I’m seeking advice re interpreting my results a... - Thyroid UK

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I’m seeking advice re interpreting my results and dosing T3 medication.

PebblesPatch profile image
25 Replies

I was diagnosed with Hypothyroidism about 2 ½ years ago and I’m prescribed 75mcg of Levothyroxine. The doctors are happy because my TSH is in range, however I’m not happy. I still have hypothyroid symptoms; fatigue, aches and pains, weight gain, brain fog… I did have low levels of ferritin and Vitamin D and I was prescribed these briefly. I continue to supplement these myself after the doctors decided I had reached an acceptable level. I was referred to an endocrinologist as I wanted to make the case for being prescribed T3 medication but I got nowhere. I have no pennies for a functional doctor, so I have sourced some T3 medication from abroad and I have completed a home test for a Thyroid panel to get some baseline results to start from (28/11/20). These were:

TSH 2.58 mu/L (normal range 0.27 - 4.2 mU/L)

FT4 17.5 pmol/L (normal range 12 - 22 pmol/L)

FT3 4.3 pmol/L (normal range 3.1 - 6.8 pmol/L)

I think these indicate that I am not converting T4 to T3 adequately. I’d love some confirmation on if you agree with me. I would really appreciate some advice about dosing the T3 medication. I have T3 Liothyronine Sodium, 30 tablets 25ug Uni Pharma brand.

I would be super grateful for your help.

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PebblesPatch
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25 Replies
SeasideSusie profile image
SeasideSusieRemembering

PebblesPatch

You are currently undermedicated with Levo. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. So you need to increase your Levo to reduce your TSH, get your FT4 as high as possible then see where your FT3 lies. You also need optimal nutrient levels before considering adding T3.

So first step is increase Levo by 25mcg, retest in 6-8 weeks along with Vit D, B12, Folate and Ferritin, then post new results, with reference ranges, for further comment at that time.

PebblesPatch profile image
PebblesPatch in reply to SeasideSusie

Thanks for your response. What do you think the chances are of getting my doctor to prescribe more Levothyroxine? They have been reticent to do this in the past. I follow a protocol for Vitamin D and though I haven't been tested since the beginning of the year, I should be optimal. I supplement Ferrous Fumerate myself too but I'm not really sure where I am with those levels, I think they should be good. My B12 levels have been tested twice since I was diagnosed and they always looked good. I'm not sure about my Folate. Also do you think NHS doctors will recognise the results of my 'monitor my health' results?

SeasideSusie profile image
SeasideSusieRemembering in reply to PebblesPatch

PebbkesPatch

I can't predict what your GP will do.

MonitorMyHealth is an NHS lab so there should be no reason for your GP not to accept their results.

PebblesPatch profile image
PebblesPatch in reply to SeasideSusie

Thanks

🙏

PebblesPatch profile image
PebblesPatch in reply to SeasideSusie

Hi again. As I suspected my doctor has refused to increase my Levothyroxine as my TSH falls within normal range. I quoted you in my original mail and said, 'The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well'. Could I ask what source you have for this as I would like to refer to it in my next email with her? I also quoted the Nice article which suggests you should be dosed at 1.6 mcg of Levothyroxine per kilogram of weight. She stated that this is a starting dose which can be adjusted later and as my TSH is in 'normal' range, then there is no need to change my Levothyroxine dose. Her response has been so frustrating but I feel like I need to go back to her armed to get the best response.

SeasideSusie profile image
SeasideSusieRemembering in reply to PebblesPatch

PebblesPatch

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).*"

*He recently confirmed that this applies to Free T3 as well.

You can email Dionne at ThyroidUK for a copy of this article, but the office is now closed until 4th January:

tukadmin@thyroiduk.org

I believe SlowDragon has other information she can link to, unfortunately I don't have these saved on my computer.

PebblesPatch profile image
PebblesPatch in reply to SeasideSusie

This is great thanks. The GP has agreed to test vitamins/minerals first so I will get that done, see what that shows and take up my quest to get an increase in Levo again. I will deffo email to get a link to that article because that is very helpful. Thanks again.

🙏

SlowDragon profile image
SlowDragonAdministrator in reply to PebblesPatch

Try a different GP within the practice

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...

NHS and Privatetukadmin@thyroiduk.org

TSH should be under 2 and many people will have TSH well under one when adequately treated

gponline.com/endocrinology-...

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

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

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

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

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

PebblesPatch profile image
PebblesPatch in reply to SlowDragon

These are great articles that I can link to when emailing my GP, thanks! Unfortunately I have no pennies for an endocrinologist so I'm a bit stuck there. Out of interest how much can you expect to pay for these? The GP has agreed to test Vits/Minerals for me so I plan to see what those results show, then attempt to get a Levo increase after that. Thanks so much.

🙏

SlowDragon profile image
SlowDragonAdministrator in reply to PebblesPatch

Some endocrinologists on list are NHS but obviously may be long wait

Private endocrinologist typically costs £250 initial consultation

Cheaper as follow up

But before considering seeing any private consultant getting all four vitamins optimal

Strictly gluten free diet often helps or is completely essential

SlowDragon profile image
SlowDragonAdministrator

Unless extremely petite, guidelines on dose levothyroxine by weight can help persuade GP to increase dose levothyroxine

Even if we often 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 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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

PebblesPatch profile image
PebblesPatch in reply to SlowDragon

Oh wow this is really interesting. I've just calculated that I should be on about 130 mcg of Levo a day. I will definitely send this info to my doctor. Thanks for sharing!

