Undermedicated?: I am on 100mg Levothyroxine and... - Thyroid UK

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Undermedicated?

Stace268 profile image
19 Replies

I am on 100mg Levothyroxine and have anxiety and feels fast heart beat!? I weigh 15st and think I am undermedicated? I don't feel right concentration problems, anxiety, depression breathless no motivation tired no energy

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Stace268 profile image
Stace268
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19 Replies

Do you have any results to share?

Symptoms of over and under medication can be similar so it's impossible to tell without blood results.

Stace268 profile image
Stace268 in reply to

Last results were 1.66TSH that was 6 months ago

in reply to Stace268

Just testing TSH is useless.

We need TSH, T4, and T3.

Stace268 profile image
Stace268 in reply to

Doctors won't test T3 as their lab doesn't do it

in reply to Stace268

Recommend getting a private test then. Cheapest is £26.10 at monitor my health.

Stace268 profile image
Stace268 in reply to

Do I have to stop vitamins beforehand

in reply to Stace268

Only biotin and only for a week.

Check the ingredients of the supplements you take to make sure. :)

SlowDragon profile image
SlowDragonAdministrator

Request GP do new thyroid test including vitamin D, folate, ferritin and B12

Which brand of levothyroxine are you currently taking

Do you always get same brand

Book thyroid blood test early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Do you have autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies

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

List of private testing options and money off codes

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins 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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Stace268 profile image
Stace268 in reply to SlowDragon

I have Mercury pharma written on prescription so try and get that from pharmacist. I'm on Vitamin D supplements, selenium is non existent and TPO is 0 or doesn't show up had Dio2 test done said TT wildtype genotype , now looking whether should get Dio1 tested or just concentrate on poor T4 to T3 conversion, cholesterol above range and MCH slightly above range on several occasions , Nucleated RBC 0, had standardised diabetic test done and negative also spontaneous high cortisol which I'm guessing is due to undermedicated and poor conversion

SlowDragon profile image
SlowDragonAdministrator in reply to Stace268

first step is to get FULL thyroid and vitamin testing

You need BOTH TPO and TG antibodies tested

NHS refuses to test TG antibodies unless TPO are high

So would need to use Medichecks or Blue horizon to get testing including both antibodies

Likely you are under medicated on only 100mcg

Come back with new post once you get results

What vitamin supplements are you currently taking

Remember to stop taking any supplements that contain biotin 5-7 days before test

Otherwise just take supplements up to day before test

Test early Monday or Tuesday morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Stace268 profile image
Stace268 in reply to SlowDragon

I've already been diagnosed with hypothyroidism and seeing a specialist in February which is going take me 2hrs drive to get there think I need get Dio1 tested as even though they have gene department there they may not do it, I been referred for cushings but I do not have all the symptoms of that and I don't believe it is cushings as cortisol is spontaneous

Stace268 profile image
Stace268 in reply to SlowDragon

Tpo

TPO results
SlowDragon profile image
SlowDragonAdministrator in reply to Stace268

you need to get TSH, Ft4 and Ft3 tested before consultation

And strongly recommend getting vitamins tested too

And test TG antibodies

Significant minority of Hashimoto’s patients only have high TG antibodies

Most likely you’re just under medicated and low vitamin levels

Waste of your time going to a consultation without full thyroid and vitamin results with you

Stace268 profile image
Stace268 in reply to SlowDragon

Did you see my results I just posted? also thanks

tattybogle profile image
tattybogle in reply to Stace268

if last TSH was 1.66 (6 months ago) .. and that was on 100mcg levo?

have you seen GP following those results to request an increase in Levo dose to either 112.5mcg or 125mcg ?

With TSH 1.66 an increase in Levo would be the obvious thing to try to see if it improves symptoms . although you really would be better to have CURRENT fT4 fT3 tests done at same time as TSH to see what is really going on . (and especially important to have current FT4/ fT3 / TSH results before paying to see anyone.)

Use this list of references which advise GP's to keep TSH below about 2 / 2.5 in patients on Levo . healthunlocked.com/thyroidu...

Stace268 profile image
Stace268 in reply to tattybogle

Their lab won't test T3 if others are in range, such a coincidence!

tattybogle profile image
tattybogle in reply to Stace268

Most NHS labs won't test fT3 even if specifically asked for by GP.

You'll be banging your head against a brick wall for months trying to get NHS to do it when you want it done .. and even if they do, they might then decide not to do fT4 with it .

The easiest way is get TSH / fT4 / fT3 done together, for yourself as economically as possible. if you need vitamins done too it's more costly , but just those three can be done for less than £30

SlowDragon profile image
SlowDragonAdministrator in reply to Stace268

last test iron there is Dec 21 taken in afternoon

You need to get new test early morning, and last dose levothyroxine 24 hours before test

SlowDragon profile image
SlowDragonAdministrator

15st = 95kilo

95kg x 1.6mcg = 152mcg as likely daily dose levothyroxine required

suggest you request 25mcg dose increase in levothyroxine now up to 125mcg daily

And retest thyroid and vitamin levels in 6-8 weeks

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.

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