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Old 07-08-2007, 05:39 AM   #1
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A long story but real!!

HI All- I found this story on the internet. I personally can relate to so much it is a long read but worth it. Take care
Patty62


Subject: thyroid

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 vconcerned. 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.
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?

Last edited by patty62; 07-08-2007 at 05:44 AM. Reason: grammar

 
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Old 07-08-2007, 06:02 AM   #2
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lemondrop26 HB User
Re: A long story but real!!

that is so sad.

 
Old 07-08-2007, 07:04 AM   #3
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iona_23 HB User
Re: A long story but real!!

patty is this your story??? i must say that this made me want to cry. i too have hashimoto's and i'm slowly learning how to live with the disease. it is true tho, because my gp didn't want to treat me the first time because of the "normal" ranges. i wouldn't know how else to put the words that you wrote down. it makes plenty of sense. i wish that doctors would put time aside to hear wat exactly it is that we are going thru and not just go by test. oh gosh...my complaint can go on and on too but you got it right on target. thank you for sharing your story with us.

 
Old 07-08-2007, 07:24 AM   #4
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ellie_downunder HB User
Re: A long story but real!!

Patty Thankyou for pasting this story, it put cold shivers through me as I was reading it, I too have a lot of these Symptoms that she talks about, but my labs are in normal range, I am now going to insist that I see another Endo for a 2nd opinion. Cheers Ellie

 
Old 07-08-2007, 07:31 AM   #5
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pinky3 HB User
Re: A long story but real!!

Every doctor should get this "letter" in their mailbox.

I can totally relate.

 
Old 07-08-2007, 08:01 AM   #6
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sparkles916 HB User
Re: A long story but real!!

Just know you are not alone.

After the anger passed for me, I then turned to think of all the years I have lost (still losing since I am not completely well). How my life would have been vastly different. I started feeling poorly in my late teens and by mid twenties was out of my mind with anxiety. Still, it went on till three years ago, I had to go to the emergency room with the intent to check myself into the psych unit.

I too begged and hoped. But trusted my drs.

I am now 41, cannot work, and don't know when I will be able to work. All the years of education down the drain. My brain is still nothing like it used to be. I describe it as having a perpetual hang over.

I might have been married by now with a family having had a career for years. But, instead I seem to have begun avoid people and situations that would stress me. I put off all decisions and made no moves in my life becasue of the constant anxiety. I was not living, just surviving.

I also would have done more, but for the crippling fatigue. How much I missed and still miss.

I don't know how I will deal with mourning for my lost years and opportunities. I still find it hard to stop blaming my lack of will and ambition and instead allow myself to blame the disease and the drs who did not treat me. I know when I can finally mourn and let it pass, I can move on. I am still not healed enough for this undertaking as yet. But every now and then, a tear drops, when I look at the past 15 years.

At least, now, I am looking forward to the future, even if I am not able to really do much about it as yet. I hold on to this and remind myself of it everyday.

 
Old 07-08-2007, 07:24 PM   #7
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patty62 HB User
Re: A long story but real!!

HI All
This could be my story - I can relate to 90% of it, however I did not write it. I remember the first time I read it- I just broke down and sobbed-it was so real, raw- so true.
I have not meant to upset anyone and as she says "if it can save one person going through years of agony.."
I remember sending to my GP (what a joke) he was actually reading it when I walked into the surgery the next day- he commented but honestly I don't know how much sunk in
I do have Hashimotos disease. I posted it to share and hopefully help at least one person not to go through this pain.
Love
Patty62

Last edited by patty62; 07-08-2007 at 07:26 PM.

 
Old 07-08-2007, 07:47 PM   #8
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pinkprincess3 HB User
Re: A long story but real!!

Patty...made me so sad to read....all doctors should get this letter in their mail...thanks for sharing it with us

 
Old 07-09-2007, 05:21 AM   #9
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happymedium HB User
Re: A long story but real!!

