It's no secret that to get properly diagnosed and treated, some thyroid patients must become educated, informed, and empowered. As a thyroid patient, have you encountered doctors who were threatened by your knowledge, or who refused to answer questions and didn't want you to be your own health advocate? Have you run into practitioners who were comfortable partnering with smart thyroid patients? Share your stories about being an empowered, knowledgeable thyroid patient and advocate. Share Your Stories
My Doctor Is Searching For Answers
- I, too, had a lot of hypothyroid symptoms and my regular physician would not prescribe thyroid medications because my TSH was under 5 (it was 4.50). I was so frustrated. I sought the care at my own expense of an integrative physician in Fresno, CA. Dr. Nezami did blood work and I started treatment of vitamin and mineral IV therapy, plus hyperbaric oxygen sessions. I found out I have an autoimmune disease. When I wasn't feeling any better, I asked for thyroid medications again. He wanted to test for heavy metals in my system first. WOW! My LEAD levels were HIGH. He said lead toxicity can prevent the thyroid and many other organs from working properly. I have had 3 IV chelation treatments and will have 3 more (can't affford any more). I will take chelation suppositories to continue to battle the lead and cadmium levels. So, I suggest to many of you: get your heavy metal levels tested by hair analysis or thru a doctor who can prescribe a 6-hour urine sampling after initial chelation. Good luck and God Bless.
- —Guest Vikitik
Beth
- I had thyroid cancer and Hashimoto's in 2008. I had a complete thyoidectomy and 131 treatments. Three months later I gained 14 pounds during the treatment. I had three Doctors: an oncologist, a radiation oncologist and a primary care doctor. None of them could agree on the dosage of Synthroid. I have now stopped seeing the oncologist and was told by an endocrinologist that I would never be the same again. I work in the ER and one of our doctors told me to take the name brand Synthroid. I have been taking it for more than 6 months now and I feel so much better! I don't get tired like I used to. I just wish I could lose the total of 35 pounds that I gained. I have cut out sugar, carbonated beverages, caffeine, pasta, bread and potatoes and salt. The most I lose is 2 to 3 pounds. There isn't much else I can give up! I am very active now. I can keep up with my four year old, but nothing seems to help.
- —Guest Elizabeth
"Normal" Range
- I had become the consummate Googler, in attempts to figure out why I was experiencing many (not several) of the symptoms of hypothyroid. Expensive tests and re-tests later, my primary care doctor sent me to an endocrinologist. Bear in mind, that I do not have health insurance. Meanwhile, I have always been on the low end of the spectrum. .7, .63 etc. What doctor's may not understand is that each individual had their on specific set-point or 'normal' range. It was when I dropped down to .52 and then .43 TSH that all the symptoms appeared. The endocrinologist tests (and I did make sure to ask for T3 and the other sometimes overlooked tests) showed (wait for it) 'normal' range. At this point, I have stopped believing so much in medicine and am trying to re-gain my body's natural balance on my own. I wholeheartedly agree with your stance on this. Thanks for the validation, Lorraine
- —Guest Lorraine
Hypothyroidism/Iodine
- I am so surprised not to see Dr. David Brownstein's information on here about iodine for the thyroid. His books are available at www.drbrownstein.com and also he writes informational newsletters about many health subjects. I was diagnosed with hypothyroidism in 2008 at the age of 59. Very shocking considering the mainstream doctor's said my thyroid was okay. Along with iodine, I take Naturethroid, B-12 shots, Vitamin D3 and a few other things. I feel amazing! I highly recommend reading his books. He's located in West Bloomfield Hills, Michigan.
- —Guest nancy
"None of my patients feel good..."
- "...with normal levels." That's what my last endo said to me. Initially, I was so excited about this doctor because she was the first one to listen and test for something other than TSH, after six years of trying. Then, she dropped the ball by prescribing T4 only. When I had a bad reaction to the Synthroid and called her office asking for a natural alternative, she prescribed another l-thyroxine product. I started taking natural thyroid on my own and was almost completely asymptomatic by my follow-up appointment. I asked my doctor for a nature-thyroid prescription, she refused. She also freaked out because my TSH was at .09 - even though I felt great and was NOT hypo. That was when she revealed that none of her thyroid patients are well and that she's a treat-by-numbers doctor. I didn't even bother trying to educate her. I just fired her and moved on. If I have to, I'll continue treating myself.
- —Guest Jill
Go to see a Naturalpath!
- From my experience Naturalpaths are open minded and not controlled by the drug companies, therefore they are open to alternate treatments that have also proven to be effective. It's worth every dime!
- —Guest Jeannie
Very Well Said Mary!!!
- One of the statements really hit home, "I think it's crazy that doctors who call the TSH test the 'gold standard' for thyroid diagnosis and treatment can't even agree on a normal range for the TSH test . . . " Undiagnosed for 30 years because of this 'gold standard' test! I wish every doctor would read this article, it is so right on! Thanks Mary!
- —Guest Rachel
Fine. I'm crazy. But I still need Rx.
