Readers Respond: Supporting Thyroid Patients: Good Ideas and Horror Stories

If you're a thyroid patient, share your good ideas, personal experiences, and horror stories about how family and friends have reacted to you, supported you, or been less than a help.

And if you're a family member or friend of someone with thyroid disease, what have you been through? Do you have ideas on how to best be supportive? Share your thoughts now! Share Your Experiences

Thank you

It's amazing, what aren't there more celebrities coming out with thyroid disorders? Shame on Oprah! It's okay to have bipolar disorder like Catherine Zeta-Jones, Jane Pauley and Patty Duke. But it's not okay to talk about the thyroid gland being the metabolic system or manufacturer of temperature, fuel production, essential nutrients, other serious bodily functions? Only second to the pituitary in location, but not in importance. Why is the medical community so ignorant/foolish with the chemicals in our body?! Thanks for all the heartfelt letters which I can't stop reading at 3 in the morning. We are not alone and we're heroes too just like Mary by speaking out.

—Guest Lucy

Living Without A Thyroid and Parathyroid

I had a goiter in the summer of 1968 and was operated on in the fall of 1968. They removed the goiter, the thyroid gland and the parathyroid gland. Initially, I was treated with thyroid medication and D-vitamins. Later, my doctors also added calcium supplements. I was pretty stable with taking 137 mg Eltroxin for many years, but since menopause, 4-5 years ago, it seems harder to adjust.

—Guest karit52

Hypothyroid

I have been diagnosed since I 33 years old with an underactive thyroid. I still feel like crap. I am tired all the time and I have no energy at all. My husband thinks I am nuts. They have not changed my thyroid medicine since I was 33. I am now forty years old.

—Guest Janet

So Frustrating

In my teens, I was diagnosed with Polycystic Ovarian Syndrome (PCOS). Ten years ago, during postpartum, I experienced weight gain, brain fog, b-12 deficiency and carpel tunnel. I was constantly pushing myself to accomplish any minimal task. I am frustrated by my weight gain. I have been on .125 of Synthroid and monthly B-12 injections. My primary feels he has treated to his best ability and finally referred me to specialist, whom which I have an appointment with on January 11th (days before I start my very hectic, very little sleeping tax season). I pray for a positive experience with this appointment as I am beyond frustrated with my hypothyroid disorder.

—denisealmanza

Difficult to Find Good Treatment

I've had hypothyroidism for 26 years now. Unfortunately, its been my experience that most doctors are not well informed regarding hyper and hypothyroid symptoms and simply rely on TSH. My hypo is severe enough that I die without medication and it is still a struggle finding a doctor who will actually listen and treat me like a person -- not a TSH number. Rare! It definitely takes effort. Thanks, Mary Shomon, for all the info you provide on your website. I finally am getting my LIFE back to where I can function during the day without falling asleep, move in retarded slow motion, or having to pry my eyes open!

—Guest Lindy

Well DUH!!!

I have had undiagnosed Hashi's for decades. The doctor who finally discovered I had it has traced the origins back to my toddler days. I was 48 when he caught it, which was almost 1 year ago. In the past, I was able keep my weight sort of under control through very strict diet and exercise until I started having my children. I would hold my weight or loose weight while pregnant (classic Hashi's symptoms) and gain as soon as I stopped nursing. My husband always knew it wasn't my fault and though he would ask what I needed from him, didn't know what else to do. The lack of understanding from everyone else has been profound. I hear from everyone I need to lose weight. Well DUH!!!! My old doctor just told my mom I needed to lose weight even if it was hard. Well, DUH!! Mom just started talking to me about weight again tonight. She knows what I am going through, but keeps thinking tips will help. Nope. Need to give the recent control of the Hashi's time to finish working. It has only been 2 months and 40lbs!

—AnitaDenise

Thyroid Diet

I am 46 years old and have been diagnosed with hypothyroidism about 10 years ago. It has been years of struggle and weight gain. No doctor has been able to come up with an answer as to why I have all this weight gain. I went from a size 4-6 to 12-14 in the past few years. I think my doctor did not believe that I ate healthy, all natural/organic foods and right portion sizes because she had me write a food diary for a month. When I completed my food journal she was totally shocked because it was all healthy eating. Still I am unable to lose the weight. My medication has shifted from different medications and nothing works. I am also on over 4,000 IU of Vitamin D. With so many of us out there with this problem, you would think they would come up with a proper diet or program that can help us deal with this issue. I am tired a lot, have problems sleeping, my heart palpitations are high not to mention all my other symptoms - just so much more. I do not want to be a skinny model. I just want a normal weight, to be healthy and happy.

—Guest zori

At Last!

I was diagnosed with hypothyroidism two years ago and then Hashimoto's about 6 months ago. Although, I've been struggling with the symptoms for 8+ years. In the last year and a half I've seen 3 doctors and 2 endocrinologists. Even on Synthroid I was sleeping all the time and missing class and work. I barely made it through my last semester of college. Thankfully, my professors were very understanding. My mom has been very helpful too. Last month I took her with me to my endocrinologist. After an hour talking to us, which included me practically begging him to give me Armour which he refused, he told me it wasn't my thyroid and referred me to a psychologist. Fed up I went to my pharmacy and asked for a list of doctors what would prescribe Armour. I went to see a Nurse Practitioner on the list and after 10 minutes in her office she prescribed me Armour. She takes it herself and truly understands what I'm going through so I finally have hope again! If you live near SE Iowa I would highly recommend her. Just keep searching!

