update and frustrated with doctors

[luthien]

So I've been on my starting dose of levothyroxine 50ug for about 6 days; as advised by my fertility specialist not the GP. The GP were happy to hold off until these results were in - not sure why but they didn't seem keen on me to start until after my phone consultation next week even though I have the prescription.

I had a repeat blood test Friday - should be for FT4, vitamin B12, antibodies and folate as they completely missed these the first time round. Well guess what they've messed it up again and managed to repeat my TSH (which is fine really), but I did get the FT4, not any others.

I know that it's too soon to look at TSH which is why I wasn't bothered when they said they wouldn't be able to request it. Here's my results as of Feb 19th 2021:

FT4 13.8 (GP range 10.0 - 24.5)

was 12.7 Jan2021 (Thriva optimal range 12 - 17)

TSH 7.7 (GP range 0.2 - 5.5)

was 13.81 Jan2021 (Thriva optimal range 1 - 2.5)

was 14.2 Dec2020 (GP range 0.2 - 5.5)

I know not to go with the TSH and not to focus too much on these as they're too frequent, plus only been on medication for 6 days so it shouldn't have any effect yet.

Do these range changes sound good or should I just ignore and wait for the 6-8 week GP one?

I have chased up why the remaining tests were not done, and that they need to be tested. So we shall see what they say this time.

[tattybogle]

did you get the range that was used for the GP's fT4 test ? as in .. fT4 12.7 [ ? - ? ]

They probably had to do TSH as part of the 'job lot' to get fT4 done if you see what i mean , so that 's not exactly a mistake ,,, but not doing the TPOab /B12etc that were requested is ,as usual .... rubbish.

[tattybogle in reply to tattybogle]

However whatever the range for fT4 test is... the TSH at 7 does confirm they were correct to start you on Levo.

It IS possible that just 6 days of levo is responsible for lowering TSH from 13 to 7.

(And even if it wasn't ... 7 is still high enough to need treating. )

[luthien in reply to tattybogle]

I've updated my results above with the ranges, I always forget things, sorry!

My fertility specialist said to start asap, the gp wasn't bothered - crazy

[tattybogle in reply to luthien]

Current score :-Fertility Expert 1 ....GP 0

I know which one i'd be listening to in future. But yes you're right , don't give much thought to these latest result's for TSH/fT4 as it's just too soon. wait for the 6 week test to see the effect of the 50mcg

[SlowDragon Administrator]

Easier often to just get full thyroid and vitamin testing done privately

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

Which brand of levothyroxine are you currently taking

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 at start of levothyroxine and at least annually

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

Contact GP again to rerequest testing 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...

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/

Vitamin D NHS postal kit

vitamindtest.org.uk

[luthien in reply to SlowDragon]

Brand - it says accord on the packet, and almus pharmaceuticals on the box if that helps. I think it's whatever the pharmacy in this case Boots has as their own generic ones.

I had taken my last levothyroxine dose 24 hours before, and was a fasting blood test at 8:50am hence they said they may as well check vitamin levels.

I have a Thriva test for the full thyroid profile which I'll do in about a month time as it'll accurately reflect changes in levels - planned for a month as I thought the doctors had got the tests right this time - obviously not!

Note my GP won't take any reading from any other tests - they just ignore them even if you provide them with a printout - they want to do their own.

[SlowDragon Administrator in reply to luthien]

So doctor is being obtuse

Vitamin levels, if deficient show GP

If low, but within range you will need to self supplement

Test 6-8 weeks after starting on 50mcg levothyroxine

Yes Almus and Northstar are boxed Accord brand. Only available in 50mcg and 100mcg tablets

So when dose is increased to 75mcg ....just ask for higher number of 50mcg tablets and cut in half

[luthien in reply to SlowDragon]

Is it better to stick with one brand rather than switching? what are the differences? sorry for sounding stupid

[SlowDragon Administrator in reply to luthien]

Yes....if possible

Many people find Levothyroxine brands are not interchangeable.

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

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, Aristo and Glenmark are the only lactose free tablets

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

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....

but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

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

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

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