I don't know what to do anymore: I was on levo... - Thyroid UK

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I don't know what to do anymore

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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

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Clutter7 years ago

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.

in reply to Clutter7 years ago

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!!

Clutter in reply to 7 years ago

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...

in reply to Clutter7 years ago

When i was diagnosed 5yrs ago my TSH was 12.0

Clutter in reply to 7 years ago

Rachel79,

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

in reply to Clutter7 years ago

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.

Clutter in reply to 7 years 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.

in reply to Clutter7 years ago

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!!

Clutter in reply to 7 years ago

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.

Marz7 years ago

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

in reply to Marz7 years ago

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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