—Guest JaimieJo

Another Hypo

It wasn't until I slept from 5pm until 7am that they took my complaints seriously. I was given Synthroid and the doctor acted like that was the fix-all pill. When I approached him about T3 his statement was I only get into that if someone brings it up. So if I had not done the research you would of let me suffer forever?! I felt betrayed by him since he was the ONE person in this world that should of understood all of the symptoms. I, like so many others, suffer so many symptoms. I have had so many of these issues for years, even before the diagnosis. The aches and pains, the surgeries I have had for knees, carpel tunnel and tennis elbow. The exhaustion. The way friends and family view the symptoms. Yes, I lost 45 pounds at one point but I exercised 2 to 2 1/2 hrs a day and then blew my knee out. The isolation, the disgust when I look in the mirror. The worst is that my daughter is now showing early symptoms so now I have to fight both battles.

—turner0106

Hypo 22 years!

I have been suffering with hypothyroid for over 20 years. Every time I saw a doctor I told them I was tired and cold. I'm so sick of it. They always told me it was because I was thin and had low blood pressure. I finally found a doctor that would listen to me and put me on Armour! I'm a bit warmer but I'm still extremely tired! I can't take a higher doses because my heart rate becomes too fast. My family is used to it. They don't know me any other way.

—Guest Tired Tired Tired

Suffering

I have been sick since late 1999. Went from one doctor to another, all of them saying I don't have a problem. Most of them said I have depression. I have been to psychiatrists and they prescribed medicine but they did not make me better. Even if doctors said I was okayI knew there was something wrong with me even if I did not know what it was. Since most of the time I am reading and searching the internet, I found that the information about thyroid disease. When I checked the symptoms of hypothyroid, I found that they matched mine. I started consulting and endocrinologist two months back. He took tests and when the results came he told me that my T3 & T4 are normal. He told me that I have only thyroid antibodies and there is no treatment for this. He prescribed me Vitamin D5000iu, DHEA, adrenal burnout, Homocysteine and Thyroid Support Formula for three months and he said I must come back after three months. This is the second month I have been drinking his prescription but I am still not okay.

—Guest Misery

Families Don't Understand

After 7 years of hypothyroidism post my first pregnancy, I was struggling to manage stress and anger after my second child. Nobody seems to understand as this disease does not have any visible sickness symptoms. My worst fear is that my kids will perceive me as CRAZY MOM, it's really sad!! Instead of supporting family members, they give triggers on trivial reasons for us to SNAP!

—Guest SAD MOTHER

Alone with a Part of My Life Missing

I was diagnosed in 2001 with Hashimoto's and I never got told much about the condition, though I have always been medicated with Oroxine. Last year a doctor decided to reduce my medication from 100 to 75. About a month after, I had a bad asthma attack. After predisone and antibiotics, I ended up with thrush in my throat so bad that I couldn't eat, sleep and would constantly cough up mucous. I eventually did a search on the net and found that it was thrush. I finally found a doctor who would LISTEN to me. I have, after a year of being sick, found that my TSH is 18. I'm sooo depressed since everyone around me has thought that I was just a mental case. I cried when I read these stories on here. I now know I'm not the only one suffering. My faith in Jesus is what keeps me going everyday. I have a 3yr old whom I adore but I'm so tired at times I'm just too tired to play.

—spiritbroken

Struggling to Maintain Weight

Reading the posts makes me think like at least I'm finding ways to maintain my weight.One friend suggested to eat some fruits before every meal and that helped me shed some 9 lbs in 15 days.Also I do sun salutation and other yoga postures for 1 hour. I feel like I have no time for anything else. I made my family understand I need help to do the work at home. Now because I get their help and support I don't get depressed or feel alone anymore. As said by everyone Dr's advice reduce your intake. I hardly eat 800 calories.For me eating orange gives some relief and helps me lose weight. Also do some meditation and pranayama which helps to increase your body heat.

—Guest ram

Drs. Don"t Know and Don't Care

I was diagnosed hypothyroid 37 yrs. ago after 2 yrs. of health hell. I was prescribed Synthroid and sent on my way. Speed forward to 2001. I was in constant menopause upheaval being misdiagnosed & prescribed meds that not only did not work, when they didn't..the doctor was baffled & ultimately sent me on my way to figure out what psychological baggage I needed to deal with. In 2008, I had enough & had my uterus removed to alleviate the bleeding keeping me from enjoying life. Last year, your website turned me on to Armour, I shared the information with my P.A. - she prescribed it through a compounding pharmacy. I was diagnosed with prediabetes. I continue to have palpitations, thinning hair/eyebrows, weight gain, BRAIN FOG, lethargic. Dianosis is: I was referred to an endocronologist who prescribed Synthroid?!!.SHE PRESCRIBES ONLY SYNTHROID AS THAT IS THE ONLY DRUG SHE WAS INSTRUCTED TO PRESCRIBE BY HER PROFESSOR-I told her she was very wrong and was a ripoff as far as being a specialist.

—Guest Belinda Gibbs