I have been found to have a 2 cm by 1 cm growth in the top of the isthmus of my thyroid lots of unremarkable nodules throughout left and right of thyroid .
I had a FNA which came back benign thankfully but this is causing swallow choke issues and speech is croaky . I think they intend watching and waiting but with the mechanical problems that makes me feel surely it will only get worse . Would appreciate hearing from anyone that’s been here and could tell me there story .
I also have adrenal insufficiency going through tests presently but using HC and FC presently I have auto immune conditions but have been told I don’t have Hasimotos …
thoughts ?
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Christie22
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You might want to find out about radio frequency ablation (RFA) for nodules. facebook.com/groups/saveyou... Check the files for "worldwide doctors". There appear to be a few listed in the UK.
The founder of the FB group gave presentations at this year's ThyCa conference. This is a video of the presentation youtu.be/VvR_UAHD0tg.
At least in the US, RFA is being done only on benign nodules.
Most nodules are caused by over or under active thyroid and a very few by cancer cells which you say has been eliminated anyway.
If you have thyroid nodules, A.I. and other autoimmune conditions, the chances are you have Hashimotos. Antibodies wax and wane and even run out if the immune system (WBC’s) become depleted after years of elevation. Conventional medicine also only tests for TPOAb’s where as TGAb’s can be equally responsible.
I could hardly speak before diagnosis as my voice was so hoarse, accompanied by a dry raspy cough. These symptoms immediately improved and my multi nodular goitre shank after being medicated on Levothyroxine.
If I were you I wouldn’t consider surgery until thyroid hormone FT3 & FT4 have been shown to be optimal. Also adequate iron and nutrients as its possible to have enough thyroid hormone that can't work effectively without its essential cofactors.
SlowDragon has already provided you with some great resources above.
I have a >5cm thyroid nodule, its grown largely over isthmus but from the left lobe.
Like you I had a benign FNA & was told function ok, but found out months later the thyroid function results hadn’t been tested. The other blood test results were “in range” hence admin saying all ok - no further action, file away & close. No one noticed the missing results. I returned and once tested was diagnosed with hyper levels. Turns out had had abnormal reading years before but it was missed.
What was your antibodies level & function results. You may not have had a full test, & if it’s just in range is may indicate an issue the doctors dismiss it as it’s in range.
Ear nose & throat - ENT doctors look at issues from a does this need surgery viewpoint & they won’t be looking at function. They will trust that GP will check levels and treat or refer you to endocrinology if there is a (separate) function issue.
Radio frequency ablation target the nodule & less invasive than surgery. - Its offered at 2 hospitals in UK, London & Berkshire. Most areas often deny it is a potential option and refuse referrals saying for example there is no funding stream for it. Patients have had to battle for referral after provide the information themselves.
I was told by ENT that I had benign nodules for years as I suffered with swallowing and a constant sensation of having something stuck in my throat and random panic attacks (thyroid levels were always normal) … eventually after years these 3 issues became vicious that I started having a bizarre eye popping experience I was sent to Endo at this point and was diagnosed with thyroid cancer after FNB (not suggesting you have thyroid cancer) but a visit to Endocrinologist might be something you want to pursue instead of ENT …. The Endo told me I should have always been referred to his department not ENT and I definitely agree with this I suffered a very long time feeling like my issues were normal and they weren’t.
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