I am
very freaked out, but also want to act right away with as much
information as possible. Does anyone have any personal
experiences and/or advice that could help me navigate this
rocky road ahead?
I have read all of the positive comments here about Dr. Nathan
Becker in SF, as well as the feedback about Kaiser
endocrinologists, but few of suggestions are specifically
related to treating thyroid cancer. Right now, I am working
with Dr. Basina at Kaiser Oakland, but I want to make sure that
I find the best doctors possible, both for my endocrinologist
and for my surgeon. I am open to going outside the Kaiser
system, as well as going to other Kaiser offices in Northern
California. I would also like to know about successful
experiences with complementary medicine, like herbalists,
acupuncturists, etc, particularly practitioners with experience
in treating thyroid cancer.
Thank you for any supportive advice!
I had thyroid cancer when I was 40, am now 54, and can tell you it is
one of the easier cancers to deal with, most of the time (if there is
such a thing!) I'd be glad to speak with you about it if you like.
I had my thyroid removed completely, and other than
having to watch my calcium and bone loss, which I have to do as I age
anyway, no issues. I feel completely normal and healthy otherwise,
taking a small pill each AM. My best to you!! This is the beginning
of a new journey which if you allow it will be an awakening of you and
your relationship with your body.
I have been treated at Kaiser for thyroid cancer. Contact me by
email and I'll be happy to discuss my experience with you.
My partner was diagnosed with papillary thyroid cancer in 2004 and was referred by our primary care physician to Dr. Bernard Drury in Oakland. Dr. Drury is a fine and wonderful Ear, Nose, and Throat surgeon and would be the first person I would recommend for a child with a tonsil problem--or other less serious problems--but he was not, for us, the right dr. or surgeon for someone with thyroid cancer. Our family learned the hard way that the A+ GREAT cutting edge work on thyroid cancer (and for sure papillary thyroid cancer) in the Bay Area is taking place at UCSF. I would highly recommend skipping as many steps as possible in seeking thyroid cancer treatment after being diagnosed and heading FAST for a visit with Dr. Orlo Clark and his team at UCSF--including Dr. Kebebew and Dr. Duh. Sally
I have a condition called sub clinical hypothyroidism, which
means that my thyroid levels show in range in a standard
thyroid blood test, but I have many of the symptoms of
hypothyroidism like: weight gain, fatigue, missed periods to
name few. My doctor does not think that I should start with the
tradition treatment of synthetic hormones, and suggested seeing
a nutritionist. I'd be interested in learning about other
alternative options, like reflexology, acupuncture etc. to help
balance my thyroid levels. Thanks for any advice.
Tired...of gaining weight
Please pick up the book ''Living Well With Hypothyroidism..what
your doctor doesn't tell you that you need to know..'' by Mary J
Shomon. Its a great book about how to treat hypothyroidism with
alternative methods. You can get it on Amazon, or maybe at
Vitamin Express in Bkly.
There are definitely alternative ways to treat it.
I would also recomend contacting Nori Hudson, a nutritional
educator/consultant in Berkeley. Nori is amazingly knowledgable
about nutritional alternatives to many physical ailments. Her
number is 847-3197. Good luck.
Hi- I would first advise you to seek another opinion about
starting synthetic hormone treatment. I've been researching
this issue for almost a year (diagnosed with
Hashimoto's/hypothyroid) and while labs are a helpful tool in
evaluating the progress of your hypothyroidism, the fact that
you're having symptoms is enough usually to mean you need
treatment. My understanding is that there is no way to balance
hormone levels effectively without hormone supplements. There
are things you can do to help get in balance (not so
much ''alternative,'' but rather, ''supplemental:'' herbal,
nutritional, supplements, and other things that help). Patient
advocate Mary Shomon has put out a couple of great books with
details about ''living well'' with your hypothyroidism... she has
information online at about.com, and there you can sign up for a
helpful e-newsletter. I also visit the information ''boards'' at
i-village/health.com; posting a question there often delivers
many excellent responses from experienced people. Good luck,
I've found that this is not always a straightforward path and it
takes a lot of dedication & determination (and all you really
want to do is NAP Zzzzzzzzzz....)
I had the same problem. My doctor kept upping my synthetic
hormone repeatedly until I put my foot down and stopped taking
the pills. Of course, I suffered a withdrawal. I sought help
from an accupuncturist and after a months of treatments, I have
not had any more symptoms. I do not test as hypo anymore
either. This is the doctor in the Berkeley Hills who helped me.
