Hello !

[Flamingo60]

Hi everyone, I’ve just joined the community and look forward to chatting with you. Hoping to learn more about my condition and have a better understanding of what I need to do to get the meds right 🙂

[PurpleNails Administrator]

welcome to forum

Your profile says you’re currently on 25mcg levo for 6months & on lower dose before.

Most start on 50mcg & need to increase by 25mcg every 6-8 weeks to full dose. This is because initially the replacement hormone tops up levels but a few weeks on it replaces what failing thyroid cant produce. ie your likely very overdue an increase & you may be at a hypothyroid levels & can be cause of symptoms you mention.

Do you have access to any blood test results. Printed copies or online record. Post you results with lab range. Ranges vary so always needed.

For full test you need TSH, FT4, FT3, TPO & TG antibodies.

Most feel well with TSH around 1 FT4 top 3rd or range & FT3 at least half way.

Levo works well if Folate, ferritin, B12 & vitamin D are optimal. As doctors don’t test everything many use private options.

[Flamingo60 in reply to PurpleNails]

Thanks for replying PurpleNails my latest results were TSH 4.71 T3 4.5 T4 15.8 through medichecks in March. I’m due to take another test this week with the antibody test. Just did some digging and it seems I’ve been on 25mg daily for since March 22 (bit more than 6 months!) I must be honest I do find it all a bit confusing at the moment in terms of what a good result should look like.

[PurpleNails Administrator in reply to Flamingo60]

Your TSH should be lower and “Frees” FT4 & FT3 should be higher….

Most are well when TSH around 1 and FT4 in top third of range. FT3 over 50%. We are all individual so some feel well at a different level to others.

This is one of the reasons a lower starting dose is given & increase introduced gradually. It allows for levels to be adjusted slowly which can be easier to tolerate & it allows you to monitor for improvements in symptoms & recognise when they ease.

This is usually every 6-8 weeks. Then once stable you are tested annually.

Practices need prompting. - I always have to contact mine & say I’m due a blood test & I also have to specify what’s due as I have other issues which should be monitored.

[Flamingo60 in reply to PurpleNails]

Thank you that’s really helpful

[SlowDragon Administrator]

Welcome to the forum

What were results BEFORE starting thyroid hormone

What are your most recent results

ALWAYS test TSH, Ft4 and Ft3

Test early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

Always get same brand levothyroxine at each prescription

Levothyroxine doesn’t “top up” thyroid levels, (because of the feedback mechanism), Levothyroxine replaces your own thyroid …..because as TSH reduces your own thyroid stops working so hard, and your own thyroid output diminishes. So it’s important to be on high enough dose

Standard starter dose is 50mcg unless over 65 years old

Dose is increased up over 6-12 months until on or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

if been under medicated since starting on levothyroxine, likely to have very low vitamin levels

Important to test vitamin D, folate, ferritin and B12 at least annually

Being hypothyroid/under medicated this leads to low stomach acid and low nutrient absorption and low vitamin levels as direct result

[Flamingo60 in reply to SlowDragon]

Hi SlowDragon thanks for responding to my first message. I’ve just managed to dig out my pre-Levothyroxine results which were - TSH 9.91 T4 15.3 and T3 1.6 in Sept 21. I was put on 25mg every other day to start with, stopped after a few weeks due to believed adverse side effect. Started again at that same dose which was upped after a few months to 25mg daily from Mar 22. My latest results from bloods taken in Mar this year were TSH 4.71 T3 4.5 T4 15.8. I had my thyroid checked as part of a wider test, my vitamin levels are ok (I supplement with Vit D) but my cholesterol was slightly elevated and my Transferrin Saturation was low - I understand both could be linked to an under active thyroid? I am due to do another thyroid blood test this week to check again. From what you’re saying I should have started at 50mg!

