Hashimoto's Disease
- Related Pages: Advice about Thyroid Conditions ... Endocrinologists
Parent Q&A
I also have Hashimoto’s, as well as lupus, and I also had to switch from Kaiser because Kaiser only knows how to treat thyroid disease one way – and that did not work for me.
I go to the Institute for Health and healing which part of Sutter Health, and my Blue Cross Blue Shield covers all of Sutter and Alta Bates. The thyroid specialist at Institute for Health and healing is Akil Palinasamy. He is an MD but very much into naturopathic principles. Here’s to your health!
Archived Q&A and Reviews
Hashimoto disease and quality of life
June 2015
I have a Hashimoto disease (hypothyroidism) and I am looking for a doctor/advice beyond adjusting the dose of levothyroxine. I really need some help in improving the quality of life.
Even though the thyroid level seems to be stable on a long timescale (I am taking levothyroxine 50mcg/day), I suffer from singular ''ups'' and ''downs'' which could be related to my menstrual cycle. Sometimes I am really tired and sleepy. Also, I begin having nausea and can't cope with even basic home routines. Things get better for a while, but then tiredness comes again. Has anybody suffered from similar swings? I would also appreciate any advice on the doctor, with whom I can discuss these issues. tired mom
I have Hashimoto's Disease too and I know how difficult it can be for the symptoms to be managed. I was diagnosed almost 7 years ago and it's taken this long for a doctor to manage it properly. I'm not sure what type of insurance you have, but that is the first important area to explore. See who is covered by your insurance. Explore the different endocrinologists and find out if they have experience treating this disorder. I had to go on a combination of Synthroid and Cytomel to treat my TSH levels. I used to be on Synthroid and Armour Thyroid, but my doctor recently switched me to the Cytomel. I feel much better, overall, on the new medication. Good luck to you.
hi there, you don't say how long since you've been diagnosed or whether you're being treated by an endocrinologist, however, it sounds like your dose is too low! The problem with thyroid issues is that the range of ''normal'' is really broad. To function well, I need to be on the low end of the normal range (so closer to ''hyper'' than ''hypo,'' but still in normal range). After being treated initially, even though my numbers improved, I was still feeling exhausted, etc. I found my primary care physicians very unsupportive (I was not yet diagnosed with Hashimoto's because no one bothered to look at my TPO). I switched doctors, and before even meeting me, after reviewing my charts, my new doctor told me my TPO suggested Hashimoto's and recommended I speak with an endocrinologist. He's been great, and he's also very longitudinal numbers driven, so now after a few years of seeing him, we have a better baseline for where I need to be -- NOT where ''normal'' is.
Please don't assume that 50mcg is sufficient for you, given your ongoing symptoms. It's a miserably hard way to be when your dosage is off, and it really affects EVERYTHING. Obviously I'm not a physician, and so am not giving you medical advice, but as a person who has had to tweak her medications a lot, and am now on a quite high dosage of levothyroxine, please take your symptoms as important indicators. Normal range for thyroid is so wide and doesn't really ''tell you'' how you feel -- it's an experiential condition, and therefore symptoms are really critical. The goal is to be functional, and you can be. Also, though this has not been an issue for me, make sure that the tests you're getting are complete, including free T4, T3, and TSH. Again, one set of numbers doesn't mean much if you're still feeling like crap!
My endocrinologist is based in SF (I've moved, but I don't want to change providers), if you're interested or willing to go there (Dr. Christian Tuan, but he's also not super convenient at Valencia + Cesar Chavez). I am sure you can find a great east bay endocrinologist who takes you seriously. Good luck! Don't give up! functional with very little thyroid left
I also have Hashimoto's Thyroiditis. I have 3 recommendations for you.
First is Dr. Michael Ruscio, functional medicine doctor who specializes in thyroid dysfunction and hormonal imbalances. He is also really phenomenal at doing all the in-depth labwork to get the full sense of the whole picture, in order to make a comprehensive plan to help the body rebalence through the use of targeted supplements. I saw Dr. Ruscio last year for several months and I am now a different person. I knew I had hypothyroidism but never knew I had Hashimoto's. I also had several bacterias in my gut that were affecting my health.
