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?

No one?

Mainly placemarking, as interested in responses. My thyroid tests show normal function, but I have thyroid autoantibodies which increase risk of miscarriage.

@Patienceofatoddler if your repeat thyroid tests come back as underactive again then yes it probably will have been making it harder to conceive. Good news is though that it can be easily treated and your fertility should improve with your thyroid function. Make sure your doctor knows about your miscarriage and length of TTC.

Hi op, what was your tsh?

It is recommended that you're under 2.5 for conception. If it's higher you should be put on thyroxine. I believe it's in the nice guidelines. If gp seems unsure, ask them to call the obstetrics consultant or an endocrinologist consultant.

It could take 6-8 weeks to take effect and you should make sure tsh is below 2.5 if not 1. Then ttc.

You should get a test between 4-6 weeks when pregnant and be monitored during pregnancy every 4-6 weeks, dose adjustment is v important in the first trimester as baby doesn't have a thyroid till later and your requirements go up due to extra blood volume etc.

You may not need many dose changes or you may find you're fully hypothyroid by the end.

Do post back with results or qs.

Thank You @strawberrye I'm having another test in six weeks.

It seems such a long way away

I had an inkling something wasn't right - Sounds stupid I know.

Really appreciate your response. X

@Ekphrasis Thank you for such a detailed response.

I've no idea what the level was - It was quite a rude abrupt GP over the phone who told me as I requested a same day call back as last week was told they wanted to talk to me about the result but have a three week wait for 'routine' call backs 😞

I may phone tomorrow to ask for levels if I have the energy to.

So if I were to get pregnant it then makes it higher risk?

Not that it makes a huge difference as had cholestasis from 19 and 17 weeks respectively with my previous two - Naturally just feeling quite deflated about everything now though.

Thank you for such a detailed response - Really appreciate it.

Please do phone back and find out, you have a right to know.

Borderline is usually around 4.5 and up to 10, over 10 is clinical hypothyroidism. But it does need to be well controlled in pregnancy, below 2.5 though total suppression is normal and fine (down to say 0.5). Im not sure if the gp is saying you have 2.5/3 and that's borderline iykwim.

Apart from difficulty falling pregnant, there is an increased risk of mc as well as implications for the baby (though this tends to be at much higher tsh levels, way into double figures.)

It is also very important to get enough iodine (from dairy and fish) if ttc and during pregnancy along with folic acid, vitamin d and iron is a good idea - choose a pregnancy vitamin with it in if possible. This is for baby's benefit and yours unless you completely rely on thyroxine, then it's just for baby (iodine is used by the thyroid to help make thyroxine and t3.)

Ideally you would be euthyroid for 3 months (and taking the vitamins for this time too) as it takes around that time for a new egg to mature and be released and so everything would be more balanced etc.

I would ask if it's possible to get an appts sooner or a telephone chat with a gp.

Do you think you're feeling symptoms of hypothyroidism?

I'm currently 19 weeks pregnant and I found out from my initial pregnancy bloods that I have borderline under active thyroid, I think it was 4.7... and I'm being tested every 2-4 weeks just now, but doesn't appear to be changing. I had been TTC for just over a year and had spoken to the GP during that year and they said that they wouldn't do anything until I had been trying over a year... very frustrating (especially as I fell pregnant with my DD the month we started trying!!) when my midwife told me I asked if it would have affected TTC and she was very vague but I think she was basically saying yes... but it didn't matter now I was pregnant... not very helpful I know but if I had know that a year ago I would have definitely pushed for more tests/investigations. I'm still just being monitored for now, and spend most of my non-working time napping...

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

Mentions referral / contacting endocrinologist regarding planning pregnancy if subclinical hypo.

And here mentions it again regarding appropriate levels preconception or pregnant.

cks.nice.org.uk/hypothyroidism#!scenario:3

The British thyroid foundation do have info on their website regarding this and also are due to publish updated guidelines they've worked on with a gp and consultant endo.

In reality a referral to an endo is unlikely (and unnecessary if gp knows to monitor in first trimester and throughout pregnancy) but not all gps know about the different ranges for pregnancy (as it's usually a maternity hospital matter) and the importance of managing in the first trimester, neither do all midwives and you don't tend to see a specialist till 12 - 14 weeks. Mine double checked with the hospital every time a test was a bit borderline and followed their advice.

Sometimes it's helpful to have the official info to hand but hopefully you won't need to.

Purple are you being managed by gp or hospital? Pregnancy is tiring but if it's at 4.7 you should be on thyroxine, and would feel better.

