Worried sick: Hello everyone. I had an mri of my... - Thyroid UK

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Worried sick

DaniDC profile image
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Hello everyone. I had an mri of my head and neck which had an incidental finding of a 18mm cyst on left love of thyroid. I have been back and forth to docs regarding extreme fatigue, muscle aches, dry skin and eyes, bad hair loss, weight gain of over 3.5st in 2 years. I have had a thyroid function test which was apparently normal- apologies I have no facts or figures. Had an ultrasound of thyroid last week and could tell by his manner he was concerned- gp called 2 days later saying I am being treated on the 2week scheme as possible chance of cancer. I have fine needle aspiration next week the 8th May and I am terrified it is cancer. Not slept at all for worry and wondered if anyone had a similar experience or if it could something other than the dreaded C word.

Thanks in advance

Danielle x

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DaniDC
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Greekchick profile image
Greekchick

Dear Danielle,

First, I am so sorry you are having such a bad time right now. The thought of cancer is very overwhelming.

Please know that 98% of all nodules are benign. Good that your doctor is being so proactive - that’s positive. Not all doctors move so fast. Also, there are other causes for your symptoms, like hypothyroidism, and there are things that can be done for that to relieve your discomfort.

The fine needle biopsy is somewhat uncomfortable, but over quickly, and it will give them information that will be helpful. I had a toxic multinodular goiter, meaning I had many nodules, for 25 years. I was biopsied regularly and none were ever cancer. I only just had my thyroid removed after that long time for for the nodules and Graves’ disease about 10’weeks ago.

I know it is easier said than done, but try not to worry yet. Keep us posted and there are many good people on this forum with lots of information that can help you along the way. If you can get your blood work results, which you are legally entitled to, it will help a lot.

Good luck and sending you positive thoughts! Hang in there - thinking of you. 🤗

DaniDC profile image
DaniDC in reply to Greekchick

Thank you so much for your quick response and reassurance. I will try and get a print out of my blood results and post once I have those. I had an mri in 2011 and the nodule was present then- my last mri done Dec 2018 the report says that it looks smaller now than in 2011 and looks cystic in nature. I am driving myself mad with worry by googling it and when I’m rational I know it could be so many other things but then can’t help thinking it’s cancer and spread everywhere and I have no hope. Am keeping it together as I have 2 young children- this is a great release and I do appreciate any comments or suggestions X

Greekchick profile image
Greekchick in reply to DaniDC

Something else to keep in mind : most nodules, even if cancer, stay within the thyroid - once it is removed, in the majority of cases, most thyroid cancer also goes. At this point, too much Googling will only make you more anxious - take it from one who knows - me - I’m still doing it post surgery and it makes me anxious. I am not telling you to be uninformed - and do follow Slow Dragon’s links as they are very reliable information - but try to focus on over things - until you have a reason to worry. All the best.

DaniDC profile image
DaniDC in reply to Greekchick

Thanks so much. You have definitely calmed me down. I hope you are doing well on your journey and healing well post operatively. It’s nice to hear people who have had similar experiences- although I am sorry you have to go through it too x

Greekchick profile image
Greekchick in reply to DaniDC

I’m so glad you feel a bit better now and that I could help. I am doing OK - a little better every day - it is a slow process but there is hope at the end! Thank you for your kind thoughts and I am keeping you in mine.

SlowDragon profile image
SlowDragonAdministrator

Do you have copies of your blood test results you can add?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ask GP to test thyroid antibodies and vitamins if not been done

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

DaniDC profile image
DaniDC in reply to SlowDragon

Thanks so much for your reply. I am going to get a print out of bloods today so will post later. I will also check out the helpful links you have sent.

Thank you again x

SlowDragon profile image
SlowDragonAdministrator in reply to DaniDC

Anxiety is extremely common symptom of being both hypothyroid or hyperthyroid

First step is to get copies of blood test results and obviously see GP to discuss ultrasound results

DaniDC profile image
DaniDC in reply to SlowDragon

Just picked up results from doctors which have made me even more anxious. Report says:

In the right love appears a large, well defined, cystic thyroid nodule with multiple thick separations and solid mural nodule which is showing intensive internal vascularity. Appearances in right thyroid nodule consistent with U3 which requires further investigation.

Serum T4 level is 16.6

Tsh level is 1.28

Fsh level is 3.7

B12 is 175ng

Ferritin is 60.09

SlowDragon profile image
SlowDragonAdministrator in reply to DaniDC

Can you add the ranges on these results (figures in brackets after each result)

You also need Folate and vitamin D tested - ask GP to do so

Ask GP to both TPO and TG thyroid antibodies As well

Ideally you would test TSH, FT4 and FT3....but NHS refuses to test FT3 if FT4 and TSH are within range

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

DaniDC profile image
DaniDC in reply to SlowDragon

Would there be a way I can attach a pic of the results? May be easier

SlowDragon profile image
SlowDragonAdministrator in reply to DaniDC

Only to a new post....or you can edit original post and add picture....can't add a picture in a reply

DaniDC profile image
DaniDC in reply to SlowDragon

I started a new post but with same title! Thank you! Still finding my way around the site! X

Greekchick profile image
Greekchick

Please wait for your biopsy before panicking - until they do the biopsy they cannot confirm what it is. Appearance alone without ultrasound biopsy can’t tell you what it is. Thyroid nodules vary in shape and size. One of mine doubled in size within a month before my surgery - and until the biopsy comes back you don’t know. Put the report away for now until you have more information. The thought of cancer is scary - I know from experience — but SlowDragon is right - anxiety is present in both hypo and hyperthyroidism. Sending hugs from Canada 🤗

DaniDC profile image
DaniDC in reply to Greekchick

Thank you- I think I will follow your advice as I am driving myself crazy with worry. I will keep you posted once I have the results of the biopsy- hopefully they don’t take too long. Thanks again for your kind words and sending hugs back to you ☺️

Nanaedake profile image
Nanaedake in reply to DaniDC

Please try not to worry but get the facts and stick to facts. Thyroid disease and conditions are very treatable and that's including thyroid cancer. Some nodules that were previously termed cancer have been downgraded to a lesser diagnosis. It's very common for people to have nodules and not even know it.