I've been seeing him now for many years and he's wonderful:
Dr. Robert Dreyfus
Hope this helps.
Can anyone help with me information on Hypothyroid?
I have this disease and take Levothyoxin 1mg 1 times daily.
I feel sick all the time and have gained lots of weight,
I just answered another post to someone with hypothyroidism.
Check out the book ''Living Well With Hypothyroidism'' by Mary J.
Shomon. You may need to switch to a different thyroid hormone.
I've been on Synthroid for many yeas with no problems. I also
take a thyroid supplement given to me by my chiropractor who
does nutritional assessment and allergy testing using Applied
Kinesiology and a technique called Total Body Management. His
name is Charlie Prins and his office number is 526-6243.
Also, Nori Hudson is a nutritional consultant/educator. She
could also be very helpful in guiding you with nutritional
alternatives. Her number is 847-3197.
Good luck. Feel free to contact me if you want to talk about it
Hypothyroidism is not a disease, but a condition, and it is very easily treatable. Your
dosage of levothiroxine may be too low. You should be checking your levels every
six months, and talk to your doctor if you are still experiencing symptoms. I was
diagnosed 2 years ago, and only now I have finally settled my dose, and believe it or
not, once the dose is right the symptoms do go away. If you haven't already you
should read Living Well with Hypothyroidism by Mary Shomon. Good luck to you.
Our 3-month old daughter was born with Congenital
Hypothyroidism. Due to the rarity of this condition, we've yet
to meet any other families in our boat. Thanks to early
detection and straight forward treatment (just one Synthroid
pill a day) we are expecting that our daughter will be just
fine. However, we still have many questions and concerns. We
would love to touch base with other families who have dealt with
this condition to swap information and support.
[no replies received]
I have recently been diagnosed with hypothyroidism and given a
perscription of levoxyl. My doctor says it is harmless and it
does make me feel better, however the warnings that my
pharmacist gave me give me great concern. Do any of you have
this condition and what do you advise for treatment? I would
like to try to cure the condition with diet, or a more natural
product, if possible.
I've been on either Synthroid or Levithroid for 13 years for
Hypothyroidism. I'd be interested to know what your pharmacist
told you...I've never heard of the synthetic hormone you're
taking, but the others are just thyroid hormone replacement. No
side affects, no long term affects that I'm aware of (I read
plenty about it when I was diagnosed and keep up).
There are some dietary and supplemental things you can
There's a great book called ''Living Well With Hypothroidism''
It's by a woman who had hypothyroidism and was not getting the
help she needed from the medical people so she started doing her
own research. She developed a particular diet to boost her
thyroid and took supplements. She explains the physiology of
hypothyroidism and what the medical tests mean etc.
Although I take some extra supplements I choose to stay on my
synthetic meds because I've been on them for so long I'm not
really interested in seeing what would happen if I went off.I
felt SOOOO bad before I was diagnosed.
Good luck getting the info you need to help yourself.
Levoxyl is not exactly a drug; it's a synthetic replacement for
your missing thyroid hormone. There are ''natural'' thyroid pills
available, made from animal thyroids, but they are generally
regarded as less safe--it's much harder to regulate the dosage
and the balance of hormones. You cannot cure hypothyroidism with
diet. It can be a serious condition if it's not treated
properly, but the good news is that if you are on the appropriate
dose of levoxyl, you'll be just fine, as you've already observed.
No longer hypo
Hi - I'm not sure what warnings the pharmacist gave you, but I
can offer you my perspective. I was diagnosed with
hypothyroidism about a year and a half ago and have been taking
a generic version of synthroid (Levoxyl is a brand-name). My
understanding is that the synthroid basically just replaces the
hormone that your body is not producing. I don't think that the
drug itself has side effects, but an overdose of the drug would
have side effects P it would cause you to be hyperthyroid, but
this can easily be corrected by reducing the dosage. My
endocrinologist was really good about testing my TSH & T4
levels every 5-6 weeks until we got the dosage leveled out.
Hypothyroidism is incredibly common, so youUll probably get a
lot of responses here. Sorry to say that I donUt know much
about treating the condition with diet. Also, a quick search of
the web can give you much more info on Levoxyl, synthroid, and
hypothyroidism. Good luck, and glad to hear that youUre feeling
-hypothyroid in berkeley
I just started on synthetic thyroid a few months ago and am glad
that this is now available. I have so much more energy now. There
is no diet/herbal/exercise/lifestyle change, etc. way to treat
this condition. The best you can do in the way of ''natural''
medication is to go for the thyroid produced by pigs. This was
not very appealing to me. It's frustrating that you can't change
this condition on your own, but I realized finally that I should
just be grateful that this treatment is available. It's been in
use for many decades, so the side effects are well known, but
effect only a small minority of people.
