Thyroid UK
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First endo appointment next week...what should I be asking for?

I have a goitre and nodules seen on a scan. I have a normal tsh and no antibodies (gp only tested one set though). No other tests were done.

I’ve been amazed by all of the fantastic advice I’ve seen on here but it’s made me very aware that thyroid issues are difficult to diagnose due to poor training amongst gps. I’m hoping the fact I’m seeing an endo will help.

I want to go into my appointment well prepared and not be fobbed off. What should I be aiming to get out of the appointent? Will they be able to tell me why I have a goitre and nodules? Will they test t3/4 plus vitamins and minerals? Will they tell me to watch and wait?

Thanks.

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Hello!

I’ve been seeing an endo since a large nodule was discovered in 2016 & now see one frequently due to having my thyroid removed because of said nodule!

I would hope your endo will test your FT3 and FT4 which will give you more info than just the TSH, and I would guess they would also test your iron, iodine and vitamin D levels. If they don’t suggest those tests, I would just ask them to do it! I’ve learnt to be proactive and not assume they will be as thorough as needed. If you can get them to test B12 too even better!

Regarding the nodules, if they are sizeable I would ask if they are planning on doing a fine needle aspiration test to check that the nodules are benign. If they are teeny, I think that may be a reason to just keep an eye on them (if that’s the case, I’d ask how frequently they will scan them & how they will likely develop and impact your thyroid & your health going forward).

I had the needle test but my nodule was large (5cm), but I would want them to do the test if it’s possible, to stop you worrying that there is anything sinister afoot (very unlikely).

And I guess just as a general suggestion, I would suggest reading up a bit so you understand the thyroid well enough to have a good conversation with your endo. I would also take note of all results you get and how you are feeling at the time. I have a horrendous memory so have a spreadsheet of blood results, symptoms and also my medication dose at the time :-)

I hope the appointment goes well!

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Thank you so much, that all really helpful 😊.

The sonograoher doing the scan did comment that the main nodule was large but I don’t have measurements. I also have several smaller ones too. My thyroid was enlarged also.

Do you have hypothyroidism? I’m feeling in limbo at the moment as my initial bloods suggest I don’t have it despite the goitre and nodules. I could tick off many symptoms too but so many of them are very general it’s hard to tell.

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Did you feel that your nodule affected you? I’m convinced that I’m much more breathless than normal but I’m unfit so that might be the problem 😳. I’m no longer comfortable sleeping/lying on my side due to feeling like I’m being strangled. Sleeping on my front is a real relief. I also think that my throat/neck ‘sucks in’ as I take a breath. Can you relate to any of that?

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I also have this feeling with my nodules too and for months had to sleep sitting up in bed with my head back but since being on meds it has improved-i have hashis and graves. This was my concern that something was pressing on my windpipe but the 2nd scan revealed nothing apart from nodules that were not touching my windpipe. I am yet to discuss this with my endo- but i do know if you have hashis that does make your thyroid swell and go up and down-i too get breathless but this as improved as i found out i eas severely iron deficient which causes breathlesness, heart palps etc. Do make sure you get your ferritin checked and all others. x

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I am hypothyroid yes and have Hashimoto so had antibodies present. Before it was diagnosed I just put so many symptoms down to lifestyle to be honest, but now it all makes sense really!

My nodule was wrapped around my windpipe and was making me breathless and also a bit hoarse! I didn’t really notice it though until after it was removed and then could tell the difference :-)

The TSH alone can be misleading so I would definitely be keen to see FT3 & FT4. If you do need medication it can be a struggle to get the dosage right for you, so I would manage your expectations with that a bit. I still haven’t got mine right, but did have a baby 6 months ago just to complicate things!

It’s great you are seeing an endo and not just your GP as they do need to investigate what’s going on! I hope your appointment goes well. Let me know if you have any more questions :-)

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Hi there did they not pick up on your nodule via ultrasounds-noticing it was wrapped around the windpipe? This was one of my concerns as ive just had a 2nd scan done by a very good consultant thyroid sonographer and he showed me on screen that there is nothing touching my windpipe or esphagous. How did they miss yours-interested to know.xx😊

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Hello! I only ever had 1 scan and that’s when they saw it and also noted the location :-) I was diagnosed with hashis & hypothyroidism and had the scan all in the space of a week, so there was no monitoring with scans - just a “yikes it’s massive let’s whip it out” moment lol

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So glad thats out for you-so they picked it up on a ultrasound then, so there is no chance of mine being incorrect-im not very trusting in the medical profession.i have hashis and graves. Bet you felt so much better. X😊

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I’ve just realised it’s sent that message from my old account that I had forgotten the password of! Sorry for the confusion. Bloomin technology lol

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Hope you get a excellent endo😊 i really do as we go to these 1st appointments all geered up for a cure but i think if you adopt the attitude not to expect too much you may feel happier as endos are not known for their patience and sympathetic attitude or great knowledge, and i mean this in the most respect to you.😊

My endo did not do any vitamin and mineral testing as i had to do this via my gp, also i had to do my Antibodies myself aswell. But i agree do not be fobbed off and stand your ground with as much knowledge as possible. Im on my 2nd endo and in hope of finding a really good 3rd one😨.xx best of luck.

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Thanks all. I’m going to go armed with as much info as possible and hope that I don’t have a fight on my hands re: further testing 😬.

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Hi!

You have a goiter and nodules because you have thyroid disease. A healthy thyroid won't have a goiter. That unpleasant strangled feeling you're experiencing is probably from your goiter. Having a goiter and nodules are usually signs of hypothyroidism and/or Hashimoto's. Depending upon your radiology report, having a large nodule is probably worth further investigation, as are having a bunch of small nodules. Everyone is different. I have Hashimoto's and two small nodules that had to be biopsied (negative). Nodules almost always need to be biopsied to make sure you don't have thyroid cancer. How are your nodules described on the radiology report?

You mentioned TSH, but no specifics. What is your TSH level, including the lab range? It is a misconception that hypothyroidism is diagnosed by TSH, because correct assessment isn't based on TSH alone. Incorrect assessment is. The reason being, TSH is not a thyroid hormone. The way your thyroid is assessed is by testing three tests together: Free T3, Free T4, and TSH. T3 and T4 are your actual thyroid hormones. In some countries, doctors are only ordering Free T4 and forget about Free T3. Some people end up ordering their own FT3 test one their own, as I've noticed some people on here have had to do.

"Normal" on TSH, FT3 and FT4 is a cloudy term often used by doctors who don't quite understand thyroid function or disease. You see, "normal" is a huge range. For TSH, actual "good normal" without being on medication is under 2.0. If you're over that, you've getting into "bad normal" territory, meaning your thyroid is getting too slow.

Make a list of your questions and concerns and take it with you to your appointment. Ask how soon you can get Make sure they run a complete thyroid panel, including your both antibodies. FT3, FT4, TSH, and antibodies TPOab and TGab. I'm not sure if your endo will run vitamin tests or not, but if you haven't had these tests, you could always ask for an iron panel, Vitamin D, B12 and folate.

As an aside, I've had 3 scans and I'm about to get my 4th. My first scan was when I was diagnosed. A few days later I had my ultrasound guided biopsy. I had a 6 month follow up, which was one month after I started medication. My next scan was at the one year point after my previous scan. Now several years have gone by. In the last two months I've had my antibodies go sky high again and I've also noticed some of that unpleasant strangulation feeling in my thyroid region. I'll be scheduling my 4th scan asap, like having it next week. I don't like to mess around with my thyroid when something doesn't feel right.

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