Through a tweek in my already great diet, and series of supplements and carefully monitored updates I gradually got better. I am still on synthroid and probably always will be but I feel great...no more depression, constipation, lethargy, stuck weight gain. AMAZING. I highly recommend...plus he's a really sweet guy and his office staff is great. He's in Walnut Creek, www.drruscio.com (he has lots of youtube videos, you can check him out).
The second is nutritional therapist Sara Russell, http://yourprobiotickitchen.com/ who works extensively with autoimmune, thyroid and hormonal problems from a functional perspective, focusing mostly on food and with the sparing use of targeted supplements and limited testing. Sara is an investigator and problem solver with a passion for helping people heal while doing something we all do every day - eating.
Lastly, but not least is Nori Hudson, Nutritional Educator and Consultant. Nori knows her stuff!! She can prescribe the right labs and will be able to help you w/ proper diet and supplements as well. Nori has helped me figure out various problems in the past, though I did not see her for the recent above mentioned issues. Nori teaches nutrition at Bowman College of Nutrition. 847-3197 nori [at] radiant-vitality.com
I highly recommend all 3 of these people. Their work is also complimentary to the other so you can see all 3 if that works for you. These people will go FAR beyond what the medical people will do. I speak from experience. Good luck and feel free to contact me. June K
I recommend the book Living Well with Hypothyroidism and the website http://www.thyroid-info.com/ as a place to start. http://www.amazon.com/Living-Well-Hypothyroidism-Revised-Edition/dp/0060740957
You are correct--Levo isn't the whole picture. Do you eat a lot of peanuts? Sweet potatoes? Do you take a multivitamin with your pill? How long do you wait to eat? There are local (i.e. in your gut) factors that impact absorption. This will make you feel better (or worse) on any given day, and recovery takes a few days so the trigger is hard to pinpoint.
Diet matters a great deal. Exercise matters more. I believe (very unscientifically) that it does also amplify hormonal issues. The more you know, the better armed you are to take care of yourself.
Ultimately, the levo will keep your system functional, but it really takes a lot of informed self-care to feel better. Here, too.
Google Carrie Vitt, at Deliciously Organic- great website, she had Hashimotos and shares her success. Good luck
I have Hashimoto's and I got relief from my Naturopathic Doctor. My regular MD only offered levothyroxine...for life! Dr. Joel Kreisberg has been successful in helping people make diet and lifestyle changes to reverse this condition and relieve the symptoms. http://www.drkreisberg.com/ Katherine
First, RUN DON'T WALK to either Dr. Nathan Becker in SF or his former protege Dr. Eric Buxon. Dr. Buxton is in Greenbrae, but so well worth the drive (I live in east Oakland). I saw Dr. Becker for many years -- he probably saved my life -- but followed Dr. Buxton to his new office because, frankly, he'll be in practice longer.
Okay -- I have Hashimoto's too (well, I did until I had my thyroid removed). I spent years literally bouncing off walls -- hyperactive, talky, irritable, speedy, angry one day, depressed, slow, sleepy the next. Totally unpredictable. Dr. Becker looked beyond the blood tests to my actual symptoms. (Remember, blood tests are about norms; we don't all fit in there.) He listened. He understood. Both doctors practice the same way -- they're very patient-focused. They both do physical testing at office visits too -- basic things like feeling around the thyroid, and also tests that let them see how your body reacts to certain things. (Absurd as it sounds, they can test your knee reflex and see how your thyroid levels are doing by whether the leg goes out faster than it comes back -- I've never understood that one.)
They know more about meds than any other endocrinologist I've been to (and I've been to A LOT) also. They don't just give you synthroid and send you on your way. (That never worked for me.) So, make the appointment!
