Having a total thyroidectomy soon, and it seems like the only thing I find online for life after the surgery are horror stories. Does anyone have anything close to a normal life after a total thyroidectomy or should I only prepare for despair?
Thyroid is 9.2cm x 6.4cm
Have multiple nodules, one is 4cm x 2cm x 2.2cm, another one is almost round and 2.2 CM in diameter, so they think it should be removed and I won't miss the pressure. However, the doom and gloom I keep reading about is making me wonder if I just risk it awhile more and put off surgery another year?
Is anyone happier without their thyroid?
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1969Mach
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I'm sorry I'm not able to offer any advice regarding your thyroidectomy. Though once others see your post later on today you will get helpful replies from those that have had this procedure done.
Not sure if you're in the UK? It's 4am here. I have problems with insomnia hence still awake. You'll be welcomed into the forum properly later; just wanted to reassure you that the member's are very knowledgeable and supportive and will welcome you and give you good advice.
Thanks Hedgeree. I'm in Colorado in the great Unstable States of America. Sorry to hear about your insomnia and I know all to well what that's like.
I was browsing another site and someone recommended this site for the best answers on levothyroxine and blood levels, so here I am.
I'll probably lurk more than anything, but I had to ask what I did and understand now the point that folks without issues don't really post on sites like this.
Lurking is good! I did a lot of it before I started posting and asking for advice and I am learning so much through doing so.
It might be an idea to amend your post title to include "thyroidectomy" so that those forum members that are glancing through the posts will see it and you may get more relevant replies doing that.
As others have said including SlowDragon (one of the admin) it will be useful if you post your blood results and ranges for others to advise. That was one of the thing's that was a revelation for me. As I'd always taken thing's for granted not realising that there's a big difference between blood results at the bottom of the range and optimum ones.
No problem! I know you've been lurking awhile but just incase you hadn't noticed if you scroll down past the bottom of your post and the replies (I'm looking at the site using my phone could be different on a laptop etc) you'll see 'related posts' lots to read there!
Folks who have no problems are unlikely to post on forums and online. We are here because we are the percentage for whom conventional standard treatment doesn't work.Wishing you all the best.
Obviously on forums you tend to get people for who there’s ongoing issues
Typically three main categories of people
1) those looking to get diagnosed…..often tricky if TSH is sluggish to respond
2) those left on inadequate dose levothyroxine, who improve once they learn importance of how and when to test, get correct dose levothyroxine, optimal vitamin levels and address food intolerances (most common are gluten and/or dairy)
3) and the approx 20% of patients who need the addition of T3 ……tricky to get prescribed
Test results are normal with the exception of vitamin d, which is in the basement so I take supplements for that.
Main issue is the multiple nods. They say that anything 4cm or over tend to go cancerous. Had a biopsy which was negative, but my Endocrinologist says it's not possible to be certain there isn't cancer in any other part of the thyroid that wasn't biopsied. The left side of my neck pops out quite a bit and ever since I had Covid last October, my thyroid has had a dull ache.
So a thyroidectomy was recommended, and they left the decision to me. I'm mildly optimistic about it, but still struggling to figure out if I should wait just a little longer or get it over with and be able to wear something other than V-neck shirts again.
You just might find the article below (and the full paper which you can access) interesting and/or useful.
The normal range: it is not normal and it is not a range
1. Martin Brunel Whyte
2. Philip Kelly
Abstract
The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.
I probably am a sort of success story having had my thyroid removed 20 years ago and managing very well (I convert well). However getting the levo replacement right has been a challenge. Too much, one sort of problem, too little another!! If you can get hold of NDT the natural thyroid replacement, I probably would give it a go. Here in UK getting a prescription for NDT is almost never possible. Eleswhere it seem to be a bit easier. Very best wishes.
As the others have said people who are getting on ok in life don't tend to post on forums. For all those who are struggling and looking for help on message boards, there are millions who are not. And who are tootling along just fine on Levothyroxine, NDT, T3 or combined therapy.
Actually I am probably one of them, I came here because I was getting adverse side effects, possibly from Levo, possibly something else. They have subsided and I feel pretty good but I hang around because I find it supportive, interesting and informative. It never hurts to get insight into your health condition. And I've certainly picked up lots of knowledge. And if I can help someone else then that's a bonus.
My sister had a total op in her teens which was over 40 years ago, she’s never had any problems since and is very well on Levo. I had a partial op around the same time and although Graves returned and I had RAI in my 40s I also have a normal life.Don’t assume the “horror stories” are the norm !
My best advice would be to be aware and do not for one moment think that your GP will know anything worthwhile about thyroid matters. After your thyroidectomy, you will need to be your own helper but this site will tell you everything you need to know. Ask away and someone will always know the answer. The actual operation is not a problem. I am sure you will heal well and if you use organic vitamin E oil on the scar, it will soon fade.
