I’m brand new here and looking for help with results and info on nodules.
TSH: 0.665 (0.27-4.2)
Free T3: 4.0 (3.1-6.8)
Free Thyroxine: 18.1 (12-22)
Folate: >45 (>7)
B12: >150 (37.5-188)
Vitamin D: 176 (50-250)
I also have a nodule - had ultrasound and fine needle biopsy. Was told by ultrasound Dr that it doesn’t look sinister and no signs of calcification. Just seen ENT who said biopsy was ‘indeterminate’ and couldn’t tell me any more either way. Wanted me to book in for surgery to remove part/all of gland. I asked about monitoring and a further ultrasound/biopsy - was told no and if I didn’t want the surgery they would discharge me and that would be it. Blood tests obtained privately.
I have many symptoms of hypothyroidism and am trying to figure it all out.
Any help would be so welcome - feel confused and bullied.
Thanks in advance.
Written by
DAB77
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I had Thyroglobulin Antibodies: 18.9 (0-115), Thyroid Peroxidase Antibodies: <9 (0-34) and Ferritin: 86.3 (30-264). Yes, the test was done at 8am. (Not sure of abbreviations yet!)
Been taking some supplements for quite a time - often change. Methylated B vits are permanent. Just started taking some extra D last year but have dropped this off now, along with some other minerals after having levels checked. I had a high copper issue some years ago, and recently I have one slightly raised liver enzyme, which could be caused by high copper - so looking at this again, and wondering if I have a conversion problem with T4 to T3.
Only medication I take currently is esomeprazole after just being diagnosed with stomach ulcers. Waiting for a repeat gastroscopy later this month - no HRT.
I did have a CRP test at hospital but don't have the exact results - it was very low. Nothing else notable on quite a lot of tests recently.
Welcome to the forum! There are many people who post with similar situations - and you’ll get some great input here!
But I just wanted to provide some emotional validation and support….
“Doesn’t look sinister”… “biopsy was ‘indeterminate’” “Wanted me to book in for surgery to remove part/all of gland.”
What part of that paltry, inconclusive and incomplete information warrants surgery as a next step!!!!
😳 🤯
You feel confused and bullied… because you haven’t had anyone explain anything to you and you are being bullied!!!
😠
Even if you ultimately did need to have some of your thyroid removed…. You deserve an explanation, you deserve to understand your body and what’s happening, you deserve to be told what to expect, etc etc
Unfortunately it’s so common for this to happen. And it makes us all very angry .
As you have some dialogue in this post, just remember - YOU are the one who will have to live with the irreversible outcome of any procedure.
It might be just what you need, or it might not. So stand your ground… you are not crazy, you are not being unreasonable. You are just unfortunately coming face to face with the reality that (some) doctors and our healthcare system have a shocking lack of care for patients. We are truly dehumanized and treated like objects to move through an assembly line with the intention of checking boxes and making us go away.
Thanks for your support - I am feeling really rather fragile at the moment.
Can't seem to have a serious conversation with anyone, so just trying to decide what my next steps should be - a further scan/biopsy/where is the best place/who are the best people to see etc. So many questions.
Unfortunately, I know the state of the NHS well - CFS from decades ago - but the thyroid issue is all new and I'm on a steep learning curve at the moment - trying to figure out what's really going on - I asked ENT how many thyroid surgeries they had done - dodged the question with "enough"; I pushed it and was told "20" - doesn't seem like a lot to me!
So you should definitely keyword search thyroidectomy on this forum.
Although the search function on this board is not great, so a little search tip: putting the word “site:” like I have below into your browser will give you more comprehensive results.
Copy/paste this entire line below into your browser:
One thing to remember is that this forum is for people who have some kind of issue and out of fear, worry, desperation etc we all start googling looking for answers and stumble on this forum.
That means…. That there are many very successful thyroidectomies that happen but you won’t read about (m)any of those on here. So for that and any other thyroid problem - realize there is a bias on this forum for this with continuing issues. But there are tons of (lucky) happy hypo people who don’t even give it a second thought.
