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Original poster

If you have a goitre, do you have hypo- or hyperthyroidism as well?

29 replies

AsItWas22 · 07/10/2022 11:04

As in the title really…!

I have a non-toxic multi nodular goitre.

I have had a few NHS thyroid tests over the years but always seem to come out in the average range.

I am wondering whether it is worth seeing a private endocrinologist for more in depth checks.

Or, is there no link between goitre and over/under active thyroid?

OP posts:
KangarooKenny · 07/10/2022 11:11

I had a goitre in my late teens, I was well and never did anything about it. I only knew as a stranger mentioned it one day. It disappeared at some point.
‘In my 40’s I became hypo thyroid.

Primroseprimula · 07/10/2022 11:18

I had a goitre for years before developing underactive thyroid (hashiomotos) . Have they tested for antibodies? If you have antibodies I think it can signal the likelihood of developing graves or hashiomotos.

Utterlyexhausted · 07/10/2022 11:20

I have a multinodular goitre and had a biopsy on the largest nodule..it's benign.

All bloodwork is normal as well. I never test positive for antibodies and my tsh is always around 1 or 2.

As per my name, I'm so tired! Part of me thinks, maybe, science hasn't discovered all there is when it comes to this condition & we slip through the medical cracks so to speak.

SBAM · 07/10/2022 11:22

I have/had a goitre. It’s not really visually noticeable but I could feel pressure when swallowing.
I had my thyroid checked, it was overactive and had a huge TPO score. Checked again two months later and was normal or borderline under active.
Since then it’s remained ‘normal’ with TSH in the high end of the range but I have symptoms so requested a trial of thyroxine (very low dose) which I am still on 5 years later.

Original poster
AsItWas22 · 07/10/2022 11:39

I wasn't sure I'd get any responses!

The reason I posted is because my GP is utterly refusing to refer me on, or to do any tests other than TSH and T4.

My most recent TS was 0.44 with a reference range of 0.4-4 and Free T4 was 16.1 wit a reference of 9-22.

I'm wondering if it's worth getting one of the the Medichecks/ Thriva full test kits and looking at my antibodies etc.

We are TTC and having no luck so far...

OP posts:
KangarooKenny · 07/10/2022 11:46

Have you had a look on the NICE guidelines ?

Original poster
AsItWas22 · 07/10/2022 13:13

No, but at the same time I don’t feel up to battle with the GPs… I think it’d be easier and quicker to get them done privately?

OP posts:
Leafblow · 07/10/2022 13:25

I had a fairly noticable one when I first got diagnosed with underactive thyroid. Its one of the reasons I went to the doctor, along with not sleeping , weightloss and needing to pee all the time.
Its not visible anymore and I can only feel it a little bit if I poke around on my throat, but I have been on medication for years.

Sandysandwich · 07/10/2022 13:27

Leafblow · 07/10/2022 13:25

I had a fairly noticable one when I first got diagnosed with underactive thyroid. Its one of the reasons I went to the doctor, along with not sleeping , weightloss and needing to pee all the time.
Its not visible anymore and I can only feel it a little bit if I poke around on my throat, but I have been on medication for years.

*overactive fgs
My brother has just got diagnosed underactive and Ive got used to typing that one

ErinAoife · 07/10/2022 14:19

I had a goitre but my thyroid level were normal however consultant decided to remove it as it was growing rapidly and he was afraid that I will have breathing difficulties and my neck was very swollen. Half of my thyroid has been removed but have no issue no medication as level still normal however need to have blood test every 6 months to check it

DeedIDo · 07/10/2022 16:12

OP, you need this sorting out if you want to conceive.

The guidelines will tell you that your TSH needs to be under 2 or 2.5. That usually means that thyroid hormones are higher in range, but your T4 is only just over halfway through the range, so your T3, which is the active hormone will be similar, which is too low.

If I were you, knowing what I know now, I would get a full private test done and then use it as a lever to get your GP to help you. The good people at ThyroidUK can advise re your current results, any others you get and the process for getting a private test.

Good luck

ChittyChittyBoomBoom · 07/10/2022 16:15

Yes I’ve had a multi nodule goitre for the last 5 years. I was referred to an endocrinologist who did the full panel of blood tests which were all in range. My gp runs the basic blood test every year to check but so far, the results are always in range.

Original poster
AsItWas22 · 08/10/2022 10:49

I have ordered an advanced thread check with Medichecks so I will let you know how I get on.

@DeedIDo you sound knowledgable! Smile What would the T4 score indicate in this case, do you know?

OP posts:
BlackInk · 08/10/2022 16:33

Hi @AsItWas22 Have you been referred for checks that the lump isn't anything nasty? An unexplained thyroid swelling should be referred on the urgent 2 week pathway and it sounds as though your is unexplained with your levels being normal. I saw my GP a week or so ago because I'd noticed a swelling at the bottom of my neck. GP confirmed it was my thyroid and referred me straight away. My TSH, T3 and T4 are all lower end of normal range. My lump is small enough that most people wouldn't notice it but I can feel it when I swallow and feel pressure when I lie down.

