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 
Multinodular goitre surgery: Hi all, I have had a... - Thyroid UK
Multinodular goitre surgery
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...
Hello! Thank you for your reply I have been keeping track - here are some of the results I have been able to find (comments at the top are just my notes from articles on what should be optimal). I've probably had some kind of swelling/goitre for 20 years and was diagnosed PCOS in early 20s (which apparently is linked to thyroid) and started getting anxiety then also. I am fully confident my naturopath knows what he's talking about, I cant name here but he's a prominent thyroid specialist so any error must be in how I've interpreted or are explaining it! He may have been interpreting my bloods and answers to his questionnaire with how my symptoms present ie I thought I lean hyper from the bloods but he actually said I am hypothyroid. I am back on supps and my op is in 3 weeks which I feel yeah I have to go through with at this point as its so big now. I am on the Thyroid Care group on FB and this has been incredibly helpful to me and feel more confident I am now on a better and more supported path for whatever comes after the op. I have in the past tested negative for celiac and usually very low on iron.
I have felt my most healthy on paleo and mediterranean type diets where I've gone under 9 stone (but not sure effects on goitre as its still growing!). I fell off the wagon as I relaxed things and now over 11stone and really want to cut gluten and sugar again (my cravings are always so insane almost like an addiction). I try my best to minimise it and follow paleo principles and have lactose free diary mostly but yeah I've realised I'm a bit of a binger and emotional eater. I've always been into natural healing and nutrition but I feel I'm not technically celiac or hashis or auto immune 'officially', so difficult to explain to other people you cant have certain things (ie family events, meals out out etc) or even know myself. I have IBS sometimes and have been advised to follow the Hay food combining diet to help this rather then adopt Keto at the moment. In the past I have been on all sorts of supplements via a nutritionist and have just re started following this naturopathy consult (lugols iodine w selenium, b12, iron & vit c, magnesium, d&k2 and have some zinc & copper from previously). This morning I have requested bloods with T3 and both antibodies as well as a full panel and vitamins from the Dr (they may only do Vit D not sure). I have an iodine urine test kit.
I guess I just wanted to know more about the op and recovery as am getting a lot of anxiety about it, as managed to keep pushing it back. There are quite a few Joe Dispenza videos about people healing their thyroid and I saw this on his film The Source, I think it comes down to ones own belief and believing you can and finding the healing from within (although definitely of the opinion I probably cannot shrink this goitre!!!). I am going to start trying the meditations, and found some other healing frequency meditations on you tube last night.
That chart of your results is not very helpful because it doesn't give the ranges. Results without ranges are meaningless because ranges vary from lab to lab.
However, looking at your TSH - which doesn't need a range - there's absolutely no suggestion of hyperthyroidism. They all look euthyroid. But TSH can be a very poor indicator of thyroid status because so many things can affect it - such as the time of day. Were all your blood draws for these tests done at the same time of day? Early morning and fasting?
I don't suppose your diet would have any sort of effect on your goitre.
Are you lactose intolerant? Gluten intolerant? These free-from diets will only help you if you have a bad reaction to the foods in question.
By the sound of it, you don't eat much meat. That is probably why your iron is always low.
What supplements are you taking? Did you get tested for deficiencies before starting them? Not a good idea to restart them before getting your nutrients tested, whatever they are.
What exactly do you crave? Salt and sugar cravings can suggest adrenal problems.
Just read your replies to SlowDragon. The iodine patch test was debunked a long time ago. So many factors can affect it - temperature, humidity, air pressure, etc.
As for trusting your naturopath, I trusted the doctor that prescribed iodine for me. Now, I curse the day I ever went to see him. The iodine made everything so much worse! And I very much doubt my health would be as bad as it is today if I'd never taken it.
Just testing one antibody once cannot completely rule out Hashi's. There are two Hashi's antibodies as I said above. And the TPOab can be negative but the TgAB positive, showing Hashi's. Also, antibodies fluctuate all the time, so just because they're negative today, doesn't mean they were yesterday, or will be tomorrow. And some Hashi's people never even have high antibodies and are diagnosed by ultrasound.
Aaah sorry I just put this together for me as have so many results everywhere from both Drs and hospital - I will post some more. I will do new ones in the next week. No the blood tests would probably have been all at different times and hmm probably not fasting either. I will try and do this for the next one and have booked a 9am appt. I do not eat meat no. Supps - I usually always take solgar iron and vit c but have had a break. Others just starting again - selenium, vit d/ks, magnesium, b12. I have not been diagnosed gluten or lactose intolerant but have IBS and can get bad reactions to food so kind of just prefer to avoid (unless I want to try full elimination and re-introduction and just haven't done that). I crave carbs, sugar and sweet things mainly. I have far too much dark chocolate 85-100% (if I have that with decaf coffee I can get instant problems!). I just want to snack ALL.THE.TIME. I have only ever had one antibody test for hashi (TPO 11)- I have requested both today and will see...!
FT4: 16.8 pmol/l (Range 11.9 - 21.6) 50.52%
Your FT4 is euthyroid there and the TSH is low in-range. But what time was the blood draw?
