Please can you look at my results and advise? - Thyroid UK

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Please can you look at my results and advise?

Juliana88 profile image
19 Replies

I recently asked my GP for a full Thyroid test, as I am so tired all of the time. I booked a test for 7.30am, and missed my dose of Thyroxine the night before.

TSH 2.6 (0.27-4.20)

FT4 16.3 (12.0-22.0)

FT3 4.2 (3.1-6.8)

Peroxidase Antibodies 5kIU/L (<34)

B12 414ng/L (197-771)

Folate 20.0ug/L (3.9-26.8)

Ferritin 64ug/L (13-150)

Nurse advised NHS no longer test Vitamin D.

Currently medication is:

Thyroxine 50mcg

Metoject Pen 20mg

Folic Acid 5mg

Evacal D3 1500mg

Ramipril 5mg

Alendronic Acid 70mg

Thyroxine reduced from 100mcg to 75mcg in 2013. GP said I was over medicated in June 2019 so reduced dose to 50mcg. I'm so fed up of feeling like this, and any advice would be very much appreciated. Thank you.

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19 Replies
Buddy195 profile image
Buddy195Administrator

I’m not surprised you feel unwell as 50mcg Levo is what most people start on. I didn’t feel well until my TSH was ‘under 1’. A Levo increase would hopefully get your T3 and T4 higher in the range. 🤞you can manage to get an increase from your current GP. If not, I’d consider moving to another GP or practice.

Very best wishes to you Juliana88.

Juliana88 profile image
Juliana88 in reply to Buddy195

Thank you for your advice and good wishes Buddy195 👍

SlowDragon profile image
SlowDragonAdministrator

Ft4 is 43% through range

Ft3 is 29% through range

Request/insist on 25mcg dose increase in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

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)."

(That’s Ft3 at 58% minimum through range)

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 at

tukadmin@thyroiduk.org

Juliana88 profile image
Juliana88 in reply to SlowDragon

Thank you so much SlowDragon. The brand is Teva. I will do this as soon as possible. The nurse I saw last week, before full results were back - advised me to buy a supermarket multivitamin for post menopausal women for the fatigue. I will update on here after my next quest. Much appreciated.

SlowDragon profile image
SlowDragonAdministrator in reply to Juliana88

Multivitamins are at best waste of time, but can actually cause harm for thyroid patients

Your results show you are under medicated and still hypothyroid

Get vitamin D tested now

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Juliana88 profile image
Juliana88 in reply to SlowDragon

Thank you so much SlowDragon. I realise I was lucky to have T3 test done as they refused some years ago. I will get the Vit D tested, continue with GP and post on here with the outcome. I have had Northstar in the brown/white packet prior to Teva. Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to Juliana88

Northstar 25mcg is Teva

Northstar 50mcg and 100mcg are Accord

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more some less

healthunlocked.com/thyroidu...

Juliana88 profile image
Juliana88 in reply to SlowDragon

Thanks so much, I will be well prepared to insist on an increase in dose and I will specify Accord and change pharmacy if necessary. My starting dose over 20 years ago was 100mcg which they have reduced twice over the years. I’m grateful for your knowledgeable advice and will be more confident stating my case.

SlowDragon profile image
SlowDragonAdministrator in reply to Juliana88

Accord or Mercury Pharma are the most available and often best tolerated

Accord don’t make 25mcg tablets. So for 75mcg you will need prescription for 50mcg tablets and cut one in half for 25mcg

Retest 6-8 weeks after any dose change or brand change in levothyroxine

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. This gives 24 hours gap between last dose and test

Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Partner20 profile image
Partner20 in reply to Juliana88

If you have no issues with Teva, (usually sensitivity to the mannitol and/or acacia fillers used, there is no need to change away from this brand.

Juliana88 profile image
Juliana88 in reply to Partner20

Thank you Partner20 for your reply. As I’ve been feeling so bad for so long, I haven’t kept on top of the brand, apart from it feeling as if it’s making no difference 😕 and of course each condition I have is managed by different hospitals, with no real interest in the hypothyroidism.

Juliana88 profile image
Juliana88 in reply to SlowDragon

Hello all @SlowDragon, not sure if I should have started a new post but I’m back with an update.

I spoke to a GP on Monday to ask for an increase of 25mcg Levothyroxine. I stated my case, quoting Dr Toft article about optimal TSH so she agreed. Issued 14 tablets to be taken every other day, then repeat bloods. I hope to have another repeat prescription without any fuss, so the blood test will be in 6-8 weeks, as advised.

I instantly recognised the pink foil on the 25mcg, as opposed to the green foil on the 50mcg which reassured me that I must have had no issues with Teva brand in the past.

My Vitamin D result arrived today, 74.9 stating Adequate. After reading so much over the last few weeks, I’m not sure if I should ask about pernicious anaemia, as suggested by shaws, because it seems it is yet another test that is not routinely offered. And quite expensive on private tests.

Thanks to a very wise relative who recommended sharing my results on here, and thanks to your advice too, I am finally trying to take control of my own health and multiple conditions. I now realise I should have researched more in 2019 when they told me I was over medicated. I am truly grateful for all your help and advice.

SlowDragon profile image
SlowDragonAdministrator in reply to Juliana88

Issued 14 tablets to be taken every other day, then repeat bloods. I hope to have another repeat prescription without any fuss, so the blood test will be in 6-8 weeks, as advised.

Presumably you mean 14 x 50mcg tablets (25mcg dose increase )

Or do you mean 25mcg tablets every other day- only 12.5mcg dose increase?

Juliana88 profile image
Juliana88 in reply to SlowDragon

Thank you for your reply. She said she could only increase it slightly in case I get palpitations, hence the gradual increase. So when I got the prescription it was 14 x 25mcg. I was expecting a flat refusal so thought that was a good result?

SlowDragon profile image
SlowDragonAdministrator in reply to Juliana88

Well it’s a start …..retest in 6-8 weeks

Make sure you test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Juliana88 profile image
Juliana88 in reply to SlowDragon

Thank you SlowDragon. I will do. Thanks for your support.

Juliana88 profile image
Juliana88

Thank you. I will do thorough research from today, and keep you posted.

shaws profile image
shawsAdministrator

It's about time doctors stopped messing about by reducing thyroid hormones but to keep reducing your dose to try to 'keep it' somewhere in the range is awful.

It is as if the GP is playing with some cards i.e. solitaire and plucks from somewhere the dose he's going to give to the patient who is complaining and in discomfort!

Change your doctor and hopefully you will get one who knows a 'little' bit more than your present one.

50mcg is a starting dose and, unless you are very, very frail with a heart disease small increases in levo dose should be undertaken in order to resolve clinical symptoms.

Ask GP to test for pernicious anaemia as once we have one autoimmune condition we are apt to develop more. I have several myself.

You need B12, Vit D, iron, ferritin and folate checked.

The aim for hypo is a TSH of 1 or lower, with a Free T4 and Free T3 in the upper part of the ranges.

Juliana88 profile image
Juliana88 in reply to shaws

Thank you Shaws. I have ordered the Vit D test, as advised by SlowDragon and yes I am currently looking at changing my Doctors. Thanks for your reply 👍

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