Thyroid UK

Newbie

Hi I am new and I was diagnosed hypothyroid in 2011. I take 100mcg levothyroxine and I have had some problems which I can't put down to just my low thyroid. I am 30 years old, female. Here is a list of my symptoms -

Bone tenderness and pain in shin bone - I cracked my tibia bone in a fall 12 years ago. The bone has hardly improved, it still feels ridged, it is tender and I get pains in it.

Eyelashes falling out - I had 4 eyelashes fall out this morning.

Tiredness

Pins and needles in arms and toes

Immediately feeling cold when going outside

Gaining weight around my middle and hips very easily.

Loss of appetite

Blood sugar crashes, going to sleep after eating and waking up shaky.

Rib pain

Wrist and hip pain

Heavy periods

Not opening my bowels every day.

Feeling sick to my stomach.

Gritty eyes

Flaky and splitting nails

Muscle spasms, muscles feeling paralysed

Lack of concentration/memory

Advice would be appreciated for my upcoming appointment on Tuesday as to the cause of my symptoms, thank you.

December 2017 (100mcg)

TSH 4.89 (0.2 - 4.2)

FREE T4 14.8 (12 - 22)

FREE T3 3.4 (3.1 - 6.8)

October 2017 (175mcg)

TSH 0.03 (0.2 - 4.2)

FREE T4 21.3 (12 - 22)

FREE T3 4.6 (3.1 - 6.8)

18 Replies
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Do you know if you have high thyroid antibodies? If high this is autoimmune thyroid disease also called Hashimoto's

About 90% of all hypothyroidism in Uk is due to Hashimoto's so it's pretty likely. Particularly as your results are hopping up and down

If not ever had thyroid antibodies tested, ask GP to do so

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

Extremely common to be far too low

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

Your December results show you need 25mcg dose increase

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...

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

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

Typical post with Low vitamins due to under medication

healthunlocked.com/thyroidu...

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TPO ANTIBODY 505.3 (<34)

TG ANTIBODY 286.3 (<115)

I am guessing Hashimotos

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FERRITIN 23 (15 - 150)

FOLATE 2.0 (2.5 - 19.5)

VITAMIN B12 217 (190 - 900)

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Yes Hashimoto's and vitamin levels are dire

Has GP seen these and what supplements are prescribed?

B12 you need testing for Pernicious Anaemia before starting B12 injections

Folic acid supplements should not be started until after first B12 injection

Ferritin. You need full iron panel. Ferrous fumerate supplements 2 or 3 x daily

Ask GP to test Vitamin D

Or get private test

Vitamindtest.org.uk £28 finger prick

Low vitamins causing low TSH high FT4 - eg like your October results

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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Meant to be on 210mg iron once a day but GP reviewing this because she doesn't know how much I need. Diagnosed iron anaemia 2013

Nothing for folate or B12

Taking 8000iu D3 since March 2017

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Ask her to test for coeliac as possible cause of poor absorption, though only 5% with Hashimoto's are coeliac. Majority of us are gluten intolerant.

Most medics have no idea about this.

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I plan to go to GP appointment next week asking for coeliac blood test.

1 like
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I had absolutely no gut symptoms. Tested negative for coeliac 20 years ago

Found to be severely gluten intolerant (no symptoms at all other than low vitamins)

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Vit D 62.1 (suboptimal) in Dec 2017 from 70.2 (suboptimal) in Jan 2017

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Your symptoms sound rather familiar. My Endo doctor checked my vitamin D level as well, it was ok.

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Tiredness & cold are thyroid symptoms. Here's a list of thyroid symptoms:-

thyroiduk.org.uk/tuk/about_...

Have you had your vital minerals tested? B12/folate iron/ferritin & Vitamin D for starters.

I had bone pain when low vitamin D, esp shin & ribs. Pins n needles/shakiness/spasms can be low B12, heavy periods low iron etc. they all need to be optimal for Levo to work correctly.

[Edit - I see your results are low & hope your GP has prescribed adequate supplements]

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FERRITIN 23 (15 - 150)

FOLATE 2.0 (2.5 - 19.5)

VITAMIN B12 217 (190 - 900)

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VITAMIN D 62.1 (50 - 75 suboptimal) dropped from 70.2 in Jan 2017, taking 8000iu oral spray

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8000iu is a good amount, your Vit D levels aren't that low, my bone pain worsened to start with & I felt better when levels reached around 100.

(It is recommended to supplement K2 & magnesium with Vit D)

Higher levels of B12 will help ease pain too, although you should rule out pernicious anaemia before supplementing really (see information from the PAS site here on HU healthunlocked.com/pasoc)

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Do you mean 800iu or 8000iu ?

You need to add magnesium and vitamin K2 (Mk7)

Going strictly gluten free will help gut heal

Once vitamin levels are optimal, several months strictly gluten free and Levo dose high enough to bring TSH down to around one and FT4 towards top of range, if FT3 still remains low, then you may need, like many of us with Hashimoto's, the addition of small dose of T3.

But essential to do other steps first

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

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

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

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8000iu

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How long have you been taking this much? Only since recent test?

You can retest in 2-3 months via vitamindtest.org.uk - £28 postal kit

Definitely add some magnesium and vitamin K2

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All vitamin and minerals taken Dec 2017

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