Eric Buxton, 415-464-8677 (on Sir Francis Drake in Greenbrae)
Nathan Becker, 415-681-7707 (on Parnassus, next to UCSF, in SF)
Good luck, and if you have any other questions feel free to get in touch. Laurel
I assume you go at least once or twice a year to get your thyroid levels checked. A dose of 50 sounds low for an adult. I'm a man and I take 100. Do you know not to consume foods high in calcium at the same time you take your pill? Are you careful about avoiding foods high in iodine? These are a few of the tips I had to learn on my own that no doctor ever mentioned. Many good books on the topic. Good luck. anon
I recently met Mickey Trescott. She was severely debilitated by Hashimoto's and Celiac. She recovered through diet and has written The AutoImmune Paleo Cookbook. You can read her story at: http://autoimmune-paleo.com/about/ The recipes are delicious. You can obtain some of her ready-made food from Heirloom, on Vine Street near Shattuck in Berkeley (her book is also available there). good luck! carla
I too have Hashimoto's. It was triggered (apparently) by the birth of my second child. It is a drag getting the meds right (I'm still angry at my early doctors for being overly cautious). If you are seeing a regular doctor, rather than an endocrinologist, I would heartily recommend finding an endocrinologist. The regular docs think they know what they are doing, but they don't, and it can prolong your misery for months or even years.
But if you really feel like you are stable (and I remember for me, the meds took about 8 weeks to catch up after a change in dosage), then I think you should consider that something else is wrong with you. If you have one auto-immune disease, that increases your risk that you may have another. I was like you: I kept telling my endocrinolgist, ''I'm still really tired.'' In the end, I figured out I had Celiac Disease (probably also triggered by my second child.) Unfortunately, no doctor ever helped me with this, I just figured it out on my own, out of desperation. (My symptoms were mostly joint pain, but amazingly all the tiredness and low energy disappeared within a few days. It's great to have your immune system working for you, instead of against you!) And now I actually feel better than I have in years, perhaps decades. So you might want to look at a list of auto-immune diseases and see if there's something that fits your symptoms. Hope you can figure it out!
I have Hashimoto's too and experienced exhaustion, dizziness, and really low energy. I found it really helped to switch to Synthroid, instead of the generic. A nurse suggested it and it really made a big difference. I see Dr. Avantika Waring, she's really great and has helped me manage fluctuating levels. If she's not seeing new patients, try another Endocrinologist in her practice. Also, I noticed I get dehydrated often, which causes similar symptoms to Hashimoto, try upping your water intake too. I hope this helps! Brigid
I recommend not increasing your medication and instead cutting out wheat/gluten, at least as a trial of 4 months+. My thyroid antibodies went from 660 to 80 when I stopped eating wheat/gluten. I didn't realize how my sudden tiredness was often linked to wheat pasta, bread, etc. Check out curezone.com for other suggestions. my skin cleared up, too!
Diet and Hashimoto's disease
Nov 2014
Looking for a group to support lifestyle changes needed to assist living with Hashimoto Disease. Looking for guidance how to eat a very '' clean '' diet that supports the health of the thyroid. Katie
As a scientist who has also been living with Hashimoto's for years. There isn't any miraculous ''clean'' diet that supports the thyroid. This is an autoimmune disease where your immune system is producing thyroid antibodies. All you can do is work with your endocrinologist to ensure you are on the correct dose of your supplemental thryroid hormone like L-thyroxine. Ensuring that you you are on the correct dose will help you loose weight and feel more normal. Kate
I am sorry to hear about your struggles. It's really great that you're looking for a support group that will help you eat a clean diet and make supportive lifestyle changes. As a nutritional therapy practitioner working extensively with Hashimoto's and other autoimmune conditions, I do run groups of this sort. See http://yourprobiotickitchen.com/reset-health-six-week-wellness-group-program-women/ for the most recent version of the group. I'm currently planning the next one, so feel free to email me so I can keep your scheduling needs in mind before finalizing the dates and times. Sara R
HI, I did not see your original posting. But I was also diagnozed with Hashimoto's disease several months ago. I was told at Kaiser that there is no cure and I just have to live with it. My antibodies were over 350. I did some research on the Internet and bought a book called ''Overcoming Thyroid Disorders'' third edition by David Brownstein. I have followed his recommendations for three months and my antibodies were 205 last week, plus I switched from Synthroid to Armour. I am very excited and will continue to follow his suggestions for the next few months. There is a lot of research done on thyroid these days but most regular endocrinologists are not paying attention to it...... Alena
I had Graves Disease and had to get radiation to treat the illness and became hypo. I have been on synthroid for over 12 years. However, I had difficulty with weight. I even went to UCLA medical to try to manage the symptoms even though my T3 and T4 tests came back normal. I finally went to acupuncture and an herb specialist. She suggested to cut of wheat and to eat mostly cooked veggies (if you like veggies). it seems in eastern medicine that a defunct thyroid will not break down wheat/gluten or raw veggies. I was very strict about this practice for 6 months and saw results. I go the gym a lot-even before this change and never lost weight. But with this elimination diet, it worked. I sometimes still eat wheat bc I can't help myself but cutting that out really worked! Try acupuncture too! Good luck! jonesy
Acupuncturist for Hashimoto's Thyroiditis?
