Dear Thyroid Doctors: A Letter From Your Former Patient

Thyroid patient Cindi S. wrote this letter to help resolve the frustration she had after years of misdiagnosis by numerous doctors. Now, looking back after finally getting the diagnosis she needed, she shares her thoughts from the patient perspective. -- Mary Shomon

Dear Doctors,

Once upon a time I was in your office. For some of you, it was during my childhood. And although I understand the clues were too subtle then (pudgy and pale and non-athletic, anemia, strange lymph node swellings, attacks of dizziness), I just wanted to remind you that I was there.

Some of you saw me for just a single visit as many as three decades ago. And others saw me multiple times over the years. You are family general practitioners and internal medicine specialists and highly regarded specialists in your field. Each one of you failed to correctly diagnosis me. You need to hear my story so that you do not negatively impact another individual's life the way you did mine.

There were, as is common, some indicators of my disease/condition after childbirth at age 23. Hormonal changes, like pregnancy, puberty and menopause, are known to be triggers. I did have a prolonged recovery from childbirth and experienced severe fatigue and some depression. Losing the pregnancy weight was difficult for me. I even had a case of impetigo, which in retrospect was an additional sign that my immune system wasn't working properly. I really should have mentioned the later temporary galactorrhea -- my breasts were producing milk but I wasn't breastfeeding anymore.

Maybe one of you would have known it was a symptom? Youth, however, covers for a multiple of ailments and I was soon busy relocating and starting a career and raising my daughter.

Now, more than a quarter of a century later, it is difficult to remember that within two years after childbirth, I had my disease's classic "pain in the throat" symptom, along with hoarseness.

It interfered with the presentations I had to give at work, so I consulted two of you. One of you, an ENT, diagnosed voice nodules and recommended surgery. When I got a second opinion from an ENT, you gave me pills you said you gave to "all your singers." I wasn't a singer, but the pain and hoarseness did eventually pass, as did a perfect opportunity to recognize the disease process that had started a debilitating condition in my body. But I was still young and as the next few years brought severe allergies (an allergist recommended allergy shots but I had no time for that) and frequent urinary tract infections (a urologist recommended urethra stretching but I politely declined that) and frequent sinus/respiratory infections (the beginning of multiple rounds of antibiotics over the years) appeared, they did not interfere substantially with my life. Life was still good. Raising my daughter was delightful. I worked during the day and went to school at night and graduated. True, I was often tired as a single working mom.

That was normal, I thought. The future was still full of promise.

Moving forward in the 10 years after childbirth, I wondered if the fast food lunches caused the 10 to 15 pound weight gain. And I thought the hair was showing signs of gray because my mom had prematurely gray hair. I thought all mothers were stressed and constipated and using laxatives. And yes, I was sometimes depressed and anxious, but being a single mother wasn't easy. Friends and family kept telling me I was pale and asking, "Are you sick?" But when I was in your offices, you didn't seem concerned. I wonder why I never mentioned to any of you that I could not smell. Would you have realized that my nasal passages were already swelling with fluid? Could you know that I would have to wait another 15 years, after proper treatment, to once again notice the smell of apples and popcorn?

When I came to one of you because I really just didn't feel well overall, and testing showed my white blood count was high, you didn't recognize that I had a disease causing inflammation in one of my body parts. You, like so many of the others, had yet another antibiotic prescription for me. "Medicate the symptoms, never discover the origin" -- and never ask any other questions -- seems to have been a common theme with all of you. Is that what they taught you in medical school?

I wonder if any of you knew the percentages. One-third of all women with the condition I had after childbirth progress to a permanent stage of the condition within three to four years. I was one of them--and none of you warned me. Of course you couldn't warn me if you didn't recognize it when it first occurred. You, attending childbirth physician and midwife: You missed it.

By the time I was 33, I thought I had figured out my medical problems. I was an intelligent, well-read individual and I had gone looking for answers in medical books. I found an answer that explained it all. I came to one of you and requested testing for this condition. I was surprised when you told me my test results came back "normal." But I still trusted you all. I didn't know then that you could make mistakes. I didn't know that you let insurance coverage influence your testing requests. I didn't know that you could cause me harm by not trusting my instincts about my body. That kind of knowledge would come many years later, but too late.

