why wouldn't the consultant order a scan of a goiter ( I have confirmed Graves Disease?)

[Littlefoot1thyroiduk]

I have a recently confirmed Graves Disease. And also a goiter.

Anyone any insight please as to why the medics won't do a scan of the goiter?

When I asked they said it's because the treatment plan is the same regardless in first instance - ie carbimazole - in hope that stops growth/ balances the hormones and so avoid radioactive iodine treatment / surgery. If all goes to plan - sorted. If not , then next stop the more invasive treatments (to be avoided if at all possible!).

I am surprised they don't do the scan to check there's nothing else lurking like cancer . I had the bowel cancer test that was negative - but nothing for my throat .

A horse voice was what triggered the testing and thyroid finding in the first place / along with identification of silent acid reflux ( LPR) - and my voice is still not good either.

Any thoughts welcome please.

Many thanks

[SlowDragon Administrator]

You could organise your own scan

thyroiduk.org/help-and-supp...

Have you had TPO and TG antibodies tested as well as Trab

[Littlefoot1thyroiduk in reply to SlowDragon]

NO .. ... Trab is definitive for Graves ? .

My understanding:

1. Thyroid peroxidase antibody (TPOAb) test: This test detects the presence of antibodies against the enzyme thyroid peroxidase. Elevated TPOAb levels indicate autoimmune thyroid disease, such as Graves' disease, which is a common cause of hyperthyroidism.

Thought TRAB better test for graves now ?

2.5. Thyroglobulin (Tg) test: This test measures the levels of thyroglobulin, a protein produced by the thyroid gland. Elevated Tg levels may indicate thyroid inflammation or certain types of thyroid cancer, which can present with hyperthyroidism.

So are you thinking TG : cancer check ? If yes how can I get done - private?

Can you have Graves and Cancer?

[Littlefoot1thyroiduk in reply to Littlefoot1thyroiduk]

ps .. where to go for private - . what do i need to ask for .. do i need gp referral

[SlowDragon Administrator in reply to Littlefoot1thyroiduk]

No I wasn’t suggesting testing TG antibodies for cancer

You can have Hashimoto’s and Graves’ disease at the same time.

Hashimoto’s usually diagnosed by high TPO and/or high TG antibodies

Graves’ disease…..can have slight raised TPO or TG antibodies

Most ultrasound clinics don’t require letter of referral

[Littlefoot1thyroiduk]

AHH .. OK ... that I get - MANY THANKS

[Celticfiddler]

Hello Littlefoot Apologies for the delay in replying. I really don't know why they won't do a scan my only idea is that different parts of the country do different things. I have now had three scans of my goiter . The first in 2014 was a radioactive scan to get an indepth picture ( I think !) If I hadn't been so unwell I am not sure I would have agreed to it. Also have had 2 ultrasound scans where they measured the size of the nodules in my goiter. I have a multi nodular toxic goiter which I understand produces its own T4 and hence made me hyperthyroid whereas previously I had been hypo with Hashimoto's confirmed. In the last four years the nodule has grown in size from 4 cm to 5 cm and I am trying to get Radiofrequency ablation . If you look up RFA you will see the thread on here.

It my most recent scan a few weeks back the radiologist was able to say the nodules were benign and she checked my salivary glands and lymph nodes too which was reassuring. I cannot see why you are not having an ultrasound Go in strong and request one ?

[Littlefoot1thyroiduk]

thank you Celticfiddler and SlowDragon.

So being inpatient .. I got my own scan ... all sorted in less than 24 hrs. .. was worth it. Thankfully no nodules and reassured no cancer .... but very inflamed .. as I guess to be expected given Graves diagnosis ( confirmed positive TRAb 4.08 u/l Ref range 0-0.39 U/L ) .

Also got Tg and TPO done 19 June - both normal I think (?) :

- Thyroglobulin Antibody 30.9 IU/mL; ref range - 0-115 ; Method used - Roche Modular

▪ Thyroid Peroxidase Antibodies - <0.9IU/ml ; ref range – 0-34IU/ml ; method used - Roche Modular.

Have sent the reports and images to the consultant and the GP .

My previous blood readings on 24 May :

- TSH still <0.02mlU/L ( so low )

- Free T3 5.4 pmol/L ref range 3.1pmol/L- 6.8pmol/L - normal

-Free T4 23.9pmpl/L ref range 10.8pmol/L - 25.5 pmol/L - normal

So Free T3/4 both come down since been on the meds - carbimazole 0.5mg ( reduced down gradually from 20 mg over the last 3 months ) .

So whist all improving I am clearly not out of the woods - and yet at the last consultant appointment on 24 May she write on her report " today clinically euthyroid' .. and yet at that point she only had blood results for an early 9 May date which were :

- TSH still <0.02mlU/L ( so low )

- Free T3 7.0 pmol/L ref range 3.1pmol/L- 6.8pmol/L ( HIGH) -- Had been higher at 10.4

- Free T4 27.9 9pmpl/L ref range 10.8pmol/L - 25.5 pmol/L

These don't seem to suggest to me - clinically euthyroid ? Why would medic say that when the data doesn't say that? Unless I have misunderstood the data?

My guess is she waited for the bloods from the 24 May ( after I saw her ) and then 3 wks later after my appointment , wrote the report - so reporting / tenses in her report out of synch with the facts at the time! Is this sort of thing common? I have already had to correct an appointment report from another consultant on another matter who referenced I had hypothyrodism - which I don't have ! Doesn't fill me with confidence !

I get another blood test tomorrow as part of the monitoring (am doing at 7am - fasting) - so await to see results . Am guessing that given the scan last week that TSH likely to still be low .. and T3/ 4 probably ok ...or dropped further .... so hoping consultant sees the results and will call me if meds need to be adjusted - to avoid hypo .. ; I see the results long before she does ... so I can always flag to her if I think action needs to be taken .. ( otherwise I don't spk to her until 20 July ... ) . Does this seem like a sensible plan of action? and I will make sure she's looked at that scan/ bloods I got - she has been emailed them anyway. anything else I need to do / flag to medics?

Many thanks

Karen