- Tonight I feel like Kris Kringle in 'Miracle on 42nd Street' when he loses heart and fight. Then submits to the white coats. I may have a thyroid problem. I do have euthyroid multinodular goiter, but that's not why I'm writing. I did a search under 'doctor thinks I'm crazy' and, thankfully, found your site; I hope you do not mind my commenting here. My beef is this: when physicians think you're crazy - which you may not know unless you receive your records and you find the odd little notes in them - why don't they say something? If there is something you say during a visit that they don't understand, why are they such cowards that they cannot ask you about it, rather than sticking some psychologically-related comment in the chart, AND, blowing off your symptoms. I've had breast cancer, and had a baseball-size supraclavicular lump blown off as nothing with no attempt at investigation. Yeah... I must have just THOUGHT it there. Thank you for posting your experiences.
- —Guest J
Confused
- I was diagnosed with Hypothyroidism last year, it runs in my family apparently. It helped so much when I first started taking Levothyroxine. My hair stopped falling out, I had energy, I wasn't lethargic, I lost weight, my period wasn't insanely painful, I slept better, my whole world was better. Then my symptoms came back and it was during finals week at my University, which was 4 hours away from home/my doctor. I ended up taking 50 mcg on my own, and have stayed on that since. My symptoms are back again, my levels are still pretty high, but because they are "in range" she won't up the dosage. I KNOW my body and I'm already sick of not being listened to. I'm losing handfuls of hair, I'm exhausted and fatigued all the time again. I know what it's like to feel right . I know when something's wrong. Why won't she listen to me? I'm moving to Australia, hopefully the doctor there will actually listen instead of nodding their head and "waiting for results".
- —Guest Tiffany
Blood Tests
- My doctor here in London, Uk will only test my blood once a years. My doctor says it's a waste of resources doing it more often. I however, feel more satisfied if its twice a year. I have to pay privately for one. I'm not happy about it. The UK sucks when it comes to thyroid treatment. We are not understood and are treated like fools.
- —Guest Thank God for Others Understanding
Why I am My Own Doctor
- After 15 years of sub-par treatment by endocrinologists, I am now my own doctor . I will not subject myself to that abuse ever again. My family doctor told me that my depression was not a symptom of hypothyroidism. My endo discounted every symptom of hypothyroidism I had. She ended up telling me she could not help me because the College of Physicians (in Canada) would not allow her to prescribe natural dessicated thyroid (Thyroid). She once told me this was not available in Canada. I sent an email to the College of Physicians and found out that this was another of her lies. I am tired of being lied to. I have to be my own health advocate. I think the whole situation around treatment for hypothyroidism rarely being optimal is pathetic and needs to change. I have been treated on both sides of the border - Canada and the U.S.A. - and they were both just as bad.
- —Guest Pat
My Austin doctor did not really listen
- I have shared with my doctor for years the clear symptoms of hypothyroidism to no avail. In addition, I shared with this same doctor that this is a problem my sisters, mother, and grandmother had. Again, I was talking the talk but she did not listen. I diagnosed myself thanks to the internet. 10 years I suffered in Austin, due to this. After doing research on-line I was treated right away in Houston! My advice to others is don't wait! Get help! You may need to travel to a city where the doctors have more training with a teaching hospital. I find it amazing I had to go to a city with a medical school to get a doctor that would listen.
- —Guest Gloria
Tired of being sick and tired!
- I was diagnosed at 4 mos with hypothyroidism (congenital); that means I was lucky to just live..or not! Since Armour has become obsolete, my doctors are not willing to listen to my complaints and don't adjust my meds..I am taking 275mcg of Levothyroxine..yea, that high. I am experiencing severe depression, sleep issues, extreme sluggishness and cold in my extremities. When do you say enough is enough? I just want to feel human..why are Doctors so threatened by patients that educate themselves? Just listen to the patients concerns and symptoms and adjust treatment to optimize overall functioning instead of relying on their precious tests. I'm disgusted and distraught. And they wonder why people go postal.
- —Guest Sherry
Lecture from my endo
- I am also a "little paper" patient and have been to probably five endocrinologists. My current endo gave me a lecture about me not listening to her since I became her patient and also made a point that I had been to several endos and did not listen to them either. She was confrontational and had an almost hostile attitude. I had done my research on thyroid issues and had valid reasons to switch endos. To shorten the story: from my own research I found I had hyperparathyroidism (not a menopause issue as I was consistently told). I found a surgeon experienced with this and had my parathyroids removed, as well as a total thyroidectomy. They found cancer in both lobes. I had RAI and am recovering well. My surgeon is following my thyroid levels. The quest is on again for an endo who listens and will not treat me by numbers only.
- —sanz704
Finally Convinced Doctor To Change Meds
- My doctor couldn't believe me when I said that I was slowly dying from not having real thyroid or Thyrolar. He drew a circle and said that was my brain. He put in the T-4 and how it went down to T-3 and then to the pituatary gland at the base of the brain which then sent it to the throid gland. I looked at him and asked, "Since I do not have any thyroid gland, where is it going in me?" He looked blank and said, "I don't know." After an MRI of the pituitary gland, he agreed that I must need thyroid med. Only one drug store in town could furnish it through it's compound lab. He couldn't believe the difference in me the next time I saw him about a month and a half later...I had lost 17 pounds and he could tell by my eyes and my posture how much better I am. Now, I am taking Armour thyroid.
- —nannyhattie
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