First consultation following total thyroidectomy

[Mm_100]

I have my first consultation with my surgeon tomorrow. Due to the current circumstances this will be a phone call. What should I be asking? My TT was performed due to presumed cancer, so I expect to be given pathology results. Do target bloods depend upon the reason for TT? Should I be asking for referral to endocrine? Is there evidence for me to change my diet at all - I’ve read a lot about reducing gluten, intermittent fasting.

I’m keen not to waste this opportunity to speak to the surgeon so if anyone has any ideas of what I should ask, please let me know!

Many thanks.

[humanbean]

I would definitely suggest that you don't fast. You need to get your thyroid treatment optimised and stabilised before you even consider fasting.

[jimh111]

IF you had cancer TSH will be targetted. It used to be fully suppressed for a long time but now treatment can be more individual. A question to ask (if you did have cancer) is how aggressive the cancer is and to what extent and for how long should your TSH be suppressed.

TSH is kept low so that any possible remnants of the thyroid are not stimulated to grow and spread cancer.

You should already be on levothyroxine, 100 mcg or more. Your future dose will depend on 1. Whether your TSH needs to be suppressed and for how long. 2. How you respond, whether you feel hypo or hyper - it's important to convey how you feel to the doctor.

If you had high levels of thyroid hormone prior to your operation your pituitary secretion of TSH may have been suppressed. If this was the case it may take up to six months for your pituitary to fully recover and during this period TSH will be a poor indicator of your fT3 and fT4 levels. If this was the case they should look at fT4 rather than TSH to get an indicatio of blood hormone levels. In any event your clinical response is at least as important as the blood hormone levels.

First thing is to find out if it was cancer, if so whether TSH needs to be suppressed, to what extent and for how long. These are the questions the surgeon can address.

[jimh111]

Thanks, I'd overlooked the potential need for radio iodine ablation.

[Nanaedake]

Ask:

what further treatment is needed.

what your target TSH level should be. (and ask for it in writing.

Who is responsible for next stage of treatment. Which department?

Also

Get a copy of pathology report.

Keep copies of blood tests.

[Hidden]

Having gone through a similar set of events, if I knew then what I know now I would have refused RAI and demanded to be put straight onto possible NDT therapy after the TT.

The retention of the remnants of my thyroid gland may possibly have gone back into production so that I could have enjoyed a few more years of normal life rather than being stuck onto Levothyroxine and having to suffer a life of hell until I discovered that doctors do NOT tell you the truth about that synthetic source of T4.

Unfortunately that set of events will never happen for me. I consequently had 8 years of hell until I discovered NDT, my overall health was seriously compromised and I had carpal tunnel syndrome, I have gained a serious amount of weight I can't get rid of, I now have recurrent gout and I lost a kidney to cancer by way of a compromised immune system.

My health before my TT for a benign multinodular goitre was excellent.

[Mm_100]

Thanks All - lots of ideas, my list is written!

[mally in reply to Mm_100]

Have you had calcium levels checked since your op? Parathyroid glands are sometimes compromised during surgery so it is good to keep an eye on levels. There are 4 parathyroid glands and in most cases are fine following surgery . I lost one of mine when I had a TT two years ago and it's been a juggling act to get my calcium levels on track. Luckily ok now plus I am one of the lucky ones as thyroxine is working well for me. Good luck with your appintment.

[Mm_100 in reply to mally]

Hi, I forgot to add that I’d also had partial parathyroidectomy, so take sandolcal and alfacalcidol. My surgeon called this afternoon to let me know that the thyroid tumours were malignant and he’s confident that I won’t need any further interventions, just monitoring. This was an incidental finding as it was my parathyroid that was being investigated so in my eyes, I was well pre-op.