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Discussion Starter · #1 ·
Hello,
So glad to have found this message board. I'm happy to share my story if it stands the smallest chance of helping someone else. I am a 30 year old female and my mother, mother's mother, and mother's sister all have thyroid problems. At 14 I was diagnosed with hyperthyroidism (only one mild symptom of a slight hand tremor in specific circumstances but according to my doctor, my thyroid output was surprisingly high for such a mild symptom). After a short treatment of PTU I returned to the normal TSH range. Fast forward to age 28 and I gained 20 pounds in a few months, felt emotionally off, and then my doctor discovered my TSH was at 20. A few months after starting levothyroxine, my TSH levels reached normal but my symptoms persisted and I started to feel much worse. I started to have symptoms of anxiety, depression, nails breaking, hair thinning, bruising, difficulty sleeping and a tightness in my chest. It felt like I was constantly wearing a weight around the base of my neck and upper chest. I had hypertension yet a low heart rate and it was an awful combination of feeling cold, exhausted, and yet tense. It was difficult to stay awake after 8pm and I never felt rested in the morning. I went through several doctors trying to get them to test something besides my TSH but they insisted on testing EVERYTHING else because "your TSH if fine, so your thyroid is fine." One doctor even argued that since she had hypothyroidism and often felt cold, my symptoms were no big deal...and she was convinced I had depression. Three requests to see endocrines were denied. Finally, I met with an integrative medicine doctor and he actually listened me--a first from a doctor during this awful ordeal. He was fully supportive of giving natural desiccated thyroid a try. I've been on compounded natural desiccated thyroid now for over a month and my blood pressure is back within the normal range, I have energy, can stay up in the evening, sleep through the night, and the tightness in my chest is nearly gone. My emotions are back in check and I feel like I am finally getting my life back--my only regret is that I doubted my instincts from time to time and that this ordeal took too long. Please get help if your medication is not working for you. Everyone is different and everyone needs to find the treatment that works for them.
 

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cahr said:
Hello,
So glad to have found this message board. I'm happy to share my story if it stands the smallest chance of helping someone else. I am a 30 year old female and my mother, mother's mother, and mother's sister all have thyroid problems. At 14 I was diagnosed with hyperthyroidism (only one mild symptom of a slight hand tremor in specific circumstances but according to my doctor, my thyroid output was surprisingly high for such a mild symptom). After a short treatment of PTU I returned to the normal TSH range. Fast forward to age 28 and I gained 20 pounds in a few months, felt emotionally off, and then my doctor discovered my TSH was at 20. A few months after starting levothyroxine, my TSH levels reached normal but my symptoms persisted and I started to feel much worse. I started to have symptoms of anxiety, depression, nails breaking, hair thinning, bruising, difficulty sleeping and a tightness in my chest. It felt like I was constantly wearing a weight around the base of my neck and upper chest. I had hypertension yet a low heart rate and it was an awful combination of feeling cold, exhausted, and yet tense. It was difficult to stay awake after 8pm and I never felt rested in the morning. I went through several doctors trying to get them to test something besides my TSH but they insisted on testing EVERYTHING else because "your TSH if fine, so your thyroid is fine." One doctor even argued that since she had hypothyroidism and often felt cold, my symptoms were no big deal...and she was convinced I had depression. Three requests to see endocrines were denied. Finally, I met with an integrative medicine doctor and he actually listened me--a first from a doctor during this awful ordeal. He was fully supportive of giving natural desiccated thyroid a try. I've been on compounded natural desiccated thyroid now for over a month and my blood pressure is back within the normal range, I have energy, can stay up in the evening, sleep through the night, and the tightness in my chest is nearly gone. My emotions are back in check and I feel like I am finally getting my life back--my only regret is that I doubted my instincts from time to time and that this ordeal took too long. Please get help if your medication is not working for you. Everyone is different and everyone needs to find the treatment that works for them.
Welcome to the Board and thank you so much for sharing your story!! Yes; I too was dying on Synthroid and/or Levoxyl but making the change to the porcine gave me my life back.

I am so so happy to hear of your long over due healing pathway.
 

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Hi Cahr,

Did anyone ever test your thyroid antibodies? It sounds like you may have Hashimoto's, which is an autoimmune form of hypothyroidism. In the earlier stages of Hashi's. you can go through periods of hyperthyroidism.

Since the desiccated thyroid meds have helped, you may also have a conversion problem, but there is no way of knowing that without seeing if they tested your free T3 and free T4 before starting the new med. Some of us do not convert T4 to T3 well, and that is why we need more than just the levothyroxine.

Thank you so much for sharing your story, and I am sure you will find others here with similar experiences.

Welcome to the forum.

Hugs

Phoenix
 

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Discussion Starter · #4 ·
Hi Phoenix, thanks so much. About the test for antibodies--both anti-thyroglobulin and microsomal were negative, so no that would not fit Hashi's. My thyroid has never been enlarged (same for my mother/aunt/grandmother) so I'm not sure what exactly is going on with the thyroid issues in my family.
 

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Hi there and welcome! It's so frustrating when doctors won't listen to what you are saying. I'm so glad you found someone new! Thank goodness! I'm glad you found us and feel free to jump in anywhere!
 

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cahr said:
Hi Phoenix, thanks so much. About the test for antibodies--both anti-thyroglobulin and microsomal were negative, so no that would not fit Hashi's. My thyroid has never been enlarged (same for my mother/aunt/grandmother) so I'm not sure what exactly is going on with the thyroid issues in my family.
Did they check your TSI or TPO antibodies? The TPO is much more common with Hashi's, and the TSI is for Graves'. Although, you can have Hashi's and not have any antibodies eveident for a while, it is not very common.

I'm glad the new meds are working for you, and I hope you continue to improve.

Phoenix
 
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