Multinodular goitre surgery

[elouise7]

Hi all, I have had a multinodular goitre for years and its is now 9cm and affecting me quite a lot with head and neck pain, compressing windpipe etc and growing down - and I'm facing an operation in a couple of weeks as they say I must have it out as so large. I've put this off for years and elected for one side as its worse one side, in the hope I may retain some functioning thyroid. My levels have always been classed as 'normal' however a naturopath has just said its moderate hypothyroid, mild hyper and adrenal fatigue. Feeling terrified of the op and aftermath / recovery as well as lifelong journey from then on trying to balance things or take tablets (having op done in London UCL). Has anyone else gone though this op... ? how did you find surgery, how long was recovery, all via NHS? I have gone through various natural remedies and nutrition work in the past and now started iodine supplementing but it is likely too late at this stage. Has anyone shrunk a huge goitre? I am going to explore Joe Dispenza's book and meditations and try and add some healing to my journey from here on in (I saw of video of someone that had grown their thyroid back after healing). I have no idea if I have an autoimmune condition or hashimotos from all this, as have not been diagnosed with that by Dr - in fact despite years of thyroid tests can only find one T3 result. Other results are in Dr range but lean hyper sometimes. Hashi antibodies test only done once I can find and must have been ok. Its frustrating to be told everything's 'normal' for years when it clearly isnt and I could have been adopting a better autoimmune awareness and diet etc. Struggling with quite bad exhaustion, depression and weight gain over the last few years from kind of emotional trauma too, difficult to know if the op will actually make things any better. Most people say get it out, a few more spiritually led say choose not too and heal yourself...but I feel I have just got to accept the surgery and its suddenly got very real. Thanks

[greygoose]

Hi elouise7, welcome to the forum.

Right, let's get down to the nitty-gritty straight off and say: you cannot heal a sick thyroid. There are various things that affect a thyroid that can be corrected. But if your thyroid is sick, that's it. It cannot regenerate or regrow.

I'm not saying your thyroid is sick, I don't know because we don't have enough information to tell, but it does sound as if you have Hashi's - Autoimmune Thyroiditis. And if you do, it's ultimately going to kill off your thyroid anyway.

To find out what's actually going on, you would need full thyroid testing, and it doesn't sound as if that's been done - or if it has, you don't have the numbers: results and ranges. You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

All done at the same time, because the results have to be interpreted in conjunction with each other, not one here and another there, that won't tell you anything much. All tested at the same time.

Do you ever get print-outs of your results? You should. You're legally entitled to them. You need to know exactly what's been tested and exactly what the results were. Cold, hard facts, not just your doctors biased opinion. And you should keep your own records. Because quite frankly, you cannot trust anyone!

My levels have always been classed as 'normal' however a naturopath has just said its moderate hypothyroid, mild hyper and adrenal fatigu.

When a doctor says results are 'normal', all s/he means is that they fall somewhere within the range. But, given how wide these ranges often are, is it logical to think that you would feel the same if your result was right at the bottom of the range as you would if it were right at the top? No, it isn't. We all have our own personal set-point where the result should be to make us feel well. So, if your result is much higher, or much lower than that set point you're not going to feel well. 'Normal' is not the same as 'optimal'. So, we can ignore their opinion on that score.

Be very interesting to see these results because you cannot have 'moderate hypo' and 'mild hyper' at the same time. That's physically impossible. And that's one of the reasons I would suspect Hashi's. Due to the nature of the disease, it is possible to have one result too high and the other two too low. Or, it could be that you're just a poor converter - but that sounds like Hashi's, too. And that is one of the reasons the results should be interpreted in conjunction with each other by someone who understands them. And I doubt your naturopath does or he wouldn't have said such a silly thing!

Also, I would like to know what was tested to make him think you have adrenal fatigue. You probably do, but why did he say that? And, more importantly, what did he suggest doing about it?

I'm guessing that it was the naturopath that suggested iodine, right? That's the sort of thing naturopaths usually do. But iodine is completely the wrong thing to do. It won't help for two reasons: a) in the beginning it can stimulate the thyroid and make it burn out faster, or b) it is anti-thyroid and will make you more hypo. And excess iodine can cause all sorts of other complications, like thyroid cancer!

And it's not that it's too late for iodine, iodine was never the solution. It is just one of the ingredients of thyroid hormone. And, as I always say, it doesn't matter how many eggs you add to the batter, if your oven is on the blink you ain't going to get a cake! Iodine is not some magic elixir that makes your thyroid work better.

Having said that, there is always the possibility of iodine deficiency. It's true that would cause a goitre because the thyroid enlarges its surface area in order to trap more iodine from the blood. But, to know that, did you get your iodine tested with a non-loading urine test? Unless you did you should not be taking iodine - especially if it turns out you have Hashi's. Iodine and Hashi's just don't go together.

So, to answer your questions - should you have it removed and will that make things better?

And the answers, as always are: it depends...

If the goitre is so large it is impeding swallowing and breathing then, yes, you will feel better if it's removed. You have to swallow and you have to breath, that's absolutely essential.

But, will you feel better in other ways? Well, that depends on the doctor that treats you after surgery, and how much he knows about the thyroid.

Of course, you will be reliant on exogenous thyroid hormone - thyroid hormone replacement - for the rest of your life. And that's where most doctors fall down. They are pretty ignorant about the thyroid and rarely know how to dose thyroid hormone replacement due to their limited education:

In med school they are taught that all they need to do is prescribe levo - T4 - and get the TSH back into range and their job is done.

If only it were that simple. But it isn't.

Relying solely on the TSH to diagnose and dose levo assumes that everyone has a perfectly functioning pituitary (TSH is a pituitary hormone, not a thyroid hormone). They don't.

And to rely on levo (levo-thyroxine) mono-therapy assumes that everyone converts T4 to T3 perfectly. They don't.

So, if you don't fit perfectly into their little pigeon-hole as the perfect hypo patient, life can get rather difficult because they don't know how to think outside that pigeon-hole/box.

So, if you decide to get the op - and it rather sounds like you should - negotiate your future treatment with your doctor BEFORE surgery, and get a treatment plan in black and white.

Of course, you're going to have to do your homework beforehand. So, I would suggest you do a lot of reading on here, and the recommended books and websites, so when it comes down to it, you know what you're talking about.

And before you do that, even, get full thyroid testing and post the results and ranges on here so that we can discuss your results and what they're telling us, so that you understand your future results and not get fobbed-off by ignorant doctors. Does that sound like a plan?

Details of private testing companies:

thyroiduk.org/testing/priva...

[SlowDragon Administrator]

As greygoose has so brilliantly explained

You need to get FULL thyroid and vitamin testing now BEFORE the op

A) you want to know what thyroid levels are now

B) ESSENTIAL to test and maintain GOOD vitamin levels

C) before an operation it’s important to have good B12

Stop iodine supplements and get tested. In U.K. you are very unlikely iodine deficient unless long term vegan

Are you currently taking any vitamin supplements

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

Please add your age on your profile

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

VERY important to test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[SlowDragon Administrator]

If you wanted to test iodine levels

Wait at least 2-3 months after stopping iodine supplements before testing

Genova Diagnostics for iodine test

thyroiduk.org/help-and-supp...

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Cost: £76

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

If you have hypothyroidism/hashimotos and start on Levo, this contains all the iodine you need

Iodine supplements never recommended as can exacerbate hypothyroidism especially autoimmune thyroid disease (hashimoto’s)

thyroidpharmacist.com/artic...

mayoclinic.org/diseases-con...