thyroidectomy

[Anataka72]

I have recently seen a specialist who has suggested i have my thyroid removed due to a large nodule on the left and a small cyst on the right. My recent bloods show that my thyroid is functioning normally. I would just like to know if anyone else has experienced this as I am quite scared about the long term impact not having a thyroid, will it eventually become cancerous? I am also worried about having to take medication for the rest of my life as currently I don't take any. I have read about people suffering with depression and anxiety following this operation and taking the medication.Any advice or experiences would be a great help. Thank

[PurpleNails Administrator]

Have the nodules had a fine needle aspiration (FNA)?

Does the size of thyroid / nodule cause breathing, swallowing, voice problems or pain?

Nodules aren’t that uncommon, generally nodules over 1cm are biopsied but are not thought to become at risk of becoming cancerous. I’m wondering why surgery is suggested unless function abnormal or a physical issue is impacting you.

Has FULL function been tested?

Often doctors go by Thyroid stimulating hormone (TSH) it’s assumed that if this pituitary hormone -which tells the thyroid to produce thyroid hormones- is in range so will actual thyroid hormones. (Not totally reliable)

What are your FT4 & FT3 free thyroxine & free triiodothyronine levels.

Your function might appear normal, but you need a full thyroid levels before considering surgery to know what your benchmark is for post surgery.

I wish I’d known to alway check my own results. I had a large 5cm nodule scanned and FNA and was advised ok when I chased up function results. It was many months later I discovered the function results were not processed, and going through old records discovered they likely had been abnormal many years.

Might also be good idea to test thyroid antibodies (TPO & TG antibodies) and folate, ferritin, B12 & vitamin if they haven’t been.

Obtain results and *ranges* either online access or print out. Not verbal or hand written. Alway obtain unique lab range as they vary between labs.

Depression and anxiety can occur after surgery if not adequately replaced.. That might not become an issue for you. You can also learn to understand your results now & advocate for the right treatment before such an issue arises.

Without a thyroid it’s necessary to take pill/s everyday to replace the missing hormone, but it’s best thought of as a replacement hormone not a drug or medication.

Some react to tablet fillers but once you find a suitable brand you can stay with it.

[jimh111 in reply to PurpleNails]

Excellent advice.

[Anataka72 in reply to PurpleNails]

Thank you so much for your reply. I will be copying this and taking it with me when I see my GP next week. I haven't had any symptoms really, just the nodule. My blood results showed my thyroid is functioning normally, but I will ask to see these and also discuss what you have suggested.

I have had 2 scans within the last 2 years. Both times showed the nodule has grown and it is now 4cm, I did tell the consultant that I am anxious about it and wanted some reassurance, however this second scan he suggested it is time to have it removed if it is causing anxiety. So now I am feeling more anxious about it.

I hope you are feeling well and thank you again for your advice.

[Anataka72 in reply to Anataka72]

Sorry, I forgot to say that I haven't had or being offered a FNA.

[pennyannie]

Hello Anataka and welcome to the forum :

You questions and concerns are quite normal as the thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Living without a thyroid does mean you will be taking medication for the rest of your life and for some people, me included, it has meant that I have had self medicate as currently not all thyroid hormone replacement options are available on the NHS.

If you feel well and not with any breathing or swallowing issues I'd play for time.

Do you have any recent TSH, T3, and T4 results and ranges ?

What originally took you to the doctors for this to have been the diagnosis ?

[Anataka72 in reply to pennyannie]

Thank you for your reply. I do not have any breathing or swallowing difficulties. I have a slight pain in my neck, but I don't think it is related.

I am visiting my GP next week to discuss my blood results, but I have called them and they have said they're all normal. But I have been advised to look in to this further myself as often they do show out of range.

I went to the doctors originally for something unrelated and my doctor noticed the lump in my neck. I wouldn't have been any the wiser otherwise.

Thank you again for your reply.

[pennyannie in reply to Anataka72]

Ok then , when you go next week ask for a ' printed copy ' of your blood test results -

Make sure you have the ranges as well as the results and post them both on here and forum members can explain what these mean.

You might like to dip into Thyroid UK - the charity who supports this forum - thyroiduk.org - where you can read around all things thyroid - as well as reading up of other people's health issues on this forum.

Start a new post next week, if you wish for any further explanations on anything as this rolling screen gets very busy and a post over 2 days old, is usually considered actioned.

[Anataka72 in reply to pennyannie]

Thank you, I will do that. Great advice.

[Hedgeree]

Hello Anataka72,

Welcome to the forum!

PurpleNails is giving you great advice. People here are very friendly and knowledgeable. There is huge amounts of collective personal experience from all the members.

You possibly feel swamped at the moment but take your time to search around the site and read some of the other posts.

Best wishes.

[Anataka72 in reply to Hedgeree]

I am so very grateful for all the advice and support from you guys in this forum. And PurpleNails has given me lots to look in to and discuss with my GP, I feel much better equipped to have a discussion. Thank you for replying.

[Hedgeree in reply to Anataka72]

As PurpleNails says you need to get an FNA done on your nodule.

Do you have a good GP?

Hopefully they are someone that you can talk things through with.

Best wishes.

[Anataka72 in reply to Hedgeree]

GP called today and has referred me direct to the Thyroid Specialist. Not sure what to think about that.

[Hedgeree in reply to Anataka72]

Hi Anataka72,

I think that sounds like it'll be a good thing. Your GP is refering you onto a specialist; I'm assuming that they'll possibly be an endocrinologist?

Whoever the specialist is they will be the person that will get you referred to the ultrasound clinic for an FNA.

Once you get a biopsy done you will have more information about what your nodule is doing and if anything looks suspicious about it.

I realise it is difficult not to worry and you probably feel overwhelmed but try not to think ahead.

As others have said make sure you get a full set of thyroid results and their ranges and you can post them on the forum so they can advise you.

Your GP does seem very good and is getting you referred on to the right places and not dithering which is great to hear.

Best wishes.

[Anataka72 in reply to Hedgeree]

Yes he has been very good. It's all happened in the space of 3 weeks, bloods scan and now a referral. Everyone in this forum have been so lovely and have given me a lot of really good advice.

I will post my results in a separate post once I have them.

Thank you again.

[SlowDragon Administrator]

but I have called them and they have said they're all normal. But I have been advised to look in to this further myself as often they do show out of range.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

[Joant24]

I would ask receptionist for a printed copy of your results before your GP appointment. You can then post them here and get lots of advice before you speak to the Dr.

[Brightness14]

I had mine removed back in 2015. It just started with breathing problems my thyroid was working well but the lump was pressing on my trachea. When my thyroid was removed andit was checked and found to have papillary cancer. That was seven years ago and I am well

it has made no difference to my life thanks to the help from the people on this site. I never took any medication before my TT and now take NDT which I source myself. The only thing I will say is for you to find the best and most experienced surgeon, that very important.

[Anataka72 in reply to Brightness14]

Good to hear that you are well and the thyroidectomy hasnt impacted your quality of life. I am definately worried about developing cancer. I have been referred today to a thyroid specialist so hopefully I will get a chance to discuss all of my worries. Thank you for replying.

[DearH in reply to Anataka72]

Curious to hear how your story went further. I am in a similar position now.