Decrease in levothyroxine again!!

[Readbecgar]

Any ideas why for 8 weeks I’ll be on 100mg and then I’ll have blood test and I’ll have to be decreased to 75mg then 8 weeks later I’ll have a blood test and it will be put back to 100mg and now again it’s being decreased it’s so frustrating. I feel awful when on 75mg but they don’t listen to how I feel just look at numbers.

[Jaydee1507 Administrator]

What time of day was this blood test?

What you mean is the only number they are looking at is your TSH.

Your FT4 which is actually what really matters (as well as FT3 that they haven't even tested) is only at 43% of its range and you clearly need more Levo.

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

What are you supplementing with?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, 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& 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.

If your GP is insisting you drop your dose then quote them NICE guidelines.

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

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.

[Readbecgar in reply to Jaydee1507]

I had my test at 8:45am and didn’t take meds till after. If my Levo needs increasing why are they decreasing? I have t had any other bloods done since last year but I will ask them to test these again and I only have a multivitamin

[Jaydee1507 Administrator in reply to Readbecgar]

Gps tend to think that TSH is all thats required to determine how much thyroid hormone you need but this isn't the case at all. Often we have to advocate for ourselves and not simply accept what a GP says. You can refuse to change dose. You need to speak up for yourself and question what your GP is saying or doing.

Multivitamins are not recommended in this group for a number of reasons including not containing enough of any vitamin to raise the level to optimal, containing cheap, inactive versions of vitamins, containing iron and magnesium that will prevent you absorbing the rest of the vitamins, containing iodine that isnt recommended etc

Its far better to test vitamin levels and supplement individually.

Suggest you get vitamins retested and start a new post when you have the results.

[helvella Administrator]

This is pretty common. I call it heavy-handed dose adjustment.

Some doctors seem to think that doses can only be adjusted by 25 micrograms. Just maybe, 87.5 would see you much happier?

Achievable by taking 75 mcg one day, 100 mcg the next. Or getting your tablets to include 25 micrograms and split one. E.g. 50 + 25 + half a 25.

Have you been getting dispensed different makes of levothyroxine? That can also contribute to going up and down.

The nearer we are to what might be the right dose, the smaller adjustment need to be. Otherwise we overshoot. Drop the dose. And undershoot.

[Readbecgar in reply to helvella]

yes I have been getting different brands dispensed.

[haggisplant]

ask to try either an alternating dose level eg 100 one day, 75 the next or be prescribed the 12.5 pill made by Teva to add to your 75.

[SlowDragon Administrator in reply to haggisplant]

Many people can’t tolerate Teva

Teva 12.5mcg is also relatively expensive

Just cutting a 25mcg tablet in half is absolutely fine

[Readbecgar in reply to haggisplant]

Yes that’s a good idea I’ll have mention that thank you.

[FancyPants54 in reply to Readbecgar]

Too many people have a problem with Teva levothyroxine. Much better to have normal 25mcg tablets and a pill cutter to cut them in half. They cut well.

[SlowDragon Administrator]

which brand is 75mcg

Which brand is 100mcg

Ft4 is far to LOW

So you most likely need dose INCREASE in Levo

Was test early morning and last dose levothyroxine 24 hours before test

As you have Hashimoto’s essential to test vitamin D, folate, ferritin and B12 at least annually

Refuse to reduce dose until these have been tested

What vitamin supplements are you taking

Approx how much do you weigh in kilo

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

[Lottyplum in reply to SlowDragon]

Don't these inept GPs make you want to spit - right in their eye!!!

[Regina66 in reply to Lottyplum]

Yes 😤

[Readbecgar]

when I have 100mg it’’a Accord

50mg brand accord

25mg brand North Star or Tevo

My Levothyroxine has been lowered to 75mg from 100mg. I had my blood at 8:45am and didn’t take meds till after.

I only take a multi vitamin and about 80 kilos

[Sparklingsunshine in reply to Readbecgar]

Based solely on your weight and using the following formula of 1.6mcgs of levo x weight in kilos a dose of 128mcgs would be about right, but and this is a big but, its only a theory, some need more some less. But it can give you a rough idea of your daily required dose.

Ditch the multivitamin, they are usually filled with nasty cheap ingredients, not enough to do any good or in the wrong form and often certain vitamins and minerals taken together cancel each other out. Its vitamin D, iron, B12 and folate that we often need when hypo.

[SlowDragon Administrator in reply to Readbecgar]

Northstar (now discontinued) was Teva for 25mcg

Other 25mcg brands are Wockhardt or Mercury Pharma

[Readbecgar in reply to SlowDragon]

Think I only had the North Star for 1 month then yea tevo. I know have a 75mg levo

[helvella Administrator in reply to Readbecgar]

Currently, the only 75 microrgam product is from Teva.

Is that what you are getting? Or are you taking a 50 plus a 25?

[Readbecgar in reply to helvella]

No just the 75mg from Tevo x

[SlowDragon Administrator in reply to Readbecgar]

And which brand when on 100mcg

Many people don’t on well with Teva

[Readbecgar in reply to SlowDragon]

Accord

[SlowDragon Administrator in reply to Readbecgar]

Work out which brand suits you best and ALWAYS stay on same brand

Accord only make 50mcg and 100mcg

Cut 50mcg in half to get 25mcg

You don’t have to be on one or the other

Eg

Try 100mcg 3 days and 75mcg 4 days per week

[Poppycat999]

Hi there They frustrated me constantly! They are lowering you because of your TSH level which is low. They only really look at that result! Make sure you have an early morning blood test and take levo immediately afterwards. I also supplement with quite a few vitamins and minerals which help how l feel. Good luck with it all.