Connection between Fibromyalgia & Hypothyroid?

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

From hypothyroid to hyperthroid on meds!??

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

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

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

Can't tolerate this yo yo existence on meds!

I was diagnosed with Hashimoto's disease in September and placed on 25mg of generic sythyroid. I felt fantastic within 5 days,my muscles no longer ached, i wasn't irritable or moody, i wasn't exhausted and needing to sleep. I was euphoric and then three weeks later I felt all the above symptoms return with a vengeance. My ths skyrocketed to above 55 and after a series of tests to rule out other diseases, my doctor increased my dosage to 75mg. Again, I felt great and then crashed within less than three weeks. Now my ths is 5.5 and my doctor, after much pleading on my part, has agreed to increase my meds to 88mg. I respect my endocrinologist, but I feel like I cannot tolerate this yo yo existence.I know when my body and mind does not feel right and despite telling myself that my behavior and feelings are not a true reflection of my authentic self, I am beside myself and need to hear from others who have struggled with this affliction.
up and down in mood and muscle aches

I don't fully understand this, but I know that all the hormones are inter-connected, and sometimes a deficiency in one thing can masquerade as a deficiency in something else. You might consider getting some of your other hormones tested, like estrogen, progesterone, testosterone, and adrenal cortex. The saliva tests are supposed to be the most accurate; I would not even bother with a blood test. Good luck! anon

My one suggestion is to try to have patience between tests and dose changes. Whenever I have a dose change, I always feel AWFUL the third week (it is always the third week), and I am certain that my test will show that my levels are too low when I test again. More often than not, six weeks later, my levels are fine. I've learned to suffer through ''Week 3.'' It's rough, and it feels just like it felt when I wasn't treated--I think it feels worse because it reminds me of that feeling of being untreated. At least for me, though, it is part of the adjustment to the new dose and it does pass. I hope this helps. Best of Luck to you.

You should also know that the amount you need may require tweaking over time, thyroid levels do not always remain stable, and they can be affected by other things going on in your body. Now I take 100mcg, at other times I've needed 112mcg, and at one point I needed 125mcg for a few months.

The only thing that concerns me is that your doctor sounds very conservative, perhaps too much so. The range for ''normal'' TSH levels has fairly recently been revised to go down all the way to .2uIU/mL. I do best when I'm down right at the bottom of normal range, and, in fact, because my symptoms are mostly mood (I have a genetic tendency to depression), my doctor, with the advice of my psychiatrist, ran me at .2- 1 even before the normal range got revised.

I would definitely get a second opinion from someone less conservative. It might even be worth it, even if you have to pay out of pocket, to get a consultation at UCSF Medical School where you will get cutting edge evaluation and recommendations.

Don't worry- having an auto-immune disorder sounds scary, but it is controllable. anon

Radioactive iodine for Overactive Thyroid?

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 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

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

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/.

In summary, it would be a short term pain for a long term gain. pammie

Doc says I have 'underlying autoimmune thyroid disease'

Hello, So, after a blood test, my doctor has told me (via a phone message) that I probably have 'underlying autoimmune thyroid disease'.. because my anti thyroid antibody titters (?)are high but because my thyroid function is normal, I need no treatment, but he wants to see me in six months. I've left a message for him to explain exactly what that means. (Oh yea, a couple of years ago, I was told that I have Hashimotos's syndrome) However, I'm coming to the PBN community to see if anyone out there has been where I'm at.. and knows what I might expect.. or what you did to deal with this. I'm actually thinking of getting acupunture. I'm only 43.. but this is making me feel very old.. and actually scared. I've never felt like this before.. it's as if my youth is slipping away and I'm not happy about it. Am I making more of it than I should? I don't know. Thanks for your time. paola

The new standard, at least at Kaiser and they're usually conservative about such things, is that the TSH level should be lower than previously thought. It's confusing- the lower your TSH reads the more active thyroid hormone you have in your system (toward hyper, but not actually hyper).

For a good number of years now, it's also been recognized that pushing the thyroid toward the high end can be an effective treatment for depression in some people, whether that person's TSH and Free T4 tests (always get both done) read within the normal range or not, and whether or not they have a recognized thyroid disorder like Hashimoto's or Graves. The average internist may not be familiar with this, but it is recognized in the up-to-date psychiatry world.

Interestingly, they are also observing a significant concurrence of Hashimoto's in people diagnosed with one of the several varieties of Bipolar Disorder, most particularly Bipolar II (Bipolar II is a cycling, but more of a chronic depressive, disorder than is Bipolar I). They don't yet know what, if any, the relationship is between the two.

I take levothroid, and it works to normalize my energy level quite well and it helps (in combo with other meds) to treat my Bipolar II depression. We run my thyroid toward the high end (low TSH reading on labs), and are in the process now of pushing it farther that direction given the new standards.

Google Hashimoto's and read multiple sources so that you can have an intelligent and informed dialogue with your doctor. Ignore alarmist sites, they exist for any medical condition. I also keep a file of all my lab results, all, not just for thyroid, (any doctor can print them out or email them to you) so that I can follow them for myself.

