Questions to ask consultant

[Michaela_l]

Hi, so previously my TSH has been raised, around 22, 26 now 8 since being on 25mcg of levothyroxin. Previously my ft4 has been normal, and now it's normal to high again (21).

I am still getting some sinus tachycardia after eating, blurred vision, tinnitus, the feeling that I'm going to lose consciousness and just not feeling ok in my head. I have a bit more energy but still not great. It's horrible..

I was due to see the endocrinology consultant in July, which I wasn't happy about..it's now been brought forward to next Monday.

What should I be asking the consultant? Endocrinology seems such a pain, they just go on bloods but my symptoms are similar to someone who has low thyroxin...feel lost again. I would like to return to work.

Thanks

[SlowDragon Ambassador]

Why on earth are you on such a tiny dose of Levothyroxine. Standard starter dose is 50mcgs

Why has GP not increased dose?

TSH should be around one and FT4 towards top of range and FT3 at least half way in range when on Levothyroxine

As you have Hashimoto's, (autoimmune thyroid disease) diagnosed by high thyroid antibodies essential to test vitamin D, folate, ferritin and B12 and coeliac blood test too if not been done

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

[Michaela_l in reply to SlowDragon]

B12 is normal, will check the others. Thank you ..also it was the consultant who put me on 25mcg.

[Angel_of_the_North in reply to Michaela_l]

Normal is an opinion, not a number. B12 needs to be over 500 to avoid neurological problems.

[Michaela_l in reply to Angel_of_the_North]

Thank you

[greygoose]

It's not the T4 that causes symptoms. It's T3 - which they won't even test! I could be that even though your FT4 is high, you are not converting it to T3, so your FT3 will be low and causing symptoms. You can rarely get the NHS to test FT3, so if you can, it would be a good idea to privately test FT4 and FT3 together, to see how well you're converting.

[Michaela_l in reply to greygoose]

Thanks..I'll discuss this with the consultant on Monday

[SlowDragon Ambassador in reply to Michaela_l]

Absolutely essential to test FT3 at same time as FT4 and TSH to see if you are converting well or not.

B12 needs to be top of range for most. Often it's right at bottom of range.

Folate similar

Ferritin at least half way in range

As you have autoimmune thyroid disease it's pretty likely you have low vitamin D

hypothyroidmom.com/92-of-ha...

Also gluten intolerance is extremely common.

But don't be surprised if endo is completely disinterested in vitamin levels and dismisses gluten intolerance as mumbo-jumbo. (They don't have a test for gluten intolerance, so don't like to consider it)

If you are lucky, they might test for coeliac.

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)

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

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

You could ask about DIO2 gene test. It's not available on NHS in most regions yet. (Is in Kent) So it's highly unlikely they will even acknowledge it is relevant

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

[Michaela_l in reply to SlowDragon]

Thank you...also I believe I was given gluten free milk as a baby due to a bowel resection. So..there could be an issue there.