I just read this & I had tears in my eyes, because thats just how I feel I am being treated right now, "normal" with positive antibodies. I feel my body is slowly falling apart, I could relate to so much of what the lady says. Cheryl

 
Old 07-10-2007, 10:58 AM   #10
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juner50 HB User
Re: A long story but real!!

I'm making copies and sending it to the Drs that told me TSH is the only necessary test. Maybe it will make a difference for someone else.
Unfortunately some of them are DEAD LOL!

 
Old 07-10-2007, 03:35 PM   #11
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aria72 HB User
Question Re: A long story but real!!

I'm not sure how to do this, I don't use the computer much and I've never been on a message board before. I'm sick, desperate, and decided I had to try to figure things out for myself because for the last 10 years, I've been getting worse, and my doctors aren't helping me. I typed in all my weird and varied symptoms--- even the ones I have been told "can't possibly exist" or are "just coincidental and nothing to worry about", and this story is what popped up... I don't know what to do; I had a thyroid test once, and it was normal, but the thing is, I already have Crohn's Disease (for sure- I've had several operations, and it runs in my family) and a few years ago, I was also diagnosed with endometriosis (although only one of the many ovarian cysts I get was ever an endometrioma). So, I was beyond shocked to see yet another illness; something I've never heard of before, describe my symptoms almost exactly--- including things that have always been a mystery, like my below-normal temperature and blood pressure, extreme sensitivity to fabrics on my skin, inexplicable fatigue despite several naps a day, what I call "mind fog", pain in my legs and arm, scratching my legs at night and waking up with scabs, being constipated even though the trademark symptom of Crohn's is diarrhea, anxiety and depression for no reason, and a big swollen gland at the base of my throat. Other symptoms, like weight fluctuations, I had put down to the Crohn's, even though sometimes it didn't seem to make any sense. I also had a lot of UTI's when I was young, and in my early 20's, had to have my urethra stretched a few times. I've had blood in my urine my whole life, but they could never find a cause, so they call it "benign hematuria". The past few months, I have been worse, especially with the congestion. I realized the other day, walking by the neighbour's freshly cut grass, that I could only barely get the faintest impression of the smell of it. And I'm so, so tired; it takes all of my strength just to get up and shower, then I need to lie down for an hour to recover, and then I'm lucky if I get one thing accomplished in a day before pain or exhaustion does me in. Most days it just doesn't seem worth getting out of bed. Am I crazy, or could that thyroid test have been wrong? I have an appointment tomorrow afternoon with my g.p.--- should I mention it? Should I ask for another test? What should I do? Please help me, there are so many things I want to do with my life that I've never been able to do, and I'm running out of time!
aria72

 
Old 07-11-2007, 01:19 AM   #12
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Re: A long story but real!!

Dear Aria
The fact you already suffer from an auto-immune disorder -crohns disease increases the risk of suffering from another- whether it be Hashimoto's or something else. How long has it been since you had your thryoid last tested?
You have nothing to lose.. Make sure you ask the doctor to test your TFT's-meaing Free T4, T3 and TSH not just Tsh- as you will read on this board too much emphasis is put on the one test. Not only that they rely too much on their blood tests-if you get a chance this evening write anything down-how you feel, take a copy of the original post-it's your life and you have a right to live it. Good luck and keep us informed. The more you come here the more you will learn
Take care
Patty62

 
Old 07-11-2007, 09:47 AM   #13
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sparkles916 HB User
Re: A long story but real!!

Quote:
Am I crazy, or could that thyroid test have been wrong? I have an appointment tomorrow afternoon with my g.p.--- should I mention it? Should I ask for another test?
Absolutely ask for it.

Instead of worrying about whether to ask for the thyroid tests, you should be actively pursuing all leads, with the appropriate tests. I know this is contrary to what the medical community might consider to be good practice, and good for their possible financial interests in not testing people. But, you only get one shot at life. The drs who treat you are obviously leading active lives, they are not thinking of you day in day out as your quality of life diminishes. It is only through your persistence and brgining it to their attention that you will get any response and, hopefully, action.

Try reframing your world-view with regard to solving your health problem(s). There is no test that you should not ask for given your condition.

 
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