July 2013
I am seeking recommendations for east bay acupuncturists skilled in treating Hashimoto's Thyroiditis/hypothyroidism. I have heard about people who have been 'cured' of this condition through diet and acupuncture and ideally would like to see someone who is well versed in diet and nutrition, and who is open to working with Western doctors as well. Many thanks! Seeking Alternative Solution
Leslie Oldershaw in Piedmont is your woman! http://leslieoldershaw.com/ She is an acupuncturist with expertise in endocrinology and nutrition. She is caring, thorough and works well in coordination with Western medicine approaches. Marie s
I'm so sorry you're dealing with Hashimoto's! I don't have an acupuncturist to recommend, but since you also mentioned diet, I wanted to let you know about the Specific Carbohydrate Diet. We have been using it to help keep our child's Crohn's disease in remission, and it is recommended for several other autoimmune/inflammatory diseases, including Hashimoto's. In our case it has been remarkably effective, and I wish we had known about it sooner. There is a website, www.breakingtheviciouscycle.info, and there is a book also called ''Breaking the Vicious Cycle'', both of which explain the rationale behind the diet and how to follow it. There are no special products you need to buy -- it's essentially just a very strict elimination diet. I want to just mention that when I first read about this diet, I had a very common reaction: it seemed totally overwhelming and I didn't want to do it. And when we finally started, it was in fact totally overwhelming! But we eventually got the hang of it, and now it's fine -- in fact now I love cooking and eating this way, and I can't imagine going back. It was just the transition that was hard. I'm very grateful to the person who told me about the diet and I would like to pass it on. lucy
I highly recommend Jill Stevens. There are so many acupuncturists out there now, and all of them have their specialties. Jill's specialty lies in being able to see the big picture with her clients and help them to frame whatever the problem is in a way that they are empowered , that they can help in the process of their own healing in a way that supports who they are. I have been referring my clients to Jill for almost 5 years , and my family uses her as our primary doctor and pediatrician. www.yourwholefamilywellness.com 510-851-3006
Amour for Hashimoto?
June 2009
My daughter tried a low dosage of Levoxyl for 1-1/2 wks and stopped when she got nauseous, headaches,extreme fatigue, and upset stomachs for over 3wks. Dr. can't believe that a low dose of Levoxyl could have caused these symptoms and insists it must have been something else. We wonder if it just took a couple weeks for the Levoxyl to wear off before her headaches stopped or did she have ''something else'' that caused these symptoms. Other drs. could find no infection or virus that would confirm cause of symptoms. We saw an alternative dr. who is recommending Amour, which is a natural form, but our Stanford trained endocrinologist doesn't care for Amour. Would like to hear from anyone who has used Amour for Hashimoto hypothyroidism and your experience, good or bad. Hashimoto newbie
I took Armour thyroid unsuccessfully. My endocrinologist's explanation was that Armour is made from cows' thyroids, and sometimes the animals are ill. I switched to Synthroid, worked up gradually to the right dose, and finally felt wonderful. ''Natural'' definitely wasn't superior in my case. A bit of advice--even if you feel great, make sure to have at least annual blood tests to check your thyroid levels. And Randall Ammon, MD in Orinda is a knowledgeable and careful endocrinologist if you're looking for someone. Good luck. Judy
Hashimoto: Levoxyl med side effects?
