Decrease dose or not...: Hi all, I was... - Thyroid UK

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Decrease dose or not...

Mattyboy220011 profile image
10 Replies

Hi all,

I was diagnosed with a very underactive Thyroid about 10 years ago, caused by Hashimoto disease. I have been taking Levothyroxine since. I am currently on 150 mcg. My recent blood results showed a low TSH of 0.09 but free T4 as 18.2 (within normal range - although high end of normal). I have been experiencing some symptoms of Overactive - i.e. sweating, mood swings, weight loss etc. Should I reduce by 25 mcg?

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Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

You havent given the reference ranges for the tests but your FT4 would be within range by most ranges, meaning you are not over replaced.

Being under replaced can feel like being over replaced, also low vitamin levels can cause hyper type symptoms.

What time of day was this test taken and how long since you last took your Levo? TSH varies throughout the day and is highest at 9am or earlier.

Sometimes low vitamin levels, which are common in hypo can affect TSH.

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.

Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before 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.

Mattyboy220011 profile image
Mattyboy220011 in reply toJaydee1507

Thanks very much @jaydee1507 - I have updated my profile now with more info/data and reference ranges for recent results. Thanks for the insightful comments, I am poor at taking my vitamins and eating fruit/veg so wouldn't be surprised if levels were low. I have just ordered a private test to check levels as I haven't had these updated for a while. The info on blood test timings is interesting, I hadn't really thought about this before, the last blood test was at 3pm! I will follow the guidelines you have set out next time. I've also just ordered a private Advanced Thyroid Test so I can view all bio-markers (inc T3 which I don't currently have) and then I can make a more informed decision about my dose. Will publish results here if that's okay too.

Jaydee1507 profile image
Jaydee1507Administrator in reply toMattyboy220011

It may well be that low vitamins are making your issues worse than they need to be, also low FT3 can cause similar issues. Do start a new post when you have the test results.

No doubt if you had tested early in the day your TSH would have been higher.

greygoose profile image
greygoose

Hi Mattyboy220011, welcome to the forum. :)

So, what exactly is the range for that FT4? We always need to know the exact numbers.

Personally, I would not change the dose on the basis of a TSH and an FT4 result. I would want to see the most important number, the FT3. Because if you reduce the T4, the T3 is going to go down, too. And symptoms can be deceptive. Hypo and hyper symptoms can often be the same. And it could be that you are actually a poor converter and your FT3 is low, and your symptoms are actually hypo symptoms, not hyper.

I realise the NHS will rarely test the FT3, and that is why so many of us have to get private testing. Would that be a possibility for you?

Details of private testing here:

thyroiduk.org/testing/priva...

Mattyboy220011 profile image
Mattyboy220011 in reply togreygoose

Cheers greygoose , really appreciate your reply. I've updated my profile with more details inc ranges given for recent blood test. Thanks for the T3 note - I have just ordered a private Advanced Thyroid Test as I do not currently have a T3 measurement and as you say it is extremely important. The test will also measure 10 other bio-markers inc vitamin levels. Will post results once I have them. My concern is that if my GP sees the TSH level in isolation of T3/T4 etc (which is what normally happens) they will assume I'm overactive and reduce the dose based on that so I'm holding off seeing him until I have the full bloods back.

greygoose profile image
greygoose in reply toMattyboy220011

Yes, I'm afraid that is usually what happens. They don't know much about thyroid. :(

jgelliss profile image
jgelliss in reply togreygoose

👏👏👏👏

SlowDragon profile image
SlowDragonAmbassador

Just testing TSH and Ft4 is inadequate

Which brand of levothyroxine are you taking

Do you always get same brand

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

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

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with Hashimoto’s

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Therefore VERY important to test TSH, Ft4 and Ft3 together to see how well you are converting

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

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...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Come back with new post once you get test results

Members can advise on next steps

Mattyboy220011 profile image
Mattyboy220011 in reply toSlowDragon

Thanks SlowDragon really appreciate the response. Yes, appreciate TSH/T4 alone is not enough so I have just ordered an Advanced Thyroid Test to get T3 and other markers inc Vitamin levels. I'll post the results once I have them. Thanks again.

SlowDragon profile image
SlowDragonAmbassador

I have been experiencing some symptoms of Overactive - i.e. sweating, mood swings, weight loss etc. Should I reduce by 25 mcg?

As you feel over medicated, you might consider reducing dose anyway by 12.5mcg 4 days a week….or by 25mcg twice a week

Retest in 8-10 weeks

But ideally get FULL thyroid and vitamin testing before changing dose

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