Advice required nodules found & being referred to Endocrinologist

Hi I would be grateful for some advice please I saw doctor today & got results of scan. She said I have a large left nodule & smaller one on right side and as it's affecting my voice being hoarse she is referring me to an endocrinologist first but said it might be necessary to remove it. Has anyone had experience of this & what usually happens next. My blood results are normal but my anti-thyroglobulin abs are raised 599.0 (<115 KU/L). My reverse T3 28.0 (10-24 Ng/dl) & reverse T3 11.28 (low <12).

My serum folate is low 3.41 (8.83-60.8 nmol/L) and blue horizon said I have sufficient for about 4 months & to discuss with doctor. I raised this today & she said it's only a problem if my blood count was an issue and it's not so this can be ignored- is this right? Vitamin B12 is good 281 Pmol/L

As I have private medical insurance she told me to find a consultant myself - can anyone recommend a good one in the London/Hertfordshire area? Sorry for all these questions just feeling a bit worried about everything & hoping the nodules will be benign and nothing to worry about.

Thank you in advance for your help

12 Replies

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  • You appear to have given two results for rT3. Should one of them be FT3? Did you not have TSH and FT4 tested? It's best to give all the results you've got, because your doctor's opinion of them may not be the same as ours.

    For example, your B12 is decidedly not good at 281. Anything under 500 can cause neurological damage. The best thing for you to do would be to supplement with sublingual methylcobalamin (B12) together with a B complex containing at least 400 mcg methylfolate to bring your folate up. Because your doctor is talking gobbledegook!

    Did you get your vit D and ferritin tested? Because they could be low, too.

  • Hi grey goose sorry here are all results my tsh is 0.61 (0.27-4.20 mIU/L) and T4 total is 92.5 (64.5-142.0), free T4 16.95 (12-22 pmol/L), free T3 4.85 (3.1-6.8 pmol/L), reverse T3 28.0 (10-24) and reverse T3 ratio 11.28 (low <12)

    I've already been supplementing vitamin D and this is now 60 and ferritin 75.4 ug/L

    Thanks for advice I will look at supplementing them. I have also started gluten free diet. Can anything reverse the nodules so they decrease in size?

  • I've never heard of anyone managing to reduce the size of their nodules, no.

    Both your Frees are below mid range, but you don't seem to be too bad at converting T4 to FT3, which is surprising, given the high rT3. Do you have any sort of infection? Or are you on a drastic diet or anything?

  • My diet is normal apart from now going gluten free but I'm still eating normally. I was taking estrogen & testosterone for another condition but they made me feel worse so I've stopped taking them could this affect the readings?

  • I don't think that would affect the readings, but I wouldn't swear to it.

  • Hi grey goose I've had a look for the sublingual methylcobalamin (B12) what dose would you recommend as they say 500, 1000 or even 5000 mcg thanks

  • With such a low B12, I would say 5000 mcg for a couple of months, and then reduce to 1000.

  • When I get a hoarse voice it's because I'm undermedicated so that may be the problem for you. Try not to worry about the nodules, they are quite common and mostly benign and are only a problem if pressing on something else making swallowing difficult or breathing. An endocrinologist will do a scan which is easy to do and only takes a few minutes once you are lying in the best position. I had one which was quite large and I was given an FNA-fine needle aspiration. They took out a lot of fluid but it was fine and it didn't fill up again either! It didn't really hurt having it done, just a case of keeping as still as you can. It seems to take a long time as it's a slow process getting the fluid out only because it's a fine needle. But they may not even need to do that. My next scan was just routine with a new endo and no problems.

  • Thanks silverfox7 that's made me feel relieved! I guess I will have to wait to see the consultant & see what they say. Is there a way to find a good endocrinologist as so many people on the forum seem to get no help from theirs so would be pleased for a recommendation of a good one!

  • Gstclair,

    If your nodule is >1.5cm your endocrinologist will probably arrange a fine needles aspiration (FNA) biopsy to check the nodule is not malignant. 95% of thyroid nodules are benign. If the result is malignant the thyroid lobe or perhaps entire thyroid gland will be removed but if it is benign the nodule will only be removed if it is impacting nearby organs.

    Your TSH, FT4 and FT3 levels are euthyroid (normal) apart from elevated rT3 which can be due to illness at the time of testing.

    I had an inconclusive FNA result but it wasn't repeated as a hemilobectomy to remove the nodule which was causing breathing and swallowing difficulty by compressing the trachea was arranged. Histopathology of the tumour proved to be malignant so I had completion thyroidectomy 3 months later.

    Email louise.warvill@thyroiduk.org.uk for a member recommended list of endocrinologists.

  • Thank you clutter for your reply and info. I just collected the referral letter and the results of the scan say there is a 45mm x 27mm mixed echo nodule on left lobe of the thyroid and it has central cystic area within it. In the right lobe there is a small 5mm mixed echo nodule seen. Conclusion - large heterogeneous mixed echo nodule with central cystic area seen in left lobe of thyroid.

    I bet you was pleased they removed it in the end as it was malignant- did this relieve your symptoms as well?

    It's strange regarding possible infection as I had a full blood count in November saying white cells slightly raised suggesting presence of infection and then had the thyroid tests in December but don't feel ill! My iron was also raised 29.7 but have normal transferrin at 55. Something weird is going on.

    Thanks for email address I will ask for list & take it from there. Your help is greatly appreciated 😄

  • Gstclair,

    Other than eased swallowing, breathing and being able to lie down flat without choking there was no improvement in symptoms after the hemilobectomy. I was told symptoms were non-thyroidal because thyroid levels were unequivocally euthyroid although thyroid peroxidase antibodies were elevated. My doctors were adamant that having autoimmune thyroiditis (Hashimoto's) did not cause symptoms unless hypothyroid which is a crock! After completion thyroidectomy symptoms improved quickly so I'm convinced the doctors were wrong.

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