Thyroid UK
85,933 members100,828 posts

Here on behalf of my sister

Hello, I am here on behalf of my sister. She reduced her thyroid hormone replacement (Levothyroxine) on advice of her endo from 175mcg to 50mcg due to symptoms of sweats although she only really gets this when she exerts herself. She thinks it is a hyperthyroid symptom. She is also really tired, can't concentrate, coming down with viruses and colds, joints are aching, flaky skin all over her face. FT3 repeatedly low or below range. Advice welcome.

(DEC 2017 - 50mcg Levothyroxine)

TSH 6.5 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.1 (3.1 - 6.8)

13 Replies
oldestnewest

another useless medic. we are seeing too many of these problems on here. Sparklee your sister's T3 is way too low and she needs an increase in meds and a retest after 6 weeks. Has your sister had any blood tests for antibodies, Vitamins B12, D, iron, ferritin and folate. What does her GP think, is he quite happy to let the endo play about with your sister's health. Sack the endo and once your sister has some bloods results post them on here for advice on supplements etc. Meantime check out Seaside Susie, a mine of info about vitamins and supplementation. If your sister has antibodies I would recommend she goes gluten free.

Reply

TPO antibodies 577.3 (<34)

TG antibodies 1200 (<115)

Reply

Well no doubt your sis has Hashimoto's and most docs and endos think it isn't a problem. Well it most certainly is and probably explains the sweats! Her TSH needs to be below one to help stop the antibodies and also she deffo needs to go gluten free and possibly even lactofree. Her guts are likely "leaky" due to antibodies and her vitamin levels will be trashed. I will be very surprised if her Vit B12 and Vit D levels aren't way too low.

If she can afford to pay for private finger prick blood tests she should try Blue Horizon or Medichecks (they have offers on a Thursday) they will do all thyroid levels, and B12, Vit D iron, ferritin and folate. The results are back by email within the week. I have been doing my own tests twice per year for the last 4 years. I like to be in control of my own health!! plenty of people on here will interpret the results for you.

Reply

Thanks she had vitamins and minerals tested mid December. Will post these now. She supplemented iron form 2013 - 2016, folic acid November 2016 - January 2017, Vitamin D 2013 - 2018, vitamin B12 injections 2017 - 2018.

Reply

Sweats are often due to low vitamins which are extremely common with Hashimoto's

These results show she is extremely under medicated

Are these from when taking 175mcg?

She will become increasingly unwell on just 50mcgs

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

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

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

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...

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

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

Essential with Hashimoto's to improve vitamins first. Increase Levo so that TSH is around one and FT4 towards top of

Very likely gluten free diet is essential

If after all these FT3 remains low then, like many of us with Hashimoto's she may need the addition of small dose of T3

Also consider DIO2 gene test. It's common variation and if test is positive may help getting T3 prescribed

thyroiduk.org.uk/tuk/testin...

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Reply

Results from when she was on 50mcg. Endo reduced her dose from 175mcg to 50mcg. Thanks

Reply

Endo is probably only a Diabetes specialist

Why on earth would he reduce dose

She was clearly under medicated

She will be far far worse now

Insist on vitamin testing urgently and 25mcg dose increase in Levo. Retesting in 6 weeks. Repeated until TSH is around one and FT4 towards top of range

Low vitamins due to under medication

healthunlocked.com/thyroidu...

Reply

She went to endo appointment where she told him her digestive symptoms were worse on more levothyroxine. He told her on that basis to reduce

Reply

Digestive problems are common when hypo especially with Hashimoto's

Low stomach acid is very common, causing acid reflux

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

Dairy or lactose intolerance too

Reply

What were her results on 175mcg ?

Reply

TSH 0.02 (0.2 - 4.2)

Free T4 20.9 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

Previous endo told her that her conversion of T4 to T3 is poor

Reply

Correct

Previous endo had some idea

They are being pressured in to NOT prescribing T3 due to recent extortionate cost increase

She definitely needed addition of small dose of T3

Like very many with Hashimoto's

But also essential to get vitamins optimal and deal with food intolerances first.

Endo's often have no idea about that

Low TSH and high FT4 with low FT3 confirms poor conversion

We see lots of posts like this

Low vitamins causing low TSH high FT4 - endo insists on dose reduced

healthunlocked.com/thyroidu...

Here's why

healthunlocked.com/thyroidu...

Selenium supplements can help

Reply

Her endo should be shot ....she needs more thyroid meds not less and chances are she needs NDT

3 likes
Reply

You may also like...