I have zero experience with thyrodectomies other than reading posts like yours.
What I gather is that it truly is individual, I don’t think there is one “right” answer, and I know that there is no better place than this board to have the conversation and to learn.
What is the same in every single situation… you should not feel rushed or bullied into an irreversible surgery. The doctors literally don’t care how bad you might feel. Don’t forget that, and you’ll do fine. You’ll just realize that you need to educate yourself, take your time, and you are the one who needs to advocate for yourself WITH CONFIDENCE.
The more you know the more confident you will be and all this worry and fear will truly go away.
Thanks for that. I will do some researching on here to learn as much as I can. All I know at the moment is that 'if' I do need surgery, the ENT I saw will NEVER lay a hand on me - that's a certainty.
My diet has been gluten/dairy free for decades, not vegetarian but simple fresh food, ie protein, veg and potatoes. I have not tested but have read about low iodine involvement so that's something to look into/get tested. Would you suggest an iodine test/are they accurate?
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.
Even if result shows low levels. Best to improve with diet rather than supplements
Hi and welcome, I wanted to reply to you as I have experienced this and thought it may help to hear how other people have got on.
I had a large nodule on the right side of my thyroid but it wasn’t causing me any problems and blood tests showed no thyroid issues, no symptoms either, felt really well.
Had an ultrasound via the NHS who said it doesn’t look suspicious but that “I should keep an eye on it” . I knew that private ultrasound companies gave you printouts of your images and thought this would be the best way for me to “keep an eye on it “ myself. I went to a company in London.
The private ultrasound machine gave much much better and clearer images than the nhs did and this operator was very concerned about the nodule, saying I really should have further investigations.
So with these images, my GP made an appointment with a consultant at Addenbrookes Hospital (nhs) where I had a fine needle biopsy which, like yours, came back with an “inconclusive “ result. They recommended I had the right side of my thyroid removed because they couldn’t rule out cancer.
I had the operation about 18 months ago. I was told beforehand that the remaining thyroid usually can produce enough hormones, but occasionally it doesn’t in which case I would need to take a tablet every day to compensate, (making it sound so simple!)
Unfortunately within a couple of weeks of the operation I began having hypothyroid symptoms and blood tests after the op showed that I wasn’t now making enough hormones and that I did need to take Levothyroxine tablets every day forever.
Now that doesn’t sound difficult on the face of it, but in actual fact is quite tricky to get the dosing amount correct for you as an individual.
I was told that the biopsy on the part of the thyroid that was removed showed that it was a “low grade cancer” but it was a type that wouldn’t have spread.
So that’s just me and hopefully you can read the experiences of others too. But of course we are all different and what’s right for one person isn’t necessarily right for you.
Hi, thanks for your reply and best wishes, and telling me what happened to you - I hope you manage to get everything balanced and stay well.
I do have lots of hypothyroid symptoms - never felt quite so ill - been through the Thyroid UK list and I have lots and lots of hypo symptoms, so just trying to get some information on the results and exactly what they mean - head is in a spin at the moment; thanks for telling me your story.
Hi, May I ask you the type of thyroid cancer, was it papillary adenocarcinoma ? Just asking because it was the diagnosis I was given in 1980 when I had 4 large nodules (no scanning then) and most of the thyroid gland was removed, then diagnosis given once lab results came through post operation. I struggled for decades on levothyroxine but managed to find an enlightened endocrinologist who prescribed Liothyronine as a combination therapy. It did help but having problems again now…
Best wishes.
Apologies to DAB77 for highjacking her post and do hope you will get help.
Hi JGBH, Ooohh …. I’m going to have to look through my correspondence and let you know the type that mine was, but I don’t think it was the same as yours.
I too am now taking Liothyronine as well as Levothyroxine.
I will send you a personal message in a day or so, so that we don’t muddy the waters.
I have had a thyroidectomy and will share more, but for now just want to wait for the dimensions. But came on to say I am horrified by the gall of the ENT surgeon.