Googling won't help because you need the facts for your particular condition as there are so many variables and everyone is different. It's good that your doctor is being speedy and you'll get some better information soon.

DaniDC profile image
DaniDC in reply to Nanaedake

Thank you for your reply. I am going to stay off of google now! It’s not helping me and sending me into crazy mess!! Will wait and see the biopsy results and go from there. Thanks for the reassurance I appreciate it.

PurpleRain91 profile image
PurpleRain91

Hi there,

I feel your worry, I have FNA tomorrow also for a U3 nodule. Very nervous and have been very sick with worry the last couple of months trying to get to the bottom of things. I have my fingers crossed for you that it comes back benign. Please let us know the results when you get them. Sending you the best of luck.

DaniDC profile image
DaniDC in reply to PurpleRain91

Hey PurpleRain91 really sorry you are going through the same thing. I wish you all the luck and hope yours is benign too. I’m very nervous but just want it done and over with now. I will post any updates on here. Try and stay calm as hard as it is x

PurpleRain91 profile image
PurpleRain91 in reply to DaniDC

Exactly the same, the wait is awful isn’t it? I have anxiety and was diagnosed with severe OCD a few years back and this has sent everything into overdrive. I cried a lot before I saw my ENT specialist regarding the nodules but he was speaking very positively and reassuringly and it helped. That being said I feel mentally exhausted with it all, I was told U3, is the better of the statistics though U4 and U5 are the really concerning ones, but they do need to just check as it is a hard nodule. Doesn’t matter how much you try to rationalise it though ey? That possibility just creeps back in into your brain 🤯😞 I came to this forum when I was found to have goitre, so I’ve been logging the journey here and it has helped to talk with others going through a similar situation. Ever want to talk feel free to drop me a message. I wrote an update on here this morning and scrolled through to find your post in relation to mine. I’ll be sure to keep an eye out to see how you do with it all. 👍🏼

DaniDC profile image
DaniDC in reply to PurpleRain91

I make it worse by googling stuff and getting myself in a state! I see things and I’m convinced it’s the worse case scenario- human nature I guess. Some of the things I have read though have made me feel more positive. I would happily just have the whole thyroid out so there is no chance or risk of cancer. I hope we don’t have to wait long for results of the FNA x

PurpleRain91 profile image
PurpleRain91 in reply to DaniDC

Oh god yes, I've done that too...and been told off by my doctors in the process! lol I read about lymph nodes and stuff and kept feeling my neck for little pea sized lumps and then convinced myself stuff must be going on there too.....my god ive for sure scared myself a few times now! Self diagnosis is never the answer though, but I get why we do it....we wait and wonder and then when the internet is there you think it may give you reassuring signs and answers to no avail....then you try and stop but the waiting gets harder and so you think to yourself 'maybe if I type this in..' its just a vicious circle. I've been trying to stay away from doctor google the last few weeks. The exception being the forum, at least here I can get feedback and knowledge rather than scary stories and false facts. My appointment is at 9 am tomorrow.....so glad its morning...I wont be sleeping tonight...I mean ill try to but...my brain can be such a bully in times like these!

DaniDC profile image
DaniDC in reply to PurpleRain91

That’s so true!! The temptation to do a little google search and thinking I’ll just change the search in the hope of something positive to hang onto!! My appointment is at 9am too- thank god I couldn’t cope waiting around all day! Let’s get there and get this done- we got this 💪🏻 X

PurpleRain91 profile image
PurpleRain91 in reply to DaniDC

Wow how coincidental! ill be think of you and sending positive vibes! ill message you tomorrow afternoon let you know how mine went! we can swap experiences! take care! x 💪🏻

ling profile image
ling

Hi Dani, how are you doing?

Best wishes.

DaniDC profile image
DaniDC in reply to ling

Hi Ling- so sorry for such a late reply. So after biopsy they said results were Thy4 and after ultrasound nodule was U5 and they had a strong suspicion of either medullary carcinoma or anoplastic carcinoma. They removed half of my thyroid and I had to wait 4 weeks for a follow up. They told me in my follow up that when they examined the half of my thyroid they removed there was no sign of cancer. Phew! I am so relieved but have lived through the trauma of thinking it was a really bad prognosis and worrying endlessly that I still think I am traumatised from it all. I guess until they remove the part of the thyroid they cannot 100% tell you either way

ling profile image
ling in reply to DaniDC

My God! Who wouldn't be??

So what was the explanation for the Thy4 and U5? Even a biopsy is not accurate?!

Still great news and God bless you well

: )

Does the other half of the thyroid have to be monitored?

Best wishes.

DaniDC profile image
DaniDC in reply to ling

They said that the batch of cells they took was acting strangely!! Which gave them “the suspicion” of cancer! I think basically they over react so as not to miss anything serious- all the while it nearly kills you with worry! But yes like you say great news! They said the other half is fine as nodules were U2 and not suspicious and I guess now that the removed half wasn’t cancerous they aren’t worried. Just need a blood test in a month to check my thyroid function.

Best wishes to you too

ling profile image
ling in reply to DaniDC

Wonderful!

Yes keep an eye out for thyroid dysfunction, just it case it arises from only half thyroid left.

God bless you and thank you for sharing the good news : )

DaniDC profile image
DaniDC in reply to ling

Thank you Ling- this website has been such a help. God bless you x

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