Help with understanding my TSH levels from bloo... - Thyroid UK

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Help with understanding my TSH levels from blood tests

Upanddownlady15 profile image
9 Replies

Hello

66 year old female. HRT 15 years. CFS? but now doubted.

I was 'finally' diagnosed as being hypothyroid about 18 months ago after probably having it for years. I was previously told I had CFS. I was started on 50mg of levothyroxine as normal. Eventually twice after a few months my fatigue was returning (and hair loss) to which end I was taking 125mg daily.

I was on 125mg of levothyroxine each morning for 3 months . Mostly I felt well, but I was also feeling a bit hyperactive, nervy, getting headaches problems sleeping and diarrhoea a couple of times a week.

I took a private (Monitor my Health) blood test 7 weeks ago and the readings were:

T3 level - 5 (range 3.1-6.8)

T4 level - 20.5 (range12-22)

TSH level - 0.28 (range 0.21-4.2)

Anti-body test negative and normal.

Since this test I lowered my dose myself to 100mg of levothyroxine. Now I am suffering with sweating in the evenings (clothes and hair wet) most afternoons or evenings once a day for the last month , and also I am suffering with diarrhoea over the last month every other day.

I have now just had a new test done via my GP and these are the results (T3 not tested):

T4 level - 12.8. (range 7.90-14.40)

TSH level 0.34 (range 0.38-5.33) - Result Satisfactory continue with dose.

I would be most grateful if these results could be interpreted as I do not know if I am overdosing or underdosing, or just right. As the latest TSH is just under range, and the private test was low, end of range, does this mean I need to up or lower the dose. Thank you.

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9 Replies
SlowDragon profile image
SlowDragonAdministrator

T3 level - 5 (range 3.1-6.8)

T4 level - 20.5 (range12-22)

TSH level - 0.28 (range 0.21-4.2)

Anti-body test negative and normal.

Since this test I lowered my dose myself to 100mg of levothyroxine.

Why did you lower dose

These results didn’t show over medicated

Suggest you get FULL thyroid and vitamin testing done now privately via Medichecks or Blue horizon after 8-10 weeks on 100mcg

Which brand of levothyroxine are you currently taking for 100mcg tablet

Which brand was 25mcg tablet

What vitamin supplements are you taking, if any

Important to test BOTH thyroid antibodies plus vitamin D, folate, ferritin and B12

Low B12 can cause sweating

thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

Upanddownlady15 profile image
Upanddownlady15 in reply toSlowDragon

Hi Slowdragon

Thank you for your prompt reply.

I tested in morning before taking meds as advised on here.

As mentioned I reduced my dose from 125mg to 100mg because mostly I felt well, but I was also feeling a bit hyperactive, nervy, getting headaches, problems sleeping and diarrhoea a couple of times a week.

I take B and D vitamin as well as a multi vitamin each day.

100mg Levo is Accord and 25mg Levo is Mercury.

I am interested in understanding how to interpret the low TSH reading; is this good or bad?

SlowDragon profile image
SlowDragonAdministrator in reply toUpanddownlady15

multivitamins never recommended on here

At best a waste of money, but as most contain iodine this can make thyroid issues worse and never supplement iron unless tested full iron panel test for anaemia and found in need

Essential to stop vitamin B complex 5-7 days before all blood tests as contains biotin

Biotin can falsely affect test results

How long had you been taking 125mcg when you tested

As mentioned I reduced my dose from 125mg to 100mg because mostly I felt well, but I was also feeling a bit hyperactive, nervy, getting headaches, problems sleeping and diarrhoea a couple of times a week.

If you did need to reduce dose…..reducing by 25mcg is a large drop and will invariably cause several weeks/months of instability

TSH is extremely unreliable at best of times, but once on replacement thyroid hormones it’s even more useless

Most important results are

1) symptoms

2) Ft3 levels (active hormone)

3) optimal vitamin levels and if you have high thyroid antibodies (hashimoto’s)

4) Ft4 levels (levothyroxine)

Upanddownlady15 profile image
Upanddownlady15 in reply toSlowDragon

So basically my test result is OK then?

