Help please about my results: Help please l don't... - Thyroid UK

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Help please about my results

Dan5795 profile image
23 Replies

Help please l don't understand my results.l just feel exhausted and powerless every time. Dr has put me on 25mg Levo and l don't feel any better, in fact, l feel worse after 4 weeks of taking the medication. Age 40,bodyweight 120kg.

Serum-free t4 12,6pmol/l -normal range 7,0-17,0

Serum tsh level result 4,65mu/l -normal range 0,20-4,50

Se thyroid peroxide Ab conc <1kiu/l -normal 0-9

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Dan5795 profile image
Dan5795
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23 Replies
greygoose profile image
greygoose

Hi Dan5795, welcome to the forum.

Not really surprising you don't feel any better. Your doctor was very wrong to start you on 25 mcg levo at your age. A normal starting dose is at least 50 mcg.

Your FT4 is on the low-side for someone on thyroid hormone replacement (levo). And your TSH much to high. You need an increase in dose to 50 mcg as soon as possible. :)

Dan5795 profile image
Dan5795 in reply to greygoose

Thank you greygoose,l will try to ring my doctor next week. knowing him he will tell me to wait for the blood test in March.

greygoose profile image
greygoose in reply to Dan5795

Don't let him get away with that! Blood should be tested six to eight weeks after starting a dose - preferably six weeks after starting on such a small dose. That is the protocol recommended by NICE. They quote NICE guidelines when it suits them, but conveniently forget when it suggests they do something they don't want to do!

Dan5795 profile image
Dan5795 in reply to greygoose

Thank you will give them a call on Monday first thing in the morning. Do my results indicate Hashimoto,s?

greygoose profile image
greygoose in reply to Dan5795

Well, your antibody test is negative, but that doesn't mean much for three reasons:

* What they are testing for are TPO antibodies. Antibodies fluctuate all the time, so one test might be negative, and the next positive. But, if you have one over-range test, it does mean you have Autoimmune Thyroiditis.

* There are two types of Hashi's antibodies: TPOab and TgAB. The NHS only tests TPOab, and they might be negative, but if your TgAB are positive, it means you have Hashi's anyway.

* Some Hashi's people never even have over-range antibodies. They are diagnosed by ultrasound. So, a negative antibodies blood test does not mean you don't really have it.)

Dan5795 profile image
Dan5795 in reply to greygoose

Thank you so much for all this information. My Dr did not even bother explaining much to me.

greygoose profile image
greygoose in reply to Dan5795

Well, you can't explain what you don't know, can you. And I don't suppose he knows much about it. None of them do.

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

As greygoose says …standard starter dose levothyroxine is 50mcg

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

Request vitamin testing at next test

Your TPO antibodies are negative for Hashimoto’s

NHS doesn’t test TG antibodies unless TPO are high

Minority of Hashimoto’s patients only have high TG antibodies

You would need to test both thyroid antibodies privately

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

Ultrasound scan of thyroid can be helpful

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

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

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease

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 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

List of private testing options

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 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Dan5795 profile image
Dan5795 in reply to SlowDragon

Thank you, l will take everything you have written into consideration. In August 2021 l had a TSH level of 8 and l was only treated for vitamin deficiency.

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

Which vitamins were deficient

Wockhardt only make 25mcg tablets

Many people find Levothyroxine brands are not interchangeable.

Watch out for brand change when dose is increased or at repeat prescription.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

Many patients do NOT get on well with Teva brand of Levothyroxine.

Unless you are lactose intolerant best avoid Teva

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, or Aristo (100mcg only) are the only lactose free tablets

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

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

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

SlowDragon profile image
SlowDragonAdministrator in reply to Dan5795

In August 2021 l had a TSH level of 8 and l was only treated for vitamin deficiency.

What were thyroid and vitamin results and ranges in August

Dan5795 profile image
Dan5795 in reply to SlowDragon

The brand is Wockhardt.

SeasideSusie profile image
SeasideSusieRemembering

Dan5795

Are those results before you started Levo?

Are you in the UK?

Dan5795 profile image
Dan5795 in reply to SeasideSusie

yes, those results before Levo and l am in Uk.

SeasideSusie profile image
SeasideSusieRemembering in reply to Dan5795

Thanks. Amazing that you got a diagnosis because in the UK Primary Hypothyroidism is generally not diagnosed until TSH is over 10 or TSH over range with below range FT4.

Catseyes235 profile image
Catseyes235 in reply to SeasideSusie

I’m pretty sure the ranges have gone down since I started umpteen years ago?? What do you think? I’ll compare and contrast on patient access.

SeasideSusie profile image
SeasideSusieRemembering in reply to Catseyes235

? Sorry, not quite sure what you're referring to there.

Ranges change, yes, it's probably due to recalibration of the machine (or a new machine) but that doesn't matter. It's the range that comes with the result that matter. A few years ago the hospital lab which does my tests had a range of 11.8-24.6 for FT4 and it's now 7-17, and TSH range was 0.27-4.2 and now it's 0.35 - 5.5 but other labs are different, we see many ranges on here.

Catseyes235 profile image
Catseyes235 in reply to SeasideSusie

Yes just thought it had changed in the last 40 years. TSH is meaningless for me as negligible. 0.04 Not overtreated - just poor conversion.

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine doesn’t top up failing thyroid it, it replaces it….so it’s important to be on high enough dose

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Likely to need several further increases in levothyroxine over coming months

Catseyes235 profile image
Catseyes235

Usually there’s 6 weeks between tests but at such a low dose you’d be justified in getting doctor to increase dose. Good luck ..hope you feel better soon.

Catseyes235 profile image
Catseyes235

Until Doc agrees to it or waits for tests you could of course just double the dose without waiting for new test?? Then get new tablets when they run out!

Dan5795 profile image
Dan5795 in reply to Catseyes235

I doubled the dose and to be honest l felt like l was falling apart. Sweating and feeling powerless. Maybe this medication is not right for me.

Catseyes235 profile image
Catseyes235 in reply to Dan5795

Wow ..50mcg is still considered a low dose. But I think takes ages to get right. Really hope you get this sorted!

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