I stuffed up my blood test: As I forgot to not... - Thyroid UK

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I stuffed up my blood test

KatyMac68 profile image
20 Replies

As I forgot to not take my tablet!

Tsh 2.4 range 0.27-4.2

T4 16.7 range 12-22

They aren't going to put up my levothyroxine are they?

(Diagnosed with possible subclinical hypothyroidism in Nov 23 and put on 25 levothyroxine wockhardt (also struggling with meno and have exciting CFS/ME, FM, hypermobility, IBS)

After 12 weeks (Feb 24), raised it 50 levothyroxine Mercury & I had a big reaction to it so now I'm on 2x25 wockhardt after a big row)

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KatyMac68 profile image
KatyMac68
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SlowDragon profile image
SlowDragonAdministrator

Free T4 (fT4) 16.7 pmol/L (12 - 22) 

Ft4 only 47% through range

And would have been lower if tested correctly

…..so with TSH over 2 yes you are clearly ready for next 25mcg dose increase

Explain you have some improvements but still lots of hypo symptoms

thyroiduk.org/signs-and-sym...

How much do you weigh in kilo?

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

KatyMac68 profile image
KatyMac68 in reply toSlowDragon

I weight about 77kgs atm

I am beating myself up I took 25mcg in the evening before and 25mcg about an hour before - I should have cancelled

SlowDragon profile image
SlowDragonAdministrator in reply toKatyMac68

Day before test

either take whole dose in morning

or

delay evening dose and your morning dose on day of test until after the test

Extremely easy to forget

Move/hide pills somewhere

If test done at GP surgery…..put pills in handbag to take after test

KatyMac68 profile image
KatyMac68 in reply toSlowDragon

I will next time but I had been so bloody pleased with myself about taking them at the right time as my brain got is so appalling and I shot myself in the foot

tattybogle profile image
tattybogle

there's no reason that a dose increase can't be given with those results .

TSH is still over 2 .. if GP say's 'no need for increase, TSH is in range now ' , show them these references all of which advise GP's keep TSH between about 0.5 and 2/ 2.5 ish in all patient on levo :

healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range- **also see replies to this post for evidence on why we test before taking levo, not after**

simple explanation of why TSH 'anywhere in range' is not the same as 'optimal for the individual' :

healthunlocked.com/thyroidu... the-shoe-size-analogy.

Taking your levo a few hrs before the test won't have affected the TSH result ... but it gives a higher fT4 result than if you wait 24 hrs .. however that is not a problem for you at the moment because your fT4 is still well within the range ~ about 50% ~ so there is clearly room for an increase anyway.

if GP says 'you don't need an increase because fT4 is good enough' ... then point out that it is showing that level because you took levo a few hrs before testing , which is not best practice. See ** above, for evidence of this to show GP that thyroid testing should be done before taking that days dose to get consistent results.

obviously none of the above means you need to push for an increase if/ when you feel ok on the dose you are on .. just pointing out that with those results you can get one if needed.

If GP very reluctant then ask for a "trial" increase .. pointing out that they can easily put it down again if it turns out to be too much .

KatyMac68 profile image
KatyMac68 in reply totattybogle

The gp and I don't have a fabulous relationship I feel quite bad that I'm so argumentative

But I won't stop while I feel so ill

humanbean profile image
humanbean in reply toKatyMac68

The gp and I don't have a fabulous relationship

Ditto.

greygoose profile image
greygoose in reply toKatyMac68

I feel quite bad that I'm so argumentative

Well, you shouldn't feel bad about it. If you don't agree with something you should say so. If he doesn't like it, tough. He'll have to get used to it. Doctors have got away with murder for too long, it's time more patients spoke up. You are not legally required to do everything he says without question, you have the right to voice an opinion. Long may you stay argumentative!