[SlowDragon Administrator in reply to Flamingo60]

unless you are aged over 65 years old, very frail or have heart condition standard STARTER dose levothyroxine is 50mcg

Dose is increased slowly upwards in 25mcg steps over 12-18months until on (or near) full replacement dose

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

ALWAYS test early morning and last dose levothyroxine 24 hours before test

Levothyroxine doesn’t “top up” failing thyroid, it replaces it, therefore it’s ESSENTIAL to be on high enough dose

It’s a balancing act …..modern guidelines frequently suggest starting at full replacement dose, (typically 1.6mcg per kilo of your weight per day) but many people can’t tolerate starting on dose higher than 50mcg

It takes 6-8 weeks for increase in levothyroxine to improve metabolism, then likely ready for next increase

after a few months to 25mg daily from Mar 22. My latest results from bloods taken in Mar this year were TSH 4.71 T3 4.5 T4 15.8.

Having been left ludicrously under medicated for at least 18 months you may need to initially increase to 50mcg and 25mcg alternate days ……wait 6-8 weeks before increasing to 50mcg daily

Retest bloods 6-8 weeks later

Unless extremely petite likely to eventually be on at least 100mcg levothyroxine per day

The aim of levothyroxine is to increase the dose until TSH is around 1, (always below 2 max)

Low vitamin levels directly linked to being hypothyroid/under medicated due to low stomach acid levels resulting in poor nutrient absorption

Insist GP test full iron panel including ferritin

Vitamin D, folate and B12

How much vitamin D are you currently taking

[Flamingo60 in reply to SlowDragon]

I’m 63 (as of yesterday!), very fit, 160cm tall and 52kg. I don’t feel very healthy at the moment however.

My vit D, B12 and Folate were all well within the normal range. I take vit D (3000 IU) with K2.

[SlowDragon Administrator in reply to Flamingo60]

My vit D, B12 and Folate were all well within the normal range. I take vit D (3000 IU) with K2.

Please add actual results and ranges

NHS only tests and treats vitamin deficiencies

Optimal vitamin levels are

Vitamin D at least over 80nmol and between 100-125nmol may be better

Serum B12 at least over 500

Active B12 at least over 70

Folate near top of range

Ferritin at least over 70

Guidelines on weight suggest that you’re likely to need to be on at least 75mcg per day

52kg x 1.6mcg = 83.2mcg

Dose levothyroxine will need increasing SLOWLY having been left on far too low a dose a very long time

Rest of endocrine system will have to catch up

[Flamingo60 in reply to SlowDragon]

Hi SlowDragon

Folate Serum 36.2 (8.83 - 60.8)

B12 93 (37.5 - 188) (don't have a B12 serum result)

Vit D 88 (50 - 250)

Ferratin 65 (30 - 650)

Transferrin Saturation 23 (25 - 45)

When you say Levothyroxine will need to be increased slowly, how long between dose increase would be recommended?

[SlowDragon Administrator in reply to Flamingo60]

Bloods are done 6-8 weeks after each increase

If bloods don’t show ready for next increase, retest again in another 8-10 weeks

[Flamingo60 in reply to SlowDragon]

Many thanks for your help, it’s very much appreciated 😊

[SlowDragon Administrator in reply to Flamingo60]

High cholesterol frequently directly linked to low thyroid hormone levels

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[Flamingo60 in reply to SlowDragon]

thank you that’s really helpful information

[SlowDragon Administrator in reply to Flamingo60]

Please always add ranges on any results

Different labs have different ranges

[Flamingo60 in reply to SlowDragon]

Thanks for the tip

TSH 4.71 (mU/L 0.27 -4.2) T3 4.5. (Pmol/L 3.1-6.8) T4 15.8 (pmol/L 12 -22)

[SlowDragon Administrator in reply to Flamingo60]

FT4: 15.8 pmol/l (Range 12 - 22)

Ft4 only 38.00% through range

FT3: 4.5 pmol/l (Range 3.1 - 6.8)

Ft3 only 37.84% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

Most people when adequately treated will have Ft3 (active hormone) at least 60% through range……and often Ft4 (levothyroxine) will need to be 70-80% through range

For good conversion of Ft4 to Ft3 it’s essential to have good vitamin levels

Low vitamin levels linked to low Ft3

So it’s a vicious circle…..low vitamin levels results in poor conversion……poor conversion results in low vitamin levels