I started taking Levoxyl seven years ago, when I was trying to
get pregnant. I have had no problems with it. My understanding
is that Levoxyl is a synthetic form of what your body should be
producing. It has served me well through two kids and numerous
life changes, and I do not believe I have had any negative side
Best of luck,
I was diagnosed with this same syndrome 12 years ago after the
birth of my first child. I have been on synthroid since. I have
tried a few alternatives: accupuncture, ''natural'' thyroid extract
with no success whatsoever. I cannot say that the therapy leaves
me symptom free, especially for the lack of energy and the loss
of hair (don't worry, I'm not bald!), but I feel that the
medication covers only some of the function of the gland. I have
unsucessfully looked for ways to restaure to communication to the
thyroid gland. I'm sure there are many other women with the same
condition in the area. May be we should create a small network
and exchange past and future therapy and experiences.
I was diagnosed with Hypothyroid after the birth of my now 6
year old son. I have been on Levothyroid since then and still am
not able to loose weight. My blood levels remain within normal
ranges according to my Dr. Does anyone know what I can do? No
matter what I do, exercise 5 days a week, watch what I eat,
nothing seems to work.
I can totally relate to your situation about being hypothyroid, the tests looks good,
but still not being able to loose weight. I struggles with this for year and years
because I was diagnosed hypothyroid at age 3 (which is VERY rare). Usually it comes
on much later in life. What I found that finally helped me loose weight was the
following: 1. demanding that my doctor prescribe Synthroid- NOT the generic
brand. Studies have shown that the generic brands are less effective. 2. Taking
Cytomel in addition to Synthroid to regulate the t4, which is just as important in
thyroid function. Even though the numbers in the blood tests might show that
everything is fine, things with you are obviously not fine since you aren't able to
loose weight so you will have to be knowledgeable and demanding with your doctor.
Sometimes it seems like the patient knows more than the internal medicine doctor
about specific issues because these doctos needs to know a little bit about A LOT
of things. 3. Find an endocrinologist. I recommend Dr. David Estrich in Oakland.
Very thorough. 4. Make sure your T3 and T4 values are in the lower end of the
normal range. This will ensure that you metabolism is working most efficiently. 5.
Try cutting out a lot of bread, pasta, chips, crackers, etc from your diet. Eat
fruits, and veggies. 6. Try adding weight training into your weekly activity, in
addition to cardio. The combination of these things made the weight drop off for
I take a thyroid supplement too, and my attention was caught
while listening to the radio the other day by a thryoid diet
specialist being interviewed on the Joanie Greggins show. Her
approach sounded sensible, and I ordered her book, ''The Thyroid
Diet: Manage Your Metabolism for Lasting Weight Loss'' by Mary
Shomon. I haven't received the book yet, so I can't make a
personal recommendation, but I thought her approach sounded
sensible and worth looking into.
Hi, I was also diagnosed with Hypothyroid after the birth of my
daughter. Indeed, losing weight has been a struggle. I talked
with my doctor and she simply said that it's going to be harder
for me to lose weight but it won't be impossible. Moreover,
strategies that worked before may not work now.
Once upon a time I could excercise (ie: go for a walk) and
watch what I ate (avoid junk). Now I need to make sure that I
excercise vigorously to ensure that my heart rate is around 75-
80% of its maximum and make sure that my calorie intake is
sufficiently low enough to lose weight. Weight Watchers is an
excellent program -- when I stick to it I drop weight. I also
bought a heart-rate monitor and quickly discovered that my
walks would barely put me at 60% of my maximum heart rate. And
so now I take excercise classes (spinning classes at the Y are
fantastic -- and they keep me at the top of my target zone).
