15 months of treatment and TSH level is still extremely low

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hello everyone.

I am Lujain , 28 year old female.

I am starting this discussion for more consultations regarding my condition from specialized doctors.

Since Nov. 2016 i was diagnosed with hyperthyroidism with TSH>0.005 and FT4 60.24 mpl/l.

So I went to a doctor and he told me it is Grave's decease. I did TSH receptor test and it was high, about 7.60 .

So I started my medication on 11th Dec. 2016 with a dose of 40 mg of Neomercazole. and the dosage got decreased to 5 mg since July 2017.

My FT3&FT4 were back to the normal levels since May 2017.

However, till now tests show my TSH is very low at 0.007. and TSH Receptors is decreasing. it is now 3 point something.

So in my last appointmenf the doctor mentioned that My condition is taking longer that it should that we need to consider taking the Radioiodine pill ad another solution.. but i told him i will keep on the medication for three more months and take my time to think my options.

I really wish to be fully cured not turning my condition into hypothyroidism instead. I dont want to lose my thyroid while science may find the cure.

I really want to get pregnant now while I am allowed to. But i am worried to sick that my baby could be affected by my condition somehow?

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10 Replies

  • Posted

    Have you tried methimazole? I was extremely high to and my neck is swollen. I was not insured for the last 2 years finally got insurance last month. Started taking methimazole last month and within 4 days I started feeling better. I take 15 mg. I don't see a specialist till end of may. I'm worried about them doing surgery for fear of it turning into hypothyroidism to. I hope all goes well for you.

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    • Posted

      Just thought I should mention that Neomercazole is metabolised to Methimazole by the body. Also, lujain89 the fact that your thyroid levels have normalised indicates that you have responded well to the antithyroid drug. In most Graves' disease patients TSH stays suppressed for some time even after the thyroid hormone levels have normalised.   

      Hi carrie4kids, it's great that you are doing better. 

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  • Posted

    I think a fellow member here, Linda, would be able to give you some specific and effective advice on taking Acetyl-L-Carnitine/L-Carnitine for recovering TSH and so avoiding IRA or surgery all through her real experience. Look for her help soon. GL
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  • Posted

    Usually if you want to get pregnant, PTU is the only thyroid blocking drug that is safe for the baby and doctors will put you on this if you tell them you are wanting to get pregnant.  My TSH remained at less than 0.001 for 2 years although my Free T3 and T4 immediately normalized when I was put on 10 mg of Methimazole.  Many Graves patients respond this way.  I did some research and took supplements, starting with Regular L-Carnitine, 3,000 mg, vitamin D, 1,000 IU per day and 200 mg of Magnesium.  When you are running hyperthyroid, you lose a lot of vitamins, minerals and amino acids and replacing them helps with your recovery.  My TSH rose to 0.12 on this and then I lowered the Regular L-Carnitine to 1,000 mg and added Acetyl-L-Carnitine and my TSH normalized at 0.70.  I stopped the Regular L-Carnitine and took the Acetyl alone with my meds and other supplements and this is what caused my TSH to rise.  However, Acetyl is very sensitive and your labs will move very quickly and you need to have more frequent testing and adjustments to your meds and your supplements dosage or you will go very hypo very fast.  Unfortunately, your doc will not know much if anything about the supplements but let him adjust your meds dosage as your levels change and you take care of the supplements dosage adjustments if you try this.
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    • Posted

      Your reply is a great relief. Thank you so much Linda.

      I will start taking the supplements right away.

      and I will do the research myself regarding the Regular and Acetyl L-Carnitine.

      Also, How frequent should I do the tests? is it like weekly?

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    • Posted

      Once every three weeks testing is optimal.  I doubt you could get tested once a week.
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    • Posted

      Alright. Thanks again Linda.

      I am happy for your health improvement and hope you have a healthy thyroid for the rest of your life.

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  • Posted

    You should consult a different endocrinologist. If your TSH is still low there is a possibility of slightly increasing your dose to improve it without hopefully going into the hypo range.
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    • Posted

      Thanks for your help.. In fact I have been visiting two endocrinologists since July 2017 and they were saying the same thing all the time.. Until my last 2 appointments. One of them told me to increase the dose to 10mg and the other asked me to keep on 5mg -I tried to convince him to increase the dose it to 10mg but he insisted on keeping it at 5mg-.

      I got confused whose instructions to follow but I feel more comfortable with the second doctor since he was with me from the very beginning and he knows my condition better.

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    • Posted

      You might suggest going up to 7.5 mg. Even that slight of an increase can have an effect on your thyroid.
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