RFA treatment for Toxic nodular Goitre

[Celticfiddler]

Hello PurpleNails and everyone else interested in RFA treatment of nodular goitre .

I am not sure that I am updating my post as I should so I think I have started another one so any advice on where I should write this gratefully received.

I had a 3 month follow up at Royal Berkshire Radiology yesterday The consultant had anticipated that I would need another RFA treatment at this point as the nodule I had was so large ( I think64ml) however as my T4 dropped to 12 ( 9-19) by end of Jan and my TSH is now back in range ( lab doesn't give T4 result when TSH in range so I will get a full THYROID screen done myself

he agreed with me to delay any further RFA and will see me in Jan 25 unless I become hyperthyroid again as there is still a lot of tissue in the nodule that he could treat.

A lovely lovely consultant very personable and humane. In fact all my dealings with RBH have been positive despite the overall overloaded feeling there is to the premises !

Thank you for all your support and help to those that helped me find my way to RFA

[Celticfiddler]

Forgot to say that the nodule had reduced by 56% which he thought was ok , I thought it was wonderful. The size of my goitre has gone down a bit

[PurpleNails Administrator]

New post always welcome & likely to be more noticed than updates on older posts.

Thanks for update.

Definitely monitor your FT4 & FT3. TSH isn’t reliable enough to ensure frees are also right level.

The reduction in nodule size sounds good & with over active levels dropping its a good sign the treatment has done the trick.

Often repeat RFA treatments are needed, hopefully the treatment already completed will be enough to resolve the hyper levels.

When I discussed this option with endo specialist recently they didn’t think I’d be a candidate because the treatment is good at reducing nodule size not necessarily hyper levels??? Which I think is not entirely correct given the nodule is what’s over producing & in many cases it can be reduced.

In your last post you mentioned the consultant said your nodule was 3 times over the clinical guidelines for doing RFA.

I’d be interested to know where this information comes from. The NICE guidelines do not specify an upper size limit.

nice.org.uk/guidance/ipg562

I’m glad he agreed to attempt it.

[Celticfiddler in reply to PurpleNails]

Thank you PurpleNails for your reply. I agree with all that you have said. It did seem rather contradictory that he didn't think my hyper active state would change . He was /is a very nice man treated me as an equal and discussed what I wanted and what he could do .

I cannot believe how poor it is that we no longer get T4 results with a basic thyroid blood test. When I was first diagnosed with Hashimotos in 2013 my then GP invited me to have regular blood tests to gauge T4 levels against how I was feeling ( rollercoaster days )

All that has gone and the lab dictates. I would like to write to my Practice Manager and complain about this with some meaty reasons i fyou have anything you could refer me to to use ?

I know there was a big petition going out recently.

warm regards

[PurpleNails Administrator in reply to Celticfiddler]

The trouble is it’s quite well known that FT4 & FT3 are important & why, but it’s more simplistic & cost saving for the NSH to go by TSH alone.

Not that it’s the actual cost of testing as FT4 & FT3 which is quite small but it’s that doctors would have to be able to interpret them and there also the issue that tests showing consistently low T3 would be evidence of the clinical need of T3.

It’s still worth writing to practice manager & asking why lab can overrule GP. It might be the case that if the correct clinical notes are added to instructions to lab they will be tested. For eg “history of hyperthyroidism and non reflective TSH please test FT4 & FT3”

This is why so many use private fingerpick tests.

——

The petition which was running for research from the fine over the T3 price hike - it has finished now.

petition.parliament.uk/peti...

At 10,000 signatures the government responds, which you can read on same link.

[Hugoo]

Hi

Thank you for your post. I have two small hyperactive nodules. I do not want RAI and was thinking of asking for referral for RFA. Can a nodule be too small for this procedure do you think?

Did your GP refer you to the hospital?

Many Thanks

[Celticfiddler in reply to Hugoo]

Hello Hugoo

Your GP can refer you and then you are screened by the consultant at the Royal Berkshire as to whether your nodules are suitable for treatment. I am not sure about the size decision My Gp didn't believe she could refer me so I paid to see a private endocrinologist and asked him to refer me which he did. I have posted some time back about my referral ( if you can find it on here ! )

kind regards and good luck with your journey

[Hugoo in reply to Celticfiddler]

Thank you for your reply. Good wishes.

[PurpleNails Administrator in reply to Hugoo]

Hello hugoo

My GP was also uncomfortable with referring direct to a hospital outside of the area. Having taken nice guidelines & patient leaflet for Berkshire hospital about the procedure with me he said he would look up online.

He decided to submit an “advice & guidance request” to local hospital to see what they advise for referring treatment of this sort. I requested he submit via ENT which I hoped would be more open to referring me but he insisted it must go to endocrinology. Endocrinologist converted it to a referral, and the appointment took months to come through.

The appointment was ok & it was left as they would look into it further but they didn’t think it would treat the hyperthyroid levels. So I’ve to do battle more.

My advice is to collect all the information you can & persist.

Read this post, it has some information links to start your research.

healthunlocked.com/thyroidu...

[Hugoo in reply to PurpleNails]

Thank you for this. I wonder then if it is not suitable for small hot nodules. I can see I will be on Carbimazole for quite a while longer ! Best Wishes.