About 4ish - I don’t live in London so tend to have to just go after my appointment when I’m down there. The other results are Drs but this format is the hospitals.
originals
originals
FT4: 13.5 pmol/l (Range 9.5 - 22.7) 30.30%
FT4 much too low, TSH also very low.
Yup, it's beginning to look like Central Hypo, where the problem is the pituitary or the hypothalamus rather than the thyroid itself. The thyroid just isn't getting the stimulus it needs to produce adequate thyroid hormone.
Hmm this is all very interesting! How do I find out how to interpret all these results.. not heard of central hypo... is there a way to further test it or read anymore (am googling!)? Thanks! I read your journey and wow what a journey that has been...(I also have had a back issue for 5 years (bulging disks) and now shoulder and neck pain). The Dr thinks I am normal thyroid wise, how will I get them to check for central hypo esp when all my tests are in their normal range and they dont even think I'm hypo. The hospital endocrinologists also say nothing apart from I have to have my goitre out...
Yes, that is a problem. The powers that be, those that decide what to teach in med school, consider thyroid very low priority, so doctors don't get much training in it. And Central Hypo is considered so rare that they don't even bother to teach it! Of course, if they read the posts on here for a few weeks they would find it's not as rare as all that! So, the majority of doctors have never even heard of CH, and definitely wouldn't recognise a case if they saw it. The do as they've been taught: only look at the TSH and if it's anywhere within the range your not hypo, and if it's below range you're hyper! Total rubbish, of course. And, as for the Frees, they don't even know what they are for the most part, but if they're in-range they've got to be ok.
So, we have to start by looking at people without any thyroid problems- euthyroid. They would have a TSH of around 1. Over 2 means your thyroid is struggling. Over 3 is technically hypo. (But in med school they're taught it has to be over 10!)
If your pituitary is functioning correctly, the TSH would rise as thyroid hormone levels drop. Thyroid Stimulating Hormone, it stimulate the thyroid to make more hormone when the pituitary decides there isn't enough.
If it doesn't do that, if it stays low when thyroid hormone levels drop, then you have a problem with either your pituitary, that makes the TSH, or the hypothalamuse that stimulates the pituitary to make TSH. That is how it is supposed to work.
However, as doctors don't know anything about the thyroid hormones themselves, what they do or what level they should be, they just ignore them and concentrate on the TSH. Which is why your doctors don't think you have a thyroid problem - and they certainly wouldn't think of a pituitary/hypothalamus problem! If they even know what they are.
There are, of course, some doctors that are clued up on this - there has to be because we have members on here that have been diagnosed with Central Hypo. But the majority wouldn't have a clue!
So, how does this affect you? Well, thyroid-wise, if you're having a thyroidectomy, you don't even need a hypo diagnosis because you will automatically be given thyroid hormone replacement afterwards. But, there are two problems with not having an CH diagnosis:
a) doctors tend to dose by the TSH. But if you have CH, your TSH is useless and should not be used to dose by. So, you need to make that clear: you want to be dosed by the Free levels, not the TSH!
b) the pituitary doesn't just make TSH, it also makes a lot of other hormones. And if your pituitary is not functioning correctly, then those hormones are likely to be low, too: ATCH (which stimulates the adrenals to make cortisol), Human Growth Hormone (necessary for repairing and regenerating the cells in the body), and many more. And that is usually how CH is diagnosed, by testing those other hormone levels. Your GP can't do that, you need a clued-up endo.
That said, you could ask your GP to do an early morning serum cortisol test. And if that is low, take it from there.
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
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...
Thank you! I regularly get my thyroid levels and vit D tested - and iron as always have anaemia and need to take. I am 48 and over 20 years vegetarian although pescatarian now. It’s a good idea to test before op I will do that. Antibody test once in the past was TPO 11 and hasn’t shown I’m hashimotos (apparently) so have never been diagnosed with that by Dr. I am aware of the stuff around iodine but fully trust my naturopath and I know I can’t name but he’s a prominent thyroid naturopath - testing is done by patch tests on the arm. I have restarted selenium with lugols iodine, b12, my iron again with vit c, vit d, magnesium and sometimes take zinc. I had a break from all supps for a while and just restarted. I do have an iodine urine test kit somewhere I ordered a while ago via another nutritionist I should look into that too.
testing is done by patch tests on the arm
Patch test has been shown to be very unreliable
sciencedirect.com/topics/nu....
The iodine skin patch test is unreliable and should not be used in isolation for determining iodine status
…….the iodine skin patch test fails to take into account the differences in an individual's skin moisture, ambient temperature, and atmospheric pressure, all of which may affect iodine evaporation rate and patch color intensity.
The 24-hour unprovoked urine iodine test is the standard test for checking iodine status.
B12 likely low if vegetarian/pescatarian unless supplementing daily
Ideally you would Test FIRST before starting any supplements
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)
You mention Iodine when you eat fish as I do you should have plenty of it in your system anyway. You can get tested for iodine too.
I had a TT back in 2015 but my thyroid was still working perfectly prior to it. I had a lump which caused my Trachea to move.
I had a top professor surgeon in Poitier for my operation. I have never had a problem with it since.
Multinodular Goitre benign
Newbie needing advice. Total thyroidectomy scheduled for a weeks time. Multinodular goitre.
Goitre
Goitre
