I don't know what to do anymore

I was on levo for a year as i was diagnosed with hypothyroidism 5yrs ago but now i was told 3yrs that i don't need to take meds anymore as my thyroid has fixed itself even thou i have 3 Nodules but no tests to see what the Nodules are!! Recently i had an MRI scan on my brain and they recently found i had 2 T2 flairs on my brain one at front and one at side can i ask could this be linked to thyroid please.. I cannot afford going private and I've given up on doctors as I've moved surgery 3 times and still getting no where.


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11 Replies

  • Rachel79,

    Who informed you that your thyroid had healed itself and that you no longer require Levothyroxine? Have you had thyroid function tests since you stopped taking Levothyroxine?

    I don't believe there is any connection between T2 flairs and thyroid.

  • It was an endocrinologist that told me to stop taking the meds as it seemed to have fixed itself that was his words!!! last test i had was 2 yrs ago at my GP which was only TSH and that was 2.2 they will not do the others i feel like I'm going round in circles with them!!

  • Rachel79,

    TSH 2.2 doesn't indicate primary hypothyroidism but doesn't exclude secondary hypothyroidism. You can order private TSH, FT4, FT3 and antibody tests via thyroiduk.org.uk/tuk/testin...

  • When i was diagnosed 5yrs ago my TSH was 12.0

  • Rachel79,

    It's possible you had De Quervain's which is a viral thyroiditis which usually resolves.

  • Even though you i have a goiter and 3 nodules and every symptom going and feel like I'm getting worse..

    These was the result I've had

    Feb 2012 TSH-12

    May 2012 tsh- 7

    Nov 2012 Tsh-5,

    April 2013 tsh- 4,

    August 2013 tsh- 4,

    and then bloods in January 2014 and was TSH-2.3

    Was on 50mcg feb 2012 to november 2013

    I keep asking for a retest but they won't do one last i had was 2years ago.

  • Rachel79,

    Thyroid nodules rarely affect thyroid levels. Your TSH was high in 2012 but your last TSH test 2.2 after you stopped taking Levothyroxine is normal.

    I should think your GP would check TSH annually to make sure it hasn't risen.

  • I have asked and will ask again when i go back to see my GP but i don't think my GP is up on thyroid problems as he's going on bloods and not how the person is feeling as i do have every symptom going and getting worse!! But hey if only i can afford to going private as NHS guidelines are useless!!

  • Rachel79,

    If your GP will only test TSH it is worth you ordering a private test to check FT4 and FT3 too. NHS seems to disregard symptoms until thyroid levels are abnormal ie TSH over range or FT4 below range.

  • Very important you have your B12 tested and VitD - also Thyroid anti-bodies - TPO and Tg. Not sure what a T2 flare is - sorry !

  • I'm low on vit d so on meds for that but nothing for thyroid as consultant took me off the i use to be on 50mg levo!! Apparently T2 Flairs are abnormalities on the brain.

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