You will probably feel fine to begin with but ask for a print out of all your blood tests from your GP and post the results here if you wish, so that members can explain the figures. Your GP is unlikely to do that or even know much about them, apart from the result called TSH. He or she will be fixated with this figure, whereas the important results you need are free T4 and FreeT3. It is these that should guide your dose of Levothyroxine.
You may manage well on just Levothyroxine at first, or even forever. Or you may eventually find that the T3 treatment called Liothyronine, will help you when added to your Levothyroxine. Keep posting blood tests here and members will tell you if you could benefit from this additional hormone. I am one who does but I managed several years without it, until I became quite unwell and started to learn and think for myself, instead of relying on my GP.
Don’t worry now. You know where to come for help if you need it. There is such kindness here and you will not be alone.
hello there, I have graves disease and am also on the waiting list for a thyroidectomy.I feel I have given treatment a fair go but I also have thyroid eye disease which complicates things.I agree that people with no problems are unlikely to be on here and I have taken my time coming to this decision due to "horror" stories.I am however glad I have read about all the pitfalls because I have been able to make an informed decision and am prepared for any possible problems.I have learnt so much about the thyroid and my condition and I don't regret coming on here.I know if I have any problems in the future I can come on here for answers and no-one will judge me for my decision.I'm sure we'll both be ok.
A close relative had a TT because of thyroid cancer. She’s still going strong c 25 years on and feels fine on Levothyroxine, so it’s not always a bad outcome, of course the cancer would have killer her left to run riot so there was little option but the op to have it removed. Your case might be quite different and other treatment still possible but it does appear to have similarities. Her’s extended into the chest cavity so they were keen to remove it before it became inoperable. It had many egg sized cancerous nodules. She was completely unaware of any problem. There’s a very neat scar, it’s hardly noticeable.
I had the same question as you, as I've recently been referred for a total thyroidectomy, after a 2CM node had shown signs of malignancy after a needle biopsy.
In visiting this forum, I felt like I'd opened a pandoras box of indifferent endos, complex diagnoses,side effects, and ineffective outcomes.
Happy to hear that there are happy stories, and my sympathies and appreciation to those who are working through the complexities of this.
Well I liken this forum and any other to a review site, except we rarely see 5 star reviews. It's the same as any product review site, some people are bowled over and thrilled by what they've bought, others think it's the worst thing ever and you're sat there wondering if it's the same product they're reviewing.
How can experiences differ so much? What needs to be remembered is anecdotes don't equal data. Yes we hear a lot of negatives on here but that's because people doing well don't post, a bit like you rarely hear people complimenting a company for good service, but plenty complaining about bad.
Thyroid disorders are incredibly common, especially for women and there are millions of people worldwide taking medication. There aren't millions of members here. So I'm guessing many are coping just fine and getting on with life.
When I researched thyroidectomy before mine in 2016 all that popped up for me was sunshine and butterfly types of stories so I thought I got this losing my thyroid won’t be so bad …. Yeah that was not true for me I sadly gained a lot of weight fast and I developed psoriatic arthritis that has been one of the biggest health problem for me.
If your FNB came back no cancer and they still insist you should insist on a second opinion… I had thyroid cancer but I suffered for years before my diagnosis.
I had a total thyroidectomy in May last year due to Cancer. Recovery wasn't too bad at all and in general I feel fine day to day. In my experience, so far all is fine.
You will be fine. I had a huge goitre removed. It took about 6 months to get any volume back to my voice, my nerve to my voice box had to be peeled off my goitre. I was ok for a couple of years, but then started suffering really bad fatigue. After seeing an endocrinologist, I was given a small amount of T3 alongside my Levothyroxine, this made a huge difference. My GP had no experience of dealing with a patient without a thyroid gland, so was happy to refer me to the hospital. I haven’t put on weight and you can barely see my scar.Wishing you all the best.
Hey I'm considering having a thyroidectomy because the autoimmune symptoms from Hashimoto's Disease (Autoimmune of the Thyroid) is really wearing on me. Been tested for a million things, but nothing showed up positive. Joint pain and stiffness, easy muscle/tendon injuries, fatigue, etc...no autoimmune diet, no vitamin, no adjustments in dosing, no adding in of T3 to my T4 regime, nor even T3 mono-therapy has ever made me feel better. Hypothyroidism is only a symptom of my autoimmune that is easily remedied by taking thyroid. Most people (my opinion) assume all their symptoms are from Hypothyroidism, but I'm certain that 99% of the symptoms that bother are from the other autoimmune effects (taking thyroid doesn't help) other than those causing low thyroid levels. Not sure if you have Hashimoto's, but just thought I'd throw my 2 cents in there for anyone with Hashi's who is considering thyroidectomy strictly to see if they feel better. I found this study that gives me some hope:
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