I was recently diagnosed with 2 thy3f nodules on either side of my thyroid. Thy3f is an indeterminate result (25%malignancy 75% benign). I have no symptoms recently had a baby, breastfeeding, busy mom of 3 on no medication. Has anyone elected watch and wait tactic instead of thyroidectomy? I read absolutely awful stories that people can’t balance their hormones after thyroidectomy.., and can’t be their usual self. I can’t put my head around of being healthy and by my own choice to let them cut my whole organ out just to get the diagnosis. Has anyone chosen the watch and wait path? Thank you in advance
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Indianyellow
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Hi there, yes I had all the blood work done. My hormones are balanced all within normal range. But they said I have high antibodies which is in line with my thyroiditis. But I never had issues with thyroiditis, so thinking it may be because of pregnancy and now breastfeeding… All vitamins they said good levels.
Would you be able to share the results for any of the tests I listed in my post, including ranges?
One of the most important things we learn about our thyroid blood work is that “in range” is NOT to be interpreted as “normal” or “good”…
Although (almost) all doctors will do so.
Ranges are more like shoe sizes… there can be a “normal” range of 35-42…. But if your optimal size is 40…. But are given a 35, you would feel awful. What we aim for is “optimal” not “in range” - and optimal is very individual.
Unfortunately. Very very few doctors understand this basic fact at all.
Uk based/NHS approach to thyroidectomies
I know from this forum (not personal experience) that what you are going through is very typical for the NHS. They are dreadful - on average- at treating anything related to the thyroid. Of course there are exceptions, but one value of this board is shared experience navigating the NHS. I have read many other posts about the NHS bluntly pushing to remove thyroids regardless of the subtleties of the patient situation.
Choices and outcomes for thyroidectomies
All I want to do here is:
1)validate that you should NOT listen to the NHS without doing your own research. This forum is the best place to do that in my opinion.
2) note that, as I have read here, there are an overwhelming number of people who have done great with a thyroidectomies.
3) weigh carefully in consideration stories from those where the thyroidectomies had bad outcomes. Because it will be easier to find those hypo people here who are having bad outcomes (because they came here for help or complications.) vs people who had the surgery and felt great. Fewer of those people generally will be on this forum.
There is a lot more learning you owe yourself before you go through an irreversible surgery.
It might be the best decision. But you can definitely keep posting and more answers until you feel comfortable with what you need to do that’s right for you.
Hi again. They didn’t give me any results in writing. Just said everything was balanced, my thyroid wasn’t toxic (no idea yet what that means) just antibodies were high. I’m not sure how I can get that information. I’ve never been on any thyroid medication.
You have a legal right to your blood work from the NHS. I am not in the uk, but read replies about this almost every day on this site.
You can request them, and I think there’s some kind of digital access?
If you don’t know how to request or get them - definitely search the forum or start a new post with that question in the subject.
I just know that you are legally entitled to them, it’s not always easy to get them, but without them you will be feeling around in the dark on your health decisions.
another thing I’m absolutely asymptomatic. The reason why I noticed that lump on my neck was because then - a year ago - I just had given birth and got to hospital because baby wasn’t well (bronchiolitis)… I was at that heightened state of alert … I don’t know… so I ran to the doctor. I noticed my lump in the mirror when I had an itchy neck.. now I can’t even see that lump as it got smaller.
I asked the surgeon what if in 6 months my nodules will get smaller - he said it won’t change anything. That sounded almost ominous 😞🫣
thank you for this. I’m looking more for those who chose watch and wait with thy3f. I think I’m more inclined to do that. But I’m new to the forum and I have not found those posts
I had an opposite experience, my specialist advised nog to operate when biopsy showed 3f nodule because he did not think if was malignant. I was worried that it was, I had symptoms of thyrotoxicosis, was put on a small dose of Carbimazole but eventually my nodule grew so big that I had problems swallowing. Then, they operated. I think it was Carbimazole that encouraged growth by blocking iodine absorption. If you have no symptoms, I would wait and monitor developments. Thyroid cancers grow slowly. Category 3f is a problematic one and there are calls for a more definite classification. Good luck!
Thank you so much! Are you in UK? I’m in Uk and doctors almost seem overzealous to go ahead with thyroidectomy. I really don’t like it 😭😭 and I’m aware thy3f is not the worst result. Plus they all say that I have thyroiditis which could have been caused by having a baby and breastfeeding. My baby is 16 months.
Thank you. I am in Coventry, UK. I don’t know how to send private messages on this forum . If you are local, could recommend excellent specialist but need to learn to message privately first
I’m in london Uk, being treated at UCL. The private specialist you are talking about - are they an NHS specialist? I guess Coventry is a better option than USA or Europe.
I’ve seen the surgeon today - he said the only thing we recommend to you is the operation. Provided my young age - I’m 44. He said they don’t recommend any further tests - molecular or genetic test - and that I’ve reached the end of the road. 😭
Britpol, the member you are replying to, has a little round picture next to member name. Click on that picture, which will take you to the member profile page.