''Watching what I eat'' no longer works around here, either
You don't mention where your results fall within the normal range. My
TSH levels were within the ''normal'' range but tending towards the high
end of the range. Given family history with Thyroid cancer and many
symptoms I was experiencing (hairloss, dizziness, always cold, weight
gain), I persisted until I saw Dr. Ammond (endocrinologist in Orinda). He
put me on synthetic thyroid (.05 Levoxyl), and I've been fine since. If
weight gain is not your only symptom, perhaps your dosage should be
I didn't see the original post, but I wanted to let you know
that the ''normal'' range for TSH, which is the basic test run to
evaluate the thyroid, was narrowed in 2003, though most labs
have not yet changed their normal values. Basically, if a TSH is
above 2.5 or 3.0 it is too high, and the thyroid isn't
functioning well. I see women every week with TSH's that are
higher than this that are not being treated as hypothyroid.
There are also certain foods that inhibit thyroid hormone
production and function, especially soy. Mary Shoman's website
at about.com is a good place for information. There are several
good endocrinologists in the area who really work well with
hypothyroidism. Natural medicines, which I work with, can also
help support the thyroid gland. Feel free to contact me if you
would like more information.
I recently was diagnosed with cancer of the tyroid and had a
thyroidectomy. I am still in the process of testing to make sure
the surgery was successful. In the meantime, I am left with an
extra 10 pounds on me and absolutely no energy. The dosage of
medication is certainly not correct and from what I hear, it
could take a YEAR to figure out the right amount!! While my
doctors are very familiar with hypothyroidism, they have no
advice on thyroid cancer (it is somewhat rare) or the effects of
NOT having a thyroid. Can anyone direct me to a book, a website,
or offer some related advice? Thanks!
I had Graves disease as a college student and ended up being
treated w/radioactive iodine. It is the ''nuclear'' equivalent of
a thyroidectomy. I have been on synthroid ever since. I went
hypothyroid after the treatment and was cold and gained weight
and felt sleepy, but these symptoms rapidly disappeared once I
was on thyroxin. YOu should let your doctor know that you are
experiencing these symptoms and she will start you on a dose and
probably test you after about 2-4 weeks to check your blood
levels. I stayed on the same dose for 15 years, until I got
pregnant, and it was increased.
Frankly, although it ''could'' take one year to find the optimal
dose for you, it is not like your thyroxin levels will be
swinging around wildly while they figure it out. Maybe you start
at 120 mcg and then if that is too low you go up by 10 mcg
increments. Frankly, I was a little on the low side for years,
and it was not physically apparent to me, but my blood levels of
TSH were on the high side of normal, meaning that my body wanted
more thyroxin than I was giving it.
I have to have it checked once a year for the rest of my life to
make sure I am stable. The biggest problem for me is that I have
to take the pill on an empty stomach, so if I forget first thing
in the morning, it is hard for me to remember to take it one
hour before lunch or dinner.
feel free to write me if you have more questions,
Hi, I had to read your message three times because I could not
believe my eyes. I am a doc, but not an endocrinologist. Part
of my training was at UC San Francisco's Endocrinology clinics
where, sorry to say, thyroid cancer is common. Perhaps the
subtype of cancer you had was an uncommon one. Anyway, you want
to go to the thyroid clinic. Dr. Greenspan is the thyroid guru
(world expert). Dr. Woeber is also excellent. You will be seen
by a resident first and there will probably be a wait but this
is where I would go. Take care and I hope your tests come back
with a good result.
I am hypothyroid since 6 years, at least that's when they
found out. I take my thyroid medication every day and go for
a blood test every 6 months. I just wonder if this is enought
? Do I need to see a thyroid specialist every ones in a while
I can't really trust my healthcare plan ( Kaiser) since they are
known for doing just the minimun in care. If I ask them they
will just say I don't need to see anybody, which could be true
but I also know that HMO's want to save money. I would like
to know from other people who have maybe a better
healthcare plan if this is really enough.
You should be taking 1200 mg of calcium every day, at least
four hours after you take your prescription medication. I'm
hypothyroid as well. Good luck.
I was just diagnosed with hypothyroid and saw an
endocrinologist. He said he'd need to see me at 6 wks, 3 mo, 6
mo., and then once a year from there on out. So, every 6 mo.
actually sounds more frequent than my specialist is telling me.
Hope that helps.
I've been hypo- for about 12 years now and have had a few
different insurance plans and some excellent primary care
physicians. For about the last 10 years, I've only had a blood
test done once a year and have not seen any specialists. My test
results have been consistent throughout and my prescription
dosage hasn't changed in all those years. I think once you are
stable you don't need to do anything else.... unless you are
pregnant and then they check you more often.
I've had hypothroidism for 12 years and have been on synthroid.
