NICE guidelines for TSH when trying to conceive - Thyroid UK

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NICE guidelines for TSH when trying to conceive

Becsf profile image
13 Replies

Hi there,

I've been looking for the NICE guidelines where they state the target for TSH when trying to get pregnant. I found this - but it doesn't state the target TSH figure. I'm about to argue with my doctor over a levo increase and am looking for ammunition. Apart from not getting pregnant I don't really have the classic symptoms of hypothyroidism (hashi's) to make my case with, even though my TSH on my last test was 4.1 which I know to be too high to get pregnant, but it seems the doctors don't know this.

I do now have an appointment with an endocrinologist coming up but it's not for a while so I want to get my dose increased while I wait.

Thanks so much

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Becsf
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13 Replies
tattybogle profile image
tattybogle

i'm not sure they've got round to writing any actual NICE (NHS)guidelines for "thyroid treatment in pregnancy " yet .. there are pregnancy references, so someone will hopefully be along to give links to what there is ,

HOWEVER if your TSH is 4.1 you don't necessarily need specific pregnancy guidelines to get them to increase dose.

The usual recommendation for conception is TSH not higher than 2 (i think) .....and the following references can be used for that:

healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower

they all advise GP's to keep TSH below 2/ 2.5 in ALL patient's on levo .

Some of them are from GP 'update' sources , and one is written by NHS registrar's in Endocrinology /Cardiology .. so a GP should at least be willing to read them and consider the recommendation seriously.

SlowDragon profile image
SlowDragonAdministrator

previous post

healthunlocked.com/thyroidu...

shows you have Hashimoto’s

Ferritin levels terrible

In need of dose increase in levothyroxine

Levothyroxine doesn’t top up failing thyroid…it replaces it

How much levothyroxine are you currently taking

Have you had 25mcg dose increase since these last results

Approx 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.

As you have Hashimoto’s have you had coeliac blood test done yet

If not get tested BEFORE considering trial on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

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...

Pregnancy guidelines 

thyroiduk.org/having-a-baby-2/

gp-update.co.uk/files/docs/...

See pages 7&8

btf-thyroid.org/Handlers/Do...

Also here - dose increase in levothyroxine as soon as pregnancy test confirms conception 

cuh.nhs.uk/patient-informat...

thyroidpharmacist.com/artic...

Low ferritin, low thyroid levels and miscarriage 

preventmiscarriage.com/iron...

Low iron and hypothyroid 

endocrineweb.com/news/thyro...

Becsf profile image
Becsf

Thanks tattybogle and SlowDragon, super helpful as always.

But one of the links from slowdragon -healthunlocked.com/redirect... the first pregancy guidelines one does not work. I've tried googling to find it but to no avail. Any ideas?

To answer your questions SlowDragon - the conversation with my doctor now is to increase my dose from 75mcg to 100mcg. Last time I self medicated the increase and it took a long time for the doctors (or physician's assistant - I haven't seen a doctor actually yet) to authorise that increase. They say I need to be careful I don't develop hyperthyroidism.

I have been gluten free since October and have also cut out soya and dairy. But then I realised that my levo had lactose in it so now I'm going to ask for a lactose free brand. Before I stopped all gluten I was tested negative for coeliacs. I think I weigh about 63kg.

Since the last tests I've started taking heme iron and non-heme iron pills, which I hope is increasing the ferritin (I read here about the different pathways - thank you!). I am also taking vitamin D, B12 complex, selenium, magnesium, inotisol, zinc and probiotics.

I feel generally fine - perhaps more tired than most people but I can't tell as I think I've been low iron/hypothyroid for a long time. My feet and hands are often cold and I've noticed my hair coming out a bit when I brush it but I don't think this is new. I don't have any brain fog or severe fatigue.

Thank you all.

tattybogle profile image
tattybogle in reply to Becsf

i'll tag SlowDragon so she gets notifies of your question about 'the missing link' in the morning Annoyingly some of our 'best' links have been moved/ removed from that redwhale GP site ,, hopefully SD may have an up to date link to the page ... i remember someone saying they had found some of them again.

Becsf profile image
Becsf in reply to tattybogle

Thank you. I thought just by mentioning the names tagged them!