On that page, you should see a blue button CHAT. Where that button is depends on the device you are using. But it will be at the top of the profile page somewhere.
There are molecular tests which can give a better idea if a nodule/s is benign or not. The two I'm aware of are Affirma afirma.com and ThyroSeq thyroseqinternational.com. Even if these tests show not benign, they give more precise information so you might be more comfortable with waiting.
"Active surveillance" (watch and wait) in the U.S. usually involves rechecking with ultrasound scans at three or six month intervals to look for changes. I agree that most thyroid cancers are slow growing. I was encouraged to wait for surgery; fortunately I didn't as it turned out to be medullary which is more aggressive.
Nodules often increase in size during pregnancy (according to ATA guidelines) but they don't say if they get smaller again. And, just for the record, life can be OK without a thyroid but I have to say I'm glad I'm in the US and don't have to fight to get what I need.
Thank you so much for your reply. You see that makes all the difference- you are in US. I’m in Uk and that’s so disappointing. I found out about the tests you mentioned myself. The doctors never ever mentioned them to me. Also these tests are not available in Uk - I searched everywhere. We found a clinic in Italy though that does ThyroSeq. It costs crazy money… thank you for your reply! X
I had the opposite to you when I had a large growth on my Thyroid. They did a FNA which showed nothing up. I waited, couldn't breathe because the growth had affected my trachea. Nothing. I then moved to France and within a year my thyroid was removed. It did contain a very small cancer which never showed up on the UK FNA result. If you have been pregnant maybe the hormone changes affect the thyroid, I would wait and see if I were you.
I see. I’m sorry to hear you did have cancer, but glad to assume you are well now. How are you feeling since the operation? If I do go for an elective surgery I will have to learn to live without a thyroid.
And you are right to point out that nodules increase in size during pregnancy. Logically I see all indications to wait. I noticed the nodule myself when my baby was 3 months. Since than it shrunk so much that I can’t see it anymore and would have never noticed. My baby is now 16 months. The doctors are driving me mad with uncertainty and presenting to me elective diagnostic thyroidectomy as a brilliant option.
Hi there, saw my surgeon today and asked about molecular testing. The surgeon said they don’t advise it here because it’s very expensive and I might get the same indefinitive /inconclusive result as I already have. Also it is not available in Uk. He said if I watch and wait - nothing will change. But I read somewhere that nodules can shrink etc. I’m really concerned that they completely dismiss any alternative. I wonder why. Thy3f is 25 chance of malignancy, 75% chance of being benign
Hiya, because you are in USA I wanted to ask you if you know how reliable are the molecular tests Afirma,/ThyroSeq? I know that they are not approved by FDA… for some reason. Do you know if that’s a common practice to test nodules with these tests? TIA
Both Afirma and ThyroSeq are covered by Medicare - this is the insurance program for age 65 and above or with covered disabilities. Usually commercial insurance and other insurance programs follow Medicare for younger patients. Both have patient support programs for uninsured patients or if their insurance does not cover them.
The reports I've seen posted by people on the US thyroid cancer boards have been pretty in depth with good explanations and genetic information. They seemed to explain the "why" when there were still uncertainties.
The tests are still fairly "new" (less than ten years) and there are some competitors so they are probably not used as much as they should be. It's more likely if someone is being seen at one of the major thyroid cancer centers or academic cancer centers and has indeterminant results from an FNA.
Ok thank you!I’m in UK, so won’t be covered by any insurance at all. If I bear the cost - wanted to know it’s a trusted option not some cowboy doctors “scammers”. It’s easy to earn on desperation
IMO it might be worth contacting the company to see if assistance is available in the UK. They might be wanting to make inroads as the cost of unnecessary surgery would exceed the cost of testing, so they might have studies going on.
Straight from Google - What is postpartum thyroiditis? Postpartum thyroiditis happens when a woman's thyroid gland becomes inflamed after having a baby. This condition affects a small percentage of pregnant women, or about 3 in 100 to 2 in 25.
I personally would wait until you have stopped breastfeeding as this alters the levels of thyroid hormones too. Hug.
"When all you have is a hammer, everything looks like a nail."
A surgeon will be motivated to suggest surgery so they can maintain proficiency. Surgery is the only thing they might know. It's what they trust. They don't consider the byproducts of their surgical acts. Their investment ends when they suture you back together and peel off their gloves.
You've gotten a lot of good advice to go cautiously toward such an extreme, life-altering step.
That’s what I’m thinking too. In UCL they have a high volume of operations… 350 per year. And if a surgeon doesn’t have a patient to operate he doesn’t have a job. But then they always say “you have 25% it’s cancer”. You choose 😫😭🤯
hi - one more thing, you can search this forum for “thyroidectomy” or “thyroidectomies” and you will find more experiences that will give you more perspectives on the NHS and thyroidectomy decisions/outcomes.
The reply begins with links for how you can get access to your NHS records. Hopefully helpful info. There’s a lot more info in the reply, but I’m only pointing to the patient record links.
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