hi has anyone had either of these procedures for thyroid nodules at all?
I understand that there are a few centres around the country now offering this as a treatment.
This morning I had an uptake scan of my thyroid which is showing likely 2 nodules, the picture was not very clear as I had been on Amiodorone for a year which I stopped in October 24. So the thyroid is still full of iodine. Prior to this I had been diagnosed with sub clinical hyperthyroidism and with the added heart drug I have been treated for the last year with a low dose of carbimazole.
The Dr I saw in nuclear medicine was keen for me to have radioactive iodine treatment when things settle and I told him I really was not keen. I have been happily tolerating the carbimazole and see no point in making myself hypo and having to take other medicine, alongside all the problems that seems to entail.
As it is I have a reprieve of 6 months whilst the rest of the heart drug dissipates. I can also discuss options with my endocrinologist when I see him in a few months.
Just to add neither of them seem to know anything about this procedure that’s being offered around the country, which I struggle to understand as it’s approved by NICE.
I would just like any info / experiences or research anyone might have about these procedures so I am armed with info when I next see the endo
Many thanksj
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Torquaygirl
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I had Radioactive Iodine 1-31 for ablation of tumour remnants after they removed a huge thyroid cancer. I really had no option. The tumour remnants lit up like Christmas trees on the nuclear scan.
I wasn’t happy though at many aspects of my treatment and I had to sign consent which listed another primary cancer as a ‘possible’ side effect.
I’m not sure if I’d have it for Graves / Hyperthyroidism - although it’s a smaller dose
It’s a case of benefit versus risk and my opinion is that you have to weigh things up very carefully. I’m surprised that your Nuclear Med doctor is pro RAI. In my experience it’s disappearing as follow up for thyroid cancer unless, as in my case, patients are high risk. Things may be different in cases like yours though.
As an aside, I have chronic pain which Pain Management in my area are convinced is related to the high dose I had.
It’s a controversial subject and I wish you well on this journey.
As for the cancer link Elaine Moore's writes of this way back in 2003 in her first book - elaine-moore.com -
You may find Elaine's website down as she is currently dealing with this issue - though we can access through an archive link - web.archive.org/web/2024120...
I just find it unbelievable that this treatment option is still encouraged in what we understand to be a health care setting -
I'm with Graves post RAI thyroid ablation 2005 when I knew nothing and simply trusted the mainstream medical white coats and now have to self medicate and buy my own thyroid hormone replacement as I refused all other treatment options back in 2018.
Routinely the NHS prescribe T4 - Levothyroxine - and you need to assessed by endocrinology as a new patient, as to your need for either T3 or NDT.
Natural Desiccated Thyroid - the most expensive treatment option has now been Blacklisted for new patients - and obtaining T3 has become something of a post code lottery due to ICB restrictions and hospital constraint and some endo's working to financial restraints rather than medical need.
At around the turn of the century 2000 your doctor had the option of treating you with any treatment option should the cheapest option not fully restore health and well being -
Sub-clinical hyperthyroidism suggests your thyroid levels (FT4 & FT3) are “in range” while your TSH has dropped.
A low dose of carbimazole works by lowering what the thyroid can put out, so although your FT4 & FT4 are in range the levels have been lowered so the TSH can rise.
The issue with this approach is that the TSH isn’t always reliable. Do you have recent FT4 & FT3 results? What carbimazole dose did you start on / currently taking ?
Amiodorone Is know to cause hyper because of iodine content, this seems to trigger thyroid autoimmune issues. Nodules can hyper function separate to autoimmune but they do often occur together. What thyroid antibodies have been tested?
TPO, TG, TSI & TRab are different forms of thyroid antibodies.
The less invasive options specifically treating nodule are available at few centres.
Several report hospital specialists denying it is a potential option and refusing referrals saying for example “there is no funding stream for it”. I do some who have battle for referral after providing the information & polite persisting. GPs can also refer but often say they can only refer to local hospital specialist & they can refer if suitable.
I’m told 2 Biopsies 3 months apart are required. Then the procedure appointment - then likely need additional follow up. So you likely would need means to travel several times.
Thyroid nodule/s must be benign & not overgrown ie not restosternal / behind collar bone. Larger nodules/swelling need repeated treatments. The treatment can be effective at reducing nodule volume but drs are extremely cautious at portraying effective outcome to reduce hyper activity. It’s likely to reduce but may not permanently resolve over activity.
Most who have posted about having the procedure (links below) have had successful outcome.
I know of a poster who had adverse reaction to the way the local anaesthetic was administered.
Complications are fewer compared to surgery although the preservation of thyroid function on balance is far better with RFA. It can be performed on multiple nodules but if there’s a high chance of reoccurrence - with multiple nodular conditions doctors often suggest it’s not best solution.
Since taking the heart pill I know my t3 levels have risen and my last blood test was showing I was heading into hyper. But I don’t have the figures as it was after I had seen Endo and he just wrote to tell me I was going hyper and to have another blood test in 3 weeks.
It’s all very complicated
But I am hoping that things will settle once the iodine is out of the thyroid and for the minute I can stay on low dose carbimazole. With a bit of luck I may eventually be able to stop that.
Apologies for several replies. Something very odd is occurring when trying to paste in reply. So have split it up as so long. Still can’t seem to paste final part, this was about private clinics.
Well update scans I usually quite conclusive from the distinct patterns visible on the image if there's a concentration of uptake showing nodules that's a strong sign you have a toxic nodule
doctors are moving to RAI early on as nodules tend not to resolve or go into remission as is the hope when autoimmune is involved
Be sure to to obtain every scan report and blood test result. Being informed so you have the information to advocate for yourself and ensure your treatment is kept on track
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Thyroid Nodules
thyroid nodules... terrified :(
Thyroid Nodules
