Shrunken thyroid

[Misstee2]

I have just received a phone call from my doctor. I had a neck scan that showed the swelling on each side of my neck was just fat. They had scanned all my neck a d said that my thyroid had shrunk due to using T3. I recently went T3 only. I’ve not taken T4 for a long time due to very bad reactions. I used to be on Thyroid S.

I don’t have any test results at the moment as I’ve been due to have one but doctor has been telling me to cut back on meds then wait 8 weeks and I haven’t yet had 8 weeks on the same dose. I tried cutting back but when I am under medicated, I get cellulitis under my eyes.

I had a cortisol test done a month ago and I asked about those results and was told it was “fine”.

I have always felt well on all non T4 only meds, I tried metavive as well. My only problem is my weight, just can’t shift it. Because of that, I upped my T3 from 50mg to 75mg with no difference.

Please can anyone shed any light on the shrunken thyroid before I speak to the doctor again? I would appreciate your better knowledge.

[SlowDragon Administrator]

Thyroid shrinks due to autoimmune thyroid disease (Ord’s thyroiditis) …..not due to medication

Have you had thyroid antibodies tested in past

Your thyroid would have been under attack and the reason you were started on levothyroxine

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12

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 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

What vitamin supplements are you currently taking

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

When on T3, day before test, split dose into three smaller doses roughly equal 8 hour intervals. Taking last dose T3 at roughly 8-12 hours before test

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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

[Misstee2 in reply to SlowDragon]

Thanks SlowDragon.

I didn’t think it would be meds related. I finally got the doctor to agree to test vitamins but like I said, waiting for a test once I’ve been on same meds for eight weeks.

I only got tested for autoimmune at the very start of my hypothyroid diagnosis. I will ask for that to be repeated now that I know that is a more likely cause of the shrinkage.

Thank you for sharing your knowledge. Now I have something to request and knowledge to back it up.

Thanks again.

[SlowDragon Administrator in reply to Misstee2]

Was test positive when originally tested?

NHS only tests TG antibodies if TPO antibodies are high

Significant minority of Hashimoto’s patients only have high TG antibodies and NHS refuses to test

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

20% of Hashimoto’s patients never have high thyroid antibodies

In which case are diagnosed by ultrasound (as you have been)

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

ada.com/conditions/thyroidi...

Also known as Ord’s disease, this autoimmune condition is characterized by atrophy of the thyroid gland and hypothyroidism. It is very similar to Hashimoto’s disease, apart from the shrinking of the thyroid gland instead of the development of a goiter. Ord’s disease and Hashimoto’s disease have historically been classified as separate disorders, but research suggests that they may instead be different manifestations of autoimmune thyroiditis, with some medical practitioners calling for the combined term Ord-Hashimoto’s disease to be used.

European population apparently has higher incidence of Ord’s

en.wikipedia.org/wiki/Ord%2...

[Misstee2 in reply to SlowDragon]

Thanks for all that info SlowDragon, that’s really useful. I was negative when first tested. I’m going to read all those links so that I know what I’m talking about when the doctor calls back.

Thanks again, you are a star.

[SlowDragon Administrator in reply to Misstee2]

Likely you only have had TPO antibodies tested if tested by NHS

Getting BOTH Tpo and TG antibodies tested via Medichecks or Blue Horizon recommended

[Misstee2 in reply to SlowDragon]

Thanks SlowDragon, I need to get that done.

[serenfach]

They do come out with some rubbish, dont they! A person with a healthy thyroid has T3 circulating, so if T3 was to blame, no one would have a full size thyroid!

Next it will be "I have a cut on my finger" - oh that is your T3!

You have to laugh, or you would cry!

[Misstee2 in reply to serenfach]

LOL, it really feels that way doesn’t it 🤣🤣🤣