May 2009
Am feeling side effects of Levoxyl med, though dr. is doubtful that the meds are the cause. After second week of a low dose (50mg) of Levoxyl, have had ongoing nausea, headache, tiredness and greater than usual hair loss(!). I reduced the dosage to 25mg. and the side effects eased a bit, but still present. Has anyone else used Levoxyl? Did you also have side effects or not? If so, did the side effects ever go away? -Feeling ''car sick'' ALL the time
For what it's worth, I have Hashimoto's and take the med, and I've never had any side effects. Linda
yes levoxyl made me terribly nauseated in the beginning maybe 1 2 or 3 weeks it was awful it seemed like forever and then one day it just stopped. your doctor should know this and should be closly monitoring you if he/she does know this then get a doctor that is knowlegeable or a phycopharmacologist e
I have had Hashimoto's for about 15 years and experienced the exact same things while on Levoxyl. Don't know if it was because of the drug or because it just wasn't working. I often felt like I had a mild hangover, or was carsick, thick foggy-headed, dizzy, etc. Really frustrating and depressing to feel that way! I finally found a doctor who was willing to prescribe Armour, a natural thyroid replacement. I've been on it for about 7 years now and feel soooo much better. I found that my endocrinologists were unwilling to prescribe it, but once I was on it, they were willing to continue the prescription, including Kaiser which I have now (it's actually on their formulary which was a surprise to my Kaiser doc). I got the original prescription from a naturopathic doctor whom I'd highly recommend, Dr. Tara Levy.
There are other thyroid meds than levoxyl, and they all seem to interact a little differently. I have been switched around a few times due to my medical insurance. I was fine on Levoxyl, and then Synthroid, but when I was switched to Unithroid, I got insomnia and it was seriously causing problems. I went back to Levoxyl (my formulary doesn't carry synthroid any more) and the problems went away. I recommend that you try a different thyroid medicine and see if there's improvement. Good luck! Missing my Thyroid
Sounds like med side affects to me. Insist your DR give you something else. I've been on Armour Thyroid for years and like it much better then the synthetics. There are other synthetics too...synthroid, levathroid...If your Dr. won't do it, get another Dr. It takes a while to figure out doses and meds. Good luck. anon
Need doctor who treats Hashimoto's
April 2009
I've recently discovered (mostly on my own) that I have hashimoto's thyroiditis. I've had symptoms of Fibromyalgia for more than 10 years. I recently went to an allergist who just happened to run lab work that tested my thyroid antibodies. The antibodies were many times higher than normal. I then called my previous doctors office and asked for the lab results. Turns out, I've been hypothyroid for many years. The previous two doctors never noticed anything abnormal in my results because the results were still within the ''normal TSH range'' so the doctors pointed my symptoms to Fibromyalgia.
I recently began doing a lot of the research on my own, went to a new PCP and showed him all of my research and I suggested that he write me a prescription for a type of hormone replacement based on what I've been reading. He went ahead and wrote me the prescription. I know this is not the optimal way to get care, but I honestly have not found a better way.
I am seeking a good physician that understands hypothyroid and is willing to do the extensive lab work to really get to the bottom of this. I have found a few good doctors online (some are even out of state) who seem to understand this, but they either do not accept insurance or they are no longer accepting patients.