Chronic Fatigue Syndrome (CFS) was a popular topic in the women's magazines then. I read the articles and thought I had finally found a possible "diagnosis." There was no cure, however, so I was reluctant to even pursue it. And besides, I had no time for CFS. I had sole responsibility for my child. I had to work. Thank goodness for caffeine pills, which when taken in the afternoon, could help me make it home, feed my child, spend a little time with her and do whatever else it was that needed doing.

I guess I was starting to really feel bad most of the time, because I remember looking at the endocrinologists' listings in the yellow pages. Would they have a different test? And why did I keep thinking something must be wrong with my pituitary gland? I never called. I guess it would just be hard to tell them that the other doctors couldn't find anything "wrong" and maybe they could. That sounds so much like a hypochondriac, didn't it? These many years later, in light of what I now know I had, pituitary problems don't sound so far-fetched.

Which one of you doctors hurt me the most? That would be you, dermatologists, who saw me over a period of 11 years and never once connected the dots from the clinical presentation to the pathology reports. Why didn't you look at me? Why didn't you see the pale, cool and flaking skin? My nose was broadened and my lips were swollen. Did you not see the fluid in my hands? How did you miss the patchy vitiligo so often associated with my disease? You dermatologists are often the first to recognize these problems, because the skin-related symptoms of my disease are sometimes the first sign. You failed me. And not only did you fail me, you even caused further irreparable damage to my face.

My mother died when I was 38. I reviewed her autopsy report and saw abnormal findings in the same body part I had suspected was dysfunctional in me. When I told one of you in hopes of finally being believed, you just looked at me as if I was an imbecile to be tolerated. You offered no information. You only offered to do the usual test that you all have done when I asked. And once again it was "normal" -- according to you. Now more reliable, knowledgeable sources tell me that all my labs really weren't so "normal." In fact, those labs did indicate a problem. Furthermore, they tell me that the presence of the disease from which I suffer caused the lab test you did to be unreliable. Didn't any of you know that?

Do any of you know even know "the standard test" has new recommended reference ranges? If you know, have you called all the patients like me and reassessed them? I think you should. You thought your scientific lab test was so infallible, but patient history and clinical presentation is important. We are living, breathing human beings. We are not just lab values, even though if you had to have a lab value, you did have the elevated cholesterol and triglycerides. Did you not recognize that symptom either?

Sixteen years since childbirth and six years since I first told one of you what I thought was wrong, I started the decade where I visited so many of you. You were specialists in all the areas of my body that now weren't working right. I couldn't ignore it any longer. You, the psychiatrist, prescribed anti-anxiety medication to me (which I took for 10 years and stopped within two weeks of proper treatment) and we talked a lot. Ironically, in all those talks, you hadn't managed to discover that I had social phobia and social withdrawal, did you? Nor did you ever discover I had become ultra-sensitive to the comments of others. Even the OCD tendencies had eluded you. You didn't recognize these as possible signs. I have often wondered what diagnosis you did give me. Was it the usual "depression" those with my condition all seem to have gotten? Or did you diagnosis me with the popular "generalized anxiety disorder," another misdiagnosis we often get?

I think if you had been more knowledgeable about my disease/condition, you could have detected my lowered frustration level. Why did you never ask my about a loss of a sense of well-being? I didn't know "impending doom" feelings were so terribly abnormal. I even think proper diagnosis then could have saved me from future estrangement from some family members because it is true that this disease/condition changes us. They didn't understand why I was changing and why I could no longer participate in family celebrations. And yes, we can become irritable and intolerant. After my diagnosis, I read time and time again that it is supposed to be standard procedure to always check for my condition, yet you never even once mentioned it to me. I guess cured patients don't pay $100 plus per visit. And a short word to you, the plastic surgeon, did you know that some of us have self-image concerns? Maybe this is something you need to know more about too. One symptom of my condition is not healing well. In my case, my body attempting to finally heal from cosmetic surgery caused complications many years later.

