I think I did something wrong with my 150/175mc... - Thyroid UK

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I think I did something wrong with my 150/175mcg dose

nicola_a profile image
11 Replies

Hi, I think I did something wrong with my dose. I have high TPO and TG antibody levels and I was told by a GP I have Hashimotos because of this but my luck with GPs is not great because my previous one told me I had overmedicated on 150mcg levothyroxine (Nov 2017 results below) and my endo liked my results the time before that on the Sep 2017 ones even though I still felt bad. This was confusing me so much that the endo blamed me for the fluctuations and suggested I reduced my levothyroxine to 25mcg in November 2017 (reflected in Jan 2018 results also below) I have no idea what to do now, so confused being told one thing and something else! I think I did something wrong with my dose during the other times and that's why I reduced.

I have trouble getting up in the morning, hard stool, dry skin, tiredness, muscle pain, losing hair, anxiety, puffy eyes, weight gain, feeling cold, pins and needles, heavy periods, low libido.

When I was on 150mcg back in 2015 my results were

TSH 5.68 (0.2 - 4.2)

FT4 24.3 (12 - 22)

FT3 5.1 (3.1 - 6.8)

TPO antibody 98.5 (<34)

TG antibody 258.3 (<115)

And in September 2017 on the same dose they were

TSH 0.03 (0.2 - 4.2)

FT4 21.1 (12 - 22)

FT3 4.2 (3.1 - 6.8)

November 2017 on 175mcg they were

TSH <0.02 (0.2 - 4.2)

FT4 25.3 (12 - 22)

FT3 4.1 (3.1 - 6.8)

But back in 2015 on the same dose they were

TSH 1.20 (0.2 - 4.2)

FT4 19.5 (12 - 22)

FT3 4.0 (3.1 - 6.8)

I don't understand why they are different results on the same dose.

January 2018 on 25mcg they are currently

TSH 4.89 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.2 (3.1 - 6.8)

Any advice welcome!

Thank you!

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11 Replies
SlowDragon profile image
SlowDragonAdministrator

Levels vary with Hashimoto's, that's the effect of the disease as the thyroid is attacked

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

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

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and 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. Dairy is second most common.

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...

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

tukadmin@thyroiduk.org

You will need to increase dose back in 25mcgs steps (retesting 6-8 weeks after each dose increase) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

cjrsquared profile image
cjrsquared

In hashimoto’s disease the body produces antibodies which attack and destroy the thyroid. This is not constant, the rate increases and decreases according to the levels of antibodies produced. During an increase people talk about a hashimoto’s flare, this causes a portion of thyroid tissue to be damaged dumping a temporary excess of thyroid hormones into the circulation. Once that has passed hormone levels drop even lower than before as more of the thyroid has been destroyed. Eventually over years there is no functioning thyroid tissue left.

There is some research that suggests going gluten free reduces the antibodies and slows down the destruction of the thyroid.

From a medication point of view it is best to stick to a dose and if TSH falls hold the same dose, as it will likely be a temporary dump of hormone, get repeat bloods after 6 weeks and re assess. You may need to increase or decrease dose but much better to do in small amounts of 25 mcg.

Have you had vitamins b12, ferritin, folate and vit d tested? The body needs good levels of these in order to utilise levothyroxine properly. There is lots of info on this site. Good luck researching.

nicola_a profile image
nicola_a in reply to cjrsquared

Endo said to reduce as he didn't understand either

nicola_a profile image
nicola_a in reply to cjrsquared

Told the vitamins were fine and I supplement enough

Thanks

nicola_a profile image
nicola_a in reply to cjrsquared

The endo blamed me for the fluctuations

nicola_a profile image
nicola_a

It wasn't even my choice to reduce! The endo suggested it after blaming me for fluctuating results! I was worried he'd take me off his clinic list :(

greygoose profile image
greygoose in reply to nicola_a

Sounds to me like you'd be better off without him! He knows nothing about thyroid. I bet he's a diabetes specialist! He is making you sick with his ignorance. You did absolutely nothing wrong.

nicola_a profile image
nicola_a

Jan 2018

Ferritin 35 (30 - 400) diagnosed iron deficient

MCV 80 (83 - 98)

MCHC 359 (310 - 350)

Folate 2.1 (4.6 - 18.7)

Vitamin D 44

Vitamin B12 202 (190 - 900)

Marz profile image
Marz in reply to nicola_a

So how are these dire results being treated ? You have Iron Anaemia - Folate Deficiency - B12 Deficiency and VitD should be over 100.

nicola_a profile image
nicola_a in reply to Marz

Thanks D3 800iu tablets only, been on them since 2013.

No iron

No folate

No B12

SlowDragon profile image
SlowDragonAdministrator in reply to nicola_a

Suggest you read posts on here daily to learn how to treat correctly

Masses of posts with detailed advice on how to supplement to improve these

Get tested for coeliac, before changing to absolutely strictly gluten free diet

Ask Thyroid UK for list of recommended thyroid specialists (on email in my first reply)

Vitamin D aim for around 100nmol

B12 you need injections via GP after full testing for PA

Folate - good daily vitamin B complex with folate in

Ferrous fumerate supplements prescribed by GP

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