I recently found out that the TSH tests they routinely give at
Kaiser are not complete. As I understand it it only measures
part of the t-3 or t-4 hormone (I don't remember which).
I go to Richmond Kaiser and found a wonderful nurse practitioner
named Marianna Philippek. She's very wholistic minded and when I
requested a complete thyroid test including t-3 and t-4 and told
her why I wanted them, she agreed with me and ordered the
complete test for me.
It is very frustrating to have to fight wtih the Drs. over this
kind of stuff.
There is a great and very informative book called ''Living Well
With Hypothroidism''. I forget who it's by but you can get it
through Amazon, or maybe at Viatmin Express.
The woman who wrote it was diagnosed with hypothroidism but the
synthroid she was taking was not doing the trick and the Drs.
kept insisting that she didn't need anything mroe. She started
doing research to find out more and more about how to test and
treat and maintain hypothroidism. She discusses the best types
of foods for hypo. For example, Broccoli, cauliflower and
another vegie in the same family have an enzyme that counteract
the thyroid hormones, so for hypothyroid people it's best to
thoroughly cook these vegies and eat them in limited amounts.
If you can't find the book, contact me and you can borrow mine.
It is the standard of care in the U.S. to be seen by an
endocrinologist, ideally board-certified, when one has thyroid
problems. Make a stink and insist on seeing an endocrinologis
I've had hypothyroidism for about 9 years and have never seen an
endocrinologist (specialist for thyroids). At first I had
frequent blood tests to get the right dose but since then have
been tested maybe once every 2 years or so (more before, during
and after pregnancy). Kaiser actually tests me much more
frequently in comparison (I joined them in Sept.). I'm a doctor
and I'm very comfortable with that. Hypothyroidism isn't rocket
science usually once you have a diagnosis (ie Hashimoto's
thyroiditis which is usually the cause) and a set level of meds
that works for you. And by the way, I've found Kaiser is
actually much more vigilant than many health plans in doing what
is medically indicated based on research, especially for
preventive medicine (which thyroid would fall into).
My experience with hypothyroidism is that the basic tests that
Kaiser gives are just fine for monitoring your status. I will
admit however, to having checked and added a couple of other
thyroid tests to the lab slip myself a couple of times out of
suspicion! But what I found is that the additional tests only
mirrored the results of the basic tests and didn't really provide
any other important info.
The best indication of how your thyroid is doing is how you feel.
Thyroid imbalance can affect your energy level, cognition, and
can mimic many psychiatric disorders. Thyroid supplement is
actually used to treat depressive disorders whether the tests
show below normal or not. I take more thyroid supplement than
would ''officially'' be prescribed because it greatly helps my
bipolar depressive disorder. My (Kaiser) psychiatrist prescribes
it, and my primary practioner supports this (although she would
not have known enough to prescribe in this way herself). I'm not
saying that your case is the same as mine, just that thyroid
levels affect mood, and that watching your moods is important in
your own self-evaluation.
I was diagnosed w/Graves Disease in 1992, was treated w/the
radioactive iodine and have been on maintenance meds since then.
I've also given birth to one amazing little girl and am newly
pregnant. Talk about having to REALLY watch/modify your meds!
Geesh- The body is an ever changing, evolving thing and you
ought to be in touch w/your endocrinologist accordingly. I know
that Kaiser's range for a ''normal'' panel results are different
than that of my doctor's. I tend to think that what my doctor
says, is right for me- his name is Dr. Steven Lewis- he's in
Concord (a UC alum as well-) and he is AMAZING. I credit him
with finally getting me on the right track. I've seen plenty
of ''specialists'' and tried various prescriptions, and I think
that it might be worth your time to meet w/someone outside the
Kaiser group. Yes, I had Kaiser and am familiar w/their
practices, logic, etc. If you have any questions, please don't
hesitate to drop me a line- Good luck.
hi, I've been hypothyroid for about 11 years and I think an
every-six-months blood test is fine unless you feel symptoms,
are gaining or losing weight or, especially, are pregnant.
