Does having a goitre always mean you have a thyroid problem. Asking for someone else

[BiscuitBaby]

Hi I don't and never have had a goitre so I can't use my experience to help. I'm working with someone who has developed a large goitre. She has pain in her neck, radiating to her ear, she has a diagnosis of fibromyalgia, gall bladder removed, type 2 diabetes amongst other things. She has been told her calcium levels are high. She can tick almost all the boxes on the thyroid uk tick list. She has had her thyroid bloods done. I looked at these and her tsh is low normal and her t4 was low normal. I can't remember exactly. She has had an mri brain scan and nothing showed up. She saw ent who referred her to physio!!! Gp hasn't referred her to endocrinology. My question is does the presence of a goitre always mean you have a thyroid problem. Scan ruled out cancer. Her treatment from gp is shocking. She has a mental health diagnosis that seems to be influencing gp. I'd like to encourage her to go private but I want to be more sure that the goitre does indicate a problem. Thanks for reading and any advice welcome.

[SlowDragon Administrator]

she needs FULL thyroid including thyroid antibodies and very important to test vitamin levels too

For full Thyroid evaluation TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once for autoimmune

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

Low vitamin levels tend to lower TSH

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)

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 is she taking

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)

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

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

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

[BiscuitBaby in reply to SlowDragon]

Hi SlowDragonYou deserve a medal for your quick responses! Thank you. I know she was found to have vit d deficiency so takes this now. The gp just keeps prescribing more and more stuff without hitting the mark. She was on morphine patches, 20mg daily diazepam and pregabalin and mirtazapine. I've never seen such a level of prescribing. They've eventually taken her off a lot of these and her symptoms are worsening as the goitre gets bigger. I'm trying to convince her to do private testing but I am just not 100% confident telling her that it's worth it. I don't want to get her hopes up. I would feel more confident if I was more certain about a goitre being a problem. For some reason she still has a level of trust in the gp! Although she called the ent surgeon a stupid man for suggesting that her goitre was a neck spasm! I'm trying hard but people trust their doctors. I forget that because I don't now!

[J972 in reply to BiscuitBaby]

Hyperparathyroidism is associated with high calcium levels nhs.uk/conditions/hyperpara...

Might be worth a consideration, in addition to the suggestions already made.

[Regenallotment Ambassador in reply to J972]

Ditto BiscuitBaby I was going to suggest parathyroid investigation. Surprised they didn’t check the scans. Have they had PTH tested that’s one of the blood tests they do. Wish them well 🌱

[BiscuitBaby in reply to Regenallotment]

J972 I think they have tested and found high calcium twice but she said the gp is just waiting to see! She has so much faith in her doctor I'm finding it difficult to get her to ask for the information and question or challenge! I have been thinking and I might just get her to get a medichecks test kit and see what happens. The problem will come if those tests show abnormalities. We will have to work on her being more assertive. Not easy when you have very poor mental health! Both in terms of actually doing it and getting medics to listen!

[J972 in reply to BiscuitBaby]

You’re being a great friend, good luck with everything 😊

[BiscuitBaby in reply to Regenallotment]

Not sure of all the tests. It's really difficult trying to get her to question the gp! God knows why after what they've prescribed her over the years.

[humanbean]

I don't know what the risk is these days of people having low iodine in the UK, but it can cause goitre.

ukiodine.org/

bda.uk.com/resource/iodine-...

Historically there was a condition known as "Derbyshire Neck" at one time because foods grown in that area were low in iodine. Obviously these days people eat foods grown all over the place so low iodine might be less likely, but depending on diet it is still possible to have low iodine.

wakefieldexpress.co.uk/heal...

emgs.org.uk/Mercian/Mercian...

In Asia goitres and hypothyroidism are much more likely to be caused by low iodine rather than the autoimmune variety of hypothyroidism which occurs in Europe and North America.

Another factor that affects iodine absorption in the body is selenium deficiency.

verywellhealth.com/selenium...

ncbi.nlm.nih.gov/pmc/articl...

So, perhaps your friend should have her iodine and selenium tested.

The most accurate iodine test I know of is the non-loading test done with a urine sample. Genova Diagnostics does such a test but be aware that they don't deal directly with the public and you have to follow the instructions supplied by Thyroid UK linked below, or another company called pulse screening :

thyroiduk.org/testing/priva...

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

and pulse screening is another company which gets iodine tested via Genova Diagnostics

pulsescreening.co.uk/genera...

And another company which does iodine testing in urine, but without involving Genova is :

gettested.co.uk/product/iod...

but it says it is currently out of stock.

...

her tsh is low normal and her t4 was low normal

One possible reason for having these two results is that your friend might have Central Hypothyroidism, which is caused by a problem with the Hypothalamus or the Pituitary. As a result the level of TSH the pituitary produces is too low. And low TSH causes the actual thyroid hormones Free T4 and Free T3 to be low too.

I'm not sure of my facts here, but I think another possible cause of the results your friend has is Atrophic Thyroiditis, a condition I have read little about and the only info I have on it is :

thyroidpatients.ca/2021/12/...

thyroidpatients.ca/2018/12/...

...

Goitre can also occur in cases of hyperthyroidism, not just hypothyroidism.

en.wikipedia.org/wiki/Goitr...

[BiscuitBaby in reply to humanbean]

Thanks humanbeanThat's definitely food for thought. I'll sift through this and have a chat.

[Lily905]

I had a small goitre for decades & it didn't cause me any problems. When I was really tired it used to ache. When I felt my thyroid had gone under active my goitre rapidly grew from the size of a bantem egg to the size of a goose egg in a few months. I was given a scan & I ended up having all of my thyroid & goitre removed.

[BiscuitBaby in reply to Lily905]

Thanks, the ent surgeon has referred her to the physio for the time being so surgery is not on the cards in the near future.

[Lily905 in reply to BiscuitBaby]

That's good. Surgery is only for extreme cases. If my goitre had remained small I would not of told my doctor about it.