As above has anyone ever had thyroid lobectomy and what is life like with one thyroid? I am absolutely awful on medication (always seem to get the WORST side effects) I am booked in for surgery and also currently pregnant but now I have been reading horror stories in some thyroid groups I joined on fb so I am not sure I want my thyroid removed unless its cancerous however there is no way to know this unless I have it removed….
Does anyone know what tests can be done to check for cancer other than fna? And what other treatment options may be available to me? I know I need to speak to someone and I am waiting for an appointment with my ENT.
Please help I am really worried and anxious and its driving me insane.
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Aqua_Maria
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Hi, I had a golf ball size adenoma at the time of surgery and didn't know I had a thyroid problem so I wasn't on Levothyroxine. They couldn't get anything from my FNA due to the type of growth so I had surgery, turned out benign. Not sure there's another test for thyroid cancer. Mine was causing a lot of problems so it had to go. I lived normally for two years and felt great before going on levo when my TSH hit 5. The first several years on levo were normal but at some point along the way it seems the rest of my thyroid stopped putting out extra hormone so I switched over to taking T3 with my Levo. I think the nightmarish stuff you read is due to people not having the information they need going into it and also ignorant doctors. Years later I saw another endocrinologist and she said they no longer recommend surgery for noncancerous nodules so perhaps you should get a second opinion. If you feel awful on levo you might need more or a T4/T3 combo.
Apparently my thyroid levels are fine although my left gland is swollen and causes problems such as swallowing etc.
I have had 3 ultrasound scans done and 2 fna’s totalling 5 samples from the nodules but it hasn’t told my ENT if it is cancer or not my last result came back as atypical and the report stated that the cells have “certain characteristics that cancerous cells have”.
What is T3 and T4 are they medication? My ENT has said I won’t need medication and only 15% of patients do for there thyroid function he also said my remaining one will take over and do the job of both but I am a bit sceptical especially after reading other peoples experiences.
My endocrinologist didn't tell me before surgery that I'd need Levo afterwards and the ENT surgeon told me that the other side of my thyroid would pick up the slack and I felt great for two years after the surgery until the slight fatigue started to creep up. I went back to the same endo and that's when he told me my TSH was 5 and I should go on Levo then he told me most people who have a partial need Levo at some point. You should get tested for thyroid peroxidase antibodies and thyroglobulin antibody. If these are high then it could mean you have an autoimmune disease of your thyroid. I'd suggest you get a hold of your actual labs they did on your thyroid to see what they've actually tested and post them here. Doctors are good at saying things look normal when they aren't. If you have sub clinical hypothyroidism or autoimmune disease and they take away half of your thyroid then it may push you into overt hypothyroidism like it did me. However if they can't determine cancer from your FNA and it's causing discomfort then you might want to go with the partial. Mine got so large I was choking and gaining fluid retention and cystic acne. I'm telling you everything I wish they would have told me but they're ignorant to how the thyroid really works. Knowing the TSH, FT4 and FT3 on your labs would be helpful. Levothyroxine(T4) is an inactive hormone that is prescribed. Your body takes that and converts it into active thyroid hormone T3 which your whole body needs. You take it daily. Liothyronine(T3) is the active form of the thyroid hormone and they make this in pill form which can be taken with or without Levothyroxine. Your thyroid produces T4 and some T3. T4 is converted into T3 in the body. Not everyone will need to take T3 with their Levothyroxine.
This is what my surgeon has also told me he stated that 15% of patients go on to need medication after partial removal and he also said my remaining side would take over and do the job of both.
I don’t think there are any concerns with my thyroid bloods at all the only reason they want it out as its suspicious of cancer and it has grown large since it was first found.
It was my GP who did my bloods so I will see if I can get hold of them somehow, I don’t want to jump into surgery and end up feeling really poorly I have it booked for next week but I am slowly changing my mind the only thing that worries me is if I give cancer the opportunity to spread!
No I haven’t had it removed I have booked to have RFA done in Germany as they don’t do it here in the UK well they do but will only perform it on benign and mine is inconclusive and always has been.
In domestic terms, knocking out a thyroid gland (or other tissue) using your microwave oven. Yes - very much more sophisticated.
Abbreviation list in my Vade Mecum might help.
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information.
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
Not everything is in this one document - my major medicines document is still separate!
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Which test does all the ones you have mentioned that I need doing? Including all the vitamin side? I clicked on a link but didn’t know if they did all of them together. Thank you
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