On Thyroxine - 8 weeks bloods shows TSH has dro... - Thyroid UK

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On Thyroxine - 8 weeks bloods shows TSH has dropped but still feel dreadful.

Tired_MiddleAged profile image
16 Replies

Hi all

I’m on daily 50mg Levothyroxine for 8 weeks after private bloods showed the following;

TSH 6.51 (R 0.27-4.2)

T3 4.1 (R 3.1-6.8)

T4 14.6 (R 12-22)

High antibodies so likely Hashimotos. GP was reluctant to prescribe me, but did at the advice of an Endocrinologist.

For reference I am 5ft 7 and 91kg.

Just had my follow up 8 week bloods which shows;

TSH 3.03 (R 0.27-4.2)

T4 16.5 (R 11.0-21.2)

Blood was taken fasted and over 24 hours after last Levothyroxine dose.

So now I am in range, but still feel dreadful. I’ve got b12, iron and vit d supplements to start taking (I didn’t do this earlier as was confused as to whether this would disrupt my levels and affect if my dosage needs to be increased)

So my question is. Should I book an apt with the GP to request thyroxine dose increase as still feel dreadful, or try the vitamins first and then seek thyroxine dose increase if I still feel dreadful?

Through all of this I have never had a follow up with the GP to talk this through (all I got was a text to say I needed the thyroxine prescription), so just feeling a bit lost with next steps.

Thank you.

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16 Replies
greygoose profile image
greygoose

The results may be in-range, but your TSH is still far too high, and your FT4 to low, so I imagine your FT3 will be even lower. No wonder you don't feel good. You need and increase in levo now. But, you still need to start the supplements. Nutrients need to be optimal for your body to be able to use the thyroid hormones you're giving it.

If you can get an increase - and you should, because 50 mcg is just a starter dose - you should start that. A week later, start the supplements, but only one at a time, about about two week intervals, so that you know if you can tolerate them or not. I take it you did have your nutrients tested before buying them?

Just one more thing:

* if you are taking vit D, you also need to take magnesium and vit K2-MK7

* if taking B12 you also need a B complex to keep the Bs balanced

* when taking iron you need to take it at least two hours away from everything else - or it will block absorption of everything else - and four hours away from thyroid hormone. You need to take it with vit C to help absorption.

:)

Tired_MiddleAged profile image
Tired_MiddleAged in reply to greygoose

Thank you, will look into those extra vitamins, but will try and get a GP apt to push a dose increase.

greygoose profile image
greygoose in reply to Tired_MiddleAged

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Request next dose increase in levothyroxine up to 75mcg and bloods should be retested again in another 6-8 weeks

Likely to need further increases in dose over coming months

Which brand of levothyroxine are you currently taking

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.

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

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

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

sps.nhs.uk/wp-content/uploa...

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

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

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Thank you, will book GP apt and request increase. GP is still prescribing 8 weeks worth at a time and not on repeat yet, perhaps they won’t do that until things have stabilised a little.

Levothyroxine brand is Accord. Thank you for those resources, going to have a read now.

SlowDragon profile image
SlowDragonAdministrator

previous post shows absolutely dire B12

healthunlocked.com/thyroidu...

Iron 35 (R 30-150)

Folate 14.9 (R 8.85-60.8)

B12 29 (R 37.5-188)

Vit D 59 (R 50-250)

You said a month ago

yes the GP wasn’t too worried then but perhaps levels were higher than they were in my recent bloods. Will call today and see if I can get that info - thank you!

Has GP tested for Pernicious Anaemia yet …if not why not

You quite likely need B12 injections

See my replies to post above yours on similar terrible B12 levels

healthunlocked.com/thyroidu...

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Sorry yes I got my B12 checked last week and it was 288 ng/l (R 197-771) so not as bad at is was, but will still take B12 complex.

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

So important to start with separate B12 FIRST

Don’t add vitamin B complex until at least a week after starting B12

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Ok great will make sure to do that 👍🏻

SlowDragon profile image
SlowDragonAdministrator

How much vitamin D are you taking

Retest vitamin levels at next test in 8 weeks after next increase in levothyroxine

Many people find Levothyroxine brands are not interchangeable.

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

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

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Request extra 50mcg tablets per month and cut in half to get 25mcg per day

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

List of different brands available in U.K.

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

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Thank you that’s a great tip. Now the next challenge is to actually get a GP apt! Oh and then convince them to increase the dose as I’m sure they will still keep on about the guidelines!

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

Print out guidelines I gave you in earlier reply above and be ready to show them if necessary

Frequently necessary to push for every dose increase

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Thank you. I’ve managed to get a telephone appointment tomorrow, so will be armed with the facts and report back!

Tired_MiddleAged profile image
Tired_MiddleAged

Hi everyone, just to update, the GP prescribed me an increase in Levothyroxine so have started on 75mg today. Let’s see if that helps. Thanks for all your advice!

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

great news

Work on improving low vitamin levels too

Retest again in 8 weeks

Make sure you test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Ideally don’t change brand levothyroxine as you increase dose

Stay on Accord if possible

Cut 50mcg in half to get 25mcg extra

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Ahh they gave me a different brand - Wockhardt, GP said I shouldn’t notice any difference. But when I re-test after 8 weeks should I request Accord to cut in half? Is there an issue with having two diff suppliers?

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