I had a hemi last year due to a u3 thy3f nodule in a retrosternal multinodular goiter. I have u2 nodules on the remaining side. The results were unclear due to the nodule colapsing so I have to have another us after a year.
Pre hemi my results were always 0.9. The first test after were 3.23 with tiredness and pins and needles. So I was put on 25 of levothyroxine. I was tested again and my results were 1.75 same symptoms. At that point I had just had another surgery so I waited a month to see if symptoms improved. When they didn't I was increased to 50. I have just been tested again and my results are now 1.84.
My b12 is also not great and I was told to start taking folic acid last time that was checked. It's being rechecked in september.
Any idea why my levels aren't going down on the higher dose of levothyroxine?
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dylantt
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The nodule was hypoechoic and heterogeneous with hyperechoic flecks. So no idea really of it was fluid filled. The other nodule they tested was hyperplastic.
I'm in my 30's with moderate asthma, severe ILO and meneires. But the ILO improved as soon as I had the hemi, which no one was expecting.
That is a concern. The TSH isn’t a thyroid hormone, it a pituitary hormone which IF working normally AND unaffected by other factors - decreases when thyroid levels are high and increases if low.
Doctors often think if TSH in range so must thyroid hormones but that’s not always the case. Factors disrupt the feedback loop so you need to know FT4 & FT3.
If we don’t have FT4 (Thyroxine) & FT3 (Triiodothyronine) it’s very difficult to confirm what are your levels & where you feel well. ie compare pre & post operation results.
You might have felt better with standard stating dose, focus on next step. Retest once taken new dose for 6 weeks.
The growth of the thyroid is what necessitated the surgery. There was likely causing a great deal of compression - makes perfect sense to me It would improve (Inducible laryngeal obstruction) ILO. Doctors are too quick to say everything is unrelated.
Low thyroid hormones can also cause low nutrients (which worsens thyroid levels, in a vicious circle)
Were ferritin, & vitamin D tested?
If B12 and folate advice is often to take a b complex with Methylfolate the active version (folic - synthetic version). Hopefully those more knowledgeable will come & advise.
If Doctor or labs won’t test in full - arrange private test . Order a kit - complete a finger prick sample send via post. Test early in week to avoid weekend & not during hot weather.
Some of the kits include thyroid function & nutrients & if you’ve never had them tested thyroid antibodies (TPO & TG antibodies) might be a good idea. Nodules can occur without autoimmune but can often occur with them.
Always test early in morning, fast overnight, delay dose until after draw. Leave off biotin supplements week before (can interfere with testing) - Is this how you test?
my gps pretty good. If I ask for the test he'll probably do it. If not I have an endo appointment next month anyway.
The antibody test I've had. Endo did it he said he wouldn't normally but since I was there he would test. I wasn't told the results but he said if it was ok I wouldn't.
The endo appointment I have is one that I don't need anymore and just haven't cancled. My goiter was picked up on a ct scan and I was refered to him. He said it was fine and I could take the radioactive pill. I turned that down and he said he would make an appointment in the future to discuss it again, but he wouldn't do an ultrasound then or at any point in the future. The same week I had that appointment I had a us on my neck requested by my gp for something else. She picked up the nodule and recomended a ENT referal. Gp mentioned it but said since I had already seen endo it was under control. I read the report by chance 6 months later and asked for a ENT referal and ended up with a FNA and a hemi.
So if I go to the appointment I'll have to say sorry I side stepped you, went to ENT but can you look at these results
That’s because ENT only deal with physical issues from is this a surgical issue viewpoint and have no involvement in function.
Endocrinology just look at blood test results and thyroid function levels & treat them. They will likely have no interest in monitoring hypothyroid and will say GP can manage this.
Usually RAI is normally suggested if you are hyperthyroid. If normal function it’s would have little shrinkage on nodules just the surrounding thyroid. I would have turned it down too. I do have a hyper nodule & prefer medication to RAI. I would likely have to battle for surgery.
I recommend you get copies of all results & ultrasound reports. Online copies of printed copies with ranges.
Which thyroid antibodies were tested & what were results?
I have the results of everything my gps has requested because they go on to the app fpr me to look at. So I have the neck us and all the tsh results. I have the FNA results in a letter because ENT wrote to my gp when the results came back as a thy3f to say he recomended a diagnostic hemi.
The only results I don't have are the endos antibody results. I don't know which ones he tested for just that I would be contacted if they results weren't ok.
Endo said that the RAI would shrink the nodules but make me hypothyroid. He wouldn't recomend surgery because in his opinion it was too invasive. It just never sat right with me.
Depends on the nodules function, if they were non functioning. The shrinkage might be next to zero. & if any part a fluid component that wouldn’t shrink either.
The thyroid itself would shrink and lose function and that might allow the size of nodules to be less noticeable.
I think you went right route. Doctors tend to recommend RAI as it very easily administered, & cost effective.
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