I was told by the ultrasound scan Dr, unfortunately, I know it sounds stupid, can't remember for certain now, so don't want to say/guess the wrong size. I've felt rotten for months and have been sent on a round of specialists due to various symptoms. Been diagnosed with stomach ulcers and thyroid nodule at the moment. Had various other checks but nothing to explain main symptoms other than hypothyroid. I will get hold of the results and find out exactly what they say as soon as I can.
It is not stupid, your brain is taking so much in at the time.
Size - when they get close to/over 4 cm biopsies can be inconclusive. Why? Because the needle goes in & due to the size can miss cancer. Think of a grape how you could put the needle in and totally miss part of the grape. And of course the nodule can cause breathing/swallowing issues at that size, especially if in a bad position. It is the reason why surgery might be suggested at this size, regardless of a clean biopsy. However, they are able to make some determinations based on the consistency of the nodule as well.
First, up to 60% of people will have a nodule on their thyroid in their lifetime. They are sometimes found accidentally. My friend found hers early (and Hashimoto's) after a skiing accident. It is not uncommon to just come upon it, with scans. So sometimes they mean nothing and simply have to be monitored over time. My endocrinologist told me some are found for the first time after death, because they caused no alarming issues.
Telling you all this because it is not always a difficult outcome. Do not let your head go too far.
I had five or six nodules. And I was content to do biopsies and monitor them over time. And did.
But unfortunately two of the buggers, that were the largest - one 3.2 cm & 3.8 cm - sat at either side of my windpipe/esophagus. They caused both breathing and swallowing issues.
Still I saw a thyroidectomy as a serious choice, because it is. And chose to still monitor.
And then two things happened at the same time, that changed my thoughts on it all -
My endocrinologist did a physical test that she did not explain to me in advance. Try it. She had me raise both arms over my head & then lower my chin to my chest & asked me to talk. One should have no difficulty.
Talk? I could not breathe. My voice, what I could get out, sounded like the devil.
I stupidly stayed there too long and forgot I was in complete control of my own arms and head. 🤩
And around the same time I jumped off my sister's boat in total joy. And despite being a strong swimmer I came very close to drowning within minutes.
I am guessing the front crawl was exactly the same as the test and I cut off my breath. But that was years ago and I also have been diagnosed with severe spinal stenosis since then. So between legs and lungs it was a shocker.
I decided I would meet with a surgeon after all.
She suggested it was time.
But unlike your bleep word doctor she answered questions easily and succinctly. About her surgeries. How long she has been performing them etc. I asked her if she has had a patient that lost their voice (my voice was so bad at that point, it was a fear even though it rarely happens) She did not skip a beat or become defensive or trying to shut me down. She immediately answered yes, one. She then explained the mass was huge, was cancer, and travelled down & was almost like glue on her vocal cords.
I also asked her about ablation, which some choose. It is not performed in Canada due to cost (EDIT: It is now, the first one performed in 2023) she explained. But in her opinion it has the high possibility of not lasting. She said she was just about to perform a thyroidectomy on a patient who went to Hong Kong to have the ablation & it had all grown back over time and bigger.
I knew she was my surgeon on how she did not skip a beat on all questions & just simply answered them.
My surgery was flawless. I received painkillers to fill, after one night in hospital, and took none.
My calcium was high for a bit which indicates possible parathyroid damage or trauma but came right back into normal with no time. And the hardest part of a thyroidectomy for the surgeon - the removal and replacement of the parathyroid went fine.
I thought I would be so vain about the scar. It was and is a non-issue.
Hormone replacement has not gone smoothly. But that was partially due to controlling endocrinologists and a family doctor who acted like I wanted cocaine when I simply wanted to try NDT or liothyronine.
Despite these issues, unlike some, I do not regret my thyroidectomy at all. Never have.
I felt the mass gone instantly. It was such a difference physically. Note I had 'normal' labs before the thyroidectomy. A la not hypothyroid but a ton of symptoms regardless. Yet my thyroid came out 'totally diseased' according to my surgeon. With pathology backing that up when it came in.
