Opinion and any advice please

[LupusKaren]

Evening everyone, popped over from Lupus UK, I was guided here by a friend of mine. Just looking for opinion and any advice on the undermentioned please. I have not been diagnosed with any thyroid condition, not on any thyroid meds (lots of meds for my Lupus and APS).

I had a private thyroid scan today, report below.

Both lobes of the thyroid gland and the isthmus appear normal in size.

The right lobe measures 45 x 16 x 13 mm.

The left lobe measures 41 x 13 x 12 mm.

Both lobes of the thyroid gland contain multiple small nodules with no suspicious features.

The right lobe of the thyroid gland contains six nodules; the largest measures 9 x 8 x 5

mm.

The left lobe of the thyroid gland contains three nodules; the largest measures 6 x 5 x

3 mm.

Whilst reassuring that they have been deemed not suspicious, I am suffering with several symptoms, namely:

Pressure in throat

Medication gets stuck

Freezing hands and feet

Sleep problems

Inability to lose weight

Exhausted

Emotional

I should add that I have two auto-immune conditions, Lupus and Antiphosolipid Syndrome, which I know heightens my risk for an auto-immune thyroid problem.

Recent Throat Endodsocopy Normal. Gastro endoscopy x 2 in 18 months, revealed peptic ulcers, esophagitis grade A, Sliding Hiatus Hernia 2 cm. As far as I am aware ulcers and esophagitis healed.

I see my GP who is excellent, and tries to be very accommodating, on Wednesday, is there anything specific I should ask him to do, if anything. With constraints on my local surgery and hospital, any blood tests outside the TSH I know I will have to do privately, which I can do. I have already looked at Blue Horizon.

Thank you very much in advance.

[Jazzw]

Hi Karen - welcome.

Well, the sliding hiatus hernia might be the cause of the pressure on your throat and difficulty swallowing medication. But you’re right, you can’t rule out thyroid issues just because the scan looks normal.

Have you had a TSH done? What was the result? Many doctors are fans of calling the result “normal” when it’s anywhere within a rather large range, when normal is actually around 1.5 for the majority of people with no thyroid issues. So once it rises above 2 it does suggest a thyroid is struggling to keep up with demand.

[LupusKaren in reply to Jazzw]

Jazz thank you for replying and the welcome. No I have not had my TSH checked by my GP, though it has been done by my excellent Rhuematologist, deemed normal, but she has not tested for at least 3 years. I am sure my GP will be willing to test TSH, but I feel a more detailed panel is needed. I am happy to pay for private detailed testing with BH, and to meet me halfway will ask if the practice will do the actual blood draw, so I do have options.

[Jazzw in reply to LupusKaren]

It’s definitely worth asking to be tested, and given the other conditions you have going on, I can’t see why there would be an objection to doing the whole thyroid panel. Sometimes though it’s the lab who refuses to test T3 when TSH is so-called normal - but doctors can overrule that by making sure they put on the request form that FT3 must be tested.

Blue Horizon tests are very good though and you could have TSH, FT3 and FT4 tested for around £40-50 (they regularly have deals on so it’s worth keeping an eye out for coupon codes).

Hope your doctor can help.

[LupusKaren in reply to Jazzw]

Thank you Jazz, you have been very helpful. My GP will accommodate me where he can, this guy has stuck by me for 25 years, all through the very long and miserable 12 years to get a Lupus diagnosis, shocking but not unheard of. I am more savvy these days, and do my homework. BH have a great range of tests, if I do use them, I will have a good panel to include TPO>

[SlowDragon Administrator]

Having other autoimmune diseases makes it more likely to develop other ones

To test for autoimmune thyroid disease it's essential to test TPO and TG thyroid antibodies

Low vitamins are also very common

Very common if TSH is "within range " that NHS refuses to test FT3 or antibodies

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Yes, Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[HughH]

There is a possibility of a genetic thyroid condition, thyroid hormone resistance, which could explain your symptoms. If there are close relations with thyroid or autoimmune conditions this would support this possibility.