Hi: Hi everyone, I️ was diagnosed with... - Thyroid UK

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KrystalB profile image
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Hi everyone,

I️ was diagnosed with Hashimotos in January 2014. I have been taking Teva but have been on different brands and doses of Levo, and my current dose is 100mcg. I don't really know when best to take my Levo, I usually take it in the morning but I realise I need to leave at least an hour or so before/after breakfast so for that reason I don't eat breakfast. I can't really take it at night because I have trouble staying asleep and I wake up most days unrefreshed and with headaches. I am on a period right now and it has been even more painful than usual. I am 33 and have always had painful periods. A nurse practitioner believes me to have endometriosis and ultrasound scans done on my pelvis have shown ovarian cysts. Toes constantly numb and white. Waking up to find eyelashes falling out and around my eyes. Bloating. Weight gain which I don't need right now since I am trying to fit into a wedding dress for March. Was 23 inches around my waist now 30 inches wide. Advice appreciated.

TSH 5.7 (0.2 - 4.2)

FT4 14.5 (12 - 22)

FT3 2.2 (3.1 - 6.8)

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KrystalB
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SeasideSusie profile image
SeasideSusieRemembering

If you post your latest test results, with reference ranges, members can comment. If you don't have them and you are in the UK, ask your surgery for a print out, we are legally entitled to our results under the Data Protection Act.

KrystalB profile image
KrystalB in reply to SeasideSusie

I have December 2017 results only, not sure if recent enough. Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to KrystalB

They will be fine.

KrystalB profile image
KrystalB in reply to SeasideSusie

TSH 5.7 (0.2 - 4.2)

FT4 14.5 (12 - 22)

FT3 2.2 (3.1 - 6.8)

SlowDragon profile image
SlowDragonAdministrator

Lots of posts on here with people saying they don't get on with Teva

Did you feel better on previous brand?

Post your most recent results and ranges for TSH, FT4 and FT3 plus thyroid antibodies

Also vitamin D, folate, ferritin, B12 as well

You sound under medicated

If you have Hashimoto's (high thyroid antibodies) low vitamin levels are extremely common as is gluten intolerance

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...

thyroidpharmacist.com/artic...

KrystalB profile image
KrystalB in reply to SlowDragon

I have December 2017 results only, not sure if recent enough. I didn't feel well on any brand of Levo. Have tried Actavis, Mercury Pharma, Wockhardt and Thybonn Henning (German brand I think). Thanks

KrystalB profile image
KrystalB in reply to SlowDragon

TSH 5.7 (0.2 - 4.2)

FT4 14.5 (12 - 22)

FT3 2.2 (3.1 - 6.8)

TPO ANTIBODY 970 (<34)

TG ANTIBODY 277.5 (<115)

SlowDragon profile image
SlowDragonAdministrator in reply to KrystalB

How much Levothyroxine are you taking

You are extremely under medicated

Dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Retesting 6-8 weeks after each dose increase

You have extremely high antibodies in part because you are so under medicated but also extremely likely to need to be strictly gluten free

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...

thyroidpharmacist.com/artic...

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

KrystalB profile image
KrystalB in reply to SlowDragon

100mcg levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply to KrystalB

Make urgent appointment with GP and ask for 25mcg dose increase

Retesting 6-8 weeks after

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

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.

You might want to change back from Teva. Especially if results are a lot worse since being on it

KrystalB profile image
KrystalB in reply to SlowDragon

Also vit D deficient and folate anaemia and iron anaemia too. I supplement all of these. No improvement yet. Thanks!

SlowDragon profile image
SlowDragonAdministrator in reply to KrystalB

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

What supplements are you taking

They are low BECAUSE you are so under medicated for your Hashimoto's

But in order to get better you must improve these vitamins and get dose of Levothyroxine increased in slow steps

Post the actual recent vitamin results and ranges

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...

But, especially with Hashimoto's we must get vitamins optimal first. Levo dose increased as outlined until TSH is around one and FT4 towards top of range .

Majority of us find gluten free diet helps or is essential

If after this FT3 remains low then, like many with Hashimoto's you may need the addition of small dose of T3

Ask Dionne at Thyroid Uk for list of recommended thyroid specialists

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