I'm hoping to find a doctor who understand and has read into this, more than I have. Many thanks in advance. Looking forward to no longer needing to prove my case
Dr. Stephen Langer 3031 Telegraph in berkeley 510-548-7384 Tue-Thu. He is excellent. Doesn't take insurance, though. anon
I would highly recommend Dr. Peter Linfoot of Lafayette (925-962-1240). He's an endrocrinologist that does very thorough testing. I found him through the website www.thyroid-info.com, where there is a listing of recommendations for thyroid doctors (so you can find one closer if Lafayette is too far for you). I would also recommend the book ''Living Well with Hypothyroidism: What Your Doctor Doesn't Tell You...That You Need to Know'' by Mary J. Shomon. It has been a godsend to me. Good luck. Anon
I got good results from Dr. Randall Ammon of Orinda. The only treatment I've received is a daily prescription of thyroid replacement hormone, levothyroxine. My TSH is now 1.0, well within normal. Good luck. Anon
A dr. suspects a family member has Hashimoto's and all the symptoms point accordingly. We are awaiting testing. This is after a year of being misdiagnosed by a couple other reputable, though clueless and well-meaning doctors who never thought to check the thyroid. You need to find an endocrinologist who is familiar with Hashimoto's and auto immune disorders. On the bright side, I have heard from several people that Hashimoto's is very treatable. We feel extremely fortunate that we had one doctor who had the foresight to suggest that we see an endocrinologist, not just any endocrinologist, but urged us to seek out Elizabeth Fraze, MD, on Welch Road, Palo Alto. You may think it is too far to travel from Berkeley but Dr. Fraze is a rare and valuable gem. She sets the standards for excellence, as far as we are concerned. Signed, - Very Grateful.
Can't tolerate this yo yo existence on meds!
Dec 2007
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
Hi, I had a similar experience, where the low thyroid symptoms kept returning, and I kept having to increase my thyroid. A couple of years ago I started taking estrogen (estradiol, a sub-clinical dose recommended by an alternative practitioner, 1/10 the lowest dose normally prescribed). After a week or 2, my heart started racing, they tested my thyroid, and it was too high! I got a lower thyroid prescription, then later a lower one again.
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
I have lots of sympathy for you....I was diagnosed with Hashimoto's disease (after many months of mis-diagnosis), with levels so low they were off the charts. I also started at .25 mcg, and it took many months to get my levels right.
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.
I can't imagine that your endocrinologist would be ok with a TSH over 2.0 or 2.5 - its become very clear in all the research that 5.5 is way too high - even if its in the ''normal'' range for lab work. I highly reccomend Grace Eng - she is part of Summit - can't recall name of practice but is in the phone book. It has taken about 2 years of persistance to figure out my dosage - .175 or(twice your dosage) - blood work every 3 months or so, slowly increasing meds. But it has worked. I feel best when my TSH is under 2, and even would like to try to get it in the 1.something range. I think you need a new doc. good luck
I was diagnosed with Hashimoto's 7 years ago. I started with 25 mcg of levoxyl. It took about 2 years of gradual increases in dosage to reach my optimal dosage. During that time, I did experience the ups and downs you describe. The body adjusts very slowly to this medication. Hang in there, and you will get through this. But you need patience. Anon
I recommend you see Dr. Nathan Becker in San Francisco. I understand he has treated many ''hard to treat'' cases of hypothyroidism. I know two people whose symptoms were out of control, and thankfully found great relief thanks to him. anon
Hi there, I'm sorry you've been going through such a roller coaster ride. I know this can be frustrating. Here are some things to consider: Hashimoto's may stem from Helicobacter Pylori infection and this can be treated with the appropriate antibiotic. (After, you'll need to replenish with probiotics). You'll need to get your doctor to do a stool test for this. There are many things that you can do nutritionally to support the thyroid. Iodine and selenium are key. Zinc deficiency is something to consider. I am not suggesting that you come off your medication. However, cinical studies have demonstrated that treatment of Hypothyroidism with combination Thyroid Hormone therapy is more effective than treatment with Thryoxine (T4) alone. I believe that Synthroid is T4 alone. Also, minimize soy and raw cruciferous vegetables. A great book to read is Thyroid Power by Dr. Shames. Hope this helps... Sylvie
I also have Hashimoto's that was diagnosed about 8 years ago and can tell you that getting the amount of medication right is tricky- what you are experiencing is not unusual, and you'll just have to accept that everyone is different and it is a matter of trial and error.
