Possible thyroid removal

[Peppermint20]

After 8 years of seeing an endocrinologist, diagnosed with autoimmune thyroiditis but with no treatment offered because my blood tests were always deemed normal, I had a huge shock last year when I was undergoing surgery for breast cancer. I have had a very large multinodular goitre all this time and the last ultrasound was during Covid. After my surgery the anaesthetist came to see me and said they were referring me to ENT as they couldn’t get the tube down my throat during the operation due to my abnormally shaped larynx. They had managed as it was a short operation but said if it had been longer surgery they might have had to do a tracheostomy! I also had a port fitted for chemo and the surgeon who did this commented on the size of my thyroid. I recently found out the referral was never done; I didn’t chase it as I knew there was a long waiting list for ENT and to be honest going through chemo most of the year left me with no energy to consider any other procedures. My GP has now referred me and I am waiting to see a Consultant. I can’t believe I’ve been left to get to this stage as surely this would have been picked up by ultrasound? I’ve had several done over the years. Feeling very anxious, it really has been a tough year all round.

[SlowDragon Administrator]

sorry to hear you have had such tough time

Get FULL thyroid and vitamin testing done via GP or privately now BEFORE next possible thyroidectomy

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

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.

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

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 that all thyroid blood tests early morning, ideally just 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 then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Only do private testing early Monday or Tuesday morning. 

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...

[Peppermint20 in reply to SlowDragon]

Thank you. I had some private blood tests done recently including vitamin tests but not a really in depth thyroid panel, I will arrange that. My Consultant told me I hadn't got Hashimotos, just autoimmune thyroiditis. I wonder what he feels the difference is.

[SlowDragon Administrator in reply to Peppermint20]

They are one and the same

Technically (in U.K.) Hashimoto’s is autoimmune thyroid disease with goitre

Ord’s thyroiditis is autoimmune where thyroid shrinks and shrivels up

Rest of the world calls both Hashimoto’s

Please add vitamin D, folate, B12 and ferritin results

[Celticfiddler]

hi there I am trying to get my goitre treated with RFA which would avoid surgery. It may or may not be suitable or available where you are but it’s worth finding out about it. I got the info I needed on here . ( Radio Frequency Ablation) hope you feel better soon.

[PurpleNails Administrator in reply to Celticfiddler]

This is a complete post on RFA with lots of information

healthunlocked.com/thyroidu...

Do you have a referral Celticfiddler ?

[Celticfiddler in reply to PurpleNails]

yes I think so will be getting in contact with the clinic beginning of next week

[Celticfiddler in reply to PurpleNails]

just to add have not had receipt of referral confirmed or a time frame and given the confustion I am not 100 percent certain of anything !

[Peppermint20 in reply to PurpleNails]

Thank you.

[Peppermint20 in reply to Celticfiddler]

Thank you, I will look into that, sounds interesting.

[Jaydee1507 Administrator]

I'm sorry that you have had health struggles lately.

Goitres frequently shrink with thyroid replacement hormone alone. It would be worth you getting hold of your latest test results which you are legally entitled to. Ask at GP reception for a printed copy. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Often the NHS only test TSH, sometimes also FT4 but its much better for a ful picture to see your FT3 also. For this you may need privately bought blood tests. See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

[Peppermint20 in reply to Jaydee1507]

Thank you. I did have raised antibodies at the start of all this (not enormously high but enough to concern me) but was told by my Consultant that it didn't really make much difference. My blood test results were passed off as ok by the GP surgery but I queried it when a doctor friend highlighted that the figure didn't look normal. I have tried going gluten free but probably not eliminated as much as I should - just the obvious products and not the hidden. I have lactose free dairy products where possible but perhaps I should change to dairy free. It's a complicated disease, I don't feel doctors really understand it, and you end up having to do your own research to help yourself (but I find that in every aspect of health).

[SlowDragon Administrator in reply to Peppermint20]

Gluten free does need to be absolutely strictly gluten free to be effective

Don’t share butter, cutting boards, separate toaster for GF bread and obviously read all labels

Dairy free

Hashimoto’s patients often react to protein in dairy, not the lactose.

Come back with new post once you get TSH, Ft4 and Ft3 plus both TPO and TG antibodies tested

[Peppermint20 in reply to SlowDragon]

Will do, thank you.

[Celticfiddler in reply to Jaydee1507]

Hi Jaydee sorry for delay in replying. I am closely monitored through my Functional Medicine Practitioner been gluten free and dairy soy and sugar too. I've done loads of metabolic testing over the past 10 years . Got both sets of antibodies and had endocrine issues prior to autoimmune disorders. I'm still in an inflammatory place though most of my concerns are brain and cognition related. Thank You for your response you administrators are absolutely fantastic.

[Jaydee1507 Administrator]

So raised antibodies mean you have autoimmune thyroid disease aka Hashimoto's disease where over a period of many years the thyroid is slowly destroyed.

In a way thats good news for you as it does indicate that you have Hashi's and at some point will need thyroid replacement hormones, usually Levothyroxine. levothyroxine treatment is known to shrink goitres. Thats something for you to discuss with your Endocrinologist.

In some ways they don't change the way the condition is treated - eventually with replacement thyroid hormones - and this is how the NHS see it. There can be differences in presentation and things like the strictly gluten free (sometimes also dairy free) diet helping symptoms.

What were the results of your recent vitamin tests?

Can you find out which antibodies were positive?

Do get hold of your thyroid results and post them here. They may not be as normal as your GP says.

Gluten free diet needs to be strictly gluten free so lots of label reading and looking for hidden gluten.

Ditto for dairy, its also labeled as caseine & whey but only try one thing at a time. Focus on gluten free to start with.