is It normal for thyroxine levels to decrease o... - Thyroid UK

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is It normal for thyroxine levels to decrease on 50mg?

Hoop1888 profile image
11 Replies

hi all,

I am due a blood test to check my thyroxine levels after being put on 50mg (which I pushed for) a couple of months ago.

My question is, is it normal for TSH to increase or t4 to reduce after the initial dose? I thought so based on the fact levo replaces your natural thyroxine. I’m also not feeling that great and hoping that it’s related to me being on a lower dose than I should be, but can’t be sure as haven’t had blood test. My hair has also thinned out a lot and I find myself struggling to get the weight off more than usual.

When I went to the docs for something else, my doctor told me that I had enough thyroxine in my body (even though TSH was at 9), basically low key suggesting I shouldn’t have been put in thyroxine yet. It kind of infuriates me when they completely ignore symptoms/my TSH plus fact my t4 levels have always been on the cusp of being out of range.

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11 Replies
SlowDragon profile image
SlowDragonAdministrator

Reading through your previous posts

You have high thyroid antibodies and TSH was 9

So clearly autoimmune thyroid and hypothyroid

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

50mcg is only standard starter dose

You’re highly likely ready for next increase in dose to 75mcg daily

Which brand of levothyroxine are you currently taking

Best to stay on same brand as dose is increased

Many people find different brands are not interchangeable

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

Book early morning test

 Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

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

What vitamin supplements are you currently taking

Request vitamin levels tested if not been tested for 6-12 months

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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

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...

If you can get GP to test vitamins 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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

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...

meme profile image
meme

my TSH went up when I was first started on Levo before dropping at the next tests.

TSH110 profile image
TSH110 in reply to meme

To feel well most people on Levothyroxine need a TSH of between 0.2 and 0.5 and free t 4 and Free t3 in the upper third of their ranges (or t4 and t3) . Ask for a print out of your results from the reception every time including those and from now on. Your doctor is talking absolute nonsense, aTSH of 9 is totally unacceptable. The aim it’s to get to optimised not get TSH just below 10. Can you see someone else at the practice who is not totally clueless? Otherwise email thyroid U.K. admin and ask for the pulse article question 6 where Dr Toft (an eminent and highly respected endocrinologist) gives these numbers highlight them and put them in front of you doctor and say that is what you want him to aim for, not a TSH of 9. Say you found them on thyroid U.K. which is recommended by NHS Choices. If he still gibs just drop in what was good enough for the Queen is good enough for you, thanks very much (he was surgeon to the Queen when she was in Scotland, he’s retired now). Hopefully that might get this idiot to start actually addressing your symptoms and initiating correct optimisation of the thyroid hormone therapy. To be honest if you can ditch them I would, this sort of doctor wrecks our health and lives when they have the power to improvement them but choose not to - ignorance is no excuse on 100k a year.

What may have happened with your meds is they have caused the thyroid to drop production further so you really need at least 25mcg increase and probably more like 50 to 100mcg, but it is normally done in 25mcg increments as t4 has a long half life, so builds up gradually in your system for about 6 weeks. It means you need to go gradually so you don’t overshoot the optimisation mark. It’s a pain, but your man has simply omitted the optimisation process altogether whilst happily gaslighting you and effectively leaving you poorly forever. He is lazy in his practice and completely incompetent. It makes me mad just hearing it. How do they even qualify to practice ?

Good luck with your Tom fool of a doctor

☘️🍀☘️

Jaydee1507 profile image
Jaydee1507Administrator

I'm not sure there will be a standard answer here as we are all different. When I first started Levo I do remember my TSH rising after one dose increase, much to the disbelief of my GP at the time. There isn't a right answer basically.

Have you had vitamin blood tests done? Ask GP to run tests for ferritin, folate, B12 & D3. we need OPTIMAL levels of these to feel well and help our thyroid hormone work properly.

