Advice please! (part 2)

[DaisyTed]

Hi! I posted last week about current symptoms and advice on how to proceed/what to say to my GP. Just got my most recent thyroid results, which are from 04/07/22 and taken in the afternoon:

Serum T4 - 16 pmol/L (range 12-22)

Serum TSH - 1.98 (range 0.3-4.2)

Free T3 level not checked

I also asked for thyroid antibodies test, which was done at diagnosis Dec 2011(7 months past-partum) and was 274 (range 0-135).

Translation/interpretation much appreciated! As I said in my last post - I have been told for years my results are normal. I take 50 mg/75 mg Levothyroxine (Accord) on alternate days. I hate going to the GP but have gone a few times over the years with brain fog, muscle aches/pains, digestive issues, hair loss etc. I have been diagnosed with anaemia and vit D deficiency at different times, and tested for coeliac but no links have ever been made with hypothyroidism! I have had some benefits from going gluten free, but still have some stomach pains/digestive issues, joint stiffness, fatigue and sleep problems. Any help from you knowledgeable bunch much appreciated 😃

[tattybogle]

hi again DaisyTed

So the thyroid antibodies ( i assume TPOab ? ) are positive .. which means i don't have to eat my hat :). .. they show the cause of your hypothyroidism is definitely "autoimmune" ie . Hashimoto's (or technically Ord's if you didn't haver a goitre (enlarged thyroid). NHS usually just call it "Autoimmune Hypothyroidism".

Your TSH and fT4 are indeed in the 'reference range' , but that doesn't mean your dose is absolutely right for you . 'Normal'/ reference range is a large range ,and we are all individual and quite specific in regard to where we feel best within that range . (in fact some of us feel best slightly outside of 'the range'.)

You dose is still relatively low . Most patients will end up needing somewhere between approx 75 -150mcg before they feel consistently better.

There is definitely room to try increasing your dose

Your fT4 is FT4: 16 (12 - 22) 40.00% calculator ~ thyroid.dopiaza.org/

This shows there is plenty of room to try increasing dose to see if it improves symptoms .

The TSH is 'within range' and GP will probably say that is 'good enough' , and may also say they don't want it any lower as "low TSH increases risk for heart and bones" ,

But 2 (1.98) is still a bit higher than is common for healthy people.. they are often closer to 1, and once on Levo we often need to be a bit lower than 1

You can use this list of recommendations to have a conversation with GP about trying an increase in Levo: healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower

Some are written for GP's 'update' sources, and one is written for GP's by NHS registrar's in Cardiology /Endocrinology .

You will see there is no concern with 'low' TSH unless it goes below about 0.04

[tattybogle in reply to tattybogle]

p.s ... since that was done in afternoon, the TSH would have been at it's lowest ,, it would have been higher if done at 9am .

Get future tests done at 9 am if at all possible. and take that days levo AFTER the test)

NHS will not agree a 9am test is necessary for thyroid so i usually have erm ...'work commitments' ..that mean i unfortunately can't come for blood tests later in the day

Also the results are now a bit old ..GP would probably want to do a current test before agreeing to any dose increase.

[DaisyTed in reply to tattybogle]

Thanks for the quick reply! Yes the antibodies test was anti-thyroid perixidase ab cumulative. And I had a goitre so assume Hashimoto’s? I will ask for a new test and ensure to get it done early etc. Should I ask to get vitamin/Ferrarin/folic acid levels checked also? Thanks for the links and information - I will have a good read before chatting to my GP! Many thanks again 🙏

[tattybogle in reply to DaisyTed]

yes you should definitely ask , worth a try see ~what you get . Say B12 /Vit D /ferritin/ Folate were "recommended by ThyroidUK charity"

Don't mention the words "internet" or (god forbid!) "forum" .. they will assume you have been brainwashed by lunatics.

[DaisyTed in reply to tattybogle]

haha!! Thanks for the tips! 😉

[SlowDragon Ambassador]

Request dose increase in levothyroxine to 75mcg daily

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

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable and Teva brand levothyroxine upsets many people

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Low vitamin levels are directly linked to being under medicated on too low a dose levothyroxine

ESSENTIAL To test vitamin D, folate, ferritin and B12 at least annually

Thousands of members forced to test privately to make progress

NHS only tests and treats vitamin deficiencies

We need GOOD vitamin levels on levothyroxine

Levothyroxine is Ft4 and for good conversion of Ft4 (inactive hormone) to Ft3 (active hormone) we need OPTIMAL Vitamin levels

What are your most recent vitamin results

Exactly what vitamin supplements are you currently taking

[DaisyTed in reply to SlowDragon]

it’s Accord brand. I just started to take vit D mouth spray (25 ug). Also take Floradix tablet 1 x day, which has 7 mg iron, 1.25ug vit b12 and 100ug folic acid in, as well as vit c and other things (- actually just realised I’m only taking half the recommended dose as should be taking 2 x per day). Haven’t had vitamins levels checked, but the last time I had my iron checked (July) it was normal. Any recommendations for testing these privately if my GP isn’t keen?

[SlowDragon Ambassador in reply to DaisyTed]

List of private testing options and money off codes

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

cheapest for testing vitamins

Monitor My Health now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

bluehorizonbloodtests.co.uk...

Monitor My Health Is cheapest option for just TSH, FT4 and FT3 too

£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/

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Come back with new post once you get results

[SlowDragon Ambassador]

approx how much do you weigh in kilo

you’re likely very under medicated

Increase dose levothyroxine slowly upwards

First get GP to increase to 75mcg daily…..retest after 6-8 weeks

Then likely to need further increase….either to 87.5mcg daily or straight to 100mcg daily

Unless extremely petite likely to need to be on at least 100mcg levothyroxine per day

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.

[DaisyTed in reply to SlowDragon]

I am 63kg… might get re-tested, then chat to GP about increasing doseage using the info above! Thanks 🙏

[SlowDragon Ambassador in reply to DaisyTed]

so likely to eventually be on 100mcg levothyroxine per day

[DaisyTed in reply to SlowDragon]

good to know - thanks again!