Iodine after Total Thyroidectomy

[NadeNud]

Hi

I had a TT in 2011 but a scan last August reveal 2 bits of thyroid tissue around important nerves which the Endo said was consistent with the operation.

How would this affect my iodine intake, or my medication for that matter?

Your advice is very much appreciated.

Nadine

[Clutter]

Nadine, it isn't possible to remove every thyroid cell during thyroidectomy which is why cancer patients have radioactive ablatement to destroy cells in the thyroid bed and any released during surgery.

A little thyroid tissue left to avoid damaging your nerves is unlikely to affect uptake of iodine or thyroid hormone replacement.

[NadeNud in reply to Clutter]

Thanks for the reply.

My thyroid was removed due to the growth of a multi-nodular goitre and no cancer had been found when fluid from the lumps was examined. However, when the thyroid was examined, I had a very small papilliary cancer which the surgeons thought did not require radioactive iodine (0.08ml).

On the last scan in August this year, a calcified nodule was found on one of the remaining pieces of tissue. I will be scanned again next February but should I be concerned and ask for further investigation?

Thanks

[Clutter in reply to NadeNud]

Nadine, RAI is usually done now when the patient is high risk of recurrence which is determined on age (>40/45 I think), size of tumour and type. Small papillary cancer isn't seen as high risk usually.

A calcified nodule has a higher risk of being cancerous but the risk is still small. I think you've every reason to feel concerned but I don't know whether further investigation while you are being monitored and scanned would be helpful. Papillary cancers are very slow growing so monitoring is usually sufficient.

Has anyone discussed whether your TSH should be kept suppressed?

[NadeNud in reply to Clutter]

No, I have come to realise this year how uninformed the general practitioner is about treating the thyroid and the need to be self-aware.

I will talk to the Endo in February about this. However, I feel a little reluctant as when I had a TSH of 0.01 it was accompanied by heart palpitations (last November).

A level of 0.08 last March was when I felt really good as I now realise that I had raised my ferritin levels by been taking iron supplements.

I'm in the process of finding a new GP as I put in an official complaint against a doctor who insisted I cut my dose from 100 to 50 and produced a TSH level of 24, with all the accompanying discomfort. Therefore, the practice won't treat me but I'm relieved to be gone.

Also, the same doctor scanned my thyroid last January and said she thought my thyroid was growing back a unaware that there would be remaining tissue that was consistent with the operation. She didn't detect the lump and made no referral. Would this be considered malpractice in the UK (I'm in Germany, currently)?

[Clutter in reply to NadeNud]

Nadine, I think a GP, not being a thyroid expert, wouldn't be expected to know how much, if any, residual tissue remained after a thyroidectomy but could be expected to refer you to the surgeon who operated or an endocrinologist for investigation if she suspected regrowth as you previously had papillary thyCa. I'm not sure whether this would be considered incompetent but I doubt it would be construed as malpractice.

0.08 may be suppressed enough. My endo wants my TSH suppressed <0.1 and it usually varies between undetectable and 0.01.

[NadeNud in reply to Clutter]

I suppose I can't help wondering why she performed the scan if she didn't know how to interpret her observations - at least in order to refer me.