First bloods after starting levothyroxine only TSH tested?

[Elle137]

Good morning, I asked for both T4 & T3 to be tested? The nurse explained that "it's only done at the lab if needed" so how's that going to work? How will the GP know if I need an increase etc.....no answer? What are we dealing with here? Has it always been this way or is it because the NHS is basically broken? I think I'll increase to 75 now & I'll do a private medichecks thyroid panel for my appointment with GP but what happens when someone cannot afford £89?? Sorry for the rant but I'm shocked......

[SlowDragon Administrator]

Yes the current testing is useless

Rare to get more than TSH tested these days which is completely inadequate

Give your GP copy of your recent MMH test and request 25mcg dose increase in Levo

healthunlocked.com/thyroidu...

[Elle137 in reply to SlowDragon]

Thank you for your reply, it's shocking that one can be prescribed a medication without having a simple blood test to confirm it's efficacy? 🤷

[tattybogle]

many nhs labs use what they call 'reflex' protocol, or similar . ( to reduce what NHS see's as inappropriate/ unecessary testing , and as a result of budget limitations)

reflex protocol is usually something like this , but it varies :

test TSH initially >>>> if TSH is over range >>>>> then test fT4 (from same blood sample) .

if TSH is under range, then test fT3 and fT4.

some nhs labs still routinely do TSH and fT4 every time . mine does.

It can be very difficult/ if not impossible to get fT3 done on demand by an NHS lab , even if the GP asks for it , the lab will often overrule it ..... having said that i've had fT3 done 5 times over the last 10 years (without me knowing about it) , with no obvious rhyme or reason as to why it was done on some occasions and not others.

basically , if your TSH is in range ,and you don't have a pituitary diagnosis (central/ secondary hypo), the NHS don't think there is any need to know FT4 / or FT3 levels .

[Elle137 in reply to tattybogle]

Thank you for your reply, I'm diagnosed (hashimotos thyroiditis) antibodies (TPO) & ultrasound of thyroid (very small) medicated in June this year & started on 50 levo, this blood test is the first after medication started? I know from a private test that my TSH is "in range" so the lab won't test further? How could a GP possibly know if I need an increase etc....without testing at least T4? without this forum I wouldn't have known & probably continued to be really unwell, always grateful to everyone on here for advice 🙂

[tattybogle in reply to Elle137]

better informed GP's can use TSH (+ any symptoms) quite effectively to guide them on many occasions , even without knowing fT4 . (if they do 'reading' they will know that lots of recommendations advise them to keep TSH below 2/ 2.5 ish in all patients on levo . healthunlocked.com/thyroidu.... )

less well informed GP's will think TSH 'anywhere in range' is good enough which may leave you undermedicated/ or overmedicated.

they are generally not interested in where fT4/ fT3 are , unless they are way out of range . .. and they think the TSH would be the first thing to flag up out of range fT4/ fT3 levels .

there are obviously several flaws in their 'thinking'.

[Elle137 in reply to tattybogle]

Indeed 😔

[Sparklingsunshine in reply to Elle137]

Monitor My Health do a thyroid panel minus antibodies for £32, with a 10% discount code available from Thyroid UK website, makes it £29.10.

Not as bad as £89 but still an outlay. I cant think of many other conditions bar thyroid where so many end up testing themselves because the NHS wont do it thoroughly. Can you imagine the NHS refusing diabetics a HB1ACbut offering them a glucose test? Nor can I.

[Elle137 in reply to Sparklingsunshine]

Thank you so much, very helpful 😊 No, I cannot imagine that happening, I still can't get my head round it!!

[TSH110 in reply to tattybogle]

Ah that explains why my practice suddenly always test free T3, it’s slightly under. Pity they don’t do it as a matter of course for everyone, we might actually get decent treatment and it would clearly show how skewed results are on Levothyroxine

[Sleepman]

As Tattyboggle says symptoms should drive as well as any blood tests. Hopefully you are a little bit better and tolerating tablets.

I had to write it down every few days as it is all so SLOW, I could not remember well.

The NHS lab policy of just doing TSH means you are not getting a blood check if you are in the 10 to 15% who are poor converters.

I guess they think symptoms would drive you to next level checks /Endo.

This equals probably a year or so of extra misery and suffering if you are a poor converter or have other issues. Dosing on TSH at this stage is likely fine.

T3 can still be released from attacked thyroid, so I do think you might be better checking these in a few months time. To check if you are a good converter to T3. (As above MMH £29.)

1. What is your lastest TSH ?

2. What are your symptoms. Hopefully 50 mg has made made you a bit better and you are tolerating the tablets. This is a big step and possible positive.

3. Have they tested vit d b12, folate and ferritin? Forum advises these levels need to be optimal.

Likely need to supplement these as we get low stomach acid and do not get them from diet properly ...

4. Has gluten/celiac test been done ? As you are autoimmune type, you may have this delight too to deal with.

5. Have you got access to blood tests from doctor. It can take a while to get sorted but very helpful.

6. So much to do and all with fatigue and brain fog. I emailed myself symptoms and what to do next in a long chain as I was forgetting.

7. Unfortunately it takes many many months for the body to recover from this fully. This forum has really helped me.

[Elle137 in reply to Sleepman]

Good morning & thank you for your reply.1. My latest TSH 1.76 (medicated at 50 levo)

Sooooo many symptoms, the worst: brain fog, fatigue, hair loss, joint pain/swelling, chronic lower back pain etc, made better by levo initially but then started to return.

Private testing of:

Vitamin D 94

B12 157

Folate <20

Ferritin 93

All raised by taking supplements as advised from this amazing forum!

Coeliac test: negative but I decided to go both gluten & lactose free, again from advice from here, invaluable information.

I am diagnosed as hashimotos thyroiditis, TPO 347, with atrophy of thyroid gland.

I have the airmid app so I can see most of my results on line.

I am due to see GP on 17th 🙂

I've learnt so much from reading everything (books) recommended on here & everyone's experiences have helped shape my path forward.

[Sleepman]

Read some of your posts now, you are doing well at sorting it all out and T3 conversion encouraging but early days yet.

It is frustrating slow but you have T3 and T4. I think I was on 100mg before T4 raised to 10.

I would post your vit and irons results as a new post as likely to get missed down here. I am not knowledgable enough ...

You did the saliva test as well for adrenals.

Below 1 on TSH seems to be consensus on here. Your at 1.6.

1.6 x weight in kg is rough guide o dose as you probably know.

Good luck