I am Sophia and I am very young 47 y.o. I have a multi nodule goitre which has been around since I was a teen although I don't know whether there was nodules back then. I have been recommended for a complete thyroidectomy and will have my surgery consultation in a week or so. However, past test thyroid tests have turn up normal despite fatigue, fog memory (thought I was in the early stages of alzheimer's), itchy skin, very severe muscle cramps, sudden and instant eye probes (wear bifocals now), blurred vision, heart palpitations while at rest, sudden disappearance of my periods three years ago without menopausal symptoms, depression and anxiety, agoraphobia and the list goes on and on...
I am a bit concerned about the thyroidectomy because I have been reading different stuff and now don't know what to think. Some literature and threads asserts removal of the thyroid doesn't stop or improve these dreadful symptoms while others states the opposite. I am also concerned about the healing process after thyroidectomy. I will try to share my journey and experience here as it occurs. Any feedback is welcome.
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SophiazWorld
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Can you post your latest thyroid labs on here, with the ranges, so that people can see what's going on? Otherwise, it's just guess work. You sound hypo to me, in which case, removal of the gland would not improve things. You just need thyroid hormone replacement - as you would if your gland was removed. But doctors are very bad at that, so best to learn as much as you can about it, before doing anything. Posting your results on here will help people advise.
I haven't had a thyroidectomy but many members have and will let you know about their experiences.
What I will say - if you decide to go ahead have to asked what thyroid hormone replacement will be provided for you.
The guidelines state that only prescribing levothyroxine is sufficient to be well but many on this forum have found better health with the addition of T3 to T4 (levothyroxine). T4 has to convert to T3 which is the active hormone required in all our receptor cells otherwise we might still have clinical symptoms.
When on the optimal dose of replacement thyroid hormones your clinical symptoms should subside. I would ask that you get an appointment with Moorfields Eye Hospital to assess your eyes as some people can develop Thyroid Eye Disease so you should definitely make an appointment.
If you can get a print-out of your most recent blood test results with the ranges and post on a new question if you don't have them to hand today it will be helpful.
Sorry, but I think it's bunkum. Not only is output dependent on kidney function but the excreted substances aren't T4 or T3 alone, but a collection of products of all sorts. The body is very good at both preserving T4 and T3 and recycles the iodine from breakdown products back to the thyroid to produce more T4 and T3. Also T4 does not fluctuate significantly over the day and T3 only slightly.
Have you had ultrasound or needle biopsies of nodules?
Occasionally and I repeat rarely the nodules can turn non benign and can give unpleasant symptoms.Maybe your specialist is considering thyroidectomy to reduce chance of anything occurring but would think an ultrasound of them at least plus a needle biopsy
( doesn't hurt honest) might give you a better idea or picture of necessity.
My one brother had total thyroidectomy due to horrible symptoms as yours and regrets it as over20 years of changing meds with no real help
I had to have total thyroidectomy due to thyroid cancer and am slightly oversuppressed on levothyroxine but felt better after.
Really need consultant to give you full picture for and against.
Thank you for your feedback Sandy12. My goitre had been barely visible for most of my life, but in the last six years it became enlarged. My endocrinologist says it has grown past my chest bone and can no longer be monitored, hence surgery. I'm not too sure that is a valid enough reason for surgery since it could be monitored via CT or MRI scans. Of course, that may be considered too expensive so, onto the chopping board I go. However, I find the possibility of medication shrinking the goitre and softening and/or eradicating the symptoms encouraging - and offers a better alternative. Outside of the test results showing a cancerous goitre, I plan to suggest these alternatives to my Dr and see what he says. I will let you know.
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Had total thyroidectomy and still feel terrible.
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