Surgery or should I wait?

[Nannyhoon]

Hello. I'm new here. I have been diagnosed with a multinodular goitre - frankly, with a 6cm nodule, I look like I swallowed a duck egg that got stuck, and they found more nodules on the other side, all of which seem to be benign. I am euthyroid and show no symptoms of hypo or hyperthyroid or any symptoms of compression. All the doctors are offering me is a total thyroidectomy. As I am not at all good at taking any tablets, this worries me. Would I be justified in waiting until I developed symptoms before even considering surgery?

[PurpleNails Administrator]

Hello & welcome nannyhoon

As you are euthyroid and have no symptoms & compression you would be undergoing major surgery, potential complications associated with surgery and future lifelong hypothyroidism for something that may never cause you further problems. Is the Doctor suggesting surgery is the best option. Have they explained why? It’s a difficult decision for you.

You should have levels monitored. Do you have any current results to share?

I have a solitary 5cm nodule on my left lobe. At the time I had a fine needle biopsy which was fine & I was told my function was “normal”. Although it was actually hyper-functioning but missed by doctors. Levels had been rising for about 7 years. I have not been offered surgery at any stage. So although it might not be right for you it is positive you have it as an option.

[Nannyhoon in reply to PurpleNails]

Thank you for your reply.

I don't have my results - next time I will have to get a copy. The doctor sent me to a surgeon who, predictably, said the only solution was to have a total thyroidectomy as the main cyst is slightly larger than yours at 6cmX 5cm while those on the opposite side are less than 2cm each. No other treatment has been offered.

It sounds like it is not such a silly idea to put off surgery for a while, since the ultrasound and biopsy both suggest it is benign.

Perhaps this is one time I am very lucky to be over 70 as not many people other than doctors and surgeons look at me these days!

[SlowDragon Administrator]

Do you have copies of these thyroid results

Obviously a total thyroidectomy would mean you would become hypothyroid and need levothyroxine prescribed

They are small pills. Difficulty swallowing is often linked to thyroid and might improve

But many people after thyroidectomy will need levothyroxine and T3 prescribed. Getting T3 prescribed is extremely difficult in U.K. , but not impossible

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Nannyhoon in reply to SlowDragon]

Thanks for replying.

I really am going to have to get a copy of my results. At least that way I will have a baseline level to see how my hormones are going.

That is an excellent tip about doing fasting levels. I wonder why that was never suggested by my GP?

[SlowDragon Administrator in reply to Nannyhoon]

Because they have no idea

important what time of day you test TSH ....

researchgate.net/publicatio...

“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Median TSH graph of healthy population

healthunlocked.com/thyroidu...

[Hidden]

Having been through this myself, I can offer some very relevant answers to your dilemma.

I had no choice in the matter, I had already had a partial thyroidectomy 14 years previously and was experiencing at the time (2004) really excellent health, delivering >630 free newspapers ever Wednesday with zero ill effects. The symptoms something was wrong developed over several months until I was unable to deliver even a single newspaper, even to next door!

An operation to remove the multinodular goitre was unavoidable but it was delayed by 6 months due to NHS incompetence. At that stage I was in a dreadful condition.

After the op my previous excellent health returned.............but faded away slowly to a much reduced state when on levothyroxine WHATEVER dosage of that horrible synthetic chemical I took. Now on NDT and fully aware that I will never again feel that well again as 8 years on levothyroxine did so much damage to my body.

The lessons to be learned from this relevant to your present condition are:

If you are not suffering any bad health from your goitre then do not have the operation until you are suffering badly BUT you must bear in mind that the longer you delay an inevitable operation, then the more dangerous and complicated that operation will become.

After the op you will be offered the choice of having Radioactive Iodine (RAI) treatment to ablate all remaining remnants of the thyroid gland that the surgeon was unable to remove. I volunteered for this procedure as the very thought of those remnants being able to work again and reimpose more suffering on me was unacceptable. I realise now that that possibility would have been well worth the risk taking.

You will be offered levothyroxine, the only drug you are currently likely to be diagnosed by the NHS. As I have already said, levothyroxine will likely NOT give you good health and it would be a miracle indeed if any GP or endo were to offer you NDT unless on a private prescription. It is probably correct to say that combined levothyroxine and liothyronine would also not be the answer. The only sensible answer would be NDT and you would have to purchase that online.

[Nannyhoon in reply to Hidden]

Hi Panda321.

Thank you for your reply. It was very helpful and informative. I'm so sorry to hear you are not doing well after your surgery and that the standard hormone replacement has made you feel so ill.

That is one of my concerns - all the hormone replacement I'll be offered is Levothyroxine. To me, it is not logical to remove a thyroid that seems to be working well producing four different hormones and then replacing them with just one, even if that one is the most critical. Who cares if my thyroid is lumpy and bumpy - so is the rest of me these days!