Multinodular goitre

[Hayl7799]

Hi- I was told I was hypothyroid about a year ago. (Probably Hashimoto as I’ve a family history and bloods showed antibodies). On a follow up appt (6mths ago) I was told I should stop taking levothyroxine but last week was advised I should take again and consultant was surprised at previous advice. Recent bloods showed high t4, low vitamin d and low folate. The consultant also said I have a multinodular goitre (which is a little painful) and I’ve been booked in for an ultrasound. Just wondered if anyone had had similar experiences? I’ve lots of incidental symptoms (aching, dizziness, painful joints, brain fog) though not clear if they’re related to thyroid? Could be just I’m a bit dizzy and slow! 😂 Also, if anyone has been through the same did they find their thyroid painful and did you have to have more investigation or does the ultrasound tend to show what the doctor needs? Would be grateful for any advice/ reassurance that things get better! 😕 Thanks in advance.

[SlowDragon Administrator]

Low vitamins are extremely common as result of being hypothyroid

Aching is often low vitamin D, dizziness low B12.

Have you got any test results and ranges

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Private tests are available

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

[Samy3 in reply to SlowDragon]

Hi hay I have graves disease and a goiter with no noudles that's what they told me two years ago when they did scan but yes I had and still have pain in my thyroid area where I have goiter

[Hayl7799]

Thanks for the responses. My first blood test did show antibodies but my latest doesn’t seem to have tested for them. Got tsh and t4 mixed up in my post. Latest bloods show tsh at 5.69(0.27-4.20), free t4 13.0 (9.0-26.0), folate 3.3 (3.9-26.8) and vitamin d 14 (>50). Been recommended 50mcg Levothyroxine as well as folate and vit d supplement. Painful thyroid is a new thing for me, but is worrying. I have a scan booked for beg if April. x

[SlowDragon Administrator in reply to Hayl7799]

Your vitamin D was extremely low. Presumably now on high loading dose

Folate also very low

What about B12? This is often too low as well. Supplementing folate can exacerbate low B12

Do you have any symptoms of low B12?

b12deficiency.info/signs-an...

What about ferritin, has this been tested?

NHS rarely test antibodies more than once

So you have been started on 50mcg Levothyroxine Bloods should be retested after 6 weeks

Dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first before trying

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Hayl7799 in reply to SlowDragon]

Thanks for the advice . No, ferritin not tested and my next with endo is 6 months. Not started pills yet as haven't been to my gp. Got the results on fri and now have a bug. ☹️ have been advised 50 levo as well as vitamin d supplement and folate dependent on retest and if still low. Was contemplating going gluten free- I'll ask about it when I see the doc. Thanks again.

[SlowDragon Administrator in reply to Hayl7799]

Ask for coeliac blood test but don’t be surprised if GP is unaware of link or dismissive of gut and gluten issues with autoimmune thyroid disease (they don’t call it Hashimoto’s)

Request GP tests ferritin too, especially if you have heavy periods.

And B12 test if not already been done. B12 should always be tested before starting folate supplements