Just goes to show you that University doctors can be wrong, too!! Don't forget that even though some endos might specialize in diabetes they can still treat thyroid. My endo also specializes in diabetes, but in some ways I believe that's to my advantage, because I can pretty much drive my own treatment.
When you call the different doctors, make sure you ask if they test both FT3 and FT4, if they treat based on those vs TSH, if they are willing to prescribe T3 medication.
Can anyone tell me how to post a question to the Thyroid Doc in the Experts area? I can't seem to find instructions in how to do that?
This is a Dr at the U of I!
I did a search for endocrine Drs in my area - most specialize in Diabetes, but some listed specialization in "Metabolic Disorders" - which includes Thyroid issues too I would think. Not a single one outside the Internal Medicine clinic at the U. I am going to call them to see if I can come see someone without my Dr making a referral first.
My first preference would have been to see an Endocrin Doc outside the U (since many are reluctant to go against colleagues) - but there isn't a single one!
Thank you I have saved this to print out.
Thought you'd find this scientific study to be interesting info for your doctor. Although I'm sure their minds are made up and nothing will change them.
From a study published in the British Medical Journal Volume 293. Here is the link and a couple of quotes from the link.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1341585/pdf/bmjcred00253-0040.pdf
"When you are being treated with thyroid hormone, the TSH should be very low as long as the T3 and T4 are not too high. More often than not, doctors will lower a patient's thyroid medication based on the TSH being "too low" without measuring the actual levels of the hormones directly. This goes back to our training when we are taught that a low TSH is a sign of an overactive thyroid gland; this is true but NOT IN A PATIENT TAKING THYROID MEDICATIONS. A low TSH should be the goal of treatment, not a sign of overtreatment as long as there are no signs or symptoms of overtreatment.
"It is clear from table IV,
however, that serum thyroid hormone and thyroid stimulating
hormone concentrations cannot be used with any degree of con-
fidence to classify patients as receiving satisfactory, insufficient, or
excessive amounts of thyroxine replacement. There is little dif-
ference between the ability of concentrations of total and analogue
free thyroxine to detect over-replacement; the poor diagnostic
sensitivity and high false positive rate associated with such measure-
ments render them virtually useless in clinical practice. Concentra-
tions of total triiodothyronine, analogue free triiodothyronine, and
thyroid stimulating hormoneareindicating over-replacement.tions of total triiodothyronine, analogue free triiodothyronine, and
thyroid stimulating hormone are also incapable of satisfactorily
indicating over-replacement. The tests perform equally badly in detecting under-replacement."
"Our findings emphasise the need for laboratories to make their
users aware that the reference ranges for serum thyroxine, free
thyroxine, and thyroid stimulating hormone concentrations in
patients receiving thyroxine replacement are considerably different
from the conventional ranges; they should also point out the
limitations of these ranges."
This study was further strong evidence that when taking thyroid meds, test results, especially TSH, are too variable and not reliable to use for dosing a hypo patient. Conclusion was that clinical treatment is the best for the patient. This was very clear in their statement that, "We consider that biochemical tests of thyroid function are of little, if any, value clinically in patients receiving thyroxine replacement. Most patients are rendered euthyroid by a daily dose of 100 or 150 ,mcg of thyroxine. Further adjustments to the dose should be made according to the patient's clinical response."
Of course treating a hypo patient clinically would require the doctor to actually listen to the patient and determine what may be causing symptoms, rather than just running tests and then diagnosing by whether the results fall within the so-called "normal' ranges that we all know are flawed. A computer could diagnose and treat a hypo patient equally as well as many doctors who have the "Immaculate TSH Belief" and only want to use "Reference Range Endocrinology".
Just in case another voice can add encouragement -- get a new doctor, yours will keep you ill, because she's looking only at TSH.
I had a doctor that did that and I truly thought he was going to kill me. BTW, my TSH lives in the basement at a whopping < 0.01, so I've been through your struggle; in fact, still go through it.
Iowa City has some excellent, innovative doctors; have you tried contacting anyone at the University?