Radiofrequency ablation Thyroid NHS

[Geolan]

Hello, I have written a few posts previously and I am looking for any advice you wise people can offer!

I have a overactive toxic nodule on thyroid, due to having small children I have now been offered surgery rather than RAI. I have asked my consultant about Radiofrequency ablation instead and whether could be transferred to UCLH in London for further assessment of this treatment option, I had also made contact with a consultant in London performing RFA who says I am potentially suitable.

My consultant has declined to refer me to UCLH through NHS stating they don’t have a ‘funding stream’ for this. I’m feeling really deflated and upset after waiting 8 months for my follow up appt to be told that surgery is my only option.

So I’m wondering if anyone has any advice about whether I can take this further to try and get a referral for the RFA treatment? Has anyone had success in being referred to another hospital for treatment? I have spoken to PALS who are looking into.

Many thanks for your help

[PurpleNails Administrator]

I really hope PALS are able to help you.

At the very least I would seek a formal justification of why you were refused a referral and why a “funding stream” can’t be put in place, given that the cost of RFA would be a saving over the cost of surgical removal. So start writing a letter to the hospital!

I also have toxic nodule and previously read about RFA as a possible treatments option too. For me, surgery carries extra risk as I’m obese. My children, although older have special needs and wouldn’t keep at a safe distance. Something the consultant doesn’t seem to grasp.

I haven’t requested a referral with my consultant as of yet, as I know the long distance I would have to travel for assessment, then treatment & follow up is not an option for me.

If you haven’t already read these, I found a few posts on RFA including people who have been referred for treatment. The pertinent point seems they had to collect the relevant information themselves and be persistent on being referred.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

This is the patient information leaflet for UCLH

uclh.nhs.uk/PandV/PIL/Patie...

Best of luck & keep us updated as to how you get on.

[Geolan in reply to PurpleNails]

Thank you for your message PurpleNails, that is really helpful. I’m sorry you are also in a difficult position regarding treatment options and I hope that you also get a good outcome.

I will draft a letter to the hospital requesting some answers, i feel like they are not interested in looking into it, the consultant had not even heard of RFA through NHS. I just wish everything wasn’t such a big battle with the medical profession. Like you say, I would have thought RFA is a cheaper, less complicated option than surgery, not even taking into account the cost of medication after surgery.

Just got to keep going with it I guess!

Thanks so much

[wavingordrowning]

Hi Geolan , Could you please let me know an update on your situation? I am in a very similar situation to you.

Hyper symptoms since having my son in Feb this year. I have been put on carbi 5mg daily. They have tested my anitbodies and all negative. So they now assume based on the ultrasound i have had that one if not more or the nodules i have is toxic. I have not been for the uptake scan as I am worried about having it done. I took an allergic reaction to the CT contrast dye earlier this year. Would like to chat to you further if you want to. Thanks

[Geolan in reply to wavingordrowning]

Hi wavingordrowning thanks for your message, I’ve responded to the private message you sent