enlarged thyroid gland growing larger! Will iodine help it stop? Or something else? Avoid soy?

[Sisterthyroid]

Endocrinologist says take it out before it may turn to cancer. 2 needle biopsies were normal. Do not take thyroid meds

[humanbean]

Before considering iodine it would be a good idea to get your level tested. The best test is a non-loading test with iodine measured in 24 hour urine (I think). Patch tests and loading tests are not worth doing for reasons given in these links :

townsendletter.com/Jan2013/...

zrtlab.com/blog/archive/fla...

If your level is low then supplementing would probably be a good idea and might help. But supplementing if iodine levels are already fine or high wouldn't be a good idea.

If you've had 2 needle biopsies that were normal, in your shoes I would refuse to have surgery as long as I possibly could. Life without a thyroid gland is not fun, despite endocrinologists saying (untruthfully) that they can replace the thyroid hormones your thyroid produces with "a little white pill".

(They always seem to mention the size and the colour of the pill - it is as if the sufferers of thyroid disease are toddlers who need to be coaxed. It's very insulting.)

Were the biopsies of nodules or the goitre itself? Do you have nodules? Do you have problems swallowing? Do you choke on food or drink?

Does your endocrinologist have a crystal ball that tells him that a goitre will become cancerous?

Are you hypothyroid? Or hyperthyroid? Are you on any treatment for your thyroid condition? Do you have any blood test results for a thyroid function test? How do you feel?

You should do some research into thyroid cancer. What are the risks of the condition? What are the survival rates? What are the risks of surgery? What are the chances that your goitre could become cancerous?

Please note that in the UK (and you haven't mentioned where you are from) hospital endocrinologists will treat people with thyroid cancer and hyperthyroidism. GPs are considered to be responsible for people who are hypothyroid - and of course having had your thyroid removed makes you hypothyroid immediately. They (the hospital doctors) are dead keen to get rid of the responsibility for patients with thyroid disease and depending on circumstances they usually try to persuade patients to have surgery to remove their thyroids or to agree to take Radioactive Iodine (RAI) to kill off their thyroids.

There are quite a few people on this forum who have had their thyroid removed or killed off. Some of them are perfectly happy with it, some of them had no choice, but many do have regrets and wish they had delayed as long as possible. Or in the case of hyperthyroidism they wish they had stayed on anti-thyroid drugs.

[shaws Administrator in reply to humanbean]

A great response and I do not understand why the medical professionals don't explain to patients how important a thyroid gland is (probably unaware themselves) and that it isn't always a good idea (unless cancer) to remove it. It must scare the patient when a statement of 'it may turn to cancer' to make many of us to have our thyroid gland removed.

[radd]

Sisterthyroid,

Welcome to our forum.

You have already received a great response from humanbean. I just wanted to ask has it been indicated if you are hyper or hypo, and have you had thyroid antibodies tested? If you provide any blood test results including ranges (numbers in brackets), members will comment.

[SlowDragon Administrator]

Please add most recent results and ranges

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for possible hypothyroid (hashimoto’s)

TSI or Trab antibodies tested for possible hyperthyroid (Graves disease)

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s)

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)

When were vitamin D, folate, ferritin and B12 last tested

Is this how you did your tests?

What’s your diet like, are you vegetarian or vegan?

[NIKEGIRL]

Hi. Solid advice offered. What perplexes me is the Endocrinologist statement. I feel it is irresponsible to use the word Cancer. Logic is out the window right now. What is the diagnosis to warrant the word Cancer? This is not aimed maliciously at yourself. I’m just lost for words.

[Hidden]

I had 3 operations on my benign goitres followed by RAI. Knowing what I know now, I realise the doctors has no option but to remove my goitres, but regret that they failed to tell me a great deal about what the problems were and how they may have been caused. They MUST answer any and all questions you ask and therefore you should make a list and make sure you understand everything that they may plan for you.I opted for RAI after the 3rd op as I had felt so ill for so long (in itself a long story) with the multi nodular goitre that I had zero wish for any residual remnants of my thyroid gland to flare up again, I felt I had no choice to make. Perhaps if I had not chosen RAI then the remnants would have started working properly and given me some more years of normal good health - but too late now, destined to remain ill permanently on levothyroxine or buy NDT for myself and live as good a life as I am ever likely to get.

You need to be fully aware of the following extract from the rules that every doctor registered at the GMC must follow if your thyroid gland is removed:

"Consent - patients and doctors making decisions together";

part 2 "making decisions about investigations and treatment, Sharing information and discussing treatment options" states:

"(9) You MUST give patients the information they want or need about:

(l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer."

The emphasis here are the words "MUST" and "you believe".

Nobody informed me that levothyroxine is as good as guaranteed to leave many patients permanently ill, ESPECIALLY if they have no remaining thyroid tissues and that those patients will gain better health if they take NDT which is effectively banned in the NHS.

Due to specific circumstances at the hospital I attended, the endocrinologist and radiologist CERTAINLY knew what condition I would develop. I wish I had known these facts at that time (2005) as I would certainly have reported them to the GMC for failure to obey their rules.

[kvmj]

I have 2 nodules which make me hyperthyroid. One of the nodules increased by 80% last year. My endocrinologist did another needle biopsy and it's benign. I have experienced increasing problems with swallowing and sometimes lose my voice. I was going to have surgery. RAI wasn't an option because I just can't stay 6 feet away from other living creatures (I have a cat), and I think that it's irresponsible to endanger hotel staff. My cat was just diagnosed with hyperthyroidism. Feline RAI is supposed to have a 98% cure rate. I figured we can be radioactive together. I'm looking at his diagnosis as an opportunity.