When I visited you, the OB-GYN, complaining of menstrual problems, didn't you know it was a symptom? Did you think the ovarian cysts were also just coincidental? I really don't know how you, the gastroenterologist, who after the standard colonoscopy showed no abnormal findings, could just dismiss me by saying "Irritable Bowel Syndrome." How could you, after my multiple visits, fail to tell me about a condition that could cause my assortment of digestive problems? Why did you just want to medicate me? I read the drug insert and threw those pills away. I continued to live in pain, and why not? I'd suffered with various digestive problems for over a decade. Maybe I'm not so surprised at you, pulmonary specialist, because few seem to know about the "air hunger" and other respiratory problems my condition can cause. I hope those asthma medications (and courses of steroids) I took for over a decade didn't cause too much harm.

I was embarrassed to mention to you my earwax problems. I know now I shouldn't have even had to do that. Excessive earwax can be a symptom. I was surprised too to learn that so many of us have had unusual rib pain, called costochondritis. So I understand why some of you didn't recognize the origin of the problem that presented itself a few times. And you, the emergency room physician, you never even thought to think of my condition that could cause heart and chest pain symptoms, did you? Was that EKG really normal I wonder? Or was it just normal enough to send me home?

And you, one of the many GPs, you didn't notice how yellow I was when I was in your office two years before diagnosis. And you must have been so too busy for me, because you forget to the run the "test" I had now been requesting for almost 15 years.

Why didn't any of you really seem to see ME? You just saw the presenting symptom alone. I can understand how, in the beginning I looked like any other young woman.

But certainly, when you told me I had an "athlete's pulse" and you knew I was a smoker (thank goodness for that 15 percent metabolism boost) and didn't exercise regularly (way too tired to even think about it). Didn't that puzzle you? Why didn't the low blood pressure concern any of you? Was there no pill for that? And when I was in your office with severe respiratory infection that required steroid tapers and heavy antibiotics, did not one of you wonder why my temperature was below normal? What exactly was it about me that made you discount what I had figured out so long ago? True, after a while I wasn't even overweight, but I think I wasn't absorbing nutrient after all the digestive problems. I was actually somewhat anorexic in those last years and my sense of taste had long disappeared.

Many things I never even mentioned to any of you. I never told you that my legs itched so much I scratched them until they bled (you call it statis dermatitis).

Nor did I mention the restless legs that plagued me every night. That started long before there was commercial that alerted me this was a medical problem that I should want to medicate. I thought about seeing one of you for the carpal tunnel. But I typed a lot and I had become so surgery avoidant. That reminds me that one of you wanted to take my ovaries for those ovarian cysts, and I backed out the morning of the surgery.

I'm glad I did, as the ovarian cysts disappeared. I don't remember if I even mentioned the joint and muscle pain. The neck pain was really the most severe. And I guess sometimes we don't realize we are losing our hearing until it returns. I was getting older after all, so what was a little lack of concentration and being unable to grasp new concepts. And to tell the truth, I didn't even know I had loss color perception and that my world had grayed. I can only tell you that I remember vividly, pun intended, the day the colors of the world came alive for me after proper treatment.

And finally, I had to quit work. I didn't know it then, but at that point so much damage was done, I would never be able to return to work. Despite being college educated and having spent years achieving a certain level in my chosen field, I no longer had the mental and physical abilities to be a member of any work environment. Do you have a purple pill for that?

But dear doctors, when it got so much worse than any of this, I think maybe I had just given up on all of you.

I'd been in your offices for 25 years and my insurance companies and I had paid you so much money, but I just kept worsening. Honestly, I'll tell you now that in looking back, I see my cognitive abilities were in serious decline for a while. They do say that in this condition sometimes the first thing to go is one's own "critical self-analysis." I'm not sure which year it was exactly when I lost it. And I only now realize how flat my mood had become and why I never cried at anything. Not even my parents' funerals. Even my daughter's childhood was lost to me for a while, as was my own childhood. I guess when you're at the point where you can't even remember what happened yesterday (short-term memory loss), it just never occurs to you that it's not normal to not have much of a long-term memory.