SlowDragon profile image
SlowDragonAdministrator in reply to Becsf

annoyingly Red whale link has gone

Guidelines on dose levothyroxine by weight shows 100mcg daily is likely daily dose levothyroxine

63kg x 1.6mcg = 100mcg

I don’t think you need worry about levothyroxine being lactose free…….I am also dairy free….but haven’t changed to lactose free levothyroxine

humanbean profile image
humanbean

I've found a copy of the Red Whale PDF on my PC. The bit related to pregnancy is this bit :

I underlined the most important bits.

Hypothyroidism in pregnancy

It is important to adequately manage hypothyroidism in pregnancy (BMJ 2007;335:300). There is an increased rate of early and late obstetric complications with both overt and subclinical hypothyroidism, hence the rationale for treating all in this group. Untreated hypothyroidism can also affect the neurodevelopment of the foetus.

Pregnancy can trigger the progression of subclinical hypothyroidism to overt hypothyroidism and can increase levothyroxine requirements.

Adequate treatment of hypothyroidism during pregnancy reduces complication rates.

Refer women with overt and subclinical hypothyroidism for shared obstetric care.

Aim for TSH 0.4–2.5 mu/l.

Increase usual levothyroxine dose by 30% once pregnancy is confirmed.

Monitor TSH at least once each trimester.

If hypothyroidism is diagnosed during pregnancy, specialist assessment is advised to aim to correct TSH as quickly as possible.

Should we screen for hypothyroidism in pregnancy?

NICE and the Endocrine Society Guidelines do not recommend routine antenatal screening for hypothyroidism. They recommend 'case finding in high risk individuals'. However, some researchers have expressed concerns that this approach will miss a substantial number of cases.

Older studies have shown an association between untreated hypothyroidism in pregnancy and reduced IQ performance of offspring.

This study (NEJM 2012;336:493):

randomised 20 000 pregnant women in the UK and Italy to 1st trimester screening or usual care (with a stored serum sample in the usual care group assessed post-delivery).

Women with raised TSH or low T4 were offered treatment.

There was no difference in IQ scores between offspring at 3y.

It did not assess other obstetric outcomes.

The editorial (NEJM 2012;366:562) points out that cut-offs to start treatment reflect very mild hypothyroidism and that levothyroxine was commenced relatively late in pregnancy (median gestational age 13w) which may be too late to obtain maximum benefits.

This study does not support routine antenatal screening for hypothyroidism. However, a further RCT is currently on-going.

Becsf profile image
Becsf

Thank you all for this. In the end the doctor wouldn't listen to any of my arguments/evidence and just said now I've been referred to the endo, and my TSH/T3 are 'in range' they won't do anything else. I think with the endo appointment booked they feel they have done their bit. So frustrating. I think I will increase the dose myself and order the prescription early so I don't run out. Is this what other people have done in similar situations? I really can't argue with them anymore, and if I change GP practice I'll lose my endo referral I assume.

tattybogle profile image
tattybogle in reply to Becsf

to be honest Becsf i'm not sure that loosing the endo appointment is much of a loss,

What is the referral for ? ~ if an endo gets a referral for a patient with problems on Levo and the TSH still 3.7 /4 ish or whatever it is now,, the first thing they would do ( after wondering why the GP hasn't done it themselves already) is to increase the levo and say come back and see them in x months ... in fact an endo may not even accept the referral until the GP has tried that first ... and presumably the referral will be months away.

since this GP seem utterly unhelpful on such a simple issue as following the NHS guidelines that tell them to increase dose , i'd be tempted to go to another GP .... the referral may not dissappear even if you did move surgeries ..but i don't know.

it is not usually possible to put prescription in early anymore .. most surgeries now won't sign them more than 10 days before it's due to run out . you'll just have to see see what happens if you try it.

Becsf profile image
Becsf

Actually my endo appointment is at the end of Feb so I don't think it should be too hard to get enough extra by ordering even just 10 days early. I will check the amounts I have. Maybe I'll go up to 100 every other day.

I'm not really expecting the endo to do anything more than work to keep my thyroid hormones optimal for conception, rather than just 'in range'. I'm hoping for one with some knowledge of reproductive issues who may look into whether I'm deficient in other hormones. They have been tested but this experience has led me not to trust the doctors when they say things are 'in range'.

Thank you for all your advice.

tattybogle profile image
tattybogle in reply to Becsf

you're welcome :)

tattybogle profile image
tattybogle in reply to tattybogle

p.s be aware that increased dose needs 6 weeks to give reliable blood results for TSH. so bear this in mind (endo may want new bloods done) .

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