Titration of Levo halted at 75mg because TSH is... - Thyroid UK

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Titration of Levo halted at 75mg because TSH is 0.09 in recent blood test

Bearo profile image
13 Replies

I started Levo 50 in January but only got up to 75mg in October. I just had my most recent blood test result - TSH only - and as it’s 0.09 they want me to reduce rather than increase Levo. I asked for the FT4 result, which they haven’t got, and they’ve agreed to ask the lab for that (10 days later?) and talk again.

In October , on Levo 50, TSH 0.91, FT4 was 22% through the range.

In December, on Levo 75, TSH 0.09, FT4 tbc

I was hoping to go up to 100 Levo, and then have a private test to see how FT3 was doing, but they want me to reduce Levo rather than increase. I won’t accept a decrease but feel I need an increase as the Levo did help for 5 days after the last increase, but that was it, didn’t feel any different otherwise. I take Teva - no problems with it, but it isn’t doing anything for me ( apart from more energy for five days).

Obviously I need to know what T4 and ultimately T3 are doing, and I’ll get a private test done sooner if necessary.

Does the TSH result preclude an increase in Levo? Should I be asking for the increase? Should the TSH have dropped that much before I reached full dose?

(Test was fasting at 8.45, biotin stopped five days before.)

I continue to supplement D , B12, B complex, and magnesium

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Bearo profile image
Bearo
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13 Replies
shaws profile image
shawsAdministrator

You should request both Free T4 and Free T3. The TSH is from the pituitary gland not the thyroid gland. Therefore as T3 is the Active Thyroid Hormone I think they should test both.

Are you aware that the blood draw should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from your last dose and the test and take it afterwards.

SlowDragon profile image
SlowDragonAdministrator

Important did you remember to stop taking vitamin B complex a week before BLOOD TEST?

If not test results may be invalid - biotin in vitamin B complex can falsely affect test results

You need to refuse to reduce levothyroxine while you get FULL thyroid and vitamin testing done .....almost certainly via private testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Looking through previous posts can see TPO antibodies were negative

Significant minority of Hashimoto’s patients only have high TG antibodies

20% of Hashimoto’s patients never have high thyroid antibodies

Ultrasound scan of thyroid can be helpful

£150 for private scan

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Or it may be your thyroid has packed after breast cancer treatment

Bearo profile image
Bearo in reply to SlowDragon

I stopped all B vitamins five days before...hope that was enough. Will now get the private test....I had been waiting to raise T4 and vitamins B12 and D. D was up to 95 in October but B12 only 348 and I’ve only just started supplementing that.

I don’t understand what a low TSH means on mono therapy.

SlowDragon profile image
SlowDragonAdministrator in reply to Bearo

Common with Hashimoto’s and especially with low vitamin levels

Central hypothyroidism is considered rare by medics ....more likely rarely diagnosed

B12 looking to maintain at over 550

fuchsia-pink profile image
fuchsia-pink

I would say I'm not comfortable reducing the levo until I have both free T4 and free T3 results, so that I knew where my actual thyroid hormones were ...

Personally I like both frees in the top quartile of the lab range; I certainly wouldn't want a reduction in levo if either were in the bottom half of the range ...

Good luck x

Bearo profile image
Bearo in reply to fuchsia-pink

I have refused a reduction - medic thinks I’m now hyper. I’ll get the other tests done, but can’t believe my T3 will be high as I dont feel any different to when I started Levo.

JAmanda profile image
JAmanda

I'm a far less patient person than you clearly, lol, but I'd simply buy a private test ASAP. In fact for a hundred pounds and more, I'd go for the Advanced well woman test on Medichecks and get a complete picture of vits too. Then you'll have the info to get good advice here as well as to arm yourself for your next chat with the doc.

Bearo profile image
Bearo in reply to JAmanda

Yes, I will have to get the private test. I’d been waiting because last time GP did T4 and the folate, ferritin, B12 and D. T4 wasn’t very high and nor was B12. D was climbing as I’d been supplementing. I wanted the T4 and vitamins to be higher when I get the T3 in the private test. I’d be very surprised if my T4 and T3 have shot up - I don’t feel as though there’s been any change.

Happily jogging along at 0.02! Discussed with cardiologist fine by her. Dr said ok stay on 125! Di

Bearo profile image
Bearo in reply to

Yes, if I felt I was already on a good level of medication I would feel more comfortable. It’s one thing refusing a reduction, but it’s another asking for an increase with a low TSH and nothing else tested!

penny profile image
penny

As I’m sure you’ve read on here many times, the tsh level is not a reliable diagnostic; GPs tend to use it to the detriment of patients. Good luck.

Bearo profile image
Bearo in reply to penny

Yes, I do know that. But what does it mean when it drops low before reaching full dose? If my T3 turns out to be optimal that will be one thing, but if it’s low?

Bearo profile image
Bearo

Thanks, everyone, for your comments. I’m going ahead with a private test while waiting for nurse practitioner (didn’t even get to speak with a GP) to see if there’s a T4 result. I know I need the T3 result, too. I just feel no change on Levo so far, so see no point being on such a low dose (75mg). I’ve refused a reduction.

I’ve only just started supplementing B12 . (Stopped all B vitamins 5 days before blood test). It could be my symptoms are low vitamins and thyroid is ok?

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