Help needed please...

[Delirious242]

Hello. I was diagnosed with subclinical hypothyroidism last year and I have been taking Levothyroxine to manage it. I am trying to conceive but tsh levels are still higher than 2. Does anyone know a private endo that I could see as NHS is taking too long to resolve this. I also feel rubbish when I take it but I am forcing myself to take it so I can conceive. Any advice would be great thanks

[SlowDragon Administrator]

How much Levothyroxine are you taking?

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies? Have you had TPO and TG antibodies tested?

What about vitamin D, folate, ferritin and B12 levels?

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

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

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.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 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. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists

[Delirious242 in reply to SlowDragon]

Thank you. Sorry for the late reply.

I’m only on 25mg, haven’t yet been diagnosed with Hashimotos but I’m sure I’ve got it. The right side of my neck is swollen at the moment with pulsing in my ear.

These issues seem to have got worse when I started to try conceiving. I’m being seen on the NHS which is a slow and painful experience and making me lose hope. I’ve decided to see someone privately because I can’t wait for the right support anymore.

My tsh is 7 all other levels seem to be ok last time I checked. Vitamin d fine iron low always has been. But doctors say this could be solved if I take levo.

Is nature throid better?

[SlowDragon Administrator in reply to Delirious242]

Standard starter dose is 50mcgs. So you need an increase

Here's link saying NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

For conception and pregnancy TSH must be under 2.5

If already on Levothyroxine, likely to need it lower than that

Pregnancy links

gp-update.co.uk/files/docs/...

thyroiduk.org.uk/tuk/guidel...

Essential to test folate and B12. Very often too low as result of hypothyroidism

These are essential for a baby's healthy development

Vitamin D and ferritin too

[Delirious242 in reply to SlowDragon]

Thank you!

[SlowDragon Administrator in reply to Delirious242]

Insist GP tests vitamins and thyroid antibodies

Or test privately.

If you have Hashimoto's then likely to benefit from strictly gluten free diet

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)

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

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...

[Delirious242 in reply to SlowDragon]

I’m now on 50mcg but still experiencing extreme stiffness in my neck with a feeling of swelling in the same place. It doesn’t hurt but is just very uncomfortable. I’ve asked for full set of tests including thyroid antibodies. I have not been diagnosed with hashi but are these symptoms? Or is it worse? Like nodes etc

I recently saw a private endo who upped the meds but what now? I feel so stressed wth all this back and forth.