Borderline Underactive Thyroid... positive experiences please

[Patienceofatoddler]

We have been TTC for a number of months with one miscarriage.

Previously fell pregnant within a month or two (Very lucky I know but with having two Cholestasis pregnancies from 17 and 19 weeks not exactly a walk in the park).

I've had some basic bloods and my thyroid came back as borderline underactive...

Got to wait a couple of weeks to see GP and 6 weeks for repeat bloods :-(

Has anyone any experience of this?

Is this a real game changer for TTC?

I'm pretty gutted to be honest - Now I know there's a reason why we havnt likely got lucky yet.

Would love to hear experience of other woman (being treated or not) and how they found TTC...

Did treatment help?

How pregnant will you be in a week and a half? Have you got your test booked?

This is from the nice guidelines for subclinical hypothyroidism:

https://cks.nice.org.uk/hypothyroidism#!scenario:1

Refer or discuss with endocrinology (the urgency depending on clinical judgement) people with subclinical hypothyroidism (SCH) who:
⁃ Are female and planning a pregnancy.

Further down it says: (not in relation to pregnancy or ttc)

◦ If TSH is between 4 and 10 mU/L and FT4 is within the normal range
▪ In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.

I would suggest the gp needs to regard this as an urgent check as you're not planning a pregnancy, you are pregnant.

Can you print this out and show gp?

You could also try speaking to your local midwives.

@Ekphrasis - I am 5 weeks tomorrow so very very early.

Looking at dates il be exactly 7 weeks when my next bloods are checked.

For fear of sounding dumb these guidelines suggest the GP should seek guidance from a Endo if patient is planning a pregnancy?

I know it's just so frustrating as it's like fighting a brick wall with our GP - As I'm so so early I don't have any midwife contacts etc to raise this with.

Not quite sure which way to turn really rap as already been told 'stop worrying and no treatment required'

@Ekphrasis sorry do you have a source for the ideal TSH level for 1st trimester?

I had a baby last year. I have a very underactive thyroid. It had zero effect on conceiving or on my pregnancy. I just had a blood test to check thyroid levels at the beginning of the pregnancy and at 20something weeks. That was it.

Yes should refer to endo. There's no clarity on the impact of borderline underactive thyroid in pregnancy; some thyroids adapt, (so don't worry too much) but as they don't know how and individual will progress it's suggested that if planning a pregnancy to get tsh below 2.5, following a different range.

There's local guidelines on actual tsh range. For eg:

Page 13:
www.northoftyneapc.nhs.uk/wp-content/uploads/sites/6/2012/03/Thyroid-guidelines-North-of-Tyne-Area-Sept2016.pdf

British Thyroid Foundation:

www.btf-thyroid.org/projects/pregnancy/202-thyroid-in-pregnancy-information

I'd print it all off and take it to an appt or try contacting your local midwives?

A test then will be good, better if you can book it for next week? Just ring up and say I need to have a repeat test this week. Try to always have tests in the morning. I still would like to think they'll confer with an endo or the hospital as you are pregnant, and as it says in the guidelines. My gps did.

I understand this is frustrating and stressful but you're doing what you need to and your body will be making thyroxine, potentially enough so there's no change.

Thank you once again @Ekphrasis I have a GP appointment on Tuesday and will go armed with the links you provided and see where I get.

I release I need to keep it in perspective (If I hadn't pushed for tests I would be none the wiser) but at the same time I am not 100% happy with the response I've had so far and doesn't help I feel 'out the loop' as am so early in pregnancy so have no contacts and GP care has been so disjointed due to our practise having major staffing issues

How did the appointment go?

I'm wondering if contacting PALS for advice might be useful in this case, as in who you could get to answer your concerns ASAP.

@Ekphrasis my appointment was today I got my dates wrong

I saw a lovely GP - I went in armed with a couple of the webpages / articles you shared but didn't need them.

I have been put on low dose Thyroxine - referred to a consultant and had an early scan requested.

Feeling quite abit more positive this morning that someone actually acknowledged I don't need to just 'chill and not worry'

Thank you so much for your advice and links - this was all very new to me and a huge shock to find out we were actually expecting so I really appreciate it.

Pp have given you some great information already, I would also suggest looking at what the 'normal ranges' for this is in other countries as I have hashimotos (Brit living in Australia) which causes hypothyroidism and the normal ranges in the UK are extremely broad in comparison.

Meaning if you were in Oz they would likely medicate you with thyroxine especially in early pregnancy.