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
I am so sorry...I remember going through the same thing 9 years ago when my thyroid disorder was first diagnosed. I know it's hard, but please be patient. Once your body decides what dosage is right and your TSH normalizes, the ''Yo Yo'' will stop swinging up and down. It could take several months - Mine took about 5 or 6 months and 3 dosage changes before I was there. By the way, if you switch to or from generic medication, the fillers may be different and your TSH will tweak again. anon
I am taking 150 micrograms of T4 (levoxythyrone) plus 10 micrograms of T3 (cytomel) daily. The 150 is considered a lot (for my weight) but that's what my body needs to keep my TSH at ''less than'' 2.0 (the ideal level). And, I have felt much better once I started supplementing with T3 which was about 3 years after starting the T4. The T3 offers a subtle but very noticeable benefit in me. The prescribing doctor (Dr. Clinton Young) told me at the time (about a year ago) that supplementing with T3 is a fairly new approach in treating hypothyroidism. I recommend Dr. Clinton Young in San Francisco (my old endo) or my current one in Oakland, Dr. Grace Eng. anon
Doc says I have 'underlying autoimmune thyroid disease'
May 2007
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
I've got it, don't be scared, it's not uncommon, and it's not something that develops with age! If you've got it, you've got it, but I think that they're becoming more alert in diagnosing it.
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
Apparently your doc is telling you nothing new. You have already known, as you say, that you have Hashimoto's thyroiditis, which is the most common autoimmune thyroid disease. A titer is a number that reflects the level of antibodies to something in your body (generally a pathogen - something your body identifies as a bad guy - but when things go haywire -as in autoimmune illnesses - your body is identifying a part of you (your thyroid) as a pathogen (bad guy) and is attacking it. It's a relatively common autoimmune disease and it can sometimes couple with other autoimmune things like Addison's disease or B12 deficiency related to gastritis (both very, very rare).
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
Hi. I was diagnosed with Hashimoto's hypothyroid in December, and I am surprised to hear that your doctor didn't not want to do anything for the next six months. That is great that your thyroid is functioning well; however, that means that NOW is the time to address the condition so that your thyroid does not become damaged. Autoimmune or hashimoto's means that your immune system is attacking your thyoid gland, so you want to stop the attack if possible.
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've got Hashimoto's thyroiditis. I am 40 but I was diagnosed over a dozen years ago. Age has nothing to do with it, and it's fairly common among young women. As far as I understand it, no one knows why anyone gets it.
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
I have Hasimoto's and was diagnosed in my early 30s. Even though it may grow increasingly common among older women, I have never thought of it as something that signaled my advancing age! I don't think you need to think about it that way. Liz O.
How frustrating for your doctor to leave such an unexplained message. I hope you get good answers when you hear back from him. In the mean time, I hope I can help reassure you that it's not as scary as it sounds. In fact, as far as I can tell, he's just telling you what you already know: Hashimoto's *is* an autoimmune thyroid disease. According to at least one website (http://thyroid.about.com/cs/hypothyroidism/a/hashivshypo.htm) Hashimoto's disease is also known as ''autoimmune thyroiditis''.
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
I have Hashimoto's thyroidits and have been on medication for years. Many people have thyroid problems and are just fine with medication. I would advise you to see an endocrinologist. If you have Hashimoto's and you have symptoms, you should be probably be treated. Internists and GPs can read the blood tests too narrowly; a specialist will be in a better position to help you. (The same thing happened to me - when my doctor told me to wait for 6 months I went to a specialist.) Best of luck. Leslie
I was diagnosed with Hashimotos and worked with Dr Murad at Berkeley Endocrine clinic for years and really liked him. https://www.berkeleyendocrine.com/physician
I did end up having radioactive ablation, so I'm not sure if that's the path you want to take, but he was kind, listened, and discussed options with me.
I have a complex endocrine issue and have received excellent ongoing care for over a year from Dr Grace Eng at Stanford in Emeryville. She is a good listener and has been so helpful to me.
