First consultation tomorrow, what to ask please?

Hello, I'm new here and have my first consultant appointment tomorrow at Winchester Hospital and I'm hoping for some tips on what questions I should ask.

Two years ago I had a CT scan and FNA on a 3cm thyroid but had no symptoms (old job had private medical insurance so GP was very keen to investigate).

My TSH was then 0.44, Parathyroid low @ 1.1 (range 1.3 - 9.3) and calcium @ 2.26 (2.15-2.6)

I'm mid forties and until last Christmas had been a size eight (but short) and very active doing sports (sprinting, mountain biking) most days.

I then had a cough and ear ache for seven months, gained a stone and a half, became very tired and wheezy.

I had a painful ultrasound this summer showing 3.8cm solid nodule where the cyst was and more goiter around the windpipe (nothing in lymph glands).

My TSH is now 1 (0.35-4.5) and recently had a couple of 2 week period cycles (oestradiol 118), so am now perimenopausal.

I did have an ovarian cyst 26 years ago and an under-active thyroid when pregnant 24 years ago.

I feel horrible, what do you think I should ask and what can expect tomorrow?

5 Replies

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  • Welcome to the forum, Bridgets.

    Take the CT & ultrasound scan and FNA results with you to the consultation. I think you should ask whether a repeat FNA on the nodule can be done and whether the goiter is likely to damage your vocal chords.

    You should ask for FT4, FT3, thyroid peroxidase and thyroglobulin antibodies to be tested.

    TSH 1.0 is usually ideal and nowhere near the level >5 required for a hypothyroid diagnosis. TSH is only a measure of pituitary output however, which is why the thyroid hormones FT4 and FT3 need to be tested. Diagnoses of secondary hypothyroidism are often missed when TSH only is tested.

    Thyroid peroxidase and thyroglobulin antibodies rule out or confirm autoimmune thyroid disease (Hashimoto's).

    Low ferritin, vitamin D, B12 and folate can cause musculoskeletal pain, fatigue and low mood so it's worth asking your GP or endo to check these too as the symptoms are similar to hypothyroid symptoms.

    thyroiduk.org.uk/tuk/diagno...

  • Thank you Clutter, I really appreciate your advice and help.

    I've been reading lots on this website.

    The hospital doctor conferred with the consultant and they've given me 150mcg of levothyroxine sodium a day to reduce the compression.

    Hopefully this will make my thyroid shrink and I won't need an op.

    I'm to go back in six months for another consultation and blood tests. Then in a year for another ultrasound.

    They think I may have had viral thyroiditis and are not sure why my TSH is normal but I have symptoms. They would have preferred that further blood tests had been done.

    Do you think this will work? I've had an awful year and want to be able to not just go to work and come home for a lay down.

    Many Thanks Again, Bridget

  • Hello Again,

    Please can you let me know if the thyroxine will just until my goitre shrinks or if it will be a permanent medication?

    The hospital doctor looked at the two year old CT scan.

    Would it be better for me to try diet changes first or pay to have full blood tests?

    I'm not keen to take the tablets whilst waiting for the full blood tests in six months.

    Thank you

  • Bridget, 150mcg is a high dose to start on. It might be better to start on 100mcg and increase 25mcg every 4 weeks and then ask your GP to do a thyroid blood test including FT4 and FT3 eight weeks after you started Levothyroxine. Six months is far too long to wait for a blood test but make sure you have one a couple of weeks before the next consultation.

    I don't think Levothyroxine is prescribed for viral thyroiditis so if it's been prescribed for primary hypothyroidism it is normally a lifelong condition requiring daily Levothyroxine hormone replacement.

    Gluten-free diet helps some autoimmune thyroid patients (Hashimoto's). Thyroid peroxidase and thyroglobulin antibody tests determine this. Your GP can order these tests.

    Take your Levothyroxine with a full glass of water on an empty stomach one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from calcium, iron and oestrogen.

  • Thank you Clutter, you're so kind to educate me on this.

    The tablets are 3 x 50mcg, a day so I'll do 100mcg a day for a month.

    Then on the 30th I'm having a Groupon health check which includes thyroid (probably just TSH) and bone scan - doing this because my mum and brother have parathyroid disorders (mum only 65 with severe osteoporosis).

    I saw a friend tonight who had Graves (total thyroidectomy now 175mcg) and she's told me how to watch out for being hyper - especially the tremor - quitting coffee and gluten tomorrow.

    I'll then go up to the 150mcg in November and ask the GP for a full thyroid test in December.

    The ultrasound person and GP both thought I'd have an operation so was surprised by the thyroxine.

    Thanks Again, Bridget

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