TSH and Levothyroxine help

[ACKER_]

My TSH in November 2023 was 6.92 mlU/L whilst on 100mg Levothyroxine. My GP increased my dose to 125mg. Repeat TSH March 2024 is 0.106 mlU/L. Awaiting my GP appointment but wondering how an additional 25mg of Levo has taken my TSH result from one side of the normal range scale to the other?

[pennyannie]

Hello Acker and welcome to the forum :

Once on T4 - Levothyroxine thyroid hormone replacement we generally feel best when the TSH is down towards the bottom of the range and at least under 2 :

Hypo symptoms will be returning with a TSH over 2 and years ago we started treating people with T4 once their TSH went over 3 -

Once on T4 - we should be dosed and monitored on our Free T3 and Free T4 readings as the TSH is a diagnostic tool and once on thyroid hormone replacement - a TSH seen in isolation a very misleading indication of anything.

It seems you were not utilising or absorbing well the medication - do you take it on an empty stomach with a glass of water and wait an hour before eating or drinking anything - did you change your routine for this follow up blood test ?

Do you take the T4 away from all other medications and on the day of the blood test arrange a thyroid fasting, early morning appointment and leave around a 24 hour window from last dose of T4 to blood draw ?

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal - do you have any current readings for ferritin, folate, B12 and vitamin D.

I see you have other health issues - so we need more information to help understand better what is going on.

Is the cause of your hypothyroidism - auto-immune and do you have Hashimoto's ?

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Were both tests done early morning

And which brand levothyroxine are both tablets

Is your hypothyroidism autoimmune?

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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)

Recommended that all 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

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

[helvella Administrator Thyroid UK]

If we ignore all other possibilities, like season, weather, environment, food, exercise, etc., just look at the arithmetic and doses.

Imagine you actually need 112.5 - spot in the middle between your previous and current doses. At 100, every day you are falling short. The 100 you take that day is not enough so some of the T4 in your blood gets used up and FT4 drops, and TSH rises.

Then you start taking 125 every day. Starts out fine because you are, at last, catching up with what you need. Each day, the T4 in your blood rises a tiny bit, and as a consequence, TSH drops a tiny bit.

Maybe after a couple of months, you reach the point at which you have enough T4, and TSH sits somewhere around 1.0.

But you keep taking 125, which is now more than you need. An extra 12.5 every day. And continue for another couple of months. After two packs, 56 days, you have taken 700 micrograms of T4 more than you need.

I'm sure your body manages to get rid of some of that excess, but if your blood T4 is now even a touch high, your TSH would be expected to drop. And each day your T4 is high, the TSH might drop a little bit more. Eventually you reach some sort of balance point with TSH at 0.106.

I speak as I found. I was on 100 and it was not enough. I went to 125 and found it too much. I dropped to 112.5 (tried 12.5 tablets which I could not tolerate, alternating between 100 and 125, and splitting 25 tablets) and was much better talking 112.5 every day.

I continued with that for years but, eventually, found I did need to increase to 125 every day. Which is where I am now.

As with old-fashioned kitchen balance scales, a few grains of sugar can tip from under to over. Even when the amount of sugar is so small it wouldn't affect the cake!

But with T4 that little amount extra, every day, has a cumulative effect.

I am aware that this is a extremely blinkered and limited view. But it does reflect my personal experience.

And as we approach our individual optimum dose, any adjustments should be small, even smaller than the smallest tablet.

If only we could check our levels every day and see when we are slightly below or above.

[crimple]

ACKER I am very much like helvella with respect to sensitivity to too much levo and it can be a real pain cutting tablets and having to remember alternate day dosing. Hoping Vencamil soon get approval for their 25mcgm, 50 mcgm and 75 mcgm tablets