MRI all clear ‘normal’

[Regenallotment]

Had a classic ‘normal’ from the ENT specialist today.

MRI scan of nodules and adenomas in thyroid and close to parathyroid.

ENT: Scan is normal, PTH is normal. Tells me what parathyroids are and what they do.

Me: yeah I’ve watched the videos of the clinic in Florida, they say you can’t tell if they are malignant from a scan, should my calcium be tested? Does it say what is inside the nodules/adenomas we were concerned about from the Ultrasound?

ENT: yes it’s normal

Me: my calcium has never been tested, the ultrasound said adenomas and nodules and masses.

ENT: (squinting at records) no doesn’t look like Calcium has been tested. Your TSH has though, that’s normal.

Me: I’m hypothyroid I test TSH, T4 and T3 every 8 weeks

ENT: I don’t see how, the labs won’t test T3.

Me: explains private testing via NHS labs. Ask about calcium again.

ENT: if you are worried I can book you in for another MRI scan in 6 months to monitor

Me: you said everything was normal

ENT: it is

Me: isn’t that a waste of resources?

ENT: not if it reassures you

Me: let’s leave it there, is there anything on the report about the nodules and what’s in them?

ENT: Squinting again, says you have signs of thyroiditis,

me: Yes I have Hashimoto’s had it all my life diagnosed in 2021.

ENT: Are you hyper?

Me: not anymore that was in my teens and 20s, hypo now.

ENT: ah that explains it

Me: explains what?

ENT: why the report says your thyroid is so small.

Me: Small - as in atrophied?

ENT: Yes well like I said nothing to worry about, everything as we’d expect it, I’ll write this up for your GP. Sorry I know it’s not ideal as your symptoms of pain, swelling and soreness can’t be explained, but hopefully your T4 treatment will help.

Me: what’s with this clavicle pit swelling? It’s grown in the last few weeks.

ENT: yes totally normal, just fatty tissue, shows black patches on MRI, a bit like a lipoma,

Me: But my weight is coming down and these are growing,

ENT: Just ignore it, I know it can be uncomfortable and give you a ‘full’ and tender feeling but we don’t do anything about it.

Hubby came in with, it seems to stop the hypochondriac malingerer vibes. He said the guy was slightly more professional but sounded rather like the doc off The Simpsons.

Have requested the report from the hospital as he wasn’t able to print.

Watching and waiting I guess. 🤷🏽‍♀️

Trying really hard not to feel like I’ve wasted 000’s of precious NHS resources but also feel like I don’t trust what I’ve been told today. 😟

Any thoughts?

[PurpleNails Administrator]

The report might actually tell you more. 

Talk about dodging the calcium test & he didn’t seem to have a clue about your history.

Why “like” lipoma? could it be a lipoma? What he said about doing nothing despite it being uncomfortable is what I was told about lipoma on near lower rib.  I was told it wasn’t near anything important, no one will investigate. 

 You do realise the conversation about offering a scan to reassure you & you worrying about resources will likely be condensed into “ patient refuses repeat scan”

[Regenallotment in reply to PurpleNails]

 You do realise the conversation about offering a scan to reassure you & you worrying about resources will likely be condensed into “ patient refuses repeat scan”

Yes I thought about that on the way out, I’ll check his letter carefully when it comes and discuss with GP.

My husband has lots of lipomas, mine is different to those, looks like chubbiness under the skin. I’m thinking mucin maybe?

Thanks for getting back to me, yes hopefully the report is more helpful.

🌱

[SlowDragon Administrator]

so ….it’s Ord’s thyroiditis then

Wonder if ENT specialist knew that

[Hidden]

Me: you said everything was normal

ENT: it is

Me: isn’t that a waste of resources?

ENT: not if it reassures you

You won't find me saying this very often... If ever... But I 100% agree with the endo here.

Stress and worry about our ill health will no doubt cause more ill health further down the line.

It is not your job to worry about wasting resources; your need for another scan is valid. The job of the medic is to reassure you not themselves.

Please don't refuse care you think you need or want. I know it's for a good reason but it's for the politicians for NHS bosses to worry about wasting resources; that's what they get paid £££ for!

(If you were going to A&E for a cold or asking for paracetamol on prescription that might be a different story. 😂)

♥️🌱

[Regenallotment in reply to Hidden]

That’s a good way of looking at it, I’ll ring the department and say yes please to a follow up. Thank you for pointing this out, much appreciated. 🌱

[Batty1]

I saw ENT for years because of thyroid nodules eventually my symptoms (choking, panic attacks) and final straw eye popped out of socket I was sent to Endocrinologist office by my EYE DOCTOR this is were I discovered that I had thyroid cancer and ENT should have sent me to the Endocrinologist department a long time ago…. None of my blood tests over the years revealed anything being wrong with my thyroid…. Your ENT sounds like my ENT dangerous…agh!

[Regenallotment in reply to Batty1]

thank you, I just downloaded the pdf of the report which suggests further investigation of parathyroid so I will pursue via GP. Caught him on an off day perhaps 🤔

[Poniesrfun in reply to Batty1]

Thyroid cancer itself usually doesn’t affect thyroid levels unless you also have Hashemitos or Graves. One reason it is so often found “incidentally”.