Greetings - as someone who has been dealing with thyroid
disease for a number of years, I would begin by
recommending, ''trust your instincts.'' I too am a Kaiser
patient and my diagnosis happened because my great Kaiser
internist, Dr. Cohen, trusted my sense that something was amiss
and sent me on for further testing (which revealed papillary
CA). I had great results with my surgery which was conducted
by a Kaiser surgeon in Southern California. For ongoing care,
I was seen by Dr. Bydaur, the staff endocrinologist, for some
time, but just didn't feel that I was getting the total care I
needed. He was a bit too much of a scientist for me and I
couldn't follow all the bio-chemistry he was describing. After
feeling uneasy with the whole thing for quite some time, I
ended up going outside the Kaiser system for the first time in
20 years. My endocrinologist is now Dr. Nathan Becker, whom I
trust totally, and found through Digest recommendations. So,
in a nutshell, I think Kaiser is outstanding for many things
(we had our two kids at Oakland Kaiser, including an emergency
C-section and VBAC), but again, on occaison, it is necessary to
put your health in the best possible hands and that means 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. Best of luck.
I wonder whether the problem is not so much Kaiser as
your primary care provider there, since you have the
impression of not getting what you want.
I am also with Kaiser, and I have a wonderful, very thorough,
kind, smart and funny primary care provider who has never
hesitated to request tests that he felt were necessary as
well as tests that I have requested if I had a good reason.
Last year on a hunch he had me tested and found I was
hyperthyroid before I was even symptomatic. I was soon
diagnosed with Grave's Disease and offered the RAI
(radioactive iodine) treatment which is the standard of care
in the U.S., not just at Kaiser. Nonetheless, being
asymptomatic and considering nuking my thyroid, I wanted
a second option, and Dr. Huynh, although he felt strongly
that I should eventually have RAI, was comfortable with my
researching my options and getting a second opinion. I
talked to a lot of my MD buddies at UCSF, Stanford and
Kaiser, and based on their recommendations, ended up
choosing an endocrinologist at Kaiser in Santa Rosa
(which happens to be convenient for me since I'm up there
frequently). He was great - spent lots of time answering my
questions (I had faxed ahead a page of questions) and I
have been able to talk to him by phone for followup while I'm
being treated with meds.
I personally feel that I have had superb care at Kaiser, not
just for this, but for other issues. I have a background in
medical research and am very proactive in asking
questions and getting them answered. You should know
that (a) thyroid issues should be reviewed by an
endocrinologist, even if your primary care MD says s/he can
handle it, (b) you can do that within Kaiser w/o spending
money outside, (c) you should research your options so that
you can ask informed questions, (d) thyroid replacement,
like anything else having to do with your body, is an art as
much as a science and (e) you should have a physician
who answers your questions thoroughly.
My mother is an endocrinologist so I asked her if she knew
of any websites with reputable current information that might
help you determine if you are getting the best care. She
(remember to copy and paste entire url)
http://www.thyroid.org/patients/patients.html -- this site has
two helpful pdf files.
Hope this helps
I was tested for hypothyroid since I was feeling very fatigue.
The first time the result of my blood test showed that I was hypothyroid.
My doctor said that I should be tested two months later and then discuss
the case. The second time, my blood test result came back negative. So
my doctor decided that I was all right.
I wouldn't have liked to take any medication even if my test result came
back positive the second time around. But I have a gut feeling that I am
hypothyroid. And I would like to know some alternative way to help
myself get better. Does anyone know about anything that would help
The British Medical Journal 2 years ago indicated that a TSH (thyroid
stimulating hormone) level above 2.0 is ''suspicious'' and warrants further
you can, get a copy of the blood test. Further, the ''other side'' of the
thyroid blood test includes measuring T4 and T3. Evenso, many alternative
think that blood tests do not tell the whole story. There are several fairly
recent, and well-written books out there to investigate: by Mary Shamon,
and Richard Shames. Dr.Broda Barnes developed the ''basal body temperature
test'' described in his classic, HYPOTHYROIDISM: THE UNSUSPECTED
ILLNESS, and found it more accurately predicted thyroid dysfunction. This
hard-cover may be in the library. Somehow you will find answers.
Several next steps are outlined in the aforementioned books. My own approach
with myself and clients has been increasing dietary protein and iodine
getting the necessary co-factors. Avoiding goitrogenic foods (uncooked
Brassica vegetables and soy, for example) and exercise have also helped. It
is wise you have
noticed this condition in yourself because having a low metabolic rate can
predispose one to weight gain, depression, infections, lethargy, and CVD
to the literature. Good luck!
If your second test came back showing normal thyroid levels, then
probably not hypothyroid. You didn't say whether you have a
a baby often disrupts thyroid levels, so it's possible that you were
hypothyroid for a while and then got better (as your test results
It might take a while for you to start feeling better.
