TT. Any positive experiences?!

I'm having a TT next week, after 2 years on carbimazole for Graves. Doesn't anyone on here have anything positive to say about TT?! Are the people posting here just a vocal minority with genuinely awful consequences, or are they representative of the wider experience?

[shaws Administrator]

The members on this forum are a minority as millions of people take levothyroxine and are apparently well. On here are those looking for initial information and maybe advice as doctors are not to learned in dysfunctions and they continue suffering disabling symptoms.

There are quite a few who have had TT and they will respond when they read your post.

[Clutter]

PatriciaPatricia,

There have been very few negative posts about the thyroidectomy surgery. Most negativity is about how members feel after surgery and that is more likely to be because they are not doing well on Levothyroxine either because it doesn't suit or because they are under medicated.

My sister had RAI 5 years ago because she had relapsed Graves hyperthyroidism. She's been fine on Levothyroxine apart from a blip last year when she became under medicated but then became over medicated when dose was increased. Her GP is now monitoring thyroid levels biannually instead of annually.

I had a hemilobectomy to remove a large nodule compressing my windpipe. It was much easier to breathe and swallow after the surgery but the tumour was malignant so I had completion thyroidectomy 3 months later. I was prescribed Liothyronine (T3) for 3 months until I had RAI to ablate remaining thyroid cells. After I was switched to Levothyroxine I became very unwell but have been fine since T3 was added to Levothyroxine.

[Hennerton]

I had TT in 2006, following a year of Graves that would not settle on Carbimazole. I was absolutely fine until about 2010 when I began to have strange illnesses that I had never suffered from previously. One long spell with a urinary tract infection made me begin to ask questions and buy books. I discovered the existence of Liothyronine, (T3) and saw an endocrinologist privately to get a prescription. My GP now supplies this and I pray it will continue, as combined with Levothyroxine, it has improved my health.

My iron is usually low, even now and it helps to keep on top of vitamins and minerals and have a very nutritious diet.

My advice would be to ask your endocrinologist or consultant doing the TT, to confirm in writing that you will be prescribed T3 if you find you need it. The thyroid produces about 20% so you are missing that much immediately. You need good iron levels and selenium to help conversion of Levothyroxine to Liothyronine (T4 to T3). They will argue with you but read all you can on here and stand your ground. By the way the operation is simple. Good luck!

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You will see that each individual has varying comments to make about a TT. I agree that there is little to worry about with the operation itself and that the main problem you will have is a drain tube in your neck for a few days. Makes going to the toilet rather awkward and you can forget having a shower!

However, the operation if far from being a simple for the surgeon. My FIRST TT operation proves the case, it was so difficult for the surgeon that he took a break as soon as he saw the mess inside my neck to discuss with another surgeon at a different hospital. he consequently sewed me back together again and sent me home, still with my life-threatening multonodular goitre in my neck. I took another EIGHT months of sheer hell until before another (successful) operation took place.

My faith in surgons is 100%, my faith in endocrinologists scarcely registers on the scale.

Some people, apparently, will do well on leothyroxine. Others will need to add some Ts. I take NDT and have refused to move to a combined T3/T4 dosage as, having seen the improvements that NDT made to how I feel, I have no desire to take levo again in whatever form. I only discovered it was possible to get a combination long after I started on NDT.

On a scale of 1-10, 10 being the worst, I would rate my experience of kidney cancer in 2011 as being 1, whereas I would rate my thyroid experiences, from their start in 1988 till now, as being right at the top of the scale, 10.