Advice wanted

[sunsation1]

My latest tests show my T4 is elevated at 32 I have no thyroid was removed 31 years ago. My t3 and tsh are wishing normal range I feel awful haven’t worked for 8 weeks losing will to live at the moment. All gp has done is drop my levo down by 50mgs please can anyone help. Suffering with chronic fatigue body aches specially legs ankle swelling dizziness etc

[pennyannie]

Hello Sunsation and welcome to the forum :

It reads as though your T4 is over range which likely means your body isn't well able to convert the T4 into T3 which is the active hormone which the body runs on.

Do you have the full results there of your T3 and T4 results and ranges as well as a TSH ?

No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin d are maintained at optimal levels so this might be the first step in your journey back to better health.

The fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

It is imperative that you are dosed and monitored on your T3 and T4 blood test results with the intention to have these two vital hormones balanced within the ranges at around a 1 / 4 ratio T3 / T4 :

We do need more information to say anything sensible and look forward to the full details of this last blood test.

[SlowDragon Administrator]

Are you sure you had full thyroidectomy, not just half?

What was reason for thyroidectomy

How much levothyroxine were you taking

What were TSH and Ft3

Was test done soon after taking levothyroxine if so you would have falsely high Ft4

If so Ft4 of 32 might be absolutely fine

What vitamin supplements are you currently taking

Low Vitamin levels tend to result in poor conversion of Ft4 to ft3, results in high Ft4 and very low Ft3

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, and we need good vitamin levels on levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you did your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Usually would only reduce levothyroxine by 25mcg

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

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

[e-mail]

[sunsation1 in reply to SlowDragon]

I had full thyroid out and have had all blood tests i can have with gp and private apart from high T4 all were OK

[SlowDragon Administrator]

So FT3 is absolutely fine

TSH fine

Not over medicated unless FT3 is over range

I assume you took Levothyroxine before test

Were you feeling ok BEFORE dose was reduced

Do you always get same brand Levothyroxine at each prescription

You need to test vitamin D, folate, ferritin and B12

Either now or do Medichecks or Blue horizon or Thriva 6-8 weeks after dose reduction

50mcg reduction is vast

Probably didn’t need any reduction…. Or at most 12.5mcg reduction 3 or 4 days a week

Please edit photo and remove your name & dob

[sunsation1 in reply to SlowDragon]

Have removed photo that’s easier as couldn’t edit My T4 is still high though all my other bloods were deemed normal I have felt unwell for 3 months now not able to work or anything. I was in hospital last week where I was found to have a 14 mm spot on my left adrenal gland so have been tested for cortisol issues as well

[SlowDragon Administrator in reply to sunsation1]

So did you feel bad BEFORE dose levothyroxine was reduced

Or only since dose reduction

If dose levothyroxine is ever reduced it should be reduced EXTREMELY slowly, in TINY steps

When dose is reduced, adrenal glands have to try to compensate for lack of thyroid hormones. Often leads to adrenal exhaustion

Reducing by 50mcg was a ridiculously enormous reduction

[sunsation1 in reply to SlowDragon]

Dose has been reduced in last weeks and I was feeling really ill before

[sunsation1 in reply to SlowDragon]

Blood test

Blood results

[SlowDragon Administrator in reply to sunsation1]

How long since dose was reduced

How much were you taking originally

What were vitamin D, folate, ferritin and B12 results (if tested)

How much do you weigh in kilo approx

Guidelines on dose levothyroxine by weight is 1.6mcg per kilo as likely guide. Some need more

Bloods should be retested 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

Likely to see you are now very hypothyroid and adrenals out of kilter

[sunsation1 in reply to SlowDragon]

Ps vitamin d is 170 at mo

[SlowDragon Administrator in reply to sunsation1]

Bit high? Do you also supplement magnesium

[sunsation1 in reply to SlowDragon]

No I dont

[SlowDragon Administrator in reply to sunsation1]

Presumably you supplement vitamin D

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Do you take Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

[sunsation1 in reply to SlowDragon]

No K2 or magnesium

[sunsation1 in reply to SlowDragon]

I weigh 66KILOS

[SlowDragon Administrator in reply to sunsation1]

So how much levothyroxine were you taking before dose was reduced

Approx age? Pre or post menopause?

Conversion of Ft4 to Ft3 often goes haywire after menopause

66 kilo = approx 105mcg per day as likely dose required

But many people need higher dose than guidelines

That’s 725-750mcg per week

Had you recently had change in brand of levothyroxine

[sunsation1 in reply to SlowDragon]

I was on a 150mg and finished menopause 10 years ago always been on accord

[SlowDragon Administrator in reply to sunsation1]

Well you might have needed to reduce levothyroxine dose, but that’s an enormous drop from 150mcg to 100mcg

Adrenals are probably trying to compensate

Do you feel worse in morning and improve a little by evening?

That suggests adrenals

[sunsation1 in reply to SlowDragon]

No I feel ropey all day when I try to sleep I feel wired

[sunsation1 in reply to SlowDragon]

Dose also only been dropped last 2 weeks have been ill 3 months nearly

[humanbean]

Your haemoglobin matches the bottom of the range suggesting that you are verging on being anaemic.

Do you have any results for ferritin or serum iron or vitamin B12 or folate?

[sunsation1 in reply to humanbean]

Result

Picture

[humanbean in reply to sunsation1]

Just realised I never commented on these results...

Your B12 would be better being top of range, or even as high as 1000ng/L. Reference ranges for vitamin B12 in the UK are shockingly low. A good quality B Complex may be all your need to raise it, but if that doesn't work then taking an additional supplement of methylcobalamin would be worth doing, although you may only need one bottle to optimise B12.

You might find this link of interest :

stichtingb12tekort.nl/engli...

Optimal for folate is upper half of the range i.e. roughly 20 - 27 with the range you've given, so yours is too low. The same advice given for B12 applies to folate - taking a good quality B Complex should help with the addition of one bottle of methylfolate to raise it to begin with, then hope the B Complex will maintain it for you. I take a B Complex every day but also take methylfolate permanently, but just a couple of days a week because I can't keep my folate levels up.

chriskresser.com/folate-vs-...

As for your ferritin (iron stores) - Optimal for your reference range is roughly 80 - 120 ng/L or 90 - 110 ng/L.

You can try to raise your iron levels with food. Iron is poisonous in overdose so be very, very cautious if you supplement, and always keep any iron-related test result in range.

Some links you might find helpful, in no particular order :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

medichecks.com/iron-tests/i...

thyroiduk.org/help-and-supp...

cmaj.ca/content/cmaj/184/11...

restartmed.com/hypothyroidi...

rt3-adrenals.org/Iron_test_...

[sunsation1 in reply to humanbean]

Thank you

[sunsation1 in reply to humanbean]

Levels above