Archived Q&A and Reviews
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. Many thanks. Anon
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 to start.
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! Going hyper/hypo
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! Cathy
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. Good luck. 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 meds.
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. Cece
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 helpful! 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. Good luck. roxannea
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. tjoe
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! anon
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! anon
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 gets titrated.
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:
http://patients.uptodate.com/topic.asp?file=endocrin/5036 http://www.thyroidmanager.org/Chapter11/11-frame.htm http://www.hormone.org/.
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. meerkatmom
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 fluctuation.
In summary, it would be a short term pain for a long term gain. pammie
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. anon
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 radioactive iodine. --previously hyperthyroid
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 Rachael
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 share information. Rachael
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 Thyroid veteran
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: mary [at] magicfoundation.org Web Address: http://www.magicfoundation.org
Take Care, Rebecca Elwood Assistive Technology Specialist Center for Independent Living, Berkeley
Reprinted with permission from the Bay Area Disability Network (http://badnetwork.org) 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. - anon
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. vs
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 any help. C
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? Frustrated Mama
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. -anon
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 the symptoms. Mary Shomon has many ideas and much information to help you. http://www.ithyroid.com/mary_shomon_info.htm Don't give up -- swich doctors till you get the test. Cornelia
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 life. Marinela
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 with it. good luck
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. Meg
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. Molly G
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 Berkeley: www.thyroid-info.com/topdrs/california.htm Good luck! Shefa
You have listed many symptoms of Hypothyroidism. Others....constipation, hoarse voice, dry skin, ''enlarged tongue''...(words come out wierd). 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 anon
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! ilene d.
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 HypoT
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! anon
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? Thank you! 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 energy levels. h
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
Hi 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 months.
Consult an endocrinologist who can pin-point your TSH levels. Hope this helps goodcitizen
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. Anon
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! Michelle
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. Julie
To Michelle, I have been treated at Kaiser for thyroid cancer. Contact me by email and I'll be happy to discuss my experience with you. Julia
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. June
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....) Hashi Mama
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 Kensington, CA 510-528-0132
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, please help Barbara
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 more. June
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. Anon
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. Rachael
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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. myrtle
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 investigate.
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. Great book.
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. June
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 better! -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. Dianna
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 effects. Best of luck, happily medicated
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. sl
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. Barbara
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 protein, 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 me.GOod luck!!!!!
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. Claire
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). Good luck! ''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 increased. laurel
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. Tara
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! christine
Hi, 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, denise
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. Lori
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. anon
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. also hypo
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. anonymous
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. anon
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. Good luck. June
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 Kaiser Adversary
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). MamaMD
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. anon
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. marian
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. happy hypo
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. Fellow patient
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. Best wishes, -Kaiser patient
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 recommended: http://www.allthyroid.org/disorders
http://patients.uptodate.com/frames.asp?page=topic.asp=endo_hor/7775=Hyperthyroidism (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 hypothyrodism? Thanks. anonymous
The British Medical Journal 2 years ago indicated that a TSH (thyroid stimulating hormone) level above 2.0 is ''suspicious'' and warrants further investigation. If 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 care professionals 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, Stephen Langer, 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 sources, and 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 issues, according to the literature. Good luck! Nori Hudson
If your second test came back showing normal thyroid levels, then you're probably not hypothyroid. You didn't say whether you have a child. Having 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 suggest). It might take a while for you to start feeling better.
If you're worried that your thyroid level is not normal, you could get tested again. If you are hypothyroid, you will be prescribed synthetic thyroid hormone pills. These are no big deal at all--you take one small pill a day to restore your normal hormone balance. Again, if your thyroid function was disrupted by having a child, you might be able to go off the medication at some point--your doctor will have your thyroid levels tested 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. Kate
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 any effect. 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 effective. Any other advice? Anonymous
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. Lissa
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. June
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. Good luck! Kris