Why are my levels so bad?: TSH 5.6 (0.2 - 4.2) FT... - Thyroid UK

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Why are my levels so bad?

Kitty90 profile image
18 Replies

TSH 5.6 (0.2 - 4.2)

FT4 14.4 (12 - 22)

FT3 3.2 (3.1 - 6.8)

On 150mcg thyroxine diagnosed 2012 thanks

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Kitty90 profile image
Kitty90
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18 Replies
Jazzw profile image
Jazzw

Because you need more than 150mcg of levothyroxine, most likely!

Kitty90 profile image
Kitty90 in reply toJazzw

GP says I take enough thanks

bantam12 profile image
bantam12 in reply toKitty90

He or she clearly has no idea how to treat properly, time to change GP.

Jazzw profile image
Jazzw in reply toKitty90

GP is very very wrong. Not unusual, but very frustrating....

You need a raise in dose. Most people treated with levothyroxine only begin to feel better once their TSH is below 1.0 and their FT3 and FT4 much higher in their respective ranges.

Can you see another GP?

Kitty90 profile image
Kitty90 in reply toJazzw

Yes

Angel_of_the_North profile image
Angel_of_the_North in reply toKitty90

Well, if you were taking enough , you would feel well and your free T4 and free T3 would be in the top quarters of their ranges and TSH would be under 1. QED

gabkad profile image
gabkad

Possibly you are not absorbing the entire dose.

Thyroxine needs to be taken on an empty stomach with water. Then nothing to eat for about an hour. Coffee is the worst. It will inhibit absorption of 1/3 of the dose.

If it's not that, then you have some other reason for why you are not absorbing the medication. Could be many things including gastric mucosal atrophy or coeliac disease.

Cut and paste from Pubmed:

Conditions and drugs interfering with thyroxine absorption.

Liwanpo L1, Hershman JM.

Author information

Abstract

Food, dietary fibre and espresso coffee interfere with the absorption of levothyroxine. Malabsorptive disorders reported to affect the absorption of levothyroxine include coeliac disease, inflammatory bowel disease, lactose intolerance as well as Helicobacter pylori (H. pylori) infection and atrophic gastritis. Many commonly used drugs, such as bile acid sequestrants, ferrous sulphate, sucralfate, calcium carbonate, aluminium-containing antacids, phosphate binders, raloxifene and proton-pump inhibitors, have also been shown to interfere with the absorption of levothyroxine.

Kitty90 profile image
Kitty90 in reply togabkad

I take levo properly

gabkad profile image
gabkad in reply toKitty90

As per the cut and paste I included, there may be other reasons.

Kitty90 profile image
Kitty90 in reply togabkad

I have anti tissue transglutaminase antibody at 4 (<1)

gabkad profile image
gabkad in reply toKitty90

Didn't anyone tell you what this means?

Kitty90 profile image
Kitty90 in reply togabkad

Was told negative for coeliac

gabkad profile image
gabkad in reply toKitty90

You are not negative for coeliac.

The blood test indicates that you need to have a biopsy done to check which is the definitive way to determine diagnosis.

Ask your GP to refer you to a Gastroenterologist.

Kitty90 profile image
Kitty90 in reply togabkad

Anti tissue transglutaminase antibody 4 (<1)

gabkad profile image
gabkad in reply toKitty90

Antibodies to tissue transglutaminase (abbreviated as anti-tTG or anti-TG2) are found in patients with several conditions, including celiac disease, juvenile diabetes,[1] inflammatory bowel disease,[2] and various forms of arthritis.[3][4]

In celiac disease, ATA are involved in the destruction of the villous extracellular matrix and target the destruction of intestinal villous epithelial cells by killer cells. Deposits of anti-tTG in the intestinal epithelium predict celiac disease.[5]

Jazzw profile image
Jazzw in reply togabkad

:) So in other words, Kitty90 , you might well benefit from going completely gluten free.

It’s likely you’re sensitive to gluten and that’s making it difficult for your gut to absorb your levo (and other vits and minerals). Talk it over with your doctor before cutting out gluten though - he/she may want to do further tests first.

SlowDragon profile image
SlowDragonAdministrator

Ask you GP for referral for endoscopy ASAP

Your result is above one - i.e. Positive

celiac.org/celiac-disease/u...

So you need testing urgently

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

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

Ask GP for coeliac blood test first

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...

You may be struggling to absorb Levo. But you certainly need a dose increase

Taking vitamin C at same time helps some patients

academic.oup.com/jcem/artic...

Your other post shows vitamin levels are too low.

Strictly gluten free diet likely to help heal gut

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:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

We must correct low vitamin levels, get Levothyroxine dose up, so that TSH under one, very often need to gluten free. Then if FT3 still remains low as small dose of T3 may be needed

Sv_cy profile image
Sv_cy

You take 150mcg thyroxine and FT3 still VERY low. It means your body does not transfer T4 in T3 by different reasons. This was my case...my doctor was telling me that everything is fine. But I was ready to die... Thanks to internet and the people who have the same problems!!!! There are two ways:

- take thyroxine+T3 or

- take Natural Desiccated Thyroid which has T4,T3,T2,T1

Just some days ago I start to take T3 (as I can buy it in my country). And there is big difference.

My friend has the same situation and she decided to take Natural Desiccated Thyroid.

After some time we will see what is better solution from these two options :-) But for sure you have to take T3 extra!!! Otherwise you will not feel better...

Also you have to check your antibodies. If it is high you must find the ways to put them down.

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