If you're worried that your thyroid level is not normal, you
tested again. If you are hypothyroid, you will be prescribed
thyroid hormone pills. These are no big deal at all--you take
pill a day to restore your normal hormone balance. Again, if
function was disrupted by having a child, you might be able to go
medication at some point--your doctor will have your thyroid
a few times a year to make sure they stay normal.
Hypothyroid but under control
I believe the most common cause of hypothyroidism in women is an
autoimmune condition, Hashimoto's thyroiditis, in which the body
produces antibodies that gradually knock out thyroid function.
Autoimmune diseases, by their nature, wax and wane, so it's
possible (at first) to have normal hormone levels at times. I
have a family history of hypothyroidism and had several symptoms
(fatigue, coarse hair that falls out, etc.) but had a normal
thyroid hormone test. Subsequently, another doctor tested me for
thyroid-specific antibody, resulting in positive diagnosis.
There are a lot of potential causes for fatigue. Do you have
other thyroid symptoms? If yes, you should pursue the matter by
getting further testing, including a repeat of thyroid hormone
level testing and if possible, an antibody test. If you have a
normal thyroid, taking thyroid hormone (in theory!!) is not a
problem, because your body will reduce the amount it makes. If
you have thyroid disease, however, the body's self-regulation
can get messed up, potentially producing excess levels if you're
on thyroid pills.
I have been diagnosed with a hypothyroid condition after a blood test
requested by my regular physician. I am currently taking low-dose
Synthroid and am due to go back for blood tests to see if it is having
I would appreciate any feedback about whether I should go to an
endocrinologist and not waste time with my regular physician, who is a
GP, or if I should go along with the current treatment to see if it is
Any other advice?
I would give the synthroid time to take effect before going to a
endocrinologist. Most cases of hypothyroidism can be cured by a low
dose of synthroid. It sometimes take a few months before they will
get the right dosage though.
I was diagnosed with hypothyroidism a year ago. My then GP prescribed
a low dose synthroid as well but I insisted on seeing an
endocrinologist and am glad that I did. My GP prescribed way too low a
dose for my weight and I "wasted" several months of not feeling well
before I got the correct dosage. My endocrinologist (Dr. Ammon in
Orinda 925 254-7450) is efficient and extremely knowledgeable and I
have been very happy in his care.
My family has a history of thyroid conditions (hyper and hypo). It is
easily misdiagnosed and while I give kudos to the g.p. for ordering
the blood test, I think getting care and diagnosis from an
endrocrinologist would be a real good idea. There is a book called
The Thyroid Sourcebook by M. Sara Rosenthal you may want to get, to
get up to speed and figure out what questions you need to ask. Good
luck. It is a manageable condition.
I was diagnosed with Hashimoto's disease a year ago (causes
hypothyroidism), and I decided to go to an endocrinologist. I wanted to
know everything about my condition, and I felt going to a specialist was
the way to go.
I recommend reading "The Thyroid Solution" by Ridha Arem. It's a
comprehensive book on thyroid disorders. The section on diet and
supplements alone was worth it. Good luck.
I've had thyroid problems for approximately 20 years, and consider
myself somewhat of an expert at this point. My advice would be: if
your GP can handle it, and you feel better with the Synthoid and
following your GP's advice, stay with it. If your symptoms don't
improve, or you start feeling like your GP doesn't know enough or
isn't working on it hard enough, then going to an endocrinologist is
your best bet.
My understanding is that your run-of-the-mill hypothyroidism will
respond to Synthroid, and it's just a matter of getting tested and
adjusting the dose until you feel better. At some point, though, you
may feel lousy at the same time the blood tests say you're on the
right dose; again, that's when you need an expert. There were
recommendations within the last several weeks for endocrinologists. I
go to Nathan Becker in SF (at 350 Parnassus, (415) 681-7707), who is
rather expensive and not covered by health insurance, but I had many
years of treatment by doctors who didn't know what they were doing
first (I had something called Hashimoto's Thyroiditis until I had my
thyroid removed finally; now I'm hypothyroid, technically -- but I
didn't respond to treatment even the way many Hashimoto's sufferers
do, so it really took a specialist).
Finally, my advice is not to underestimate the power of your thyroid
to affect many aspects of your life. If you're not feeling well,
insist on getting treatment, one way or another!