Check out the Sutter Institute for Health and Healing in SF. I've had Hashimoto's for 20 years and I've had the best treatment there. They have a variety of clinicians on staff that cover all aspects of healthcare. FWIW I also saw a very prominent endocrinologist at USCF for Hashimoto's when I was pregnant and I had the same experience- labs and medicine only. Then he kicked me out when I wasn't pregnant anymore (he was nice about it!). I don't think most endocrinologists care that much about Hashimoto's.
Without hesitation I recommend Dr. Beth McDougall, of the CLEAR Center of Health in Marin. https://clearcenterofhealth.com/beth-mcdougall-md/
She correctly diagnosed my thyroid issues ten years ago after other doctors missed them and changed my life. She has continued to support me through the hormonal ups and downs that came with years of fertility treatments, and now she is helping me get into balance again now that I'm done having kids. No doubt she'll be helping me through menopause in the near future!
You do need to pay out of pocket to see her, however they will provide you with a superbill you can submit to your insurance for whatever reimbursement your insurance allows. Mine was great in the past, but not so much now, alas. Note that you do not need to do testing at CLEAR. They can give you a slip for LabCorp or Quest for better insurance coverage. It is just the consultation you need to pay for, and you likely won't need to see her too often. If financially okay for you, then it is 100 percent worth getting a consult with her. Her expertise, problem-solving, and bedside manner are beyond price.
I've posted before, but Dr. Christian Tuan, in SF, has been my go-to doctor for 15+ years. We have entered middle age together! He's in SF, but right by 24th St BART. He's really data driven and has always taken the fluctuations I experience in response to medication dosage really seriously. If you haven't explored adding Cytomel (liothyronine), might consider that. I love that Dr. Tuan looks at all the numbers, not just TSH, because Hashimoto's requires more nuance.
Hello, I love my endocrinologist in Berkeley: Dr Murad at the Berkeley Endocrine Clinic (https://www.berkeleyendocrine.com/)
He listens well and is very kind. Highly recommended!
YES this was a huge challenge I experience - I have Graves and was diagnosed at the start of when I started family building so had lots of management throughout 4 pregnancies and postpartum care. Unfortunately, I went through 3 doctors before finding my unicorn, Dr. Subramanian down in Mountain View. I had really terrible experiences with Dr. Omar at the Colby location, Dr. Chakravorty at the Sutter Dublin location and Dr. Mani at Stanford Emeryville.
What I love about Dr. Subramanian is she genuinely listens to my concerns and opinion on own care. She will make recommendations based on current research and evidence and has little to no ego so is not threatened by questions that may seem like a challenge to her recommendation. She is always willing to take the extra time to educate (not shame) which makes it easier to be a participant in my healthcare. The obvious downside is the distance (I will schedule appts midday so to miss the morning and afternoon traffic going there) and like all endocrinologists she can have long waitlists. I'm not having any more children but when I was seeing her during pregnancy she would often squeeze me in since visits were somewhat tied to gestation so she will go the extra mile on scheduling if its medically necessary to see her sooner. She is with Sutter and is literally the only reason I haven't switched to Kaiser even though it would be cheaper for my family. Good luck with your search and I hope you find your person even if it's not Dr. Subramanian!
I was recently diagnosed with Graves (the opposite of Hashimoto as hyperthyroidism). I was seen by Dr Ali Hamraz (with Audrey Arzamendi) in WC Bass Endocrinology. I found him to be explaining things, to be open to my questions with empathy, and to be available for a quick chat & suggest that walk ins as I was getting new results.
I have been seeing Dr. Clare Moynihan who is with Stanford but her office is in San Pablo. I had a total thyroidectomy and the dosage of medication wasn't working, so she increased the dosage twice and tested me for Celiac because she suspected that I wasn't absorbing the medication and wanted to solve the puzzle of my hypothyroidism. She also has a strong foundation in Genetics and finally increased the levothyroxine to the magic number and my lab results came back normal. She listens and takes as much time as necessary to hear your concerns and asks great questions. I highly recommend her.
I recommend trying Dr. Elizabeth McAnich at Stanford in Palo Alto to see if she meets your needs. She basically saved my mom’s life when her thyroid went haywire. Good luck! Finding good care is way harder than it should be.