And calm down- anxiety is not useful!

(I would prefer to sign this with my name, but won't because, even in this ''progressive'' part of the world, I find that there is still fear and judgment around psychiatric disorders- maybe unconscious, but it exists) anon

I'm sorry you feel your youth slipping away. If it helps, I was diagnosed w/ Hashimoto's in my early 30's. It will eventually lead, likely, to hypothyroidism (low thyroid hormone levels) and your doc is right to check you every 6 months. It would be good for you to familiarize yourself with symptoms of low thyroid (sluggishness, constipation, dry skin, hair loss, fatigue that seems to linger and linger) and report it to your doc.

I'm not going to tell you if you're making more of this than you should. It's up to you to decide how much you make of it, but it's a treatable thing. Thyroid replacement meds mean that we don't really *need* a thyroid to live a long 'n' healthy life. Molly G

I see a wonderful ND (naturopathic doctor) in San Francisco, Dr. Victoria Hamman. 415-821-3656. She has me taking a multi-vitamin with selenium, as selenium assists the immune response in appropriate functioning. My stress hormone level (cortisol) was also extremely high, and it's my understanding that excess stress- related hormone exacerbates the malfunctioning of the adrenal-thyroid relationship. So I take siberian ginseng to normalize my stress response, and I practice a short yoga series daily at home, which *greatly* relieves my physical experience of stress and improves my energy. Dr. Hamman has also prescribed a very small dose of thryoid hormone.

I also see an acupuncturist for this and related issues, and she has me taking an individualized herbal formula. Her name is Jeannie Bianchi, L.Ac. at the Schizandra Health Center in the Castro in SF. 415-553-8886.

I have to say that my quality of life has improved hugely through these treatments. I really recommend seeking out treatment now before your thyroid deteriorates. Yes, taking thyroid replacement hormone is easy if your thryoid does stop functioning, but it doesn't really alleviate all of the debilitating symptoms of hypothyroidism, so if you can prevent it, do it! secretradio

I started out sub-clinical that is my numbers were fine, but I had symptoms so I've been taking replacement thyroid ever since. My numbers have fluctuated, and then stabilized, but it's never been a big deal. It's quite minor as medical conditions go. A pill a day if your thyroid function decreases and blood tests one or two times a year to check levels.

There's been no complications with other health problems, and almost no interactions with other meds. I'd just keep an eye out for symptoms and do the recommended blood tests, and not worry about it. Hypothyroid

So, what to expect. I can tell you what's happened with me, and what I've read about the disease. First, according to the website I looked at above, many doctors decide not to treat Hashimoto's patients who show now symptoms (enlarged thyroid, elevated TSH) but that may be changing with recent research. The website also points out that as an autoimmune disease, the thyroid functioning typically continues to decline over time, but this varies with each patient. Therefore, doctors typically continue to follow patients, as your doctor has recommended.

The good news is that even if your thyroid function declines, hypothyroidism is a very common and easily treated condition (there have been a couple recent discussions about this on these Advice newsletters, including discussions about the safety of the medication - it's safe).

I was diagnosed with Hashimoto's when I was ''only'' 26. I connected with a endocrinologist who looked at my ''borderline'' TSH levels, and initially recommended no treatment (just monitoring) because I had no symptoms. However, when she found out I was considering having kids, she treated me - for the health of the child(ren). Years later, my endocrinologist continues to monitor my TSH levels occasionally & adjust my medication accordingly.

So, yes, it's scary to get a vague diagnosis like the one you got, but for me the key has been to connect with a good endocrinologist. I think it's important that you work with an endocrinologist who will follow you over time. For me, the ''following'' has mostly been done over the phone (& via blood tests), with occasional office visits to check for nodules & enlargement.

Good luck! & remember, you're in good company. As far as I can tell this is a pretty common situation we're in. fellow Hashimoto's person

Two-year-old has Congenital Hypothyroidism

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

5-month-old diagnosed with Congenital Hypothyroidism

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

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

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@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

Diagnosed with a Hyper-parathyroid tumor

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

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

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'm convinced of thyroid problem; docs disagree

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

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

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

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

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

Hypothyroidism and blood tests

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

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

Consult an endocrinologist who can pin-point your TSH levels. Hope this helps goodcitizen

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

Experience with thyroid cancer?

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

Alternative treatment for hypothyroidism

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

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

Dr. Robert Dreyfus
Kensington, CA
510-528-0132

Weight gain & sickness with hypothyroidism

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

Congenital Hypothyroidism in 3-month-old

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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Worried about taking thyroid meds

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

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

Unable to lose weight with Hypothyroid

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

Throidectomy/Hypothyroidism

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

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

Do I need more from Kaiser than a blood test every 6 mos?

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

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

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 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

First positive then negative for hypothyroidism

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

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 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

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

GP or Specialist for Thyroid Problem?

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

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