I do wonder if slowdragon is an AI bot as replies to many posts on here are very similar and it appears that slowdragon does not read the initial email.

SlowDragon profile image
SlowDragonAdministrator in reply toUpanddownlady15

Eventually twice after a few months my fatigue was returning (and hair loss)

Hair loss suggests low ferritin and/or low magnesium

And ….I did read your first post very carefully

This A1 bot (not) now going off to cook my dinner

beh1 profile image
beh1

The final tweak to your sweet spot can take some time and effort. We each have a different level of ft4 and ft3 at which we feel well. If you still have diarrhoea and sweating, perhaps you could try a dose a tiny bit lower? But beware of the extreme tiredness you have obviously suffered from.

Trial and improvement…

But I’m most definitely not an expert on anyone but myself, so other opinions should be taken into account. Best wishes.

TiggerMe profile image
TiggerMeAmbassador

Your results didn't look too bad in either test but by lowering your levo it will have lowered your fT3 which might be why you are feeling worse, I would suggest you maybe split your dose morning and evening which might help smooth things out a bit and possibly improve your conversion? Then you have the option of adding in an extra 25mcg once or twice a week to see if you can find the elusive sweet spot...

I think timing is almost as important as dose when trying to fine tune things 🤗

Could it also be that your HRT needs adjusting, progesterone raises your temperature as does low sodium?... too much HRT effects thyroid hormone

Sweating and diarrhea can also point to adrenal issues? rt3-adrenals.org/low_cortis...

p.s. Love the AI bot comment 🤣 years of tried and tested good solid info from          SlowDragon she IS the original bot... it's a lot to take on board but everything you need is there to start your thyroid apprenticeship 😉

tattybogle profile image
tattybogle

TSH ,,, is useful in one sense once we are taking thyroid hormone , and that is to see whether 'your' TSH has gone up or down .

Being over than range for TSH is a clear sign to increase dose, and applies to everyone , most people taking thyroid hormone do better when TSH is in the lower half of the range rather than the top half. and there are plenty of recommendations to GP's to keep it at the lower end : healthunlocked.com/thyroidu.... (my-list-of-references-recommending-gps-keep-tsh-lower-in-range)

But being under the range doesn't always mean overmedication.

It can mean overmedication for some people , but definitely not for everyone .

Some people need a dose of thyroid hormone that takes TSH a bit under range in order to feel well , and if they try to lower dose to keep TSH in range they are undermedicated.

This is because the higher ratio of T4 we have once we take Levothyroxine leads to a downward shift in where the TSH sits (explanation here if you want the science : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.)

to asses if below range TSH means overmedication, or not you have to look at whether 'your' TSH is lower than it was when you felt ok on thyroid hormone .. and also at what symptoms you have.

If the TSH is lower than where you felt well AND you have symptoms that point to overmedication, then yes, in that instance a slightly below range TSH means it's a good idea to try a very slightly reduced dose .

But, if the TSH is a bit under range and you FEEL WELL on that dose , no symptoms of overmedication , fT4 and fT3 are within range , then in that instance a below range TSH doesn't mean a dose reduction is needed.

Ideally we want to try to keep the TSH at least 'measurable' as opposed to 'totally supressed', so anything over about 0.04 is nothing to worry about IF you feel well there with no symptoms of overmedication, and T4 /T3 are in range .

Some GP's won't agree with this , and will freak out the minute it goes under range even an little bit, but there is very solid evidence that there are no increased risks while it stays over 0.04 here : healthunlocked.com/thyroidu... (useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk)

Since you don't have a previous 'feel good' place on Levo to compare your current TSH level to , you have to go mainly by symptoms and how high fT4 / fT3 are.

Your symptoms certainly point to your dose still being a little bit too much.

if it was me i would reduce again VERY slightly to 87.5mcg mcg , and assess how that feels after a few weeks .and then retest after 6 wks if you still feel not ok.

( 87.5mcg = either 75mcg one day/ 100mcg the next ...or cut a 25mcg in half to get same dose each day if you prefer).

Upanddownlady15 profile image
Upanddownlady15

Thank you for all the replies which have given me ideas how to proceed.

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