RFA treatment : it is very good to read that the... - Thyroid UK

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RFA treatment

Yellowpepper13 profile image
14 Replies

it is very good to read that the RFA at the Berkshire is real. After fighting my surgeon against surgery, I managed to have a GP referral. Any idea what kind of timing I have to expect for an answer?

Do you have the name of the doctor/consultant expert and performing the RFA at the Berkshire?

I was considering having the treatment done in Italy, but I was put off by the follow ups that need to be done always there.

#rfa #tyroid #nodule

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Yellowpepper13 profile image
Yellowpepper13
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14 Replies
TiggerMe profile image
TiggerMeAmbassador

Hopefully this is helpful...

royalberkshire.nhs.uk/leafl...

Me2U profile image
Me2U

RFA?

PurpleNails profile image
PurpleNailsAdministrator in reply toMe2U

Radio frequency ablation

Me2U profile image
Me2U in reply toPurpleNails

Thank youl !🤗

SilverAvocado profile image
SilverAvocado

Is there any evidence from elsewhere that this treatment is less likely to result in needing thyroid hormone replacement than surgery?

They claim it in this leaflet, but I always think things like this should be taken with a pinch of salt. They always make it sound like the treatment pathway will be simple, with loads of transparency and aftercare, but usually it doesn't turn out that way.

In general my advice to anyone considering a nodule being removed would be to weigh up the symptoms caused by the nodule against the symptoms expected once on (life long) thyroid hormone replacement. Doctors can be treatment happy with nodules, as they like these more dramatic one-off interventions, but will likely go very quiet once you need your thyroid hormone dose adjusted or if you have a very bad outcome.

Yellowpepper13 profile image
Yellowpepper13 in reply toSilverAvocado

In my case I don’t take any medication and I don’t have any symptoms (just a 9cm nodules pushing my trachea) so removing half of my thyroid will give me high chances to go on medication all my life. In my case the preference for rfa is very straightforward and really I don’t understand why they don’t even offer it as an option (in UK of course, because abroad the scenario is different).

Brightness14 profile image
Brightness14

I had the same back in 2015 a nodule had moved my trachea. It causes some breathing problems too. My thyroid was still working perfectly and I had never had any thyroid problems. My thyroid was removed here in France by a professor surgeon. I never had any problems with it since.

Before I moved to France I was living in the UK and my trachea moved in Nov 2014 but nothing was ever done about it. I was expected to live a half life, no swimming, walking or Yoga and no help either. Good Luck with your new procedure.

PurpleNails profile image
PurpleNailsAdministrator

I was told me my nodule (5cm) was all ok - no further action, and although it was benign, drs missed off the right test & / or missed abnormal results leaving me hyperthyroid for many years.

Do you have full testing results? TSH, FT3, FT3. what thyroid antibodies have been tested?

Have you had scans, ultrasound / uptake scans? What do the reports say? You be surprised what gets overlooked.

Keep us posted on how quick your referral gets arranged.

Yellowpepper13 profile image
Yellowpepper13 in reply toPurpleNails

I had tests done every year (for the last 12 years) and the last in july. I have high Hashimoto antibodies but not a concern now. Neck scan and CT just performed. I need a biopsy if I go for RFA. We called the hospital today. The waiting list doesn’t sound terrible, at least compared with what we have to deal at the London hospitals. Finger crossed I should hear back in a couple of weeks

PurpleNails profile image
PurpleNailsAdministrator in reply toYellowpepper13

Has dr explained what having antibodies means?

Yellowpepper13 profile image
Yellowpepper13 in reply toPurpleNails

Well, they told me that the over production is quiet for the moment but as any autoimmune condition, they can decide to attack any moment or never.

PurpleNails profile image
PurpleNailsAdministrator in reply toYellowpepper13

That’s not entirely accurate. There is no over production. The thyroid is not over stimulated & there is no method to predict past / future production. Although there are specialist scan which can snap shot function levels of thyroid.

With autoimmune the immune systems attacks thyroid & the damage to thyroid cell causes the stored hormone to release. This is why level can elevate for a transient period. The damage is permanent & the remaining working thyroid can sometimes compensate for some time but over time it’s likely levels will drop.

The antibodies are clearing up the substances which circulating outside of thyroid & shouldn’t be. This is what shows autoimmune activity has taken place. Antibodies could rise or lower in future but having positive levels confirms autoimmune thyroiditis ( Hashimoto’s)

It’s just that doctors do not know how to manage the autoimmune aspect and wait until levels are abnormal to treat them.

Yellowpepper13 profile image
Yellowpepper13 in reply toPurpleNails

In your opinion should I already be on medication although my levels are normal? I am still very confused as I have symptoms of Hypothyroidism, but still I am not medicated.🤦🏼‍♀️

PurpleNails profile image
PurpleNailsAdministrator in reply toYellowpepper13

Would depend on your thyroid function results. 2 above range TSH 3months apart - (or 1 above 10) means you should be on replacement. If FT4 & FT3 are under range replacement also necessary.

Especially with positive antibodies which is evidence of damage has / will likely continue to occur.

drs don’t look to treat until results become abnormal unfortunately, but symtoms entirely possible before reaching that stage.

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