Jul 06, 2016
I have been a hypothyroid patient for over 45 years. For a long time the doctors would not diagnose hypothyroidism because my TSH was within the so-called "normal" range. When I finally talked my doctor into thyroid med, it did help some and so we continued to increase over the years until I was taking 200 mcg of T4, but I still had lingering hypo symptoms. Almost 8 years ago I ran across this Forum and learned about the importance of Free T3. Up til then I had only been tested for TSH and Free T4. I got my Free T3 tested and confirmed as low in the range because my body was not adequately converting T4 to T3. My doctor at that time agreed to switch me to Armour Thyroid to provide a source of T3 along with T4. After tweaking my dosage to get my Free T4 to mid-range and my Free T3 into the upper end of its range, I felt better than I could even remember.
As a way to pay back the help I had gotten on the Forum, I started participating on a daily basis. In order to answer members' questions I started doing a lot of research on the internet. I also started giving the info to my current doctor. She was very interested and started trying some of the things I told her about testing and treatment. I have given so much information to my own doctor that she invited me to attend a monthly meeting of interns and other doctors at the local hospital and relate my experience as a hypothyroid patient for 45 years and also what I had learned in my research. I prepared a presentation and it went well, although some remained skeptical of what I told them, others seemed to find it compelling.
Afterward I thought about why doctors predominantly stick to TSH and FT4 and pay no attention to symptoms. I also have concluded that the professional thyroid associations like the AACE and ATA are not going to change, period. So I thought maybe if we could not get change through the front door, so to speak, perhaps we should try the back door. So I started working on a paper on Diagnosis and Treatment of Hypothyroidism, from a patient's perspective. I had been in contact for some time with two people who have published papers on thyroid related subjects, and one of them was a retired Endocrinologist from Germany who is widely published and highly respected. The other co-author likewise has done a lot of research and written papers related to hypothyroidism. I told them of my idea to write a paper that explained the basic information about hypothyroidism in a concise manner that could be readily understood by patients and then go further and present discussion and scientific evidence that supported the recommendations given to patients. The thought was that if we can make this readily available for hypothyroid patients, then they can give copies to their doctors and inquire about their testing and treatment. Along with that would be enough information to convince doctors of the validity, if they were open-minded and would read through the scientific evidence.
So my co-authors agreed and we have finished our work on the paper and it is now available through the Thyroid UK site. I am positive you can get some good info from the paper that you can use with your doctor to try and get the right tests, and clinical diagnosis and treatment as we describe it.
My co-authors and I have just completed and posted a new paper on Managing the Total Thyroid Process. It is shorter and more comprehensive than our first paper and it clearly explains why TSH is essentially inadequate as a diagnostic for thyroid status. It also suggests how patients should be diagnosed and treated. I think you will find it interesting and useful to get what you need from your doctor. The doctor may not agree, but will be unable to refute with science what is presented in the paper.