Have come to a full stop.

[Tat67]

After having small goiters for a few years,

they moved to the front of my neck a couple of years ago.

 self referred myself to ENT and had many appts and rebuffs until recently.

I was told that the goiters have grown so large on both sides that they are pushing on my windpipe and needed to come out.

2 months ago i had pre op and they found an anomaly in my ecg.

I was told by pre op team that they are holding off until they receive results of PET scan,which i had 10 days ago.

Yesterday i received an letter from ENT re an appointment in September.

My anxiety is through the roof!

I feel unarmed and have no clue about PET results or where I stand with my TT.

Should I hang fire until September?

Or try and contact Pre op to get more info- I just want the op to be done, I'm tired of being sick an tired.

Thank you for reading.

Feeling a little alone with this.

[SlowDragon Administrator]

Welcome to the forum

Do you have any recent thyroid or vitamin testing results and ranges you can add?

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Nodules common with Hashimoto’s

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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...

[Tat67 in reply to SlowDragon]

The last time I was tested was last year by the Gp. I was tested 2 months ago by pre op, but cannot access results.

[SlowDragon Administrator in reply to Tat67]

Frequently GP only tests TSH

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

[PurpleNails Administrator]

Do you have a thyroid nodules in both thyroid lobes or is thyroid swollen (goitre).

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.

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.

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

Your a legally entitled to all your results & records.

This includes GP blood tests, hospital blood tests and scan reports.

For GP tests - online access is useful, not all practices offer it and it can take time to set up.

In meantime obtain printout of results. Never accept verbal or hand written. Alway obtain printout with unique lab range they vary between labs.

For hospital records contact the department carrying out blood test or scan and ask for copies. If obstructive there are formal ways to obtain copies from hospital.

[Tat67 in reply to PurpleNails]

Nodules in both.

[PurpleNails Administrator in reply to Tat67]

I have a large nodule just over 5cm. It’s within the left lobe but is prominently over the isthmus (bridge between lobes) so it’s off centre.

Mine does hyper function and is under control with medication but if the nodules are a physical concern that is why doctors are suggesting surgery.

I would still stress full thyroid very important for 2 reasons. Firstly the baseline or benchmark to compare pre and post surgical levels.

Secondly if you were to have an underlying thyroid autoimmune issue which has gone unnoticed because TSH appears normal & FT4 \ FT3 and thyroid antibodies have not been tested there is a potential that treatment of replacement hormone would reduce nodules & size of thyroid.

Having anxiety & being tired are thyroid symptoms. See tick box link as there are many varied symptoms.

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

[Tat67 in reply to PurpleNails]

WowI probably have 70% of those symptoms.

Should I get tested through NHS to get baseline or do these privately?

Its near on impossible to get a gp appt where i live.

[PurpleNails Administrator in reply to Tat67]

Would likely be quicker & more complete if you arrange privately, - especially if your not offered an appointment!- NHS often unable to test FT3 & vitamin’s particularly Vitamin D.

Medichecks in slowdragons reply above good option. Order kit online (discounts listed on thyroid uk site). Be well hydrated & prepared - read all the tips & advice. Fingerprick sample taken at home. Just before 09.00 ideal time- after fasting overnight.

Extra fee for private draw. Post back sample & results can be available online quite quickly.

[Tat67 in reply to PurpleNails]

Good stuff, I'll do that today.

Thank you.