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Status: Jenipeni

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About Me: Female, 33, Australia, member since Dec 2006

PHOTO TAKEN BEFORE TT

Onset of thyroid problems in 1996 ... [More]

TT - 30th November '06.  Benign Obstructive Multinodular Goitre which surgeon said had begun to grow sub-sternally (observed for 10 years ) with autoimmune thyroiditis.  I had been having compression symptoms from my goitre; I couldn't comfortably sleep on my back, when I'd bend down to pick something up I'd get dizzy on the way up, if I lifted my hands above my head for long then my head would start going red (and I'd get dizzy) because the circulation was compromised.

Just the other day I was relaxing and reclining on the couch with my partner's arms around my neck/shoulders and I had a lightbulb moment.  I would not have been comfortable in that position before surgery.  No regrets here!!!

My goitre was 3 to 4 times bigger than it should have been (may it rest in peace - LOL!)
Left Lobe = 7 x 6 x 3.5 cm
Right Lobe = 8 x 3.5 x 3.4 cm
Isthmus = 4 x 3 x 2 cm

I take alternate doses of thyroxine.  4 days of 150mcg and 3 days of 100mcg.  Dr's recommended this pattern as alternating odd and even days one week you get a lower dose and the next week you get a higher dose (because the average is calculated over 7 days; there will be 4 odd days/3 even days week 1 then 3 odd days/4 even days the 2nd week).  Basically this pattern is recommended so you are more accuately able to assess the dose and effect because it provides a consistent average dose from week to week.

***[I am in Australia and we only have 50, 100 and 200mcg strengths of thyroxine available to us...]

It took a long time to find the right dose of thyroxine BUT I have to emphasise the importance of being consistent with your dosing.  Just being consistent with the amount of time between taking my tablets and having breakfast made quite a difference for me.  I do much better with 1 hour (not half an hour) between tablets and food.

Whatever you do - CONSISTENCY is the key!!!

Oh and a POSITIVE attitude really helps - it doesn't always come naturally and sometimes you just have to make a choice.  But you will benefit from it if you choose to "always look on the bright side of life..."

One thing I know made a huge negative impact on my recovery was this;  I was made to wait and hold off starting medication between surgery and waiting for final pathology results (Just in case there was a malignancy - then your body is starved of thyroid hormone before RAI=Radioactive Iodine Treatment).  So for one whole week I had no thyroid (because I had a total thyroidectomy) and no synthetic thyroid hormone coming in.  A blood test at the end of that week revealed my TSH had risen to 15.5 - in just one week!!!  We were all surprised - except I was feeling every bit hypo, which didn't help my recovery at all.  ***IF*** I had to do it again this is the only thing I would change.  I believe that my recovery would have been shorter and smoother if my TSH didn't get the chance to get this high.  We all know it takes anywhere between 6 - 12 weeks for each thyroxine dosage to take FULL effect.  If you need 3 different dosage adjustments like me, that could potentially take up to 9 months to acheive a steady state!!! Eek!!!  It took about 8 weeks before I felt remotely like my old self again and more than 3 months before I really felt good again.  More tweaking to the dose was done even after that to acheive the goal of a TSH around 1.0.
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