Overmedicated results? Advice please: Hi I am new... - Thyroid UK

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Overmedicated results? Advice please

flower89 profile image
9 Replies

Hi I am new, endo wants me to reduce my medication from 175mcg. Diagnosed 2010 thanks for reading.

TSH 0.02 (0.27 - 4.20)

FREE T4 20.9 (12 - 22)

FREE T3 3.8 (3.1 - 6.8)

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flower89
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SlowDragon profile image
SlowDragonAdministrator

Your FT3 is too LOW indicating you have poor conversion. Lowering dose of Levo will make this worse, not better

Do you have Hashimoto's also called autoimmune thyroid disease? Diagnosed by high thyroid antibodies.

Have you had recent vitamin blood tests. Vitamin D, folate, ferritin and B12.? Post results and ranges if you have them

Low vitamins stop thyroid hormones working. Often the cause of low TSH, but also low FT3

Have you been on different dose or been on T3 and then had it stopped?

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.

flower89 profile image
flower89 in reply to SlowDragon

TPO antibodies 478 (<34)

TG antibodies 255.3 (<115)

Ferritin 11 (15 - 150)

Folate 2.3 (2.5 - 19.5)

Vitamin B12 136 (190 - 900)

Vitamin D 17.2 (<25 severe)

Thanks

Treepie1 profile image
Treepie1 in reply to flower89

You have Hashimotos and your Vit results are dire.See Seaside Susies replies to folk with similar results.

SlowDragon profile image
SlowDragonAdministrator in reply to flower89

How long have you had these vitamin results and why has GP not called you in urgently.

These are all dangerously low

Did your endo see these?

Can you make an urgent appointment for tonight or tomorrow with any GP at the surgery

The ferritin is absolutely dire. You will need full iron panel and iron infusion

Full testing for Pernicious Anaemia before starting B12 injections

Folate needs improving with folic acid supplements but should NOT Be started until after first B12 injection

Vitamin D you need LOADING dose

You probably also need testing for coeliac disease

See SeasideSusie replies to similar

Your GP has been extremely negligent not to treat these

Your high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease

Hashimoto's affects the gut and leads to 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...

flower89 profile image
flower89 in reply to SlowDragon

Endo and GP have seen them. I looked up complete blood count levels on internet which point to anaemia but no treatment given

SlowDragon profile image
SlowDragonAdministrator

Here is a reply from SeasideSusie to similar dire levels

healthunlocked.com/thyroidu...

Would suspect your endo was a Diabetes specialist, not a thyroid one

They should have been well aware that low vitamin levels stop Thyroid hormones working

See Box 1.

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

onlinelibrary.wiley.com/doi...

You need a new endo.

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

Clutter profile image
Clutter

Welcome to the forum, Flower89.

Did your endo say why s/he wants dose reduced and by how much? Is endo a trainee or consultant?

Who ordered the ferritin, folate, B12 and vitD results and what treatment have you been given?

flower89 profile image
flower89 in reply to Clutter

Endo wants dose reduced to 50mcg and was a consultant. GP ordered vitamin and mineral tests and no treatment given

Clutter profile image
Clutter in reply to flower89

Flower89,

Dose adjustments are supposed to be in 25mcg increments at six week intervals with thyroid levels checked after 6-8 weeks in case further adjustment is required. Reducing dose 125mcg is going to make you very unwell. I would refuse to reduce dose more than 25mcg without a second opinion from another consultant and would not agree to see that endo again.

I would write a complaint to your practice manager and say that no-one from the practice has contacted you to ask you to make an appointment to see a GP or collect a prescription re severerely deficient vitamin and mineral blood test results.

Vitamin D is severely deficient. Your GP should refer to local guidelines or the NICE CKS recommendations for treating vitamin D deficient adults cks.nice.org.uk/vitamin-d-d... Do not accept a prescription for 800iu which is a maintenance dose to be prescribed when vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

Ferritin is deficient and this may indicate iron deficiency anaemia. Your GP should do an iron panel and full blood count to check. If you are prescribed iron it should be taken 4 hours away from Levothyroxine.

B12 and folate are deficient. Your GP should initiate B12 injections 48 hours before you are prescribed 5mg folic acid daily. GP should also investigate whether pernicious anaemia is causing B12 and folate deficiencies. Symptoms are listed in b12deficiency.info/signs-an... healthunlocked.com/pasoc are the experts on PA, B12 and folate deficiency if you want more advice.

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