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Tigertummy profile image
28 Replies

I’m currently taking levothyroxine - 75 4 days a week and 100 3 days a week. Latest test results are T4 21.7 and TSH 1.92. Time to change my dosage or continue? I can’t get an appointment with anyone sensible now for over a week

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Tigertummy
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28 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Please add reference ranges for each test - numbers in brackets after your result. These are important as vary from lab to lab.

Your TSH is only just under 2 and most people feel well when it is at or just under 1 so you probably do have room for a small increase.

What time of day was your test and when did you take your last Levo dose before the test?

What are you supplementing with?

What are your latest results for ferritin, folate, B12 & D3?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Tigertummy profile image
Tigertummy in reply toJaydee1507

T4 21.7 normal range 11-21.2

TSH 1.92 normal range 0.27-4.20

Blood test was at 9am, I look my meds at 6am.

Ferritin 56 normal range 13-150

No results for the others

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

Blood test was at 9am, I look my meds at 6am.

So Ft4 is falsely high

ALWAYS take last dose Levo 24 hours before test

Save your dose until AFTER the blood test

Just testing TSH and Ft4 is completely inadequate…but all majority of GP’s will test

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

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

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Kimkat profile image
Kimkat in reply toSlowDragon

I saw my GP earlier this week and when I questioned him as to why the nhs don’t test for T3 anymore his reply was that they will only test if your TSH is out of range. I felt a bit cheeky and said, what if you don’t have a thyroid to stimulate? His face was a picture, he was totally stuck for words 🤭, after a couple of seconds, he said I needed to take that up with my endo, to which I replied that I haven’t got one. He looked a bit flustered 😄

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

Ferritin 56 normal range 13-150

Ferritin on low side

Aiming for at least 70 minimum

FancyPants54 profile image
FancyPants54 in reply toTigertummy

Your GP most likely won't increase your meds with a FT4 over range. Which is why we always leave 24hrs after last meds and the blood draw. So now you are a bit stuck. Unlikely to get the raise I assume you feel you need?

You might need to wait a while and ask for a repeat test (make something up about feeling really tired and cold) or you could book your own private test as SlowDragon has informed you. Test to the proper timing and then go and talk to your GP with your new test results and hope the will give you an increase.

Tigertummy profile image
Tigertummy in reply toFancyPants54

I don’t know if I need more or less. I just have odd symptoms and no one can tell me why

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

Likely affected by propranolol

Look at continuing to SLOWLY reduce dose propranolol

Low Ft3

You need TSH, Ft4 and Ft3 tested together….last dose Levo 24 hours before test

But propranolol will cause false high Ft4

Low Ft3 results in low vitamin levels

Request GP test vitamin D, folate and B12

Work on increasing ferritin by increasing iron rich foods in your diet

Get thyroid antibodies tested for autoimmune thyroid disease

Assuming your hypothyroidism is autoimmune

get coeliac blood test

Possibly gluten intolerance and/or dairy intolerance

TSH110 profile image
TSH110 in reply toTigertummy

Your TSH is quite high for someone on thyroid hormones. It should be under 1 and probably well under one. My endo aimed for 0.2-0.5. My guess is you are undermedicated and need an increase in Levothyroxine . Pity you took your meds as it raised the T4 and they’ll most likely claim the results are fine…,yes even if you don’t feel fine - medicine gone mad I’m afraid. Thyroid uk admin have an item in Pulse (doctors magazine) where Dr Toft gives values that should be followed (but seldom are) to reach a euthyroid state (ie no more symptoms) you could try giving a print out to your gp highlighting the values in qu 6 to try and get a dose increase. Toft is an eminent endocrinologist he’s retired now but was surgeon to the queen when she was in Scotland. His credentials are cast iron.

info is in second paragraph:

healthunlocked.com/thyroidu...

it says:

"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.

(You’re nowhere near yet)

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

(you’re at the upper part of the range not elevated)

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)."

(they dont bother testing this 🙄 it would have been helpful to know )

Jaydee1507 profile image
Jaydee1507Administrator in reply toTigertummy

So according to your TSH you have room for improvement and an increase in Levo to bring it just under 1.

However, the effect on your FT4 of taking Levo 4 hours before the test means that the test measured what you had just taken, as there was no time for it to settle, and its showing as just above range.

