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Peripheral Tissue Thyroid Hormone Resistance
avatar
kiznkitten posted:
Has anyone been diagnosed definitively with Peripheral Tissue Thyroid Hormone Resistance? I shorten it to PTTTHR, it's easier to type. It is characterized by NORMAL thyroid blood panels and all of the currently existing known hypo-thyroid side effects. Brain fog and muscle aches and pains and chronic fatigue are at the top of the list for me. I am having an endo crisis. The endo I saw today literally said she'd rather see me dead than treat me with the super high doses of T3 I need! I have been on this protocol for 4 years--it would have caused severe damage by now if it was the wrong protocol. The high doses of T3 reversed Coronary Artery Disease and Diabetes as well as numerous other problems! The starting dose for this disorder is 125mcg of T3. That much T3 would cause severe damage, or death to someone who doesn't have this! I am curious to know if anyone else in this forum has PTTHR?
Thyroid Blood tests are NOT accurate for diagnosing Thyroid problems! Your symptoms are the key!
Reply
 
avatar
An_245108 responded:
I have been Hypothyroid my whole life. When I was a child I took Armour thyroid. When I entered college I was switched to Synthroid. For the next 18 years I felt awful and no one could figure out why. My T4 and TSH test results came back great every 6 months for 18 years. My cholesterol and triglycerides were horrible my fasting glucose was 115. I found out Armour thyroid was still manufactured and asked to be switched. For the last 7 years I have been on Armour thyroid. My TSH is .03. Yes, .03, totally supressed. My free T4 and total T4 are right in range. My cholesterol and triglycerides are fantastic and my fasting glucose is 95. I lost 35 pounds and most importantly I feel GREAT. None of the Dr's I saw tested T3 levels. My guess is because T3 molecules are transient so the levels are hard to pin down. My doctor thought that I responded well to the Armour thyroid because of the T3 in it. I wasn't officially diagnosed with PTTTHR, but the Dr thought I wasn't processing the T4 to T3 very efficiently where I needed it. My post probably doesn't help you much, but I thought I would share my story just in case.
 
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Niloo responded:
I have been diagnosed with Partial peripheral tissue resistance to thyroid hormone and currently take 350 mg of Cytomel. I have been on the gamoot of different medications and after 3 months it seemed they woould lose their effec. The first person to Diagnose me was the wonderful late Dr, John C Lowe who has since passed away. I recently found a fantastic neuro endocrynologyst who pracitces in NY his name is Dr. ALan Jacobs. He has sees patients with partial peripheral tissue resistance to thyroid hormone. You can google him . He now works together with my internists and I take proponolol since my heart does respond from time to time and I get heart palps.

Good luck. I know it is really frustrating to deal with the regular docs since we are so outside the box.
 
avatar
kcannings replied to Niloo's response:
Hi Niloo,

Would you mind if I contacted you directly to discuss this? I have consulted with the doctor in NY as it appears that I too have Peripheral Tissue Thyroid Resistance. I would like to ask you some questions regarding your treatment, etc.

Thanks!

You can email me at: kcannings@gmail.com

Kelly


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Partial Thyroidectom 1/07 Synthroid 75mcgs TSH 2.5

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