Hoop1888 profile image
Hoop1888 in reply to Jaydee1507

I finally got my post initial dose blood test and my TSH has decreased to 6 (from 9)but my T4 hasn’t changed. Does this mean that the tablets aren’t working? I was also asked whether I’d been taking my tablets which I have. I’ve only missed 2 in three months and always take them away from food and other medications. They’ve upped my dose to 75.

Also, is it commonplace for doctors to really listen to your symptoms once you are actually on the levothryoxine? For example, are they aiming for say, middle of t4 range and TSH range or is it more than likely they’ll just stop once TSH goes below top of the range?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Hoop1888

The reason your T4 hasn't changed is likely just that you're not on enough hormone yet. I know we all tend to think that an increase would naturally mean that levels increase too but the reality doesn't always follow. See graph below as an illustration. The tablets are working perfectly well just your body needs more to respond appropriately.

Well done on getting a dose increase and quite right too.

Unfortunately doctors don't seem to be trained to listen to our symptoms. Patients have long complained about this issue and means that groups like this supporting and signposting hypothyroid people are kept very busy. To a great extent it can be individual with each GP as to where they think are numbers are good. Some will literally stop increases as soon as your TSH is within range. Others will get it to say 2, but most people feel well when the TSH is at or just under 1 so it can take some persuasion to get dose increases after a certain point as they then start blaming your symptoms on anything from your age, depression, psychological, menopause etc

I will stress that getting your vitamins to OPTIMAL will greatly help how you feel and get your Levo working to its fullest so work on getting them tested.

reality vs expectations
tattybogle profile image
tattybogle in reply to Jaydee1507

lo l .. that definitely wins the "most realistic graph" award Jaydee

Hoop .. if it does happen to you (that they stop listening when your TSH is just within range ).. keep tis post up your sleeve ... healthunlocked.com/thyroidu... -list-of-references-recommending-gp-s-keep-tsh-lower-

it is logical that we often end up to end up with less T4 than we started with when still on a low dose like 50mcg Levo .

The added T4 initially increases to total amount of T4 you have (some from thyroid / some from Levo ),, but just for a couple of weeks or so .... and then the TSH 'notices' this increase in T4 level and so TSH goes down a bit .. but then that lower TSH (6) is now asking the thyroid to make a bit less T4 than it was doing when the TSH was really shouting at it (9).

so the thyroid is now making less than it was in the first place ,, and if the dose is not enough to make up that difference, the T4 level is less.. until the dose is increased ...... This adjustment often has to happen few times before everything stays in balance an the amount of replacement is enough to keep symptoms improved for more than a few weeks/ few months at a time .

Hoop1888 profile image
Hoop1888 in reply to tattybogle

Thanksboth, this is very helpful. I’ve kept these links safe so I can whip them out should they be needed! :)

SlowDragon profile image
SlowDragonAdministrator in reply to Hoop1888

it means you need next increase to 75mcg daily

Retest again in another 6-8 weeks

Likely to need further increase in Levothyroxine after next test

Typically dose Levothyroxine will eventually be approx 1.6 mcg Levothyroxine per kilo of your weight per day

Approximately how much do you weigh in kilo

Levothyroxine doesn’t top up failing thyroid, it replaces it

Hoop1888 profile image
Hoop1888 in reply to SlowDragon

Thanks SlowDragon. I’m about 95kg. Regarding how long the new dose takes to start making a difference, is this a similar timeline to when you start on thyroxine first off? Or does it take less time when you begin increasing the dose as it’s already in your system?

SlowDragon profile image
SlowDragonAdministrator in reply to Hoop1888

so likely to need several further increases in Levothyroxine over next year or so

Try to always get same brand Levothyroxine, especially as dose is increased

Only changing one thing at a time….. dose or brand

Retest thyroid levels 6-8 weeks minimum after each dose change

95kg x 1.6mcg would suggest eventual daily dose might be 150mcg per day

Essential to maintain optimal vitamin levels, testing at least annually

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