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Diagnosing/Treating Hypothyroidism: A Patient's Perspective

Jul 06, 2016 - 16 comments

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.

March 2021
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.

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by IntuitiveEater, Aug 06, 2016
Thank you, Gimel for your work. It's very much appreciated.

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by guest989, Oct 06, 2016
WOW, I am so happy to have stumbled onto this. I have spent way too much time scouring the internet for anything I can find to help on this topic, and sorting through all the noise is knowing what to trust is...daunting. And overwhelming. THIS is perhaps the most helpful single thing I have read to this point in my search. Thank you SO much for your efforts, and know that it is helpful.

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by Territl01, Jan 28, 2017
Very informative and even easy for a novice to understand.  This is going to help a lot of people.

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by jennyL4684, May 03, 2017
Thank you so much  Gimel for you help. I hope I can find a right thyroid doctor for me.

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by Lori_Edz, Feb 14, 2018
This is amazing and thank you so much for your resilience and dedication!!

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by ASA96, Jun 18, 2018
Thank you for all your help in answering my questions this weekend.  I enjoyed reading your journal. I really appreciate you helping the community by addressing and answering our concerns.  

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by Sunshinemel, Jul 20, 2018
Thank you Gemil for your persistent drive in seeking well informed testing and results. I learned after my Graves diagnoses that the UK was much better at diagnostics including symptom based issues along with blood work. That is terribly lacking in the US. I feel this may be changing as my pc doctor is sincerely learning as much I now, but was not until I could suggest informed requested testing via this wonderful forum. I will continue to post my results and protocols as I journey forward. It takes a village and I am, as I continue to state, utterly grateful that my husband found this village.

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by Craftygirl_SA, Aug 02, 2018
I am so grateful for the work you put into this!

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by terricawley, Aug 18, 2018
WOW!!! All I can say is “Ditto” to all the preceeding comments and a very hearty & heartfelt THANK YOU!!

Keep up your awesome work!

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by judithmhol, Aug 26, 2018
Wow it is so nice to have someone from the “other side” so to speak. As a patient who doesn’t have any medical background, as most of us don’t,   We tend to want to trust our doctors and that their care is comprehensive. But I always have this little voice in my head saying  that I hope this doctor is paying attention. This thyroid situation is amazingly complex and as I read everyone’s stories it kind of breaks my heart that there is such a great divide. Thank you so much for your time and expertise and Karen

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by allenS1959, Oct 17, 2018
Thank you, thank you, thank you so much. There is some hope in finding a solution to my health issues.

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by ElleHolloway, Dec 07, 2018
Wow!  Thank you sooooo much for writing this. Very good info and I hope its ok if I print it? It is good to hear a patient's perspective on this.  Excellent information gimel!!!

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by Gracevd70, Jan 11, 2019
Wow Gimel...Great info.  Grace

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by Norty1, Feb 09, 2020
This is so helpful and appreciated.  Thank you for taking the time to help us.  This can be a frustrating and scary journey to do alone.

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by Meriam881, Dec 15, 2020
Very interesting study. Endos all over the world should stop judging by TSH especially when a patient is on a thyriod replacement hormone.Thanks for this great study and for sharing your journey with us.

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by Vernamdt12, Apr 19, 2021
Your post is SO helpful.  I’ve been on my own for years and to have someone listen feels like a “load off”.  Allergies to anything can also be a factor.  

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