Whats the treatment for multinodular goitre with normal TSH and subclinical T4? (like one point above low T4)

[Cazcaz11]

anyone got any experience of having a goitre? I am wondering whether they treat with surgery or radioactive iodine in the uk? or whether they will give me thyroxine according to my terrible symptoms even though my numbers are bottom range normal?

[SlowDragon Administrator]

do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results

UK GP practices are supposed to offer 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.

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. They can no longer charge for printing out, rules changed after May 25th 2018

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies Or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Cazcaz11 in reply to SlowDragon]

Medichecks resulted done around july

ENDOCRINOLOGY

Thyroid Function

THYROID STIMULATING HORMONE 1.31 mIU/L 0.27 - 4.20

FREE THYROXINE *11.500 pmol/L 12.00 - 22.00

FREE T3 4.53 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00

ACTIVE B12 80.700 pmol/L 25.10 - 165.00

FOLATE (SERUM) 3.8 ug/L 2.91 - 50.00

BIOCHEMISTRY

Inflammation Marker CRP - HIGH SENSITIVITY *11.75 mg/l 0.00 - 5.00

Iron Status

FERRITIN 57 ug/L 13.00 - 150.00

Docs test done few weeks ago

most recent tests from doc

Serum free T4 level 8.700 pmol/L 7 - 17 pmol/L

Serum TSH level 1.730 mu/L 0.2 - 4.5 mu/L

Ultrasound findings

: goitre confirmed on scan. Overall enlargement of the thyroid to more thanf 60 mm in craniocaudal dimension, no extension into mediastinum. Mild displacement of neighbouring structures. Thyroid contains numerous mixed solid/cystic, predominantly solid nodules of benign appearances (U2). No evidence of thyroiditis. Conclusion: Multinodular goitre. ENT referral would be advisable

Family history: mother had goitre and has been on thyroxine for 30 years which made goitre disappear, nana on thyroxine and cousin on thyroxine but don't know details.

Any help with interpretation appreciated 😊

[SusanAR]

I had the same. I was on and off thyroxine to reduce it from the age of 18 for 20 years. It just kept getting bigger. Finally had my thyroid removed 2 years ago. I can swallow and breathe again!

[Cazcaz11 in reply to SusanAR]

My mum had a goiter but it went away with thyroxine, but her numbers were much worse and they didn't do scans in those days

[Cazcaz11 in reply to Cazcaz11]

At the moment I am waiting for both Endo and ENT apps but feel like I'm drowning in numbers, information and it's hard to tell from the Internet what's the best approach

[HughH in reply to Cazcaz11]

T3 is the active thyroid hormone which controls just about every cell in the body. Free T3 is the best measure of T3 and yours is just below the mid point of the range and most people would feel well at this level.

Your family history points very strongly to a genetic condition Thyroid Hormone Resistance, also known as Impaired Sensitivity to Thyroid Hormone.

This can cause goitre, which should shrink with thyroid hormone medication. With the condition people need high Free T3 to feel well, but this will bring TSH to near zero which doctors will not like.

Dr John Lowe in the USA developed the treatment of a single high daily dose of T3.

[Cazcaz11 in reply to HughH]

That's interesting I've never heard of that version of thyroid disease I will have a look into it. Thanks Hugh. Is there any test that would demonstrate that to convince the docs?

[Cazcaz11 in reply to Cazcaz11]

I forgot to mention my other symptoms include pain, achiness, stiffness and exhaustion which never abates though I sleep pretty well

[Cazcaz11 in reply to Cazcaz11]

I also have the double gene for haemochromatosis which may be a factor

[HughH in reply to Cazcaz11]

I will send you some info by Personal Message.

[Cazcaz11 in reply to HughH]

Great thanks

[SlowDragon Administrator in reply to Cazcaz11]

Hemochromatosis increases risk of Hashimoto's

Your average GP not likely to be aware

redriverhealthandwellness.c...

ncbi.nlm.nih.gov/pubmed/182...

verywellhealth.com/hypothyr...

Rarely, certain diseases, like hemochromatosis, can deposit abnormal substances (iron, in the case of hemochromatosis) in your pituitary gland, causing central hypothyroidism, or less commonly, your thyroid gland, causing primary hypothyroidism.

[Cazcaz11 in reply to SlowDragon]

That's interesting, I had an inkling it could be linked. We only found out when my Mum got high ferritin after menopause and the whole family had to be tested

[SlowDragon Administrator in reply to Cazcaz11]

Surprise your endo if you go in knowing about the link between the two

[SusanAR]

My aunt had hers removed too. They thought she had a shadow on her lung but it was her thyroid growing downwards.

I hope you get your appointments soon. I just spent a year arguing with my GP but now back under the endo and feeling great. I’ve found all GPs to be clueless but my endo is great. Last time he said to me “have you seen your levels? Do any of these people even know you don’t have a thyroid?!” Hopefully you’ll get a good one who can give you good advice.

[Cazcaz11 in reply to SusanAR]

I have the endo appt end of Oct, so bit of a wait but hopefully know more before Xmas!

[SusanAR]

Hope it goes well for you 😊