Good luck! Laurel
I was diagnosed with Hypothyroidism about 9 years ago when my first
son was 6 mos. old. I had symptoms that made me feel like I was going
to have a nervous breakdown and I thought it was the stress of a first
baby. I actually had every symptom in the book for hypothyroidism. I
did extensive research (at Pacific Med. Ctr in SF medical/health
library) and found out that it's a pretty basic condition to
treat. The synthroid (or whatever your synthetic hormone is) acts as
your natural thyroid hormone so the body thinks all is well in
thyroid-ville. There are different beliefs about why the thyroid
stops functioning according to eastern medicine, but in the western MD
world there's no apparent reason (or interest to find out) and it's a
pretty straightforward condition to treat. There are usually no
complications with hypothyroidism, like Goiter or Hashimoto's disease
etc. It's a good idea to have your blood TSH (Thyroid stimulating
hormone) level checked every few months till your synthroid level
normalizes for you and then once or twice a year (I get a blood test
about once per year unless something wierd is happening in my
body...I'm 47 and am experiencing other hormonal changes). Once you
start taking the synthetic hormone supposedly the thyroid atrophys and
will never work again. Some alternative health practitioners think
this is not necessarily true and that with certain diet and
supplements it can work again. Also some people take a variety of
supplements, one being bovine thyroid extract, instead of the
synthetic hormone. I never went that route (Md's don't prescribe to
this treatment), although I usually do go for alternative treatments
rather than alopathic medicine. In this case I didn't want to be
taking 15 pills 3 times per day and the synthetic hormone seemed(s)
simple enough with no long term side effects unless you take too much
of a dose. You can find out a lot on the internet. Personally I don't
think it's necessary to see a specialist, at least not till you gather
as much info as you can for your own knowledge. Hypothyroidism is
VERY common amongst women and for some reason especially after the
birth of a child. Good luck. Please feel free to contact me if you
have any other questions or want to talk further.
I have had a hypothyroid condition for about 15 years--mild to
moderate--and it was always managed by whatever GP I saw, with no ill
effects at all. It's just a matter of calibrating the dosage of
whatever medication you're on, and most GP's are trained to deal with
that. However, when I got pregnant, my thyroid went absolutely
haywire and since I was under the care of my OB, he declared himself
stumped and sent me to an Endocrinologist, for whom it still took a
couple of months to get my dosage right (I ended up on double my
original dosage, and was switched from synthroid to levoxyl). Since I
was having heart palpitations from the crazy thyroid, I felt it was
right to go to a specialist. Now that I'm no longer pregnant I still
go to the endocrinologist, but I'm down to once a year and my dosage
is down to normal. I really don't feel like I need to see him,
necessarily, as things seem completely back to normal, I just got in
the habit. My advice is that if you have a fairly typical mild to
moderate problem, your GP should be able to handle it fine. If they
can't calibrate the dosage after numerous tries or you're still having
symptoms, then consider a specialist.
In my experience (I am hypothyroid) there is no reason not to stick
with your GP if you are comfortable with him/her, as thyroid is easy
to treat and is very common. BUT if you do not feel completely well
within a few months of starting medication and you are not getting
help from your GP, ask for the endocrinologist. Also do a lot of
research on the internet, it is easy, and you will be able to tell
which are the reputable sites.
I, too, have hypothyroidism and have found a combination of
prescription and herbs/supplements to work best for me. I take a low
dose of synthroid, which is all my blood tests indicate I need, but
have also found a glandular supplement (Thyrostim, from my
chiropractor) to be a life saver (without it, I can hardly keep my
eyes open in the afternoon, and have had some scary moments driving!).
I have also seen an herbalist, and with herbs from her, have been able
to cut my glandular supplement in half. So I feel I'm getting closer
to the right combination for me. I would be happy to talk to you more
about any of this, and happy to hear what people say about an
endocrinologist/ specialist. As I've done more and more research on
this problem, I have learned how the problems with the thyroid gland
affect SO MANY aspects of health including depression, loss of sex
drive, metabolism, memory, etc, etc., many of which I have
experienced. It really is an amazing little gland! I would also
recommend a book called Prescription for Nutritional Healing by Balch
to get you started on some useful information. It has helped me more
than a lot of sources and is available at Berkeley Natural Grocery and
El Cerrito Natural Grocery, as well as other places.
this page was last updated: Sep 21, 2015
BPN is now a 501(c)(3) non-profit and we are transitioning to a new website during
The opinions and statements expressed on this website
are those of parents who subscribe to the
Berkeley Parents Network.
Disclaimer & Usage for
information about using content on this website.
Copyright © 1996-2015 Berkeley Parents Network