Goitre and virtually no TSH: I’ve had a... - Thyroid UK

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Goitre and virtually no TSH

EdinburghLass1977 profile image

I’ve had a multinodular goitre for a year. All my blood tests were fine so they did an ultrasound of my neck and said they would just monitor it but all looked fine.

Had a blood test for something else last week and she did thyroid levels as well. My TSH came back as none existant but my circulating thyroid level is ok. Does this mean my goitre is now active and I’m nearly in hyperthyroidism? She wants to do blood test again in a few weeks and then refer to endocrinology if it’s still as low.

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EdinburghLass1977
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PurpleNails profile image
PurpleNailsAdministrator

TSH is a pituitary hormone which stimulates the thyroid to produce.

So high thyroid levels causes the TSH to lower *usually*

Doctors look at TSH and think they can predict what the thyroxine (T4) & triiodothyronine (T3) are doing. Not always the case. The TSH is unreliable and can take time to respond even in healthy individuals. Once they thyroid is dysfunctional it can become sluggish. You need the (Free) FT4 & FT3 measured. do you have your results?

Online access to record very useful, if practice offers, if not obtain printout with ranges from practice receptionist. You are Legally entitled to them. Always obtain printout with ranges as ranges vary between labs. (Don’t accept verbal or hand written)

Although a multi nodular goitre could explain high levels (low TSH) it’s not the only cause. Have you had thyroid antibodies tested?

TPO & TG antibodies, if hyper TSI or TRab should also be tested.

I have a large solitary nodule, without autoimmune. My TSH became suppressed and FT3 began to rise initially - but it was years later before FT4 was over range although the FT3 was always disproportionately higher.

Have you had a recent scan of the thyroid?

Also important to test folate, ferritin, B12 and vitamin D. NHS do not always test FT3 and nutrients, sometimes Drs go by TSH alone. Private options are available for blood tests.

Yes the thyroid was scanned a year ago to diagnose my goitre as I could feel a lump in my neck. Turns out there are several. All I know is my TSH is very low and my circulating thyroid level 🤷‍♀️ is in the normal range. I don’t know whether this means T3 or T4 but I’ll see what they say after second blood test and ask for more specific results.

SlowDragon profile image
SlowDragonAdministrator in reply toEdinburghLass1977

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

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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

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

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally 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 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

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

greygoose profile image
greygoose

What time of day was the blood draw?

A goitre is just a swollen thyroid, so it can't 'become active'. And, if one of the nodules had started producing its own hormone - as they sometimes can - it would show up in your FT4/3 levels. If they were in-range, then no, you are not becoming hyperthyroid. A low TSH on its own does not automatically indicate hyperthyroidism because TSH levels vary throughout the day. The three readings have to be considered in conjunction with each other. :)

EdinburghLass1977 profile image
EdinburghLass1977 in reply togreygoose

Hi, it was drawn at 8AM. My GP says that the first stage of an active multinodular goitre is that the TSH drops because it isn’t needed anymore…because the goitre is producing extra thyroid hormone and the TSH is no longer required to stimulate it? She said initially the thyroid levels themselves will be normal because the pituitary has switched off TSH in order to lower them…because the TSH isn’t needed because the multinodular goitre is active and producing it’s own thyroid hormone anyway? I don’t know. That’s just what I was told 🤷‍♀️ no idea what’s going on. Guess I’ll just wait till the follow up blood test in a couple of months. 🙏

PurpleNails profile image
PurpleNailsAdministrator in reply toEdinburghLass1977

That’s quite a plausible explanation by your GP.

If a nodule is producing a tiny quantity of extra hormone the TSH lowers as the thyroid doesn’t need to produce as much.

There may be a time the FT4 & FT3 are still in range.

In my own case, thats it what likely occurred - with levels rising in a gradual and steady manner.

I began treatment with an antithyroid when my both my FT4 and FT3 were above range.

However I went through old hospital records looking for previous “healthy” results and discovered many years before I had suppressed TSH, FT4 midrange & FT3 fractionally high. (I’d accepted a verbal ok, & not known to check my own results)

What’s Important is how your FT4 & FT3 have changed - have they always stayed about midrange? lower in range might be normal for you or higher. It’s the change to your FT4 & FT3 which is important & what’s normal for you.

Often doctors like to treat low TSH. Even if FT4 & FT3 are “normal” - in range or even very low / below range.

EdinburghLass1977 profile image
EdinburghLass1977 in reply toPurpleNails

Thanks, that makes sense. I think that’s what they are saying…that it indicates that my goitre is probably causing elevated thyroid hormone so my TSH has stopped being made in order to keep the levels within the healthy range. Because Ive already been diagnosed with the multinodular goitre that is the most likely explanation. They are going to refer me to endocrine at hospital if the level is still undetectable in the next blood test.

PurpleNails profile image
PurpleNailsAdministrator in reply toEdinburghLass1977

As you have a known nodular goitre it is a likely explanation - but it should not be assumed it is the issue without any confirmation. You still need antibody testing & full testing.

My hyper nodule was confirmed with an uptake scan, which highlights the activity through the thyroid, (ultrasound, do not determine activity). This was because my antibodies were negative.

If thyroid levels do become continuously hyper from a nodule the specialist will likely recommend radioactive iodine treatment (RAI). Which destroys cells in the thyroid and therefore the ability to produce the same level of hormones. In most cases after treatment you become hypothyroid and require replacement hormone. If RAI isn’t suitable surgery is suggested. Doctors view this as safer than potential hyper. Long term antithyroid is strongly discouraged by doctors.

It’s a bit early to concern yourself with this yet but if / when at this stage don’t be rushed by your doctor into irreversible treatments without research.

Hedgeree profile image
Hedgeree

Hi EdinburghLass1977,

I realise I'm just echoing what others have said but it's really important to get copies of your blood results either from the surgery's reception (printed copy or via email) or via online access to your patient records if your surgery offers that.

I relied (naively) on the belief that my gp would tell me if my blood results weren't right or not optimal but that wasn't the case. For myself getting the results (and their ranges) has been a revelation and the realisation that my health issues are not all in my imagination as I have been told for some years now is both shocking and a relief at the same time.

I've just been diagnosed with a multinodular goitre and am currently having regular monitoring of a large nodule hoping to avoid a partial thyroidectomy (which I've been told will be the only option if it needs to be removed) Still undergoing the diagnosis process as I've got other possibly pituitary stuff occuring.

If I hadn't got access to my results I would have been getting more and more symptomatic but at the same time being told my blood results were in range and fine. So I can't emphasis how important it is to get access to them and post them on the forum starting a new post where knowledgeable members can advise you.

Best wishes.

EdinburghLass1977 profile image
EdinburghLass1977 in reply toHedgeree

Thanks so much, I’ll ask at the surgery. I’m in Scotland and I haven’t heard of anyone getting access to their results but I’ll certainly push for it.

Hedgeree profile image
Hedgeree in reply toEdinburghLass1977

Yes sorry.... I almost started to rant then but I can't emphasize how important it can be.

It's certainly being life changing for me and an eye-opener!

Good luck.

Hedgeree profile image
Hedgeree in reply toEdinburghLass1977

As others have said you're legally entitled to them and just say you want them for your personal records.

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