DEAR THYROID^TM

Dear Doctor Endo Man,

So I screw up the courage last week to actually mention how I’ve really been feeling ever since my thyroidectomy in 2002 and not sweep it under the carpet.  I told you that I was diagnosed earlier this year with adrenal fatigue that is being straightened out with supplements.  I tell you that I’ve had my FT3 and rT3 tested and the FT3 is low and the rT3 is high but both within their respective ranges  My FT3/rT3 ratio is only .0094, half what it should be.  You ask me if I’m seeing my primary care physician about the adrenal issue.  I say no, I’ve been seeing a nurse practitioner at a women’s clinic.  I can tell you are not impressed and neither was your nurse when I told her.

You tell me that my TSH and FT4 levels are the same as they’ve been over the last 4 years and they are in the normal range.  I ask what the numbers are.  You show me the computer monitor which has an excel spreadsheet with just the numbers (TSH=.40, FT4=1.68, and the antibodies results).  I ask for the lab work that shows the ranges and you say everything is in the normal range and you get the results electronically which doesn’t show the ranges.  Hello, I work in the medical field and know that this particular lab sends ranges electronically with the results so that’s a bunch of Bullsh**t.  Not to mention that nice thick folder you have of my thyroid medical history in your hand that I’m sure has a paper copy of the results.

So next question I ask is whether you test FT3.  You say, “Everybody converts T4 to T3 so that is not an issue and doesn’t need to be tested”.  Did you not just hear me say that my FT3 level is at the low end of the range?  I have the lab results in my hand to show you but you see that it’s not a lab you are familiar with and it was the nurse practitioner at the women’s clinic that ordered them so you are not impressed, and besides they are in the normal range.  I’m not sure whether I should laugh, cry, or run away as fast as I can.

You quickly have me hop up on the exam table to do an ultrasound of the little piece of thyroid that is left in my neck.  Hmmm, it appears that in the last year that little nodule has grown from .4 cm to .6 cm.  Ok, so I ask if there could be any correlation between the symptoms I’ve been having, both physical and mental, and the fact that the nodule has gotten bigger?  You don’t seem to think so as my TSH and FT4 have been the same for at least the last 4 years which, by the way, is when the nodule first appeared.

Doctor Endo Man, did you not just hear that I have been feeling like absolute CRAP for at least the last 4 years!  You say that it is probably my adrenals and if/when those get straightened out and if I still have symptoms we can look into lowering my dose of Levothroid.  Ok, so that makes no sense to me because ever since my surgery you have been keeping my TSH suppressed by having me on a higher dose (125mcg) because there was papillary cancer in a nodule that was removed.  At the time we both decided not to go the RAI route since it was localized and very small.  So, if you lower my dose couldn’t that kick start my thyroid into working again, which is NOT what we want to do?  Just to put the fear of the cancer devil back in me, you mention that by lowering my dose it could cause the nodule to grow larger and the cancer to come back.  So, tell me, why would you even consider lowering my dose?  I, again, list off many of the symptoms I have or have had and they are clearly not HYPER symptoms but HYPO symptoms.  You, in turn, list off a bunch of hyper symptoms and I say no, no, no to each of them.  Then you mention in passing that you would try lowering my dose before trying a combo drug.  By saying that you are admitting that there could be a need to prescribe a T4/T3 drug but you had said earlier that everybody converts T4 to T3 and a FT3 test is not needed.  Should I be at all confused by your train of thought on this?

So I leave your office after my marathon 15 minute appointment feeling like I just want to curl up and cry.  As I drive the hour back home and pass the wonderful women’s clinic that I found earlier this year I am grateful that I have an appointment with my wonderful nurse practitioner in a couple weeks.  She was the one who insisted on testing my adrenals and FT3 and rT3.  She is perfectly open to changing my med to NDT.  I’m sure I will spend part of the full hour plus that they set up for appointments discussing my appointment with you, Doctor Endo Man.  If she can refer me to a lab for a yearly ultrasound on my neck I will be very happy to fire your sorry a** because, as far as I’m concerned, the only thing you are good for is the yearly ultrasound.

Doctor Endo Man, I am no longer naïve about thyroid disease.  I will no longer put my health in your hands.  I spend 15 minutes face to face with you once a year.  This year I have spent almost 4 hours in 3 visits with my nurse practitioner.  We have discussed extensively the reasons why I could be feeling the way I’ve been feeling, had appropriate lab work done, and have worked together on a treatment plan that makes sense to me with the goal of helping me feel better.   That is the kind of practitioner/patient relationship that should be preached in every medical school and practiced in every medical office!  So, I hope you enjoyed our 15 minute visit because it may have been our last!

“Faren” (Jen) I’m a 41 year old Mother of two busy young children and am also a full time software developer for a medical software company.  I was diagnosed with a goiter in 2000 at my first prenatal appt.

Tags: adrenal issues in thyroid patients, Dear Doctor letters from thyroid patients, Dear Thyroid, goiters, lack of educated endocrinologists, managing goiters, medical mistreatment by endocrinologists, mistreatment of thyroid patients, post thyroidectomy symptoms, post thyroidectomy thyroid treatment, thyroid blog, thyroid community, thyroid support, Thyroidectomies, treatments for goiters

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