Jodie569 · 10/10/2022 08:02

Hi AsItWas22, my doctor wasn’t going to refer me either because my TSH was normal but I did private and my t4 is 24 and my T3 low- which is either borderline or over active.

i made my doctors refer me, I saw ENT who said I have some nodules. My neck is swollen at the bottom part but all over thyroid. I have an ultrasound booked in Friday.

please make sure you get checked. I went to a different doctor cried and begged that I’d needed to be referred. My thyroid makes it uncomfortable to breath when I’m laid down and that’s been going on for years so least I know why now. Good luck

Jodie569 · 10/10/2022 08:03

ChittyChittyBoomBoom · 07/10/2022 16:15

Yes I’ve had a multi nodule goitre for the last 5 years. I was referred to an endocrinologist who did the full panel of blood tests which were all in range. My gp runs the basic blood test every year to check but so far, the results are always in range.

Hi chitty, do they do an ultrasound/biopsy on yours? How big is it?

ChittyChittyBoomBoom · 11/10/2022 10:11

Yes I’ve had a few ultrasounds and the largest nodule is 5cm. I wasn’t referred for a biopsy as they were happy from the scan that it was nothing sinister.

Jodie569 · 11/10/2022 11:32

ChittyChittyBoomBoom · 11/10/2022 10:11

Yes I’ve had a few ultrasounds and the largest nodule is 5cm. I wasn’t referred for a biopsy as they were happy from the scan that it was nothing sinister.

Hey chitty, Thank you for replying. i really hope this is me too but I think it’s so big they will want to biopsy it and It’s probably been there so long growing it might have turned nasty, as not had it seen.

Original poster
AsItWas22 · 11/10/2022 12:26

BlackInk · 08/10/2022 16:33

Hi @AsItWas22 Have you been referred for checks that the lump isn't anything nasty? An unexplained thyroid swelling should be referred on the urgent 2 week pathway and it sounds as though your is unexplained with your levels being normal. I saw my GP a week or so ago because I'd noticed a swelling at the bottom of my neck. GP confirmed it was my thyroid and referred me straight away. My TSH, T3 and T4 are all lower end of normal range. My lump is small enough that most people wouldn't notice it but I can feel it when I swallow and feel pressure when I lie down.

Well, I guess that depends what you mean by referred for checks? My dentist identified I had a goitre a few years ago. I went to the GP who said the NHS referral pathway was long so had a private scan which identified ‘non-toxic multinodular goitre.’ Since then I have had no conversations with my GP about it.

My Medichecks test kit has arrived today so I’m going to see what that says and then take it from there.

OP posts:
Rainallnight · 11/10/2022 12:28

I have a goitre and my bloods are normal. My mum was the same.

BlackInk · 12/10/2022 10:43

This is really confusing, that everyone's treatment is so different!
Is a goitre different from other thyroid swellings/masses/nodules?

My GP, and info I have found online, suggests that any thyroid lump should be checked by ultrasound as a minimum (and usually also biopsy) to rule out cancer on the 2 week wait pathway. Is it because my thyroid blood tests are normal that they seem more concerned?

Jodie569 · 12/10/2022 12:03

BlackInk · 12/10/2022 10:43

This is really confusing, that everyone's treatment is so different!
Is a goitre different from other thyroid swellings/masses/nodules?

My GP, and info I have found online, suggests that any thyroid lump should be checked by ultrasound as a minimum (and usually also biopsy) to rule out cancer on the 2 week wait pathway. Is it because my thyroid blood tests are normal that they seem more concerned?

Hi blackInk, I’m confused too! How you been this week? I’ve been very up and down! Extremely worrying now because I have pain in my neck and pains in body. Anxiety is through the roof. My heart is low and high! I can’t wait till Friday! I’m annoyed mine is in the afternoon but least we are getting seen.

from reading on here I think what we have is quite common though.

Jodie569 · 12/10/2022 13:11

Rainallnight · 11/10/2022 12:28

I have a goitre and my bloods are normal. My mum was the same.

Hey rainallnight, did they Do an ultrasound on you and biopsy?. Mine feels really big and covering the whole thyroid All along on my sideway,

Stressyundressy · 12/10/2022 13:28

I have a large multi nodular goitre and my levels have been sub-clinical hyper for years but no symptoms (my symptoms are actually more hypo than hyper at least) so I've been on no medication.

I have had the largest nodules biopsied (some more than once as they keep growing) and have a yearly ultrasound.

However the nodules have kept growing so I'm now on a pathway to get my thyroid removed as the goitre is so large (it's noticeable) it's starting to impact me physically. Think the largest is over 70mm.

As far as I know the pathway is biopsy only if other factors such as size are met.

Jodie569 · 12/10/2022 14:53

Stressyundressy · 12/10/2022 13:28

I have a large multi nodular goitre and my levels have been sub-clinical hyper for years but no symptoms (my symptoms are actually more hypo than hyper at least) so I've been on no medication.

I have had the largest nodules biopsied (some more than once as they keep growing) and have a yearly ultrasound.

However the nodules have kept growing so I'm now on a pathway to get my thyroid removed as the goitre is so large (it's noticeable) it's starting to impact me physically. Think the largest is over 70mm.

As far as I know the pathway is biopsy only if other factors such as size are met.

Hi Stressyundressy, you must be in pain from it. I bet you can’t wait to get them removed?. My lump is visible and if I sit/lay down it really restricts my breathing- do you get this?. I’m glad that they aren’t cancerous- do the biopsy always come back clear? Do you have symptoms of under/over at all? I hope you get it sorted.