Concerned about TSH & T4 levels: My blood test... - Thyroid UK

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Concerned about TSH & T4 levels

Wilko91 profile image
11 Replies

My blood test results on 24/09/20 were TSH= 1.21 T4= 23.4. I was told to lower levothyroxine from 125mg to 100mg.

Follow up test 25/11/20 TSH= 0.86 T4= 22.6. Text today said reduce from 100mg to 75mg levothyroxine. Does this seem normal? I havent been feeling great for a few weeks . Particularly in the mornings i pep up after my medication a bit. Am i know Hyper in stead of Hypo. I do worry about levels set by laboritories. I was 22.7 T4 nearly 6 years ago was asked to reduce then. Feeling confused and fed up.

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Wilko91 profile image
Wilko91
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11 Replies
Wilko91 profile image
Wilko91

To add to this i have raised it with the GP surgery. I hope to hear from the GP later. I do have other issues CFS, bowel issues, back issues. So its kind of difficult to Pinpoint if i havent been feeling great because of those. Im a big bloke. Just want To be sure im on the right dosage.

Wilko91 profile image
Wilko91

Just a further point. My blood test was at 3 pm strange time of day!

SlowDragon profile image
SlowDragonAdministrator in reply toWilko91

Useless time to test.

Never ever agree to dose change based on late afternoon test

Plus important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Wilko91 profile image
Wilko91 in reply toSlowDragon

Thanks again SD. I raised T3 last time with my GP she said they dont do it. They dont do anything other than TSH & T4. I feel like im banging my head against a wall. If i get to speak to her later i will ask again about T3 and vitamin levels. I just dont get how after 10 years, this amount of change to dosage comes about, based on Lab levels. With no further testing? So reduced last time due to both readings being high? Reduced again due to T4 still being considered high?

SlowDragon profile image
SlowDragonAdministrator in reply toWilko91

Ask GP if you have ever had thyroid antibodies tested in past

Request vitamin D, folate, ferritin and B12 tested

You won’t get Ft3 tested on NHS

Vast majority of U.K. patients forced to test TSH, Ft4 and Ft3 privately

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH and Ft4 is completely inadequate

Were these tests done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels (and thyroid antibodies if not been tested yet)

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 do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

bluehorizonbloodtests.co.uk...

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/thyr...

Wilko91 profile image
Wilko91

Should have read in my first post “my T4 was 22.7 6 years ago. Was not told to reduce then. Remained on 125mg.

Farrugia profile image
Farrugia

Sorry to hear you're struggling with your GP. I'm not an expert at all but following advice from Slow Dragon and others on here has been really helpful for me. Getting private tests is expensive but for me it was the only way to find out what was really going on and to get good advice on here about the best way forward (Levothyroxine, vitamins etc). I see from a previous post your GP is also concerned about your cholesterol levels. I was in a similar situation and was under pressure from my GP to take Statins which I knew was a bad idea. Following advice on here that I probably needed a higher levothyroxine dose rather than statins I asked my Dr if I could try this. My levo was raised from 100 to 125 mcg and my cholesterol levels fell, in fact the nurse said she had never seen such a dramatic reduction in cholesterol levels. I would really recommend getting one of the range of private tests listed above - you probably won't get any progress with your GP. Good luck.

Wilko91 profile image
Wilko91 in reply toFarrugia

Thank you for your comments. I will look at getting a separate test for TSH FT4 & FT3. Though i do have a phone appointment with another GP, on Monday, so lets see.

tattybogle profile image
tattybogle

In order to understand the impact of fT4 results on dose decisions , you first need to understand about the lab ranges that come with the test. There are many different ranges fro fT4, depending on which machine was used at which lab. Over the years ive had about 6 different ranges used ranging from ft4 0.00 [12-22] to recently ft4 0.00 [7.9 -14]If you sent the same sample to 2 different machines you get a different result from each for the fT4 number , but it should be the same % of the way through the range.

eg. 17 [12-22] from one and 11 [7.9-14]

This could explain some of your questions about why a certain fT4 result from earlier test did not cause dose to be reduced.

But TSH level is also taken into account, and they do seem to like to use increasing age as an excuse to reduce dose .

Wilko91 profile image
Wilko91

Well interesting development. I decided to play ball and lowered to 75mg. Have been feeling generally rough achey tired. Continuing off from when i lowered to 100mg ( 2 months ago) i had a very productive telephone appointment with a GP today. Had a good chat raising my concerns particularly about dropping dosages twice in 2 months. He explained things really well, mentioning my body could have been using a higher dose of thyroxine than i needed because of other possible issues. So he is going to do further blood tests including the vitamin tests , Bone profile, amongst other things. To see if their are other issues other than the thyroid. ( i do have CFS, ulcerative colitis, and a knackered lower back) TPO, antibodies, T3 , will not form part of this test. But its a start. We did discuss my resuming 100mg but for more transparency and seeing i have already reduced to 75mg . I will stay on that dosage and see what the blood test shows ( if anything) Surprising what you can get! if you ask for it, ( raised the vitamins testing, and he said, absolutely) So lets see, feeling a bit happier now. Though still pretty knackered, and achey.

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