How fast should stuff be happening with Thyroid nodule issues?
January 21, 2021 9:58 AM   Subscribe

Due to pain, pressure, and problems swallowing I asked my doctor to get me an ultra sound on my known nodules... continued inside

There are several and they are rated "TR4" and "TR5" and says highly suspiscious. I know nothing about this - I found them 10 years ago, told my doctor, that scanned and sad no big deal. The results were back 9 days ago and there's no appointments for things like a fine needle aspiration or scans or anything.
I am freaking out as a mom with a kid in elementary school and no family.

Covid seems to be an issue (I tried to call a few places myself to see if I could get an edocrinologist to look at me).

Am I just being to impatient? Is this no big deal. Feels like a big deal. How do I DIY healthcare in Worcester/Boston MA?
posted by beccaj to Health & Fitness (5 answers total) 1 user marked this as a favorite
As a person with Hashimoto's I have a couple of small nodules. When they were first discovered, my doc sent me for a fine needle aspiration immediately. That was negative, and he's just sent me for occasional ultrasounds since them to see if there were any changes. This was pre-Covid of course, but I would push to have someone review the ultrasounds as soon as you can.
posted by ceejaytee at 10:18 AM on January 21, 2021 [1 favorite]

When you spoke to your doctor about getting your ultrasound was there any discussion of the next step?
If not, you could make an appointment with that doctor to review the result of the ultrasound. They can talk to you about what is next and whether a fine needle aspiration, scan, or labs are needed. They can also talk to you about possible treatment options for different scenarios. At the time you make that appointment you can ask about getting lab orders so you can have those done a few days before your appointment to have the results available. You can also ask if you can go ahead and schedule (or have them help you schedule) any of those things like FNA. If you see a family medicine or an internal medicine doctor they will be able to review the ultrasound with you and explain what is next even if they would like you to eventually see an endocrinologist.
In an area like Boston I would expect there to be a good number of endocrinologists but even then it can take a while to get an appointment. They are often in high demand and booked months out.
I am sorry that you got a concerning result from your scan. I hope that you are able to get some answers soon.
posted by arachnidette at 1:01 PM on January 21, 2021

I had this, without the pressure, pain, or difficulty swallowing. It was noticed incidentally by an ENT doc I was seeing for sinus problems, as I had no symptoms at all. I was immediately scheduled for a fine needle aspiration (FNA) to have a pathologist look at the aspirated cells and then referred to an endocrinologist for follow-up. The purpose of FNA is to see if the cells causing the nodules are inflammatory (benign) or cancerous: this will define needed treatment. Are you seeing an endocrinologist or your primary care doctor? In this situation you need a board-certified endocrinologist to coordinate your care.

My FNA results, from several different sites in the various nodules were all inflammatory. I know a couple of women who have had cancerous diagnoses, though, who required surgery or other treatments.

I began thyroid medication to normalize my levels, and the nodules shrunk gradually and now, about 15 years later, are barely discernible on ultrasound. I had yearly ultrasound for a few years, then every other year, and now no ultrasounds. I've reverted back to my primary care doc for my levothyroxine scripts and yearly TSH blood test.
posted by citygirl at 2:22 PM on January 21, 2021 [1 favorite]

Different country, different medical system, different gender … but I'm the former owner of a messed-up thyroid that was causing swallowing issues. I recognize those terms you used from my first scans.

Results here come back from the lab to your GP in about 10 working days. If you're not pinged by your doctor, call them on Monday. I had my last ultrasound under COVID conditions, and it was no different from the many others I've had.

Endocrinologists are booked months out: at least six months here. They're usually the ones who request fine-needle aspirations and TSH bloodwork. (I ended up having two separate fine-needle aspirations. If you're offered the process without an anaesthetic, I'd recommend doing so. The anaesthetic hurt for days. Only downside of no anaesthetic was the faintly gristly feeling of the needle scraping about the nodules, but zero extra pain afterwards). My last endo appointment was under COVID conditions, and done over the phone as a cancellation back in November. The next non-cancellation I was offered was something like May 2021.

I had the right half of my thyroid taken out in 2018, with the other half ugly but declared stable back in November. I'm now on two-yearly ultrasounds. I freaked the fuck out when I started having to see the endocrinologist back in 2016 or so, because of course the worst was going to happen. It was probably five years between me first noticing my neck was a bit lumpy to me actually doing something about it, though. I now have a tiny but barely-visible scar at the base of my neck.

Getting my thyroid dealt with has been nothing but positive for me. Please memail me if you've got any residual worries and we can chat. Thyroid nodules are really common, tend to develop slowly, are easily monitored and (most importantly) routinely dealt with through an outpatient surgery. If Boston's hospital system is anything like Toronto's, one or more hospitals will have a couple of surgeons who perform 3-4 thyroidectomies/hemithyroidectomies a day, every day.
posted by scruss at 2:43 PM on January 21, 2021 [3 favorites]

Similar history, same gender, different country here :)

With nodules visible in ultrasound, there should absolutely be a follow-up by an endicronologist and / or radiologist. The standard procedure would be to get a scintigraphy of your thyroid which will reveal whether the nodules are hot or cold. If they are hot, they will do a fine-needle aspiration to determine if there are any changes in the tissue. Both procedures are painless just a bit uncomfortable. But really nothing to worry about.

If so, doctors will hit a diagnostics gap. There is no way for them to determine whether there is cancer present or not without removing at least part of the thyroid. You might then have the option to remove half, have that examined in the lab and depending on the results having to go back into surgery a few days later. Or you can remove the thyroid as a whole which has its pros and cons.

Thyroid cancer does not get super agressive from one day to the other, so booking an appointment a few weeks out is fine. My doctor wrote me a letter for his colleagues saying that he kindly asks them to slip me into the schedule ahead of time, so I wouldn't have to wait 6 months which she deemed a bit too long. I then had an appointment after 6 or so weeks and due to bad results a surgery 2 weeks after that. It gladly turned out, it wasn't cancer after all. If it had been, my chances of survival as a young woman would have been extremely high.

I recommend you keep at this with the support of your doctor and go the diagnostic steps one after another but without panicking. Advocate for your own health and don't let others turn you down. You have a right to know that everything is fine. If you have any specific questions along the way or would like to here more specific advice on the surgery should you happen to get one, just PM me :)
posted by Fallbala at 12:46 AM on January 22, 2021 [1 favorite]

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