Frustrated at endo, need to increase TSH

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Long story short, ive been on tapazole for about 7 months. My free T3 and 4s are in range, my dosage is 5mgs and 2.5mgs alternating daily. I feel fantastic overall. However, my TSH has remained <0.01 since diagnosed 7 months ago. From everything I've read, this is normal due to the antibodies in our blood. My endo has been great until now. Saw her yesterday and she's telling me I need to increase my tapazole in order to bring up my TSH. I told her I don't want to, and why would I want to? I feel great with where my Free Ts are, increasing my meds will only make me go hypo. She told me "I have to" bc it's going to affect my heart. I'm so frustrated. I've heard acetyl L carnitine will help, I'm willing to try because i DONT want to increase my meds. How much should I take to start?

On a side note, my endo keeps telling me my vitamin D and iron deficiencies, and elevated blood pressure have nothing to do with being hyperthyroid (graves) and trying to convince me I probably always had high blood pressure before I had graves. I told her It's not true because I used to always get regular routine pap and physical done and when I was pregnant with both kids my blood pressure was always excellent. It was never an issue until now. I liked my endo at first but she's starting to annoy me. I just feel like she's not listening and doing all the classic wrong stuff like dosing me based on my TSH.

Please advise!

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  • Posted

    Ah you are where I was at for 2 years after being diagnosed.  I agree with you about not raising your Tapazole because while this is a very good med to manage this condition, higher doses do affect liver function more than lower doses.  I got MY TSH up while I was on 10 mg of Tapazole by first using Regular L-Carnitine, 3,000 mg a day.  It only raised TSH slightly so I then took the Acetyl-L-Carnitine.  If you are going to try this, take no more than 1,000 mg daily and preferrably 500 mg.  In my case, when my TSH would not rise initally after 2 years, they wanted to do Radiation therapy but I refused.  The only reason your doc would recommend this is that the medical profession is not educated in supplements (although I did meet a doc who said she was but she was in Med school in recent years), older docs don't get this exposure at all and even if they do, they are slow to change.  You also need to supplement with Vitamin D, 1,000 to 5,000 units daily.  Check your Magnesium level also and if deficient add that one.  The one GREAT BIG CAUTION with Acetyl-L-Carnitine is that is works very quickly in raising your TSH so frequent lab tests and dosage adjustments to both Tapazole AND Acetyl-L-Carnitine are necessary in order to avoid the other extreme of HYPO which I have seen happen to many who tried this.  I was fortunate that I had a family doc cooperating with me in frequent blood test monitoring and an Endocrinologist who would adjust my Tapazole dosage frequently based on my lab tests. My Endo adjusted the Tapazole dosage and I adjusted the Acetyl dosage.  All the best to you and keep us posted.

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    • Posted

      Thanks Linda. I have read many of your posts about acetyl l carnintine so I have high hopes. Just another question, how often should I get my blood lab done? Right now I get my labs done once every 4-6 weeks.

      I just don't have much confidence in my endo anymore. I may consult my family doctor for a second opinion.

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    • Posted

      It's going to happen fast once you start taking it.  Testing minimum every 3 weeks if you can.  Start on the 500 mg.  You will see an upswing in your TSH very quickly.  225 mg capsules are also available but not as readily as 500 mg and up.  So when I needed to lower it, I took 500 mg every other day.  Did find the 225 mg and took that as an adjustment in dosage too.  Unfortunately, the Acetyl-L-Carnitine is relatively new.  I read a research paper on the use of the Regular L-Carnitine so it has been medically documented but there is nothing on Acetyl.  That was my experimentation.  My Endo was shocked at my results!  As my levels improved, I started getting palpitations and had to discontinue it so once you are in range, you might also feel such side effects.  My last check up in October revealed antibodies were not detectable.

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    • Posted

      By the way, my TSH at times rose to 2.5 and while that is within the normal range of 0.70 to 3.00 or 5.00 (depending on your lab), I really want to keep it at 1.5 so my doc would always adjust dosages if it hit 2.5.  I feel better at a TSH of 0.70 to 1.5 and try to keep it there.
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    • Posted

      Thanks again, I will update you on my results. i hopefully the health store near me carries it smile

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