I'm embarrassed to tell any of you that I suspect at times I might have been delusional. It was minor, but it was so unlike me. And of course it wasn't me. I became a person who could not cope with life anymore. I did not know that the voice in my head that kept saying "end it all" was a symptom called "suicidal ideation." I do remember that I looked in the mirror one time in the year before I was diagnosed and really didn't recognize my reflection. My hair was so coarse and dry, my eyebrows sparse, my color sallow. My body felt so bloated and uncomfortable. Clothes irritated my skin and I could wear certain shirts. I remember discussing eyelid surgery with my husband because my eyelids were so puffy and saggy. I looked and felt so old at 48. Naps were frequent during the day. I'd wash the clothes, and then I'd nap. I'd nap again, two and three and four times a day, dear doctors. At times, when I was laying on the couch a wave of sickness would just incapacitate me. I could not have moved if I had wanted too. I was dying and no one seemed to know it. And I didn't even bother telling any of you anymore, because I couldn't even make it to your office.

It might amuse you all to know that I actually got diagnosed when going to be evaluated for a low-temperature condition (Wilson's Syndrome) that, ironically, isn't even medically recognized. (Thank you to my husband, who jumped on that 96.4 temperature reading.) But thankfully, the doctor doing the evaluating knew the correct tests and correctly diagnosed me with the disease/condition that had robbed me of good health and joyful living. The day the office nurse called I just sat down at my dining room table and cried. And cried some more. Finally, after all these years, confirmation of what I suspected in my youth. Later on, I wrote some of you so you could put it in my record. Did you? I wonder because I never heard one "I'm sorry for how we have destroyed your life because we put all our trust in our lab test."

The answer?

I have Hashimoto's Disease, autoimmune thyroid disease.

It can cause symptoms of a low thyroid hormone condition (hypothyroidism) and as the disease damages the gland, it can progress to primary hypothyroidism. That's right, dear doctors, I only needed some thyroid hormone. I didn't need those pills you offered or the surgeries you recommended. Doctors, with all your medical knowledge and degrees, it was really was so simple. And can I say it? Yes, I feel entitled to say it: I TOLD YOU SO.

I told you what was wrong. Not once, not twice, but multiple times. I had the patient history and clinical presentation to support what I told you. Some of you even had evidence of a family history. Please know that every symptom I've told you here can be found in the medical literature as a hypothyroidism symptom. So why I must ask, did you rely on only one test? Wasn't I important enough to have been worth further investigation? Didn't my life matter? Didn't my daughter deserve a mother at her best? Didn't my husband deserve the same? And if any or all of you say you just didn't know about this, well that's just not good enough. I trusted you to know. I paid you to know. My life was in your hands as well as my future. And if you didn't know it all, you should have told me my trust in the medical profession was misplaced. Don't you need to repay me thousands for the services not rendered, dear doctors?

Ok, so I finally got properly diagnosed and treated. Twenty-five years worth of specific symptoms disappear in a matter of six months. Things aren't perfect, but much better. And I will not even how undertreatment of this condition is as big a problem as the lack of proper diagnosis.

Doctors, you must become aware of this disease and know its many manifestations. You must listen to your patient's history of symptoms and look for the physical evidence of the condition. You cannot rely on just the Thyroid Stimulating Hormone (TSH) test to detect thyroid dysfunction. There are too many reasons why it may be wrong. I've lived a life less fully than it could have been, had it not been affected by Hashimoto's Disease. And I am not alone. Truly, all of this would have been easier to bear had I been a unique case. I'm not. By now, I've heard hundreds of similar stories on Internet thyroid forums. Just variations of the same theme, symptoms screaming hypothyroidism and you all keep saying "normal."

I'm sure some of you are wondering why I'm writing. You would say, "You're treated! All is well!" And again, you would be incorrect. Long term, untreated hypothyroidism can cause permanent damage and it has me in a multitude of ways. I will never be who I could have been. I will never do all I would have liked to do. I cannot get back all the time I have lost. I wanted to walk on the beach with my husband and feel the sand beneath my toes. I wanted to take those trips to the Bahamas, Canada, California, Texas and other places we could have enjoyed together. I wanted to see my daughter's first apartment in another state and I was too tired to travel there and help her move. I wanted to have friends and family over for dinner. They were all simple desires. But you stole all of it from me when you didn't listen to me and correct a simple hormone deficiency in my body.

Dear doctors, do you see now that all the information you needed to have saved me was there? And after hearing my story, will you save the next person like me? Will you please not put all your trust in one lab test and consider patient history and clinical presentation? Could you, and I know this is asking a lot, even consider a therapeutic trial of thyroid hormone to see if the patient responds? I thank you all for listening. Or do you even hear me now?

Cindi S.

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