Thyroid results going up and down - driving me ... - Thyroid UK

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Thyroid results going up and down - driving me nuts!

Taralynne profile image
9 Replies

Hi

I am new, was diagnosed hypothyroid in 2011. My thyroid results are driving me round the bend! My dose is currently 175mcg levo. September 2017 results were overmedicated, October 2017 undermedicated, November 2017 overmedicated, December 2017 results undermedicated. It's like my thyroid is playing games with me and it's driving me mad!

Symptoms - eyebrow loss, eyelash loss, constipation, daytime tiredness, feeling cold, pins and needles, muscle stiffness and pain, joint pain, dry skin, deafness, tinnitus, dizziness.

Feedback appreciated as to what to do. I'm close to losing my rag.

SEP 2017 - 150mcg Levo

TSH *0.03 (0.2 - 4.2)

FREE T4 21.3 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

OCT 2017 - 150mcg Levo

TSH *5.6 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

NOV 2017 -175mcg Levo

TSH *0.02 (0.2 - 4.2)

FREE T4 *25.3 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

DEC 2017 - 175mcg Levo

TSH *7.2 (0.2 - 4.2)

FREE T4 12.7 (12 - 22)

FREE T3 3.2 (3.1 - 6.8)

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Taralynne
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9 Replies
SlowDragon profile image
SlowDragonAdministrator

Presumably you have high thyroid antibodies? This is Hashimoto's also called Autoimmune Thyroid disease

Can you post you most recent Thyroid test results and also vitamin D, folate, ferritin and B12 results and ranges, if you have them

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you do your tests?

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

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop 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

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...

Taralynne profile image
Taralynne in reply toSlowDragon

I think I have high antibodies, they are both above range?

All tests done early morning, fasting, leaving off Levo for 24 hours.

TPO ANTIBODY *377.5 (<34)

TG ANTIBODY *258.3 (<115)

SlowDragon profile image
SlowDragonAdministrator in reply toTaralynne

Very definitely Hashimoto's

Strictly gluten free diet likely to help reduce TPO antibodies and improve symptoms

Highly likely to have low vitamin levels as result of Hashimoto's affecting gut function

Taralynne profile image
Taralynne in reply toSlowDragon

SEP 2017 - 150mcg Levo

TSH *0.03 (0.2 - 4.2)

FREE T4 21.3 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

OCT 2017 - 150mcg Levo

TSH *5.6 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

NOV 2017 -175mcg Levo

TSH *0.02 (0.2 - 4.2)

FREE T4 *25.3 (12 - 22)

FREE T3 4.1 (3.1 - 6.8)

DEC 2017 - 175mcg Levo

TSH *7.2 (0.2 - 4.2)

FREE T4 12.7 (12 - 22)

FREE T3 3.2 (3.1 - 6.8)

SlowDragon profile image
SlowDragonAdministrator in reply toTaralynne

Latest test shows you need 25mcg dose increase

Also your conversion is poor

FT3 should be at least above 5.5

Selenium supplements can help improve conversion

Getting vitamins optimal and strictly gluten free diet will all help

If FT3 still remains low after that then adding small dose T3 may be necessary. But other steps must be done first

So get vitamins tested, if not been done recently

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

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

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

Taralynne profile image
Taralynne in reply toSlowDragon

Thanks I have been told I have anaemia and need iron, also need an increase in vit D and folate. Can post these if needed?

SilverAvocado profile image
SilverAvocado

Although your numbers are going up and down, none of these results show over medication, which is most accurately shown by an over range freeT3. Your freeT3 result is in the lower part of the range, quite stable over all the results.

You really need a dose increase, I'd be tempted to want T3-only, to avoid piling on the T4 which is high during your flares. But when you look at the lower results where you're depending on the replacement hormone both freeT3 and freeT4 are very low. So you will probably be fine with an increase in Levo. The goal is to get the freeT3 into the top third.

Edited: typo saying the results showed over medication

Taralynne profile image
Taralynne in reply toSilverAvocado

I have never had results that show overmedication with a FT3 over range and the only time my FT3 has ever been in the top third consistently was when I was on T3. Thanks

SilverAvocado profile image
SilverAvocado in reply toTaralynne

Apologies Taralynne! This is a terrible typo! I meant to say: Although your numbers are going up and down, none of these results show over medication. I'll edit it in the post on case others get confused.

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