Unbelievably discharged

[Firtyqwerty]

hi I was diagnosed with a rather large thyroid nodule last year and then had FNA US but it was inconclusive as no frank malignant cells were seen . I had naseoscopy and told I wasn’t hoarse and vocal cords were fine . I was classed as thy c2 , benign . I have had no real thyroid bloods done and had a further us done and told nodules hadn’t got any bigger therefore I was being discharged from ENT ! I have had terrible issues with chest pain ( left side ) radiating through to back , painful swallowing and feeling a pressure in my throat , terrible headaches but Drs say it’s all in my head ! I just don’t know where to turn any more for fear I maybe sectioned ! I wouldn’t wish this on my worst enemy !

[Lora7again]

That is awful you should be monitored to keep a check on this

I have had several scans over the years to monitor my multi-nodular goitre to make sure none of them get any bigger. There is chance that a nodule can become cancerous and they should know this.

[Firtyqwerty in reply to Lora7again]

Yes this was my thought exactly ! Just left to not know what is going on with my thyroid ! I would have thought a yearly check up at least ? Thank you for your reply

[Lora7again in reply to Firtyqwerty]

Unfortunately we are left to rot by the NHS I spent 2 years going back and forth to the GPs trying to find out what was wrong with me. I looked like the walking dead with thin hair and I was a size 8. They told me it was the menopause and if it wasn’t for me asking advice about my blood results on a hair loss site I don’t think I would even be here now. I had no knowledge about thyroid disease until I found out I had it. Over the last 15 years I have educated myself by joining sites like this one and several in the USA. Unfortunately what I do know is this is the same all over the world and there a lot of people mainly women with untreated thyroid disease who are being left to suffer.

[Firtyqwerty in reply to Lora7again]

It really is shocking 😮, you just feel like you are being a nuisance and with nowhere left to turn because no one takes you seriously 😟. I think it is a case of researching yourself but you would think Drs would know these things ! I’m glad you’re feeling better now .

[TiggerMe Ambassador]

This sounds awful! Best thing you can do is get a private full thyroid blood test to see what is really going on and then go from there. ENT are looking for physical obstructions but your GP should be at least looking at your thyroid levels!

[Firtyqwerty in reply to TiggerMe]

It is awful , a daily battle ! I think I do need to get my thyroid levels checked , any recommendations where I get them done please. 🤔. Thank you for your reply

[TiggerMe Ambassador in reply to Firtyqwerty]

We are treated very poorly ☹️ thyroiduk.org/testing/

Has your GP not even checked your TSH?

[Firtyqwerty in reply to TiggerMe]

Yes I have had that done but was told it was normal 🤔.

[TiggerMe Ambassador in reply to Firtyqwerty]

Did you see the result? Often 'normal' is just within range which is too wide! Well worth seeing where your free T3 & 4 levels are, if they haven't checked your antibodies worth getting those too and if you are feeling flush one that covers folate, ferritin, B12 and Vit D

[SlowDragon Administrator in reply to Firtyqwerty]

“Normal” is not a result

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

Have you got the NHS app?

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.

This currently only applies in England, not across the whole of the UK. Nether Scotland nor N.Ireland have released an NHS app for patients. (Scotland supposedly due in December '24.) Wales has an app, but only for booking appointments, repeat prescriptions and amending personal details

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

See exactly what has been tested

Often only tested TSH …..completely inadequate

[csj113]

if your doctor is saying all these symptoms are in your head you need a new doctor - stat. Seriously, please get a second opinion as soon as possible. They should certainly be investigating further - for a start the chest pain may be unconnected to thyroid.

[SlowDragon Administrator]

previous post 8 months ago

healthunlocked.com/thyroidu...

Please add actual thyroid and vitamin results and ranges

Are you in the U.K.

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

day, with last dose approximately 8-12 hours before test

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Firtyqwerty in reply to SlowDragon]

Thank you so much , it is very complex the thyroid ! Never had a bit of bother until they found lumps on unrelated problem US ! Wish they had never found them ! 🤦‍♀️

[SlowDragon Administrator in reply to Firtyqwerty]

Come back with new post once you get results

Test in new year now …..too close to Christmas to order kit and send it back before Christmas

You can order kit now ready to do early Jan

[Firtyqwerty in reply to SlowDragon]

Thank you for all the info , I just feel like giving up tbh . This has been going over a year , it really shouldn’t be this hard to get a diagnosis !

[SlowDragon Administrator in reply to Firtyqwerty]

Many members on here took years and years to get diagnosed

Looking at Google ,…..reactive arthritis is considered autoimmune

Having one autoimmune disease makes others more likely

Next time a doctor says "its all in your head" just look puzzled and say "I thought my thyroid was in my neck!"

Great response serenfach

[serenfach]

Next time a doctor says "its all in your head" just look puzzled and say "I thought my thyroid was in my neck!"

Most of us are here because we have had awful GP, Endos etc. Why they get it so wrong when there are so many women with thyroid problems is a mystery. Ah - I think the word women there may give us a clue.

Get armed with knowledge. I knew nothing about the thyroid until I joined this site and it probably saved my life. Read all you can, in short bursts so it stays. Fight on!

[Firtyqwerty in reply to serenfach]

Thank you for the advice , it all seems very complicated and overwhelming , surely there should be Drs who know these things and can treat people ? I went through all this self diagnosing myself when I had reactive arthritis as I’m hla b27 positive , I insisted on the blood test even though the rheumo said I would be negative ! My joints were all swollen and my gp kept telling me to go to A & E as I must have sprained my ankle ! Honestly I’m warn out with it all .🥲

[SlowDragon Administrator in reply to Firtyqwerty]

There’s almost 2 million people in U.K. on levothyroxine

Levo is 2nd or third most prescribed medication in U.K.

Many more trying to get diagnosed

It’s not a rare disease, but it is rarely diagnosed or managed correctly