I had a full thyoidectomy in August - Graves Disease (was allergic to the Carbimizole) I am taking 125 mg levothyroxine

I have only had 1 blood test since the op (is this normal)? - I still have quite bulgy eyes and don't feel great, now putting on weight!! I thought you should have regular blood tests until you are at the correct levels? Do the eyes get better? So many questions - you will all probably tell me to see my doctor again.

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5 Replies

  • Hi there

    No it's not normal, you should be tested regularly to see if you are optimally treated. Also many thyroidectomy patients and those who have been ill for a long time often have conversion failure (it's do with enzymes) so many of us need T3 added to our T4 and some of us need natural hormones instead (that give you everything your own thryoid would give you). If your doctor is treating you by the TSH you need to get another doctor - we need to see FT3 and FT4 results to see if you are converting the inactive hormone T4 into the active, life giving form T3.

    Your eyes need to be seen by a separate thyroid eye disease specialist - TED is a related but separate illness. YOu should have your TRAB antibodies tested. See here for more information on TED: elaine-moore.com/Articles/G... but you need to be under the care of an eye hosptial and your endo should organise that referral for you.

    Also see here for why thyroid hormone might not be working - you need to get your 'ducks in a row' tpauk.com/main/?page_id=1599 or there is information here: stopthethyroidmadness.com/d...

    Being thyroidless is not the same as just being HYPO as you can get viciously hypo very quickly and we also struggle to balance electrolytes, hydration etc. It's tricky. If these issues are not sorted you can feel shaky and psuedo hyper whilst actually being undermedicated. T4 only treatment usually starts to drag on the adrenals so making sure you support adrenals - in teh first instance with a good B complex, B5, good fats, enough unprocessed gray celtic sea salt, a good multi mineral, plenty of good quality vitamin C and magnesium is important.

    Best to also eat a gluten free / antiinflammatory diet.

    Best wishes


  • WOW! What a response thank you - had no idea about all this - am seeing my doctor on monday

  • You should be under the care of an Endocrinologist, I believe, especially as you have eye problems as well. Email louise.warvill@thyroiduk.org to see if there is an NHS Endo near you, she also has private doctors names.

    Even hypothyroid patients get a blood test every six weeks when first diagnosed till they get to optimum medication, although some doctors stop short of giving you more, due to the TSH result. You should ideally be medicated till you feel well not by the TSH alone.

  • great thank you

  • I had this done last may I go to docs every month medication still not right always adjusting it put on 2st plus and my eyes are still bulgy very self conscious xxx I have just joined I am a bit down about my weight though never thought of gluten free why would that make such a difference, have ready on a few website low carb diets might help also. So glad someone else in same situation obviously not glad your going thru this. Where are you at now ?? Xxx Nikki xxx

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