Help, break through symptoms but ‘normal’ nhs b... - Thyroid UK

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Help, break through symptoms but ‘normal’ nhs blood test results..

LouM29 profile image
6 Replies

hi all

I’m new here and trying to understand more about hypothyroidism. I have been diagnosed for 3-4 years now and constantly needing an Increased dosage of levythroxine to manage breakthrough symptoms

My symptoms are back and having been getting worse. I got a blood test at drs and have been told results are normal so no action is needed:

Tsh 2.54

T4 11.9

can anyone help/advise what to do next?

thanks

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LouM29 profile image
LouM29
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6 Replies
SeasideSusie profile image
SeasideSusieRemembering

LouM29

Can you please add the reference ranges for your results, these vary from lab to lab so we can't interpret your results without them, especially the FT4 as ranges we frequently see here are

7-17

9-19

11-23

12-23

plus others

so depending on your range it could be low or mid-range, it's unlikely to be high in range.

However, we always advise doing thyroid tests as follows:

Always advised here, when having thyroid tests:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

TSH range doesn't vary much and we can tell you that a TSH of 2.54 is high. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their range if that is where you feel well. There are guidelines to this effect which you can point out to your GP:

From GP Notebook

gpnotebook.com/simplepage.c...

Target level for TSH during thyroxine therapy

Fine tuning of the dose could be necessary in some patients

* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

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

In the two above cases the upper level is not the aim, the aim is to feel well and that means you can be anywhere between the lower and upper levels, whatever is necessary for you.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"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 confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of the article which contains this quote from ThyroidUK

Email : tukadmin@thyroiduk.org

and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.

Testing just TSH and FT4 is inadequate. T4 has to convert to T3 and T3 is the active hormone that every cell in our bodies need, so testing FT3 is actually the most important test but unfortunately it's rarely done and doctors don't even recognise it's importance.

Also important for thyroid hormone to work properly is having optimal nutrient levels so it's important to test

Vit D

B12

folate

ferritin

You are welcome to post these results/ranges if you have them and we can comment further.

Jaydee1507 profile image
Jaydee1507Administrator

It does help if you add the reference range to your test results as otherwise it's just a number with nowhere to place it. Anyway, I can safely say that although your results fall within the normal range your TSH is above 2 which means you are still hypo.

Make an appointment with your GP to discuss the results and tell them that you don't feel well and why, then push for an increase in dose.

Optimal vitamin levels are also important to us hypo folk. See if you can get your GP to test your levels of Ferritin, folate, B12, D3. If not then there are private companies you can get to test your levels.

SlowDragon profile image
SlowDragonAdministrator

Please add ranges on Ft4 (looks low)

How much levothyroxine are you currently taking

Was this test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Roughly how old are you

Essential to test vitamin D, folate, ferritin and B12

Are you currently taking any vitamin supplements

Have you had thyroid antibodies tested?

About 90% of primary hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies

LouM29 profile image
LouM29

Hi all, thank you so much for your responses! The blood test was done at 9:40am - will make sure it’s earlier going forwards!

I currently take 100mg of levythroxine and supplement my diet with a multivitamin and vit d. I am 28 female.

I didn’t ask for the range as wasn’t aware of this but have an appointment with the dr this afternoon so you advise to push for an increase is really helpful! I will also ask for the range for t4.

What is the correlation between the TSH and T4?

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to LouM29

Was last dose levothyroxine 24 hours before test?

Approx how much do you weigh in kilo

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.

So Ft4 result should be towards top of range …..at least 60% through range if not higher

Without range we can’t advise on Ft4 result…..lab ranges vary

Most common is 12-22 …..so your result would be low

TSH is definitely too high

On levothyroxine TSH should always be below 2

Most people when adequately treated will have TSH around 1 or less

See all these references

healthunlocked.com/thyroidu...

ESSENTIAL To test vitamin D, folate, ferritin and B12 at least annually

Jaydee1507 profile image
Jaydee1507Administrator in reply to LouM29

People here don't recommend multivitamins as they often contain not enough of cheap ingredients, the combination of which might prevent you absorbing some, also inactive forms which many people cannot use properly. Better to test the important vits and supplement what you need individually.

Which multivit is it please?

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