Hashimoto/no thyroid question: I was diagnosed by... - Thyroid UK

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Hashimoto/no thyroid question

Feja profile image
Feja

I was diagnosed by a GP with an under active thyroid and nodule 12 years ago. The diagnosis changed to Hashimotos when I saw an endocrinologist 5 years later. For the most part, my thyroid was controlled and I was on the whole symptom free

2 years ago in the spring, during my routine scan of my nodule it was discovered my entire thyroid gland had totally disappeared.

That winter was the most miserable one I had ever endured. I was Frozen all the time even when my husband was sweating in shorts an T shirt my GP had no clues and I also started with a fluctuating blood pressure and heart rate. Having neurological conditions as well Hashimotos it is sometimes very difficult to unpick which symptoms are coming from which condition.

This winter has started the same way and I’m miserable! I already have chilblains, frozen to the bones and sleeping for England I finally twigged that this was how I felt 12 years ago albeit it was much milder then

So having spent the last few days reading everything I could I spoke with my GP Today as I’m already booked in for a TSH and T4 test and asked him about adding a T3 test too My Gp said there was no point, as the guidelines state that only the TSH and T4 are required and even if he did do a T3 he couldn’t prescribe any T3 supplements

Has anyone got any advice?

Would an endocrinologist be an alternative?

Thank you in advance

6 Replies

I’d have the test and increase your dose immediately and see how you feel.

Good luck. I have the same problem. I am still waiting ( no longer have patience ) to see endo. Will follow you, very sound full advice given here 👌🏽

Your GP had no clues? Lordy Lordy, not having any thyroid left? No s**t Sherlock. Is your GP qualified?

SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine are you currently taking

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

Low vitamin levels are extremely common especially with Hashimoto's

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

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ask GP to test vitamins and if you are not on gluten free diet for coeliac blood test

See Box 1 page 8

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

TSH should be under 1.5 - see page 8 and page 12

Thank you ever so much for your replies. It means a lot to not be wandering around alone in the dark.

Interestingly I’ve never been told to do a fasting draw but shall do so next week, I shall also not take my Levo dose for 24hrs prior too. Thanks for the advice Slowdragon.

I shall ask for a copy of the results so I can post the results. The GP is also doing a full blood count. Not sure if this covers all the other tests listed? If it doesn’t I will request them. Or pay privately if need be.

I’m currently taking 125 mug of levothyroxine

Once again thank you all.

SlowDragon profile image
SlowDragonAdministrator in reply to Feja

It's not uncommon for conversion of FT4 to FT3 to get worse with age or menopause

Hashimoto's and low vitamins are almost inevitable

Neurological problems can be low B12

Many of us suffer peripheral neuropathy or similar due to combinations of low vitamin D/B vitamins

drgominak.com/vitamin-d/

It is essential to test FT3, your GP is incorrect about prescribing of T3. It is possible, but clinical need must be diagnosed by NHS endocrinologist. Obviously NHS is reluctant to test FT3 as they don't want to prescribe T3

However first step is full testing

2nd in to get all four vitamins optimal

Extremely common to need to be strictly gluten free. Certainly advisable to at least try it for 3-6 months

Then if FT3 remains low once vitamins are optimal and TSH around one and FT4 right at top of range......gluten free diet too, ....... then it's time to consider addition of small dose of T3

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...

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