Extremely low TSH but other thyroid test values normal??

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Hi 

I was wondering if someone can help me here. My mother, 55 years of age and always been a hypothyroid patient (runs in the family) recently got her thyroid testing done. Surprisingly, her TSH came way too low. i.e. about 0.005, whereas other values, T3, T4 and Free T4 were all within normal range. She has been having bad insomnia for past many weeks (ever since her TSH values went down), has frequent bouts of heart palpitations, is fatigued and has digestive problems-sometimes diarrhea and sometimes constipation. She also is pretty depressed, most likely because she cannot sleep at night at all. Her endo says he won't start any hyperthyroid medicines because the FT4 is normal. However, it has been atleast 2-3 months, her TSH hasn't moved. She was previously taking hypothyroid medicines but now stopped them. She is extremely perplexed as to what to do. Has anyone here experienced something like this or can guide as to what is happening? I have heard about Subclinical Hyperthyroidism, but not sure if this is the case here? Thanks a lot for the help!

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  • Posted

    I was diagnosed with Graves disease when my FT3 and FT4 were only mildly elevated out of range.  TSH however, less than 0.001.  Started on Methimazole 10 mg and FT3 and FT4 normalized but TSH would not rise in two years.  I took Acetyl-L-Carnitine in addition to my Methimazole and my TSH started to rise rapidly.  In your mother's case, if she was hypothyroid was she tested for Hashimoto's antibodies?  Many practitioners do not test for this because they treat hypothyroidism with thyroid replacement without testing for antibodies.  However Hashimoto's is very sensitive to either thyroid replacement or thyroid blocking drugs.  She needs to see what happens when her thyroid replacement drugs are stopped and if the hyperthyroidism persists then she needs to be tested for Graves and Hashimoto's antibodies.
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    • Posted

      Hello Linda, this is Tugce from Turkey. Our situations are similar so I wanted to ask your opinion. I'm 35 diagnoes with Graves 7 months ago. Started on Thyromazol ( 5 mg Metimazol ) at first 2 a day, than 2 and a half, 3, 3 and half and finally for the last 3 months i'm taking 4 a day. my ft3 and ft4 turned to normal levels but my TSH is still so low.

      I'm breastfeeding thats why I started with 2 pills. My doctor tells me normally graves patients use  1 or 1,5 years of medication then stop and then if the illness reoccures meds again or operation. In my situtaion, he says, this progress shows that operation could be needed because TSH is still low and 4 pills is a lot. 

      my question is: what can i do to normalize my tsh? you mentioned acetyl-carnitine do you think it would help me too?

      thank you in advancesmile

      thank you so much

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    • Posted

      May I chime in here for what I know as a GD patient myself: taking anti-thyroid med alone won't or have little effect on raising TSH. As Linda mentioned, ALC or LC can defend/help pituitary to produce TSH. Other treatments which can help improving the autoimmune-caused GD include dietary change, supplements, herbs, and lifestyle change, etc. Recovering from GD is a long journey to go.

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    • Posted

      I think your doc is increasing meds for low TSH and that won't work.  Whatever meds dose normalizes your Free T3 and Free T4 hopefully in the middle of the normal range is the correct dosage.  My TSH remained at less than 0.001 for two years until I took further steps.  I got my Free Carnitine and Total Carnitine levels measured and they were low so I started on 3,000 mg of Regular L-Carnitine.  This raised my TSH to 0.12 (still not normal but headed in the right direction).  Then I added vitamin D, 1,000 to 5,000 IU per day (this was also measured as deficient.  Magnesium was low so added that.  I played around with the Carnitine dosages and experimented with different types of Carnitine and the one that is most effective in raising TSH when it is taken with meds is Acetyl-L-Carnitine.  However, I caution anyone who tries Acetyl to really monitor it closely and adjust it by either decreasing the dosage of it or stopping it altogether.  As your TSH rises, your doc should lower your meds dosage.

      I am still on a low dose of Methimazole  (2.5 mg 3 or 4 days a week).  .Recently my TSH fell from 1.5 to .51 and I took 500 mg of Acetyl-L-Carnitine on meds days and 500 mg of Regular L-Carnitine on off meds days and got it back up to the 1.0 range.   

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    • Posted

      Mike Hello,

      Thank you so much for your advice. May I take some more details because I've been only taking meds , that's also what my doctor tells me to do whenever I ask what else I can do.

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    • Posted

      Hi Tugce, I think I have exhausted helps for your case except emphasizing some natural treatments as I and Linda have mentioned (especially taking ALC for lifting your TSH). Wish you well.
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    • Posted

      Also, may I stress this: Most endo, especially young and inexperienced, won't and can't give advice, directly or indirectly, for alternative treatments because those options are out of their medical training. At most, they will turn you back to your PCP for advice. Then your PCP may or may not offer (external) referrals to natural treatment specialist or nutritionist, but they are not covered by standard health insurance, although they are formal health professionals specifically trained as natural treatment doctors or specialists. I hope you will be able to take control of your own body at least with some suggestions here as appropriate for your condition or take the natural path as affordable to you that can better chance you a full recovery.

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  • Posted

    Hi Salvi81.  I am 50 years of age and had all the symptoms you have just drescribed but had very elevated t3 and t4 levels. I have since been diagnosed with Graves disease and have had a total thyroidectomy.  Please continue to watch your mother and get retested if necessary as it is not a easy or quick fix and will take time to get better..    Good luck
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    • Posted

      I'm 53 and new with Graves' disease. I just start taking Methimazole 10mg (taken 3 tablets) once a day. I have low 0.005 TSH level. I had palpitation, I'm taking propranolol. I have sweating, anxiety, body aches, lost of weight. This disease scared me because of eye disease. I ask you, how long you had Graves' disease? How long the Antithyroid medicine work to reduce all the symptoms? Did it affect your eyes? How was thyroidectomy went? I was thinking about having thyroidectomy and don't want to go through all the symptoms especially eye disease. I hope you are well.

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  • Posted

    Yes, hyperthyroidism, the most likely cause for this condition would be Graves disease, I hear.  You can go from hypo to hyper so it is possible.  I would ask for  TSH antibody test to confirm Graves and beta blockers, ie propranolol, in the meantime to stabiilise the heart palpitations which are a concern.  I was recently diagnosed myself with all of those symptoms.
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  • Posted

    I have been dealing with this issue for 3 years now. TSH comes back high lower medication TSH then comes back low up the meds T4 always is in normal range. Never tested for Anti bodies.
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    • Posted

      That kind of thyroid picture I have always seen in Hashimoto patients.  Unfortunately many doctors treat hypothyroid patients without ever looking for a cause.  Even hyperthyroid patients can be Hashimoto patients whose disease just hasn't burned itself out yet.  It is important to watch diet and if it were me, I would also get tested for vitamin deficiencies and supplement if necessary.  I would ask my doc to test for Hashi's antibodies (anti-TPI and TGab).

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    • Posted

      Have been tested for Vitamin D and B12 both are good! Will be having the antibodies test next time I see my Dr. Thanks for your comments! Appreciated!
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    • Posted

      One Hashi's lady posted to this Board that she had that picture of swinging from high to low and back again on prescribed meds and that is what her doctor told her.  In Hashimoto's, the thyroid gland itself is attacked whereas in Graves disease the TSH receptors are attacked.  Perhaps what he means is when the gland itself is attacked, it is destroyed.  I don't know for sure but she did post her doc told her "It hasn't burned itself out yet".

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