So one can have normal labs and a lot could be going on, a la your symptoms.
All the best to you. Take charge and get a second opinion. That man or woman should be open to your questions and concerns, without bullying behaviour.
I do wonder if they saw a potentially troublesome consistency in your nodule to suggest a thyroidectomy, let us know when you get more information about it all.
Thanks for taking the time to let me know your story to give me so much info; really helpful - hope you are keeping well now. Tried the arms above the head thing - everything ok at the moment - will keep checking.
I need to keep on top of it/monitoring etc and find out exactly what the scan/reports say first and take it from there. Just want to have an adult conversation with a doctor - not a "I am the expert, do as I say" specialist. Really angered me and I have zero confidence. Looks like I will need to find a really good ENT who is honest and human.
None of that zero confidence. Throw it to the side. Take the reins, the best you can with the ridiculous ways you are being treated 🌺, and everything will feel better - even with meandering through difficult information.
Oh and very happy to hear with the physical test. That makes me think there was something about the consistency of the nodule they were suspect about - ask that question again when you get back into someone. A la why is a thyroidectomy being suggested over monitoring. Like others have said you more than deserve that answer, it makes me so angry for you that you have not.
I have a set of nodules on both lobes of my thyroid. As of 5th June, on the left they are "buds" which have remained more or less static for six years, on the right they have now joined to a BTA U2 "nodule" 61x41x30mm - more or less taking over the entire lobe. It demonstrates "reassuring features with a spongiform appearance with colloid present"...
The point I make here is the [prat of the] ENT consultant told me in April I didn't have hypothyroidism (my TSH is within range), "lots of women over the age of 40 get swellings on their thyroid", and he advised Gaviscon Advanced as I was suffering from Silent Reflux [boll*x; I insisted on an ultrasound scan].
Of course, when his 5.5 line report came through his wording was very couched for no comebacks, and included the line "...scan did not show any sinister or worrying features. It did show some enlargement of the benign appearing..."
And what use is that? As much use as what you received. So I suggest you do what I did, I rang his secretary and asked nicely but firmly for a copy of the ultrasound senographer's report to him, which as you can see I received. The NHS may argue the toss, but it can't refuse you.
There are various levels of BTA U and for any discussion you need to know what they "think" yours is. Once you know, you can research it so you understand what questions to ask.
My inflating and deflating right lobe, the fatigue and dementia-like symptoms (and the rest) have stabilised since upping my Active B12 from 70 to 140 and the methylated B-complex from occasionally to full whack every day.
I don't have the extended health problems you do, but don't immediately accept the worst scenario. It could be that other out-of-balance issues are exacerbating your thyroid. The first step is to gain a copy of that ultrasound report.
That’s a really good idea from TorcHouse, to ask for a copy of your nhs ultrasound report…. I didn’t think of doing that …. and instead went and paid for a private one because I knew this way I would automatically be given the images.
Although in my case, the nhs and the private company had opposite opinions as to whether further investigation were needed.
I was told that it is often the case that fine needle biopsies come back with an inconclusive result.
As FallingInReverse wrote, there are many successful thyroidectomies and partial thyroidectomies, my friend for instance didn’t need to go onto any tablets after her partial op.
I understand your feelings as to the ENT Consultant that would carry out the operation if you decided to go ahead, I worried about that too. I looked into going private in order to choose my surgeon, but it would have cost £6.000+
I agree that the best course of action is to research and become as well informed as you possibly can before making your decision.
Another possibility is to have a one off private consultation with an ENT consultant of your choosing, when you could take along your ultrasound images and get their opinion, the cost of this is around £250, an option if finances allow.
Yes, I'll start the ball rolling trying to get copies of my reports and see what they say. Trying not to race ahead and get distracted - so I need the reports first and then take it from there. I have thought about another opinion, and it's something I may do. If I do need surgery, I don't know what will happen yet but the ENT I saw will not touch me - doesn't leave me in a good place on what will happen/how I go about things - but that's how things are. Ridiculous that you have no choice.
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