Because your FT4 is above range, your GP is unlikely to agree to an increase and may even want to reduce your dose. If that happens then ask to retest as soon as they will allow and next time be sure to allow the full 24 hours (not more) between last Levo dose and the test time. I find it helpful to write a note in my calendar to remind myself.

It is essential that all key vitamins are at OPTIMAL levels for our thyroid hormone to work well.

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Suggest you get some private blood tests run or see if GP will run tests for folate, B12 & D3.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Tigertummy profile image
Tigertummy in reply toJaydee1507

thank you

Jaydee1507 profile image
Jaydee1507Administrator in reply toTigertummy

I meant to stress that you should refuse to lower your dose until you have retested (with the correct timing).

SlowDragon profile image
SlowDragonAdministrator

Your previous post

Explained then it’s essential to take last dose levothyroxine 24 hours before test

healthunlocked.com/thyroidu...

Request GP test B12, folate and Vitamin D

And thyroid antibodies for autoimmune thyroid disease

Tigertummy profile image
Tigertummy in reply toSlowDragon

Thanks for all the help. I couldn’t risk waiting so long to eat breakfast as I had children to drop off before the blood test and have been feeling lightheaded and faint recently

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

Ok …..but don’t take your levothyroxine until after test

TSH will be lower if you eat before test

Tigertummy profile image
Tigertummy in reply toSlowDragon

Just been reading another post on here. I’m taking 40 propanolol daily… could that be impacting?

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

Yes very much so

Why are you on propranolol?

You must NOT stop propranolol suddenly

It has to be weened off incredibly SLOWLY

Propranolol

pubmed.ncbi.nlm.nih.gov/168...

rejuvagencenter.com/hypothy...

escardio.org/Journals/E-Jou...

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

It will lower Ft3 and magnesium

I was stuck on propranolol 20 years…..more on my profile

Took 6 months to slowly reduce then stop 40mg propranolol

Tigertummy profile image
Tigertummy in reply toSlowDragon

Thanks! I’m on it for anxiety. I was on 80 but only just dropped down to 40. Although the anxiety is improved it’s made me feel awful in other ways

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

I was also taking it originally for anxiety

Anxiety is classic hypothyroid symptom. Medics tend to only associate it with hyperthyroid

For me (and many others) cutting gluten out completely……anxiety completely went

as you have endometriosis, presumably your hypothyroidism is autoimmune usually diagnosed by high thyroid antibodies - also called Hashimoto’s

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Singwell profile image
Singwell in reply toSlowDragon

That is so interesting re anxiety and the gluten free diet. I suspect I'm intolerant and would like to see off the anxiety.

Contra21 profile image
Contra21 in reply toTigertummy

I've been feeling that for 6 months. Ask no are good . With no thyroid it's a battle for the right numbers never stay the same

Tigertummy profile image
Tigertummy

I think I had a test that said it wasn’t autoimmune. I think I might be perimenopausal as I have a lot of the symptoms - blood tests have come back fine though

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

You need to test BOTH TPO and TG antibodies

NHS won’t test TG (thyroglobulin) antibodies unless TPO are high

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Tigertummy profile image
Tigertummy in reply toSlowDragon

Just got these results through

B12 509 normal range 197-771

Folate 16.7 normal range 3-20

Ferritin 56 normal range 13-150

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

So next steps

Discuss with GP lowering and eventually stopping propranolol.

Taking different anxiety medication if necessary

Get TSH, Ft4 and Ft3 plus both thyroid antibodies tested privately

Ensure last dose levothyroxine is 24 hours before test and test as early as possible in morning, ideally only water to drink before test. Do test on a Monday or Tuesday morning

No vitamin D test result?

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

work on increasing iron rich foods in your diet to improve ferritin at least over 70

Consider trialing strictly gluten free diet too

Tigertummy profile image
Tigertummy in reply toSlowDragon

Finally got my thyroid levels tested again - t4 19.2 normal range 11-21.2 TSH 2 normal range 0.27-420. My TSH seems to be creeping up

SlowDragon profile image
SlowDragonAdministrator in reply toTigertummy

Obviously doesn’t tell you anything without Ft3

And you need to test BOTH TPO and TG antibodies

Are you now completely off propranolol?

Have you started strictly gluten free diet

No vitamin D test result

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Tigertummy profile image
Tigertummy

Still weaning myself off propanolol. Can’t afford to do any private testing. Tried and failed at gluten free diet. Now on HRT for perimenopause

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