[Batty1 in reply to Poniesrfun]

With thyroid cancer you should have elevated Thyroglobulin levels but I never did my cancer was discovered after my ump-tenth FNB and I probably did have Hashimoto’s (undiagnosed) which might explain the years of yo-yoing between hyper to hypo and not understanding what was happening to me and doctors not offering any insight.

[Poniesrfun in reply to Batty1]

But it's rare here that anyone bothers to look at thyroglobulin until after you're diagnosed with thyroid cancer. I was 73 when dx with thyroid cancer "incidentally" and had never had any kind of a thyroid test in my life before then.

[Batty1 in reply to Poniesrfun]

What made them decide to look for thyroid cancer ?

[Regenallotment in reply to Batty1]

they weren’t looking for thyroid cancer specifically, GP referred to ENT to rule out after ultrasound picked up adenoma and nodules. Ultrasound was because I was having sore throat, difficulty swallowing tablets and soreness in my neck, swelling in my clavicle pits.

[Batty1 in reply to Regenallotment]

clavicle pits?

[Regenallotment in reply to Batty1]

yup, the dip behind the collar bone, in front of the shoulder, mine is filled out (more on my left than right). Didn’t used to be, has come in last 12 weeks and is growing Did you want a pic? Have a pic 🤣 I bet you didn’t 🫣🤣

Photo of swelling in clavicle pits

[PurpleNails Administrator in reply to Regenallotment]

have you ever had your cortisol levels checked ?

[Regenallotment in reply to PurpleNails]

Thanks for your message, nope… my aim was to get thyroid and vits optimal first, I’m 4 weeks into 125mcg T4, it’s nearly 2 years and counting since dx and at least 35 years of autoimmune symptoms, hyper without knowing it age 14-28, fluctuating with motherhood age 28-40, mostly hypo since age 40, now 49. I am definitely improving, rarely have the exhaustion symptoms since 100mcg 12 weeks ago (unless it’s a bug) but I am good at tired and wired, Have recently learned to pace myself as tired and wired can lead to sofa glue 😬. A post by  posthinking01 also rang true this week though, I get terrible leg aches after yoga. Chronic ankle injury stopped me running in 2016. Podiatrist and physio are stumped. So you are likely onto something, I’ll have to read up on these saliva tests and book in after next thyroid and vits panel. What weee you thinking? Was it linked to the swelling? 🌱

[PurpleNails Administrator in reply to Regenallotment]

Fat around neck specially above collarbone (Supraclavicular) “fat pads” & / or buffalo hump is often mentioned with cortisol issues.  - but I don’t know if it’s likely to be low or high.  Thyroid issues can be implicated.  But if you have an existing thyroid issue you could have cortisol issues which typical cause hyper for example. It’s difficult to diagnose.

 Do you have weight loss / gain,skin issues - easily bruised, stretch marks, blood pressure issues, menstrual issues, swollen ankles, low mood, thirst? 

[Regenallotment in reply to PurpleNails]

Do you have weight loss/gain - very slight but consistent with trying to eat better and recent 125mcg. Talking 1 kg loss over 3 weeks

,skin issues - easily bruised - yes like a peach

, stretch marks, - nope none recently, but at 30 I turned tiger striped in second pregnancy that was followed by hyper post partum thyroiditis haven’t had it since but am a bit ocd about weight gain so haven’t changed size much over last 20 years.

blood pressure issues - usually quite low, medics always think I’m an athlete

menstrual issues- fibroids & super heavy but over quick.

swollen ankles - never

low mood - lifted completely on 125 mcg but generally historically yes

thirst - normal I think, but have definitely had phases of being super thirsty in the last few months, more on 75mcg than now. I’m a sixth form teacher so permanent mug in hand. Frequent urination follows 🫣

[Batty1 in reply to Regenallotment]

lol… I have possible spread into the front of my clavicle near bottom of my neck (closest to collar bone). I go on the 25th for another US and I just did blood test today.

[Regenallotment in reply to Batty1]

spread of thyroid cancer? Wow. Thanks for sharing I hope your investigations come back with the info needed. Sending virtual hugs 🤗

[Poniesrfun in reply to Batty1]

A nodule showed up when I was having a PET scan while being treated for lung cancer. For some it’s when they have an X-ray for something else, or they or their doc palpates their neck and feels a lump or someone is having swallowing problems. But unless you’re already being followed by an endo for Hashemite’s or Graves it’s rare that someone orders a thyroglobulin level.

[arTistapple]

I suppose we will be labelled conspiracy theorists for our thinking. That conversation reminds me of “Yes Prime Minister”.

[Regenallotment in reply to arTistapple]

it was very much in that vein 🤣

[Poniesrfun]

”Me: my calcium has never been tested, the ultrasound said adenomas and nodules and masses.”.

I would have expected the next step would have been FNA biopsies not MRI. There are protocols for evaluating ultrasound results and assigning risk and need for FNA.

Patti in AZ

[Poniesrfun in reply to Poniesrfun]

acr.org/Clinical-Resources/...

[Regenallotment in reply to Poniesrfun]

yep I agree, for some reason they want to scan and scan, the ultrasound report said FNA would be helpful. I’ll discuss with the GP. Thanks for the link and info 🌱