Thyroid UK
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Newbie

Hi

The endo has said I am over replaced with thyroid hormone with

TSH 0.02 (0.2 - 4.2)

FREE T4 25.6 (12 - 22)

FREE T3 4.5 (3.1 6.8) and before that I had results of

TSH 5.30 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 4.0 (3.1 - 6.8)

So I have reduced my thyroxine to 50mcg from 150mcg so that the endo can test me again with under replaced results. Symptoms are

tiredness

constipation

joint pain

pale skin

puffy eyes

loss of energy

hair loss

feeling cold

weight gain

muscle weakness

diagnosed 2011. Thankyou

21 Replies
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Dose should only ever be increased or decreased by 25mcg. That is an enormous reduction and your likely to be very unwell

Your results showed low FT3, so you are hypo. Very likely poor conversion due to low vitamins

Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

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

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

Low vitamin levels stop Thyroid hormone working

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

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...

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

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

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Some possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

1 like
Reply

Thankyou I wasn't aware of the new results that were taken until I had them written in a letter sent to me. I figured that the endo wants to keep me unwell and I am reducing my thyroxine and he is hoping they will show undermedicated results.

THYROID PEROXIDASE ANTIBODIES 441 (<34)

THYROGLOBULIN ANTIBODIES 478.3 (<115)

Reply

Rac861,

Did your endo ask you to reduce dose?

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Thankyou yes from 150mcg to 50mcg

Reply

Rac86,

What dose were you taking when TSH was 5.30?

Endo is an idiot. Of course you will be undermedicated by a dose reduction of 100mcg. Some doctors wouldn't consider you are over replaced on 150mcg. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your endo.

As SlowDragon said, dose adjustments should be in 25mcg increments. I really would ask for a second opinion because you are going to feel awful with such a big dose reduction.

1 like
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150mcg thyroxine when TSH was 5.30. I have asked my GP if I can be referred for a second opinion but the GP cancelled my phone appointment with her because I need to be seen in clinic if I want a second opinion

Reply

Rac86,

Write to PALS at the hospital and ask for a consultant endocrinologist to review your results and the endos dose reduction. Ask your GP not to reduce your prescription until you've had a second opinion.

1 like
Reply

Thankyou I don't see the GP until the 20 December and bloods for thyroid and B12 injection were due to be done before the end of the year. I don't think the GP is going to fit me in before New Year for these. I can try calling PALS Monday morning.

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Ring receptionist and ask for blood test form for TSH, FT4 FT3, B12, folate, ferritin and vitamin D

Explain you are still waiting for urgent B12 injections from September

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Thankyou I have the forms given to me by endo in November for TSH, Free T4, Free T3, folate B12 and ferritin. GP cannot fit me in for blood draws between now and next year.

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Ridiculous

Complain to practice manager

Bloods should be done early morning

You can get them done at local hospital if surgery can’t or won’t

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Thankyou all bloods for thyroid done early morning and fasting. Because I get a bus funded by my work which picks me up at 8:30am I am only able to get bloods done by taking a day off work. I have no days off work until 22 December.

Reply

Better find out if they can do it on 22nd

Possibly not

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I plan to go to the local hospital to get bloods done on the 22 December, endo says I can come in and have them done any time

1 like
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I forgot to say that the results were taken earlier than 6 - 8 weeks after the test results before that

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Personally I'd rather get well and show them that way. Not feel even worse.

Many/most endo's have no idea of importance of gut, gluten and low vitamin levels

Strictly gluten free diet, plus vitamins at tip top levels (essential to test first)

Many endo's are Diabetes specialists and NOT thyroid experts

Keeping dose high enough so TSH low, around one (maximum) 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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Very many with Hashimoto's have significant vitamin deficiencies and highly likely essential to need to be gluten free

If after that FT3 remains low then find a T3 friendly endo

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

See this reply from SeasideSusie to someone on 50mcg and consequently very low vitamins

healthunlocked.com/thyroidu...

Also with the test result that showed high FT4 did you delay taking Levo in the 24hours prior to test? If not then no wonder you had high level

1 like
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Thankyou endo recommended I drop to 50mcg from 150mcg thyroxine and I did not take thyroxine 24 hours before blood test

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Suggest you see a different endo

This one is going to make you very ill if you reduce thatmuch

Have you had these vitamins tested? If not ask GP to do so this week.

If they refuse then you can order private testing

You need to take control. Hashimoto's is complex disease and many endo's ignore the antibodies aspect.

Read up about gluten free diet

1000's with Hashimoto's on here are strictly gluten free.

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Thankyou was due to have B12 injection in September and I am not due to see GP until December 20 for medication review. I have results from 6 months ago can post these if needed

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Yes suggest you put on new post so more will see them

Appalling that you have still not had B12 injections

1 like
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But with low B12 you can not use the thyroid hormones you are taking.

You remain hypo but bloods show high FT4

Endo is clueless if doesn’t realise this

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