It's good that you're being regularly tested however.

Well nhs levels v fertility levels are completely different as you're aware.
When I was given thyroxine and managed by gynae and then obstetrician my pregnancy progresses no problem.

It's worth looking up your local nhs trust guidelines on thyroid care, also as blood test ranges can vary a little between areas. This is an example which sets out the care plan in more detail and was written by an endo who's work has contributed to the nice guidelines. Page 13 is the relevant section.

Frustratingly nice changed their guidance to say refer to an endo (who would know ranges) but in practise (in my experience and speaking to others) it tends not to happen.

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

@Ekphrasis no I'm not on anything for now, had 4 blood tests to check since I had my initial tests at 10 weeks. Just managed via GP and midwife just now. Apparently GO checked with Endo consultant and they advised just to keep monitoring it at this stage, next test is 24th May but for now just playing by ear and waiting on advice from midwife or GP.

Positive Story here!
I've had a border line under active thyroid since I was 19. Some days I feel really tired and can actually tell now when it's under! I have a 7 month old baby with no complications other than she wouldn't fit down the birth canal lol as she was a very healthy 7.5 and I'm quite petite lol.
You can actually raise your thyroid yourself without medication if you look up curing a thyroid with foods as there is a lot of foods etc that will impact it negatively! Trust me it works because when I don't stick to my foods and say start eating bread again I feel absolute Awful. Soya is another one really bad for your thyroid there's so many and I'm not just talking hippy bullshit because I am far from that ha! The doctors didn't seem interested in my healthy alternative and just wanted to prescribe pills which I didn't even need yet! Of course if my pregnancy was endangered I would of taken them but because it has been low for so long I knew I could it help it myself during pregnancy as the thyroid takes a battering during that time xx

I got pregnant after 2 months of trying sorry forgot to add that! And I unfortunately had to have an abortion many years ago so I know it hasn't effected my fertility xxx

Ekphrasis already gave a great answer, but just to add my own experience:

It took me 9 months to fall pregnant with DS1. A few months after he was born, I was diagnosed with Hashimotos (which meant underactive thyroid)

I then had two miscarriages in very quick sucession - both times my TSH was found to be very high. When we took a few months to make sure it was stable (and below 2), I was able to fall pregnant again very quickly and I'm now 35 weeks with DS2. I've been having my TSH checked every 4-6 weeks throughout this pregnancy and it's taken a lot of work to get it stable.

So I guess, what I'm trying to say, is that in my personal experience, an underactive thyroid has most likely led to problems in getting pregnant and problems with staying pregnant, but that once under control, it's been fine.

Good luck!

@purplemanholecover the regular tests are great and good that gp is checking with an endo. I'd always go with GP and endo (no offence to the MW who I'm sure is great but it's not part of their remit).

Congratulations prima! New guidelines that will be published by the BTF will describe your care - it can be hard to keep on top of it but it's worth it. I've had no growth issues this time and I've been extremely insistent that I get regular tests. In my first pregnancy I had a small nightmare as old onky just found out there could be an issue in pregnancy (was on thyroxine) and had to speak to several gps to clarify care when I was ttc, (afterwhich they were great) but then it just so happened the batch of thyroxine I was on was faulty which I didn't find out about till around 12 weeks, by which time, despite 3 raises, my tsh was 13. (Cue lots of stress).

It then went over as they switched to a good batch as well as raising my thyroxine right up (originally 125, went to 225 in total.) I felt horrendous then ok then hyper by 19 weeks.

Ds had IUGR which wasn't picked up; my placenta was very small. It seems to be the case now that many hospitals do extra growth scans if you have a thyroid issue. (I've had them anyway as over 40 and ds had iugr). All has been great this time, I did creep to 3.5 around 12 weeks but dealt with it quickly- I could tell I was too. I'll find out his actual size and placenta etc on Monday!

2furbabies the key needs for a healthy thyroid are appropriate levels of iodine (not too much, not too little) iron and selenium. So dairy and white fish are important, plus a few Brazil nuts.

Thyroxine is only a replacement for what's missing; no different to a type one diabetic taking insulin except that diabetes is much more chaotic. Thyroxine has a long half life of 7-10 days. I would never risk borderline results during pregnancy and I think it's irresponsible to advocate for it.

Soya can be an issue for healthy thyroids as can goitrogens (eg broccoli etc) if you're iodine deficient. There are concerns about the impact of vegan diets on thyroid health, unless you take a good vitamin with the RDA in, especially if a bit borderline as a result.

