What Newly Diagnosed Thyroid Patients Wish Doctors Would Say

Doctor speaking with patient who has thyroid condition
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Periodically, I pose a question to the thyroid patients who visit my online thyroid support forums and Facebook Thyroid Support groups to hear what wise and wonderful advice and ideas they have to share. Recently, readers tackled a simple but important question:

"What is the one thing you wish your doctor had told you when you were first diagnosed with a thyroid condition?

Readers stepped up with many of their own stories and experiences.

I've highlighted some of their answers.

One key starting point some patients wish is that their doctor might have said, "You're going to need a knowledgeable doctor."

Juliet said, only partly tongue-in-cheek:

The one thing I wish the doctor would have told me? 'Dump me. Find doctors who really know what they are doing!' (Ha ha) The first doctor did send me to an endocrinologist, so she was trying, and acknowledged she lacked thyroid expertise. But I didn't get much info out of the endo, other than the 'take this and you should be feeling back to your old self in two weeks' type information...I wish that endo could have /would have answered my questions and shown understanding of the emotional and mental side of what I was experiencing, as well as the physical reality of it...So, what I really wish my doctor(s) would have been able to tell me was that they understood the importance of my questions and they would help me to understand this condition or otherwise, that they would refer me quickly to other practitioners who really understood thyroid disease, who were willing and able to look at the treatment alternatives, were compassionate, and who would answer my questions with respect.

In my own case, I wish my doctor had told me that it could take time for me to feel better. I think when I was first diagnosed, I knew so little about thyroid problems that I was certain I would take my pill, and feel great within minutes -- kind of like taking an aspirin or something! Little did I know, eh?

I think that hearing that would have tamped down my expectations that my levothyroxine I started taking at first was some sort of miracle pill-- which I discovered, later, wasn't the case.

Wanda agrees. She said:

"I wish my doctor had told me more about what to expect and that my thyroid could cause so many varied and different symptoms. The doctor I saw for the first few years was an internist and he said all I needed to do was take that little pill and I would be fine. He only checked TSH, never anything else, and only checked TSH once a year. Over the years, I went to him complaining of this and that, he would medicate me for the symptoms, or dismiss them...he never, ever told me they were related to my thyroid disease. It was only after I started reading and doing my own research, and talking to other thyroid patients, that I realized that most of the symptoms I was having from time to time was related to my thyroid problems...That is the frustrating part, to be told it's all in your head, or to be placed on medications for a mental illness, when what you need is the correct thyroid medication."

Says LeslieB:

"I took my meds faithfully everyday but felt that 'something' wasn't right... so my mind went into self-blame mode... for decades... until I found your site in 1999. Self-blame is the worst aspect of this disease. It contributes to the depression and anxiety so commonly found when overmedicated or undermedicated. Since all the doctors until recently told me that my thyroid levels were 'just fine', I had to assume it was the 'all in your head' syndrome plaguing me. I can't get that period of my life back, so I trudge forward with my life finally feeling 'on track'. I'm older and wiser now because I educated myself..."

Gant was told:

"You have hypothyroidism. You will need to take a pill (Synthroid) once a day, have blood work every 4 weeks till levels are back to normal, then you will feel fine. I wish my doctor had told me the symptoms that are related to thyroid disease, and the effects thyroid disease can have on one's mind and body...That with each increase in meds you can feel worse before you feel better. That it can take a long time for your body to adjust to the change in dosage and to heal."

Some patients wish that doctors would explain that all medications are not the same. Bhoutros said:

"I wish my thyroid doctor told me when I was first diagnosed with Hashimoto's Thyroiditis that not all medications for hypothyroidism are the same and some work fine for some people and some people have problems with most medications. I had to make my way through three different doctors before I found one who would experiment with my medications and dosages and finally we settled on compounded thyroxine. I am allergic to the fillers and binders in most manufactured brands. It took 5 months for me to just START taking medications because I was having so many problems with the manufactured drugs (read Levoxyl, Synthroid, generic levothyroxine). Then I found out that you can have thyroxine made in a hypoallergenic base (compounding) and voila, I have been taking thyroid medication regularly for a month and a half.

Toni said: "I wish my doctor had told me that foods interact with Synthroid... once I changed my dosing time... approximately 4 a.m. when I wake up to use the restroom, I take my pill and voila. It's made all the difference in the world."

Some patients want doctors to be realistic. Kathe writes: 

"The biggest thing I wish the doctor told me was that I would not feel the same as I did previously. After my diagnosis in 1998, he said that by taking the pills (Synthroid) I would be "back to normal". Well, ten years later I'm still waiting! In that time I have educated myself about the disease (largely thanks to you Mary), switched medications (first to Levoxyl, then to my current med Armour), and learned to take care of myself (what works and doesn't work for my body). I feel OK but I don't have the energy that I used to (and I miss that!) I believe that if the doctor told me back in 1998 that I would not be what I considered normal again, than I could have learned to adjust my thinking and my habits much sooner."

Finally, I think Brenda summed it up perfectly when she said: "There are so many things I wish my doctor had told me, but I've thought about this for a while and here's the #1 thing I wish my doctor had said:

"While everyone is created equal, we are all individuals. A medication that works for one person may not work for another. I will work with you to find the best medication for you. I will not treat you like a dippy blonde who doesn't have two brain cells that fire simultaneously. I will take you seriously, because I want you to feel better! That is my job."

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