SlowDragon profile image
SlowDragonAdministrator in reply to PebblesPatch

Dose has to be increased SLOWLY upwards in 25mcg steps

Bloods should be retested 6-8 weeks after each dose increase

Always get same brand of levothyroxine

All four vitamins need to be OPTIMAL

PebblesPatch profile image
PebblesPatch in reply to SlowDragon

Thanks 🙏🏻 That is all very useful.

SlowDragon profile image
SlowDragonAdministrator in reply to PebblesPatch

Ask GP to test all four vitamins now

If they are unhelpful, vitamin D test Via MMH

Look at getting B12, folate and ferritin tested alongside thyroid test in 6-8 weeks after levothyroxine dose increase via thriva, medichecks or B H

PebblesPatch profile image
PebblesPatch in reply to SlowDragon

Will do, thanks

🙏

SlowDragon profile image
SlowDragonAdministrator in reply to PebblesPatch

Print these guidelines out and give to GP

Request they follow guidelines and increase your dose to 100mcg

If they refuse then you need to insist on referral to endocrinologist

tzracer profile image
tzracer

Great advice above, T3 should be your last resort. As has been said, if you get you vitamins perfect and slowly take T4 up and don't feel well its time to try other options.It might not be easy to get the gp to comply but it is highly likely (as in my case) that the small additional of T3 will suppress your TSH and the GP may well want to reduce your levo dose if TSH is all they're looking at.

I hope you get your levo increased.

PebblesPatch profile image
PebblesPatch in reply to tzracer

Thanks! Am I right in thinking that the T3 and T4 results are the most accurate indicators and if these are optimal then the TSH result is fairly insignificant?

tzracer profile image
tzracer in reply to PebblesPatch

They are a guide, to be used in conjunction with your symptoms. We're all different, some on here have felt well with over range results. It's about finding what's right for you. TSH isn't insignificant it just shouldn't be relied on in isolation as an indicator of what is going on elsewhere.

JAmanda profile image
JAmanda

A 25mcg increase may well increase both your t4 and t3 nicely and help your symptoms a lot. Hold onto your t3 for a bit and see how you go. Plenty of evidence in the other comments to support an increase in t4. But really I’d just say to the doc, ‘look I’ve still got a lot of symptoms so I’d really like to try a 25 increase to see if that will help. If I go over range I’ll be happy to drop back down.’

PebblesPatch profile image
PebblesPatch in reply to JAmanda

Thank you. If I were to go out of range for the TSH is this a concern if I get the T3 and T4 optimal?

PebblesPatch profile image
PebblesPatch

Thank for doing that analysis, I'm really grateful. Perhaps I can improve my conversion rate by optimising my vitamin levels?

PebblesPatch profile image
PebblesPatch

I supplement Vit D3, Iron, Vit C, Selenium, Magnesium and I'm Gluten free so I'm trying :)

PebblesPatch profile image
PebblesPatch

Hiya, me again. For the benefit of those who don’t want to read through this long thread, here is a little precis of my current situation. I have Hypothyroidism and my doctor is happy because my TSH is in range, however I’m not happy. I still have hypothyroid symptoms; fatigue, aches and pains, weight gain, brain fog… My most recent thyroid test (home test end November), showed these results:

TSH 2.58 mu/L (normal range 0.27 - 4.2 mU/L)

FT4 17.5 pmol/L (normal range 12 - 22 pmol/L)

FT3 4.3 pmol/L (normal range 3.1 - 6.8 pmol/L)

Most on here argued that I am underdosed with Levothyroxine. My doc refused to increase this and instead ran a series of tests. I was happy to have these tests as others on here also suggested that it is important to get my vit/minerals optimal. I think these vit/mineral results look OK, I just want confirmation of this from you very helpful people first. I am hoping that I can say to my doctor that these results look OK, therefore my symptoms must be down to my inadequate Levothyroxine dose. I will be sharing the articles others have linked to here to support my argument. But do you think these results look OK? I supplement Vitamin D, Iron, magnesium, selenium, K2, Vit C by the way, oh and I’m gluten free.

Vitamin D 142nmol/L

Serum ferritin 88ug/L (30-470)

Serum folate 9.8 ug/L (2.5-19.5)

Serum Potassium 3.8 mmol/L (3.5-5.3)

Oh yes and there were these results, I guess these are not so good;

HbA1c 39 mmol/mol Next to this one it states ‘high risk of diabetes mellitus’ (I was diagnosed as prediabetic at the same time as being diagnosed as Hypothyroid 2 years ago and I later came out of this zone). I think this result is linked to my increased weight resulting from my poorly managed Hypothyroidism.

Serum Vitamin B12 1299 ng/L (180- 900) This is the second time I have returned an elevated B12 result. I’m not sure what this means?!

I would be grateful for your input on these vit/mineral results.

Thank you

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