KatyMac68 profile image
KatyMac68 in reply togreygoose

How do I start the conversation the blood test says no action required

Do I just send an econsult saying when does my levothyroxine go up to 75mcg

Or ask to talk about my thyroid meds

I am not ringing up last time I was 47th in the queue

greygoose profile image
greygoose in reply toKatyMac68

I'm sorry, I have no idea how things work in the UK. It may say 'no action' on the results but who said it? The doctor? A lab technician? Do you really think that person knew what they were talking about? Did they give it full consideration before writing it? I doubt it. These people are like robots, they don't see the person behind the numbers. So, of course you should question it if you disagree. Just say 'I disagree'. Silence is construed as consent, never forget that. :)

KatyMac68 profile image
KatyMac68 in reply togreygoose

The computer in the lab said it, so the admin in the surgery filed it

So the gp won't see it

KatyMac68 profile image
KatyMac68 in reply toKatyMac68

I dont reckon they will put it up without a fight

Screenshot of nice guidelines
greygoose profile image
greygoose in reply toKatyMac68

That is insane! The whole system is insane!

OK, so if the doctor won't see it, you need to bring it to his attention. Don't just accept defeat at the hands of a computer! You need to stand up for yourself. Sounds like nobody has a clue what they're doing.

tattybogle profile image
tattybogle in reply togreygoose

GP's do see results KatyMac ,........ eg hence why we have to wait until a GP has seen them before reception can let us have a printout .

That is not to say they will do anything about them, other than give them a cursory glance ( especially if they are in range ) .

The 'no action required' is the GP comment, not a lab comment.

GP's get hundreds of results back to look at each day ..... but they are definitely seen , they are not just filed by receptionist.

KatyMac68 profile image
KatyMac68 in reply totattybogle

Oh that's what they told me last time

Never mind it'll still be a fight

tattybogle profile image
tattybogle in reply toKatyMac68

eg an example of one surgery's protocol here .. look in FAQ's for 'Actioning Blood Results (Doctors)' ashcroftsurgery.co.uk/blood...

yes it may be a fight ,, or it may not .. depends entirely on which GP you happen to see and their attitude/ experience ... perseverance and intelligently applied pressure are required if you want to get anywhere with improving thyroid treatment beyond 'the most basic'.

keep pushing to see a GP regarding your remaining symptoms . yes it may well take a couple of months to get past the reception filter once a 'no action' comment result has been filed .. that's how it is ~ not enough GP's, too many patients. receptionist are under a lot of pressure not to make unnecesary appts.

then when you do eventually get to see a GP , use those reference i gave in my earlier reply above (list of references recommending GP's keep TSH lower) and when they say no , your result are in range now .. go down the line of "why not , what harm would it do to try ?" .... point out that there is nothing in NICE guidelines saying they can't try to get TSH lower in range to see if it improves symptoms. it say's "get TSH in range" .. it doesn't say WHERE in range .. so 'lower in range' IS following the guidelines just as much as anywhere in range.

and if a trial increase proves too much / takes TSH too low / takes ft4 too high... then it is easy enough to lower the dose a bit , no harm done.

You will need to reassure a GP that you are not just hell bent on increasing dose for the sake of it, but that you have a logical reason for wishing to try an increase... and that you are aware of the risks and consequences of taking too much thyroid hormone and of the symptoms that could indicate 'too much' , and would of course let them know straight away of any symptoms that could indicate overmedication...... you get the idea.

McPammy profile image
McPammy

it might not be the T4 levo that needs increasing. It could be low t3. Have you had your t3 checked?

KatyMac68 profile image
KatyMac68 in reply toMcPammy

I am working on being fit enough to work again, then hopefully I'll.be able to afford the private tests

Or maybe I'll manage the PIP form and that will give me more money - but that is delayed because the gp can't find all my records

Enuffisenuf profile image
Enuffisenuf

You have my sympathies, I made the same mistake recently. Request another test.

KatyMac68 profile image
KatyMac68

So tomorrow is my next blood test

I have put my tablets away in a drawer; let's hope the brain fog let's me take them afterwards!!

If I dont get an increase on the new test I am going to have to see/speak to a gp as I feel like shit - tired, low appetite, joints/muscles/tendons are sore, my brain has collapsed in on itself & my brain fog has been joined by a lovely underlying headache, I'm also a bit breathless and my heart is a but racy so it it's not thyroid what is it

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