This is American, where they supplement many foods with iodine, we don't here. But it gives a really good over view of why all this is important for women, pregnancy and children:

ods.od.nih.gov/factsheets/Iodine-HealthProfessional/#h6

Iodine guidelines:

www.bda.uk.com/foodfacts/Iodine.pdf

Going off on a tangent, but for any vegans reading, this vitamin tablet has the rda for iodine if not pregnant for breastfeeding.

www.vegansociety.com/shop/supplements/veg-1-blackcurrant-90-tablets

Thank you everyone for your responses.

I phoned the GP but they won't give me numbers over the phone

I have a phone consult Tuesday so will collage questions and ask them then but appears the GP doesn't seem concerned.

More worrying for me is I'm due AF tomorrow and done a cheapie test and I think it's a very feint line.

I am terrified as not strong enough to deal with a miscarriage again at the moment and it's incredibly feint 😞 and surely if I were pregnant someone would have picked up on it at my bloods which were done last week anyway.

My brain is truly in overdrive currently.

Roll on Tuesday.

I had borderline underactive Thyroid diagnosed at 18 - then at 39, after two babies I was diagnosed with being severely underactive and during the scan of my thyroid they saw lots of historical scarring which would indicate I had been severely underactive for most of my adult life, just never tested again after the age of 18.

I have two children, fell pregnant as soon as we tried with both - the thyroid issue made no difference to either the pregnancy or long term breastfeeding (I didn't realise it could!?). I have been on thyroxine (pretty much maximum dose) since my second DS was 4 months old.

Good luck OP

Ooh congratulations OP! It does look faint but I found those tests were always fainter than frers. (Even when they claimed to be super sensitive!)

Please don't worry - the key thing is to ask what the gp is calling borderline (what is the tsh) and you'd like them to firstly check with an endo as you understand from the nice guidelines that the ranges are different when ttc and especially in pregnancy. Borderline is normally 4.5, for ttc it needs to be around 2.5/3. But monitored as it can creep up in some women.

Secondly, if you're pregnant, you'd like a second test between 4-6 weeks gestation as per the nice guidelines. And also either endo referral or phone call to clarify how to proceed.

To reassure you, your thyroid does grow during pregnancy (which might be why you were ok Tiger - all women are different) - it really doesn't mean this is terrible. But it needs investigating and monitoring. Also please remember miscarriages can occur for all sorts of reasons. I had 3 between my son this pregnancy and my tsh was perfect. As I said, I was definitely out of range during my first pregnancy in the first trimester and my son is great, bar the iugr, from which he caught up within a month of (non stop) bf!

If your gp practice has several gps you could perhaps speak to / see a different gp. Sometimes pregnancy things seem to mean you're seen a bit quicker.

You are on top of this and you do have this. Ask receptionist to do paper print outs of results that you'll pick up (though I have never been refused over the phone personally).

Thank you everyone especially @Ekphrasis your replies seem so rational and sensible which was what I needed. I was quite frankly devastated and so confused.

I have a GP phone consult on Tuesday with the GP who referred me for the original bloods.

I am currently away until Monday with family and just took a cheap test which they sell onsite where we are staying and it's a definite 'Yes'

So I will ensure I tell the GP this Tuesday in order to discuss what this means / further action required.

I refuse to get excited but cannot quite believe the turmoil and emotions in the last two weeks

Gosh that's a strong positive!

It is possible they put you on a low dose of thyroxine straight away; ideally a test first over the next week.

Well done - do keep asking them to check guidelines with a consultant on your behalf.

I found out my TSH was 5.5.

Spoke to GP who said to test 4 weeks from first test so in a week and a half and no need to treat as so borderline.

I will bring it up at my booking in appointment - By which time I should have had my second blood test done and results through I hope.

It does feel very disjointed and unorganised - Have to admit also doesn't help after a few general mishaps my confidence in my GP surgery is not great which doesn't help

That's out of range for early pregnancy and ttc. They aim to keep below 2.5 or 2 in the first trimester. Is there any way you can speak to a different gp or call your midwife?

Or I'd even be as bold as to call the maternity hospital/ epu and ask about how this is best dealt with though official routes.

If your gp called the obstetric consultants or an endocrinologist they'd get guidance. You need a second ASAP but you'd be told to start 25 Levo at the least.

Don't worry, I'm sure this can be sorted out, and as I've said, my tsh was poorly controlled with ds and he's fine, it just needs sorting out.