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Readers Respond: What Not to Say to Thyroid Patients

Responses: 70

By

Updated May 20, 2011

Hypothyroid would be "Easier"

My Dr. told me I was never going to go into remission with Graves disease, and it would be so much easier for him if I was hypo instead of hyper. I am looking for another Dr. The blood work came back normal on everthing. I have been gaining weight. He still insists that I have RAI .
—4281

"Just Lose the Weight"

Wow! It never fails to amaze me how callous a doctor or nurse can be. I am 51 years old and cancer free for six years. I have steadily gained 10-12 lbs. a year since diagnosis in 2004. I fight it and I fight it. After years of complaining to my Endo about no energy, losing hair, etc. I suggested she check my iron and discovered I have low iron; from all of the non-stop bleeding I have done in the past year due to an irregular period that is blamed on my weight which is a result of my inability to lose weight. And yet every time I see my doctors: Endo, OBGYN, Primary (all women, all svelt), they tell me to lose weight. They give helpful pamphlets and exercise suggestions and tell me I have to try harder. They act unaware of what I am dealing with every day. Before I was diagnosed with thyroid cancer, I had already been diagnosed with arthritis in my back, legs and feet; making exercise difficult. I now have knee problems which slow down any progress I make at exercise.
—Guest Sharon

Never, Never Say This!

Never tell a thyroid cancer patient that they have the "Good" cancer. First, no cancer is good. Secondly, there is nothing more maddening than hearing that this disease that you were just diagnosed with and will alter your life from now on is good. It's only "good" if you like blood tests, doctors, ingesting radioactive material, scans, surgery, very restricting diets, and a regimen of pills. I really don't think anyone would like a lifetime filled with all of these. A more friendly phrase would be, "An easily treatable cancer (if it's the papillary kind)."
—Guest PAP

Lucky

My boss told me I was lucky that my only problem was that I was hypothyroid! All I had to do is take a little pill and everything was fine. okay....
—GuestD

Get on Thyroid Meds, Weight Drops Off

I hate it when the doctors and everyone else says "Get on thyroid medicine and the weight will come right off. The symptoms will be gone." I'm here to tell you that after 10 years on the meds, watching my diet and exercising that is total bull. The meds stopped me from gaining anymore but isn't helping one bit to get rid of the 100 lbs I gained while they tried to figure out what was wrong with me. It doesn't help with my exhaustion. I'm sure it probably helped someone but that someone isn't me. It doesn't sound like it was a lot of people on here either.
—Guest Jay

Hashimoto /Hypo/Hyper

Most of my life I was thin. For all I know I could have been hyperthyroid turned hypo with Hashimoto. I've been told to eat less. When I am below any calorie allowance. Then I'm told I don't eat enough. Should exercise more with weights. Conflicting advice all the time. Still not regulated because of breathing disorder, but still have to take insults. Very depressing
—Guest dn

Gaining weight/told to stop eating

I have been hypothyroid since 1994. In 2000 I started to gain weight and had not changed my eating or become less active. I saw 2 endo doc's, months apart, and was told I was eating too much/not exercising enough and I would die soon if I did not change my ways. They tested me and had to up my dose, but both of them did not wish to see me back and blamed me for the weight gain. I have always had an irregular period, but in 2008 I bled for 1 full year and my FP and an OB doc blamed my weight and scolded me about this. I had questioned if my thyroid was ever completely under control after the second endo visit. I had a D&C and they found nothing wrong. I finally did research on my own and found it could be my thyroid - I presented my research to FP and she finally sent me to a third endo doc and he listened and my weight gain stabilized and my bleeding stopped. Now I find losing weight impossible, have very little trust in doctor's, and have other health issues now. I'm angry!
—Guest Lorlyn

What the Doctor told me

I was 19 when I started getting sick and feeling horrible all the time. It took four years, four doctors and one shrink to figure out I was hypothyroid. The first three doctors thought I was a hypochondriac or just wanted attention. One of them never even looked up from his PDA. They sent me to the shrink for depression who said I just needed to do self-affirmation with a mirror. "I am beautiful. I feel great. I am worthy." As you can guess, that didn't help at all and neither did the pills they gave me. Finally the fourth doctor I saw, took one look at me and ordered a blood work-up. Thank goodness for him.
—Guest MamaBug

No, it's not age!

My mother was diagnosed with Grave's. While doing research online for her, I found the answer to my steady weight gain, hair loss, extreme fatigue, etc. My Dr insisted that it was "getting old and being menopausal" that was causing all my problems as well as overeating. I never weighed more than 130lbs in my life and had ballooned to almost 200-I ate very little and struggled to exercise for an hour every day after which I'd collapse in fatigue. She finally relented and did one basic test and told me I was fine. I persisted and demanded natural thyroid. She relented and after beginning my treatment, I improved. After giving me the name of an endocrinologist she thought I'd like since I was into "natural" things, I was given a full blood workup and found to have Hashimoto's. She never did apologize for being wrong.
—Guest AyUpPetal

" You Bake, Don't You? "

I was at my quarterly appointment. My weight is a sensitive issue with me. Lately, my doctor has been lowering my synthroid medicine and my weight has gone up slowly about 20 pounds over 18 months. It makes you feel that this is another failure about yourself. My trick is that I will bake cookies for my doctors appointment, therefore, they won't mention my weight gain. This last appointment he asked me if I had any problems, so I mentioned my weight gain. The endocrinolgist says, "You bake don't you." Hinting my baking was causing my weight gain. I thought he was a nice guy.
—Guest Mega Purplette

CoWorkers

I have Hashi's and went from hypo to hyper last week. My symptoms were extreme so didn't go to work. My coworker advised me over the phone to turn on some soothing music and relax and I'd instantly be okay!! Seriously??? I don't think so!! That comment only made my heart race even faster, especially as I've tried to explain the symptoms to him in the past. I think half of my coworkers think I'm simply making it up.
—Guest Avvocado

Fast food

I've been tired all the time and my hair was falling out . For 6 months, Doctors kept saying "you have depression". After 50 lb weight gain, endo told me "you need to quit eating fast food.....Here is 80 mg. of synthroid. just split it in half....NEW DR. TSH was 17.
—Guest sharon

Breakfast Diagnosis

The first seizure med I tried (dilantin) clearly states in the Rx info that it interacts with thyroid meds, which I had been taking for 10 years at that point. I felt it immediately - was sleeping approx 16 hours a day, zero short term memory, etc. When I mentioned these side effects, my doctor decided it was because I didn't eat breakfast.
—Guest ephy

Just to Listen

I hate that patronizing look, no one believes you ! I felt so terrible for so many years. I was so relieved to get a diagnosis. Then another argument starts, my meds went up and down for years before I put my foot down! I often wonder when will they really listen to the patient.
—Guest Pam

Don't Blame Everything on Your Thyroid

I have Hashimoto my TSH was 59. You all know the symptoms, major brain fog, no strength, memory, hair loss, frequent infection, and the list goes on. The only reaction I got from friends and family is that I am "imagining" symptoms, and trying to find easy escape by saying it is my thyroid. :( People really need to be educated about this. seems no one tends to understand this is a real condition.
—Guest Sur
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