In the UK, their normal range has to be much worse.

Hi op, congratulations.
Just wanted to say if you phone GP reception for a copy
of your test results including ranges you can then pick it
up the next day or two (usually.)
You'll a good indication
of how you're TSH regarding treatment is responding over time.

Thank you @Username3258 I was planning on asking for them but completely forgot. I'm back next week so will ring and ask so I can pick up next week.

@Patienceofatoddler just wanted to say I was never advocating not taking thyroxine if you have a border line low it is however more of your choice because the doctors think you don't need it as much. One doctor was very honest with me that once I start taking it it will mostly be forever so t was my choice as it was only borderline if I had pushed for it I would of been given it and mine was lower than yours. It has now bounced back even better than before and I've had the condition for years now so it is possible to do it naturally 🙌A hugeeeeeer congrats on your bean! And I bet that thyroxine is making you feel much more perky now 😁 wishing you a healthy happy pregnancy! 1st trimester is exhausting on its own ha I was often found asleep in my office

@2furbabies I completely understand and each person has to find their path and for you it sounds like not medicating has worked.

I could have had this for years I have no idea.

What it means for me after pregnancy I don't know but I know as I have other health issues in pregnancy I want to do as much as medically possible to enable this pregnancy to hopefully progress.

I have really appreciated everyone's comments on this thread as frankly it has been a huge learning curve and emotional fortnight

@Patienceofatoddler oh bless you babe xx it's such a terrifying and amazing wonderful process! That's the only way I can describe it! Everyone said enjoy it but you can't help but worry but you do learn to go with it more and listen to your gut not google (if your like me). Xx

Yeay I'm so pleased @Patienceofatoddler!

I know what you mean about the need to feel your concerns are valid. I've experienced this many times with hypothyroidism, in pregnancy and outside it. It's only been through questioning and looking at verifiable sources (eg nice guidelines and BTF) that I've been able to get better standard of treatment and feel like I'm reasonable for pursuing it. At least my gp was honest a couple of years ago when he said that general practice drs aren't always the best at managing thyroid stuff!

Do you have a repeat test lined up? Ideally in 2-3 weeks / around 8/9 weeks.

Try to always get tests at the same time, preferably in the morning. Ideally take that day’s dose after the test. They key thing is consistency though; some take their thyroxine at night. (I was impressed that my mother’s gp told her to do this recently.)

Please do get this book; it’s very helpful. Maybe consider joining the BTF; I find their magazines and info really helpful. 9781903474198 Toft - Amazon UKwww.amazon.co.uk › Thyroid-Dis...

Always cross check medicines for interactions with thyroxine; a couple of times in my experience an interaction has been listed on one leaflet but not on the other. The book above lists the main interactions.

And congratulations again!

As user says keep a record of results and how you feel.

Remember sometimes symptoms can take a few weeks or even months to sort out.

Yes there's a bit of argument around correct tsh levels. The thing is that symptoms should always be taken into account too. I think it's very telling though that if you're ttc, it's a lower range - I can't help thinking surely that levels should be appropriated it all. However, apparently some people can be 'well' at that higher level, and as 2fur says, thyroids can occasionally 'bounce back' sometimes. Most people feel pretty crap though and want the medication.

If you're not fully on thyroxine, the key nutrients your thyroid needs are iodine, selenium and iron. Deficiencies in iodine can actually raise your tsh. Iodine is less important if you're on a full dose of thyroxine but still worth having. Very important for baby though (is in dairy, white fish and several pregnancy vitamins). Too much iodine is also bad, seaweed isn't a good source due to heavy metals.

@Ekphrasis Just wanted to say thank you for the advice.

8 weeks today and my TSH was 1.8 when tested a couple of days ago which my GP is happy with and have consultant appointment lined up

We have no idea if this was making TTC harder but I certainly feel happier knowing it's within the ideal range.

That's great @Patienceofatoddler!

Congratulations again!

I'd try to arrange another test around 12 weeks / 4 weeks from this one - you may get one at the hospital when you see the consultant but as it's often (here) in the afternoon I tend to ask gp/ receptionist if I can get it done so the results are ready for the consultant to review and so it's at the same time as previous tests (morning, though I don't give this as a reason!). The consultant appt is sometimes at 13 weeks too as is usually with your scan. Around the 11-14 week mark is usually when thyroxine requirements peak though you might not as you still have some function.

I hope you have a happy and healthy pregnancy!